JUSTICE FOR CHILDREN AND YOUTH
CANADIAN BAR ASSOCIATION -- ONTARIO
CONCERNED FRIENDS OF ONTARIO CITIZENS IN CARE FACILITIES
ALZHEIMER ASSOCIATION OF ONTARIO
ONTARIO FRIENDS OF SCHIZOPHRENICS
ONTARIO RESIDENTIAL CARE ASSOCIATION
CONSENT AND CAPACITY REVIEW BOARD
CONTENTS
Tuesday 20 February 1996
Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /
Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement
et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick
Ben Clemens; Sheila Clemens
Justice for Children and Youth
Cheryl Milne, staff counsel
Canadian Bar Association--Ontario
Adela Rodrigues, co-vice-chair, health law section
Deborah Tarshis, member, health law section
Elena Hoffstein, chair, trusts and estates section
Margaret Rintoul, member, trusts and estates section
Concerned Friends of Ontario Citizens in Care Facilities
Freda Hannah, president
Heather Graham, board member
Survivors of Medical Abuse
Sharon Danley, representative
John DeSipio
University of Toronto
Dr Peter Singer, director, joint centre for bioethics
Dr Ed Etchells, department of medicine and the Toronto Hospital
Alzheimer Association of Ontario
Shelley MacEachern, president
John Ellis, executive director
Susan Kitchener, manager of public policy
Ontario Friends of Schizophrenics
Elsie Etchen, president
Bill Phillips, second vice-president
Don Weitz
Ontario Residential Care Association
Rick Winchell, executive director
Consent and Capacity Review Board
Michael Bay, chair
Paul Milne
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président: Martiniuk, Gerry (Cambridge PC)
Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)
*Boyd, Marion (London Centre / -Centre ND)
Chiarelli, Robert (Ottawa West / -Ouest L)
Conway, Sean G. (Renfrew North / -Nord L)
*Doyle, Ed (Wentworth East / -Est PC)
*Guzzo, Garry J. (Ottawa-Rideau PC)
Hampton, Howard (Rainy River ND)
Hudak, Tim (Niagara South / -Sud PC)
*Johnson, Ron (Brantford PC)
*Klees, Frank (York-Mackenzie PC)
*Leadston, Gary L. (Kitchener-Wilmot PC)
*Martiniuk, Gerry (Cambridge PC)
*Parker, John L. (York East / -Est PC)
*Ramsay, David (Timiskaming L)
Tilson, David (Dufferin-Peel PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Brown, Michael A. (Algoma-Manitoulin L) for Mr Chiarelli
Caplan, Elinor (Oriole L) for Mr Conway
Johns, Helen (Huron PC) for Mr Hudak
Kells, Morley (Etobicoke-Lakeshore PC) for Mr Tilson
Marchese, Rosario (Fort York ND) for Mr Hampton
Also taking part / Autres participants et participantes:
Ministry of the Attorney General
Spinks, Trudy, manager, implementation support and counsel, implementation support unit
Clerk / Greffière: Bryce, Donna
Staff / Personnel: Swift, Susan; McNaught, Andrew, research officers, Legislative Research Service
The committee met at 0904 in committee room 1.
ADVOCACY, CONSENT AND SUBSTITUTE DECISIONS STATUTE LAW AMENDMENT ACT, 1995 / LOI DE 1995 MODIFIANT DES LOIS EN CE QUI CONCERNE L'INTERVENTION, LE CONSENTEMENT ET LA PRISE DE DÉCISIONS AU NOM D'AUTRUI
Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
BEN CLEMENS, SHEILA CLEMENS
The Chair (Mr Gerry Martiniuk): Good morning, members, ladies and gentlemen. Our first submission is from Mr Ben Clemens and Mrs Sheila Clemens. Thank you for attending. I know I speak on behalf of the whole committee in extending condolences to you about Lonnie, your son. You have one half-hour and you may proceed at your convenience.
Mr Ben Clemens: I come to this committee today with no credentials nor professional expertise, but simply as a bereaved father devastated by the recent loss of my 28-year-old developmentally challenged son, Lonnie, just 10 months ago.
He met his tragic death only four and one-half days after entering Sunnybrook Health Science Centre suffering from an impacted bowel. Due to his constant refusal to give informed consent to treatment because he was so frightened, despite our pleas for physicians to treat him, especially since a psychiatric assessment had been done one and a half years prior when he was in a similar condition and he was found to be incapable of understanding the consequences of refusing treatment and acting in his best interests, following his admission, he lay in bed for three days before physicians finally gave in to our insistence that treatment commence. By that time, it was too late to cure a desperately ill young man.
It is quite apparent that the staff, in general, had an incomplete understanding of the Consent to Treatment Act, which delayed initiation of treatment. They were clearly intimidated by the legislation.
I shall not expound on the events which led to his untimely death and the circumstances which we, his immediate family, and Lonnie were subjected to at the hospital, as you are undoubtedly well aware of this tragedy by now, as well as being aware of the recently concluded coroner's inquest into Lonnie's death. I shall deal later with my comments in support of specific recommendations which came as a result of the inquest and which will be reflected in situations encountered at the hospital centring on the Consent to Treatment Act.
Firstly, it is necessary to profile this special young man which respect to his strengths and weaknesses in order to deal with the subject of capacity which appears, for all intent and purpose, to have been the basis upon which the Consent to Treatment Act was legislated by our former government and shall continue to be of primary concern in the Health Care Consent Act.
To his family, friends and acquaintances, Lonnie was remarkable. He loved people, carried everyone's problems on his young shoulders, and was caring, concerned and thoughtful. He was indeed a decent human being.
Life, though, was not easy for Lonnie. Besides possessing growth problems for most of his early years, he was developmentally delayed and plagued with behavioral outbursts due to his frustrations, and as a result faced many obstacles and difficulties throughout his 28 years. Yet, in spite of them, he became an asset and well-respected member of the special-needs community. Lonnie viewed life as an adventure and a challenge. He faced each day with optimism, trying his utmost to please himself as well as his family.
He spent all of his leisure teen years, up to the day he died, at the Bathurst Jewish Centre, taking part in special-needs groups led by qualified instructors and educators. He volunteered for many of those years leading, inspiring and motivating those less fortunate than himself. This affable young man was a mentor to his special-needs peers who constantly looked to him for encouragement and motivation.
In June of 1992, Lonnie was chosen to be honoured by the JCC at their annual sports celebrity banquet for his many years of service in his volunteer field. That evening, his proud family celebrated with him as he was honoured by Bruce McNall, the late John Candy and Wayne Gretzky (in absentia), while his trophy was presented to him by Eric Lindros.
In order for you to put into perspective the type of individual Lonnie was, and how he presented himself as the epitome of strength and self-assurance etc, I ask you to watch the following brief video presentation where you can watch this young man ad lib his way through the description of the value and importance of the special-needs department at the Bathurst Jewish Centre.
Video presentation.
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Mr Clemens: That's just a glimpse of Lonnie the way he was. We just thought we should show it.
As Lonnie approached 25 years of age, my wife and I realized that we must plan for this young man's future while we were still alive, to ensure that he would have a home and responsible people to provide the support he would require in a suitable setting.
Having selected Reena as the agency with a philosophy in which we believed, Lonnie moved into an apartment shared by two other men in October 1991, where he remained until August 1992, when he moved into a less structured, semi-independent living environment, a two bedroom apartment. With the assistance of the counsellor to assist with banking, shopping and other areas requiring guidance, Lonnie and Stuart set up house and a new life for both of them.
Lonnie was also capable of holding down a four-and-a-half-hour, five-day-a-week job at McDonald's. This opportunity was afforded him by an employer who was both stern and kind, expecting him to adhere to rules and regulations. Just six weeks before he died, a surprise party was held for him celebrating eight years of loyal service. He made a touching speech thanking his McDonald's family for their patience and guidance through the years, pledging to continue for many years.
Thus far, you see a young man possessing incredible strengths, but there was, however, another side to Lonnie -- his weaknesses. These included phobias, fears -- especially of doctors -- anxieties, psychological hangups, inability to comprehend time, and most of all, his inability to cope with illness and to understand his body.
At this point, it is appropriate to attempt to define the term "developmentally challenged" and to make you aware of the many degrees of difficulties and limitations which are prevalent in this population depending upon the situation they face.
The term "developmentally challenged" describes a complexity of behaviours combined with different degrees of intellectual impairment, as well as emotional and social dysfunction. It is unfair and impossible to place developmentally challenged individuals into one category with respect to their capability to understand and appreciate consequences when faced with major decision-making.
Considering that many developmentally challenged are non-verbal, have any provisions been made in the new legislation which would suggest a practice to follow to ensure that proposed treatment, especially in emergency or urgent situations, be expediently carried through without the prerequisite of calling and awaiting a rights adviser? In many cases, when a developmentally challenged individual enters a hospital, even though they may appear capable of understanding a proposed treatment, it is essential that medical personnel listen to family and/or primary caregivers who can provide essential information about the patient.
It is therefore extremely important for health caregivers to have an awareness, recognition and possess education with respect to the developmentally handicapped. In Lonnie's case, he was capable of making minor decisions relating to issues excluding health care, with guidance and assistance of his family and social worker. However, when faced with any matters or decisions relating to health care, especially hospitalization, and fears brought about with respect to treatment, he would regress to a small child, act inappropriately and be unable to understand and appreciate treatment being offered to him. The aforementioned was his demise.
The following portion of my presentation will deal with various recommendations stemming from the recent inquest revolving around the circumstances and events contributing to Lonnie's death which are relevant and apply either directly or indirectly to certain aspects of the HCCA, especially with respect to the developmentally challenged community.
Recognizing capacity or incapacity has become a prime concern and must be dealt with adequately and carefully in the new Health Care Consent Act.
Listed as two of eight definitions of "capacity" taken from Webster's New World Dictionary are, "(a) the ability to contain, absorb, or receive and hold; and (b) the power of receiving and holding knowledge, impressions etc; mental ability."
With respect to the developmentally/intellectually challenged, it is imperative that a clause be inserted in the informed consent subsection 10(2), part II, stating, "a person is able to understand the information about the proposed treatment, appreciate the consequences of having or refusing treatment or of making no decisions, and is capable of explaining in his or her own words what the health practitioner has set out."
Considering the determining capacity of the developmentally challenged can become an extremely complex procedure and the consent legislation should be amended to allow health caregivers to delegate capacity assessments when they are beyond their expertise in this regard.
Recommendation 11: It is recommended that the proposed legislation define "capacity."
Recommendation 15: It is recommended that substantive issues such as the determination of capacity and the exceptions to the definition of treatment in the HCCA be set out in the body of the legislation and not embodied in the regulations.
Recommendation 29: It is recommended that in any new legislation, special care must be taken to define in a comprehensive and clear way the following: What are the situations in which capacity must be assessed?
Recommendation 29: It is recommended that in any new legislation, special care must be taken to define in a comprehensive and clear way the following: What is an emergency?
One proposal to achieve these goals would be to define an emergency in terms of a person who is apparently experiencing significant pain or ongoing discomfort or is at risk of sustaining bodily harm.
Health caregivers must be capable of recognizing when an emergency exists, thereby treating patients in a timely fashion, as well as immediately addressing the subject of incapacity if the occasion arises.
Delays in patient care: In the May 1995 issue of the College of Physicians and Surgeons' Members Dialogue, only three weeks having elapsed since the proclamation of the Consent to Treatment, Substitute Decisions and Advocacy Acts, Dr Walker explained the reservations the college had about many aspects of the acts and the fact that they, the college, were besieged by doctors expressing frustration and concern about the serious difficulties they were having providing care to some of their patients. Specifically, the college had become aware of a number of cases in which necessary medical care had been inappropriately delayed by virtue of physicians and other health care professionals complying with the legislation, which had proven to be unnecessarily cumbersome and complex.
Dr Walker went on to say that, ironically and tragically, the most seriously disadvantaged members of our society, ie, those vulnerable individuals whose interests were to have been protected by the legislation, in fact had borne the brunt of its negative effects: specifically, elderly persons and developmentally challenged adults living in the community semi-independently.
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Recommendation 9: It is recommended that a clause setting out the statement of purpose should be put into the HCCA to explain that the act has a dual purpose, that being the preservation of patients' rights and to facilitate timely treatment for persons incapable of giving consent.
Recommendation 12: It is recommended that the one-week appeal period set out in the Consent to Treatment Act following the Consent and Capacity Review Board's confirmation of incapacity be eliminated to permit immediate treatment.
Substitute decision-makers: My wife and I support the fact that people's rights must be protected and wishes honoured, especially with respect to the developmentally challenged, as long as they are capable of understanding and appreciating the consequences. At the point, however, when a developmentally challenged individual is incapable of making those decisions and has been assessed as incapable, supportive family and friends should be the primary substitute decision-makers.
Recommendation 22: It is recommended that any changes to the health care consent legislation retain the following principles: the respect for the right of an individual to make their own decisions to the greatest extent possible; the supportive family and friends should be the primary substitute decision-makers where this is necessary.
Plain language: Judging by health caregivers' uncertainties about the Consent to Treatment Act and the lack of adequate preparation and training about the legislation, it should be in everyone's best interest for Bill 19 to include the following: All rules and regulations should be in simple language to facilitate comprehension and minimize difficulties in interpretation.
Recommendation 6: It is recommended that in drafting new legislation, there should be a genuine attempt to use plain language.
Education of health caregivers: Despite the tragic loss of our son, my wife and I have committed ourselves to joining forces with Reena on a task force in an attempt to find ways to educate health caregivers about the developmentally handicapped, recognize difficulties they possess and how to deal and communicate with their families and primary caregivers. The government should adequately prepare health caregivers and health facilities with sufficient information and time to be knowledgeable in all facets of the legislation.
Recommendation 8: It is recommended that adequate funding should be made available to assist affected health care practitioners with education and training for the HCCA, the proposed new legislation, especially before it is implemented.
Recommendation 20: It is recommended that health practitioners coming into this province from other jurisdictions should be required to be trained immediately in the assessment of capacity and the Health Care Consent Act.
Your undertaking in the rewriting of this complex legislation ensuring that no further tragic deaths occur as a result of it could be Lonnie's legacy.
I thank you for the opportunity to address this committee. Respectfully submitted, Ben Clemens.
Mrs Elinor Caplan (Oriole): It's nice to see you again, Mr Clemens. It's important that you appear before this committee and share your experiences. As you know, I've been very concerned about what the impact of this legislation might be. I have a copy of the findings of the inquest. If they have not been tabled with the committee, I will do that, and I hope that the government will in fact draft amendments to implement all the suggestions that have come out of the inquest.
You've raised one that would take a little time, but I hope they will do it and I just wanted to go on the record as saying we would support that, and that is rewriting the legislation in plain language. It is important to do that so that people, both caregivers and families and anyone who has an interest in knowing both what their rights are and also what they can expect, can understand it. When you read this legislation, particularly the referrals to other sections of past legislation, it's very complicated. I don't know if you want to say anything further on the need for plain language.
Mr Clemens: I think it's very important that people really understand what they're reading. The past act -- or it's still the present act until it is changed -- you really had to decipher every word to get to know what it meant and even lawyers had problems, so you could imagine the problems that the medical staff had.
Incidentally, in everyone's brief there is a copy of the recommendations from the hearing.
Mrs Caplan: If you look at the legislation that's before us, I think there are many places within that legislation where the language could, and should, be simplified. That wouldn't change the content or the meaning of the legislation, and we would support that prior to third reading and would give our approval now that if the government did that, we would not delay the process in any way, because it is extremely important that you have legislation that people can read.
You've also addressed the issues of the need for education and training. I think that's key because the existing legislation that's before us, the new acts, does not give a mandate to anyone for the purposes of education and training under the legislation. While I think the government has a role, I also think there are bodies perhaps that could do it better, whether it's the Consent and Capacity Board, the PPAO, Psychiatric Patient Advocate Office, as well as I think organizations such as Reena and others in a partnership, that could be very effective in making sure that that message is taken out. I wondered if you had a view as to whether it should be only government or whether we should involve as many people as possible.
Mr Clemens: It should definitely involve as many people as possible. In fact, one of the things that came out at the hearing, as I mentioned in this brief, is that in the medical establishment, doctors come from all over. They spend six months in this place, six months in another place, and especially those coming in from out of province really had no idea, number one, that there was such an act as the Consent to Treatment Act, and when they finally found out, they didn't understand it; they didn't know what it means.
It was also suggested that even in the medical school it can't do any harm to teach upcoming doctors that there is an act and what the act consists of and how to understand it, and especially how to assess capacity.
Doctors were taking it upon themselves, whether they knew how or they didn't know how, to assess capacity. Lonnie, for example, I call him a yes man. Whatever question you asked him, everything was yes. If you had given him Einstein's theory of relativity and asked him if he understood it, he would say yes.
Doctors have to be trained how to properly assess capacity. They cannot go in on their own assumption, because they ask a person, they pick up a thermometer and say, "Do you know what this is," and they say, "A thermometer." "Oh, he's got capacity."
Mrs Marion Boyd (London Centre): Thank you very much for coming. I know how difficult it is. I should say to you that obviously the intention of the existing legislation was as you state. The intention always was to make sure that people did give informed consent but also to do timely treatment, and it's very unfortunate that your tragic circumstances have served to show us that we didn't accomplish that in that legislation. So I really appreciate that you're trying to help us to come to the resolution of some of those problems.
I personally think your addition around informed consent that you have on your page 6 is excellent. I would suggest that we probably need, in the last line of that, to be talking about, "and is capable of explaining in his or her own words, or in whatever means of communication the person uses."
Mr Clemens: Correct.
Mrs Boyd: I think you would agree with that because what the health practitioner has set out: I think that would be the test, wouldn't it, so that people couldn't glibly answer yes or no and they would have to show that they really appreciated that. I think that would help everybody.
Mr Clemens: Definitely.
Mrs Boyd: I agree with your concern around the definition of an emergency, and I see it from both sides. I see that in your case, the kind of problem that you were facing wasn't defined as an emergency, although many of us, in talking about this situation, have said we don't understand why not. So I think some addition to that is necessary. But I think often from a patient's point of view, we have to be sure that "emergency" isn't used to cover situations where in fact it isn't an emergency. So it's a kind of double-edged sword.
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On this plain language thing, I'm not sure it's ever possible to make legislation completely comprehensible to people, but I think the obligation of the government, particularly given the difficulties we've heard people come in front of us with in terms of understanding this, is to have some kind of a plain language explanation of exactly what is implied by each of the sections. It would be very helpful. We did that with the Substitute Decisions Act, but it wasn't done with the Consent to Treatment Act, and I think that created some real difficulties.
Rather than trying, because it's incremental legislation, to make that into the kind of comprehensive thing you're talking about, because I don't think that's going to happen in a timely fashion, making sure there's a plain language guide to it that's going to be useful to both patients and health care professionals, so we're all using the same words and the same definitions and we all have the same information we're working on, would probably be the helpful line. We know that lawyer's language and doctor's language and laypeople's language are very different things. What we need to be doing is make sure that we're all using the same words to describe things. I think that's what you really want to accomplish.
Mr Clemens: Absolutely, yes.
Mr Gary L. Leadston (Kitchener-Wilmot): Good morning, Mr Clemens. Personally, I extend to you my deepest condolences on the loss of your son. Today, and I think during the whole process, you've displayed tremendous inner strength that we can all learn from.
I'm rather inquisitive in terms of the recommendations of the jury and in one point that's contained in your submission. It's number 25: "It is recommended that there must be adequate protections for vulnerable persons which allow them to challenge both the finding of the incapacity and the treatment decision. The extent of these protections should reflect the seriousness of the treatment and the scope of the substitute decision-maker's powers."
I'm interested in knowing your opinion in terms of what occurred. Is it your sense that ultimately the physician or a physician has to make a determination regardless of the legislation? Do you feel that the physician in that case should have followed the medical procedures to relieve your son's symptoms?
Mr Clemens: He certainly should have followed whatever medically had to be done, but if he wasn't sure what had to be done, as in this particular case, and never took it upon himself to inquire with somebody who's higher up to ask for any advice or any instructions -- everything that the doctors did in this particular case was all assumption; they were assuming that this is what should be done, according to my estimation. I remember as a youngster everybody used to tell me, "Don't assume," and they used to spell it out why you shouldn't assume. This is what happened in this case. They ended up being just what the assume stands for.
Mr Leadston: On a second point, in terms of the obligation of the health practitioners, do you feel they should have an obligation towards the patient or the person who has been found to be incapable, that they have a right to have that finding reviewed?
Mr Clemens: Yes, they should have that finding reviewed, definitely, but within a time limit, though, not seven days later, a week later.
The Chair: Mr Clemens and Mrs Clemens, I thank you for attending today and for your courage.
JUSTICE FOR CHILDREN AND YOUTH
The Chair: The next submission is Justice for Children and Youth, Cheryl Milne, staff counsel.
Ms Cheryl Milne: I apologize to the committee for not having a written brief for you. Our time constraints didn't allow it. I'd be quite happy to summarize what I am going to say today and provide that later.
I'd like to just briefly introduce Justice for Children and Youth to the members who may not be aware of what we do. We're a legal clinic that is funded through the Ontario legal aid plan that represents young persons under the age of 18 in all areas of law that affect them. We do young offenders' work, but we also do a lot of work with respect to health care, children's mental health and that sort of thing.
We presented written briefs on the Consent to Treatment Act and many of the recommendations we made in those briefs are still true or recommendations we still endorse. If you want to review those briefs, they were submitted in 1992 to the standing committee on administration of justice at that point. I will review some of the recommendations, but that document is still relevant to the legislation we're looking at today.
Our organization also strongly endorses the recommendations and concerns that were expressed in the material filed by the Advocacy Centre for the Elderly. I won't repeat all those recommendations, but we can say that we strongly believe that many of those recommendations also affect young people.
What I would like to do is just focus on our major concerns with respect to the new legislation. Our first concern is with respect to the repeal of the Advocacy Act and the absence of provisions for rights advice to a person deemed incapable. It's our recommendation that someone must be required to communicate the finding of incapacity and the right to a review of that finding to an individual who has been deemed to be without capacity to make a decision.
Young persons are particularly vulnerable in this area. They are generally accepting of adult authority. The image of the omnipotent adolescent refusing necessary treatment, although it exists, is not representative of youth in general. Without the requirement that the young person's rights be communicated to them, we are going to just see young people's rights being run roughshod over. I think there's going to be a serious charter challenge to this legislation if there is not some mechanism for communication of the rights of that person when they're found to be incapable of making a decision around their own bodily integrity.
I was listening to the submissions of the previous people regarding plain language. I think that fits with the obligation to provide rights advice or the communication of the person's rights at the time of finding of incapacity. I think the plain language applies in that area. The legislation the way it's written now just applies to the health care providers. You're not going to find a young person who's going to go and look up the act. You're not going to find very many people who are going to go look up the act to see what their rights are. They're going to be faced with a situation and told that there's a decision made, and at that point, without knowing that there's a piece of legislation that governs them, without knowing that they have a right to appeal the decision if they don't like what's happening, you can have all the plain language you want, but it's never going to be read.
Also inherent in the rights of the individual is the aspect of education and training. It's not just for the health care providers; it's for the people who are in the institutions who are going to be affected by the decisions made under this legislation. There should be a mechanism for training, certainly for the people involved in providing the health care, and again we submit that there has to be some kind of advocacy role within the legislation.
Without it, there is no real check on what the health care providers are doing, or, not necessarily assuming that they're going to make a bad decision, we have a whole list of substitute decision-makers who are going to be making decisions about these young people and about anybody under the legislation that there needs to be a check on as well.
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With respect to parts III and IV of the legislation, it currently, as worded, doesn't apply to persons under 18. It seems to be focused on the elderly. Our question is, will the definition of the care facilities be expanded to include residential settings for children? That's unclear.
If it does, and if that's going to happen, and obviously it would be done under the regulations, we share the concerns of the Advocacy Centre for the Elderly regarding the competence of evaluators in respect of the admissions procedures, also the concerns about the personal assistance plans regarding restraints and that sort of thing, because these are things that are used against young people quite often. We see restraints being used sometimes against the elderly for their own good, but we also see restraints being used against young people in residential settings all the time.
Right now, we don't have a clear set of guidelines around consent issues to the use of those restraints in respect of behaviour modification and that sort of thing for young people. At this point, it's unclear that the legislation will apply, but my concern is that we're going to see regulations that just include a whole host of children's residential settings without much input.
Another concern we have is the definition of "treatment." At this point, it excludes treatment that poses little or not risk of harm. In my view, that's much too broad in terms of an exclusion. We feel this could potentially include very intrusive procedures: for example, an internal gynaecological exam. That was one of the issues we brought up under the last Consent to Treatment Act in terms of the importance of allowing someone to be able to consent to those kinds of examinations. That's just one example. I have serious concerns about how the definition of "little harm" or "little risk of harm" is going to be developed and who's going to be making that decision.
We also have concerns around the conflict of emergency treatment. Our concerns actually apply equally to the current Consent to Treatment Act in that a person under 16 is never able to control the treatment because their wishes while capable can be overridden. If you have a 15-year-old who has been deemed capable and has been guiding their own treatment up to a certain point, and then it reaches an emergency stage, and it may be part of an ongoing medical condition but it now reaches an emergency stage, and they have clearly expressed wishes not to undergo a specific type of treatment, those wishes can be overridden under the current legislation and under Bill 19, because those wishes do not govern.
It's our concern that if you are going to treat someone as being capable, why do you set an arbitrary age by which they're no longer capable or their wishes no longer matter, when they mattered all the way up to a certain point? The common example that's used is a young person who may have certain religious convictions that would preclude them from having a blood transfusion, for example. Another example might be a young cancer patient who is just tired of all the treatment and is maybe terminal and just doesn't want to go through any more procedures and has clearly understood the ramifications of refusing treatment.
With these kinds of emergency treatments, obviously, we're talking about the right to refuse treatment, because in fact that's what the real issue is with young people, their right to say no to certain kinds of treatment. That's the kind of issue that tends to get people really upset, when we see a young person who may be saying no to a treatment that other people think is in their best interests.
Another major concern we have is in respect of the makeup of the Consent and Capacity Board. It's our recommendation that it should remain a three-member panel, at least one member to have expertise in capacity issues. When youth are involved, then one member should have expertise with young persons, because we think that their issues are specific to them, and incapacity issues with young people are not the same as capacity issues for the elderly or for an adult.
Again, we reiterate the recommendations that the Advocacy Centre for the Elderly has made with respect to the procedural aspects of the hearing in terms of allowing the chair to establish certain uniform procedures, so that someone going before the panel knows what procedures they have to follow, so that there is some uniformity and some predictability about the process.
Another major concern for us is with respect to the conflict with the Child and Family Services Act. We sat on a panel under the Consent to Treatment Act to look at those areas of conflict. One thing that the process in developing this legislation has not provided is any consultation with the people who are working with young people in this area of the law.
The current bill allows for a one-year wait before the act takes precedence over the CFSA. That was the same provision that was under the Consent to Treatment Act. Why do we need another year? It's my submission that the basic provisions of the Consent to Treatment Act have not been modified that greatly, except for the rights advice. I certainly see some improvements in Bill 19. There were some holes in the earlier legislation, but in terms of the right to make your own decision, that clearly has not been altered in terms of the basic principle. The mechanism for it and whether or not that's a right that's going to be exercisable has certainly been altered in Bill 19, by taking out the right to be informed of decisions made about you, but the basic principles are still there. So I don't see why we need to have yet another year where the CFSA would take precedence over the consent legislation.
There may be areas in which there's conflict. The only direct area of conflict is with respect to psychotropic drugs, and it's always been our submission that the consent-to-treatment legislation should be the governing legislation when it comes to medical treatment of children in care and that the CFSA is a process which doesn't really lend itself quite easily to the consent-to-medical-treatment issues that you see under the Health Care Consent Act or the Consent to Treatment Act. They are separate.
It also has always been our submission that there shouldn't be blanket authority given to institutions such as the children's aid societies to consent to medical treatment on behalf of crown wards or people within their care, that that has to be looked at individually. The legislation, the Child and Family Services Act, clearly provides that the only authority that the children's aid societies have is that which a parent would normally have, and the Consent to Treatment Act makes it clear that you look at the young person first. It's only if they're incapable that you go to the next level.
Overall, it's our submission that the revised legislation is a step backward for human rights and for personal autonomy. Although it states the basic principles that the Consent to Treatment Act did regarding those issues, it takes away the basic mechanisms for a review, for an appeal of decisions, and does not provide for the informing of the individual of decisions that are made about them, as well as their right to appeal those decisions. It allows for serious abuses and is definitely, in our view, in danger of a charter challenge.
Just to reiterate some of the recommendations that we made under the earlier legislation, we had recommended that the health practitioner should be required to advise all persons regardless of age, and under the previous legislation there was the cutoff of 14, of the right to appeal a finding that the person does not have the capacity to consent to treatment.
It was our recommendation, and there were guidelines established under the regulations, for the procedures for determining capacity. Again, that needs to be looked at with this legislation as well. Some of those guidelines have been incorporated, and I think that's helpful, but I think that the regulations under the Consent to Treatment Act carried more detail and were more helpful.
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The act should provide that the minor be informed that one refusal to treat does not necessarily constitute an absolute ban to treat, that they can actually go and seek advice from another health practitioner.
One of our earlier recommendations was that the act should apply to persons regardless of age. That is one positive thing about this legislation, the fact that an actual cutoff, arbitrary age has been removed. So we're not saying that everything is bad about this. Our organization would prefer to see amendments to the Consent to Treatment Act.
One of the other concerns that we have is that we've heard a lot of comments about the confusion out there, within the various institutions that are trying to implement the legislation, about how it should operate; doctors not knowing what test to apply and that sort of thing. I think that establishing yet another piece of legislation that they have to now read and go through is going to confuse things even more. I think that it's just going to create more problems and that we should maybe look at the Consent to Treatment Act and keeping that as the base, not throwing it out and saying, "Now we have a new piece of legislation." I think you're just going to create more confusion and the potential for more problems, like we heard with the last speakers. Those are very serious concerns that we have.
It is our submission that an advocate should be appointed for all children in care, meaning children in the care of children's aid societies who lack capacity to consent to medical care regardless of family involvement. The office of the child and family services advocate does provide that kind of advocacy to some extent. We think it should be clearly established in the legislation, whether that be an amendment to the Child and Family Services Act or incorporated into the Health Care Consent Act.
Again, as I said earlier, the composition of the Consent and Capacity Board should be specified within the legislation to include a member with expertise in the specific treatment for which the consent is being sought, as well as members with experience with the age group of the applicant; so that when you have a young person who is going before a panel, you have one member on that panel who has some expertise in dealing with youth, whether that be a paediatrician or a psychologist or someone who has dealt with capacity issues for young people.
Those are my submissions and I invite any questions.
Mrs Boyd: Thank you very much for coming. Where you talked about a minor child always having an override to their wishes -- under 16 -- did you mean because the Child and Family Services kicks in?
Ms Milne: No. The way the current legislation works, the Consent to Treatment Act as well as the proposed legislation, if there's an emergency situation -- well, the emergency situation is the one that's most clear -- and the person's found to be incapable, their wishes, if they were expressed while they were capable, govern. That's not true if the person expressed those wishes when they were under 16. Even though they were capable, if they were under 16 their wishes do not have the same force and effect that they would if they were an adult. There is the exception that the wishes have to have been expressed when they were 16 or older. You can take into consideration their wishes, but they do not govern.
Mrs Boyd: You would like to see it be the same for anyone who is deemed capable.
Ms Milne: That's right.
Mrs Boyd: So that's the change that you want see there. Moving on to the Child and Family Services Act, you're suggesting then that because we've already had some experience with this, the additional year's wait where the Child and Family Services Act takes precedence over the Health Care Consent Act be waived, that that just be deleted.
Ms Milne: That's correct. I think it's unnecessary.
Mrs Boyd: So there would be no period of time in which there is the override by the Child and Family Services Act.
Ms Milne: That's what our submission is, yes.
Mrs Boyd: Beyond April 3, I guess.
Ms Milne: The provisions are not that different in terms of the way the two acts would work together. Right now we have some uncertainty as to how the CFSA and the Consent to Treatment Act work, because it's not clear that one really takes precedence over the other. The Child and Family Services Act doesn't really speak to consent and the Consent to Treatment Act, where there is any kind of conflict, is not going to take precedence until the one year has elapsed. So we've had some difficulties and there has been at least one case that I'm aware of in which there was a problem in that area.
Mrs Boyd: But your suggestion is that the Child and Family Services Act permit a children's aid society to act only in the role of a parent under the Health Care Consent Act.
Ms Milne: That's correct.
Mrs Boyd: Not in a different role; in the role of the parent.
Ms Milne: The scenario that I can describe is one in which a children's aid society may feel it has to step in to consent to medical treatment that's being refused. If it's being refused by a young person under the age of 16 who is capable of making that decision, then the children's aid society basically has no role because it's that young person's right to refuse treatment. We don't want to see an override of that person's rights. If the young person is not capable and a parent has to step in to make that decision and the parent is refusing to consent to treatment, for example, or refusing to provide the treatment necessary, then you fit within one of the definitions of a child in need of protection. That's a different area. It should be made clear -- and I think this is something that should be looked at with the Child and Family Services Act -- that the right to consent should be limited to what kind of problem you're dealing with, as opposed to a blanket right given to the agency in that situation. It should be specified depending on what the specific problem is and why they've stepped in to begin with.
Mrs Boyd: That would require changes to the Child and Family Services Act.
Ms Milne: It should be done in practice anyway, but there have certainly been situations in which the courts have ordered a blanket sort of okay to consent to things without limiting it.
Mrs Helen Johns (Huron): Do you believe there should be an age of consent stated in the legislation?
Ms Milne: No.
Mrs Johns: Okay. You talked about part IV and children's residential settings, the rumour, if you will, or the expectation that in the regulations we could move out further than the three areas we talked about. I think, from what I was following, you would be against our moving out further with children's residential settings. Can you talk a little bit about the problems you see with that and how you see that evolving?
Ms Milne: Actually, I never stated that I was against that. What I'm concerned about are the same kinds of concerns that have been expressed by the Advocacy Centre for the Elderly in terms of how that works. There are some aspects of the provisions, part III and part IV, that would be very helpful in children's settings, so I'm certainly not saying they shouldn't be; I'm just asking that it be made clear. Is it going to apply or not? If it is, then we can look at how that is going to affect young people now as opposed to somewhere down the road when it's included in a regulation and there isn't the same kind of consultative process.
Certainly with respect to personal assistance plans, I think that can be very helpful the way the legislation is set up. It can be very helpful for young people so that we know what is being consented to when either a parent consents on behalf of a young person or the young person is in a position to consent themselves. We see the use of restraints on young people where the consent issue, whether or not there is consent, is pretty grey, and the people running the facilities haven't really directed their mind to those kinds of issues. It's not that we're against this act applying. In fact, we probably would be in favour of legislation like this applying to children's residential settings; we just want some certainty now.
Mrs Johns: From the Ministry of Health perspective right now, we're not talking about anything more than the three issues, but of course that regulation would be in the act and it would be available for, not only us, but any party that came after, to be able to expand that. I guess that's where we are right now, not with an intention to immediately come out with a regulation that expands it.
Ms Milne: Certainly with respect to treatment, a lot of those residential settings do provide treatment, so obviously the act would apply to those aspects. It's just the other things, the grey area, the soft area, if you will; we would like some certainty as to how that applies.
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Mrs Caplan: Many of the issues that you raised have been addressed. Justice for Children is very well-respected organization. Were you consulted by any of the ministers prior to the tabling of this legislation?
Ms Milne: No, we weren't. We were in the previous legislation, the Consent to Treatment Act, extensively, but not with this.
Mrs Caplan: I share your concern that so much is done by regulation, the impact of that. The question I have for you about that is, we're going to be proposing an amendment that would require all regulations to be gazetted, made public for four weeks before they are made law. Would you support that kind of an amendment to the legislation?
Ms Milne: Certainly. We would support anything that allows for some sort of consultation or at least some feedback before something becomes law.
Mrs Caplan: I've been thinking quite a lot about the issue you raise around single panels. The conclusion I've come to is that the chair is responsible for deciding whether it will be a single panel or multiple panel members. The chair is also responsible for the selection of who will conduct a single panel and the act fetters the qualifications that are required. It's very restrictive as to who can be a single panel representative.
Given the challenges of distance but also given the needs of some individuals to have a less intimidating environment, I can see where a single panel would be appropriate on some occasions as long as there was a way of holding the chair accountable. I've thought a lot about it. I haven't spoken to this issue until this point in time, but it was your comments, actually, about the special needs of children. I think they would be quite intimidated in a place where you had five members of a panel when they had to appear. I know that has happened. We listened to Sick Kids about them taking it to Sick Children's Hospital.
You can try and convince me but I don't think you can, because I've now come to the conclusion that a single panel may be in the interests of vulnerable people, as well as the issue that the government has been raising about the needs of distance. As long as the chair is held accountable for the selection of the single panel member, and of course you can appeal to the courts the finding of any of the panels.
Ms Milne: I'm sure that's much more intimidating than anything, so if a young person has to go to that step, I think we're well beyond looking at the needs of the vulnerable person.
Mrs Caplan: If your organization, for example, had a concern about a hearing or an appointment of a panel, you would have the opportunity to make those representations on their behalf, would you not?
Ms Milne: I question what you mean by having the chair accountable. Is it after the fact? I mean, the damage has already been done, to some extent. Also, I've sat in a number of tribunal situations in which there has been a three-member panel, sometimes more. In the education system, in order to obtain special education you sit before an IPRC, which often has five or six people.
Mrs Caplan: Not the child.
Ms Milne: When we represent them, the child is there.
Mrs Caplan: I've been there where the child is not present.
Ms Milne: It depends on the circumstances, but what I'm saying is that it's an intimidating process anyway. I think the safeguard of having three panel members is that you have broader expertise. It's pretty hard for the chair to appoint somebody with all the expertise I've just described in one person. You're going to have one person, who's travelling around the province maybe, making all these decisions, and I don't think that's feasible.
Mrs Caplan: On that one I think I'm going to have to disagree with you.
The Chair: Thank you, Ms Milne, for your attendance.
Mrs Johns: On a point of clarification, Chair: I'd like to give some of the ministry's explanations to the Clemenses on how they think they've handled them in the HCCA, so everybody can have a feel of how the ministry feels they're handled. Then you can decide if that's appropriate or if you'd like to make some statements.
Mrs Boyd: Could we have these tabled and then have an appropriate discussion of the tabled responses?
Mrs Johns: So, for example, the first one is recommendation 11. You would like me to say this section, I think, handles it, on a piece of paper. Is that what you would like me to do?
Mrs Boyd: Yes, sure.
CANADIAN BAR ASSOCIATION -- ONTARIO
The Chair: Our next submission will be the Canadian Bar Association-Ontario, Elena Hoffstein and Adela Rodrigues.
Ms Adela Rodrigues: Thank you. Good morning to everyone. My name is Adela Rodrigues. I'm a co-vice-chair of the Canadian Bar Association -- Ontario's health law section. On my right is Deborah Tarshis, who's also a member of that section and a lawyer at Weir and Foulds. I should add that I'm a designated capacity assessor under the Substitute Decisions Act. On the far right is Margaret Rintoul, who is a member of the trusts and estates section of the Canadian Bar Association -- Ontario, and she's a lawyer with Carson, Gross and McPherson. On my left is Elena Hoffstein, who is the chair of the trusts and estates section of the CBAO and is a lawyer at Fasken, Campbell and Godfrey.
First of all, on behalf of the CBAO health law and trusts and estates sections, I would like to thank Mr Harnick for putting forward Bill 19. We're certainly supportive of the government's effort to clarify Ontario's laws and reduce bureaucracy with respect to consent to treatment and substitute decision-making, but we do have some concerns and issues we would like to address with respect to the bill as currently drafted.
We will be presenting those concerns and issues as follows: Ms Tarshis and I will deal with those that relate to the proposed Health Care Consent Act, 1995, then Ms Hoffstein and Ms Rintoul will deal with those issues and concerns relating to the proposed amendments to the Substitute Decisions Act, if that's satisfactory.
The first issue that we'll be dealing with under the Health Care Consent Act relates to the protection of the rights of vulnerable persons and is addressed at page 5 of the written submissions from the CBAO.
The health law section notes that sections 9, 38 and 55 of that proposed act provide that where a practitioner or evaluator has found a person to be incapable, nothing can be done unless the person's substitute decision-maker has given consent on the person's behalf, which is fine. However, those sections do not require that the person be advised of the finding of incapacity or of his or her right to make an application to the Consent and Capacity Board for a review of that finding.
It is the opinion of the health law section of CBAO that a system that purports to protect vulnerable persons fails to meet its objective when it neglects to provide a means by which a person can be advised of his or her right to challenge a finding of incapacity. There must be provision for vulnerable people to be independently advised of their rights.
To just unpack that a little bit, it's important to have a system that permits treatment decisions to be made on behalf and in the best interests of those who are mentally incapable, and that's been a recognized principle in law. However, that must be balanced with the fact that persons who are found to be incapable are going to represent traditionally vulnerable groups such as the elderly or those with psychiatric or developmental instabilities.
When I say "vulnerable" I mean such things as abuse, discrimination and undue influence. The wielding of a finding of incapacity can perpetuate that vulnerability and certainly that is acknowledged by this bill to the extent that it continues to provide a mechanism by which a person can appeal a finding of incapacity. But such an attempt at balance is useless if the person found incapable is denied the protection of being advised of that label that's being placed upon them or is further denied the opportunity to be in an unbiased way advised of their right to challenge such a finding.
These same considerations apply, I submit, with respect to findings of incapacity under the Substitute Decisions Act, and that is directly addressed by the trusts and estates section in the first paragraph of their submission at page 8.
Ms Tarshis will deal with the rest of the health-care-related submissions.
Ms Deborah Tarshis: The next issue that we address is the definition of "treatment." The definition of "treatment" excludes "personal assistance service." A personal assistance service could include certain controlled acts, for example, inserting a urinary catheter. It is not clear presently where the government intends to require informed consent where a controlled act forms part of a personal assistance service.
Our next issue deals with informed consent. The person responsible for obtaining informed consent is the health practitioner who proposes the treatment. There are, however, practical difficulties as to when and by whom informed consent is to be obtained. For example, when the person who orders the treatment is not in contact with the person who is to receive the treatment, who is responsible for obtaining consent? Or when the physician orders an X-ray but the medical radiation technologist who is to apply the X-ray may be more familiar than the referring physician with the risks of radiation, can the technologist assume that informed consent has been obtained?
The health law section recommends that a health practitioner who proposes treatment be defined by Bill 19 and that more thorough guidance be incorporated with respect to the role of health practitioners who do not propose treatments but who administer treatments.
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The next issue deals with opinions of health practitioners. Section 23 deals with the administration of treatment in an emergency without consent. The health practitioner is required to form certain opinions before treatment can be administered. With respect to subsections 23(2) and 23(3), the practitioner is required to note in the person's record the opinions held by the health practitioner. With respect to subsection 23(4), which deals with an examination or diagnostic procedure which can be performed without consent in order to determine whether there is an emergency, the health practitioner also has to form certain opinions but it is not required that the health practitioner note such opinions in the person's record.
It is the view of the health law section that the requirement to note the opinions in the person's record should also be applicable to an examination or diagnostic procedure.
Our next issue deals with admission to a care facility. Section 44 of the bill sets out situations in which an admission to a health care facility cannot be authorized, that is, where the incapable person intends to apply to the Consent and Capacity Board to challenge the finding of incapacity or where the incapable person intends to apply to the Consent and Capacity Board for the appointment of a representative. An exception to this requirement is for a stay of a definite number of days. However, "a definite number of days" is not defined and could constitute an exorbitant length of time for a person who is being admitted to a care facility where he or she does not want to be.
Lastly, we'd like to address the definition of "restrain." Section 6 of the bill preserves the common-law duty of a caregiver to restrain or confine a person when immediate action is necessary in order to prevent serious bodily harm to the person or others, but there is no definition of "restrain."
It is the view of the health law section that "restrain" should be defined in the same manner as "restrain" is defined in the Mental Health Act.
Ms Elena Hoffstein: I will start by saying that the trusts and estates section supports the amendments that have already been introduced which will reduce the level of bureaucracy associated with substitute decision-making while retaining protections for vulnerable people in order to deal with those cases of abuse in the population. We support the legislation which sets up systems which work for the general population while allowing for protection where abuses exist, rather than legislation that is directed at the worst-case scenarios and forces all cases into the same mould.
My comments this morning will address some of the submissions that have been made, and I'll just highlight some of them. The first is on page 8 of the submissions and deals with the repeal of the Advocacy Act. We welcome the repeal of the Advocacy Act as a move towards simplification of the system of establishing a substitute decision-maker. However, in the absence of advocates, we believe that vulnerable people still need a mechanism whereby they can discover their rights in the overall process.
We therefore would like to suggest that the certificate of incapacity that must be provided to the person found to be incapable should have as part of the required format a clear statement of the rights of appeal that are available to the individual and how such an appeal can be instigated. Individuals found to be incapable under the Health Care Consent Act should also be provided with some form of advice as to the finding of incapacity and the rights of the person who's found to be incapable.
The second comment which we would like to underline is also found on page 8 and it deals with the amendments simplifying the witnessing requirements and elimination of validation for personal care powers of attorney. We support the repeal of the witness attestation requirements which are set out in subsections 10(3) and 48(3) of the Substitute Decisions Act. We have found that these witness attestation requirements are too onerous. In addition, we are concerned that witnesses might be drawn into litigation in the future as potential defendants if they witness the execution of a power of attorney in circumstances where it was subsequently established they should have had reason to suspect that the grantor was incapable at the time the document was executed. In light of these requirements, we have found that many financial institutions and health care providers have adopted policies which preclude their employees from acting as witnesses. These policies have made the execution of these documents difficult and costly.
We therefore commend the proposed changes reducing the potential liability of such witnesses and reducing the costs and difficulties of execution. The change means that the witness attestation requirements applicable to powers of attorney are consistent with those applicable to other documents, such as wills.
We also agree with the elimination of the restriction preventing a child of the grantor from acting as a witness to the power of attorney. We feel that adds nothing to the safeguards the legislation has put in place for the benefit of grantors.
A third point I'd like to make is that we commend the elimination of the complicated validation process for powers of attorney for personal care. We have found this process to be cumbersome, time-consuming and costly, and question the related benefits.
I'd like to move to a definition of "treatment" and the regulations regarding release of information. We support the revision to the definition of "treatment" found in the Health Care Consent Act. The revised definition clarifies that treatment does not include the assessment of a person's capacity with respect to treatment or an assessment under the Substitute Decisions Act of a person's capacity to manage property or of a person's capacity for personal care for the purposes of the SDA or the assessment of a person's capacity for any other purpose.
We believe this proposed amendment eliminates the necessity of a court application in circumstances where a person cannot give consent to an assessment. We would like to suggest, however, that further amendment be made to assist health care providers in dealing with the confidentiality concerns in other legislation that applies to them, and we believe that regulations should be considered to ensure that professional obligations of assessors as assessors and their obligations to their individual professional bodies are not in conflict.
I'm going to move to opting out of statutory requirements, found on page 13 of the submission. The Substitute Decisions Act imposes a number of duties on attorneys and establishes a standard of care which must be met when carrying out those duties. We have found that clients are surprised when they are advised of these provisions and the onerous burden that the client is potentially imposing on a family member or friend who is asked to act as an attorney. In addition, many of the soft duties which are imposed upon attorneys are based on assumptions concerning family units that may not be relevant or applicable in cases of many clients. As a result, many clients would like to have the opportunity to eliminate or modify some of the duties which are imposed. At the present time there is nothing in the statute that permits opting out of these provisions of the SDA.
We would therefore recommend that the Substitute Decisions Act be amended to expressly permit a grantor of a power of attorney to opt out of these provisions if he or she considers it appropriate in the circumstances. We point out that an individual is entitled in most circumstances to specify the standard of care and obligations imposed on executors of their wills or trustees of inter vivos trusts that they establish. We feel that a grantor of a power of attorney should be similarly entitled to do the same thing in the context of a power of attorney that he or she is granting, and we see no justification for the current inconsistency in the law.
The last point I would like to make is on page 14, and it relates to revocations of powers of attorney, a technical point. The current legislation provides that a continuing power of attorney is revoked when a subsequent power of attorney is executed. Many clients execute limited forms of powers of attorney with their banking institutions and other financial institutions without realizing the potential adverse impact on a general power of attorney which they may have earlier executed. And this is, as I said, done inadvertently often and without recognition by either the institution or the donor of the power of the effect of signing the limited power of attorney.
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We would like to recommend, therefore, that there be further amendment to provide that it's only when a new general power of attorney is executed that it revokes a prior general power of attorney.
I conclude by stating that we support the government's commitment to protect the interest, dignity and autonomy of vulnerable people. We support the proposed amendments which have been referred to in our comments and further in our submissions, and we are grateful for having been given the opportunity to identify practical and cost-efficient solutions to the problems we've encountered in our practice. Thank you very much.
Mrs Johns: I just have a couple of questions about the health section of it. In the admission to a care facility on page 7, you suggest that we should have a definite number of days that we allow someone to stay in a centre as a result of crisis. How many days would you people recommend?
Ms Tarshis: We don't have a specific recommendation. We think thought needs to be given to put some definition to that, otherwise any number of days is a definite number. It could be 482 days. That is a definite number of days.
Mrs Johns: So you just want to see a definite number of days in this section?
Ms Tarshis: We want consideration to be given to that issue.
Ms Rodrigues: I don't think we understand quite what the point that was trying to be addressed was by the exception. If you could provide us some insight into that.
Mrs Johns: The thing that comes through in your presentation, I think probably the loudest in the health section, is the issue of the health practitioner telling people about incapacity and giving them rights advice or telling them where they can go from there. I'm somewhat surprised by that as a result of the fact that health practitioners in a number of cases believe it should be regulated through the colleges, through guidelines by the colleges, and in fact you have the same kind of system where you have a college that regulates you also, and so I was surprised that you may be implying here that colleges who set up guidelines wouldn't be substantive enough. Are you suggesting that by what you're saying in this area?
Ms Rodrigues: We were talking about the number of days and --
Mr John L. Parker (York East): Let me help you, because we're talking about two things here. Your question was about the number of days. I think the answer to that is to distinguish between a temporary stay and an indefinite stay, where you put somebody in for a defined period of time versus putting somebody in indefinitely. So think of that when you read that section. But the question that was just asked was on another subject --
Ms Rodrigues: No, I know that, I just wanted to make sure we understood that because of what of Ms Tarshis said. We were concerned because the principle of days is significant in providing a right to somebody. The three days may not seem like much to you, but it can seem like a lot if someone desperately does not want to go a particular facility. That's why we just wanted to clarify that for any future reference.
But what we were talking about with the college, did you want to address that in terms of --
Ms Tarshis: What I don't understand in the question is, are you dealing with the comment that deals with setting up a system where vulnerable people are made aware of their rights under the act? I'm not sure there's any obligation under the act imposed on health practitioners to make a vulnerable person aware of the finding of incapacity or aware of their rights to appeal that finding. We're not expressing a view as to what the best system would be to do that under the act, but we do feel that it should be addressed.
Mrs Johns: So you believe it should be actually in the bill, it should be part of the legislation, that there is some need to do that? You don't think it can be done, for example, through the health practitioner's act where the minister says to different colleges that they have to prepare guidelines that their members are accountable to?
Ms Tarshis: If what you're saying is that the government intends by regulation to impose that obligation on health practitioners, that would be one system of dealing with that.
Mrs Johns: It isn't regulation.
Ms Tarshis: I'm not aware of any current obligation, either in this statute or in the Regulated Health Professions Act or in the specific acts governing the specific health professions that would impose an obligation on a health practitioner, absent either statutory or regulatory requirements to do so, to advise patients of the rights under this statute.
Mr David Ramsay (Timiskaming): Thank you very much for your presentation. It's very thorough and for me it has brought up some points that haven't been brought up before. I think the government should be listening to these and I hope they are.
I have one question on the rights advice, because I agree with you for sure that obviously somebody who has been found to be incapable should be informed, and also they should be informed of their rights to appeal. But you also say here, and I'm not sure how we're going to do that yet -- and I think the government may move on this; I certainly hope so -- there must be a provision made for vulnerable people to be independently advised of their rights. With the Advocacy Act being repealed, who would you propose maybe do that? What mechanism should be employed?
Ms Rodrigues: Because we haven't heard all the interest groups' submissions, and because that has so much to do with policy and economics and that sort of thing, we didn't come up with a specific plan. We'd be happy to be involved in assessing the different options that come up.
I think it's a consideration that must be addressed when looking at the different systems. For instance, if you're saying the health practitioners are going to be doing it, are we looking at issues of bias? Are we looking at the issues that directly affect a vulnerable person under those circumstances? We have to realize that what we're trying to do here is create a balance. There's no point in creating this whole system of obligations and duties and everything if we don't have a balance, a balance of protecting that person who truly is incapable and sitting there with their money in a bank and starving and not getting proper decisions made or whatever -- balancing that with protecting them from being abused.
You also want to look at the doctor-patient relationships that exist and all that sort of stuff and how that works, but you do have to look at those issues. That's what our concern is today, to make sure those principles that have been espoused through the courts and through our laws are represented in whatever is finally determined as a viable rights advice service.
Mr Ramsay: Without making it too complicated, what I'm thinking about is that if the health care practitioner would be mandated through statute to bring forward that information and then it be duly noted on the chart possibly so that we have some documentation. But we don't have forms, get it as complicated as it is today, but at least make sure that it is given and noted. Maybe you might want to think about that.
Ms Rodrigues: I think anything is a start. Obviously, that's better than nothing, certainly. I'm not saying that's totally inappropriate or anything, but you do want to make sure: Is that practical? Is that something a physician is going to be able to do? When you're dealing with a health practitioner, you're dealing in a best-interests model. They're under certain stresses and obligations, and there's family. Are they going to feel that they can give rights advice in an objective manner? Can they divorce themselves from the relationship they have on a clinical level, "I told you this now. I think you're incapable. Here are your rights," and be able to stand back and just note it and see what happens and that sort of thing?
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I'm not equipped to answer that, but raising that question and looking at it, that's satisfactory because you're questioning exactly what we're questioning: Is that going to be enough? That takes a lot more in-depth looking. Also, there are the practical realities of what people have to face in those situations.
Mr Rosario Marchese (Fort York): Thank you for your submission. There are a few things that are useful in terms of your considerations around admission to a care facility and definition of restraint. I agree with that.
I have some serious concerns about your repeal of the Advocacy Act, on the other hand. It seems odd that such a body would say, "We support the repeal of advocacy." On the other hand, you say, "We're concerned that all vulnerable people be given access to some of the sources of advice and assistance." I'm not sure they contradict each other. What you suggest and what the Advocacy Act proposed is, in my view, very complementary.
The Advocacy Act was designed to assist elderly and disabled people who cannot speak on their own behalf to have a voice. That was the intent of it, and it remains my conviction that's something we need to do as a government. Your suggestions are complementary, not in contradiction.
Ms Margaret Rintoul: I think perhaps what has to be said is that, in a perfect world, an Advocacy Act provision might well be an ideal. In an imperfect world, with a lot of budget constraints and everything else, my colleagues and I were very concerned that the whole concept under the Advocacy Act just built up an enormous bureaucratic system that carried with it a great deal of expense, and to some extent the initial goal of making sure that vulnerable people had somebody to tell them that they had some rights got a bit lost in the whole bureaucratic system.
To that extent, in the case of legitimate private guardianship scenarios and statutory guardianship scenarios and treatment situations, the Advocacy Act very much got in the way of a lot of things that were needed at the time and still are needed. So for that reason, we thought it was appropriate to go on record that we did support the repeal of the Advocacy Act itself and the system and mechanism that it was creating.
I accept your comment that it is a little contradictory to say, "Well, somebody's got to give some advice." I don't think it's contradictory at all, because I don't think it's contradictory to say that you don't need an enormous bureaucratic body but, at the same time, you have vulnerable people who do have rights and who need those rights protected in some way. But do you need to protect them by creating this huge umbrella organization and body to do so? There's got to be a way that is a cost-effective delivery of those rights, that doesn't create its own empire.
Mr Marchese: Mr Chair, quickly, I want to state my profound disagreement with the rationale that she provides and that the others might be agreeing to.
Mrs Boyd: We disagree because of conflict of interest, basically. There's an inherent conflict of interest if the person proposing the treatment is the person who makes the decision of incapacity and the person who's responsible for giving rights advice.
The Chair: Thank you. Your half-hour has elapsed. We appreciate your coming today to share your wisdom.
CONCERNED FRIENDS OF ONTARIO CITIZENS IN CARE FACILITIES
The Chair: Our next submission is the Concerned Friends of Ontario Citizens in Care Facilities, Freda Hannah. Welcome, Ms Hannah.
Ms Freda Hannah: I was to be accompanied by my other advocate today, Eleanor Murphy, but Eleanor is ill and was unable to come, so I have Heather Graham, who is also a board member and helped write this brief.
I want to say good morning to all members of the committee and I want to thank you for giving us the opportunity to present this brief. We will be addressing only advocacy. We'll leave the other two bills up to the legal profession.
Just as an aside, I would like to say that the reason I have stayed with this organization for such a long time has been my desire to improve conditions in long-term-care facilities as a senior. After all, what I see when I look at long-term care is really a window on my future and your future.
Cognitively impaired seniors are the most disadvantaged group. It has been estimated that between 50% to 80% of residents in long-term-care facilities have mild to severe cognitive impairment. With about 56,000 residents in nursing homes and homes for the aged, we can readily see the number of residents who might need an advocate. This does not account for 12,000 presently residing in chronic-care hospitals, as well as the thousands who are living in rest and retirement homes. We must also include those being cared for in the community by their families and support services. Of course, population aging is on everyone's mind and demographics are constantly reminding us that there will be more old people, particularly those over 85. We are now looking at people who are in their 90s and 100 years old.
Concerned Friends is a volunteer consumer organization dedicated to improving health care in long-term-care facilities.
Our goals are to address the issues of quality care, both physical and emotional, and the general conditions facing residents in nursing homes, charitable homes and homes for the aged. This we describe as individual advocacy. We also want to bring concerns about conditions and quality of care to the attention of the provincial government and to work for constructive changes in statutes and regulations. This we call systemic advocacy. We meet with the residential services branch approximately once a month to discuss our concerns.
We also want to provide information to residents and their relatives concerning their rights and responsibilities under government legislation, and to teach family members how to advocate on behalf of their relatives, if this is possible.
The work of Concerned Friends is performed by volunteers, with the support of membership fees and donations. In order to retain an independent perspective on long-term-care issues, the organization functions without external funding.
Concerned Friends believes that there must be a responsive, effective and accessible advocacy system for residents in long-term-care facilities and their families. Residents and their families must have access to advocates who are trained to operate in the long-term-care system, funded by the provincial government and independent of any actual or perceived conflict of interest. Vulnerable elderly persons cannot rely on family members, facility staff or volunteers to advocate for them in all situations.
The general public is largely uninformed about long-term-care services in the community and the rights and responsibilities of individuals within the service delivery system. The public lacks information about ways to resolve problems within the system. We have had 15 years of experience in knowing that.
Many residents have no family. I think the nursing home association gave you these statistics as well. It's at the back of the report, Appendix F: In 8.89% of cases, or 4,894 residents, the family never provides assistance or the resident has no family. In 28.96%, the family is in contact with the resident at least once a year. You can see there are a lot of people without friends, relatives.
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Often, family members are so emotionally involved that they may experience difficulty in putting the needs and the wants of the vulnerable person in perspective. For example, some family members are handicapped and they in turn are trying to advocate on behalf of the resident. Family members may not be able to provide effective advocacy -- and this is what I was saying -- because they themselves are vulnerable. Family members may not know how to advocate or may be afraid to act for fear of reprisals against the resident. When I first started volunteering with this organization, I found that one of the most amazing parts, that people are afraid of reprisals. But I found it to be true.
Facility staff are dependent on the organization for employment and thus are unable to fill the role of impartial advocates. In fact, staff have called us asking us to be advocates for people, or even their advocates.
Volunteer advocates are too few in number to meet the demand. Without any legal status, volunteer advocates are limited in what they can achieve.
Concerned Friends has operated since 1980. The organization therefore has more than 15 years of experience with volunteer advocacy. Concerned Friends supported the concept of a formal system of paid advocates because it knows, through years of personal experience, that volunteer advocates are too few in number to meet the needs of residents of long-term-care facilities.
Currently we receive over 400 telephone calls each year, of which approximately one quarter, 100 calls, relate to concerns about quality of care, conditions in facilities or residents' rights. At present, Concerned Friends has only two members who are sufficiently trained to act as advocates and who are able to give advocacy activities the time they require. Two advocates are not enough to meet the demand. People from all across Ontario contact Concerned Friends. Many callers can only be given telephone advice because the time required to become personally involved in individual cases is enormous.
Despite frequent recruitment attempts, Concerned Friends has never had more than four advocates over the past three years. Therefore, we can't publicize what we do or look for people who may need our help because we could not meet the increase in the demand.
Concerned Friends lacks the resources that are required to recruit, train and supervise advocates to work in the long-term-care system. Recruitment would be challenging, whatever the resources, because of the time commitment required of volunteer advocates. Training needs are extensive. They include the full knowledge of the long-term-care system, the provincial standards for long-term-care facilities and appropriate community resources, which tells you that you have to be more than a friendly volunteer to do this kind of work if you're going to help the person.
Finally, in order to ensure quality service, a large group of volunteer advocates would require supervision and evaluation mechanisms which volunteer organizations cannot possibly implement.
In the following cases, we share some of the hopelessness felt by those unfortunate people who have been caught in a system which is unable to effectively ensure their wellbeing. The only help available for too many years for these individuals has been the efforts of volunteer advocates who attempt to respond, with resources inadequate to the demand.
The following story depicts some of the problems faced by many residents in long-term-care facilities and their families.
Diagnosed with a heart condition, congestive lung disease and little short-term memory, Jane was inappropriately placed on a heavy care floor where all other residents were suffering from severe forms of dementia. Already opposed to the idea of placement in a facility for the aged, it was impossible for her to adapt positively. An attempt was made to have her moved to another facility. She was later moved but to another inappropriate setting so that Jane returned again to the original facility.
By this time, Jane's condition had deteriorated and she required considerably more care. A three-week stay in hospital for breathing related problems left her unable to walk. She was quite confused and much more dependent. A relative who visited Jane told Concerned Friends that she was greatly concerned that Jane was not getting the assistance she required. She was often in distress.
On one occasion when the relative visited, Jane was in conflict with an aide who denied her bed was wet when Jane said it was. Two pads were wet; the aide stated only one pad was wet. Eventually, the aide acknowledged that two pads and sheets were wet, and we find this over and over, arguments going on that eventually lead to a lot of problems. The aide took her to the bathroom while the relative looked for a clean nightgown. There were no clean clothes despite the fact Jane had numerous nightgowns and the family paid for personal valet service. Despite this, several items of clothing disappeared.
On another occasion, Jane was found crying because she was cold. She was lying in bed wearing a thin blouse, sleeveless jacket and covered with a sheet. No one could explain why she was not dressed as there were clothes lying around.
Jane had fallen numerous times and was covered with open wounds and bruises. On one visit a relative found her lying on the floor in an open doorway. Despite many previous falls she did not appear to be restrained in her wheelchair. On this occasion and at other times she was not wearing underpants or hose.
Another resident in Jane's room is routinely left on the toilet for up to half an hour while the harried aide attends residents in other rooms. Residents are wheeled into the dining area and parked at a table over an hour before a meal is served. Staff talk to each other rather than residents at this time and there appears to be little effort made to talk to residents and orient them to where they are going. When a friend brought a light supper in to celebrate Jane's birthday, an attendant took Jane to the toilet. When the friend went to see why she had not returned, she found her undressed and in bed. This was at 6:15. Residents are in bed by 7, presumably for the benefit of staff, and we're the first to admit we feel there is a shortage of staff in homes for the type of people we're looking at today.
Jane's family described to Concerned Friends what they see when they are visiting and what they fear happens when they are not there. One attendant in Jane's facility stated that she had 13 people in her care. All the residents appeared to be disoriented and/or physically disabled and needed as much attention as an infant, yet it would be illegal to have the same ratio of staff to children in a day care setting.
Jane's family was told that Jane would adjust quickly to life in a long-term-care facility, and that due to her loss of memory she would find comfort and security in the routines. This was not the case and Jane was constantly asking what she did wrong to deserve such treatment. There were few staff available to provide mental stimulation, kind words or even rudimentary care.
It is difficult and heartbreaking for families to leave a relative in long-term-care settings. Jane's family told Concerned Friends that they and Jane all hope she will not have to live much longer if this is all there is.
I must say that in some cases families are professional people and they are overawed with what they deal with in some homes. We're not talking about all homes; we're talking about some homes.
They were unable to resolve their problems through meetings with the staff at the long-term-care facility or through bringing in the compliance adviser. When you notify the compliance adviser of a problem in a home, it takes two weeks for the adviser to get out to the home because they too are short of staff. They turn to us for help and we continue to work with the group. If the person, Jane, is physically able to move to another home, a better home, then we would help try to support that.
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I'm running a little short on time. In the case of Joe, I'll leave you to read that. We could write a book on this one. It took almost a year to get things sorted out.
I would like to discuss what is in the box, Sally was an example of an individual who is not capable of advocating, independently, on behalf of a relative. She came to me with her problems. I worked with her. Fortunately she kept a diary, so she had every incident documented, which was more than the staff had done.
We dealt directly with the residential services branch. We provided advice in dealing with the residential services branch. We indicated how to report incidents, maintain effective records of the events, and that means any staff names, times, dates and incidents that happened. We found another home for Joe. We met with facility staff, Sally and the local MPP trying to resolve these problems.
What happened is that some of the staff either left or were let go. When we initiated all these concerns or investigations, we found there were a lot of systemic problems in that home; there were many of them. So a lot of families were having problems. This is what we find usually; it's not just one family that calls us; there are a lot of families.
We do not promote firing staff. We prefer to see staff retrained or receive more training. We'd like the owners to take more responsibility in the staff they hire and then look at the kind of care that's being given in the home rather than have staff leave. We don't promote that.
We believe that there must be a responsive, effective and accessible advocacy system for residents of long-term-care facilities and their families. Residents and their families must have access to advocates who are -- we've mentioned all this before. Again, vulnerable elderly persons cannot rely on family members to -- we, as a group, would be happy to assist in the development of an effective advocacy system which would address the deficiencies of Bill 19. Please note that Concerned Friends has prepared a number of documents which suggest principles and features of effective advocacy systems and are available upon request.
We've included bios on our board of directors. This is the president's activities related to systemic advocacy; that's mainly what I do and what the board does. This is a great deal of work, because I'm retired and Heather works. There are only two board members who don't work, so we get to do all the going to meetings; they're always during the day. We're very busy in that way. We deal with all these people. Mainly it's for educational purposes and to make people aware of what's happening in the homes.
In the case of George Brown College, we help the staff prepare the curriculum, because we know what's going on. I review all of the compliance review reports where there are a lot of violations.
We have a copy of our annual report, and our publications mention that. We also have a list. We keep tabs on all those homes that are under enforcement. During 1995, there were nine homes under enforcement at various times. The total number of residents in these homes is 1,535. You may look at nine homes, not very many out of over 400, but when you look at the number of people who are affected by this, it looks quite different. Two of the nine homes have been under enforcement for one and a half years. In both homes, the enforcement officers are still reporting that residents are at risk under the personal care category. The total number of residents in these homes is 446.
The Vice-Chair (Mr Ron Johnson): Thank you, Ms Hannah. We've got time for some questions now.
Mrs Caplan: Nice to see you again. My question is, were you or Concerned Friends consulted by the ministers prior to the tabling of this legislation?
Ms Hannah: You mean the latest? No.
Mrs Caplan: I'm trying to find out who they talked to prior to the tabling of the legislation. They refuse to tell us who. Anybody I ask says no, so I'm becoming quite sceptical about if there was really any consultation; I suspect there was not. There is a consultation, sort of, taking place now under Marilyn Mushinski at Citizenship. I'm assuming you're part of that.
Ms Hannah: Yes, we were there.
Mrs Caplan: Were you told that there would be no new legislation as a result of that, sort of, in advance? I understand that was one of the principles.
Ms Hannah: Yes. There won't be anything that involves funding. We're willing to work. We didn't agree with everything in the Advocacy Act either. We had a lot of problems with some things. We feel that there is room for volunteer advocates, but we should be able to work with paid advocates.
Mrs Caplan: Coordination.
Ms Hannah: Yes. But you have to be trained. You can't be a friendly visitor and actually be an advocate.
Mrs Caplan: Actually, I share those concerns, and I also think that a shared advocacy model, where government's role was more in seeing that there was coordination and training, and identification of existing organizations and perhaps looking to fill in the gaps, is a much better approach than the cumbersome and expensive previous model. But I despair that the preconditions of the discussions that are going on would preclude that from happening. From what you're telling me, they're not likely going to see anything that would see government in a coordination role.
Ms Hannah: That was my understanding. Of course, we were very upset and very disappointed because my predecessor worked for 15 years for advocacy. We've been out in front of Queen's Park marching many times when we thought it wasn't going to happen. We had a lot of support from many people.
Mrs Boyd: Thank you very much for coming. I know you've been working on this for many years. I certainly have been aware of the reports you've put in, and I know how dedicated the organization has been to a form of advocacy that deals not only with the individual, which is what you are able to deal with, but that takes some government responsibility, as well as community responsibility, for the kind of systemic advocacy you do.
You've given us some very good examples. Unfortunately, in these examples, family were caring and loving, and in spite of that people found themselves in situations where the family didn't have the clout that they were able to deal with this. That's the real issue: unless there's someone who has legal access both to the client and to the records and the information, it's very hard to advocate on behalf of these folks, isn't it?
Ms Hannah: For example, in a second case where we would like to have been able to go to the doctors in the hospital and say, "What are you going to do now, because you've said this is wrong," we can't get information from them. What we find are doctors who will send residents right back into a home they've come from with problems and we can't do anything about that.
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Mr Frank Klees (York-Mackenzie): Thank you very much for your presentation and also for some of the specific examples that you've given to us. It's certainly very helpful. Maybe one of the things that we as members can do is, rather than sitting here, get out and visit some of these homes ourselves and maybe have some direct impact that way.
I want to thank you on behalf of the government for your willingness to participate in the stakeholders' meetings with us. I'd like to clarify perhaps a misunderstanding that took place at that meeting when you drew the conclusion that there would be no funding at all for advocacy. That is not the case. Certainly, it won't be $18 million under the previous circumstance, but we have stated very clearly that we believe in advocacy. What we want to do is work with groups such as yourselves and come up with something that's practical and affordable that addresses in a very real way the issues that you bring to our attention.
What I hear from you is that the need for coordination and education is critical. We look forward to getting some further input from you as to exactly what the role of government is going to be. I see you've got 600 members and you mention that only about two of them are adequately trained. I'm assuming that of those 600 members, some would be willing to participate and expand their knowledge to help us in this process.
Ms Hannah: We really work with the board. A lot of our members are seniors, and we've found over the last few years some of them can't even come out to our general meetings any more. So we do have our newsletter that we send out to everyone and try to keep people up to date. It's our board.
There are other groups throughout the province who have called me. The latest one was someone in Thunder Bay. They would like to have an organization like Concerned Friends, but they can't afford to come here and we can't afford to go there to help them out. It takes a tremendous amount of work just to get an organization started, because it is a really long commitment.
Mr Klees: So that area of coordination is something that perhaps you feel we could work together on.
Ms Hannah: Yes. I know there are other groups. There was a group in Windsor and a group in Ottawa at one time, but they just couldn't keep them going.
The Vice-Chair: Thank you for your presentation.
SURVIVORS OF MEDICAL ABUSE
The Vice-Chair: The next presentation will be Sharon Danley, Survivors of Medical Abuse. Welcome.
Ms Sharon Danley: I'm afraid I can't be quite as eloquent or pleasant in my preparation for today. I tried to take the rage and the anger that I see on a daily basis and bring it back to where it belongs. We're here once again before a Legislature that is a fascist-inspired body of lawmakers, hell-bent on assaulting the vulnerables: the poor, the elderly, disabled, women, children, victims, me, the women I represent and the children I love; once again another ominous bill, this time it's number 19.
For the record, I represent a group of women who have come from surgical violations and sexual assaults inflicted by the medical community, as well as character destruction, unconscionable diagnosing, drugging and human experimentation by their dangerous psychiatric brothers. Then they suffer further victimization brought about by out-of-touch judges, misogynistic defence lawyers and a court system that fails at every turn.
Next, they suffer the cascading effects of being brought into a social service system that humiliates, shames and degrades them further, and finally but certainly not least, a government that keeps ignoring their pleas for protection and rights to amend. But will you listen to our expertise and solutions? I think not. You see these women and children as nothing more than welfare leeches or psychiatric bums that bleed the good Ontario taxpayers' pocketbooks.
You would far sooner listen to your corporate, power-hungry capitalists and the economic agenda you both continue to market as your excuse to continue bulldozing any moral attempts at keeping our Charter of Rights and Freedoms intact. Yes, the Charter of Rights and Freedoms, that almost forgotten law which this country is supposed to be built on and stand for. Let's take a closer look at part of the charter just as a little refresher.
"15(1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination....based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability."
Bill 19 makes incredible changes to three pieces of legislation. It repeals the Advocacy Act, eliminates the Advocacy Commission, makes amendments to the Substitute Decisions Act and replaces the Consent to Treatment Act with the Health Care Consent Act. Can this government do anything in moderation?
For almost two decades, advocacy groups and consumers have recognized that many disabled adults and seniors are not being treated equally, and are more vulnerable to horrendous neglect and abuse because many are institutionalized. The Advocacy Act was born in 1992, out of this long-overdue need. You know that several reports have been commissioned and extensive studies done and they all state the same thing. The need is there and it is paramount: the promotion of respect for the rights, autonomy and dignity of all persons; the assurance of due process where one has the freedom to control one's own life and body; and the protection of the most vulnerable from abuse, neglect and exploitation. These are the cornerstones of the act and the charter.
Why do we keep coming here, wasting precious time and money, talking about what's already been discussed and pleaded for? It's quite apparent, as was shown during the Bill 26 public proceedings, that you all need to pay a visit to an ears, nose and throat specialist. The cries of the people aren't getting through to your grey matter. If you were listening at all, you wouldn't propose, let alone pass, this kind of draconian, irresponsible legislation.
There is nothing equal, fair or right about repealing the Advocacy Act.
"12. Everyone has the right not to be subjected to any cruel and unusual treatment or punishment."
The Substitute Decisions Act breaches the confidentiality of medical records in much the same way that Bill 26 does. Anyone just stating the intention of applying for guardianship can see a person's clinical file. Service providers can become the guardians of an incapable person's property. It is an open door for abuse. The incapable's finances could be stripped. Adult children can act as witnesses during the execution of power of attorney even when there is a conflict in the family as to the heirs of the estate. As well, nobody has to be screened before becoming a guardian.
But the most callous, sickening, disgusting part of this act is that it will no longer prohibit a substitute decision-maker from consenting, on the incapable's behalf, to the use of electroshock, or cattle prods, as aversive treatment.
Why in God's name does this government refuse to look at the cruel and unusual treatment in this appalling act?
"7. Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice."
The proposed Health Care Consent Act removes all references to rights advisers and eliminates the requirement that rights advice be provided to a person found to be incapable. This means that there is no obligation on a health professional to tell patients that they have been found incapable, what their rights are and that they can appeal this decision.
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The act permits emergency treatment without consent of a capable person if the communication required in order for the person to give or refuse consent cannot take place because of a language barrier or because the person has a disability that prevents the communication from taking place.
The act provides health practitioners with protection from liability in respect of decisions concerning treatment or admission of an incapable person to a facility for treatment.
The board is no longer required to sit in panels of three to five. One board member can sit alone, and they don't even have the expertise and evaluating capacity.
I can't for the life of me see "the right to life, liberty and security" in this one.
Once again without one penny of funding, our group cannot hire the legal minds to help us find our way through this massive, destructive bill in order to totally understand all of the nuances one must, so unfortunately, we cannot fully understand all the legal intricacies that we need to that this point. Therefore, we will not attempt to waste one minute in dragging out our pleas and compete for justification of our ideas on solutions.
You've heard it all before and no doubt you will hear it here again during these public hearings. Our solution, simple and to the point: Keep the Advocacy Act of 1992. Not only does it give minimal protection to our vulnerables, it creates jobs. Wow, what a concept.
As our neighbours just to the south of us experience, there is in every state, in all of them, a protection and advocacy office funded by the US government. As I said earlier, the Advocacy Act was created out of a great need, and a lot of time and money have been spent bringing it to fruition. Now you Tories want to just throw it out. How unconscionable of you; how immoral of you. How sad for us, our loved ones and especially the ones who have no one.
There will always be those politicians and lawyers who will twist and distort reasonable laws to suit their own agendas, but the proposals of this Tory government to make law out of Bill 19 outright sanction and foster these kinds of activities with a licence and a blessing.
I'll leave you with this thought to ponder: Remember, all of you are only one car accident away from being in a vulnerable, disabled position. You too could develop a neurological dysfunction or be violated into a traumatized state of mind. You too will be old one day and may lose most of your body functioning; you too will reap the legislation you sow if you pass this bill.
Thank you. That's all I have to say. If there are any questions, I'll be happy to answer them.
Mr Marchese: Thank you, Ms Danley, for the presentation. I understand the anger that you feel. I hope, for the members of government, that they can separate the anger to look at a number of points you've made that many others have made as well. Many have commented -- for example, on page 4 -- that one board member is simply inadequate. To leave the decision of one's life with respect to capacity or incapacity in the hands of one person is a problem. We disagree with that too. We believe in all cases you should have a panel of three people at least. We would be happy with three.
In terms of protections from liability with respect to decisions concerning treatment and so on, other people have raised this issue as well, so you're not the only one. Other areas that you have raised are many, and others have agreed with you with respect to confidentiality of medical records. "Service providers can become the guardians of an incapable person's property," and that's a conflict -- many others have said the same thing. "Adult children can act as witnesses during the execution of power of attorney" -- many have agreed this is a conflict and a problem and we should be dealing with that.
With respect to advocacy, countless people so far have agreed. There have been a number of them who haven't agreed; one of them today was the Canadian Bar Association -- Ontario. And some medical practitioners have come forward disagreeing with that. We, on the other hand, agree that we need advocacy and the government needs to be involved. They disagree; they said government shouldn't be doing advocacy. We think that if government doesn't do it, they're abrogating themselves from an important responsibility.
Ms Danley: Absolutely.
Mr Marchese: You probably have seen a number of abuses that have touched you and others close to you. That's why I think you're saying we need advocacy.
Ms Danley: Absolutely we need it. Even in one instance when I was in a hospital with my daughter, where I'm totally capable as her guardian, she was being pushed into a case where they wanted to use her for research. The doctor, talking to me, a capable person, slipped this through under another name, and only through investigation did I find out it was a drug I'd already told him that she should not be having. He tried to slip that through me as a capable person. Well, what about somebody who isn't? What about somebody who doesn't understand or doesn't have these rights or doesn't have someone to speak for them? I will speak, but a lot of other people are intimidated by law, intimidated by medicine, and they're told, "Just leave it up to us." My experience and that of many of those I represent is that that is dangerous, dangerous, dangerous.
Mr Marchese: A few other quick things, just to agree: The previous speaker talked about how family members may not know how to advocate or may be afraid to act, for fear of reprisals against the resident. Others say, "If we don't have right of entry, we have no authority to be able to correct where there are abuses."
Mrs Boyd: I want to thank you for quoting the Charter of Rights and Freedoms to us. It's very interesting that none of the legal professionals has actually done that. I think it's very important that we know that for consumers that charter is the watchword and the measure against which we measure justice in the country. I think you have pointed out exactly why so many of the groups that have come before us from the consumer point of view have said that this legislation will be challenged, and they are very clear about why it will be challenged. So I think it's a very good lesson to us that we need to listen to consumers. It's not surprising to me -- it won't be surprising to you -- that it's the professionals who have objected to the Advocacy Act; it's the professionals who have objected to rights advice; it's the professionals who have objected to all of those things that you've talked about that try to balance the power between the person who's at the mercy of the health care professions and the health care professionals themselves.
Ms Danley: It's been my experience too that any professional who operates truly professionally isn't bothered by an advocate at all. My experience has been it's only those with hidden agendas; the more hidden the agenda, the more they are against having someone speak on someone else's behalf.
Mrs Boyd: In fairness, we heard that too.
Mr Parker: Thank you very much for appearing before us this morning and assisting us with your views. Frankly, just to pick up on that last point, the message I take from the fact that the legal people who have appeared before us have not raised the Charter of Rights as a concern is that they don't see the Charter of Rights as being violated by this legislation. I suppose, if your message is anything to go by, we'll be put to the test and we'll find out in due course. But so far, that is not the message we have received from people who appear to have expertise in that field.
Ms Danley: May I ask you a question? How do you feel about it? Not your experts, but you as an MPP, as a person representing the public, how do you feel about the Charter of Rights and whether or not that violates it?
Mr Parker: I am comfortable with this bill and I do not fear a charter challenge.
Tell me something about yourself and your group. Frankly, it would be useful to me if I could put your remarks in some context, and yours is a group I'm not familiar with. You could just take a minute and fill us in on that.
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Ms Danley: Sure. As I explained in the first part of this presentation, I'm a co-founder of a group that started a few years ago called the Survivors of Medical Abuse, women who've been surgically, psychologically and sexually abused by a variety of health care practitioners. We came together to form a support advocacy group for a great need out there. We have advocated extensively with the College of Physicians and Surgeons on Bill 100, talking to legislators wherever possible, and we're a phone call in the middle of the night when a women is in trauma because of being revictimized -- and I use the College of Physicians and Surgeons because it's quite prominent -- through their victimizing, slanderous tribunals, their way of discerning justice, which is as archaic and barbaric as you can get. The only difference I see with them is that today we don't burn women at the stake; we psychiatrize them and give them Prozac.
It's been my experience and my colleagues' experience that we have the same running problems, the same running themes. We're not listened to. We tell you all kinds of ways to help, all kinds of ways to make things better, and everybody is taken into consideration except the victim in all of these cases -- except the victim. Even in their tribunal, a complainant has no party standing. The doctor does, but not the complainant. But she can have her medical records or psychiatric records made available for a defence counsel, a misogynistic defence counsel to rip apart and try to make out like she doesn't know the difference between a sympathetic touch and a sexual aggression. That's a very large aspect of what we're dealing with. As I said, the phone calls in the middle of the night, the trauma, the children's lives, the family lives that are affected by this; the cascading effects of this kind of immoral, twisted, distorted law.
We meet on a regular basis. We have no funding. We have tried for funding several times. The money that we use comes out of our own pockets. Somebody has to be there. We align ourselves with two or three of the other advocacy groups, the funding for one of which has been cut, and I don't know what's going to happen with them. We work alongside the Barbra Schlifer clinic. We work with NAC and Metrac and a number of the women's groups. We work together in all of this. I hope that answers your question.
Mr Parker: You spoke quite passionately about electric shock therapy; "cattle prods" you called it.
Ms Danley: Yes.
Mr Parker: We've heard from others on this subject. Can you just describe to us what it is?
Ms Danley: What do you think? Have you ever watched a western on TV. How would you feel if somebody came up to you with a prod? I don't even know what the voltage is. They touch with that. That's like being electrocuted. It's like if you put your hand on a bare wire. Your body would respond to that. Well, your brain responds, your body responds. They don't talk to you about the number of people who suffer damage from electroshock, who suffer loss of memory, who go into convulsive states. The downside of electroshock is paramount, but there are those out there who say that it works really well. Something where you're going to give massive electroshock to a body, to a brain, what, to jolt somebody out of some problem? Usually the problems are the psychiatrized diagnosed people are victims of assault in some way, they're victims of poverty, they're victims of poor legislation, they're victims because they're not being heard.
Mrs Caplan: Thank you very much for a very passionate presentation. Certainly I think you have everyone's attention and I think that it's important that we hear from organizations such as yours which are dealing with those, albeit I think few, in society who are truly victimized. We'd like to think that there are fewer than there actually are. We know that this legislation does not and will not, with the repeal of the Advocacy Act, as opposed to trying to fix and amend it to come up with something that is going to respond to those needs in a way that is more affordable and realistic.
You do ask a question, and that is, can't this government do anything in moderation? I think it's reasonable for you to have an answer. From my perspective, no. But I guess it's something that at least this time we have a government willing to hold these hearings extensively across the province. That was different than what they originally planned for Bill 26. Frankly, I don't think it is fair to compare this legislation to Bill 26. Bill 26 was far more extreme -- and I've used the word "ominous" -- in its policy implications.
Ms Danley: I can appreciate what you're saying. However, when you're talking to voices in the middle of the night, it certainly seems ominous to them.
Mrs Caplan: I don't dispute your experience.
Ms Danley: One other thing that I'd like to add: It would appear that there's a myth about that the people I'm talking about are few and far between or there are not that many. Let me dispel that myth here and now, loudly and clearly. There are a lot of people who do not come forward, who keep closeted, who keep quiet, who are in psychiatric prisons, who are in hospitals, who are in homes, who are pulling the covers over their heads, who are afraid to come out and talk. There are some of us who for some reason are able to, but there are many who don't, and to think that this particular factor of society is small is not a realistic point of view.
Mrs Caplan: Well, I want to go on record as saying that I don't think the Advocacy Commission and approach to advocacy as it was contemplated by the previous government would have been sustainable, simply because it was unaffordable and also it was extremely intrusive and caused a tremendous backlash from all of those who were covered by the legislation. I don't think that did a service to the vulnerable people in society.
So one of the things that I believe you have to come up with in the drafting of legislation is a mechanism that is affordable, sustainable, and something that everyone can feel is an appropriate way to proceed. Unfortunately, I think the intention of the new government to not bring in legislation, to not amend and fix this act and to rely wholly on organizations such as yourselves, is just as misguided as the previous costly and intrusive approach.
Unfortunately, I don't think that the process the new government is undergoing is going to result in something you will find acceptable, and I do believe that the cause of advocacy and the work of organizations such as yourselves and Concerned Friends, which were here before you, will be set back. I just wanted to share those thoughts with you. I really don't have any questions. There are some things in your presentation that I agree with and there are others that I don't. But that's what this is about; we're not going to always agree on everything. So I just want to thank you for your presentation.
The Vice-Chair: Thank you for your presentation.
JOHN DESIPIO
The Vice-Chair: The next presentation will be from John DeSipio from Blake, Cassels and Graydon.
Mr John DeSipio: By way of introduction, I am a lawyer and, as you said, I am a partner at the firm of Blake, Cassels and Graydon, where I have practised since my call to the bar in 1974. For the past 22 years my practice has either been exclusively or substantially in the area of wills, trusts and estates. I'm currently a member of the executive committee of the estates and trusts section of the Canadian Bar Association -- Ontario.
As a preliminary comment, I would like to express to you that in my view there is a fundamental lack of balance in the existing Substitute Decisions Act and that I believe Bill 19 is a very positive attempt to restore the balance between the rights of an individual to make choices respecting the management of his or her financial assets and personal care on the one hand, and the need to protect vulnerable persons on the other hand.
I believe the current legislation reflects an erroneous assumption that a majority of persons involved with incapable persons have improper motives. The current legislation imposes numerous procedural hurdles which are designed to protect rights, but experience shows that these hurdles in fact may deter care by causing delays and confusion, intimidating families in the process.
I believe there is an unnecessary degree of complexity in the current legislation and that Bill 19 is a positive step which will remove some of the complexities and barriers which currently exist and which will encourage both families and communities to be supportive and to become involved rather than abandoning that role to the government.
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I'd like to make a few specific comments on various sections of Bill 19. One of the most relevant from my practice as an everyday practitioner in this area is the "caution to witness" provisions in the current legislation, in sections 10(3) and 48(3).
I would support strongly the repeal of the witness attestation requirements for both the powers of attorney for property and powers of attorney for personal care as they are currently set out in those subsections. These provisions, which were introduced for the first time by the Substitute Decisions Act, have been interpreted by many to impose a very positive obligation on a witness to inquire into and then to satisfy himself or herself as to the capacity of the grantor to give that power of attorney. It is not clear from the wording of the current legislation that the mere absence of any belief to the contrary by the witness is sufficient. In my experience, few witnesses are prepared or indeed even qualified to make this assessment, and as a result, it is often difficult to find witnesses for a power of attorney because of the possibility of their being brought into litigation if the capacity of the grantor is ever put forth in issue. As a result of this requirement, I have been to several institutional health care facilities and financial institutions which have adopted rather rigid policies which prohibit their employees from acting as witnesses in these circumstances for these documents.
I would also note that if the existing provisions do in fact impose this positive obligation on a witness to be satisfied as to the capacity of the grantor, this calls into question the very practice followed by many practitioners of having a staff member act as a second witness to the execution of the document. In most cases, the staff member has had little or no previous contact with the grantor and cannot make the required statement as provided by the legislation. In this case, the execution becomes difficult, inconvenient and, unfortunately, often more costly.
The proposed repeal of these provisions by Bill 19, I suggest, will greatly simplify the execution of powers of attorney and will remove what is generally considered to be a very excessively onerous obligation imposed on witnesses. I would note that for execution of wills, there is no similar obligation imposed on witnesses, and in the case of wills, witnesses are not required to make this attestation which has been imposed on them by the existing Substitute Decisions Act.
I'd also comment on my experience with clients as to the child of the grantor acting as a witness to the execution of a power of attorney. The current Substitute Decisions Act provides that the child shall not act as a witness to the execution of his or her parent's power of attorney. I would note that there was no such prohibition at law before the Substitute Decisions Act was proclaimed on April 3, 1995; in fact, practice was in many instances that a child would have acted as a witness to the parent's execution of the power of attorney.
I am not aware of any evidence that the addition of this prohibition by the current legislation has reduced any perceived abuse. I think it is obvious that a child or any other person intent on the fraud of a vulnerable person will not be deterred by the need to arrange two other people to act as witnesses. I would suggest that a child should not automatically be disqualified because of a potential conflict position with respect to an inheritance from the grantor.
I would note very strongly that there is no prohibition on a child being the attorney appointed by the parent. The appointment of the child as attorney is obviously a much more powerful position than that of merely acting as a witness and a position far more capable of being abused. I suggest that no one would argue that a child should be prohibited from acting as the attorney for his or her parent. In my view, it would follow that they also should not be excluded from acting as a witness to the execution of a power of attorney by that parent. Unlike a will, a power of attorney deals with the management of the grantor's property and not the ultimate disposition of that property. A witness will not benefit from the power of attorney unless there is a fraud.
It's apparent that there is a tremendous need for all people, not just the elderly, to plan their affairs ahead of time, and I believe the current prohibition on a child acting as a witness acts as a deterrent to giving effect to such plans in many instances. Often the client is elderly, a shut-in or hospitalized and there are practical, everyday difficulties in arranging for people outside the family to act as witnesses, especially if the client is out of the city or in another remote area.
I believe the restriction which prevents a child of a grantor from acting as a witness to the execution of the power of attorney adds nothing to the safeguards that the legislation attempts to put in place for the benefit of the grantors. It's naïve to think the legislation can be drafted in such a way as to address all variety of potential conflicts of interest or potential for abuse, which could exist with any witness. My experience is that clients are frustrated and upset that their son or their daughter is currently prohibited from acting as a witness to the execution of the power of attorney, and our clients would universally welcome this amendment.
There has been some discussion, I understand, as to the possibility of imposing a requirement that a witness to a power of attorney execute an affidavit of execution, similar to that affidavit which is required for the execution of a will. Again, I would strongly discourage this requirement. The government has expressed an intention to simplify, rather than complicate, the process of executing a power of attorney, and to promote advance planning and not to deter it.
I believe that any requirement to obtain an affidavit of execution would not prevent coercion or fraud but would clearly complicate and delay the process and possibly even frustrate the execution of a power of attorney in some circumstances. I believe it would necessarily involve lawyers and an additional cost which would not otherwise be in place. Neither this nor any previous government has required an affidavit of execution for a power of attorney. I would not support any amendment to introduce this further complication, further delay and further cost which I believe would be necessarily associated with this change.
On the statutory guardianship of property, our clients would strongly support the repeal and replacement of the provisions of sections 16 and 17 of the current legislation. Clients are universally critical of the current procedure whereby the public guardian and trustee automatically becomes a statutory guardian for property in respect of an incapable person upon the issuance of the certificate of incapacity by the assessor, notwithstanding that the incapable person has previously given a power of attorney for property, frequently in the case of a spouse or child. Involvement of the public guardian and trustee in a person's affairs under such circumstances is viewed universally by clients as an infringement on their right of choice.
Bill 19 proposes a much less intrusive procedure by which statutory guardianship will be immediately terminated if the incapable person's attorney for property, under a continuing power of attorney for property, files a copy of the power of attorney with the public guardian and trustee, along with a signed undertaking to act in accordance with the power of attorney. This amendment will greatly simplify the procedure the attorney must follow to replace the public guardian and trustee as a statutory guardian and to commence or resume exercising the authority which was specifically given to the attorney by the grantor. If there is a concern that the public guardian and trustee needs to be able to step in where the power of attorney is being abused, I suggest that the Substitute Decisions Act has other remedies that will permit this. The public guardian and trustee has the powers to apply to court or to conduct an investigation of any such allegation under the current legislation.
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Bill 19 also proposes to expand the category of persons who can apply to replace the public guardian and trustee as the incapable person's statutory guardian of property. I would strongly support these changes, which would allow any relative of the incapable person, and not just the immediate family; the incapable person's attorney, under a limited power of attorney; or a trust company nominated by the incapable person's spouse or partner to replace the public guardian and trustee as a statutory guardian. These changes will facilitate the replacement of the public guardian and trustee and avoid the expense of a more costly court process to remove the government officials.
Bill 19 also proposes a change with respect to the mandatory requirement of security where a private applicant has applied to replace the public guardian and trustee. The current legislation provides that an application to replace the PGT as statutory guardian "shall" be accompanied by security. We would strongly support changes in Bill 19 which introduce a discretion with respect to the statutory requirements. It is obvious that it may be appropriate, given the particular facts of an individual case, that security in certain circumstances should be dispensed with, or, in the alternative, the amount of security should be released.
I understand that some bonding companies are currently having difficulty negotiating the appropriate form of bond satisfactory to the public guardian and trustee and are, in certain circumstances, unwilling to issue bonds without cancellation clauses, to which the public guardian and trustee has objected. To the extent that the proposed change gives the court more discretion, we support the changes that Bill 19 introduces for increased flexibility.
Court applications for guardianship: The changes suggested by Bill 19 again would be strongly supported. Experience is very clear that clients are universally critical of what they perceive to be the government's interference with their personal affairs. Bill 19 is a very positive step forward, as it makes it clear that the public guardian and trustee is to be appointed as guardian only as a last resort where there is no other suitable person available and willing to be appointed.
As to the validation of the powers of attorney, I am not aware of a single instance in our office where a client has wished to proceed with a very complicated validation process. Accordingly, again I would strongly support the removal of this process. Clients are confused by it, not wanting it, and I think the changes in Bill 19 are worthy of support.
For disclosure of information, I'm aware that concern has been expressed about the potential for regulations under section 60 which will allow a doctor, for example, to give medical information about an incapable person's condition to another person, usually a child, who is applying for guardianship. I can appreciate the concern and the rationale for the concern, and I understand that the government is proposing to review and tighten up the language to ensure that the issue of confidentiality is protected, and this I would agree with. However, I wish to describe in real, practical terms the issues which make, in my view, this kind of authorization necessary.
The most typical application to court is for guardianship from an adult child whose parent has developed dementia and needs protection. Usually, there are doctors who have provided care for some time and who support the need to help the patient through the protection of guardianship. The doctors have this medical information confirming the patient's mental incapacity, but how does that information get to the court? The incapable person can't consent, even though they probably would if they could do so. To go to court in advance to obtain this consent to disclosure would obviously be a very costly and in my view unnecessary step. What happens in practice now? Doctors provide this information because there is really no option. However, they often express concern about their legal status in doing so. This regulation will bring some structure to the practice.
Overall, I believe that Bill 19 is a very positive step and will help those of us who practise in this area on an everyday basis overcome some of the difficulties. The Substitute Decisions Act is legislation which has evoked much comment among our clients. It is an area that is very personal to them. It is an area where they think they should be able to have a piece of paper whereby they appoint somebody to deal with their affairs, whereby they keep out those they perceive to be government officials, and I think that process should be as simple and as inexpensive as possible.
I believe the changes effected on April 3, 1995, gave the process much complexity and caused clients great concern, and I believe the position of Bill 19 is a step to help address those concerns and to have clients arrange their affairs in the manner they think they, rather than some other person, should be able to do, and in as simple and as inexpensive a process as possible. Thank you.
Mr Parker: Mr DeSipio, thank you very much for coming before us today and for assisting us with your obviously very carefully thought out and well-presented remarks. It is nice to have the support of someone knowledgeable and well schooled in the field. Your remarks before this committee carry great weight.
My friend on the other side, Mr Marchese, has been having a lot of fun with us by anticipating our remarks in response to some of the other presenters, and I'm going to see if I can play his game.
He's inclined to take the view that it's all well and good to streamline the procedures for the mainstream, for the well-to-do, for the people who are capable of taking care of themselves, but that as a government we've got to look after the vulnerable, the weak, the infirm, those who don't come from happy families that look after one another, those on the fringes who need the protection of extra legislation. He has been critical of this bill in that respect. Do you have a response to give to an argument of that nature?
Mr DeSipio: I'm certainly aware that the potential for abuse exists whether it's in wills or powers of attorney. My belief is that the provisions of the current legislation do not overcome those situations where there is going to be an abuse, where there's going to be a plan, something carried out. In fact, what happens on an everyday basis with clients is that there are difficulties and hurdles to overcome, and my conclusion would be that there are far more cases where the correct thing isn't accomplished because of the provisions of the current legislation than the rare case where the current legislation might protect an abuse. The attestation of witnesses, currently in the legislation, is an everyday practical problem for us. It's not in for wills, and I'm not sure that those who would suggest it be retained will be able to convince me that there is a benefit there that would outweigh the advantages of removing it.
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Powers of attorney should not be something available to those who go to big firms, who are wealthy, who are sufficiently intelligent or schooled. The government's intention has been to get this document out to everybody, that everybody should be able to have a power of attorney and to plan their affairs. My experience is that in a lot of situations, the child is the one who is most able to look after the elderly person, that it is a close-knit family, that one child might be the attorney, the other children might witness the attorney. In fact, with a safeguard whereby you make that person who only has family members try to get other people to come to witness a document, what you're going to end up doing in many cases is depriving that person of the actual document which is going to protect them.
There is no question that whether it be a power of attorney or a will, there is potential for abuse. I suggest the current provisions don't eliminate that but impose more hurdles, and clearly the legislation provides a mechanism whereby if there is an allegation of abuse, there can be an investigation conducted and the remedies brought before the court.
Mrs Caplan: I agree with the statement you made that access to powers of attorney should be as simple as possible and as inexpensive as possible. I always advise constituents and anyone who asks me that if they have substantial assets, they should have a will, they should have a power of attorney and they should see a lawyer.
Mr DeSipio: And I wouldn't restrict it to those who have substantial assets. I think they should all have a will, a power of attorney.
Mrs Caplan: For those who don't have substantial assets, I tell them they should have a will and a power of attorney, but they don't necessarily have to see a lawyer. Would you agree with that?
Mr DeSipio: I agree, and even those with substantial assets. It should not necessarily be only for lawyers to provide this kind of advice. Death and growing old are inevitable, and it should be something that everybody thinks about. If you have some wishes either to dispose of your property during your lifetime, on death, or to appoint somebody to care for that property during your lifetime, that should be an inherent right of everybody.
Mrs Caplan: I agree with that. I have some concerns, however, because the power of attorney for personal care is a new concept and people are just beginning to understand it. It is very different from a will.
Mr DeSipio: Correct.
Mrs Caplan: Most people don't realize that a power of attorney ends on your death and that's when your will takes over; therefore, you may want to have something different in your power of attorney or you may want the same thing, but you should think about that. The difference of a power of attorney for personal care is that the people you choose to make decisions for you could well be the people who will be heirs under your will. That could lead to abuse, as you mentioned, and that's one of the new features here.
While there are some safeguards around the obligation of the caregivers if they don't think the substitutes are acting in the best interests, and I agree with that, I've always felt it was not an unreasonable safeguard, and it was quite easy for those who went to big law firms, to have someone else there do the witnessing and for others to have either friends or neighbours or other family members.
But rather than getting into the prohibition against children, maybe the way to do it is to have a clause in the legislation that would deal with those who would have a financial interest as an heir under a will, if they have knowledge of that, or anyone witnessing, just as there's a prohibition against the attorney to witness. I wonder if you've given that any thought as a different concept that tries to anticipate the potential conflict which would lead to the abuses you mentioned.
Mr DeSipio: It is perhaps a possibility. I haven't addressed it specifically. I note your comment when you say it's easy for those who go to the big firms to get the second witness and the power of attorney. Again, I have problems with that. We bring a second person in from the office, very often a secretary, who is asked to sign this attestation. She's not comfortable with it. We're not sure this is the appropriate statement she can make. Is she supposed to sit down and make a positive inquiry into the capacity of the donor?
Mrs Caplan: There's no longer an obligation to do that. All you do now is witness the signature.
Mr DeSipio: Correct. That's what I suggest should be done, and that's great, as Bill 19 proposes to eliminate it.
Mrs Caplan: I agree. With that gone, you're only witnessing the signature; therefore, she wouldn't have any problem with that.
Mr DeSipio: Not at all.
Mr Marchese: Mr DeSipio, I want to spend a moment to tell you why I disagree with you on some general statements you made and then ask you a question or two on some other areas.
First of all, I disagree with you and the government and Ms Caplan as well with respect to your views about the commission and the Advocacy Act. When you say the bill restores rights to make choices re personal care and the need to protect vulnerable people, many people disagree with that. We don't think it does that, and that repealing the Advocacy Act, which contains in it the right of entry to deal with issues of neglect, exploitation and abuse, and to eliminate the rights advisers who would give advice to people who otherwise would not be getting it, is a serious deficiency. To eliminate the commission, which Ms Caplan also supports, which provides training, education, community development and work in areas of systemic abuse is a serious deficiency, something I believe the government needs to be involved in. I'm not sure we're restoring that balance at all. In fact, we are imbalancing it once again. That's my general comment on your initial remarks.
With respect to witness provisions and repeal of the witness statement, a number of people, quite a number, in fact, state that it is an important obligation to impose on the person witnessing it and is not an undue kind of imposition. You're saying that legalistically it sounds like it's too much of an imposition on people, but a number of people see that as a positive thing, as a reminder to those who are witnessing that this is a serious matter. How do we balance that interest? Do you have any other suggestions? Would the wording, for example, "a person who believes on reasonable grounds that," any kind of wording like that, provide some protection to a vulnerable individual or no?
Mr DeSipio: My position would be that there should be no statement required by the witness at the time of execution of the document. In my view, a will is a far more fundamentally important document -- it's disposing of property -- and we have no similar obligation with respect to the execution of a will. The common law hasn't imposed that obligation.
My experience is in going to visit clients, not necessarily all Bay Street clients, but a lot of elderly people -- hospitals; I was there last week with my secretary. It is very difficult to explain to a witness: "I would like you to sign this statement." What is "on a reasonable basis"? I appreciate the concern that maybe we could modify the language. It's just very difficult to get a witness brought in, whether it's my staff or somebody else at a health care facility or wherever, and get them to sign with what they perceive to be an obligation. If you deny the person who wants to sign the document because nobody else will witness it, that to me is a far greater disservice. I would rather err on the side of having the document in place and then having it perhaps questioned or challenged than to deny the person who wants the will or the power of attorney put in place because I can't get a second person who is comfortable making this statement or a reduced statement or another watered-down version. Clearly a watered-down would be better than that which is imposed on the witness now, but I still am concerned that it wouldn't be enough and I would rather have the document signed and let those who allege an impropriety allege it.
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The Chair: Thank you, sir, for giving us your expertise in regard to this bill.
Could I have five minutes of the committee's time? First, Susan Swift has obtained for us the head note of the case that was referred to the other day, "Richard B." If someone is interested, I'll deposit that with the clerk and you can obtain that from her.
I raised two matters, and Mrs Boyd wants to discuss them, the first being the potential amendments by Thursday. The standing orders, I'm advised by the clerk, provide that the amendments should be presented two hours before clause-by-clause begins, but there's some flexibility; that is not ironclad. I thought when I made the suggestion that we would have the amendments to review over the weekend.
Mrs Boyd: It's not that we disagree, Mr Chair, but we had no sense of whether everybody has agreed to this. If we all agree to that and put on the record that we all agree to that and make a commitment that by the end of Thursday we all will have everybody's amendments, that's fine. Normally, at least in my experience, caucuses sometimes want to say, "Yes, to the extent possible, but we still reserve the right, two hours before, if there's a change." It's not that I disagree. It's just that you dropped this into the middle of the room and there was no discussion and we had no sense of whether there was a commitment on all sides.
Mr Michael A. Brown (Algoma-Manitoulin): We certainly would appreciate having the amendments on Thursday. It would be very helpful to us. We cannot possibly say that we will have them all ready. We would hope that would be the case, but some of this obviously has to go to legal counsel to be drawn up and what not. It's of benefit to all members to have those available, but we obviously don't believe we should be restricted from further amendments if that's the case.
The Chair: I don't think we're trying to preclude. We're just trying to expedite.
Mr Michael Brown: Then certainly we would find that to be helpful.
Mr Parker: I think we can proceed with a "reasonable best efforts" understanding attached to your submission. We just do our best, and if something comes up late, it comes up late.
The Chair: The second point I raised is that the Chairman of the finance committee had requested that we remain in this room, although we were scheduled to move into the Amethyst Room next week for clause-by-clause. I take it they are considering the automobile draft bill, which is of wide public interest, and that was the reason for it. I request your instructions.
Mrs Boyd: Mr Chair, we have a question about that, given that we all have agreed here that far greater public education is required around the issues under these acts. I'm not sure it's in the best public interest that it not be accessible, particularly to disabled people who may be in their homes and may be able to see it. We certainly know from the presentations before us that from the first week, when we were televised, a lot of the people who subsequently presented have built their presentations on watching that.
Is this the only week the automobile insurance thing will be proposed, and is it clause-by-clause?
The Chair: I can't help you there, Mrs Boyd.
Mr Michael Brown: If my understanding is correct, they will be dealing with the automobile insurance issues. We have no objection to having the finance committee remain in the Amethyst Room. We believe we can go through the clause-by-clause here in an appropriate way.
Clerk of the Committee (Ms Donna Bryce): If I could clarify, the request to switch rooms was for this one week only. I believe we are scheduled to be in 151 again next week. If the committee wants to change that, I think the Chair had suggested that we remain here just for convenience and no other purpose.
The Chair: If there is an objection, we won't do it.
Mrs Boyd: I don't want to be difficult. Mr Chair, I want you to know that I would feel very sad if, because we were on television, we behaved differently than we have been behaving. I think it's really important that we have a clarity about our commitment to try to make this bill work as well as possible and that it not be a case for grandstanding. That's not the reason for my suggestion. If there is no good reason for us not to be in the room we were scheduled to be in, I think it would be foolish for us not to be there.
Mr Parker: I think in all of this we have to be mindful of the people we serve, and if there's one message I received loud and clear through the election, it's that there is a great deal of concern and apprehension about auto insurance in this province -- has been for many years. It's been the high-water mark of some parties' campaigns in the past.
The Chair: Mr Parker, I inadvertently misled you. It would seem that the room is vacant, so please do not use that as a consideration.
Mr Marchese: Next week it's vacant?
The Chair: Yes. So it's a matter of staying here or moving into a vacant room.
Mr Michael Brown: Could you help me in understanding how the schedule is arrived at in the first place for who goes where?
The Chair: The clerks scheduled us in room 151 on the basis that this is of some interest to those who have certain disabilities and that perhaps they would be watching TV and would be educated. That's an understandable premise. If you feel you wish to remain in 151, then we shall. Okay? Thank you.
The committee recessed from 1207 to 1332.
UNIVERSITY OF TORONTO
The Chair: Our first submission is made by the University of Toronto Joint Centre for Bioethics, Dr Singer and Dr Etchells.
Dr Peter Singer: It's a pleasure to be here with you. My name is Peter Singer. I'm the director of the University of Toronto Joint Centre for Bioethics. My colleague Ed Etchells is a member of the department of medicine at the University of Toronto and the Toronto Hospital.
I understand that one of the main issues that's arisen in these hearings has been the question of rights advice. This is the issue I'd like to focus on in this presentation.
Much important streamlining has been accomplished in the change from the Consent to Treatment Act to the Health Care Consent Act. The single largest change is the elimination of rights advice. I think this is a positive change. However, I can understand how your committee might be concerned about the elimination of rights advice and so I wish to explore this with you today.
My bottom line is this: Protecting the right of citizens to make their own health care decisions is extremely important. Legislated rights advice is the least effective means of achieving this goal and might actually be counterproductive.
I just want to make it very clear from the outset that I think these rights are very important; I think rights advice is very important. My only question is whether legislation is the appropriate vehicle for it, and I think the answer to that question is no.
What's the goal of rights advice? The goal of rights advice is to prevent capable people from being declared incapable. This is an extremely important goal. Capacity is a fundamental human rights issue. When a person is declared incapable, she no longer directs her health care decisions. The right that rights advice protects is the right to make one's own health care decisions.
How can the right of capable persons to make health care decisions be protected? There are at least four tools that can be used to protect the right of capable people to make their own health care decisions: Research, education, policy and legislation. They each have an important role to play, and I'll explore them one by one.
How can research protect the right of capable people to make their own health care decisions?
The initial assessment of a person's capacity under both the consent act and the Health Care Consent Act is done by health providers. I'd submit that the best way to ensure that capable people are not deemed incapable is to ensure that health providers assess capacity as accurately as possible. In this regard, my colleague Ed Etchells has made major research advances, I think, in developing a decisional aid to help health providers assess capacity accurately, and I'll now ask him to describe this research for you.
Dr Ed Etchells: We've developed and evaluated the aid to capacity evaluation and we've assessed its accuracy with regard to health providers' assessments of capacity. The ACE, which we've handed out, prompts health providers to assess the relevant domains of capacity. I'd just like to take you through it briefly.
On the first page are instructions to the health care provider on administering the ACE. On the next page are instructions for scoring, and then the next three pages are some samples for scoring. We train the physicians by exposing them to a standardized patient portraying a depressed person refusing surgery for gangrene. Subsequently are the scoring sheets for their actual patient when they assess their capacity. It prompts them to probe the seven relevant areas of capacity assessment and we give them space to mark down evidence or observations that support their assessment in each of the seven domains. On the next page the clinician is asked to give an overall impression, make any comments including indications for further assessment as they're required, and on the back are just some useful questions to guide the clinicians for probing each of the relevant domains.
We compared the results of health providers' assessments to the results of capacity assessments by two independent experts. Disagreements between the two experts were resolved by an independent adjudication panel. We found that ACE results of definitely capable or definitely incapable were very accurate, while results of probably capable and probably incapable were less accurate. We also found that health care providers were willing to devote the necessary effort to make the capacity assessment as fair and accurate as possible.
Our results suggest that health providers can accurately perform screening assessments of capacity using standardized instruments, such as the ACE. If the result of the assessment is definitely capable, then no further assessments are needed. If the result is probably capable or probably incapable, further in-depth assessments should be obtained.
Dr Singer: The next question is: How can education, the second of the available tools, protect the right of capable people to make their own health care decisions?
Since the initial assessment of capacity is made by health providers, it's extremely important that providers understand the human rights issues at stake and know how to assess capacity accurately. I'm glad to say we're making progress in this regard.
For instance, the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada -- and I'm using medical examples of health providers because those are the ones I'm familiar with; I'm sure that analogues exist in other areas of health provision -- organizations that accredit teaching programs for all specialists and family physicians in Canada, require ethics training as a condition of accreditation of these programs.
At the royal college, the bioethics committee has undertaken a project entitled the bioethics education project. The purpose of this project is to integrate bioethical knowledge and skills into the clinical practice of resident physicians enrolled in royal-college-accredited programs.
As part of this project, we've developed a teaching module on capacity. The module focuses on the human rights issues related to capacity, as well as the definition of capacity and how to assess it. We'll be distributing the aid to capacity evaluation Dr Etchells just showed you and walked you through and teaching resident physicians how to use it.
The next available tool is policy. How can policy protect the right of capable people to make their own health care decisions?
Rights advice is an area where health facilities can enact policies to guide practice. Two weeks or so ago, you heard Dr Alan Goldbloom from the Hospital for Sick Children speaking of developing rights advice policies and this Thursday you'll hear from Ms Margaret Keatings and Dr Neil Lazar from the Toronto Hospital about this issue as well. In addition to health care facilities, the professional colleges can develop policies on rights advice. Indeed, if necessary, under the Regulated Health Professions Act, the Minister of Health could require the colleges to do so. Policies are more flexible than legislation. Rights advice policies, as opposed to legislation, permit the development of varied approaches appropriate to each setting and sensitive to patient needs.
How can legislation, the fourth tool I mentioned, protect the right of capable people to make their own health care decisions?
The Health Care Consent Act, as did the Consent to Treatment Act, contains several important provisions with regard to protecting the rights of capable people to make their own health care decisions. It defines capacity in a very sensible way. It also creates the Consent and Capacity Board to review determinations of capacity.
But why should the Health Care Consent Act not include provisions for rights advice? I will not discuss the issue of third-party rights advisers since I believe this is not currently under consideration. Rather, I'll focus on why I believe it's inadvisable to include legislative provisions mandating rights advice on the part of health providers. I'll also not read into the record the recommended statement, "Notice of rights in other places under subsection 9(3) of the Consent to Treatment Act," because I believe others have done so and I suspect that most of you are probably convinced by now that language like that, which, to be fair, was recommended but not required language, is inappropriate in the context of a caring relationship between health provider and patient.
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However, you're probably wondering whether there should not be some legislative provision about rights advice, perhaps leaving the exact language to the discretion of health providers. I argue that there should not be rights advice provisions in legislation and offer the following reasons:
Rights advice provisions are very likely to be ineffective. The rights advice provisions of the Consent to Treatment Act have been largely ignored. There's no reason to believe that rights advice provisions in the Health Care Consent Act would be followed. The options for government then, as a practical matter, will be either to mount a massive and expensive enforcement campaign with regard to rights advice or to permit rights advice to be devalued by non-enforcement of explicit legislative provisions.
Alternatives to legislation, such as dissemination of an instrument like the aid to capacity evaluation, provider education regarding capacity and policymaking by health facilities and professional regulatory bodies, are, I believe, likely to be effective at protecting the important rights at stake.
In contrast to issues like disclosure, there is very little experience or common law on just exactly what the conversation between a health provider and patient should look like just after the health provider has assessed the patient and found her to be incapable with respect to consent to treatment. There are no accepted standards for rights advice. It is premature, I believe, to legislate something so unclear and so untested.
If the legislative rights advice provisions are specific, they will create the same problems encountered with the recommended statement in the Consent to Treatment Act. That is, they will either be ignored or followed in a legalistic and bureaucratic manner that erodes the caring relationship between provider and patient.
On the other hand, if the legislative provisions regarding rights advice are left vague, they will unfairly expose providers to liability for not following some oblique and unspecified legislative duty.
After the justifiably negative reception of the Consent to Treatment Act, providers will be hostile towards legislated rights advice. The message regarding the importance of rights advice should come from opinion leaders within the health care professions and from the professional colleges, because that's the way the message I think is most likely to change provider behaviour, which is the goal.
Sometimes rights advice may even be harmful by rubbing people's noses in the fact of their incapacity. Legislation does not provide sufficient flexibility for cases such as this.
Ontario is the only jurisdiction in the world I've been able to identify that has provisions in effect for rights advice in the non-psychiatric setting. Not including rights advice provisions in the Health Care Consent Act would bring Ontario law into conformity with the law in the rest of the world.
Philosophically, legislated rights advice is an inappropriate, I believe, intrusion of government into a private sphere relationship between health provider and patient. I don't think the government should be in the business of mandating the speech of private citizens.
There is another situation in both the consent act and the Health Care Consent Act where the government does in fact mandate speech, and that's a useful counterpoint. That's the issue of the standards of disclosure, but there's 20 or 30 years of experience on standards of disclosure, what they should be, much common law, including the Supreme Court of Canada case in Reibl and Hughes. I think that in a situation like that, government-mandated speech may be appropriate, but in a situation like rights advice where the standards are completely unclear, I believe at this time it's an inappropriate intrusion.
In summary, protecting the rights of citizens to make their own health care decisions is extremely important. I believe this goal is best served by not legislating rights advice. If there's one lesson from the untoward experiences with the Consent to Treatment Act, this is it.
If I might just say, the Consent to Treatment Act and Health Care Consent Act both contain excellent provisions for guiding clinical practice. You've heard my preference for the Health Care Consent Act, but 90% of what's in both of them is very helpful in terms of educating providers and in terms of providing a foundation on which to build. I believe that the negative reaction on the part of providers to the Consent to Treatment Act was narrowly related to that 5% or so that dealt with provisions related to rights advice, and I think one ought to be very careful before reintroducing legislative provisions related to rights advice. The right itself is extremely important to protect. Rights advice itself is important. The appropriate vehicle, however, for rights advice and for protecting these rights is not legislated rights advice reintroduced into the Health Care Consent Act.
Thank you. I look forward to your questions.
Mrs Caplan: Thank you very much, Dr Singer. I'm an admirer of your work, and I would like to discuss with you some options that might be acceptable.
Personally, I believe there must be an obligation to communicate. I don't think the law should be prescriptive as to what the communication should be. In fact, I would be perfectly happy if the colleges were able to establish those guidelines. However, under this legislation we've heard that social workers and others who are not regulated professionals can be empowered evaluators by regulation.
Therefore, I would be content -- and I'd like your opinion on this idea -- if this legislation said that there's an obligation to communicate, and I wouldn't use the words "finding of incapacity." What I would say is that where an evaluator determines that an individual is unable to understand or appreciate the consequences of a proposed treatment, and where there is a college, it will establish the guidelines for how that can be done appropriately, and where there is not, then by regulation -- and hopefully they would decide to prescribe the use of this as the tool, so that you would have a communication that was consistent. I think this is an excellent tool. This ACE is what I'm referring to.
Something as simple as that I think might solve the concerns of those who have come before the committee to say, "You can't remove all of the obligation to tell someone when they have been found incapable at the same time as you are removing all liability of the provider who provides the treatment, and you're also removing all liability of the substitute who is called in." Certainly as an ethicist you have to have some concerns about no liability and no need to inform.
Dr Singer: I think you've really provided the sharp and difficult and narrow question, which is not related to third-party rights advisers. It's not related to recommended statements. It's related to legislative provisions which just saw off very soon, in terms of providing some duty to communicate.
I've thought about this a lot. If this were 1993, I would probably say, "That sounds like a great idea; it should be included in legislation," because in theory it's not such a bad idea. However, given the practical history of what's happened with the Consent to Treatment Act, my advice would be not to include legislative provisions no matter how watered down because of the various arguments that I've given in terms of bullet points.
Having said that, communication is extremely important, and I spend much of my professional career trying to establish ways to communicate around advance care planning, advance directives, living wills, powers of attorney for personal care. But increasingly I believe that on the one hand such communication can't be stimulated by legislation -- and we actually have examples in the advance care planning area in the patients' self-determination act in the United States, which really hasn't stimulated communication -- and on the other hand, legislative attempts to do so may be counterproductive.
So whereas I completely agree with the goal of communication, I think legislation is ineffective and possibly counterproductive in getting to that goal, and some of the other strategies in professional education, in some of the research transfer activities and some of the policy activities that I've suggested would be more effective in reaching that goal, which we both share.
Mrs Caplan: Well, then, how do you feel about the notion of absolute liability for proceeding with a treatment in the absence of the communication?
Dr Singer: I'm not a lawyer, so this is a layperson's view on liability issues, but I think there are a lot of requirements that are totally justifiable related to disclosure, for instance, which is itself an act of communication in the consent act, and I would be extremely uncomfortable if the disclosure requirements were not in a consent act. So I think communication is important. There are a number of legislative provisions in the Health Care Consent Act that stimulate communication.
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The one narrow piece of communication that's not currently in the Health Care Consent Act is, what do I say as a provider after I've found someone incapable? Should I have a legislated duty to say something like: "I've found you incapable. You have the right to appeal"? After much reflection, my answer to that question for the reasons I outlined is that I think it's inadvisable to have a legislated duty. I think in most cases I should do that; in most cases I do do that. In terms of stimulating my colleagues to do it, I think the most effective way to do that would not be to reintroduce legislative provisions related to rights advice into the Health Care Consent Act but rather to follow these alternatives.
Moreover, as a liability issue, if it is sort of a watered-down rights advice provision without specifying how that will occur, I'd like to hear some legal advice about holding physicians to a standard of liability with regard to consent for this oblique duty which has not been characterized. On the other side, I don't think that would be a fair liability situation for physicians or other health providers.
Mrs Boyd: Thank you, first of all, for your presentation. It was very helpful and I must say that this ACE evaluation scheme and the way in which you've set it up is very, very helpful in terms of helping people to know how this evaluation would be done.
I'm very surprised to hear someone with your reputation, and I agree with Mrs Caplan that certainly it's a very fine reputation in terms of bioethics, come forward with the strength of this advice that you have given. It's not unusual for us to hear it; we hear it from health care providers all the time. It's the consumers who don't seem to be balanced in this whole issue.
If health care providers had been providing advice and information to patients all along, there would never have been any need for this legislation in the first place. This arose because of the many horror stories and the fact that people were being treated without their consent, without their knowledge, without full disclosure. That's why we are here today, and one of the reasons we are here is hearing again and again from consumer groups that this didn't end in 1993 at all.
The resistance that the medical profession showed to any effort on the part of any government to call them to be accountable for this sort of thing is the very reason that you're suggesting we shouldn't legislate? In other words, if people behave badly and refuse to obey legislation, they get rewarded by having that requirement withdrawn? I'm amazed. It doesn't sound like you at all, if I may say so. I think you're right. I think you would provide that information and that advice. The problem is many of your colleagues don't.
It really worries me that you are presenting this committee with "You can't do any of these things and you have to trust the very people who, although this has been brought to their attention again and again, as colleges, as education facilities, as professional associations," and we're supposed to just leave it up to them to do what they have never done and what we hear terrific resistance to doing? I think that would be very irresponsible of us as people who have a fiduciary responsibility to protect the vulnerable in society.
Dr Singer: We come at many of the issues the same way, but some of the issues differently. I am not suggesting that consent ought not to be legislated -- standards of disclosure, standards of capacity. It's a very narrow thing related to rights advice. I'm also not suggesting that the right itself -- and narrowly it's a capable person being declared incapable unjustifiably -- I'm not saying that's a good thing; that's a terrible thing, and I characterized it as an abuse of human rights. I'm also not suggesting that rights advice is not important. I think rights advice is important.
Reasonable people will disagree about this narrow question and I don't think taking one side or the other would call anyone's reputation into question on this narrow point. The only question I'm asking is whether the goal of protecting rights, and in particular rights advice, and making sure capable people are not declared incapable unjustifiably, is best served by having a provision in the Health Care Consent Act mandating rights advice.
The answer to that question is no. Fundamentally, part of the problem, and it's a very narrow thing --
Mrs Boyd: But if it isn't and you're saved from liability and there's no more Advocacy Commission, what recourse does the person have? None. There is absolutely no recourse under those circumstances. You're safe, not liable, there's no Advocacy Commission, there's no protection for the individual.
Dr Singer: Again, I'm not a lawyer, but I would think that a couple of places that person would have recourse would be to the Consent and Capacity Board, would be to the courts. Those structures are still there, so the forums for recourse are there.
Mrs Boyd: They don't know about it.
Mr Marchese: How would they get there? If people don't know about their rights, how do they get to the consent board?
Dr Singer: I think to assume that just because you don't have a legislative provision about rights advice means that people won't know about their rights is an awfully big jump. I'm suggesting several alternative avenues towards protecting the right in general and towards fostering rights advice in particular. Let me make it clear again. Consent is important. These rights are extremely important. I devote my professional life to trying to protect them. Capacity is extremely important, and to declare someone incapable unjustifiably is a fundamental deprivation of their human rights. Appeal mechanisms should be available. Rights advice is important.
My narrow question is: Does it best serve the goal of protecting these rights to prevent incapable people from being declared incapable unjustifiably, fostering rights advice and promoting these important rights that we hold dear, is that best served by legislative provisions or alternative mechanisms to pursue the rights advice? My conclusion is, it's best served by not having legislative provisions.
Mrs Johns: I'd like to thank you for your presentation. It gives us a lot of food for thought. I believe, as you have said, that the issue we are really trying to solve here is the capable person who has been deemed to be incapable. I think we all agreed that that's the process.
What I worry about is that part of the failure, if you will, or the area that is least proven to be successful in this is the probably incapable and probably capable. Those are the two areas that we're most concerned about, and this report isn't doing the best job in those areas. Talk to me a little bit about that, if you can, and how we could try to eliminate that.
The other thing I'm concerned about that I want to talk about is, it may be well for the people who are going through your course right now, Dr Singer, and they understand what's going on. What happens with the old doc who's out there? How do we train him to be able to make sure he's doing this the way we would like to have it happen?
Dr Etchells: I'll address your first part, and Peter will address the second part.
You're absolutely right. I think that the issue is how do we guide clinicians to the right course of action in the uncertain middle cases, and the question -- and I don't know the answer to the question -- is whether rights advice would help guide them to the correct action and whether without rights advice the incorrect action would be taken. I can't answer that question.
I think that the process of doing ACE and coming to the conclusion that you're not sure is extremely valuable and actually helps clinicians recognize what the correct action is. In some cases the correct action is that they're not sure if the person's depression is affecting their decision. In that case the correct action is to have a psychiatrist come and evaluate, because psychiatrists have expertise in that setting.
It might be that the patient has a culture that is different from the physician's culture. In that setting the correct action is to find out more about the person's culture. It might be an issue of religion. In that case the correct action is to find out more about the person's religion. It might be the person's experience with illness, in which case the right course of action is further counselling and discussion before any action is taken about treatment. I think that even though you don't know what the correct answer is about capacity, the process of doing it helps lead you to the correct action. That doesn't answer the question about rights, though.
Dr Singer: And on the education point, about a third of the people in Ed's study fell into that category. The screening assessments at the extremes are accurate. In the middle the screening assessments are not sufficiently accurate, and more in-depth assessments by people who have more expertise and might spend more time than the front-line health provider doing it are called for in that middle group.
With regard to the question of education, I think that aggressive efforts do need to be mounted related to consent and capacity and rights advice, and all these issues. I'd fully support and participate in these sorts of activities; in fact it sort of underlines my main point. There's a number of different tools available to achieve the goals we want to achieve and I would go so far as to say that high-quality educational programs around this issue aggressively pursued are more likely in my estimation to achieve the important human rights protection goals than rights advice provisions in legislation.
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Mr Klees: Would you say that the position you put forward is fairly representative of your profession, or is this a fairly personal view?
Dr Singer: That's a good question, because on the very narrow point, the way Mrs Caplan framed it, I don't know exactly what the spectrum of views is in the profession.
Mr Klees: If it is a widely held view, I have very serious concerns, and I'll tell you why. To see the kind of comments here that if provisions were enacted in legislation they would be ignored, that they have been largely ignored -- we're being asked by you to leave this kind of rights advice requirement to your profession. If the profession's attitude is that if it's legislated, they'll ignore it, that's not a very responsible way of coming here and giving us advice about how to deal with this issue.
Dr Singer: Yes, and so I should be very clear. I'm not saying don't do it because it won't be followed. I'm saying if you do it, I predict it won't be followed, which doesn't justify not doing it --
Mr Klees: It's not a good comment here.
Dr Singer: Let me just finish, Mr Klees -- and therefore, thinking a step or two ahead, if I'm right, you'll be in the situation where you have to do one of two things: either invest in an aggressive enforcement campaign for the rights advice narrowly, or just let it go on and be disregarded, in which case you devalue it.
I'm not arguing that the fact that it's not followed is the justification for not doing it, and Mrs Boyd made this point as well. I'm just encouraging you to think strategically. Moreover, one ought to ask why it's not followed. I think that the reason, for instance, the rights advice provisions in the consent act -- my impression is that they were variably followed, let's put it like that, because most people thought, providers as well as patients and families, and this is extremely important, that that sort of language just had no role in a caring relationship, and I think most of you probably agree with that.
Now I might know and you might know that that was recommended language, but I think the average provider on the street thought, "Here's the Consent to Treatment Act, here's this piece of legislation, here's this rights advice provision, here's this recommended form. I don't have the expertise to make up my own form. I'm going to use the recommended form," tried it out a couple of times, and families -- for instance, one case I know of they laughed in the middle of this thing.
No one is arguing to reintroduce that language, but that's the way things play out in real life. I just really want to underline that you have to consider why providers didn't follow it, and it's certainly not because they're not fundamentally devoted to protecting these important human rights.
The Chair: Thank you, Mr Klees. Dr Singer, Dr Etchells, thank you very much for your submission today.
ALZHEIMER ASSOCIATION OF ONTARIO
The Chair: Our next submission will be the Alzheimer Association of Ontario. Welcome.
Ms Shelley MacEachern: Good day. My name is Shelley MacEachern and I'm president of the Alzheimer Association of Ontario.
Mr John Ellis: I'm John Ellis. I'm the executive director of the association.
Ms Susan Kitchener: I'm Susan Kitchener and I'm manager of public policy.
Ms MacEachern: Before I begin, I have to tell you I've flown down from Sault Ste Marie to be here today and address you, and I'm awed by this whole procedure. I've never been in the Legislative Building before and I'm quite impressed. It's really a pleasure to be here today and the responsibility that this group has to ensure that it meets the needs of the citizens of Ontario is a little overwhelming. Certainly we're very happy to be here today to offer our bit of advice to you as we see it.
We wish to thank the committee for this opportunity to comment on Bill 19. Our purpose here is to seek a balance between an individual's right to choose and the practical ability to put care and property decisions into action in a time frame which serves the individual well. We will make some recommendations to forward this purpose and will focus on the people we serve -- people with Alzheimer disease and related dementias and their family caregivers.
The Alzheimer Association of Ontario is a non-profit, charitable organization of chapters in 38 municipalities throughout Ontario. Together, Alzheimer chapters have a membership in excess of 6,000 people, most of whom have been directly affected by Alzheimer disease. People who have been diagnosed as having the disease themselves are people who have or have had family members with the disease. Where individuals with Alzheimer disease or related dementias or their family caregivers ask for help, virtually all chapters assist with the advocacy for needed support and services.
The association and its chapters have an operating budget of approximately $8.5 million, with about 27% of that amount currently coming from the government of Ontario for delivery of day programs, respite programs and counselling services. As well, chapters operate family support groups, education programs and information services for individuals, families, health care professionals and the general public.
The association is committed to providing major financial support to Alzheimer research at the University of Toronto's Centre for Research in Neurodegenerative Diseases. In addition, substantial ongoing financial support is provided to the studies of psychosocial aspects of care for people with Alzheimer disease.
Given the nature of Alzheimer disease, the existing and proposed legislation are of pivotal importance to people with the disease, their family members and friends. Getting the legislation right is critical to all of us if we are to cope with the fiscal and societal implications of Alzheimer disease and related dementias, given the projected number of Ontarians who will be directly affected by this disease.
Alzheimer disease causes a progressive and irreversible loss of mental function. It has no known cause or cure. The loss of mental function includes: progressive and irreversible loss of decision-making capabilities; progressive and irreversible loss of ability to give directions for care; progressive and irreversible memory loss; the same kind of loss of the ability to carry out functions of daily living, such as bathing, toileting, dressing, cooking, eating; loss of concentration skills, thought disorder; loss of abstract thinking skills; loss of language skills with eventual inability to communicate; loss of orientation skills, both of time and of location; loss of visual and spatial skills; progressive and irreversible loss of ability to recognize family, friends and ultimately oneself.
The progressive loss of mental function can result in a progressive loss of physical control, including: incontinence, falls, inability to walk, inability to swallow and eventual inability to function physically.
A diagnosis of Alzheimer disease marks a life of two to 15 years of steadily increased dependency requiring care, usually by a partner, followed most often by institutionalization.
Let me give you some idea about the current and projected extent of Alzheimer disease and related dementias. Health and Welfare Canada's 1994 Canadian Study of Health and Aging puts the prevalence of dementia in Ontario of people 65 years of age and older at over 90,000 individuals. It is generally accepted that Alzheimer disease represents 75% to 85% of the dementia in the elderly.
By the year 2000, the study projects that the prevalence of dementia in Canada will have increased by more than 50%. You'll notice in your brief that there's an error here, if you could make that correction.
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In Ontario, by 2011, when the first of the baby boom generation are turning 65, the prevalence of dementia will have increased by more than 90%. By 2021, the projection is 150% increase in the prevalence in Ontario. Increasingly, the largest group of Ontario citizens, the baby boomers, are directly affected by dementia, firstly as family caregivers for parents with dementia and secondly, as diagnostic methodology improves, Alzheimer disease is being diagnosed at earlier and earlier ages. Early-onset Alzheimer disease is just beginning to show in the baby boom generation, their spouses, partners and siblings.
For each person with dementia, it is estimated that a minimum of 10 other Ontarians are affected in trying to provide care. Spouses, partners, children, siblings and, increasingly, grandchildren and extended family members and, of course, family, friends, neighbours and community support groups.
Mr Ellis: Just a few words about the existing legislation, the three acts. The association originally endorsed the intent of the existing legislation to protect the rights of vulnerable people with no supportive families or support networks. Particularly we applauded the introduction of provisions which enable people, while still capable, to set out binding decisions regarding care of their property and persons should they become incapable. We commended the codification of the common law in the requirements for consent to treatment and the introduction of the hierarchy of substitute decision-makers.
However, in deputations in 1991 and 1992 the association expressed very serious misgivings about the three acts which were then proposed. Our position at the time was steered by the structural rigidity of the rights advice process as set out in the acts. We saw the confrontation innate to the system and the bureaucracy necessitated by them as exceedingly problematic. We warned that the treatment and procedural holdups which were inherent in the rights advice process as enacted would put some people with Alzheimer disease and other dementias at risk. In fact, the day-to-day application of the legislation proved to be fraught with ever-increasing problems of complexity, cost, confusion, desperation and delay.
With regard to Bill 19, our association congratulates the drafters of the bill for listening to our growing apprehensions as the existing legislation was put into daily application. They've addressed virtually all of our major difficulties with it. The clarifications and simplified processes are indeed welcome.
We see the bill as making helpful improvements and there are a lot of them. You'll find some listed on pages 7 and 8 of our brief. So let me just outline a few for you: elimination of the day-to-day difficulties that the Advocacy Act created; removal in the Substitute Decisions Act of the onerous validation process for powers of attorney and the elimination of the requirement to file yearly plans; broadening the categories of family caregivers who can become statutory guardian; clarification of the role of the public guardian and trustee as substitute only for those who have no one else to make decisions; in the Health Care Consent Act, the maintenance of the right to appeal a finding of incapacity to the consent and capacity board.
We find particularly helpful the provisions regarding consent from family members to admissions of an incapable person to a nursing home or other care facility. The admissions process, as you will know, had become a difficulty. We like some of the concepts introduced in personal assistance services, personal assistance plans and practitioner access for consent to the hierarchy of substitutes.
We support the checks and balances offered by the provisions which allow health practitioner appeal to the consent and capacity board when they believe that a substitute decision-maker has not followed the rules of substitute consent.
On balance we support the proposed legislation. We do see some issues raised particular to the people we serve, however, we will offer both comment and recommendations.
Ms Kitchener: Our purpose in making the recommendations which follow is twofold: firstly, to ensure that respect for the rights and the personal dignity of all people with Alzheimer disease and related dementias is upheld, and secondly, to ensure that as a society we keep faith with those who have made capable choices known in advance of incapacity.
We believe that most families of people with Alzheimer disease and related dementias are caring, concerned and respectful. That the changes introduced in Bill 19 take this as a starting point is a major improvement in the legislation, but where people have no supportive families or support networks, legislative provisions to protect their rights and to prevent physical, financial and mental abuse are critical.
A majority of health practitioners provide professional, suitable care, but legislation must require health care providers to seek out and abide by both the capable wishes and the decisions of responsible substitutes. We will ask for some strengthening of the legislation of this and the Health Care Consent Act.
Rights advice is the general heading for our first group of recommendations and the first of these is rights advice for findings of incapacity. The issue is this: The proposed Health Care Consent Act maintains the right of an individual to challenge a finding of incapacity to the Consent and Capacity Board. However, there is no mechanism in the act for informing individuals that they have been evaluated as incapable. The act is also silent on how a person would come to know of this finding and what the implications of the finding are, or that she or he has the option to appeal the finding.
The second issue: The Substitute Decisions Act allows the holder of a power of attorney for personal care to begin exercising that power once he believes the grantor to be incapable. It does not ask that the attorney let the grantor know that he will begin to make decisions on the grantor's behalf.
We support the principle that individuals who are about to lose their right to make personal decisions because of a finding of incapacity have the right to be advised that they are being considered incapable, that someone else will be turned to for decisions and that they have the option of appeal. For this reason we make these recommendations:
That the legislation provide that persons who are about to lose the right to decision-making be informed that this is the case, the implications of such a finding and of the right to appeal the finding and proposed outcomes.
That the legislation affirm the right of persons to receive this information whether or not it's believed that they're capable of comprehending it.
That the legislation provide that the capacity assessor, evaluator or health practitioner who makes a determination of incapacity inform the person that a substitute decider will be asked to make decisions on the person's behalf. We can talk later about how the legislation might provide that, whether it's in regulations or the legislation itself.
That the legislation provide that if a person assessed as incapable indicates an unwillingness to have substitute decisions made on his or her behalf, the capacity assessor, evaluator or health practitioner advise the person of the right to appeal.
Lastly, that when the holder of a power of attorney for personal care is going to exercise that power because he or she now believes the grantor to be incapable, the legislation ask that the attorney let the grantor know that he's going to start making substitute decisions and why.
With regard to rights advice for admission to long-term-care facilities, the proposed legislation provides for a determination by an evaluator of the person's capacity to give or refuse informed consent to admission. Once an evaluation of incapacity is made, the person may be admitted to a care facility without his or her consent and without being told of the results of the evaluation, its implications or the right to appeal. The act maintains the right of the person to challenge a finding of incapacity but, as we noted earlier, makes no provision for informing the person.
If the recommendations which we've just made were implemented, it would provide for this kind of notice.
Mr Ellis: The next set of recommendations concerns the Substitute Decisions Act. Our first comments are in regard to capacity assessments.
Pivotal to the workability of any substitute decisions scheme is the efficacy of the capacity assessment process. Regulations to the current Substitute Decisions Act require the capacity assessment office, now in the office of the PGT, to train, authorize and maintain a roster of the variety of qualified legal and health professionals needed to provide assessments of capacity regarding property, treatment and personal care.
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The Health Care Consent Act introduces the evaluator who may evaluate a person's capacity to consent to admission to long-term-care facilities. While evaluators must be members of professional colleges or associations, provision is made for the addition, by regulation, of further categories.
The issues are these, in our opinion:
(1) Protecting the rights and determining the remaining ability of persons with Alzheimer disease to make decisions on their own behalf is clearly dependent on the training, judgement and experience of capacity assessors. Our concern is that changes in regulations not compromise these criteria.
We recommend that in considering regulatory changes regarding capacity assessment, the government seek comment from the Alzheimer Association of Ontario whose constituency is so directly affected by the means of determining of capacity.
(2) Regulatory additions to the categories of evaluators and assessors and/or changes to capacity assessment processes and standards may introduce the need for Alzheimer-specific training.
Our recommendation: Given its practical expertise in the development of Alzheimer-specific training curricula, that the government seek comment on training requirements for capacity evaluators and assessors from the Alzheimer Association.
Still under the general heading of the Substitute Decisions Act, we have some concerns about the potential for conflict of interest and misuse. The association's mission statement commits it to promoting the rights and wellbeing of individuals with Alzheimer disease. In our view, two provisions in the amendments to the Substitute Decisions Act open the potential for conflict of interest in the care of people with Alzheimer's and related dementias.
We believe there is potential for conflict of interest and misuse when children of the grantor are eligible to be witnesses to the power of attorney, as the amendments to the SDA allow. As well, Bill 19 makes amendments to the Substitute Decisions Act which would allow courts to appoint service providers as both guardian of property and guardian of the person when there is no one else suitable or willing to be appointed. The prospect of, for example, the administrator of a long-term-care facility receiving compensations for services and making decisions about which services, including treatment, an incapable person receives seems to open the potential for conflict of interest or misuse.
We recommend that children of the grantor of a power of attorney for property or of a power of attorney for personal care not be eligible to be the witness to the power of attorney, and second, that the legislation provide that appointments of service providers be limited to either the guardian of property or guardian of the person where the court finds no suitable person who is willing to be appointed, and that the public guardian and trustee be appointed as the other.
A third concern under the Substitute Decisions Act is privacy. We recognize that the provisions for regulations in section 60 of the Health Care Consent Act allow rather than require health practitioners to release personal information about patients and residents. However, such personal and private information about people with Alzheimer's and other dementias is particularly sensitive. The potential harm for family members lies in, for example, theories of hereditary causes of the disease.
Although the Attorney General has made a commitment to consult the Information and Privacy Commissioner before promulgation of regulations which might compromise privacy, disclosure by persons not covered by the Freedom of Information and Protection of Privacy Act remains a concern. Particularly problematic are section 60, clauses c.2, c.3 and e.4.
We believe it would be useful to spell out in regulation guidelines which practitioners may use when judging whether information should be released and the parameters of such information, and we recommend that in considering the introduction of regulations which might compromise the privacy of people with Alzheimer disease and related dementias, the government seek comment from the Alzheimer Association of Ontario.
Ms MacEachern: On balance, the association finds helpful improvements which we have noted earlier proposed by the new Health Care Consent Act. We have made some recommendations in earlier parts of this brief which have to do with the act. We would now like to turn your attention to personal assistance plans and activities of daily living, an area of particular interest.
We believe that it is appropriate to formally recognize daily routines as an important component of the health and wellbeing of an individual, and important to acknowledge that many otherwise incapable people are capable of expressing wishes about their daily routines even if they are not necessarily capable of consenting to an entire treatment and care plan. We do not believe that the way this is presented in Bill 19 entirely meets this objective.
We endorse the intent to clarify the activities of daily living as separate and distinct from treatment. As well, we support the concept as set out in part IV of the Health Care Consent Act to provide practitioner access to the hierarchy of substitutes bound by the requirements of substitute consent when a person is incapable to consent to personal assistance services. However, we do wish to make some comment.
The Health Care Consent Act introduces terminology to describe what is well understood in practice by individuals, caregivers, practitioners and legislators as activities of daily living or ADLs. We believe that the use of the common parlance would assist everyone in understanding these new provisions. Additionally, the definition of activities of daily living as described in the regulations to the existing legislation have been found to work well in practice and would appear to us to be usefully repeated in the new legislation.
Recommendations:
(1) That the legislation speak of "assistance with the activities of daily living" rather than of "personal assistance services."
(2) That the definition of activities of daily living be, as in the current regulations, "an activity that a person performs routinely and may include such activities as hygiene, dressing, ambulation, washing, grooming, elimination and positioning or other activities of daily living."
Consent for assistance with the activities of daily living: Very few people will be incapable of expressing consent or refusal to assistance with such basic activities of daily living as washing or toileting. Most people will be capable of making their wishes known. These wishes should be respected. In practical terms, when individuals refuse proposed assistance with ADL at a particular time, providers may approach them later when they are more amenable. We believe consent must first be sought from the person to whom the action is proposed.
Issue: People in the mid to late stages of Alzheimer disease are incapable with regard to consent for treatment. In these cases, consent may be obtained from the hierarchy of substitutes. Many people in the later stages of Alzheimer disease may very well be incapable with regard to consent to assistance with the activities of daily living. Should provision for consent for ADL not likewise be provided from the hierarchy of substitutes, who would be bound by the legislation, rather than leaving ADL decisions up to professional caregivers?
As indicated, we applaud the concept of practitioner access to substitutes bound by the act for decisions about assistance with the activities of daily living in cases where the persons themselves are incapable in that respect. We urge amendment to provide for this in all settings, not just in care facilities.
Recommendations:
(1) That the legislation make provision in accordance with common law that where a person is capable with regard to consent to assistance with activities of daily living, the care provider gain that consent before proceeding with assistance with an ADL.
(2) That where a person is incapable with regard to consent to assistance with an activity of daily living, and in the absence of a care plan provision, the legislation ask that the care provider seek consent from a substitute listed in the hierarchy of substitute decision-makers listed in the Health Care Consent Act who would be bound by this act.
A care plan may not cover all exigencies for assistance with activities of daily living. As well, there will be situations where consent from a substitute cannot be gained quickly. In such situations, and where assistance with an activity of daily living is taking place on a repeated basis, we urge a requirement that the substitute be informed. The substitute may then wish to consent to revisions to the care plan.
Recommendation: That the legislation require that, where a person is found to be incapable with respect to assistance with an activity of daily living, assistance may be given without consent if the caregiver has made reasonable efforts in the circumstances but has been unable to obtain a substitute consent or refusal for assistance with the ADL and that this be reported to the substitute if it is occurring on a repeated basis.
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Mr Ellis: Let's stop now and see whether there are questions. Members have the document in front of them.
Mrs Boyd: Thank you very much for your very cogent recommendations. I see that you would have gone on in section 9 to urge the government to "develop an alternative, cost-effective program of advocacy supports which utilizes the existing resources of consumer organizations." I think that's very helpful, to know that you would support that, but you need to know that we certainly think there needs to be training and coordination and so on to ensure that's there.
Equally, on the rest of your recommendations, we will look at them and take them into consideration. We know that you've presented in the past when legislation was being considered and that you've always been people who have wanted to work with the government to ensure that the rights of Alzheimer patients are respected. I think you've done it again.
Mrs Johns: I think in this presentation you talked about people coming in and out of being capable to make decisions and how we need to consider that very carefully. I just want to draw your attention, first of all, to section 15 in the Health Care Consent Act, which may well solve that problem. From the standpoint of Alzheimer people not in the specific health facilities we've talked to and maybe that we need to bring this act to people outside of what is traditionally a health care facility, can you just talk about how you would envision that happening or why it would happen?
Ms MacEachern: I think that what we would like to see is for it to expand into the community setting too. More and more people with Alzheimer disease will be cared for in community settings, and we would like to see it expanded so that home care or VON or Red Cross, or whoever happens to be doing the service in the home, would also have consent for a care plan.
Mr Ramsay: I'd just like to thank you very much for your report. You've given us much here to go over. We will certainly consider your recommendations next week when we go clause by clause.
The Chair: Thank you for a very thoughtful report. We wish you a safe journey back to Sault Ste Marie.
ONTARIO FRIENDS OF SCHIZOPHRENICS
The Chair: The next submission will be by the Ontario Friends of Schizophrenics. Welcome indeed.
Ms Elsie Etchen: I'm Elsie Etchen. I'm the president of the Ontario Friends of Schizophrenics. I'll be pleased to answer questions about the changes we recommend in our brief.
Mr Bill Phillips: I'm Bill Phillips. I'm the second vice-president of the association. I'd also be happy to answer your questions if I may.
Ms Etchen: In our audience today is June Beeby, who has been our executive director for years. Some of you will remember her from our previous presentations.
First, we'd like to congratulate the government on its approach to this legislation. Perhaps unlike the Alzheimer association, we didn't make a list of what we liked, because we thought we would be here all afternoon just giving you a list of likes, we're so happy about what's been happening. So we haven't done that.
It's been more than three years since we first appeared before the standing committee on administration of justice with the advocacy, consent, and substitute decisions acts; as they were then known, Bills 74, 108, 109 and 110.
Mr Phillips: To give you a little background, OFOS appeared before the standing committee on administration of justice twice in 1992 on the bills, and in November 1992 again we met with the government on the flaws in them. We have been a member of the ad hoc coalition. Our consistent theme has been to seek a balance in protecting rights and meeting the needs of persons with schizophrenia.
We deplore the adversarial nature of the regime fostered by that legislation. We said the complexities in it would interfere with access to treatment. OFOS thinks you have done a good job in providing a balance between protecting rights and meeting needs.
As most of you know, OFOS is a family-based organization whose relatives have schizophrenia. Schizophrenia is a biological brain disease that affects thinking, perception, mood and behaviour. Its causes are unknown, but overwhelming scientific evidence points to faulty brain chemistry or structural abnormalities in the brain. Symptoms include hallucinations, delusions and lack of motivation. Unfortunately, many people with schizophrenia have no insight into their disease and do not recognize that they are ill and need treatment.
Schizophrenia has been described by a leading American authority as "the world's worst disease, AIDS not excepted." It strikes in adolescence or early adulthood and disables most persons for the remainder of their lives. Individuals with schizophrenia occupy more hospital beds than people with cancer, heart disease, diabetes and arthritis combined. It is the most costly of all diseases to society and government.
Schizophrenia is treated with antipsychotic medication, which in most cases reduces symptoms.
Families see early, continuing and expeditious access to treatment as absolutely essential. The bureaucratic and complex nature of the Consent to Treatment Act and the Advocacy Act have forced many health care practitioners to delay treatment. Some families find the anguish almost unbearable. Simply stated, in practice these laws do not work.
You are undoubtedly familiar with the statement that a health practitioner is required to read regarding his or her finding of incapacity and the subsequent steps of rights advice and an appeal, which result in further delays. The process under the Health Care Consent Act will reduce the hours of delay, the resulting suffering and bureaucratic requirements.
Ms Etchen: We thought we would not read our entire brief, since you have the opportunity to look it over. We'll just go through some of the highlights in it and you can ask us questions. We hope to leave 10 minutes at the end, as we were asked to do, for questions.
Bill 19, as you know, provides for rights advice in psychiatric facilities, which appears to restore somewhat the situation under the Mental Health Act as it existed prior to Bills 74, 109 and 110. We really don't see any need for a centralized bureaucracy to manage the provision of rights advice in psychiatric facilities, and we hope this won't be created under this new legislation. We see the rights advice that's necessary as being rather straightforward, essentially the right of appeal for an involuntary admission or a finding of incapacity.
Because of many of our unfortunate experiences with delays in treatment arising from the mandatory provision of rights advice, we are concerned about the regulation-making authority set out on page 53 of Bill 19 "regulating the timing of the treatment of a person in a psychiatric facility, if the person must be provided with information about his or her rights or if the person exercises, or indicates an intention to exercise, any of his or her rights." We think rights advice should be available in most psychiatric facilities maybe within about three or four hours. In some remote facilities you might need to extend this, but no longer than 12 hours at the very outside.
We do ask the Ministry of Health that we be consulted on the regulations before they are put in place. We don't want to see the barriers to access to treatment that have been in the past a problem for our families. We say that generally the one-size-fits-all approach to providing rights advice does not really work very well, and an imposed legislative model cannot make health care practitioners really want to provide the rights advice. We feel a legislated model not being very flexible.
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While we have the greatest respect for the work of the review board, we feel that an appeal to such a board is the end of the protection-of-rights process. So we would like to see a non-legislative model of rights advice which encourages practitioners to cooperate with families, to cooperate with the persons who are found incapable with respect to treatment. You've all seen the long statement that practitioners have to read. Families resent this when their relative has been found incapable, so we do hope that something as rigid as that is avoided.
In our brief, we take positions on what matters most to families: improving access to treatment and providing relief from suffering for persons with schizophrenia. Most of this is taken from the brief that we wrote and most of you have seen that, since we gave all the candidates in the last election a copy of Out of the Maze.
Since Bill 19 has had second reading, we would say to you that we know there are some limits on the kinds of things and the kinds of changes that you can introduce. In our brief we recommend a form of outpatient committal, which we expect is likely to be an amendment that perhaps goes beyond the authority of your committee right now.
But since most persons with schizophrenia lack insight into their disease, as Bill has said, there's need for improved access to treatment for some people. We're saying to the government, you've rethought part of the process in providing access to treatment; we now think it's perhaps time to rethink some of the other issues.
There's very considerable scientific evidence that speedy and early treatment of people with schizophrenia prevents their cases from becoming chronic, so we think that the changes in the Mental Health Act shouldn't rest with just what you have done at the present moment. Here are some other ways we think that you might improve Bill 19. As I said, we think that you've done a wonderful job, but here are some things that we think might help people with schizophrenia:
Section 22 of the Health Care Consent Act, which we outline on page 7 of our brief; the section itself is found on page 76 of the bill. I've already mentioned to Donna Bryce, your clerk, that we have unfortunately had a proof-reading error; I hope some words have been deleted so that this makes sense to you now. We apologize for the problem we may have created. We say that section 22 makes it possible for a substitute decider to consent to an incapable person's admission to a hospital or other health facility even if the incapable person objects. However, if the incapable person is 16 years of age or over and objects, a substitute decider may not consent to the incapable person's admission to a psychiatric facility.
We think that a person in a psychiatric facility should have all the procedural rights under the Mental Health Act that this act offers. But we don't see any reason for prohibiting a substitute decider from admitting an incapable person to a psychiatric facility as an informal patient over his or her objection.
Section 22 provides a higher level of procedural protection than if the person were admitted to a psychiatric facility on a form 1 under the Mental Health Act. Under a form 1, a person may be detained for 72 hours with no provision for a review. An incapable person admitted under section 22 as an informal patient has the right to apply to the review board for a review of the health practitioner's finding that they're incapable with respect to treatment. We think that using section 22 opens to door to consent to admission.
We feel that if we could have section 22 amended so that informal patients could be admitted under that section, we would have a much better way of getting persons into a psychiatric hospital than we have now, if it was less rigid than the system we have under the Mental Health Act, under form 1.
We'd like to deal with section 50 of the Substitute Decisions Act. This section provides for what are commonly called Ulysses contracts. The essence of these is that a capable person plans in advance and expresses his or her wishes about what will take place when he or she becomes incapable. The essence of our position is that we should let people decide such matters for themselves. Circumstances differ, people's needs differ, so we think the special power of attorney under section 50 of the Substitute Decisions Act should speak for itself when the person becomes incapable. Let substitute deciders, health practitioners or other persons interpret the power of attorney and decide whether or not they have authority under it.
This is not to say that amendments to section 50 are not a significant improvement over what we have now, because we agree entirely that this is so. However, families find the present law too restrictive, and to be useful, OFOS thinks families will also find the revised provisions too restrictive. In our brief, we state that the test of capacity to make a special power of attorney should be related to an understanding of the nature of the things that the grantor is giving power to his substitute to do when he becomes incapable, and we think it's critical that an assessor establish that a person understand that from the outset. Rather than they be capable of personal care, we think that the test of capacity should be that they understand the power of attorney that they're granting.
We still think the provisions for a special power of attorney should be flexible, that is, that some or none or all of the provisions or even other provisions than those that are in the present section 50 should be possible. We think that capable people should decide for themselves what rights they waive and what rights they retain and what directions they are going to give their attorney.
We think the special section that you have on revocation is absolutely essential, but we think that perhaps otherwise freedom of choice should prevail and people should be able to develop their own special powers of attorney. In this way, families will be able to work out with their relatives what they wish to happen in the even of incapacity. We think that flexibility is important, especially for persons with schizophrenia, whose capacity is episodic and who may lack insight into their disease when they are incapable.
We've included in our brief some comments on training and we hope some money will be made available to the Consent and Capacity Board to help with training and bringing people up to date on this new legislation. We commend the government for the amendments that it has made to date. We would be pleased to answer questions on our brief.
Mrs Johns: I grudgingly want to get into section 22, that you were talking about in the Health Care Consent Act. I think it's important to understand that there are two sides to your comment. It's important to understand that you deal with family members or friends who need help right away, and there's another side of the populace of Ontario who worry about someone committing them to a psychiatric facility against their will.
I know that it's hard to find the two sides in this act. I guess what's happening here is that in section 22 we suggest that if persons over 16 object to going into a psychiatric hospital, the only way we can put those persons in is if they have entered into a Ulysses contract or if they have a guardian established.
With people who have friends or family who are schizophrenic and they have entered into this Ulysses contract because they have days where they're capable, days where they're incapable and they go through the process -- we've had someone come in and present to us who goes through that process and says, "When I get sick, I will give you the rights through this Ulysses contract to be able to put me in an institution." What do you see is the harm in entering into a Ulysses contract with your loved one so that you are able to not have to use a substitute decision-maker and you would eliminate the problem that you're talking about in your report?
Ms Etchen: We think that the Ulysses contracts are the way that many families will eventually go, section 50 under the Substitute Decisions Act. We've made the list of changes that we've suggested to make it more flexible so that families can use it. Right now, there aren't very many because it's too complicated. So we think section 50 is the avenue of future planning that has to evolve.
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Under section 22, all we're saying to you is that we think that a family should, under section 22, be able to admit a person to a psychiatric facility just as an informal patient. You're not giving the authority to detain or restrain or anything like that. You're just saying to the family: "All right, if he objects, you have the authority to admit him as an informal patient." Under section 14 of the Mental Health Act, as you know, an informal patient cannot be restrained or detained. So the hurdle of getting the person into the hospital, getting them admitted over their objections -- all we're saying is just remove that barrier for us and let them go in as an informal patient. If they don't want to stay there, of course they can then release themselves.
Mrs Johns: But in section 22, we're saying the person is objecting, so why would they stay if we bring them in as an informal patient anyway?
Ms Etchen: Some will. From our experience, some will. Even though they object to being admitted to the hospital, once they are admitted, some of them will stay. That's our experience with people with schizophrenia. All we're saying is, let us admit them as an informal patient under section 22.
Mrs Johns: I'll think about that. I'll probably have questions for you after about that. To go on to the treatment comment, what we were trying to do was to allow people who were having different kinds of treatment that were very limited treatments in the normal course of day-to-day operations not to have to go through the whole range of consent issues that came through here.
Ms Etchen: Right.
Mrs Johns: I see in one of your recommendations that you're suggesting that we allow treatment to people outside of those definitions of treatment, the narrower range, to be able to fall under the Consent to Treatment Act. Is that what you're suggesting?
Ms Etchen: Yes. On the activities of daily living, the persons who are in the substitute hierarchy for consent to treatment could also give consent to the activities of daily living. We think that would be advantageous. The risks are greater in giving consent to treatment than they are in giving consent to activities of daily living, so we think that the hierarchy could apply without too much difficulty. That's the essence of our argument.
Mr Michael Brown: Thank you for an important brief. My experience over the last eight or nine years as a constituency politician with both your group and the issues that you raise here are troubling in some respects. I don't know of any other illness that affects people in the way that schizophrenia does, and the issues around consent and seeing that the medical needs of these people are looked after in an appropriate fashion, I think you clearly tell us, is more challenging in this disease probably than in any other. That might not be a fair statement, but I think it is.
Ms Etchen: We think it is, yes.
Mr Michael Brown: This doesn't specifically have to do with the brief, because I think it's pretty clear on the issues from the way you see it, but I know that there's a mental health review going on right now and I'm wondering, are you participating in a review of the Mental Health Act and the issues surrounding that, or are you even aware of any review going on?
Ms Etchen: No, and we're not really aware of any review of the Mental Health Act that's presently going. Mental health reform, we participate in that. We have members on the various work groups and we have, I think, two or three representatives on the Provincial Advisory Committee on Mental Health Reform. But on the Mental Health Act itself, we're not aware of any committee or group that's reviewing that.
Mr Michael Brown: I was assuming that out of the mental health reform, there would be changes to the act.
Ms Etchen: We hope very much so. What we're saying to the government is that these amendments to the Mental Health Act only go a very limited way. What we think needs to happen is that there be a general review, and the issue of outpatient committal that we raised, we think we need that. There's a tremendous gap in the way we can have access to treatment, and that's one way that would help a lot.
Mr Michael Brown: I think anyone who's in this business as a constituency politician would agree that there are some real issues out there that we have to address. Thank you very much for coming forward. Keep up the good work.
Mrs Boyd: Thank you very much for your comments. I share Mrs Johns's concerns around your recommendations on section 22. I understand entirely why that might possibly work in a few cases, but I'm not sure that you change a law because it just might possibly work in a few cases. The case that's made by survivors of the mental health system for abuse is quite compelling.
Ms Etchen: What we're asking for though, we think, is less restrictive than what is the process for admission now. You can't detain a person under section 22, as we're suggesting, if they become an informal patient. Right now, if we wish to have someone admitted to a psychiatric facility and they object, we usually have to go through form 1 or go to a justice of the peace under form 2. We think this is a less restrictive avenue and perhaps fits in with the philosophy of this bill quite well.
Mrs Boyd: I would disagree with you quite strenuously that it agrees with the philosophy of the bill. The bill very clearly is there, and I think the best thing about this bill is that it very clearly is stating that it's important to take into account the wishes of the person most involved. So it seems to me that in fact this would fly in the face of that desire to make sure that the rights and the wishes of the person were being honoured. If in fact they are not honoured, they can be not honoured when someone is eligible for a form 1 or a form 2. That provision is already there. So it seems to me that what this does is add another level of coercion that is quite antithetical to the main purposes of the bill.
Ms Etchen: There would not be coercion, because under the Mental Health Act, anyone who is an informal patient can leave at any time. Under section 14, a person who is an informal patient cannot be detained.
Mrs Boyd: Do you think that the psychiatric facilities would in any way be willing under those circumstances to do this kind of admission? There's a great deal of cost and clerical work with each admission. Why would they want to do that if the person could leave at any point?
Ms Etchen: Well, they admit informal patients right now. There are perhaps more informal patients than there are involuntary patients in psychiatric --
Mrs Boyd: But those are people who are agreeing to go in. We're talking about against the person's will.
Ms Etchen: We're talking about when they object to the admission, yes.
Mrs Boyd: And that's what your whole issue is here.
Ms Etchen: Yes.
Mrs Boyd: There are many, in fact a large number of psychiatric patients, who feel themselves getting more and more unable to deal effectively with the stresses of their lives who will go to hospital and will admit themselves because they believe that helps. Our problem is that when someone doesn't believe it helps, when someone is resisting that kind of assistance, you're suggesting that it ought to be possible to force them into an informal admission. It seems to me that's entirely counter to all of the law that has built up over many years in terms of the protection of psychiatric patients.
Ms Etchen: I think perhaps we're not making our position clear. All we're saying is that the hierarchy of substitute decision-makers could admit the person if they objected. But the person doesn't have to stay in the hospital. They can be admitted, but they don't have to stay, as an informal patient. There's no coercion, there's no suggestion that the person has to be anything other than an informal patient.
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Mrs Boyd: Moving on to the issue that you raise around this extended use of the Mental Health Act for outpatient committal, I don't think there are any of us who don't understand why that might at first blush look like a very attractive option. Certainly from the family's point of view, and we all are really aware of some of the difficulties, it may seem like an attractive option. It seems to me that it's a much bigger issue that can be dealt with. It's a very significant change to the Mental Health Act, and it seems to me it is in no way a consequent amendment to the Mental Health Act and should not be admitted under a consequent amendment under this act. There needs to be a great deal of research and study into what exactly it would mean before that would work.
Ms Etchen: Yes, I think we agree with you that it is a very substantial change and it's probably not possible for you to make this change. I think we acknowledge that. We want to bring to the attention of the government, though, that there's this enormous hole in the process of caring for people with schizophrenia.
The Chair: Ms Etchen, Mr Phillips, thank you very much for your presentation.
DON WEITZ
The Chair: Mr Don Weitz is next. Welcome.
Just initially, Mr Weitz, if I could assist you with a possible misunderstanding, because I did not know. On the front page, I should advise you that this committee is hearing anyone who requested to be heard, except for, at this point, three individuals or organizations. So I just thought you should be aware of that, because I was not at this stage. You may proceed.
Mr Don Weitz: Good afternoon. My name is Don Weitz. I take it you have a copy of my brief: What Advocacy? What Rights? What Justice? I will not be reading word for word, but I have some very strong words for this committee and for the Harris government in regard to advocacy and rights and justice.
I am a psychiatric survivor. I see some people have already left the room, so that's body language I carefully note. I would appreciate people's undivided attention for under 30 minutes. That would be nice because as a psychiatric survivor and an unpaid advocate for psychiatric survivors for 20 to 25 years, we rarely, if ever, have been heard or have been taken seriously inside or outside of an institution.
I wonder how many hundreds of thousands of other citizens in Ontario were denied their democratic right to be heard before this committee and the committee that heard Bill 26. I understand this is not being televised, so this is an example once more of the Harris government's denial of access to public information, particularly extremely controversial, extremely far-reaching legislation that will affect every citizen in this province.
Many years ago, I was shocked against my will, against my informed consent. For 15 months I was locked up in a psychiatric institution, one of the best-known ones in the United States, called the McLean Hospital, affiliated with Harvard Medical School and Mass General Hospital. Any of you who know about the medical psychiatric hierarchy in Boston will know that that institution is a leading experimental laboratory for the latest psychiatric treatment. In less than a month or probably a few days, I was diagnosed as schizophrenic.
The people you heard here before and the psychiatrists continually propagate the myth that there is such a disease of the brain called schizophrenia. I have carefully read and looked at literature on schizophrenia for many, many years and there is not one shred of credible scientific, genetic, biological, medical evidence to justify calling so-called schizophrenia a disease of the brain or anything else.
I was diagnosed schizophrenic simply because I refused to shut up about my anger and because of my dissident behaviour, which was quickly pathologized as mentally ill or schizophrenic. Thousands of people in Ontario today, as we speak, are also being unjustly, fraudulently labelled or diagnosed schizophrenic simply because their families or others can't or choose not to understand them, to understand their communications, which may be very poetic and metaphysical as well as troubling.
It is a complete fraud, this whole thing of psychiatric diagnosis, particularly with schizophrenia and, by the way, the label never leaves. I mean it's like glue, once you're labelled schizophrenic, you're always schizophrenic. It doesn't matter if you go on to become a chief executive officer or a politician in Ontario. Once doctors have the stigma labelled on your chart, it stays there. Forty-five years after I got out of McLean Hospital, I know damned well it's still on my chart. This follows me wherever I go. If anybody wants to look up my records or has access to them, they can get it, at least in the States.
I was tortured with insulin shock. Those of you who know what insulin is will know that it is extremely powerful and the only legitimate use is for the treatment of diabetes, thanks to Dr Frederick Banting, Best and others. By the way, Banting never spoke out against the use of insulin in psychiatry despite the fact that he was aware it was being used. It would have been nice for him to speak out, which would have saved maybe a few hundred lives here and in the United States.
I was lucky. I only went into a coma once. My doctor never warned me about a coma, never warned me about the tremors or convulsions or profuse sweating that always occur, just as doctors and psychiatrists today conspicuously and routinely fail to inform their patients about serious risks, including brain damage from electroshock, which is going on as we speak in Ontario, or aversive shock, which Sharon Danley referred to earlier today in her presentation for Survivors of Medical Abuse.
This is a disgrace. This is a massive human rights violation, a crime against humanity that electroshock, 130 to 150 volts plus to the brain, and that's true, which always causes an epileptic seizure and coma or unconsciousness, is still allowed as a legitimate medical treatment. It should have been outlawed, it should have been proposed, it should have been banned in the Consent to Treatment Act or rather in the Health Care Consent Act just as psychosurgery is banned for involuntary patients.
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If psychosurgery is so bad for involuntary patients and cannot legally be prescribed, why the hell isn't it banned for voluntary patients? Is there something different in the brains of people labelled voluntary that enables them to be immune to the brain mutilation which always occurs with psychosurgery? I don't know. Mike Harris talks about common sense. There doesn't seem to be much common sense in this government. There seems to be a lot of nonsense, a lot of insane nonsense when it comes to protecting people's lives and bodies.
During the last six years -- I won't get into my biographical stuff right now except to say that I have a radio program called Shrinkrap, the only anti-psychiatry program in Canada to my knowledge, which finally exposes some extremely serious psychiatric abuses and tries to help. I do whatever I can to help empower psychiatric survivors who have been put down, who have been seriously abused by the system.
I now get to rights advisers. Under your government's draft Health Care Consent Act, rights advisers are totally wiped out, so no one actually is going to find out what their rights are. Oh, that's terrific. Except if you're a psychiatric patient, then for some reason the rights advisers only let you know that you can appeal a judgement of incompetence or incapacity, a very damning, all-encompassing, stigmatizing term, I may add, because we are all capable and competent in some aspects.
Nevertheless if you're in Toronto General or St Mike's and you don't know whether you can say no to any treatment or operation and Aunt Betsy has a right to sign the form for you while you're about to go under electroshock, that's too bad. That's just too bad. You're up shit creek. That's it. Too bad. You get no free advice about your rights and about your right to speak out and save your body and mind or health. Too bad. That's what this government is saying to hundreds of thousands of citizens. It's unconscionable, it shouldn't be allowed. It should be criminal. It is criminal.
By the way, it seems that advisers can be nominated or chosen by the director of any medical institution so that anybody who works in that institution can be an adviser. That's conflict of interest. I guess some of you should know a lot about conflict of interest because you yourselves may have been charged or been accused of conflict of interest here in the Ontario government of before. It looks like you've enshrined conflict of interest for some rights advisers in the province of Ontario. Congratulations. How about independent rights advisers or is that too radical?
In the treatment section here in the Health Care Consent Act, it says under (g), "a treatment that in the circumstances poses little or no risk of harm to the person." That's not considered a treatment. Psychiatric drugs like the neuroleptics and anti-depressants, electroshock and/or aversive shock -- that's the use of the cattle-prod variety, which are known to be high-risk, health-threatening and behaviour modification procedures -- can easily be interpreted as having "little or no risk of harm" especially by the psychiatrists.
"Oh, we're just going to give you a little jolt in the brain, Aunt Betsy, and pretty soon your depression will be lifted and you'll have no memory loss." That's bullshit. There is always memory loss. It's not a question if there's damage as Dr Peter Breggin, the most world-renowned critic against electroshock and psychiatric drugs, is saying. The question is, does the patient recover? That's the question. Doctors cannot really give or very few give an honest answer in the medical psychiatric establishment in Canada. Does the patient recover?
Best interests -- oh, I should also add under treatment, most psychiatric patients, as you know and you will hear from other people coming before you today and it should be common knowledge by now, are not being fully informed about any psychiatric treatment, particularly the drugs. I wish I had a dollar, I'd be very rich, for every person who called me up at night or something: "Don, I wish I had known about tardive dyskinesia. Tell me about it." Tardive dyskinesia is one of the most serious, permanent neurological disorders resulting from any one of the 20 neuroleptic drugs approved by the drug formulary.
Do you think the doctors are going to inform you about that? Four years ago, the Clarke Institute finally decided to have a three-line explanatory note about tardive dyskinesia 20 years after the fact. Thanks a lot. In the meantime, a lot of my brothers and sisters were permanently brain-damaged by the miracle neuroleptic drugs. This happens to 30% to 40% of the people who are on any one of 20 neuroleptics four or five years or longer.
You won't get that information from the Clarke or Queen Street where they hand these brain-damaging drugs out like candy. Is there any protection here? Oh, yes. It says, "You're supposed to tell the patient about informed consent." It looks good on paper. "You're supposed to tell them about possible risks." Yes, you're supposed to, but let's get real. The reality is that no one is monitoring the doctors. No one is looking after them when they lie to your face and your family to warn you about the risks so you can make an informed decision.
Do the doctors tell you about safe community alternatives, non-medical alternatives like self-help or support groups? No. No, not on your life. Why? Because that would be threatening. It takes too much power away from them because they think they have all the answers, which obviously they don't.
Best interests. Oh, that's a nice-sounding term. What does it mean and who decides? Under the Health Care Consent Act, consider these subsections regarding factors. The substitute decision-maker, the person who's supposed to make these fateful health care decisions for you, must consider when deciding what the person's best interests are.
It's under subclauses 19(2)(c)(i), (ii) and (iii). Two of the very controversial points that the decision-maker has to take into account are: Does the treatment "(ii) prevent the incapable person's condition or wellbeing from deteriorating, or (iii) reduce the extent to which, or the rate at which, the incapable person's condition or wellbeing is likely to deteriorate"?
Well, I've got news. No one has a crystal ball to tell you, in psychiatry particularly, whether treatment's going to work or not. It's usually guesswork. And guess what? A layperson has a better chance of predicting so-called dangerous behaviour in a patient than the psychiatrist. It's like flipping coins in the courtroom. They can't predict.
There's a lot of documentation showing that psychiatrists cannot accurately and reliably predict behaviour, particularly dangerous or problematic behaviour, yet they are given the power to do so. This is a totally unrealistic bit of nonsense to assume that someone's going to say, "Well, it's likely to" or "It's not likely to." Hey, don't call it medicine. Call it a sideshow or quackery. It's quackery; it's not science that we're talking about here. You're enshrining quackery in your Health Care Consent Act.
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Aversive shock: Take a look at The 5th Estate's first-rate document called Short of Miracle aired I believe it was on January 2. Go ahead. If you think aversive shock is so good, go ahead and take a look at whatever his name is giving shocks to brain-injured kids in Chedoke McMaster Hospitals. This is not 1850; this is the 1990s. The kids, already brain-damaged, are being further damaged by shocks to different parts of their body. You know, the kids who wear a helmet and everything, and adults. This is allowed in compassionate, understanding Ontario. That's terrific, something to be proud of, that we're damaging brain-damaged kids. Take a look at the documentary from The 5th Estate, Short of Miracle; I mention it in my brief.
You think that's bad; of course, it's worse. The substitute decision-maker can decide whether their child can be subjected to this torture masquerading as treatment or rehab, at one of the government-funded institutions, a big, big-time institution, Chedoke McMaster in Hamilton. It should be banned. This doctor should have been charged with criminal assault and everybody that helped him. Electroshock -- I mentioned it -- still allowed. It's unfortunate. There are only about 1,700, 1,800 Ontarians, people of Ontario who are being shocked every year, 130 to 150 volts, going through epileptic seizures because they happen to be too grief-stricken or too depressed, and especially if they're an old woman. Do you know that 40% of the people who get shock in Ontario are 60 years and over? Where do I get that statistic? From your own Ministry of Health. Wake up. If you're an old person, especially if you're a woman, because twice as many women as men get shocked so there's a sexist angle here too, but there's an agist one too. This is a new form of elder abuse.
What are you doing about it? Nothing. Do you want a copy of my statistics? No, you go and ask the Minister of Health, Jim Wilson, who apparently turns a blind eye and so forth; I mean, apparently he is on some other planet, to tell you the truth. In fact, I don't know where Wilson is, to tell the truth, except he and Harris seem to agree on fascist initiatives.
Okay, I've got to leave some time for questions, but I just want to end here that I want you to withdraw -- I'm making a demand on you as a citizen. I'm asking you -- that's all I can do -- to withdraw this bill, which has got so many flaws in it, which apparently was drafted without adequate consultation with citizen groups, and start over again. Start being guided by the Charter of Rights and Freedoms, the top law in Canada, which Ms Danley referred to, because I'll tell you, there's going to be a bunch of charter challenges in the court. If you're prepared to fight that's fine, but you're going to be challenged. There are going to be charter challenges under section 12, section 7 and section 15. So I just want you to be prepared.
That's all I've got to say. Thank you. Questions?
Mr Ramsay: Don, thank you very much for your presentation. In fact, I see there's much more there than you addressed today. I'll complete that because I see you've got a chapter on emergency treatment, which we're certainly concerned about, that I'll go through. You go on about notice of continuance. So I'll finish going through it. Would you have a suggestion, since the Advocacy Act is being repealed by this government and because there are financial restraints, on maybe what type of a replacement could be put in place for advocacy in Ontario?
Mr Weitz: Sure, I have some ideas. Given the fact this government has killed government-supported, sanctioned advocacy, so there's no possibility of investigating systemic advocacy, I think the best that can be done is to support those groups that already have some kind of a track record in being advocates, and there are some probably attached to legal clinics. Of course, it would be great if the money were made available; I don't know how much, but as far as I'm concerned there really can't be enough to support grass-roots, citizen-controlled peer advocacy. I myself am thinking of getting much more actively involved in this whole area of community-based advocacy. Anyway, that's all I've got to say about that. It's too bad it's being killed.
Mrs Boyd: Thank you very much, Mr Weitz, for your presentation. I think it's really helpful for us to be reminded of how many treatments have been considered low-risk and very efficacious by medical and psychiatric doctors in the past that we now know in fact to be quite destructive. The insulin coma issue is one, but there are many, aren't there, that have been used over the years?
Mr Weitz: Oh, yes.
Mrs Boyd: Their advocates come and tell governments how important they are and in fact get research dollars for doing them and fight to make sure that they can continue to provide those treatments in spite of the damage that can be seen to be caused.
Mr Weitz: I'll tell you something: Fortunately, insulin shock stopped in the mid-1960s or late 1960s in Ontario and the United States. Of course, the real reason why it stopped was because there were deaths and quite a few serious medical complications; the real story about insulin shock hasn't been told yet, as far as I'm concerned. But as we speak, Ms Boyd, the Clarke Institute is getting money, probably close to $1 million, to do continued research and monitoring of electroshock. That's the shock shop of Toronto, okay? The Clarke. As far as I know, that's the shock shop in Ontario. They have a separate unit. People are getting brain-damaged as we speak, including permanent loss; they don't remember. I mean, this is allowed. Who's to speak for them? Now there are no advocates in the Clarke; there never have been. There will be no advocates in any health facility to help people say no and to get redress or appeal.
This violates the charter, as you know, because there'll be no appeal mechanism. You're not being informed. This is a crime against humanity. I'll say it again: Electroshock is a crime against humanity, just as insulin shock was, just as the drugging of neuroleptics is. No one is speaking out. No nurse that I know of has spoken out against it. Certainly no medical doctor has. They're a bunch of wimps in Canada. There are about about eight who have spoken out in the United States. We have none in Canada who are concerned about the brain-damaging effects of this treatment, the drugs and shock.
Mrs Boyd: Dr Thomas Szasz calls it the second sin.
Mr Weitz: Yes. I wish we had someone like Szasz here.
Mr Parker: I just want to say that I'm very grateful to you for coming in this afternoon. I listened carefully to every word that you had to say. I think we will all find your comments and your recommendations very instructive. Thank you, sir.
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ONTARIO RESIDENTIAL CARE ASSOCIATION
The Chair: Next is the Ontario Residential Care Association, Mr Rick Winchell. Welcome.
Mr Rick Winchell: Last week you heard from a regional representative of the Ontario Residential Care Association when you were up in Ottawa. I'm the association's executive director and I appear today on behalf of our members across the province.
As you're aware, ours is a voluntary organization of retirement and residential care owners and operators. The association is constantly evolving. In fact, over the past three years our representation of care homes has virtually doubled to more than 220 facilities. We specialize in providing personal care and assistance with activities of daily living for about 15,000 residents. To deliver the care our member facilities employ about 10,000 people.
Across Ontario there are approximately 23,000 residential care beds. The average age of residents who occupy those beds is about 84 years old, an increase of five years over the past decade. In some jurisdictions in Ontario residential care facilities also are home to a younger population of disabled and post-psychiatric residents.
Residential care plays an important role in the long-term-care continuum. We fill the increasing gap between home care and the care and support services delivered by nursing homes and homes for the aged. As our population continues to age and the demand for a limited number of long-term-care beds increases, we fully anticipate the contribution of our sector will continue to grow proportionately.
With the exception of the Residents' Rights Act, 1994, which really involves what I'd call inappropriate application of the Rent Control Act and Landlord and Tenant Act, residential care facilities are not provincially regulated. There are a number of municipal bylaws which, for the most part, are inconsistent and questionably enforced.
What sets our member facilities apart from non-member residential care providers is our comprehensive standards evaluation program. No facility is accepted for membership without passing a thorough, independent operations review. Even then, we have different levels of certification and re-inspect any care home which undergoes a change in ownership or demonstrates gross non-compliance with our standards.
My Ottawa colleague last week pointed out that we participated in committee hearings involving these acts in the early stages of the previous government's mandate. Like many health care provider groups across the province, we expressed concerns around the Advocacy Act.
We strongly believe that by its own definition a successful advocacy initiative should result in the need for few, if any, provincially designed advocates, since the spirit of the concept involved moving towards self-advocacy. In fact, the residential care environment has long promoted the rights of residents to make their own personal decisions. It is our belief that delivering quality care can only occur when done in a setting that encourages individual dignity and autonomy.
We urged the previous government to test its Advocacy Act on a pilot basis, since we were concerned with the complexities of the proposed system. We were concerned that the system carried the potential to promote confrontation between caregivers and advocates. We have qualified registered and support staff who contribute to a caring environment. Most importantly, our staff is committed to delivering care which is based on the stated health and lifestyle goals of our residents.
We applaud the government's move to repeal the Advocacy Act. Given the nature of our client base, we further endorse changes involving the Substitute Decisions Act and the Consent to Treatment Act intended to reduce red tape and strengthen resident support through timely care delivery.
We do, however, suggest that there may be an expanded role for the public guardian and trustee to intervene on behalf of our residents when family members or designates demonstrate ongoing negligence. The PGT has historically been reluctant to investigate matters on behalf of residents.
As it stands, providers have limited options in dealing with negligence. By way of example, I recently received a call from a facility administrator who wanted advice regarding an extraordinary payment problem. Despite countless attempts to collect accumulating arrears, the resident's daughter built up a five-month debt.
The administrator enquired about eviction procedures, something which I can tell you that in my 10 years with this association I've not experienced. She had no intention of actually evicting the resident. On the contrary, she was actually considering taking the resident to her own home as a stopgap measure while she works with the area placement coordination services for an alternative solution.
The only leverage that this administrator has to settle the account involves a court-ordered eviction under rent control laws, which is clearly not in the resident's best interests. Furthermore, she strongly suspects that financial abuse could be the source of the problem. A court order is currently being sought in the hopes that the daughter will finally respond; she's been ducking every request to this point. Meanwhile, the resident remains in the facility and the administrator continues her chase for the daughter. Clearly, in cases such as this, the involvement of the PGT would be a much-welcomed assistance.
We have other suggestions: It's our belief that rights advice, as it currently is detailed in the act, is a system that is both restrictive and one-dimensional. We support the government's position to delete the formalized rights advice from the Consent to Treatment Act. People familiar with residential care settings will know that, as a standard of practice, registered staff will provide rights advice and non-registered staff, such as administrators, are committed and willing to provide residents with rights advice when needed. We prefer a flexible approach, as opposed to the cumbersome system that exists currently.
We also suggest that there may be merit in applying the hierarchy of consent to include residents of residential care and retirement homes. It seems both impractical and costly to force family members to hire a lawyer to arrange for a power of attorney in cases where residents are deemed incapable of making a decision.
We also wonder if there may be further merit in expanding the personal assistance plans to include services beyond just long-term-care facilities, because as you all know, personal care planning is equally important in the delivery of all long-term-care services, including residential care.
We think, however, that the capacity threshold as proposed in Bill 19 may in fact be too high. The proposed concept could be counterproductive if the approval for a care plan by a substitute decision-maker actually overrides the ability of residents to make routine daily decisions involving their personal care. Encouraging residents to participate in routine decision-making is in fact a vital component of any meaningful personal care program.
My Ottawa colleague also addressed the revolving door syndrome that we as residential care operators experience with our post-psychiatric population. It's our belief that inclusion of the Ulysses contract, coordinated perhaps through social services, could achieve a couple of important goals.
First, when a general welfare assistance resident's condition deteriorates in an independent community setting, appropriate care decisions could be made on behalf of that resident based on his or her wishes, which may have been expressed at a healthier time.
Secondly, care intervention could occur early enough to avoid costly and unnecessary readmission to a psychiatric facility. So through the Ulysses contract, a person showing signs of deterioration could be readmitted to the familiar and supportive residential care surroundings of his or her choice.
Overall, we are pleased with the proposals as they are laid out under Bill 19. It's our hope that our comments today have been productive and we thank you very much for the opportunity to appear before you.
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Mr Marchese: Mr Winchell, thank you for your presentation. I'm tired, so I'm more likely to be more gentle with those with whom I disagree. The way I see it, I like defending those who are likely to be abused by a system. I like the idea that we have systems in place that make sure that we deal with negligence, exploitation and abuse. It worries me and it concerns me when a number of caregivers and individuals who have suffered abuse come in front of this committee saying: "We need the Advocacy Act. We need the commission. We need right of entry. We need rights advice." So I take my advice from them, because they're the ones who are closer to the problems. I understand what doctors say, I even understand what a few of the lawyers say about how some of these things affect them, but on the whole I am guided by the people in the field and those volunteers and those caregivers and many others who are close to people who suffer negligence and/or abuse.
Being guided by that, it concerns me when people like yourself come here and say: "We're happy that the Advocacy Act has been repealed. We applaud the government's move to repeal it." That concerns me. You then say as well, on a separate point, "We suggest that there may be an expanded role for the public guardian and trustee to intervene, on behalf of residents, when family members or designates demonstrate ongoing negligence." Interesting suggestion, but like the Human Rights Commission, which is there to support people's rights, it's driven by complaints. If a complaint doesn't get there, it's as if the complaint doesn't exist. So we all assume that there's no problem.
We need a system in place that is able to get to those abuses, a system that advocates generally for all those people. We need a system that allows people to be able to enter premises where it is suspected that there might be a problem, so it can be dealt with. Someone needs that authority; otherwise volunteers and other agencies that deal with these problems can't get to the problem. As much as that proposal seems useful to you, for me it doesn't do the job of getting to the real abuses. Do you have any suggestions or comments to what I said?
Mr Winchell: What if I said no?
Mr Marchese: I'm sure that it would be simple enough.
Mr Winchell: I'll start with the last point first. The fact is, I can't speak for the entire health care system. I'm speaking specifically about the residential care sector. I personally, having spent the last 10 or more years working in this particular sector, believe very much in the concept of professional, caring staff who have enough common sense and antennae, if you will, to spot problems before -- I think there's not enough credit given to the people who in fact are working with the residents day in, day out. That's the way I would respond to your first question.
The second point: I'll take you back to 1973-74. I was this province's very first patient ombudsman, at the Lakeshore Psychiatric Hospital. It was a test, a pilot, and I can tell you from very personal experience that done in a non-adversarial situation it in fact can be a part of the whole therapeutic milieu. I'll go as far as to say that in many cases the staff initiated the calls to my office because they saw the merit in assisting the psych patient to pursue and investigate situations.
But I will also say that when you take that system, and I don't know how to articulate this any better than to say, when you shift it into an adversarial environment, you've defeated the whole purpose of trying to assist both staff and residents. I can also tell you that after a while, when you get into -- and believe me, I defer to the experts today, but I have heard that since that pilot has expanded into the psych system, it has become extremely adversarial. I guess my problem is that when we talk about advocacy, I believe that educating people to understand their rights is important. I do not believe that having a bunch of police going around standing over the shoulders of care providers is the solution. That's the way I see and interpret the current --
Mr Marchese: I understand. There's no doubt that many of the people who provide care to vulnerable people, people with disabilities and the elderly, are doing their best. There's no doubt about that. I'm concerned about where there are abuses and how we deal with that. Your suggestion is that what we have in place is controversial or is --
Mr Winchell: Adversarial, and ineffective.
Mr Marchese: In my view, if you don't have that system in place that we are recommending, then everything else in terms of how we deal with abuse is hit and miss. We don't know how to get to those problems. If we're lucky enough, we'll find a problem and we'll be able to deal with it, because there's no systemic way of getting to the abuse. I'm not quite sure what you're talking about when you say "some non-adversarial system," but I'm not aware what you're proposing that gets to the matter of abuse.
Mr Winchell: The fact is that it doesn't need to be adversarial. When you start to appoint quasi-judicial people with legal backgrounds, I guarantee you, you are inviting an adversarial system that does no one any good. I can only speak from my own experience. I worked four years as a patient ombudsman. I did not have problems with staff, I did not have problems collecting information and I sure didn't have problems getting the support of legal aid or any other source that I needed to resolve a patient's problem. I'm sorry, I've lived in a situation where it's not adversarial; I do not want to move to a situation where it is. And I know that the one that's not adversarial can be effective. That's my own personal experience.
Mr Parker: Thank you very much for coming here this afternoon and for sharing your thoughts and views with us. It's nice to hear that you see much in the proposed bill to support. We're grateful for that support.
We've got some time here. I wonder if you could just help me out with one element in your paper that I didn't quite grasp. It's towards the bottom of page 3, the second-last paragraph towards the bottom, where you refer to section 18. Your suggestion is that we apply "the hierarchy of consent (section 18) to include residents of residential care and retirement homes." Can you just flesh out that for me?
Mr Winchell: Yes, sure. Under the hierarchy of consent right now, my understanding -- correct me if I'm wrong, any experts -- is that it applies only to those family members involved with residents in long-term-care facilities, those being nursing homes and homes for the aged, so that when the person becomes incapable of making decisions, there is a list, starting with power of attorney and working its way down. What we're suggesting is that you may want to consider applying that hierarchy of consent to include family members of those in residential care facilities. Did I explain that?
Mr Parker: I think you did, and I think that you have imposed a limitation on this --
Mr Winchell: Okay, maybe I have. I stand corrected if I have. The way I understand it right now, it's limited to the long-term-care facilities, and residential care, as it's defined today, unfortunately does not fall under long-term care. We are a very big part of the long-term-care continuum, but we are not defined or recognized by government as long-term-care providers.
Mr Klees: Mr Parker, could we just ask staff to clarify that point for us?
Ms Trudy Spinks: I don't normally comment on the health care consent side, but it's my understanding that the way part IV of the Health Care Consent Act is drafted now, it applies to long-term-care facilities -- nursing homes, homes for the aged and homes under the Charitable Institutions Act -- and that there is regulation-making authority to add other facilities there, but that at the moment it only applies to regulated long-term care.
Mr Winchell: So we in fact are not covered by that section; the hierarchy of consent does not apply to any members of families who have family members in retirement homes.
Mr Parker: Okay, thanks. The instruction we're getting from staff there, if we've all understood the provision correctly, is that that could be addressed by way of regulation. Thank you for your guidance on that point.
Mr Klees: I'd like to pursue a matter with you that has been discussed by others here, and that is that we're all aware that there are abuses in the system. I've personally had opportunity to be in homes for the aged where, quite frankly, I didn't like what I saw. What I would like from you, as someone who has a vested interest in ensuring that that industry is providing quality care, is, what can be done to ensure that the standards are maintained to the standards that you, I know, insist on probably for the facilities that you're directly involved in?
Mr Winchell: I could give you a very long-winded response to that. You're hitting a hot button for me that doesn't necessarily involve just Bill 19. We have for a long time worn a path to Queen's Park attempting to establish province-wide standards specific to residential care facilities. The previous government's response to that was to apply apartment laws to care homes, and if you've ever been in a care home, you'll understand that needs change on a daily basis, so to require 24 hours' notice before you go into someone's room is absurd. The application without any modifications whatsoever of the Landlord and Tenant Act and Rent Control Act is totally inappropriate.
We would love to see this government adopt standards specific to residential care, and I don't think it's going to go away. This is one part of the long-term-care sector which is growing in leaps and bounds, simply because there's a cap on long-term-care beds. We would like to see province-wide standards enforced municipally. We would like to see the municipalities charge on a recovery basis. Go into the homes, license them. If they aren't complying, close them down. We believe that not enough is being done to police some of the bad apples in the residential care sector, and believe me, there are some. We know they're out there.
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Mr Klees: What we're really talking about is getting at the root problem. Rather than perhaps being preoccupied with advocacy at the top, let's get to the root problems, solve those problems, and you need less pure advocates to deal with that issue.
Mr Winchell: Absolutely. You're absolutely correct. The previous government refused to listen to any alternative other than applying apartment laws in a care home, when in fact what we were arguing was that if we had province-wide standards municipally enforced under a cost-recovery basis, first, we don't need the advocates to the extent they believe, and second, we can actually enforce the licensing process. Right now there's no enforcement whatsoever going on out there. Deal with that and then let's talk about advocacy. If there's still a need, I'll happily come back here.
Mr Michael Brown: I appreciate your presentation. I had the dubious honour of chairing the committee that did the clause-by-clause evaluation of Bill 121. I agree with you that it is certainly an inappropriate use of two acts that had virtually nothing to do with what you're about.
Anyway, I was wondering, along the same line as Mr Klees, what's the answer here for your industry in particular? We all know there is a need for advocacy at some point, probably done in ways quite different from how the former government went about it. In some situations, and you point one out, we could have the public guardian and trustee move in. It is disturbing to me, knowing that, but it would be more disturbing if it has to do with personal care or health care than the money example.
Mr Winchell: I refer to the public guardian as a last resort. More important, I can guarantee that with the public guardian as a last resort, it provides our administrators with a lot more leverage than they currently have to negotiate with family members who may not be keeping on top of things.
In terms of care, I should also tell you that for the past several years our association has had a very comprehensive consumer information program. Anybody who wants to know anything about residential care can call our 1-800 number. By the way, we're non-apologetic about the fact that we promote our members and the standards they stand by, and we are again non-apologetic about advising people, if they are in the market for a retirement home, to make sure it is an approved member of our association.
Having said that, we field on average 60 consumer calls a week. The majority of those calls are inquiries. Several are complaints, and of those that are complaints, I'd say the majority are involving non-member facilities. I investigate every one of them. Where I run into a problem, though, is that when I'm dealing with a non-member, they can basically tell me to fly a kite. If we go back to what Mr Klees was saying, if there were enforceable standards for retirement homes and residential care facilities, it would make my job a whole lot easier to clean up some of these problems red-flagged by consumers.
Mr Michael Brown: Does your organization have any idea of how many residential care facilities may not belong to your organization?
Mr Winchell: Yes. I can tell you that we represent about 60% of the 23,000 in Ontario. There are those who don't join because it's a voluntary, discretionary dollar they'd need to part with, and then there are those who would never qualify because of our standards.
Mr Michael Brown: Does your organization provide for any kind of inspection of its member facilities on an ongoing basis?
Mr Winchell: Yes, sir, a very comprehensive standards evaluation program that's done on an independent review basis. It depends on the level of certification. If a person gets a two- or three-year, we may not be back for the two or three years later. However, in the meantime, through our consumer program, if I start to see a trend of inordinate numbers of complaints of a member facility, obviously we act upon it.
The other thing is that we have a fairly comprehensive monthly media clippings service, so that even if we don't hear about it or read about it in the Toronto stuff, we get everything from Wawa to Cornwall and we find out a whole lot about stuff going on in our business that routinely would be missed. We're constantly, constantly keeping an ear to the ground.
I could bore you with the details of what we're trying to do to inform the consumers about how to make an informed decision when it comes to residential care. Believe me, it's something we're committed to, and if we had an open chequebook we would have probably achieved our goal by now. But it's an ongoing evolution. We distribute, for example, a very comprehensive consumer directory that details how to evaluate a residential care home, how to make sure that what you're choosing can meet your needs, and if you have any questions, call our 800 number. I could go on and on, but I sense that the Chair is getting -- I just want to say that the whole aspect of educating the consumer is in my definition part of the whole advocacy concept and we're very committed to that.
The Chair: Thank you, Mr Winchell, for taking the trouble to attend today. It's been most valuable.
CONSENT AND CAPACITY REVIEW BOARD
The Chair: Our next submission is from the Consent and Capacity Review Board. We welcome Mr Michael Bay, chair. No doubt the committee has been looking forward with great expectation to your attendance here today, Mr Bay.
Mr Michael Bay: Thank you for the greeting, Mr Chair. I have to admit that I take some satisfaction in seeing a group of people having to share, at least for some weeks or months, in the agonizing task that my board members and me have year after year after year: balancing, on one hand, individuals' civil rights, their rights to autonomy, self-determination, "Leave me alone," with their medical care rights that we owe vulnerable people as a society. It's a rather never-ending battle, balancing those two kinds of rights. It's with pleasure that I watch you folks engaging in the same thing. I don't know whether it's a shared sense of mission or a shared sense of pain. I'm not quite sure.
I'm not going to read the brief we've circulated -- I had a professor who taught me not to do that -- but I have some other remarks for you.
As I note in our brief, the history of the board goes back a long way. Legal supervision of involuntary admission to psychiatric facilities actually began in the common-law world in England in 1817 and exists now in every Western democracy. Our board was created in 1968 under the Mental Health Act. The Consent to Treatment Act, when it came into effect last year, theoretically abolished the old psychiatric review board and created a new one, but that change was really only on paper. In fact, we have members who've served on the board since 1980. I moved from the ministry legal branch to the board in the late 1980s myself and was moved up to the position of chair last year.
Eighty per cent of what we do at the board is involuntary committal under the Mental Health Act. So while we're involved very much in the issue of substitute decision-making and capacity, the primary mandate of the board is really one of public safety.
Unlike most government agencies, the board meets in hospitals, nursing homes and living rooms to dispense its justice. I tell people, kind of laughingly, that we're some sort of cross between the Ontario Court (General Division) and Pizza Pizza. We think of ourselves as a service provider, and we're proud of our level of customer service and our response time.
The board is organized in a way that's quite unique for government. Our day-to-day work outside of head office is managed in nine regions around the province. Each region is headed by a vice-chair who's a lawyer in private practice, who works for the board on a part-time, as-needed basis and does the work out of his or her own private office and provides his or her own staff to us on an as-needed basis. We, I think appropriately, have been referred to as a virtual agency. You can get us by phone or fax and we'll come out to you, but if you look for our offices in the regions, they don't really exist, and they don't cost the government anything.
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Under Bill 19, our areas of jurisdiction rise from 12 to 22. Our costs could increase substantially if these changes are not accompanied by appropriate streamlining, and we need your help for that. We hope that amendments to the bill will extend from seven to 14 days the time period we're allowed to utilize, in some of the cases that come before us, in scheduling our hearings. This would permit more time to allow settlement and allow more flexible scheduling to lower costs. Again, this proposal isn't in the bill that's tabled before you.
We are gratified that the government has included in the bill a number of our proposals for streamlining. I have to say that we found the Ministry of Health incredibly open during the drafting process. Without these changes, we'll find it very hard to do our job within a reasonable budget. As you all know, in every area of government, if we've been assigned new tasks we have to find the money somewhere. I doubt very much whether the minister is going to send a cheque down to my office by courier. I could be wrong, but I suspect I'm not going to see any new funds. I need your help in functioning with what we've got now.
The first of the proposals we've tabled, right up front that we asked the minister and the minister accepted it, was the reduction in panel size. That isn't in all cases. We've asked to be allowed to reduce panel size, at our discretion, in some types of cases. It could only apply in about 27% of our cases, because it wouldn't apply in involuntary committal or things related to that. Our intention is to apply this provision very cautiously, and I give you that undertaking. We expect that no more than 5% to 10% of our total hearings would be with a single member, at least at the outset. This could go maybe to 15% to 20%; it couldn't go over the 26%, and I doubt it would go that high. That means that depending on how many hearings go down to a single member, conservatively, our savings annually would be between $40,000 and $160,000. In the government scheme of things, that's not a lot of money; in managing my board, that's a whole lot of money.
We've been very cautious in our recommendations, and I think they've been incorporated into the bill -- in fact, the drafters were even more cautious -- in defining who could sit as a single member. A single-member board could only be chaired by an individual who's qualified for appointment to the bench, that is, a lawyer with 10 years at the bar. In addition to that, though, a member chairing a single-member hearing would have to have a minimum of two years' experience on the board and have expertise in capacity adjudication, thus preserving, we believe, the requirement for expertise in capacity. They would also have to meet any other criteria that I, as chair, or my successor over time would set for them. It's going to be a very small and elite list of people. It's not meant to be any lawyer appointed to the board. The result, we believe, would be the availability of a flexible and inexpensive way to respond to some applications to the board.
I should add that we're not doing it just for financing. I am, quite frankly -- and I say this as someone who believes in this work and who quite loves it and has been doing it now for seven years -- terrified of going into nursing homes and long-term-care facilities and doing hearings with a three-member panel and a court reporter, and the family on one side and the elderly, frail, very frightened, confused person on the other side, and I have to run something right out of Clarence Darrow. I don't want to do it. What we're desperate to do is to let the air out of the tires. We're moving very quickly to a dispute resolution model in those cases. We find very often that case conferencing hasn't been done etc, and if we can go and do those sorts of things we can make the problem go away to everybody's satisfaction.
But even when we have to have hearings, we're desperate to do something to let the air out of the tires, as I've said, and we think a single member will assist us in doing that, in allowing the member to be a little more flexible, a little less formal, while preserving rights and being sure that everybody is properly heard and dealt with.
To focus that a little more -- and I don't say this flippantly at all -- my concern is that we're going to end up with something that looks like estate battles, except that the body's still warm. I really don't want to do them and I'm quite frightened by them, so that's another reason we're very anxious to move to the single-member model where appropriate.
Another request we've made is the elimination of the automatic requirement for written reasons. Written reasons would continue to be available on request or when the board felt they were necessary. So we would continue to have reasons available while avoiding the expense of paying to have reasons issued in cases where there's no need for them. Don't forget, all the people on my board, except for me, are fee-for-service, so if you want reasons in every case they have to be paid for, and we'd prefer to use the money somewhere else.
We're not saying that reasons won't be asked for or be necessary in 80% or 90% of the cases. We're trying to save the money in the 10% so that we don't end up issuing pro forma, and therefore inexpensive, reasons in each case. We'd like to husband our resources, direct our resources in a way that we can have thorough, usable, educational reasons in the cases where we need them.
I should also point out that it's nothing less than what the courts have. You go to the provincial courts, they don't issue reasons in every case. They issue thoughtful, lengthy reasons when necessary, and in inappropriate cases don't issue at all.
I have to tell you that I've been called to task by our membership since Bill 19 was tabled. They feel that the provision dealing with reasons for decision is lacking a very important element, and that is that the parties can ask for reasons, which is good, but there's no limit. A party could theoretically come a year or two later, where we wouldn't have notes, where it would cost us a fortune, and probably couldn't issue reasons. My members, particularly my regional vice-chairs, have begged of me to suggest that a limit be placed on the time period to request reasons. Probably 30 days is fair.
I have to tell you that we're very gratified that our power to name representatives has been expanded. We've been involved in many cases over the last year where an order would have been appropriate but is not possible because the patient or resident is not capable of expressing agreement, and that's being changed to "expressing opposition."
The current requirement as well that limits the breadth of our orders we've found to be very oppressive of many of the people who come before us. So we're quite ecstatic, on a very personal level, to have that extra bit of power because it hurts us to say no in cases where we could really help people by saying yes. Perhaps that's not a professional position to take, but as individuals we're very grateful for that.
A few other issues of concern to the board. There are provisions in the HCCA for an order allowing the board to order the public guardian and trustee to arrange counsel, but for reasons that seem to defy explanation, these same powers are not extended into the Substitute Decisions Act, where we're now being given the power to review statutory guardianship for property, and they're not extended to the Mental Health Act. So if you're found incapable of consenting to treatment and you're before the board, and it looks like you have legal interests that need defending and you don't have a lawyer, we can do it.
Now, we've only done it three or four times over the year -- this is not a big mover or a big money item -- but we're quite terrified that it doesn't appear that we have that power if you are now under the SDA. With the amendments, if the right to control your finances is taken away from you because you're found incapable and you need counsel, we wouldn't seem to have the power to order counsel appointed. We're troubled by it, and we're also troubled by the lack under the Mental Health Act. I'm not a policy person, but I have difficulty in imagining that there's any sort of policy reason for it. I wonder if it's simply an omission.
Also, on the topic of statutory guardianship for property, I'd like to contrast the powers given the board with the powers that a court has in reviewing a guardianship application. To look at the guardianship test that a court is supposed to apply, first it has a specific test and then it basically has what I call an "if it ain't broke don't fix it" provision. If there's no reason to grant the order, then quite properly the Legislature has instructed the court not to grant the order. If there are other mechanisms in place to guard the person's interests, the court isn't supposed to grant the order.
That's a policy the board has followed for many, many years in financial capacity matters. We think that it's exceedingly important not to inflict the powers of the state on someone if not necessary. We're very troubled that we haven't been given the same flexibility as the courts. We could be in a position where somebody is before us, either under the Mental Health Act or under the Substitute Decisions Act, after appealing a statutory guardianship for property where the person probably is incapable, no doubt about it, but there's no problem; there's the family available, everything is going hunky-dory and there's just no fire to put out anywhere. It appears that we might, because of these provisions, be put into a position where we have to put blinders on and make an order that would be exceedingly unjust, and we're very troubled by it. So we'd ask you again to look at that provision. I'm not sure that again it isn't simply something that somebody missed in the drafting. The exact wording that one needs is in the authority of the court when doing a guardianship order.
The last thing that I want to talk about is the issue of education. I should say that the concern that I express on the issue of education I bring not just on my own behalf and on behalf of the board but also on behalf of Dr James Young, the chief coroner of Ontario, who has asked me to convey his concerns in this regard and express his regrets for not being able to be here. He has conveniently arranged to have to be in Nashville, he told me, at some exceedingly important conference for some time, and he said we have to believe him. His office has assisted me in compiling materials that you have and that I'll be handing up.
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I have to tell you why the issue of education is so important for me personally. Before I was appointed to the board in the late 1980s, as I mentioned, I was at the ministry legal branch and as part of my job I would go to inquests after the death of psychiatric patients and monitor on behalf of the ministry. Time after time we'd hear the same story: Someone had walked into a hospital or been brought into the hospital, the doctor refused to commit them, refused to sign the form 1 in the belief that they didn't meet the criteria. The doctor would testify, "We have all these horrible laws in Ontario that say you have to have a nuclear device in one hand and a machete in the other before we can commit anybody, and this guy wasn't going to commit murder and mayhem for at least 20 minutes, so we had to let him go," kind of thing.
Then we'd hear the witness or the police officer who'd scraped the body off the Don Valley Parkway. Under the Bloor viaduct seemed to be the popular place. Then we'd hear the legal expert, one of these people sitting behind us, or Mr Sharpe, who'd be called to the stand and would explain that that isn't what the Mental Health Act says at all, and the jury would recommend education and outreach. As I left I'd hear the family being interviewed by CITY-TV -- they really are everywhere -- saying, "At least our son didn't die in vain; something's going to be done." And darn it, nothing ever was done.
I attended more of those inquests -- in fact, I've compiled them with the assistance of the office of the chief coroner and you have a summary of those. I've brought full copies of 10 inquests since 1989. The Clemens one you're familiar with, but there's lots more where, in every single case, the jury recommends education and outreach and nothing is ever done.
There is no doubt that many health professionals misunderstand or underestimate their legal authority to treat and admit patients. Ignorance and misuse result in increased expense in the health system and unnecessary suffering and have contributed to many of the tragic situations that I've referred to. The Clemens inquest -- I think you met the parents this morning -- is only the latest in a long series of inquests into deaths that are at least partly attributable to a lack of knowledge of the law.
We receive calls every single day asking for clarification of issues associated with the acts. It's probably not our mandate. I could probably get into trouble for doing it. We answer the calls anyway because I don't want to read the paper the next morning. These calls are frequently from desperate families or friends or confused and frustrated professionals.
I have to tell you, by the way, that there could have been a companion to the Clemens inquest because just about the same time that arose, I got a call -- I was out in Vancouver. I never go anywhere without my cell phone now because of these issues. I got a call in Vancouver while I was out there at a conference, just as important as Dr Young's conference, from a doctor who is chief of staff at one of the major hospitals in Toronto who had somebody in a situation not dissimilar to the Clemens case. But somebody had said, "Call Mike Bay at the board."
She honestly believed that she had to let this young woman slip away and I had to grab her by the scruff of the neck through the phone lines, refer her to the emergency provisions in the act, push her to call her lawyer, explain what she had to do, and I basically said, "Go back to the room and stick an intravenous in her." It was a little anorexic young woman, a terrible situation. And that young woman is still with us. Sorry, I get a little choked up when I think about that one.
But the message is that, certainly in the view of the board, the current educational efforts are not sufficient. Families and consumers are confused and troubled and have no one to turn to for help. Health professionals in institutions are in desperate need of reliable, neutral information.
We believe that two things are required and I think you've heard -- at least people have called me and said they were putting it in their submissions. Maybe they were just jollying me along. It's interesting that one of the few things that unify the patient advocate groups and the provider groups is the need for education.
We think that two things are needed, neither of which is very expensive: Make the board -- we're pleased to take the responsibility -- or make somebody else -- I don't care who you give it to -- make somebody responsible to do education on an ongoing basis in their area. It has to be somebody's legal responsibility so you can justify budget.
It also has to be somebody's legal responsibility so that next time there's an inquest, Dr Young can subpoena the person who is responsible for educating the doctors in the province and say: "Why wasn't this done? What happened here?" If that has to be me, then that's fine. Again, I think it should be the board, but I'm happy if you give it to anybody.
The second thing -- and it's been suggested many times; I didn't make this up -- is the creation of a 24-hour access line to legal advice in consent and health law so that that doctor at Sunnybrook will have a number on the wall in the emergency ward to pick up and get legal advice. It wouldn't be expensive; my guess would be $60,000 to $80,000 a year. The board could supervise it, although not provide it, because that would be a conflict.
The legal branch of the Ministry of Health could take over the responsibility. It could be farmed out on a fee-for-service basis. For instance, now in Nova Scotia I'm told if you're arrested at 3 in the morning and hauled into the police station and you want to talk to a lawyer, they call an 800 number. It's actually a lawyer in Toronto who answers your call, some private outfit doing it through a law line. Again, I think basically it's $60,000 a year that costs the Nova Scotia government. All we really need are maybe three young lawyers with some knowledge in this stuff on retainer on an annual basis and a schedule to split it up three ways and give them beepers and cell phones -- not an expensive business. But we can't live without it.
I'll pass up in a second the inquest verdicts. I've got summaries of the educational recommendations, which I understand have been distributed. One that I particularly remember is Mavis Jones, who was a psychotic woman who many months before her death told her sister that she was going to take her own life on her birthday -- so we knew the date of death months beforehand -- and told her sister what she was going to do.
The sister consulted a local physician, who mistakenly didn't think he could do anything; consulted a local justice of the peace, who mistakenly thought that he couldn't do anything; spoke to the local health unit, who mistakenly thought nothing could be done. This woman spent two months trying to save her sister's life. I testified as the expert at the inquest, one of the most horrifying things I've ever participated in, so you can see that I take this one a little personally. I've been giving this message for about nine years now. I think it's time we do something with the educational issue. I can't put it any more strongly than I have.
My purpose here today was to answer questions, so I'd better shut up and leave some time.
Mrs Johns: I'm going to pull a Frances Lankin from Bill 26 and ask all my questions at once so I get them all on the record. That seemed to be the way they worked in the last committee.
What I really need to know from you is, we've heard a number of people talk about the one-person board, and one of the things that I have tried to comment on is the wide breadth that person would have, the experience he brings to the table. A number of people have suggested that this person needs to be able to assess capacity also, so I'd like you to comment on that and how the one-man board works or how the board works and whether that's a necessary qualification.
The second thing I wanted to know was, with these written reports, if someone didn't call in 30 days for their report and they needed to go through another process again, would that documentation be utilized a second time? Have we lost it forever? That I think I need to know; also, to see if we have to have this in writing all the time.
The third thing is, we've heard criticism about the health practitioner or provider being a party in an application to appoint a board-appointed representative. Can you comment on the need for this, and the downsides?
Mr Bay: Yes. Let me start with the third one first. I didn't hear all of Peter Singer's representation. I wonder if that was in his. I know it's an issue that's concerned Peter in the past. You may have heard it from other folks as well.
This touches on the first question as well. While we're an expert body, our expertise is not as health care providers, though we have a health care professional with us whose job it is to help us understand the professional evidence and perspective. Our job is in hearing evidence, just like a judge does, and making decisions. In the case of appointing representatives, we can't get to square one unless we have some idea of what the incapacity is and what some of the surrounding information is.
Under the Consent to Treatment Act, the provider is not a party, and what we find is that we have to convene in 95% of those cases and then adjourn and subpoena the provider anyway. What we're doing is wasting everybody's time, holding up treatment and causing a roadblock.
We've asked that the professional be a party as a signal to their necessary attendance at the hearing, to their participation. We need them there to help us do our job. If there was wonderful documentation and wonderful reports -- but the world doesn't work that way in these cases. It would cost more money to insist that everybody produce these lengthy reports for the hearing, and they wouldn't look right anyway. That was our recommendation, so I'll take the rap for that one as well, and we recommended it because we've had difficulties without it.
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The single-member board: I mentioned that our job is not to do assessment. We don't assess the patient who is there before us. Patients don't have to come to the hearings, although they do in 95% of the cases. Our job is to hear evidence and make a decision.
The capacity assessors are certified by the office of the public guardian and trustee. Many of those are lawyers. Lawyers have some expertise in that area, although I tend to think less than some other people think, quite frankly. But the people on the board have been doing this for many years. We've asked, and the government has agreed to write in a provision so you and the minister can't find somebody and stick him on my board under this provision who's going to do this. They have to go through two years of training and experience and then qualify to do that. They have to have expertise in adjudicating capacity.
We feel that's all that's needed, again keeping in mind that we don't evaluate the patient. You don't bring the patient before me and I second-guess the doctor; we're hearing evidence and making a legal decision. We certainly feel that the safeguards are there, but that's for the Legislature to decide.
Reasons for decision: There'll be a written decision issued, saying the person is capable, not capable, involuntary, not involuntary; in fact we'll probably expand that to a couple of lines of explanation. Would it be useful a year from now to see those reasons for decision? Sometimes it might be, just like any other documentation in the chart. Yes, I really wish I had the money to produce reasons in every case. I think they're useful to hospitals, I think they're useful to us. The question is whether they're $275 useful, which is the average cost of producing a set of reasons for the province, and whether we can sustain that or we can better use the money somewhere else.
That's a decision for you folks to make. Yes, I'm kind of sorry about that recommendation. I made it anyway, because I don't think we're at a stage where we can say: "These are all the things we need money for. Write us a cheque." We have to be responsible and decide where the priorities are, and that's one of the things that has to give just a little bit. That's certainly our view.
Mrs Johns: Do I have any of my time left?
The Chair: That's been five minutes.
Mrs Johns: Fifty-five minutes? Thank you very much.
From the standpoint of the written report, I understand that everything --
The Chair: I'm sorry, Mrs Johns, you misunderstood. I said that was five minutes.
Mrs Johns: Oh, I'm sorry. I thought you said I had 55 more minutes and I was so happy to take it.
Mr Ramsay: Mr Bay, I would like to thank you very much for your presentation. Just to say to the government, I think it would be helpful for us, certainly for next week, to have government comment on some of the recommendations you've made. I'd be interested in hearing what the government's response is to some of this. That would be interesting in our deliberations next week in clause-by-clause and looking at amendments.
I appreciate very much your -- more than suggestion, your pleading with us to make sure that education be pursued with this so that all the people working with this act will be more up to speed and lives will be saved. I appreciate that and I think that now that the government has embarked upon a new act, that's probably the appropriate time when a new education campaign would have to begin so that people are informed of the changes. It's probably very timely and I would certainly support your suggestion that once this bill is passed, that education program start again so that people know what their obligations are.
Mrs Boyd: Thank you very much for coming. My colleague was just saying we wish you had come the first week so that many of the fears that people have expressed during the time we've been having hearings might have been put to rest. I'm glad that you're here now, and it's very helpful.
As you are well aware, the intention obviously with the Advocacy Act was to have the educational function be one of the major functions of the Advocacy Act. From the time it was passed in 1992, that was the vision. It's not that anybody here disagrees with the educational function; it's just who should do it. I understand from what you said that you think your board, given the cancellation of the Advocacy Act, is the obvious place to lodge that.
Mr Bay: But not necessarily the only one. My concern isn't that we do it; it's that somebody have the legislative mandate to do it.
Mrs Boyd: I gather, since obviously a lot of your recommendations have derived from the fact that you don't have the budget to do this job the way you ought to be able to do it, you would expect a budget that would allow you to do that education appropriately.
Mr Marchese: Or somebody.
Mrs Boyd: Or somebody. You cannot educate without money.
Mr Bay: You can educate without money. I think we have a certain reputation for doing things off the back of an envelope. We need the envelope, but I don't think you need a heck of a lot of money to do things, with respect.
Mrs Boyd: With respect to the one-member board, you're very fond of using it, and obviously the government has learned from you to use the situation of a judge. A judge sitting alone deals with criminal matters and incarcerates people, but of course the burden of proof is much higher under the criminal law than it is under this law. You are obviously operating all the time on balance of probability. You could hardly be operating in any other way, whereas a judge who incarcerates or confines somebody is required to base that decision on beyond a reasonable doubt.
So I'm not sure that, for the uninitiated, that analogy is necessarily the best analogy in the world. That doesn't mean to say that under some of the circumstances you've described, some of the fears of some people about a one-member board might be less. You say that you always have a health care professional offering you health care advice, in other words, there's a staff person who offers you that expertise?
Mr Bay: No, this isn't legislated in all areas, but traditionally the board panel sits with one psychiatrist, one lawyer and one community member. We don't have any staff people; we have one board member who is a psychiatrist.
Mrs Boyd: But if you were one board member, what would you have to have to give you the resources in terms of even interpreting -- you know what doctors talk like. How are you going to know? How are you going to interpret what you're hearing?
Mr Bay: Let me answer both of those. First of all, when I compare to judges, really what I had in mind wasn't the criminal courts; I had in mind the judges who over the years have done the Mental Incompetency Act cases and the guardianship and exactly the same stuff, review of mental health stuff, that takes place in most jurisdictions. The very issues that have been assigned to us have been around the courts for years and they're generally done by a single judge, who may be a generalist, who may be someone with some expertise who does this. With respect, I think the comparison is valid.
The ability to talk doctor talk, if I can use that expression, an expression I'm fond of: I think my board members -- and again, we're not talking about taking Green Hornets and injecting them into this process; we're talking about people who've been doing it. Look at me personally: I've done thousands of these hearings over the last couple of years. I can understand medical evidence. I may need the doctor to slow down and explain something to me.
The one area where I worry just a little bit about the single-member board is that I find that having a doctor with me on the board is of great assistance in those cases where we have a health professional who's trying to pull the wool over our eyes, just like my particular expertise is helping when I have a lawyer who's pulling the wool over our eyes. When we go to our deliberation closed session, it's the professional colleague of the witness who can tell us that the emperor was wearing no clothes.
The single-member board might make the board a little more conservative in its actions. I don't know whether that would even be measurable, but other than that, I think the expertise is there. We have a professional cadre of judges who have doing this for a long time; these are not amateurs.
Mrs Boyd: Did I understand you to say that you would like the act amended to require the health-care provider, whoever that is, to be present at your hearings?
Mr Bay: It's in the bill. The health-care provider is --
Mrs Boyd: Is permitted but isn't required.
Mr Bay: As a party to each of the --
Mrs Boyd: But you're talking about subpoenaing them. Should it be a required presence?
Mr Bay: I don't think we need that. Making them a party is enough of a lever for us; even without them being a party, we've subpoenaed them when necessary, but it's a waste of time and a waste of resources and gotten doctors' backs up. The goal isn't to get adversarial, as we keep hearing, the goal is to make it work.
When we call pre-hearing conferences, which we intend to do in long-term care -- our ultimate goal would be to never hold a hearing. We would like to resolve things pre-hearings. I can't force the doctor to be there under the Statutory Powers Procedure Act unless he or she is a party to the matter. So it's a matter of us wanting to make sure that all the players are parties, so that we can resolve things.
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Mrs Boyd: The lack of written reasons is strictly a budgetary measure. It's not something you would prefer to recommend but it's something that you --
Mr Bay: I recommended it.
Mrs Boyd: -- you feel forced to have recommended because of your budgetary constraints.
Mr Bay: I keep reading about government offices being told that you have to cut this and you cut that. Nobody has come to me and said that you have to chop off 5% or 20% or 150% from your budget.
Mrs Boyd: When you're increasing your workload by this much.
Mr Bay: Well, (a) I'm increasing my workload and (b), as the head of a government agency, I have the obligation to try to work with government policy. I know I'm spending health care dollars and I have an obligation to save anywhere I can.
Mrs Boyd: But in view of the real fear that's been expressed, how much does this cost you a year to present written reasons? You say that in 90% of cases, people would want them anyway. So you're only saving 10% of that cost. Do you really think, with the angst that's been expressed to this committee, that is really a worthwhile motive, if that's your only motive.
Mr Bay: I'm spending about $275,000 a year producing written reasons. You have to add to that some secretarial; that's professional time. If we're talking about 10%, that's real money to me, quite frankly. That could fund about 30% to 40% of the educational budget -- 10% of the reasons.
The Chair: Mr Bay, we thank you for your attendance today. It's been most valuable to everyone here.
PAUL MILNE
The Chair: Mr Paul Milne of Simpson, Wigle, welcome. You are our last submission for the day.
Mr Paul Milne: I know it's late in the day and I don't intend to read my submission. I'd basically like just the opportunity to speak with the members of the committee, and thank you for the opportunity to do that.
I've asked for the opportunity to speak with you today to perhaps have more of an opportunity to bring before you the kinds of planning principles that the act allows so that hopefully, as was mentioned earlier, the concern about the vulnerable may be diminished if we use the legislation positively, in its best sense, to plan for our own vulnerability. That is a wonderful strength of the act. So you're going to hear basically a positive commentary from me.
I had the opportunity after the Fram committee report to be a member of the bar association committee which submitted the briefs on Bill 108 and had the opportunity to submit the second brief. For me, that five years our committee spent together -- I believe it was almost five years -- taught me a lot about formulation of legislation. It taught me a lot about theories we developed versus what has happened in practice.
Today I'd like to direct my comments to some of the wonderful planning tools of the act and how I think the amendments will enhance those planning tools. As I said, I have become very strong in my belief that good planning cures a lot of our concerns about vulnerability and certainly not to diminish that.
What has happened since royal assent in 1992 and especially since proclamation, what I have noticed, and I can certainly tell you many other lawyers have commented to me that they have also noticed, is very much a change in the willingness of people to plan. Before the act came in, there was that stumbling block of being able to only minimally plan in so far as incapacity for property was concerned.
As you know, we had an opportunity but not a great opportunity and we had very little opportunity to plan for our incapacity of the person. I think that really psychologically impeded people from taking that extra time to plan from incapacity, through it to death and through administration of their estates, and that's what we're finding now. It is much more of a process.
What has happened, too, that I think has enhanced that process, is that we found it started with the Conservatives, went through the Liberals and was finished by the NDP. To me, that's quite a compliment to this province because it showed to me quite a commitment of all three parties, as all three parties had an influence over the bill, to private planning. The private planning sections, I felt, were enhanced on a spectrum.
So this afternoon what I'd like to talk a bit about are some of the planning tools in the act and how I think the amendments will affect them. I'd also like to state that I think the approach that's being used this time of the usage of the public guardian and trustee office's experience in changing legislation, to me, is very, very important. That office, from the very beginning, became a central focus of communication, not just from the public -- and many of you know there were thousands of calls coming into that office week by week, was my information -- but there were many, many calls coming from lawyers trying to get help and understand what was before them. It's not just that we have now a government office, but we have an office that has a wide breadth of experience from all spectrums. I think those experiences have been reflected in the changes.
I'd like to comment on just a few of them; I won't go through them all in my paper. The witness attestation requirements -- I know you've heard a lot about that. As a planning tool -- I can tell you there was a tremendous amount of confusion regarding the requirement that the witness have no reason to believe the grantor was incapable, whether it be property or personal care. Was it an active or passive requirement? The passive requirement school of thought said that if they didn't happen to say something or didn't notice in their actions that they may not be capable of giving a power of attorney, you could go ahead and witness the document. The active school, which was the one I subscribed to, felt that you had to set upon a course as a witness to determine that they were capable of giving that document or not incapable of giving it.
The changes I think are suitable for planning and important for planning because, when you plan from incapacity through death, the witnessing requirements on a will now are analogous to those for a personal care power of attorney in the proposals and a property power of attorney. I think that is important for widening the group of those who will witness. We had a lot of problems going into nursing homes and hospitals and obtaining witnesses. I think that will be diminished with the changes. As I mentioned, with the widening of those who may witness, we'll have much less problem.
I do have some concern about removing from the list the child of the grantor or those to whom the grantor has intention to treat as a child. I'd like to talk to you a bit about perception. The issue there, to me, is one, first of all, in balancing who may witness and who may not. Is it important, the child witness? I don't think so, now that the proposals expand that group of people who will be willing to witness these documents. I balance that against not the potential abuse but the perception by family members. Family dynamics in the estate planning circumstance play a major, major role, and a perception that a child has encouraged a parent to sign a document and has witnessed that document, often creates greater problems than actually exist. I find I have had to deal on a number of occasions with those kinds of perceptions. So my own personal view is that I don't think it's really necessary now to exclude the child of the grantor from that list.
Court-appointed guardians of property and of the person: The proposed amendment by adding section 2.1, allowing the court to appoint a person who provides health care, residential-social training and support services for compensation to an incapable person -- again, I quite support that. Those of us who have had long experience before the courts in committeeship applications, as an example, I think can categorically tell you that it is a very difficult application to obtain in court if the judge is not satisfied. Our judges have acted, sometimes, I think, to an extreme in ensuring that the individual was dealt with in an appropriate fashion, with proper restrictions in the order.
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I think sections 25 and 58, for property and personal care, as I mentioned, allowing the courts to set conditions, balance against what I see growing, namely, people outliving their relatives and our mobile families, leaving no one at home with potentially an incapable parent. Parents who come to me and talk about the fact they'd like to appoint their doctor, for example, or a nurse who's been attending on them, as an attorney and are prohibited from doing so, at least now, for the courts, the courts aren't prohibited from doing so, and I very much support the proposed amendment.
The disclosure of personal information by regulation, the three named individuals or groups, the ability to allow disclosure for specific purpose and then to regulate that disclosure, again, I support. I understand the concern all of you have to wrongful disclosure of that kind of information, but the proliferation in the private planning of the need for that information to make private planning work is why I support it.
Let me give you some examples. In drafting powers of attorney, it is now becoming a custom for grantors to exclude someone who's been appointed if they themselves are incapable of their own personal care or if they themselves are incapable of managing property. The way that's determined quite often in the appointment is by a letter from a doctor. Remember, that's outside the act. That is a personal appointment and a condition on the appointment. Obtaining those letters from doctors has always been very difficult, and rightfully so. Similarly, obtaining that kind of information for applications to court sometimes is very difficult and we go through a great deal of time, trouble and effort trying to get them for those applications to court. I think the limitations you're putting on it by limiting the use or the purpose and controlling it is a safeguard that doesn't frighten me personally.
The obtaining information about the grantor's property -- again, I'm quite supportive of that. I'd like to see that expanded to include RRSPs, insurance policies and so on. I've run into the problem already of attorneys not being able to get that information and policies lapsing because the premiums aren't paid. So again, it's a private planning mechanism that I have no difficulty with.
Similarly, the ability to obtain a will, to me, is very important because it telegraphs to grantors of powers when they're preparing them that if they leave specific items of property in a will, they can protect those items of property in their power of attorney by setting conditions that those items can't be sold. Good planning. So I would like to support those suggested amendments and then add in RRIFs, RRSPs and that kind of thing as part of the property.
An area now which is more of a concern to me, multiple powers of attorney and the conflict of laws section. Clause 12(1)(d) that allows for multiple powers of attorney, if you include the statement that "there shall be multiple continuing powers of attorney" -- now, we're only talking property here, as you know -- is confusing. It confuses me. I'm not sure what it means. I don't know if that means it's mandatory that there shall be other powers, multiple powers. I don't know if that means there shall be powers in existence before the current one is drawn. I can tell you that I have very few clients I've ever run into that even understand what "multiple powers" means.
One way of dealing with that is, instead of treating "shall" in its mandatory sense -- if the intent there was to authorize multiple powers, then perhaps that sentence might be changed to read, as I've indicated in my submission, something to the effect of "a continuing power of attorney is terminated when the grantor executes a new power of attorney, unless the grantor authorizes multiple continuing powers." It's more of an authorization than is "shall." A preference for me is not to do it necessarily that way but to simply allow multiple powers by allowing the revocation power to accept other powers of attorney, so that if bank powers have been signed and if -- I'll give you an example: I am using limited powers in succession planning for a family business, where a limited power to vote the shares of the business will be given to those who will manage it in an interim in the event of an unlikely death or an untimely death. How do we keep that from being revoked or from revoking a general power?
Frankly, I think it again comes back to the original themes, and one of those is the personal responsibility of the planner. Talking about the themes of the Fram committee, whenever I run into trouble understanding the act, I go back to those themes, review them and kind of bring myself back. I would personally favour that it's the responsibility of the grantor of the power to accept those that he or she wishes to remain in force. That also allows us, then, to move out of this jurisdiction, particularly in the United States.
I am quite concerned about section 85. I'd like to describe to you briefly how some of us are dealing with it. We have a lot of snowbird clients. Because they're spending so much time in Florida, they often create a relationship with a law firm there. What we discovered is that they have gone in and planned in Florida in case they have a problem in Florida, and they've come to us and planned in Ontario in case a power of attorney is needed in Ontario. The end result of that kind of planning, to me, is the possibility of great confusion. If we're able to clarify the multiple powers section so that it's more easily understood, it allows us to work with the Florida attorneys to ensure that the Florida powers include the elements necessary to make the Florida power an effective power if it's brought into Ontario.
I'd like to give you an example. With a Florida personal care power -- they don't call it that, but it's the same thing -- someone is injured, flown home with the personal care power. In order to be valid here, it must meet the formalities; it does. But then the next question is, if it meets the formalities, does it, for example, if it has a revocation power, immediately revoke the Ontario power when it's brought into this jurisdiction? I frankly don't know the answer to that.
Secondly, in our conflict of laws section, whose law prevails? If the Florida power, which I have copies of, has a different definition of incapacity, it's brought into Ontario and becomes valid in Ontario, is it that definition that's used in Ontario or does Ontario prevail? I don't have answers to those questions. I simply ask the committee, in your deliberations, to perhaps give some consideration to that.
Finally, I'd like to talk about something that I think is the most important matter to me, and that's personal care powers and compensation for personal care. When I started my own drafting of this, I had the good fortune and time to work with Dr Molloy, who was Dr Singer's -- I understand Dr Singer was here earlier today. In my view, they're the pioneers of health care directives in this province, if not this country. I do have a fundamental disagreement with both of them, which I'd like to raise tonight.
But getting back to Dr Molloy, we did a study of 50 clients in a row, and they answered questionnaires. Something I learned in reviewing their powers and starting to relate them, which normally we don't do in private practice, was that in the main people tended to appoint a male as their property attorney and a female as their personal care attorney. In questioning them, it was the issue of confidence in the individual's end skills.
If you go back to your legislation, you all know there's compensation clearly provided for property, and there isn't compensation presently for personal care. Now, the way most of us have been getting at is, as you know, we have been directing that compensation be paid to personal care attorneys as one of the conditions in the personal care power, and in the property power then directing the property attorneys to pay the attorneys for personal care. Now, I can tell you that some people are very uncomfortable with that.
I very much support the proposed amendment by regulation to establish payment for personal care attorneys. Again, looking at our sample and my impressions since our in effect anecdotal study, many of the women who are appointed work, probably full- time, many of the women who are appointed have children, and to add on the burden, with no pay, of looking after an infirm parent while at the same time a brother is being paid for doing a much lesser job in a property sense, to me it is not fair and I think tends back into the family dynamic situation to create difficulties that I don't think any of us intend to create.
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I would like to go further and suggest to you that you bring in a provision similar to the property power, and that's that the grantor can set the rate of pay higher or lower than the prescribed rate. That's what I suggested in my submission.
I'm not here, I think, to try to simply point out this anomaly that I consider to be in the present legislation, but from a family perspective and from private planning, I think it's really important that legislation be enabling so that then people who are giving powers of attorney can, while they're doing it, look at their own families, appoint those whom they have confidence in and then remunerate them, if that's appropriate, and let them make that choice. I think that's very important and I very much recommend that to you.
Thank you. Those are the end of my remarks.
Mr Ramsay: I just want to thank you very much for coming and contributing to the process. I'm sure many of your ideas that you've presented today will see themselves in amendments next week.
Mr Milne: Thank you.
Mrs Boyd: I didn't quite understand you on page 3 of your submission. I thought I understood that you were saying you did not want witnesses to have to attest, and you agreed with that change in Bill 19, but I thought you also favoured the continuing exclusion of a child of a grantor.
Mr Milne: Yes, I do.
Mrs Boyd: I think just at the end of what you said, it sounded as though you said the opposite, so I'm delighted to hear that, because I think that's a balance and check that --
Mr Milne: I apologize and I do favour it. Yes.
Mrs Boyd: Good. Because we agree with you that that is an issue. It's been brought up by many of the people who have come, so I think that whole issue of conflict of interest is one that needs to be addressed. That's why most of the consumers who have come have not liked the idea of a paid caregiver, a compensated caregiver, to be able to hold the power of attorney, and I share their concern, because unfortunately there are enough horror stories of how estates have been depleted by that, and I think that's a bit of a problem.
Can you think of any way in which sort of an overwhelming conflict-of-interest clause might be added to the interpretation clause of the Substitute Decisions Act and the Health Care Consent Act that might in fact resolve some of those issues around conflict of interest?
Mr Milne: You know, I've thought a lot about that, and I don't have an answer. The problem with conflict of interest is being determined under definite, and when I think of that and then I relate it back to the planning process and I relate it back to my conception of families, I guess for me it first of all is the responsible decision of people in the planning process.
I also have no concern, for example, in the court appointing someone who is receiving compensation, because I have great confidence in the courts from my time in practice, and our judges.
So to protect the potential conflict issue, I'm concerned that this whole other realm is diminished, and I don't have an answer. I've thought a lot about it and I don't have one.
Mrs Boyd: But you really feel that the court would be able to resolve that with the conditions that the court could apply.
Mr Milne: Very much. I can tell you, I've had a rougher time on committeeship applications than any other aspect of my practice. The judges -- I think part of it's their heart. I also think it gives them an opportunity to really look out for the vulnerable. So that's why I personally have that confidence. I cannot tell you of a circumstance where I don't think a judge did his or her job, in my 24 years.
Mr Marchese: I wanted to comment on your last comment, number 6, compensation of attorneys for personal care. I thought that was a very useful observation. I think it was the first time it's been raised by somebody, but I think you're very right. Usually compensation for property applies to men, and for personal care women are probably designated. There's an unfairness around that, and I think we should look at how --
Interjection.
Mr Marchese: Sorry, Mr Parker, that's what I thought. I think the issue you raised is useful and I think we should look at how we deal with that by some wording, because I think you're right.
Mr Parker: Just a few remarks. First of all, thank you very much for coming here today and for assisting us with a very cogent and well-presented paper. Also, when you get back to the office, say hi to Fritz.
A question that I just wanted to address: You touched on clause 12(1)(d), which is the clause that automatically revokes a power of attorney if a new power of attorney is entered into. You're not the first one to discuss this with us. We've had a few recommendations that this provision be taken out altogether so that unless the donor specifically revokes a prior power of attorney, then it remains in place despite the fact a new power of attorney has been prepared, and a person could accumulate powers of attorney over time. Could you give us your thoughts on that proposal?
Mr Milne: I have some difficulty with that proposal because of what I've seen, the proliferation of forms; they're everywhere. About a year ago, even before proclamation, I started asking clients when they came in to do their planning if they had a power of attorney, and I found that quite often, more often than not, they had them in their pocket or at home. They'd already signed a form, but yet they were feeling uncomfortable. Then I started asking clients where they've signed them, and they don't know. It's all over the place. In specially large estates, when we started delving into it, I have discovered they are everywhere: at their banks, their credit unions, they've got them in their drawers at home.
The problem of the proliferation of the form with planning and then with future planning to me is that we're going to go away from the certainty of good planning. We're going to get into that realm of conflict. Now, that may be good for lawyers in resolving conflict, but I don't think it's what we should be doing or do best.
To come back to your point, no, I would not favour that they all stay in place. I would favour that we have the opportunity that we revoke them unless we accept particular powers, because the curative section also comes into play, that third parties can rely on a power if they have no actual knowledge. That curative section should stay, because we do need to protect those third parties and bring the onus back to the grantors of power to be responsible in their own planning and clean up this morass of powers they've got out there. That's my belief.
The Chair: I have one question. If in fact it's perception in children witnessing powers of attorney that concerns you, would it not be a logical extension to not permit them to act as attorneys also, where they are actually in a position of power?
Mr Milne: No. That's not my belief. First of all, I think the most important aspect of all of these documents that people bring forward is their confidence in those whom they appoint. Blood is 90% of the appointments. I guess if people look at that document as a job description for someone, perhaps for 10 or 20 or 30 years, for example, Alzheimer's for five years, 10 years before you die, then that piece of paper becomes a job description and it becomes a support group.
Now, good planning says you never appoint one. So where it's children, quite often I find the appointment is a child, but then you couple other people with that child, either other children or friends, with good planning.
To remove the ability to have your child be your attorney I think would be a mistake of all mistakes, because that's what planning is all about, and those are the people that can discharge the duties and obligations.
I can say, Mr Chairman, that I was sceptical in the last act when I saw the duties and obligations of attorneys. So I made them up into a job description that you would have at work. As part of Dr Molloy's study we did, we asked people who had no knowledge of these things, what were their expectations? To my surprise, most of them came up with the group, just about the whole group of expectations that I felt were too onerous. So I learned right away that they weren't too onerous, if people can come up with them on their own.
Now, the reason they came up with them was because they felt that the people they were appointing, namely, their children, would be able to discharge that kind of obligation. So, no, sir, I really think it's important that we stay with that ability.
The Chair: Thank you. We are adjourning till 9 am tomorrow, February 21, 1996.
The committee adjourned at 1701.
ERRATUM
No. Pages Witness name should read:
J-5 J-74, J-75 Mrs Marilyn Heinz