ROMAN CATHOLIC ARCHDIOCESE OF TORONTO
ADVOCACY RESOURCE CENTRE FOR THE HANDICAPPED
ETHNO RACIAL PEOPLE WITH DISABILITIES COALITION OF ONTARIO
ONTARIO ASSOCIATION OF PROFESSIONAL SOCIAL WORKERS
ADVOCACY CENTRE FOR THE ELDERLY
ONTARIO PSYCHOLOGICAL ASSOCIATION
CONTENTS
Wednesday 7 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
Roman Catholic Archdiocese of Toronto
Rev Thomas Lynch
College of Nurses of Ontario
Anne Coghlan, president of council
Elisabeth Scarff, director of policy
Margaret Risk, executive director
Edith Hughes
Advocacy Resource Centre for the Handicapped
David Baker, executive director
Patrick Worth, past president, People First
Etta Ginsberg-McEwan, board member
Ethno Racial People with Disabilities Coalition of Ontario
Rafia Haniff, chair
Hospital for Sick Children
Dr Alan Goldbloom, vice-president, patient programs
Dr Christine Harrison, director of bioethics
George Graham Mainer
Ontario Association of Professional Social Workers
Dan Andreae, president
Doris Guyatt, consultant
Cathy Clothier, director of social work and discharge planning, Riverdale Hospital
Advocacy Centre for the Elderly
Judith Wahl, executive director
Ontario Hospital Association
Marion Leslie, chair, task force on consent, substitute decisions and advocacy
Carolyn Shushelski, legal counsel
Ontario Psychological Association
Dr Gregory Hamovitch, president
Dr Ruth Berman, executive director
Margaret Rintoul
National Trust Co
Glenn Davis, national product manager, wills and trusts
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:
Caplan, Elinor (Oriole) for Mr Conway
Clement, Tony (Brampton South / -Sud) for Mr Leadston (morning) and Mr Klees (afternoon)
Grandmaître, Bernard (Ottawa East / -Est) for Mr Chiarelli
Johns, Helen (Huron) for Mr Hudak
Marchese, Rosario (Fort York) for Mr Hampton
Clerk / Greffière: Bryce, Donna
Staff / Personnel: McNaught, Andrew, research officer, Legislative Research Service
The committee met at 0902 in room 151.
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.
ROMAN CATHOLIC ARCHDIOCESE OF TORONTO
The Chair (Mr Gerry Martiniuk): If I may call this meeting to order, this is the third day of hearings of the administration of justice committee into Bill 19. This morning we have Father Thomas Lynch present, representing the Roman Catholic Archdiocese of Toronto. Father Lynch, you have the floor.
Rev Thomas Lynch: Good morning, Mr Chairman, and members of the committee. I'm here today to speak as a representative of the Roman Catholic Archdiocese of Toronto, the spiritual body that's responsible for over one million Catholics in Toronto and area. The archdiocese is closely involved in health care in a wide variety of ways both institutionally through hospitals and centres of care and personally and professionally in the lives of Catholics. As a lecturer in moral theology at the Toronto School of Theology with a specialty in bioethics concentrating on medical decisions about the end of life, I also have a personal interest in the concerns addressed in Bill 19.
This bill is a much-needed corrective to the troika of bills that it's supplanting. It bears the hallmarks of more thoughtful care in its preparation and consultation with a wide variety of professionals in various fields. It is in that spirit that I offer these remarks for the further improvement of the proposed legislation. Though there are several areas to consider, I shall concentrate on three: the concept and rights of the family, the inclusion of nutrition and hydration as treatment and the lack of a conscience clause for health care professionals.
First, the concept and rights of the family: In our day the family is a much-threatened institution. Not only are social forces undermining much of the innate cohesiveness of the family, but there are powerful philosophical currents that seek a new understanding of the individual. These have direct repercussions as to legislation and action. If the family is seen merely as a grouping of individuals who are together by happenstance or for the purposes of convenience but who remain as separate entities, then the notion of duties and obligations being incumbent upon those family members is tenuous at best. The church has always looked at families as the building blocks of a stable society, and we would wish to strengthen those bonds which hold them together.
The rights of the family are prior to the rights of the state, since the larger political body always exists for the good of the smaller. It is the principle of common good that speaks of the proper role of the larger political body, in our case the provincial Legislature, as being to safeguard the accumulated goods of the smaller constitutive bodies, families and individuals. This is vital to keep in mind, for it's not the government that grants these rights but rather individuals and families that are the innate possessors of them. Thus, any legislation must be crafted so that the presumption of rights would rest with the families and individuals who collectively make up our polity.
The concept of radical autonomy that we see as so prevalent in our western thought would say that a person exists as an entirely separate unit that only relates to others as it chooses or is forced to do so. In effect, the person is totally free or she should be. However, this autonomous ethic flies in the face of our lived reality. None of us can exist without others. To be an adult or child, but especially a child, is to be dependent to some degree. Indeed to be human is to live in an interdependent complex of mutual arrangements and understandings.
These cannot simply be reduced to what are commonly called marketplace ethics. Instead the bonds of altruism, support and love are the strongest and most lasting of human connections. They transform us and define us. I am child, sibling, father, mother, grandparent and so on. Nothing legislated or in a merely chosen course can change that. Because a relationship of this order of reality is not amenable to political will, it must therefore be respected for its prior rights.
But society waxes and wanes in its acknowledgement of the duties and worth of familial relationships. We must exercise due vigilance that parental roles are not casually overlooked because of presumption, social indifference or philosophical agendas. In all human society, the protective and nurturing role of parents is primary.
There is an interchange of mutual rights and responsibilities in families with, understandably, the greater burden falling upon parents. Parents are considered as having the best interests of their children at heart, unless lamentable circumstances might prove otherwise. The decisions of parents therefore should not be casually usurped by the state in any manner.
All children are in need of care and protection due to a perceived inability to properly engage the world, and chronological age is generally, though not exclusively, seen as a barometer of this ability. Societies set somewhat arbitrary standards to serve as benchmarks for social approval of increasingly independent control being granted to children until in law and in socially approved custom they are deemed fully responsible. But parents are to make life choices for children until this time. The judgement as to what is best for the child should not therefore be left to a professional, health or otherwise, unless there is proof that the parents cannot make such a decision. It is their judgement which is central to how much a child may understand and to what degree a child should acquiesce in any treatment.
It is essential therefore that this act before us take these social realities into account in regard to who is to make judgements as to the ability and capacity of children to consent to any forms of treatment. Bill 19 must specifically state that age is to be taken into consideration as to capacity to give informed consent to medical procedures and consultations. Subsection 3(2) of the proposed act is an open-ended presumption of capacity on the part of health care practitioners without taking into account age.
As well, parents must have rights of notification as to what treatment measures are to be proposed for their dependent children. As you know, under Ontario law those are children under 16 who are unmarried. They must have these rights so as to properly exercise the rights and obligations to which they are entitled. Bill 19 needs to specifically set the age at 16 years of age below which a young person would have to have the consent of a parent or guardian to consent to medical treatment.
Second, artificial nutrition and hydration: The legislation under discussion would seem to have very little to say about the contentious and rather poorly understood issue of the provision of artificially supplied nutrition and hydration. However, subsection 2(1) when defining a personal assistance plan refers to personal assistance services to be provided to residents. Those services would include nutrition. Further, subsection 2(3) of the same section specifically speaks of treatments or courses of treatments that may be withheld or withdrawn. Nutrition and its necessary corollary, hydration, would seem to be included here.
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There is a fundamental problem with defining nutrition and hydration as treatment. Treatment is dependent upon the agreement of the patient, or her substitute decision-makers, and upon some anticipated benefit for the patient. Care, on the other hand, is a continuing function and must always be provided even if treatment is discontinued. The object and the goal of treatment is to cure. One may subject one's patient to unpleasant, painful or even in themselves life-threatening procedures provided that cure is the intended result. But with care the situation is radically different. Where cure is not possible, the priority becomes comfort, alleviation of symptoms and the production of a contented patient with a comfortable and relatively pain-free life.
Nutrition and hydration, food and water, do not alleviate conditions. Rather they are necessities of life, and so much so that their provision is symbolic of the very essence of altruism and charity. They should no more be withdrawn than should services of hygiene, palliative measures, human contact and spiritual sustenance. It is only in the final stages of the dying process that withdrawal of food and water should be allowed. In such extremity the patient is no longer able to assimilate these various elements and an undue burden would result.
Food and water are essential for all persons. It does not treat a particular condition and, overwhelmingly, its delivery system does not pose a great burden. Since food is never ambient -- that means you just don't happen to find it around -- but must be artificially manipulated in its preparation and its eating, it is the height of hubris to attempt to differentiate between the types of delivery systems. After all, we don't send people out to graze. Without feeding or water there is only one inevitable result -- death. Instead of allowing nature to take its course, we would thereby introduce another cause of that death and thereby responsibility for it.
In chronic care centres or hospitals with shortened staff, with less time for individual feeding, there has been a tendency to resort to tube feedings to assist nurses and not only patients. As well, in hospitals increasingly doctors are facing families with the choice of not feeding a loved dependant and presenting this as a treatment option while talking of a lowered quality of life.
It is here that Bill 19 gets into incredibly shaky grounds. Clause 57(2)(c) speaks of quality of life, and though it's a term well loved in ethical circles -- and believe me, I know -- it's one that is notoriously hard to define. What is proper quality of life? Quality of life used to be used with regard to the burden and benefit of treatments. Now, however, the ambiguity of the term leads inexorably to debate about the actual worth of the person undergoing the treatment.
We in the church hold to the sanctity of life regardless of disability and the inability of another person to make decisions about the quality of a person's life. One may evaluate the effectiveness and benefit or burden of care, but quality of life is too fraught with baggage to be used. It's a term consistently used in mercy killing debates and one which is like quicksilver in its refusal to be pinned down. In these types of discussions before us now, it is not the means that are the burden but the life itself.
The use of "quality of life" in clause 57(2)(c) is too loose and opens itself to serious abuse. It should therefore be struck so as to avoid the confusion of medical terms with philosophical terms which would open a legislative door to proponents of euthanasia. Such has already happened with cases such as Cruzan and Busalacchi in the United States or Bland in England where euthanasia proponents in ethical circles and on the bench spoke openly of the intended result of obtaining death for persons of a "poor quality of life," either by dehydration or direct killing.
Thus, in the same regard, definitions of treatment should categorically delete nutrition from their list. "Quality of life" should be stricken as a consideration for treatment plans and personal assistance services in this legislation due to its ambiguity, inappropriateness and potential for abuse.
Third, conscience rights for health care workers: We are all well aware that we live in a society that does not have a shared vision of what is ethically proper and reasonable. In our post-modern world, individuals routinely do not share a common moral vocabulary with which to discuss issues such as we are doing today, and this is a problem that I'm sure in all these weeks has been brought before you consistently. We merely have to look around to see that, especially in areas of life and medical care, people come from a wealth of different backgrounds and honestly disagree about fundamentals such as life and death, rights and responsibilities.
Such moral language disarray means that legislators such as yourselves must be definite in building into legislation such as this an overt protection for the ethical principles of health care practitioners. We can no longer routinely assume shared visions of what it means to be human, what a full and worthwhile life is, the worth of treatments and attitudes towards life and death and many other issues.
In our pluralistic society it is not only patients that have rights of conscience and choice of action that must be respected but also the health care practitioner. As a society, we must not fall into the trap that says that the seemingly pragmatic course is the best or properly ethical one. Too many of us today can leave these arenas where such decisions are made once we've debated them, but practitioners must carry out directives and are intimately involved in the lives and deaths of their patients. They cannot cavalierly remove themselves from responsibility in these decisions, nor would we wish them to do so.
Because of this, a health care practitioner must be able to have her principles and ethical standards protected in law. If not, they will be ridden roughshod over. Practitioners who wish to withdraw from a case or contest treatment or non-treatment decisions must be able to do so in formally approved and open ways, without suffering the consequences in professional dismissal, reproval or the insidiously effective discrimination on the job. Such subtle discrimination can be devastatingly effective at derailing careers.
Nurses particularly, but not exclusively, have validly complained that they are compelled to participate in treatment decisions with which they strongly disagree and which run contrary to honestly held moral principles. It is usually their duty to carry out such decisions and consequently their rights must be overtly delineated.
Health care is still trying to articulate the rights of conscience, and in a rapidly changing system that is under serious pressure. We must build in the overt legal right for individuals to act according to ethical principles without sanction. We need to promote moral values in our health care workers as our caregivers. Therefore, Bill 19 should have a section with clear and definite wording outlining the conscience rights of health care practitioners in regard to treatment decisions so as to allow for the constitutional rights of such workers to be protected and the decisions of conscience to be respected.
In conclusion, legislation such as Bill 19 will obviously have far-reaching repercussions; therefore, let us carefully evaluate it. Having outlined these points, I thank you for this opportunity to present them to you and to answer any questions that might arise from them.
Mrs Marion Boyd (London Centre): Thank you very much for your presentation. I'm very interested in the section you're talking about, the nutrition and hydration area, because that is an area of great disturbance. I too know of many cases where the withdrawal of food and water is proposed to families.
Father Lynch: When they are not really capable of making decisions, in many cases.
Mrs Boyd: Exactly, and do not have instructions necessarily from their loved one about what they would want at that point. I assume what you're saying is that if we were to be providing real palliative care measures -- easing pain and ensuring that people were moved enough to make sure the body sores didn't happen -- if supportive care for both the patient and the family were present at all times, the withdrawal of nutrition would not occur until it was very clear that the body wasn't assimilating food and water. Is that your suggestion?
Father Lynch: That would be a suggestion. It's a good idea to try to promote the extension of palliative care services in hospices throughout our province. In my own experience within hospitals I have seen that this is definitely the way to go to be able to foster a proper sense of care for both the caregiver and the receivers. However, often the decisions made about nutrition-hydration can begin even in ICU when patients are on the floors, especially for those who are elderly and facing, usually, strokes and mental debilitation. We have to include the basic concept that there would be a presumption in favour of at least beginning nutrition and hydration, however it's supplied.
Normally, these questions don't arise in hospices or good palliative care units because they're discussed beforehand and people have a chance to evaluate their possibilities and their choices.
Mrs Boyd: Even in home care, having just been through an experience like that, the old-fashioned sort of training many nurses have is that when the person gets to an almost semi-comatose situation, the suggestion becomes more and more pressure on family: "They don't feel like eating. Don't force them to eat," and so on. I have a sense that very often food isn't even offered. The presumption is, "They're having difficulty eating; therefore they don't want to eat," and I don't agree with that. I share your view that it has to be offered. The patient may refuse, but that's a different issue, isn't it?
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Father Lynch: I can sympathize with what you're saying, because my own father went through that for almost two years. We were lucky in that, having a big family, a number of whom were trained in health care, it meant people had the time and the inclination to work slowly and consistently to keep up his proper levels of nutrition. However, in most hospitals we can't blame nurses if they don't have a lot of time to coax people to eat or to take a great deal of time in spoonfeeding. This is a regular complaint on the part of the nurses, that they're feeling rushed in feeding these people. It can be a very laborious process, so we have to be extremely careful to recognize that there are times when that process has its own innate worth.
Mrs Boyd: What you say about family in terms of the importance of family, I certainly don't disagree with, although I think we might disagree with what the composition of that family might be.
Father Lynch: Actually, it's interesting you have "partners" in the act. But let's not get into that.
Mrs Boyd: One of the real issues we have in terms of families is that there is such a diversity in the composition of families, and one of the things this bill does is to set up a sort of hierarchy of family if the person doesn't have the power of attorney and has named someone else.
In many situations -- the obvious ones we will hear about are the AIDS kinds of situations where families may have said no, they're not interested in that person, until they get sick and then suddenly want to run that show.
Father Lynch: I've been in those situations, actually. I was a parish priest for seven years.
Mrs Boyd: It's very difficult, isn't it? When we talk about family, we have to be aware of the context of the family in those sorts of situations being a different kind of family than many of us have thought about.
Father Lynch: Being in a post-modern world means that people are going to be making all kinds of choices which aren't based on blood. This is why when people are together in terms of various choices or because of various forced circumstances, we have to be able to see that there is going to be, as you say, a hierarchy of people who will be relatively close to them. You see this in palliative care work when people get extremely close, much closer to their palliative care workers, in many cases, than a family from whom they may have been estranged.
I think those kinds of situations can be handled. I don't think you can ever entirely nail it down as to who the person is who is going to be giving the primary permission, shall we say, for treatment. But there's an openness here, an openness far more clearly laid out than in the previous set of bills, frankly, which caused great problems on the ground in hospitals.
Mr Ron Johnson (Brantford): Father Lynch, I have a question with respect to some of the comments you are making in here. I guess you're concerned over the term "quality of life." Can you reiterate exactly what the problem is with that? I'm looking at the legislation and seeing what it says and what the intent is. I just want to get a very clear understanding of your concern with respect to that phrase.
Father Lynch: In the early 1960s, the term "quality of life" was taken from an entirely religious context because it was first coined by an adviser to Pius XII. In those circumstances, it particularly meant the types of treatments and was applied to the benefits and burdens of treatments themselves. Starting in the early 1960s and coming to its fore in about the mid-1970s, "quality of life" started to be applied not to the treatment but to the individuals themselves. The problem with that is that it's very difficult to evaluate the quality of another persons's life.
Two of my foster sisters are mentally handicapped, and many people would've said they had a very low quality of life because they were not able to attain any of the socially approved roles in society. But having lived with them, I thought they had a very high quality of life, and I find that when I've gotten sick and people may think I have a poor quality of life, I don't think I'm doing too badly.
One can evaluate treatments and the effectiveness of treatments, but it's extremely difficult to imagine that one could evaluate another person's quality of life. Having dealt with people who are dying and seeing them fight to the end, or others who give up almost when the prognosis is first presented to them, it's almost impossible to enter into another person's mindset there.
I think you should be very careful trying to put this into legislation, because we've seen, especially in the United States, that "quality of life" has been used to very quickly withdraw various treatments or various what we would consider terms of care.
Mr Ron Johnson: I understand exactly what you're saying and I understand your concern. Of course the intent in the legislation -- and maybe we need to look at rewording that. It's that in deciding what the resident's best interests are, the person -- the substitute decision-maker -- "shall take into consideration," and one of the things to take into consideration is whether the personal assistance services described in the personal assistance plan are likely to improve the quality of the resident's life. I guess what you're saying is that the subjectivity of that phrase could lead to a number of different avenues.
But when you look at the responsibility of the practitioner, it's clear to me -- and maybe we need to look at that again -- that they wouldn't be doing anything -- you talk about euthanasia -- that would contravene any federal statutes, and at the same time, everything they would be doing would be in the best interests of the patient, I would hope.
Father Lynch: "Best interests" is a very difficult thing to figure out as well, isn't it? You're going to be spending weeks on that. In this regard, the difficulty with quality of life is that things may be presumed, but until they're spelled out, you've got serious problems. I would refer you to Edward Kaiserlink's work on the quality of life and on the whole area of the protection of life in the reworking of our federal laws. Kaiserlink was very clear that we have to be extremely careful with the quality of life because of how it was being used in various constituencies in the United States. It has been brought up again and again, perhaps misinterpreted, but it's been brought up again and again in many court cases, for instance in Arizona, Oklahoma and especially New Jersey, which seems to make a special hobby of using those provisions in some of its laws.
Mr David Tilson (Dufferin-Peel): Obviously, the government appreciates and supports your position with respect to strengthening the family unit, however that is defined: parents looking after children, children looking after parents and so on, and the extension of that to others, whether it be in-laws or others.
The question I have is with respect to volunteer advocacy. Can you see a role for churches or synagogues or temples, assuming they take the appropriate training processes, in the future participating in volunteer advocacy programs?
Father Lynch: Effectively, speaking as a Catholic, we see our church as a community gathered of individuals and families, so it would be natural for us to take that kind of role, to speak out for individuals who can't speak for themselves. That's been part and parcel of what we would consider to be the option for the poor. We would see our distinct role as being able to speak out for people, hopefully on a volunteer level.
Mr Tilson: But can you see representatives from your church, for example, participating in training programs to qualify as advocates?
Father Lynch: Oh, yes. I think we've done it in almost every other area of social action in society.
Mr Tilson: Yes, you have.
Mrs Elinor Caplan (Oriole): Thank you for a very thoughtful presentation. You raise a number of issues that have plagued governments and societies for quite a long time.
You mention at the beginning the consultation that took place. My question is, were you consulted as part of the development of this legislation?
Father Lynch: No, I wasn't, but as I responded to Marion Boyd's question, I think part of the reason was that I've been out of it with familial responsibilities until a few months ago. But speaking to a large number of physicians and consulting with other ethicists, especially in the Toronto area, I feel I've had an input, and indeed we've had some input. Whether input is taken into account is a different matter.
Mrs Caplan: I believe it's very important to talk to the people who have either a front-line understanding or experience with the existing legislation and some suggestions for changes to the future. I've been trying to find out from the ministers what kind of consultation, who was consulted.
Father Lynch: Yes, as chaplain of the Catholic doctors' guild in Toronto, we represent several hundred doctors. A number of them, especially those in the ethical areas, have been consulted; there have been meetings, I know, from the Ministry of Health with internists and physicians and other professional ethicists as well.
Mrs Caplan: That's helpful, because they have not been forthcoming with who all was consulted, so I've been asking that question. I'm pleased to hear that. My concern was that there was inadequate consultation before some of the changes were made. So that's very helpful. I'll continue to ask that question because I think there were a number of organizations who traditionally have been consulted that didn't have a chance prior to the legislation. If we're here to make good changes to a law that many of us thought was flawed, then I think that's an important part of law development.
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Father Lynch: I could only add, as a corollary to that, that I don't believe there's any great need to rush this kind of legislation through. It's better, like a good stew, eaten after some reflection. I think the more consultation the better in this area, because it's going to affect pretty well each and every one of us.
Mr David Ramsay (Timiskaming): A good analogy.
Mrs Caplan: My colleague Mr Ramsay says the stew is a good analogy. I'm not sure I agree.
The other questions I have relate to a part of the bill that you did not refer to and it's something I have concern about. Under this new law they've taken away any obligation for rights advice outside of the Mental Health Act and in the provincial psychiatric hospital setting under the auspices of the PPAO, or the Psychiatric Patient Advocate Office. They've also removed any obligation from people who would do an evaluation of capacity, whether they are doctors or anyone else under the Regulated Health Professions Act who would be able to make that kind of a determination before treatment. There's no requirement to notify the individual that they've been found incapable, there's no requirement to let them know that someone else is going to be making the decision for them, and there's no requirement under the law to let them know of their right to make an application to an appeal board. I wondered whether you've had a chance to think about that.
Father Lynch: I think we have to be extremely careful for people, and many of them are on the street. I trained as a psychiatric chaplain, so this is sort of close to my heart. We have to be extremely careful that people have a constant access to be able to have their rights either maintained or regained. In this regard, as far as people are capable of receiving that information and being able to act upon that information, it's a moral obligation to be able to give it to them. The process can be worked out, but there has to be some kind of process there for them to be able to maintain effectively that which is central to human dignity.
Mrs Caplan: I agree completely with the last statement, and the concern here is it's not black and white.
Father Lynch: I can see why it was left out because the problem was in its working it was very difficult to do, especially in emergency situations.
Mrs Caplan: I agree, and there is an emergency provision here that I think is appropriate so that in an emergency situation nothing is a barrier to treatment. However, we know that capacity isn't black and white, that there are people who move in and out of the ability to understand and comprehend all the time. It's a question of understanding that this bill is about mostly that grey stew in the middle; perhaps that's the best way to describe it.
I appreciate your comments. The other issues you raise are things that we'll be thinking about as this legislation progresses.
The Chair: Thank you, Father Lynch.
Mrs Caplan: Is that it? You're right; you're absolutely right.
COLLEGE OF NURSES OF ONTARIO
The Chair: The College of Nurses of Ontario. Good morning. Anyone that will take part in the presentation, I would request that they be identified for the purposes of the Hansard record.
Ms Anne Coghlan: Good morning. I'm Anne Coghlan, president of the council of the College of Nurses of Ontario. With me today are Margaret Risk, executive director of the college, and Elisabeth Scarff, director of policy.
The College of Nurses of Ontario is the regulatory body for approximately 150,000 registered nurses and registered practical nurses in Ontario. Our mission is to regulate nursing in the public interest. The college's standards of practice identify client choice, including the right to information necessary to make choices and to consent to or refuse care, as one of the ethical values most relevant to providing nursing care in Ontario. We are pleased, therefore, to have this opportunity to respond to Bill 19, and most of our comments focus on the proposed Health Care Consent Act.
The timing of the introduction of this bill and our presentation today has meant that the council of the College of Nurses has not had an opportunity to consider either the bill or the college's response. Our full written response will be forwarded to the committee following the council meeting at the end of this week.
Our comments today, however, are steered by the principles, values and concerns which the college has articulated throughout the development and implementation of the current consent, substitute decisions and advocacy legislation, both directly and through our participation in the ad hoc coalition, which will be making a separate presentation later in the hearings.
Briefly, our comments today will focus on: our commitment to maintaining the integrity of the right of clients to make informed and voluntary decisions, balanced with our equal commitment to facilitate the right of clients to receive safe, quality health care in a timely and effective manner, and our concern that overly complex and bureaucratic requirements become undue barriers to these rights; the need for a common understanding among health care practitioners about the intent of the legislation; and the need to address the practical difficulties facing practitioners in interpreting and complying with the legislation in the diverse and complex situations which arise in all health care settings.
We commend the efforts which have been made to simplify the provisions to the Consent to Treatment Act. The form and language of the proposed Health Care Consent Act is much easier to understand. As well, many of our previous concerns have been addressed.
We are pleased to see the amendments to provisions which are often causing unnecessary and artificial delays in the provision of treatment, including the changes to the definition of emergency treatment, the simplified provisions around the definition of informed consent and the elimination of the seven-day wait for notice of an appeal of a finding of incapacity to the Consent and Capacity Review Board.
Other features of the Health Care Consent Act which we support include the ability of the Consent and Capacity Review Board to address situations of substitute decision-makers who do not act in the best interests of the incapable person; the explicit clarification that consent to plans of treatment can include refusals and withdrawal of treatment; and the removal of the purely artificial provision that incapacity to make a treatment decision included incapacity to make a decision about admission to a long-term-care facility.
We also support the removal of rights advice as set out in the Consent to Treatment Act. These rights advice provisions are complex and rigid. We believe they compromise safe, effective and timely care of incapable persons.
We want to make it clear, however, that the College of Nurses does not believe there is no need for clients to be advised of their rights. We are committed to the principle that client rights and decisions about treatment and personal services must be respected. This needs to be done, however, without jeopardizing the quality of health care provided to clients.
Being accountable to act as a client advocate is a fundamental principle of nursing and the College of Nurses' standards of practice. Informing clients of their rights, whether under the Consent to Treatment Act or the Health Care Consent Act, is part of this advocacy responsibility. The College of Nurses has always expected and will continue to expect that registered nurses and registered practical nurses will assist the client to understand relevant information and to protect and promote client rights.
In view of the removal of the Consent to Treatment Act rights advice system, the College of Nurses will be issuing practice guidelines reiterating the professional accountability of our members to be client advocates and providing guidance on what this can mean when there has been a determination of incapacity to make treatment or care decisions. The guidelines will include the expectation that an RN or an RPN who makes a determination of incapacity shall inform the client that a substitute decision-maker will be asked to make the treatment, admission or personal care decision on the client's behalf. If there is an indication that the client is uncomfortable with this intent, we shall also expect our member to advise the client of his or her right to appeal.
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Despite our overall support for the Health Care Consent Act, we do have some recommendations. We would like to comment today on four particular issues relating to this act: obtaining consent to excluded treatments: the terminology of "personal assistance service"; limiting access to the substitute decision-maker hierarchy on the basis of where a personal assistant service is provided, and whether the consent is required for a plan of personal assistance services; and the need for clarification that consent is required for activities of daily living. As well, we intend to comment on an amendment to the Substitute Decisions Act giving the authority to the minister to pass regulations requiring health practitioners to release personal information to an applicant for guardianship. Finally, we have a recommendation relating to government's plans around the implementation of Bill 19.
Turning first to the issue of obtaining consent to excluded treatments, as the act itself indicates, all common-law requirements for consent continue to apply to acts or treatments which the Health Care Consent Act excludes from the act's definition of "treatment." The college of nurses has consistently emphasized to our members that nurses should not be providing treatment without consent. This applies whether the client is capable or incapable and whether the treatment is included or excluded from the definition in the act.
We are concerned that in the case of an excluded treatment, the practitioner cannot rely on the list of substitute decision-makers if the person is not capable of giving consent. One of the original purposes of the consent legislation was to give practitioners confidence that there was some legal authority allowing them to turn to family members when consent is needed for a treatment of an incapable person. The rights of incapable clients to have their substitute decision-maker consent on their behalf needs to be retained, whether the consent is required under the Health Care Consent Act, under the common law or in accordance with a practitioner's professional standards of practice.
As well, confusion and uncertainty among health practitioners about who can give consent to treatment when the client is not capable of giving consent will continue to be a barrier to timely and effective care. A consistent and clear authority who can give consent to treatment in all circumstances is required.
We recommend that the substitute decision-maker hierarchy be extended to apply to all treatment whether or not it has been excluded from the definition in the act.
The second issue we would like to discuss today is the introduction of the terminology of "personal assistance service." We are unclear why there is a need to introduce new terminology to describe activities of routine daily living when such activities are widely described in health care settings as activities of daily living. Introducing new terminology to replace a commonly understood health care term seems arbitrary and unnecessary. It is likely to contribute to confusion and ambiguity among practitioners and care providers.
We recommend that the Health Care Consent Act reference to "personal assistance service" be replaced with the term "activities of daily living."
Our third topic today concerns part IV of the Health Care Consent Act and the concept of limiting access to the substitute decisions hierarchy to care facilities as these are defined in the act. We support the concept of allowing providers to turn to the substitute decision hierarchy when a person is not capable of giving consent to assistance with an activity of daily living. We have concerns, however, with the limitation to care facilities. There is no consistency in the settings where personal care services are performed. Services related to activities of daily living are provided in all settings, including unregulated retirement homes, community facilities, the client's own home and hospitals.
Limiting access to the substitute decision hierarchy on the basis of the type of facility where a service is provided is inconsistent with the underlying theme of the first stated purpose of the Health Care Consent Act found in clause 1(a), that is, rules on consent to treatment should be applied consistently in all settings. The College of Nurses has consistently taken the position that consent requirements should not vary on the basis of location.
In addition, part IV only applies to a plan of personal assistance services. If the service is not in a plan, the practitioner is left in the same position as with treatments which are excluded from the act. Unless there is a power of attorney, guardian or representative, the only recourse is the public guardian and trustee. It is our understanding, however, that the public guardian and trustee is extremely reluctant to become involved in personal assistance matters. The practitioner is again caught in a catch-22: provide the service with no consent or leave the client without the benefit of the service. Certainly, if a substitute cannot be found and the client is in discomfort or is at risk of discomfort or harm, then we would expect the service to be provided even without consent, but in the absence of such circumstances, consent is needed.
The College of Nurses recommends that persons providing services related to activities of daily living be able to refer to the substitute hierarchy, regardless of the place where the service is being provided and regardless of whether or not it is a plan for activities of daily living.
Additionally, we propose that in order to provide clarity, the act include a section that if the substitute cannot be readily located, and a client may incur discomfort or future risk without the service, it may be provided without consent.
Our fourth concern is whether the proposed Health Care Consent Act is precluding the common law on consent for activities of daily living. As we noted earlier, subsection 7(2) of the act provides that nothing in the act affects the application of the common law on consent to treatment which is not captured by the definition in the act. The absence of a parallel provision for activities of daily living may infer that the common law is not expected to apply to activities of daily living.
The College of Nurses' expectation that our members respect clients and obtain consent for acts or services performed for a client does not differentiate between whether the act is a treatment or an activity of daily living. In order to avoid ambiguity, we recommend that the act be amended to explicitly provide that it does not affect the application of the common law on consent to activities of daily living.
Our fifth concern relates to a proposed amendment to the Substitute Decisions Act rather than the Health Care Consent Act. Bill 19 provides authority for a regulation that will require a health care practitioner regulated by the Regulated Health Professions Act, among others, to disclose personal information to a person applying to be a guardian if the information is relevant to the application.
The College of Nurses is concerned that this provision needs more explicit limits on when this requirement can be imposed. Maintaining confidentiality about personal information which comes to the attention of one of our members during the course of providing health care is another one of the basic ethical principles of our standards of practice.
In the case of an application for guardianship, there is no certainty that the person may obtain the guardianship or even that the person has not applied for the guardianship in order to obtain the personal information. We recommend that if practitioners are authorized to release personal information to an applicant for guardianship, the Substitute Decisions Act clearly prescribe safeguards to prevent undue release of personal information.
In closing, we would like to comment on the need for the government to consider the implementation of this new legislation. Only nine months have elapsed since the Consent to Treatment Act was proclaimed. We believe that uncertainty is going to result among practitioners and the public about when consent is required, what the nature of the required consent is and who can give it if a person is not capable.
The College of Nurses allocated significant effort and resources to design and deliver education programs for 150,000 members across the province on the Consent to Treatment Act. We collaborated extensively with the members of the ad hoc coalition to ensure that the messages which we all communicated to our members or stakeholders were consistent, and we did this in a time frame that was extremely short. Despite our best efforts, delays and unnecessary confusion occurred in an already strained health delivery system.
Given the short time period between the introduction of two different consent regimes, combined with the stress associated with the budget cuts, hospital mergers and staff layoffs occurring throughout the health care system, it can be expected that ongoing confusion or uncertainty on the part of practitioners and the public regarding the application of the new provisions will occur for some time.
We urge the government to defer proclamation of any new legislation pending discussions with stakeholders to allow time to educate health care practitioners to facilitate a smooth transition and to provide the resources necessary to undertake a province-wide education program on the new legislation for practitioners and the public.
That concludes our comments today. We'd be pleased to respond to any questions you may have.
The Chair: We have approximately four minutes for each caucus. Mr Johnson.
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Mr Ron Johnson: I want to thank you for your thoughts on the matter and your presentation. I'm grappling with a couple of issues here and a lot of it is sort of the disclosure issue that you talked about briefly in your statement. You said here, "The CNO does not believe there is no need for clients to be advised of their rights...We are committed to the principle that client rights and decisions about treatment and personal services must be respected. This needs to be done, however, without jeopardizing the quality of health care provided to clients."
Is that to say that in some situations, obviously not in a blanket situation, it can happen where the advising of these rights could in fact jeopardize the potential health or wellbeing of the patient? Could you explain that briefly?
Ms Coghlan: I could give an example, perhaps. If you have a patient who is already confused or agitated, simply using the term "incapable" first of all may well not be clearly understood, and secondly, may contribute to greater agitation and confusion.
What a nurse might say in place of that is: "Mrs Jones, we need to make some decisions about your care. Your daughter has in the past made those decisions on your behalf. Your daughter's coming in this afternoon and we will have a discussion around future decisions that need to be made with regard to your care." If Mrs Jones indicates that she now wants her son to be making those decisions, then obviously the nurses had an indication that the client is not comfortable with the hierarchy of substitute decider. If Mrs Jones indicates that there is no problem with her daughter coming -- the nurse has checked out the client's understanding of the use of the substitute decider but she has not explicitly said, "Mrs Jones, you are not capable of making this decision."
The Chair: Mr Parker. We have approximately one minute.
Mr John L. Parker (York East): Frankly, my question was on the same point. Let me get right to it. Right now the act is silent on the point that we just discussed. You have indicated how the profession deals with matters of that sort. Would you have any objection to an amendment to the legislation to include language of the sort that you just described?
Ms Coghlan: Yes. We feel that it is covered in our professional standards, that it is a professional accountability of every member of the College of Nurses. Including it in the act resorts to micro-regulation and an infringement on the self-regulation of regulated health professions and quite frankly does not guarantee protection of the public. We currently are waiting for regulations that have been with government for a long time. There would be an immediate accountability of our members because it is a professional expectation as opposed to waiting for a regulation.
Mr Tilson: The issue of confidentiality that you asked with respect to I think section 60 of the bill -- I guess I'd like to just comment. My interpretation of it is -- this is the section that authorizes a member of a college to release information -- the section doesn't require the release of information; it simply authorizes it. The nurse or member of another college can choose not to release that information.
I think the intent of this section is that there may be situations where there's no one else to provide information, particularly information with respect to applications of determining one's competency or protecting the individual. But it's still at the discretion of the nurse or health care provider not to release it. It simply authorizes or assists the health care provider to provide that information simply to protect the individual. That is my interpretation of what the section means. It's not mandating you to release it; it simply authorizes you to.
Ms Elisabeth Scarff: We recognize that but I think the issue is, should it be the practitioner's responsibility to assess the bona fides, and whether this is an appropriate situation in which to release the information, because the practitioner has no knowledge of the circumstances around the application for guardianship.
Mr Tilson: The difficulty is that there may be situations where --
The Chair: Excuse me, Mr Tilson. I'm sorry. Your time is up. Mr Ramsay.
Mr Ramsay: In a second I'll follow up on that and maybe we can continue on that line. I did notice on the first page of your presentation you mentioned that the timing of the introduction of the bill and your presentation today has meant that you couldn't do a full response. I appreciate that may have a lot to do with the timing of your council meetings that you have as a college, but I was wondering if you were consulted while this bill was being drafted.
Ms Coghlan: We have had opportunities to provide input into the drafting of the legislation, and as you know, the college is also a participant with the ad hoc coalition.
Mr Ramsay: Good. Following up Mr Tilson's line of questioning I wanted to ask you, when you talked about the release of personal information in regard to an application for guardianship -- I know the privacy commissioner has also flagged this and is going to be looking more closely into this -- could you give us some ideas of the types of safeguards you'd like to see there that you feel your profession would be comfortable with.
Ms Coghlan: Our concern is around putting the onus on the professional at all and the impact that has on the health care provider-client relationship, which is based on trust, and confidentiality is a key ethical principle.
Ms Scarff: One suggestion, and we haven't gone into detail about this because we didn't think it was our role: For instance, if there is a preliminary review of the application for guardianship and the court has determined that there is a need for information, then there can be authorization from the court indicating that this is a necessary part of the application. But there would have been that judicial review, which could be done in a preliminary manner through a motion, not through a complicated exercise.
Mrs Caplan: I appreciate your view on whether or not there's a requirement to ensure that people know their rights. I've expressed this before I'd like you to think about the position: This legislation removes all rights advisors, the kind of outside, autonomous, non-professional -- when I say "professional" I'm talking now about those who would be evaluators or assessors of capacity. So there's no one coming in, with the exception of the Psychiatric Patient Advocate Office, where there are rights advisors. No one's coming in to advise the individual.
There is nothing in the Regulated Health Professions Act that would require consistency among the professions which have the ability to either be an evaluator or an assessor. We heard yesterday from the College of Physicians and Surgeons that they would not begin a discipline proceeding if someone had not advised a patient of their rights and also even advised them that they had been deemed incompetent before they began treatment.
This act does not require persons to be notified when they've been found incompetent, nor does it require any advising of the individuals of their right to appeal.
Do you believe it would be valuable to have some consistency among the professions, perhaps under the Regulated Health Professions Act, so that other professional bodies would be obliged to do what you've done as far as setting up the standards and guidelines of what would be professional misconduct if a person was not informed of his rights? By the way, I see this as a minimal obligation of providers and I'm asking you, do you think it's professional misconduct if a professional does not inform a person that he's been found incompetent and has not told him of his right to appeal to the hearing?
Ms Coghlan: It's professional misconduct if there's been a failure to maintain standards, and our standards are as we've indicated in our submission: that there is an obligation to clearly indicate to an individual that a substitute decider will be used to obtain consent and to advise an individual who objects to the use of a substitute decider of his right to appeal.
Mrs Caplan: But that's not consistent in all professions, is it?
Ms Coghlan: I can only speak for the College of Nurses. What we're indicating is that our standards and the expectation of our members will indicate very clearly the responsibility -- there already is that responsibility now; it's just reinforcing it.
Mrs Caplan: Do you think there should be consistency? If there's no obligation, if different professions feel differently than you do, don't you think there's an obligation among lawmakers to at least ensure the consistency in the development of those guidelines by the professional colleges?
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Ms Coghlan: I think that every professional college has an obligation around consent. I don't think that microregulation of this by government is the answer.
Mrs Caplan: I'm not proposing microregulation. What I'm proposing is a statement of the obligation. That's not microregulation. All I'm proposing is that the obligation be seen as serious and that through a statement either in this legislation or a companion in the RHPA it just says it's an obligation, and it's up to you as to what your guidelines are and how you do it, as far as the micromanagement of it, because I believe in self-governance.
But there are some court cases that say that unless by statute the government has said that this is a requirement, when tested in the courts, the courts have not been able to uphold that decision. There is one court case unrelated to consent, but it's a concern that I have because not all of the colleges treat the -- not for informed consent, but the obligation of informing someone when they've been found incapable, informing them of their right to appeal -- not all the colleges feel as you do.
Ms Margaret Risk: Can I just respond very briefly to Mrs Caplan? I can understand your concern and perhaps this is an issue that the federation needs to look at in terms of consistency. What we're seeing is increasing obligations in other legislation that begin to infringe on self-regulation. Sexual abuse was one -- not to debate that particularly -- but this is another, and then there will be another and another. Certainly some of our concern is that the principles of self-regulation begin to be eroded and that we can deal with this in professional guidelines.
Mr Rosario Marchese (Fort York): I wanted to make some statements and my colleague will have a question. I appreciated the presentation very much and wanted to comment on two aspects of your presentation.
One has to do with what was just talked about by Mrs Caplan with respect to your ideas around the fact that the rights notification in the past may have been too onerous but that you still respect that the individual should be notified and that you provide guidelines for that. I think that's very good. Saying that you are accountable to act as a client advocate as a fundamental principle of nursing, as a standard practice, in my view is a very good thing to do, and being proactive as opposed to waiting for governments to tell you to do something is very, very good.
I find that these guidelines you propose are guidelines that should be generally applied. I disagree with you in terms of the comment you were making earlier. I think we need to have general guidelines that are in regulation, if not in the act, with respect to rights notification. I'm one who believes that people should know what their rights are and they should be notified of those.
The final comment has to do with the timing of proclamation, and I agree with what you say here. I think many governments make the mistake of passing laws, proclaiming them very quickly usually, and give very little time for people to be able to make the adjustment. This government will not be the first to do this. All of us have done this, and as a general rule, this is a problem. We need to be able to give people time to be able to understand what laws have just been passed in order for people to properly apply and respect those laws, so I think what you suggested here is a very useful thing.
Mrs Boyd: My question is around your section on personal care and activities of daily living. We just heard the previous speaker talk about the issue of nourishment and hydration. I wonder if you think that fits under treatment or the activities of daily living and how it would all fit into this whole issue of the continuum of care, because I think you made the point that there is no very clear line between what is a nursing function or a health care function and what is an activity of daily living. I think that's a real concern. Could you give me some examples of what you mean by activities of daily living so that we have an idea of whether your recommendation really needs to have some strength in the legislation?
Ms Coghlan: Activities of daily living may be bathing, feeding, ambulating, assisting someone to walk, toileting. They also may be things that in another situation would be considered treatment. Someone with an acute urinary tract infection requires catheterization perhaps as a treatment, but someone may also require catheterization as an activity of daily living, something that is a routine.
Mrs Boyd: Like a spina bifida situation or something.
Ms Coghlan: That's right.
Mrs Boyd: So basically you would want to see the whole continuum of support of the individual in a health care situation be considered as a continuum rather than separated out.
Ms Coghlan: That's right, and the same obligation to obtain consent applies to both situations.
The Chair: Thank you very much for your presentation. I understand that our next person on the agenda is not available at this moment, so we will proceed, with your indulgence, to Edith Hughes.
EDITH HUGHES
The Chair: I understand that Edith is blind and will be making her presentation by tape.
Ms Edith Hughes: Shall I introduce myself or have you done that?
The Chair: Welcome, Edith. My name is Gerry Martiniuk, I'm the Chairman of this committee, and we have allocated one-half hour to your presentation. Will you be available to answer questions?
Ms Hughes: Yes.
The Chair: Good. You can proceed then.
Ms Hughes: Will they turn on the tape, please.
The Chair: Yes, they're turning it on for us right now.
Ms Hughes: I understand advocacy to be made necessary from a loss of citizenship, and I come at the problem from the other side. Persons become vulnerable when they do not receive medical care which they require and as a result they lose their rights of citizenship.
I remind the committee that no Canadian at the present time has the right to medical care in spite of great need and in spite of numerous available appropriate resources. The college has stated in writing that if there's any tension or discomfort then a doctor has sufficient grounds to refuse to see a patient. In the event that a doctor refuses to see an individual whom he has seen or for whom he has made an appointment and then cancelled, the college will intervene, but if he genuinely does not wish to see that person, the college will not persist and will provide only a referral telephone service. One is therefore sent shopping against one's wishes into a field that can become more and more narrow.
A physician can refuse to see a person for a number of reasons: (1) he doesn't know enough about the presenting problems and he's not willing to troubleshoot; (2) existing illness, disease or disability can be reasonably attributed to prior or present medical care, that is to say, the problem is iatrogenic; (3) the physician fears real or imagined legal proceedings.
In other businesses liability is seen as a fact of doing business, particularly if one has a monopoly. Consider that Ford is expected to know all about and take all responsibility for all of its products. In medicine the refusal to see a patient for reasons of professional liability is not seen as a conflict of interest but as a right of practice.
The medical system in Canada is a discretionary monopoly. It is a monopoly because a physician is given the right to be the only one individual available to assist; discretionary because he has no obligation to do so. The Advocacy Act, to the degree that it addresses a loss of citizenship due to medical negligence or disinterest, can be considered in this case an operating cost of doing health care as we do it in Canada, and thus belongs rightly in the Ministry of Health.
I propose that the committee consider that if we are to repeal Bill 74, we can do so for this group of vulnerable persons only if we either (1) insist on an absolute medical monopoly, that is to say, medicine must be all things to all persons at all times; or (2) insist on a health care system which relieves medicine of its monopolies in all or some areas of clinical practice and research, that is to say, we make health care competitive at its most fundamental level, at the level of documentation and diagnosis and interpretation of an individual's presenting problems, and any ongoing referral be undertaken by persons qualified in sciences other than medicine, that is to say, we remove the provision for doctors' orders.
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I therefore propose that troublesome physician behaviour is not limited to personality, attitudes or interpersonal factors. That is to say, the need for the Advocacy Act will not be diminished if disengaging physicians become more urbane, listen better, are more approachable or more patient.
It should be noted, though, that this present situation would be improved if medicine and its practitioners could admit they did not know, for there is the added problem that medicine tends to employ psychiatric labels and psychiatric actions or deceptive and casual experimentation on those persons who continue to report and seek assistance for presenting problems which the attending physician deems to be false or trivial.
I propose to provide for the committee the example of vision care, where access to care can be limited by virtue of the usual practice of medicine itself. The unwieldy effects of vision losses, which can be complex, complete and sudden, in growing numbers of persons have a particular devastating effect on citizenship if left wilfully unattended by members of the college.
First, however, I would like to say that in today's medical environment, the Advocacy Act, if left to stand, works to the disadvantage of Canadians who are disabled and unable to obtain safe, adequate and timely care. The provisions of escort, access to medical records and rights advice make physicians uncomfortable and further complicate the problem of lack of care for no good reason.
The remedies for physician misconduct are the college and, failing, that the Human Rights Commission or civil malpractice suits. The above provisions of the Advocacy Act dovetail neatly with a move to legal actions of that sort.
The reality of disability is that one wishes to know if a medical person can assist and, if not, who can? One wishes for safe, appropriate and timely medical care in order to get on with one's life. One does not wish to be swallowed up by the system at such an inopportune moment.
Access to medical records, escort, rights advice, in attempting to get something done, shifts the reality of disability from the action of medicine itself to those aspects of medical culture which are highly politicized, legalistic and defensive. With empowerment of the individual comes enforcement, but one does not need a copy of the medical records of a visit to know whether or not something was done.
What one does learn from those records is how much was understood by the physician of what was said by the patient, how the physician portrays the visit, any derogatory comments and how he justifies non-intervention in the face of need, sometimes through the vehicle of those things which should have been done in an ideal world, such as referrals which did not occur and prescriptions which were not adequate or not completed at all but show up on a medical record.
Legal proceedings or hearings are a cumbersome David and Goliath affair in a legal forum, where an individual who cannot see and has been used to being a citizen does not find satisfaction or purpose in taking a physician who has not allowed you to use a tape recorder in an eye clinic to a Human Rights Commission five years later. If such actions are attempted and should fail, then one is left even further from health care.
I ask the commission therefore to recognize that the present medical system can be corrupt at any point. Anyone can fall out of the system. In that sense, in the search for medical care when it is needed, vulnerability is universal.
I suggest that the committee consider additions to prevent further withdrawal of services and their consequences for those persons who employ this or any other Advocacy Act in order to obtain needed medical care. It's necessary to recognize that we have a rather fragile infrastructure when it comes to accountability and conflict of interest within the medical system and it feels often that patient activism is the main feature. We lack any science of iatrogenics, any science of games theory or management theory in the present health system. Sometimes it feels like the deck is stacked. I just mentioned the college. There is no complainant or respondent at the hearings and there is therefore no cross-examination. There is no dealing at the college with fundamental theoretical issues, which we'll speak about in a minute. Unusual medical practice is not usually thought to be a denial of human rights.
To the person who cannot receive medical care for no good reason, in some ways the present Advocacy Act is a loss of political will, and a continuation of a reconstructed Advocacy Act without provisions to protect those required to intervene in order to make their needs known while they are disabled without medical care is an act of political cowardice.
As Canadians, we inherit a medical insurance plan put in place by the government in lieu of devising a health care system, now not willing to be a third-party payer. The act of advocacy feels like an attempt to absolve the government of the need to devise a health care program. The act feels like a piecemeal solution in an implicit bottom of accountability in a system continuing with top-up resources. Those at the bottom are expected to work for free and those at the top have resource preference. It is striking how physicians, bedecked with rewards, continue to hold a place of independent authority when discussions of the health care system take hold.
I'd like now to turn to the issue of vision care and I'll refer you to the two pieces of paper which we've handed out, the ICD9-CM table listing of blindness and table 1, which lists distance equivalents for dioptre correction as well as other figures which are self-explanatory.
I consider in vision care that the successes of medical care relate directly to the failures or the places at which advocacy might be required on the ground. In particular, I'm speaking of ophthalmology. When I speak of a success in ophthalmology, I speak about glasses, and it's sometimes referred to as a magic bullet par excellence. There are some pros, there are some advantages, to glasses. They are numbered and they're objective, and you can see from table 1 that the distance equivalents are very specific. They don't change and they're determined by a Snellen chart which was developed in the 1860s and has a tradition behind it which is assumed to be a valid measure of vision. So in a sense, when you put on those glasses, it solves your problem, it goes away and you can see. With glasses, any person can provide treatment, and many people provide treatment. Glasses are readily commercially available, they're easily removed, they're not invasive usually and they're not considered to have any ill effects.
For a third-party payer like the government, glasses give the government a sense that they know what's been done and for the physician it permits him to determine his time as a businessman and as a clinician efficiently. He can determine how long it's going to take to see somebody. He has a very set procedure for glasses. It's a very easy way to compare one visit to the other. It's a very easy way to learn one patient against the other. So as long as he's prescribing many glasses, he becomes very astute at doing that very thing and he becomes a very reliable prescriber.
So what are the problems? There are a number of quite serious cons that I would like to suggest. In a sense, the tail can begin to wag the dog. If you have something that works as well as glasses, what you can do is you can begin to structure your diagnosis around a rather more convenient diagnosis of myopia. You could tend to overlook other signs or, in the extreme case, you could reject signs which don't fit in with a simple prescription. Or if you prescribe a pair of glasses and someone says they're having difficulty with them, you can say to them. "Well, get used to them and it'll be all right."
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Most people are familiar that when you go to an ophthalmology clinic, which is usually what is meant by an eye clinic in a hospital, you will get acuity testing rather than a vision assessment in general and, more likely than not, you will be given a prescription for glasses. That prescription is given in a darkened room usually and it's given using an anti-cholinergic at least once in your life, which is usually based on the drug belladonna or atropine, which in fact paralyzes the accommodation of your eye. It's a drug which prevents the transmission of nerve impulse into the muscles around the eye and so the eye is in fact paralyzed for the time in which it is being prescribed.
There are a couple of dangers with such a structured method or such convenience. One is the tendency of clinicians to do just that. So, for example, a neuro-ophthalmologist has recently said, "Look, I can give you a pair of glasses or I can tell you if you have a brain tumour." Now, I'm not sure that's what everybody from outside would think a neuro-ophthalmologist would do and only do, but that's his impression of what he does and he has no need to extend it, even though there is nobody else who does other things in the foreseeable future. So there is a sense here of the patient fitting into what is provided rather than being observed for what is actually wrong.
That can happen even in the case when the vision signs are absolutely pronounced and remarkable, even by the physician's own measure. They won't show up on the medical record and they will generally be ignored, things like multiple images or severe diplopia or going out of focus when you look at a Snellen chart or, for example, being able to read at variable levels or being able to, once the light comes on, see much better than with the light off or in fact being able to see with the light off.
With glasses, you are at one reading or another. You don't shift around. For example, let's take --10: You don't shift from 20/25,000 to 20/200. It's considered impossible for you to have that kind of range.
I think sometimes too during the assessment there is a tendency to determine whether you could do something and not how you did it. For example, if two people were asked to read a particular line on a Snellen chart, that's the criterion. If it takes one person five minutes to read it and there are plenty of difficulties, and another person simply sits down and reads it, it's considered you're reading. In terms of functional vision, that doesn't really reflect what you're going to have to do when you actually have to focus outside, but for the purposes of glasses or whatever, that's all that's needed to be known.
In ophthalmology there is a tendency -- because of the highly structured way in which the assessment is done for acuity with Snellen readings and so on, everybody does their own thing from scratch -- if you bring your previous records, not to go from there or to deal with further problems, but in fact start again at the beginning and get yet another reading. Sometimes the readings are not secure, but if you have a reading to leave by, it's as though something was done.
There are two other problems I would just like to mention around the use of high-refractive correction, and I'm speaking now from --6 up. You can see that certain things take hold. One thing I'll just mention to start is that once you put on your glasses, you don't think of yourself as being in any way vision-impaired, and no one else does either. So if you have problems adjusting to the lenses or whatever once you have glasses on or, in the case of some people with very high correction who can't wear glasses as easily, contact lenses, it appears as if you have no correction whatsoever.
It's quite startling to look at exactly what the vision equivalents are. If you look at the table, the ICD9-CM, you will see that after 20/1,000 -- that is the most severe benchmark measure for total vision impairment in relation to acuity, so anything above --6 without their glasses is considered very, very blind, and yet those individuals themselves know they can't see but they would not think of themselves as blind.
You can go through many years and put up with many difficulties with glasses that are unstable or unworkable, or you could have two pairs, for example, that you can alternate between -- headaches, you could have swimming when you turn your head, you could have washed-out colours, a lot of different things -- and you would think that basically your vision was really normal and then if you aren't able to wear your correctives at some time, you're in for a big surprise.
There's absolutely no recognition there that any adjustment or visual problems have to be dealt with by physicians or have to be dealt with by the individual, but when the crunch comes, if it does come, then it is the individual left without any preparation for that. There's almost no disability or impairment I know of where it would be completely normal apparently and yet be so fundamentally severe.
The other relationship to that is that in the theory of myopia initially it was about increased muscle tension, and this seems valid once you're in very low levels of --1, --2, --3, and it was originally in that area that glasses were prescribed, but as you go higher up there is no sensible equivalent. People generally think of it not in terms of muscle tension but as an operational definition, so that the meaning of myopia has fundamentally changed, depending on whether it's used for high refractive error or low refractive error, but as a patient you are not told any of this information. It's considered not relevant and yet of course it is relevant if at any time you can't use your glasses. You have no history of these sorts of problems or these sorts of difficulties in prescription.
But the most serious problem of all, and the one that is, I think, most of concern to the Advocacy Commission and its actions, would be the consequences of what we could call a theoretical debate, although it's difficult to have a theoretical debate between a patient and ophthalmologist or someone else in vision care. But it comes down to that because the theory in ophthalmology behind the use of glasses is a theory of the eye which is held only by the medical community.
If you find that within that theory you can't be corrected, you find you also can't be seen by anybody in medicine. And there is nobody else out there. There are professional groups called psychophysics and zoologists and other people who know a great deal about vision, but they do not use a model of the eye as primarily a motor unit, a lens. The view of the eye as a motor unit is that the eye's a kind of camera, but there are many problems with that because the eye in fact doesn't have a shutter and no camera will be without one, and the eye in fact has a soft lens and not a hard lens. There are some other difficulties as well.
All the other theoreticians or all the other people with any kind of practice that you might have access to in research or whatever have really no relationship with ophthalmology, other than they sort of know each other's there and they agree to disagree. If you're in the middle, you find yourself unable to get referrals to these other people and it's very difficult to simply approach them cold.
But other people do not see the eye primarily as a motor unit. They see the eye as a photoreceptor, which is to say that the eye is a sensory organ whose primary job is to deal with light. They have behind them some very good research, which is now many years old, that is virtually unreported in medical textbooks or ophthalmology textbooks. So if you were to actually look at vision and see what it was in a physiology textbook or a biochemistry textbook as opposed to looking at vision in, say, Taylor and Best or another book that was described as the physiological basis of medicine, you would find that the order of presentation of information and what's in there is very different.
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But a theory that says the eye is a photo receptor says that light matters, that it isn't just coincidental to the eye and it's not just gratuitous. It says that impact light has a major influence on whether eyes can actually see and whether they make images and so on. This is a modern theory. The most recent Nobel prize was in 1967 by a professor called Dr George Wald, who won the Nobel prize when he established, over about 20 years, that vitamin A made it possible for the human retina to use light.
If you speak to an ophthalmologist about vitamin A, typically you are told either to go see a nutritionist or that really they don't know what tests would determine it or what the conditions for taking a test for vitamin A are. If you tell an ophthalmologist that when you are in certain light levels or bright lights you can actually see extremely good, certainly they will say to you, "Well, that's impossible with your vision to see that." They will say, "That is absurd," and they will write it down as a claim only of some kind. They will laugh and find it a "miracle." They will say quite demeaning or demoralizing terms. These are the points at which advocacy may prove useful, but it's difficult to know just what advocacy would do.
So I am just explaining here the basic sort of different world view that is excluded from medicine at the moment to really not any good purpose, because in science you must use all the literature that's around in most cases, and ophthalmology is very marginal in a sense. It's absolutely central if you need care; that's what you get. But that is not what we know about the eye as a country or as a community that deals with science. So it's out of step in a very fundamental way. If you happen to have vision which falls into that problem, then that is a real problem for you. It's not a problem for ophthalmology, however.
This is something which is not negotiable. Ophthalmologists will not verify. If you say to them, "Come outside and prove me wrong," they will not actually follow you outside and let you do that, because that is just not relevant to vision care as far as they're concerned. Even if they can't figure out what's wrong, well, then they'll let you go, rather than step out and actually write down on a note, "Yes, she could do whatever it is that she claimed she could do once she's in the light."
I'll just mention another blind spot that seems to also be present in ophthalmology, or in vision care in particular, the way it exists today, and that is the idea that glasses don't cause any problems. For example, if you take your glasses off, the view is -- well, it will be just the same as if you had them on, but your eyes will be blurry. That is not the case for some people. In fact, when glasses are prescribed for children, sometimes by putting someone who's been unwell in a dark room, using an anticholinergic like atropine, you actually can give them an artificial reading as high as 6 dioptres higher than they would normally have to induce a high myopia.
Now, if you do that you will see -- let us take the case of --10. You will produce a non-transient acuity of 20/25000, which is .00078 of normal sight. You will find you have a globe which is a link -- the shape of the eye is now spherical instead of round and it's 3 millimetres in length longer. So you have a tendency to stretch the retina, you can stretch the optic nerve, and you can cause a malalignment of receptors.
In general, when you wear glasses long term, you only use central vision and the periphery of your retina tends to be degenerative in a characteristic pattern. When you put glasses on you usually focus at the plane of the glasses, so you have one focal point, whereas in normal vision we have multiple, infinite spontaneous focusings all over. So if you take somebody who's had these glasses on -- now, the physicians know this is the case but they don't tell you -- and when you come out of glasses or can't wear them, you get many optical effects which clearly seem to resemble the removal of correction once had under an eye, perhaps what was wrongly prescribed. But you will not find an ophthalmologist who will take on this problem even though your signs to him would be bizarrely unnormal but they're highly structured in terms of the fact you can track them down yourself or with others' assistance. But you will not get assistance in getting usable vision temporarily.
In finishing, let me suggest that the role of advocacy in this case is quite different. The role of advocacy in such fields that are closed, when they're identified to be so closed to options, and if they're closed on the basis, as I've suggested, of a kind of magic bullet which has in fact taken over the field and the way in which the body part or whatever is determined, and if these people have a monopoly, then if you don't have a body part which behaves in a particular way, you won't get treatment.
If you're talking about a very severe disability, if you don't have cooperation from medical people who are supposed to know and are in positions of authority to know, you have a whole realm of social problems which come from that in which advocacy becomes more and more and more involved. If you wait five years for the Human Rights Commission or whatever, what do you do in those five years? There isn't a problem of attrition here. Things do not get better. People go on with their lives and there you are. You're not getting care and there's a good reason for it, and there is no forum in which there can be immediately some relief provided.
So advocacy takes on a new role and it touches upon telling a doctor how to do his job, which is a very difficult role for advocacy and I suggest is a role that has to be at some point considered, particularly when there are other resources out there which can be brought into play except perhaps for the stubbornness of any particular ophthalmologist or any particular clinic.
In terms of consent to treatment, the question arises --
The Chair: I'm sorry, Ms Hughes. According to our clock the half-hour is up and unfortunately we cannot hear the remainder of the tape.
Ms Hughes: May I make a comment here?
The Chair: Yes.
Ms Hughes: I believe my tape recorder actually runs at a faster speed and it's more natural to my voice sound. That's why the tape drags and that's why it's actually longer than the allotted time, because it does come in under 30 minutes. That's, I think, the problem here.
The Chair: Not according to my --
Ms Hughes: But it's the machine it's been put on, and that's a real problem with tapes. I would really appreciate it -- it's in almost the second-to-last line. I'd just appreciate it if you'd just finish it.
The Chair: It's the committee's wishes.
Mrs Caplan: Let her finish the tape.
The Chair: Okay.
Ms Hughes: Would you mind? I know it's a problem you're not used to and I did want to explain it. It's so complicated, I had to --
The Chair: The difficulty is, Mrs Hughes, that we have people waiting --
Ms Hughes: Yes, I appreciate that.
The Chair: -- and we're behind schedule. That's my fault, not yours. Can you continue with the tape, please?
Ms Hughes: Do you have consent to treatment if there's no other way for them to access you -- or so they say -- but by doing it by a way which is extremely dangerous? So some treatments or assessment procedures which are considered completely reversible and innocuous for most people disable severely other people. Now, there's no research on much of this and it comes down to a judgement call: "Let's just get on with it and see what can happen." But the pragmatic view often gets taken by the patient long before the physician sees the need for that.
The Advocacy Commission becomes involved simply because it is the only agency that has the resources, or would have, to survive over the length of time required. It intervenes now, but it also continues to intervene, if it exists, year on year. Organizations like Parkdale Community Legal Services and so forth exist for the court cases or the hearings at that time. They're not there to collect a file together; they're not to follow through on all the difficulties as things unfold.
I have tried to suggest on this tape what I feel are roles for the Advocacy Commission that I don't think have been yet considered. Thank you for your attention.
I'm sorry there isn't time for questions. Thank you very much.
The Chair: Thank you, Mrs Hughes, for your thoughtful presentation.
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Mr Tilson: Mr Chairman, I'd like to make a motion at this time, if I could be allowed to make a motion, which hopefully members of the committee would agree with. It has to do with an inquest that's proceeding at this time before Trevor Gillmore. I think this inquest was mentioned in the proceedings yesterday. I don't think it's appropriate for the committee to debate the facts of that inquest at this time, but as I understand it, the decision of this inquest is going to be announced next week.
I think it would be useful to the committee, once that decision has been granted, that if there's any material that comes out of that, this committee requests the clerk to obtain that information. So my motion essentially states that we ask the clerk to receive that information from the inquest before Coroner Gillmore as soon as their decision has been made, to assist us in our deliberations.
The Chair: I don't know whether their has to be a formal motion. Do we have unanimous agreement on it? Thank you. Mrs Johns?
Mrs Helen Johns (Huron): Maybe you could call up the people and I could give a point of clarification while they're moving up. I just wanted to do something with the health consent act, if that was all right.
The Chair: Yes. We'll be calling Patricia Bregman.
Ms Patricia Bregman: I'm not going to be presenting, but the other three people from ARCH will.
Mrs Johns: Rights advice under the Mental Health Act is being maintained. It was something we've heard a couple of times over the last day and I just wanted to clarify that. We're making no substantive changes to the Mental Health Act with respect to rights advice. The only change we're making, really, is who will provide the rights advice. So I just wanted to draw that to your attention, and if you have any other questions, you can ask me about them.
Mrs Caplan: If I could, Mrs Johns, I think there should be some clarification on that, because the Psychiatric Patient Advocate Office provides that rights advice, but they only provide that now in the psychiatric hospitals. All of the schedule 1 hospitals that provide or have psychiatric programs at the present time have been receiving whatever advice they get from the Advocacy Commission, as far as rights advice.
Mrs Johns: That's right.
Mrs Caplan: The concern is, following this legislation, by whom and how is that rights advice going to be provided to other psychiatric programs? It hasn't been clarified and it's not in the legislation. I think there would be a lot of comfort -- and personally, I think it should be the PPAO, who have had excellent success in the psych hospitals, who should have the mandate expanded to include the psych programs in not only schedule 1, but if there are any other general hospitals. If you would bring forward an amendment to that or clarify that on the record, I think it would be very helpful.
Mrs Johns: For the psych facilities, and it would be the government-run psych facilities, we're still suggesting it would be the PPAO. For other facilities, we're suggesting that it would be put through by regs and the rights adviser will be folks designated by the facility through the regs.
Mrs Caplan: You see, that's the problem. The problem is there that the rights advice could be the administrator who would select someone who would have a direct conflict, and that's the issue. The issue is, we believe, I think, that the proposal that a hospital administrator in a general hospital could decide who the rights adviser is is inadequate.
Mrs Johns: Okay, but regs could put those criteria in that you wanted.
Mrs Caplan: That's the problem, is the regs could do it without any input.
The Chair: The time for debate is clause-by-clause, and you both put your views on the record. Now to our guests.
ADVOCACY RESOURCE CENTRE FOR THE HANDICAPPED
The Chair: Could you identify yourselves for the purposes of Hansard.
Mr David Baker: Thank you, Mr Chair. My name is David Baker. I'm the executive director of ARCH, which is a legal centre which serves persons with disabilities across the province. On my right is Etta Ginsberg-McEwan, who is a board member of ARCH and has a long background in social work on behalf of seniors. On my left is Patrick Worth, who has also been involved with ARCH for many years and is the past president of People First, which is the national organization of persons who have been labelled developmentally handicapped.
Let me say at the outset that we're going to have a very difficult time with the time constraints and we have decided that we wish to speak for the 30 minutes. If people have questions, then people know, I hope, how to reach us. If not, we'll be pleased to tell you.
You have a fact sheet about ARCH. Let me just say that we are accountable to the disabled community by fact that 54 member organizations provide the membership and the board of ARCH, and you'll have available, I believe, a list of those 54 member organizations. Virtually every disability organization in the province is represented on ARCH.
There is only one area where ARCH has taken a position in its goals and objectives on a particular issue -- over all the years of our existence, only one -- and that is the issue of advocacy. It is something which from the very outset ARCH has felt strongly about. All our 54 member organizations endorsed the goals, including the goal of advocacy, as a condition of membership in ARCH.
I don't have time to cover many issues, and I'm going to fly because the two speakers on either side of me have far more important things to say, but let me just highlight the brief for you.
You've mentioned one inquest. There is an inquest ongoing. There is no representation at that inquest from persons with disabilities, which is unfortunate. That may or may not be remedied before the end of that inquest.
I would point out to you -- it is referred to in the brief; there are many, I note, that are not referred to in the brief -- there have been numerous inquests over the years, persons with disabilities dying in institutions in the community, in a number of settings, where there was a recommendation of advocacy legislation, as proposed by Father Sean O'Sullivan, with a legislated mandate, an independent commission. Those recommendations have come out of numerous coroner's inquests, and I would ask you not to be unduly influenced by one inquest where, for reasons not entirely understood by us, disabled people were not notified that this inquest was going ahead.
The brief touches on a number of circumstances. I would simply say that the issue of advocacy has evolved over a long period of time. A large number of people have been involved. Our brief goes all the way back to 1981, a case involving a young man named Justin Clark; the Abella report in 1983; the Fram report; the O'Sullivan report, on and on. There are four, five, six reports that have been conducted over the years, going back to Conservative years, Liberal years and NDP years. This issue is not a partisan issue, it has not been approached on a partisan basis and we would ask you to think about it in terms of what is important for persons with disabilities and seniors in this province, not as a partisan issue.
The brief refers to a number of principles. We don't have time to review it with you, but I would point out one thing: The primary principle in relation to advocacy -- it's come up in discussion and interplay we saw here today about rights advice -- is the issue of independence. It is crucial that advocates be independent. If they are not, they will not have credibility with the people on behalf of whom advocacy is to take place.
You should not be surprised that people are dying on the streets and are being approached by police officers and firemen and are saying, "No, I don't want to go with you." If someone who had actually lived on the streets themselves were approaching those people, the response would be different, but there is nothing like that in place in this province. People who are vulnerable are not being approached by people who have been there, who have experienced what that person is experiencing, and that is something which was critical to the Advocacy Act that was passed and has never had the opportunity to demonstrate its effectiveness.
The second point I'd like to make about independence is that it's crucial if they are going to recruit volunteers as advocates. I heard there was discussion yesterday about the possibility of all people in Ontario, as Sean O'Sullivan had said, being advocates.
The process which led to the establishment of the Advocacy Commission involved nominations coming from 400 seniors and disability groups from every corner of the province. The smallest towns had people who were involved in the process of establishing the Advocacy Commission.
That's important for two reasons. I can only emphasize the second, but the first is that that means the commission was intended to be and was in fact representative of the community it was to serve. The second point is this: Less than 5% of those organizations have any staff person whatsoever. If you believe in volunteerism, if you believe in involving people who are not paid in helping those who are in need, then the solution was exactly what was in place in the Advocacy Act. It was to involve those 400 voluntary organizations of people with disabilities and seniors across the province who were prepared to continue to volunteer their time and asked only for the smallest amount of support from an Advocacy Commission. They were not looking for salaries. This was not bureaucratic. Those 400 groups knew they were never going to see money, but they had hoped to have some support, be given some legitimacy, be given some training perhaps in what it was they had to do on behalf of vulnerable people. That is lost as a result of the repeal of this act.
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If you look at, as a substitute, something like the proposal put forward by the commission of a non-profit, it may be possible to link in that kind of effort. But the idea that traditional volunteers such as those you see in hospitals offering tea are going to be able to go out in the streets and help people freezing on grates at night or into institutions where abuse may be happening is not realistic. That is not the person you're looking for as a volunteer, those are not the people who are going to help; it's going to be the people who have been there.
Mr Patrick Worth: I don't know what I can add to that but to tell you a little bit about myself. I was a person who was labelled as developmentally handicapped and I was put in a special-ed class at a very early age. Throughout my life I was put in one part of segregation or another. I served a lot of time in a sheltered workshop in a group home, which many people may not consider as institutional, but I considered it as institutional because of what people thought, my disability. Nobody really thought about what my capabilities were, and there was a reason for that: The people in my life were people who were paid to service me.
Sean O' Sullivan says that a friend is not someone who can be paid, and he's entirely right. A friend is someone who is there only for the reason of being a friend and to get to know the individual and to get to know how we can all be supportive. When I think about that I think about the one goal that perhaps we all have in life: to be able to wake up in the morning and realize that we are loved and that we are cared about and that we have people in our lives who will come around and be there for the sake of being there because we are friends. To me, the most important part about advocacy is the friend.
Sometimes people will need someone who is paid. In fact, when we look at all of our lives we do have someone who is paid, but there's never been a guarantee that there will be someone in our lives who will be there just for being in our lives. My doctor is paid to give me medical attention. I have to see him whether I want to or not, and sometimes I don't want to. But I'd rather think about who really is my friend in life, the person who will stand by me no matter what. This is what very often Sean O'Sullivan talked about in doing the advocacy review for vulnerable adults. He said that we must pay attention to who will be there for the person in their life.
In 1986, I went to work at the Advocacy Resource Centre for the Handicapped as an institutional outreach worker. I was very excited about this job, about connecting with people in institutions and giving people who have been traditionally segregated a chance to maybe connect with some other people in community life. But ARCH hired me for one specific goal. It was based on advocacy, that was their belief at the time and that remains their belief, as many organizations believe which are connected to ARCH. I have to believe that ARCH hired me based on my advocacy skills and my personal belief that all people can be supported in society and that all people can be a friend to someone.
As I came to believe in this in myself over the years of being segregated, this was the reason why I was so excited about doing the institutional outreach project. It connected me to a lot of people who were still traditionally segregated from this service of institution. I didn't have any surprise as to what the residents didn't know about advocacy or about how people can advocate for each other in terms of support and just being there at a very vulnerable time in someone's life.
I think in many ways advocacy is still new to the individual's life and is still something that people wonder about: What exactly is advocacy? I think Sean O'Sullivan would say advocacy is advocating for a friend, what he called the assured model, You've Got a Friend. I sincerely believe in this. This is why he entitled this review You've Got a Friend, because he said time and time again that advocacy must mean you have a friend.
As I looked at my past life I didn't have many. I had people who were paid to service me. It doesn't mean that paid people are necessarily bad, but it does mean that I had a lack of friendship. Service does not always mean support. Service means doing things for people. Sometimes service is necessary, but it doesn't necessarily mean support. Service is that I will provide for you; it doesn't necessarily mean that you believe in persons, are helping them to do it themselves, to have a right, are looking at that person as a person who has choices in his life. We are people who traditionally have had rights taken away from us by people who don't believe in us, by people who don't believe that we can make our own decisions, and we should have a right to decide. Sean O'Sullivan believed in that with all of his heart.
I got to know Sean O'Sullivan when I was representing People First on the consumer advisory committee, which was part of putting together this You've Got a Friend. I came to know him as a sincere man who came out of his paid role to be a friend to people with disabilities as much as he could. He went around the disabled community, connected people with disabilities, asked for their advice and asked for their input to the review. He went into institutions and talked to the residents -- not just the staff who were there but talked to the residents -- to see what their lives were like. It made a difference in my life that he was willing to do that.
Sean O'Sullivan was a man who had leukaemia and knew that he probably didn't have much time left. Almost all of that time during his last couple of years of life was spent in trying to develop an independent advocacy system in Ontario. He documented how many people were vulnerable in institutions for that reason and for what reason they were vulnerable. Many people are abused in institutions and can't cry out for help because they are isolated, segregated places and we cannot hear them. That comes to having a part in having a voice. How do we have a voice if we can't hear the people who are crying to have a voice?
When I think about that I again think in terms of my life. I didn't have a voice; I was restricted; I was told what to do day in and day out. I never had a chance to voice myself about what I wanted to do in life, what I could do in life and what I could learn. If you're only going to look at the disability of a person, you're only seeing one part of that person. We all have abilities and that's how we should all be recognized.
I'm going to read part of what Sean O'Sullivan said in his closing remarks about the assured advocacy model and why he believed that advocacy must mean You've Got a Friend.
"It needs to be enhanced and encouraged. Volunteer advocates provide the possibility for more widespread and locally sensitive advocacy services. The training of such volunteer advocates is consistent with our belief that advocacy is not just a function of government; it is part of our responsibility to care for one another as family members, friends and concerned citizens.
"Volunteer advocacy will make a positive contribution to the lives of both the vulnerable adult and the advocate, who will experience the satisfaction of learning that we still need one another and that we can still make a difference in the wellbeing of others in our society.
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"While recognizing the need for a core of equally dedicated, professionally trained and suitably paid advocates, this review has concluded that the heart and soul of advocacy services will depend upon caring volunteers. Sometimes there is frustratingly little that can be done to change or improve the sad circumstances of some of our vulnerable citizens, but volunteer advocacy can advance the possibility of assistance and at the very least provide vulnerable citizens with the hope and satisfaction that they no longer face their circumstances with the additional handicap of loneliness or abandonment.
"Shared advocacy in Ontario, once implemented, will say to those in need, at the very least, `You've got a friend.' Sometimes that is the biggest and best difference in all our lives. It is the difference we should be willing to make as we learn, with renewed resolve, to stop acting as strangers when confronted by those to whom life has been less than kind.
"If Ontario is to continue to be a caring, compassionate and progressive society, we must replace fear with friendship and inaction with advocacy. Regardless of physical or mental illness and/or impairment, vulnerable persons must have the power to make decisions and exercise their right of choice. People are people whether or not they have identifiable handicaps.
"The advocacy system is designed to foster in a vulnerable individual a sense of dignity as a valuable contributing citizen of Ontario. There is nothing in this report that cannot be achieved if there is the political will to recognize the genuine needs of Ontario's vulnerable citizens. May we now move forward and never turn back."
I can't say it any better than that; in terms of my life Sean O'Sullivan has said it in here. This could have made a difference in my life a long time ago. Now you have a chance to make a difference in the lives of many people with disabilities across Ontario if this is implemented. Thank you.
Ms Etta Ginsberg-McEwan: Good morning, and hello to you, Mr Clement. You and I met November 25, 1995: ARCH priority day. You said you learned a lot from me and the rest of the people. I don't think I was such a good teacher, because you're still at square one. And you, Elinor Caplan, I don't think you're aware of how condescending you were yesterday to Aaron when you said to him at the end: "Your parents are trying to do the best for you. They care about you. They're afraid of risks." I know you meant well, but don't talk to us like that.
What I'm going to ask you all to do this morning is to put on your third ear and listen, and to look with your third eye. Your regular eyes and ears filter out, because you can't bear our pain and you think we're too emotional. Put on your third ear now and listen to us.
How did I get to be this way? I've been disabled most of my life, and any abuse in the books -- physical, emotional, psychological, sexual -- you name it: all there. When I was 16 I vowed I would become a better social worker than any who had been paid to service me and who ignored me, and I vowed that any human being whose life I touched would never go through what I went through.
I have kept that vow, so that in June 1995, when ARCH called me to be a volunteer advocate for an elderly woman I thought for a moment, "I just left Baycrest; I need a rest," but I remembered that vow, and we're here on earth to care for one another, so I took it on. This is an elderly woman in her eighties, who lived in Vancouver and the Yukon. She sustained a stroke several years ago in Vancouver, and the family put her in a nursing home, without discussing it with her and without her consent.
Back here in Toronto there's a younger family. This elderly woman raised the woman here in Toronto as a daughter. She didn't officially adopt her; let's call it an emotional adoption. This young woman in Toronto would go to Vancouver to see what was going on and how things were going, and she found her in a deplorable state and brought her back to Toronto for a three-week visit. The woman asked to stay here, and so she did, and the family in Vancouver were in a rage. They took over the Vancouver condominium apartment -- the woman has a lot of money -- took over the condominium and took all her possessions. To this day we don't know where they are, and the public guardian and trustee has not made a single effort to find out.
About two summers ago, the people here in Toronto, with the elderly woman, decided to take a motor trip to Vancouver and the Yukon to see how things are and visit. After that visit, the relatives and friends complained to the equivalent of the Ministry of Community and Social Services here that this elderly woman was being abused.
What did they do? They didn't call the woman here. Like the CIA and like the RCMP and Gangbusters, they got in touch with the equivalent here in Toronto, and the public guardian and trustee, whom you think so highly of, entered that home, without any call, threatened them, took pictures of the house, said they would take a lien on the house if they didn't cooperate. It was an absolute nightmare.
The elderly woman had spent thousands of dollars on legal fees before ARCH entered. The younger family had to hire their own lawyer to protect themselves from the public guardian and trustee. And then I entered the picture.
The woman was not sleeping; she had bouts of severe diarrhoea; 87 years old, never been subjected to this; millions -- I'm exaggerating -- of assessors. Be very careful about assessors. They don't know how to talk to old people, let alone young people. I'm sure if they asked you what your bank account was or where your stocks and bonds were, you wouldn't know unless you went back to your files. They made awful decisions. I met with her and gave her a voice. I did not tell her what to do. That's not what an advocate does. And then I wrote, which I never knew I had to do before, affidavits. To make a long story short, we won the case. She now has complete control over her own finances, and they will be put into a trust company.
The rumour around the public guardian and trustee office that has come my attention is, "Are there any more advocates in Toronto like Etta?"
I want to tell you what you're doing to us. First you repeal the employment equity and Marilyn Mushinski says, "We'll give you computers and we'll give you hearing aids and you can compete." What the hell does she know about attitudes? I cannot tell you how difficult it has been to get a job for people with disabilities. That's the first thing. Now there's a big screwup with Wheel-Trans. Now there is this: taking away advocacy. All in seven months. And then there is the welfare screwup with people who have disabilities and old age assistance.
Do you see the continuum? In olden days they put us in volcanoes. Hitler put us in gas chambers. You are a bit more -- and when I say "you," I don't mean the collective you around this table. You are putting us in an institution. You call us a special-interest group. We are not a special-interest group. The reason you can't hear us is because you can be us. You can have a stroke. Some of you are eligible for heart attacks. Some of your children will given birth to children with autism or mental impairments. Some of you will be in automobile accidents. Talk to Ian Scott; he'll tell you how his life changed overnight and how people began to talk to him.
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You said yesterday, Elinor -- I don't know you, really, so I should say Mrs Caplan -- you said yesterday that every day we go through it. Well, I'm not physically abused any more and nobody messes with me. But I want to tell you something. Every day is abuse: It's a nightmare of attitudes, of architectural barriers. You have absolutely no comprehension of what it's like.
I looked up the word "justice" -- because this is the committee on justice, right? -- and this is what it says: "To behave with justice ethically, to act in such a way as to show full appreciation of the worth or importance of others." In seven months we have seen our rights go down the drain.
Let me just close with this. I recommend this book. Tony, read it, because you're a good guy and we could be better mentors for you. You don't have a good mentor. This book is called Pride Against Prejudice; it's by Jenny Morris. Read it.
To continue to live as best we can, keeping faith with who we know ourselves to be in the face of what society has decided we are, does take courage. But it's a quiet, unspectacular and, above all, unrecognized courage. Real courage has no witness and no rewards.
I want to leave you with this. We should keep in mind, when we are being treated in this way, that these things generate from the murkier depths of humanity and that they are not perpetuated consciously. We need to make the effort to understand that people are far more disabled by their attitudes than we are by our physical and emotional and psychological conditions, once we acknowledge it unreservedly.
I want to thank you for giving me this opportunity, but I want to tell you, it's humiliating. It suddenly came to me last night when I was watching the replays. It is humiliating. I feel humiliated to have to come before you to plead for my life. Think about that. Think of all the power you have over me. It's disgusting. It's a shame. Remember how you will be written up in the history books.
But I'll tell you what gets me through each day: There is a high power that I have to answer to and that everybody has to answer to. I'm not threatening. There is a just God. Thank you.
Mr Baker: Let me just close with one comment. It's this: We haven't addressed the other pieces --
The Chair: You are presently two minutes over your allotted time, so make it very short.
Mr Baker: It will be very short. ARCH has not addressed the issue of the other pieces of legislation because, in our view, the other pieces of legislation cannot stand without the Advocacy Act. In our view, substitute decision-making, mental incompetency, whatever you want to call it, is the most serious intrusion on civil liberties of a citizen it's possible to have. It removes every single civil right a person has, and to do that with no due process -- one doctor's signature, without advocacy, without mechanisms of informing people that their rights have been removed -- cannot stand. It's our position that there is a grave mistake being made if the Advocacy Act is repealed. Thank you.
The Chair: Thank you very much for your most stimulating presentation.
ETHNO RACIAL PEOPLE WITH DISABILITIES COALITION OF ONTARIO
The Chair: Good morning, Ms Haniff. We have one half-hour allotted to your presentation, which includes questions if there is sufficient time. You have our attention.
Ms Rafia Haniff: I apologize for not being here at 10 o'clock. That was because of Wheel-Trans; they were very late and that's why I was rescheduled for now.
I would have liked to make this presentation with other members of ERDCO, the Ethno Racial People with Disabilities Coalition of Ontario, but a lot of them, when asked to come here, tried to book their rides with Wheel-Trans and were not given rides. That's why I am doing this presentation alone.
Thank you for giving me this opportunity to address this very, very important issue regarding the repeal of the Advocacy Act. My name is Rafia Haniff and I'm the chair of ERDCO, the Ethno Racial People with Disabilities Coalition of Ontario. ERDCO is a provincial cross-disability consumer organization. Our members are made up of people with disabilities from various cultures, various religious backgrounds and various ethno-racial backgrounds. Our members face multiple disadvantages due to their sex, race, disability, age, poverty etc. Our goal at ERDCO is to promote awareness and understanding of the issues we face, and not only understanding of the issues, but also to help find solutions to these issues.
When we talk about advocacy in this province, we should all remember the words of Father Sean O'Sullivan, who said in his report nine years ago, "Ontario needs advocacy." Today, more than ever, this holds true. Now it is even more urgent, and that is because of all the cutbacks to services that people with disabilities are facing. People with disabilities are faced with poverty, isolation, discrimination, abuse, racism, sexism -- the list goes on and on. The issues are even more serious now. We are at a time in society when the most vulnerable are hurt.
Where is our social conscience? Do we ever think that one day it could be us, that we all will have to grow old some day or any one of us could become disabled, as the previous speaker talked about, at any time? With a stroke of the pen, the government repeals the Advocacy Act, the lifeline for many vulnerable people in this province.
I'm distracted by so many people leaving this room who should be listening. I'm getting very distracted and worried.
Do you ever think of the effects of these mere words on paper, what it means to people with disabilities and seniors? You're just going to repeal the Advocacy Act. For one moment, I would like to take us to these people:
Joseph Kendall, who was admitted to the hospital for pneumonia, died. He was overmedicated, neglected, dirty, disoriented after spending months in a private nursing home. He was abused.
Then there was the story of Chandra and her husband, Harry, both of them with disabilities, living in a roach-infested apartment, very dirty. They had very little to eat and they were both ill. They had to sleep in their wheelchairs many nights because an attendant was not available to put them to bed. The attendant who was looking after them stole the little money that they had and this left them in even a more difficult situation. They were afraid to report this incident because of fear the service was not going to be continued.
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There was also the story of Marion, who was tied to a wheelchair by day and to her bed at night in a hospital. She died when she became tangled in her own restraints and strangled on them.
There was the story of Zulie, who was told to shut up and that she was crazy when she reported that she was sexually abused in a chronic care institution. No one listened to her. She spoke very little English and had ALS, Lou Gehrig's disease. She attempted suicide.
These incidents go on and on. Seniors and people with disabilities have been abused. They have suffered trauma and died throughout this province in alarming numbers and disturbing circumstances. The community is furious. We're frustrated and frightened by this action to repeal the Advocacy Act. This act was intended to lessen this human tragedy. The problems that existed before the legislation will now be increased.
There is no mechanism in place to address these issues. While new and different policies will be drafted, more abuse, more isolation, more acts of indignity and death will occur. The community has struggled hard to accomplish what we've accomplished in the Advocacy Act. With your political whim and uncaring fancy, people will be made to suffer. If the government believes that advocacy will exist because they think it will, then our society is in real jeopardy.
People have their individual rights ignored. This act was a good attempt to inform people of their rights and maintain and execute those rights to the wishes of vulnerable people. Ontarians have been treated with indignity and disrespect because of their age and disability. This act was to ensure that people maintained that dignity and that respect.
The need for advocacy and legislation was recognized and supported by the Conservative government. The repeal of this act is not a sign of progression, but major regression. If the government sees the need to repeal this legislation and dismantle the commission, what are the replacements? What should we have in place instead of the Advocacy Commission? We know that advocacy needs to be established and supported for it to be effective.
Some of the recommendations that ERDCO is suggesting are:
Ensure that legislation is in place to encourage accountability. One of the things that the Advocacy Commission is proposing right now is a structure of the non-profit organization, cross-disability organization. That is one of the structures that we at ERDCO would support.
We feel that government should make advocacy for the people by the people. Let it be from people with disabilities, and it must be a cross-disability approach.
Education and training must be an integral part of advocacy.
Community development must be an important aspect of advocacy, so it can be effective and continuous.
Rights advice must be given by an independent person and it should not -- I repeat, it should not -- be left to the discretion of the public guardian and trustee. Rights advice should not be left under the Substitute Decisions Act. We feel that this is a conflict of interest.
Vulnerable people must be an influential part of the decision-making process.
Advocacy must encompass all forms -- individual, systemic and non-instructed advocacy.
Institutions, caregivers and family must be accountable for their adherence, or failure, to ensure advocacy is demonstrated properly.
Father Sean O'Sullivan ended his report by saying, "There is nothing in this report that cannot be implemented if there is the political will to do so." In that respect, I urge you to exercise this political will.
The Vice-Chair (Mr Ron Johnson): Thank you very much for the presentation. We're going to move on to questions. Each caucus will have about six minutes approximately and we'll start with the third party.
Mr Marchese: I want to thank you, Ms Haniff, for your presentation. We've seen you before in the employment equity hearings. I always enjoy hearing your views, because I think they're representative of the people you obviously speak for.
One of the things that I have talked about is the fact that this government has done one of the most irresponsible things by repealing the Advocacy Act altogether. I think it's irresponsible because in its place they offer nothing else. But besides that, I think that it overlooks all the work that people like you have done, people like ARCH, as an organization, and all the people involved with ARCH have done to bring about the Advocacy Act. It overlooks it, it dismisses it and it doesn't say it's important. In fact, what it does say of the Advocacy Commission is that it's intrusive, it's bureaucratic and it's costly. That's what it says. It overlooks all of the suffering that people like Ms Ginsberg-McEwan, just a half-hour before you, spoke about and the suffering that people like Patrick face on a daily basis.
Although we can't fully understand the incredible barriers and suffering that many of you face, we have a duty, an obligation to listen and to understand how we can better protect, represent and make you more independent, as you should be. So I feel very, very saddened by this government because it continues to take away those few rights that people with disabilities have enjoyed. This is yet another way that they are going to be hurting you. So I'm concerned. I'm concerned because I don't think they also fully appreciate what the Advocacy Act was intended to do. I'm not sure that they have read this piece put out by the commission itself. If they did, I would sense that they would get a better understanding of what the commission was going to do.
I'm not quite sure. Do you have any suggestions on how we might be able to reach people who are not disabled, who are not able to get into your shoes, so that they can better understand why the Advocacy Act and the commission and the rights advisers are important? Is there a way you think that we can reach people who obviously have no way of understanding what the problems are?
Ms Haniff: That's a very difficult thing to do. A lot of it has to do with attitudinal barriers. That's one of the biggest barriers we face as people with disabilities. It's the attitude that prevents us from gaining what is ours, from getting where we want to get, from getting that independence we need. We can do a lot of public education, we can do a lot of awareness, but people have to look at their inner self and look at their conscience and think that one day we don't know where we're going to be, and look at our family members, because I think we all know someone with a disability, and reflect that one day it could be us.
Mr Marchese: Mr Tilson and Mr Clement speak about ways of strengthening advocacy in the community. They talk about how volunteers could take on a greater job of providing advocacy, how the existing agencies are perhaps the ones that should be allowed to continue to do the work they've done. What we have heard from many people, including Mr Baker, who spoke before you, is that there are very few paid staff that do advocacy, very few. In fact, they're getting less money to do what they might have been able to do. Volunteers are not able to provide the advocacy that should be provided, although no one is obviously not permitting them to do it, but it's just not adequate. Mr Baker and Ms Ginsberg-McEwan talked about the inadequacies of that.
Do you have a response to the point about how we make volunteers do the job better for advocacy, how we allow those agencies, the few agencies that are there, that have staff to do advocacy, to continue to do that great work? How do they do that?
Ms Haniff: It's very difficult for volunteers to be involved. They do have a role to play, yes, but the resources were not there before the Advocacy Commission. We've seen the abuse. It's happening. We've seen the rights taken away from vulnerable people. Volunteers were there, but these things were still happening. I think it's very, very important for us to reflect now, at this present time, when we are faced with so many groups going under because of funding and all the cutbacks. We are feeling the effects. We are being hurt by all these cutbacks.
When this government is going to be defining "disability" to limit who gets access to services, that really, really concerns us as people with disabilities, because we are placed in a situation where the services that we need we can't get because someone defines us as not having a disability. So we fall between the cracks here.
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The Vice-Chair: Ms Haniff, we're going to turn to the government side now for about five or six minutes of questions.
Mr Tilson: Thank you very much for coming and expressing your views on this topic. I'd like to talk about the issue of volunteerism. You mentioned the disease ALS, and I can tell you that several years ago my father succumbed to ALS, and it's a tragic thing to watch someone go from a healthy individual down to having absolutely no control of one's physical capabilities. Absolutely tragic. It's devastating for the individual, it's devastating for the family.
In our particular case, we arranged for powers of attorney. We knew he was approaching the situation. When he was competent, powers of attorney were prepared and the family cared for him. As well, I live in a place called Orangeville, which is just northwest of Toronto. In Orangeville there's a wonderful organization called an ALS support group, completely self-funded, in which they provide advice to people, they support people, they raise money for this organization, they do whatever they can to assist not only the people that have succumbed to that disease, but also assisting members of the family in all kinds of things. I support the group myself, in whatever way I can, in whatever limited time I have.
I make that statement as an example of a volunteer group that works. There are all kinds of groups that work around this province, very dedicated people who will do almost anything to assist people. Many of them have come to this committee.
So my question to you is -- and your group, obviously, supports advocacy for cultural communities -- in dealing with that aspect, can you tell me what role, dealing specifically with the cultural communities that you work with, can community agencies and volunteers play in addressing the advocacy needs of Ontario that are so badly needed?
Ms Haniff: My experience in dealing with the cultural community or the ethno-racial community is that there needs to be a lot of education, a lot of awareness, within those groups, even to provide the services that they need to provide. With the dismantling of the Advocacy Commission, which body is going to provide that sort of education?
ERDCO has worked very closely with the Advocacy Commission in doing that public awareness to our members and members in our community, and we find that we really value that relationship and it was very helpful to us.
In terms of volunteers, volunteers have a role to play, but they're not enough. We're all in the community competing for funds, and you're saying that specific group is self-sufficient.
Mr Tilson: I qualify that. They're fighting like everyone else to raise money, but they are self-sufficient. They work very hard to raise money, and they continue to raise money throughout the year.
Ms Haniff: And so are the other groups.
Mr Tilson: Yes, they are.
Ms Haniff: And who are they getting the money from? The same people. Now there's going to be less money to go around.
Mr Tilson: I think we've got an obligation to assist people who need help. We all do. You do; I do; and that's the role. We can't count on the government to do everything in our lives. I can tell you that I personally support this particular support group because, obviously, it affected me personally. But I can tell you I didn't count on the state to help me.
Ms Haniff: But if the state has power, if the state has control, the state has a very, very important role. They affect our lives.
Mr Tilson: Yes, they do.
Ms Haniff: They determine whether we live or die. So it's very, very important. You have a lot of power.
Mr Tilson: Let me ask you another question with respect to families and the role of families. What role do you see that families and friends can play in assisting people who need assistance?
Ms Haniff: Okay, number one: Not everybody has families and I think we keep forgetting that.
Interjection.
Ms Haniff: And the second thing: The families are the abusers sometimes, in a lot of the cases. For our community, ethno-racial people with disabilities, their families are not even here. They're alone in the hospital. They have no one. As for friends, we don't have friends. The people in our lives are people who are paid to be there. We are placed in some very, very difficult situations.
Mr Tilson: Thank you very much for coming and providing your comments to the committee.
The Vice-Chair: We'll move on to the official opposition now and Mrs Caplan.
Mrs Caplan: Thank you. I think it's clear that the government plans to repeal the Advocacy Act and, frankly, I don't think there's anything that anyone's going to be able to say to them to change their minds, that was part of their campaign platform --
Interjection.
Mrs Caplan: I'm glad you raised that, Mr Tilson, thank you. We said that in fact we would scrap the Advocacy Commission as it was constituted by the NDP, but we believe the act could be fixed and that it did not have to be repealed. We never said we would repeal the whole act, so I'm glad you gave me a chance to clarify that.
Mr Parker: That's not what the candidate said in York East.
Mrs Caplan: I can tell you that's what was in our literature.
Mr Bernard Grandmaître (Ottawa East): Are you doing what your Common Sense Revolution said?
Mr Garry J. Guzzo (Ottawa-Rideau): Guaranteed then, and you know it.
Mrs Caplan: The reality is this debate today is about what you're planning to do and I think it's important that we accept the reality that that's what they're going to do. My question is, given that reality, can you see any opportunities through the existing legislation, the consent to treatment legislation, to put in some foundation services via amendment that would protect some of the components of advocacy? Have you thought about that?
Ms Haniff: I haven't looked at the other legislation and looked at it that way. Our main focus was the repeal of the Advocacy Act itself, but we know that legislation would not be able to stand alone; it needs the Advocacy Act to support it.
Mrs Caplan: The fact that the Consent to Treatment Act eliminates the need for any rights advisers, except for under the Mental Health Act -- and we were unclear as to how the government intends to move to even provide that outside of the psych hospitals -- the notion that hospital administrators will be able to appoint advocates but there's not going to be any consistent training of the rights advisers or those who would act in an advocacy position, although not a formal advocate, I think is of concern to a lot of people.
I believe that the Consent to Treatment Act could be strengthened to include some of those provisions. If you'd like to think about that, there's time over the next couple of weeks to submit something in writing. We're looking at possible amendments that hopefully the government would consider that would at least allow for a foundation that wouldn't see the clock turned back entirely. Thank you.
The Vice-Chair: Any other -- you've still got about three minutes.
Mrs Caplan: If I have time, thank you. The question that I've been asking everyone: Was your group consulted in any way during the development of the new legislative changes?
Ms Haniff: No.
Mrs Caplan: Since formal rights advice and advocacy is being eliminated in everything other than the Mental Health Act, my belief is -- and I want to know if you agree -- that as a minimum, there would be an obligation for those professionals who act as evaluators and assessors in the determination of capacity to inform the person that they have been found incapable and let that person know that they have a right to appeal. That is an obligation under the Mental Health Act and it's an obligation of the public guardian and trustee's office. My view is, as a minimum, it should be an obligation under this act for anyone who makes that determination.
Ms Haniff: Yes, I would support that and I think it's very important that the dignity of people with disabilities is not taken away, not stripped away from us. I think that's a very crucial point.
Mrs Caplan: Thank you very much.
The Vice-Chair: Thank you very much, Ms Haniff. We're going to move on to our next group. I want to thank you on behalf of the committee for your presentation.
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HOSPITAL FOR SICK CHILDREN
The Vice-Chair: We'll call upon Dr Christine Harrison and Dr Alan Goldbloom from the bioethics department at the Hospital for Sick Children. Good morning. You have 30 minutes for your presentation and you can begin any time.
Dr Alan Goldbloom: My name is Alan Goldbloom. I'm vice-president of the Hospital for Sick Children and really here to speak on behalf of the hospital. I'm accompanied by Dr Christine Harrison who is the director of bioethics at our institution and who has been involved very much in the education of our own employees around the existing Consent to Treatment Act and certainly in our discussions of proposed changes.
My purpose is to speak today in strong support of the important changes that are embodied in the Health Care Consent Act. It was almost four years ago that I presented a brief to this same committee, then differently composed, on the proposed Consent to Treatment Act, and at that time I outlined some of the major concerns of those involved in child health care. Despite the amendments that were made following the committee hearings, many of the initial concerns that we had were not addressed and the act was ultimately proclaimed.
At the Hospital for Sick Children, we dutifully began an educational process for all of our staff led by my colleague Dr Harrison. The predicted deficiencies of that legislation and the almost impossible task of practical implementation have led to confusion and difficulty in our institution. More important, we've seen no evidence that our patients have been better served. Indeed, when the provisions of the act have come into play, the opposite has been true.
It had seemed from the beginning that development of the Consent to Treatment Act arose out of some very genuine concerns about the rights of incapable and vulnerable adults, particularly the aged and the mentally and physically incapacitated. It was clear to us that children were never the primary focus. Indeed, the law already provided protection for vulnerable children through the Child and Family Services Act. Nevertheless, children from birth onward were swept up in the same legislation.
It's always been our position that a child's maturity and independence evolve over time and don't occur on a specific date. Our society views a child as a part of a family and generally accepts that the parents speak on behalf of the child. In health care, we also recognize that children participate increasingly in decision-making about their health care as they get older. When conflicts occur, they usually get resolved in a consensual process that involves the child, the parents and the caregivers. Regrettably, the Consent to Treatment Act tended to put these three parties in adversarial positions -- a giant step backwards.
It would be our goal to foster independent decision-making as children mature without imposing a complex and legalistic bureaucracy which may interfere with family and caregiver support.
My comments today will be limited almost exclusively to the Health Care Consent Act and are derived from three sources: first, our observations and experience with the implementation of the Consent to Treatment Act at the Hospital for Sick Children; second, the results of a qualitative study consisting of an interview administered over the summer of 1995 in the hospital to a sample of paediatricians, paediatric surgeons and a child psychiatrist; and third, observations and feedback on the new Health Care Consent Act provided by various groups and individuals from within the hospital.
I'll address the following areas: the age of consent; the substitute decision-making process; the appeal process, including rights advice; the Consent and Capacity Review Board, and the scope of consent.
First, about age of consent, neither the Consent to Treatment Act nor the proposed Health Care Consent Act states an age of consent, and we are in agreement with that position.
Children develop in stages, as does their decision-making capacity. With no stipulated age of consent, we may assess the level of maturity and independence of each child and include them in a decision-making process to the appropriate extent. This allows for mature, autonomous adolescents to give or refuse consent to treatment on their own behalf and perhaps without parental knowledge.
Having no age of consent, for example, allows us to treat the 14-year-old who has a sexually transmitted disease who would not have come for treatment if he or she thought that the parents would be informed. Our adolescent medicine clinic in fact regularly deals with serious health problems that some teens refuse to bring to the attention of their families or even their family physicians. Our ability to recognize their autonomy in some areas allows us to win their confidence and to provide treatment and counselling, not to mention the direct impact on health. The lack of a legislated age of consent allows us to recognize that children are persons, and thus individuals. One particular 15-year-old, for example, might be very dependent on his family and immature, while a different 13-year-old might be very independent and mature.
Paediatricians whom we interviewed supported this aspect of the Consent to Treatment Act in that it resulted in treatment alternatives being presented in a less biased way and in the increased participation of children in decision-making. As one of our paediatricians said when asked if she thought there should be an age of consent, she said: "No. It's a relic." So we recommend that no age of consent be included in the Health Care Consent Act.
On the subject of substitute decision-making, those making decisions for children must do so based on a calculation of their best interests. This is a concept with which paediatric health practitioners are very familiar and experienced, and we believe the guidelines for substitute decision-makers in the Health Care Consent Act, which have been clarified somewhat from the Consent to Treatment Act, are helpful.
We also appreciate the new distinction in the hierarchy of substitute decision-makers between a parent who has custody of a child and one who has the right of access only. In cases where parents disagree, this allows us to turn to the custodial parent for a decision. This in fact is a very real and frequent issue in our hospital, where many children have parents who are separated or divorced and whose situations are sometimes less than amicable. The ill child sometimes becomes the focus and victim of the parental conflict. We need clear direction regarding the rights of the custodial parent.
We also strongly support the elimination of the requirement for a formal family member statement, as had been required in the Consent to Treatment Act. The original legislation required that family members who are consenting for incapable relatives make a statement as to the appropriateness of their giving or refusing consent. This just didn't make sense in our setting. It was confusing for parents and it required an unreasonable use of our staff's time. If you can imagine, we have about 200,000 clinic visits a year and the requirement was that each time a formal statement be given, either orally or in writing. In practical terms, this meant that every mother with a babe in arms would have to make a statement to the health provider that she is indeed the appropriate and legally delegated substitute decision-maker for that infant. I'll make a bold confession to you here and tell you I don't think that we as an institution have been in compliance with the letter of the law on this, nor was there any practical or reasonable way for us to do so.
One problem we face from time to time has not been resolved, however. Sometimes we see parents who are incapable of making decisions for their children, either because of their cognitive abilities or a temporary condition such as alcohol or drug impairment or because we're unable to contact them or other family members for decisions. In cases such as these, we've had difficulty in determining who should make decisions for the patient. This is under the current legislation.
In one situation, both the children's aid society and the office of the public guardian and trustee declined jurisdiction while a newborn infant waited for surgery in the neonatal intensive care unit. A judge had to resolve this particular situation, but we would request that the proper decision-making authority in such cases be clarified and reflected in the Health Care Consent Act. Our preference would be that the children's aid society would be the appropriate decision-maker in these situations, as they are more experienced with the needs of children than are those in the office of the public guardian and trustee.
Our recommendations: We support the changes which give priority to the custodial parent, over the parent with access, as a substitute decision-maker; we support the elimination of the requirement for a formal family member statement required in the Health Care Consent Act; and we recommend that the Health Care Consent Act specify that in the case of incapable children, the children's aid society should be the substitute decision-maker of last resort when there are no capable family members available or willing to act.
The existing Consent to Treatment Act prescribes a complicated and legalistic process to be followed if a child aged 14 years or over is found to be incapable. This process includes notifying patients that they have been found incapable; providing children with written notification of their right to meet with a rights adviser and a review board hearing when requested. The Health Care Consent Act has improved this process.
First, rights advice: These requirements really introduced an adversarial atmosphere into the relationships between patients, their families and the health care providers. It is rare that we cannot rely on parents to be advocates for their children. In supporting the removal of the rights advice process, we are not advocating that such children be kept uninformed or uninvolved. Instead, we want to enhance and enable the existing supports which help children and families deal with difficult choices, uncertainties and decisions. This change will allow families to work through these issues with their children.
Under the existing law, if an incapable 14-year-old says no, even to a needle or an injection, then the rights advice process comes into play and the parents are immediately removed from the loop. The reality for those of us in health care is that teenagers say no initially to lots of things, but after discussion with parents and caregivers the situation is usually resolved. We therefore support the removal of the rights advice process from the Health Care Consent Act.
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I might add that many of our staff feel strongly about the importance of patients being informed about their rights when genuine conflict occurs, and plan to consider developing a policy in the hospital regarding this matter. I might also add that most of us who are guided by our professional ethics feel equally strongly that this is something that doesn't have to be included in legislation, but something to which we are bound by the ethical guidelines by which we practise. We support the removal of the rights advice process from the legislation.
On the subject of the Consent and Capacity Review Board, we've had several experiences with this board, the first occurring just a few days after the Consent to Treatment Act was proclaimed. I believe it may be instructive for you to know just how our hospital was impacted.
The first episode involved an adolescent patient with life-threatening anorexia nervosa. Her parents were desperately seeking treatment for her anorexia, but the patient objected. Upon being notified of her rights, she proceeded to challenge the finding of incapacity through the review board. This patient's condition was so precarious that a resuscitation cart had to be kept just outside the hearing room, which was our hospital boardroom. This weak, very thin patient attended the hearing wrapped in blankets, connected to intravenous and attended by a nurse.
Attending this hearing were the patient and both her parents, three members of the review board, a court reporter, two paediatricians, a psychiatrist, two other physicians involved in her care, three nurses, a dietician, the hospital risk manager, a hospital program administrator, our director of bioethics, and finally the patient's lawyer, the paediatrician's lawyer and the hospital's lawyer.
A hearing that was expected to last an hour or two took the entire day. It was like a trial, with each party, the patient, the patient's parents and the paediatrician presenting evidence, calling witnesses, and examination and re-examination of each of the parties and their witnesses by the patient's legal counsel, the paediatrician's legal counsel and each member of the review board. In the end, the board upheld the physician's finding that the child was incapable, but this finding was appealed, resulting in yet another process that was very costly in staff time, physician time and legal fees, and that appeal was unsuccessful.
We found the process complex, costly and in at least one case compromising to a patient's health and wellbeing. While it's important that persons who've been found incapable have the opportunity to appeal that finding, we believe that the process should be more consistent with the ethos of the health care setting rather than the legal arena. We've been assured by the chair of the Consent and Capacity Review Board that they are working to make their procedures more user-friendly and efficient, and this is reflected in the changes to the review process found in the Health Care Consent Act.
A somewhat different concern was highlighted in the second hearing at our hospital. In this situation we had a 13-year-old child with a serious life-threatening illness. The custodial parent refused to allow necessary lifesaving treatment on religious grounds, and the child verbally agreed with the parent. Because our physicians deemed the child incapable and because the care was being refused by the parent, the children's aid society stepped in to take custody. As is routine in such cases, the matter was taken before a family court judge, who granted custody to the CAS. In this situation, the child's legal counsel used the Consent to Treatment Act as the basis of a challenge to the judge's ruling, claiming that this was a matter for the Consent and Capacity Review Board and not for family court. Fortunately, the board agreed that family court was the appropriate venue for this matter. We believe that in future any such confusion and duplication could be avoided if the Health Care Consent Act stipulates who has jurisdiction in such cases.
We support the changes to the composition of the consent and capacity board and the changes which will allow it to function more efficiently. We recommend that the consent and capacity board and family court's respective jurisdictions be clarified in the context of capacity to consent to treatment.
Section 11 of the new act broadens the understanding of consent to a treatment so that it includes variations or adjustments in the treatment. This is a particularly welcome and important change for patients in hospitals. Strict interpretation of the prior or existing act led some of our staff to believe that a new consent would be required every time a treatment was changed, including a minor change in antibiotic dose, minor changes in medication, institution of physiotherapy and so forth. In most acute care hospitals, some elements of treatment will change for most patients on an almost daily basis, and an initial consent must be inclusive enough to allow reasonable day-to-day function. We therefore support this change.
Section 12 of the new act allows one health practitioner to propose a plan of treatment on behalf of all the health practitioners involved in the plan and to make a determination regarding a person's capacity on behalf of all the health practitioners involved in the plan. Again, this is a very positive change for those of us working as parts of multidisciplinary teams. Anyone who has been a patient in an acute care hospital knows that multiple caregivers are involved. Under the existing Consent to Treatment Act, many of our professionals felt that each had to obtain separate consent before they could participate in care. This was simply not a practical option in such a setting.
We support the changes which affect the scope of consent and its applicability to all health care providers involved in the plan of treatment.
I will not read the summary, which is simply a collection of the recommendations or suggestions that I've already listed, but I'd be happy to answer questions, as would my colleague Dr Harrison.
The Vice-Chair: Thank you, Dr Goldbloom. We'll start off with the Liberal caucus. We'll be looking at about four minutes per caucus.
Mr Grandmaître: Doctor, you would support no-age consent, and you did confess to us that it was impossible to abide by the present legislation to the letter. How would this no-age consent facilitate your work?
Dr Goldbloom: First, just to clarify, my comment about not abiding by the letter of the law was related to one specific aspect, the family member's statement that you are speaking on behalf of the baby that you're holding.
As far as no age of consent, what that allows us to do, and in fact we have always functioned this way, is to recognize maturity when appropriate. It allows us to say to that 14-year-old, who either is very mature and appropriate or who may even be independent of his or her family, we recognize that individual's independence. It in no way prevents us from involving the family when it is appropriate to do so. In fact, the majority of teens we speak to want their family involved and we're happy to do that. It's in those circumstances when they don't and when family involvement may be an obstacle to care that we need that opportunity.
If I can just relate one brief anecdote about that. When the original consent-to-treatment legislation was coming in, I participated in a radio open-line show on this topic and was answering questions. One of the issues that came up was, if a teenager was part of a program like a measles vaccination program in school and if he refused to participate, what was the parent's situation then, because teenagers were regarded as independent? It was interesting that several teens called in and they all said: "There's no way I would ever allow anyone to give me a needle. Therefore, I'd want my parents to make the decision." In other words, on the one hand they're independent on some things; on the other hand they recognize that there are certain things they want their parents to decide for them. I think this allows us that flexibility.
Mr Grandmaître: Thank you.
The Vice-Chair: We'll move now to the NDP caucus. Mr Marchese.
Mr Marchese: Thank you for your presentation. I have, hopefully, two quick questions and my colleague has some too.
With respect to substitutes no longer having to make a statement, the Psychiatric Patient Advocate Office agrees with substitutes having to make a statement. I think it's done so as to protect and respect that particular individual who may not have the kind of family that we would all love. It is done as a way of making sure that those people who make the substitute decision understand their obligation. So they make a statement and they talk about their relationship. Number two says that the relative has no reason to believe that the patient, when capable, would have objected to the relative acting as an SDM and that there's not a higher-ranking relative who is available.
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Is that too onerous, do you think, as a way of protecting that individual and as a way of having that other individual understand their obligation? Is this too onerous?
Dr Goldbloom: My feeling is that it becomes onerous if it's applied across the board of all health care encounters. I would add that we still, as an institution or as an individual health care provider, are obliged to be comfortable, if you will, that the person who is speaking is the appropriate person, as we've always done -- if a parent signs a consent to have the child examined and so forth.
What we objected to was the formalization, this requirement of making a statement at every single encounter, either verbally or in writing, having to sign this statement which in actual health care practice, in routine practice, became impractical. I don't think we are for a moment relieved of the obligation to ensure that the person who is speaking on behalf of a patient is authorized to do so.
I don't know if you want to add anything to it.
Dr Christine Harrison: I would like to.
First, I guess there are other parts of the Health Care Consent Act which distinguish between psychiatric settings and non-psychiatric settings and perhaps that could be a distinction that would be made where it might be required in one and not the other.
The other thing is, the wording that you quoted indicates what the problem was, that a person has to make a statement that the person would not have objected to them making the statement when they were capable. To say that to a parent of a newborn just makes them go: "What? What are you talking about?" It was very confusing and distressing for some of them.
The Vice-Chair: We have time for one more quick question from Ms Boyd.
Mrs Boyd: I want to tell you how delighted I am that you've pointed out the problem around the children's aid society and the family court and their jurisdiction. I certainly hope that we can incorporate your suggestion into any changes on the rights advice issue. I understand the problem as you see it and really appreciate what that portends.
You made a comment that it would be in any case incumbent upon the professional to make sure that the person knew their rights. We've been pressing professionals who have come before the committee, including the College of Physicians and Surgeons, as to how you would accomplish ensuring that was an obligation on the part of the physician or in some cases the nurse, any of the other registered helping professions. I wonder if you could tell us how, from a consumer point of view, there could be some real sense of confidence that in fact that obligation would be carried out and if it wasn't carried out that there was some sanction.
Dr Goldbloom: Maybe I can make a comment and my colleague Dr Harrison may wish to as well. I think first of all, ethically, we all feel that patients should be informed. So if a decision is made not to recognize an individual as being capable, particularly a teenager, for example, and that we are going to turn to someone else for a decision, I think it is incumbent upon of all of us ethically to be able to notify that individual.
In terms of outlining for the individual a list of all of the rights and options, whether that is the obligation of every care provider I'm not sure about. When people have objected or protested or disagreed with the caregiver, it seems to me that people are quick to find out about options, as in the increasing numbers of lawsuits and other protests and so forth.
There are also mechanisms that hospitals are starting to provide, increasingly. We have a patient representative office in our hospital, and that individual really serves as a patient advocate. Many large hospitals have seen this as part of their mission and something that they should provide. I think that the provision and the support for that kind of information is far more sensitively done and more practically done within those kinds of arrangements than through a rather blunt instrument of legislation.
The Vice-Chair: We're going to move to the government side. I've got two speakers here, Mr Tilson and Ms Johns. Mr Tilson, do you want to go first?
Mr Tilson: I have one question and then Ms Johns has a subsequent question.
I found your report very concise and very thoughtful, but the one comment that I'd like you to elaborate on has to do with the issue as to who should be the substitute decision-maker of last resort when there isn't a parent available or capable to make decisions for that child or young person. You have recommended that your preference would be the children's aid society, and you've given an example of a problem, as opposed to the official guardian and public trustee. It's an interesting suggestion, and I'd like you to elaborate as to how you reached that conclusion.
Dr Goldbloom: I think this is based on our experience and perhaps on a recognition of the children's aid societies' familiarity because they are delegated by law to act in the interests of children in need of protection. They usually have the infrastructure, the staff and the experience of dealing with children in these situations that we feel that they can handle them efficiently and well, so that under existing arrangements that seems to us to be the most appropriate body.
If somehow the public guardian was prepared to take this on and become acquainted with all this and somehow reorganize, I'm not saying that there couldn't be another option, but certainly our experience has been that the children's aid society is very experienced with this and deals with it efficiently and well. Christine, do you want to add anything?
Dr Harrison: No.
Dr Goldbloom: That was the basis for it.
Mr Tilson: I understand that. Thank you.
Mrs Johns: Under the Health Care Consent Act, one of the things that has happened is that low-risk treatments have been removed from the auspices, the control of the act. We've had a lot of comments about that over the last two days. Would you comment on why you didn't comment on it?
Dr Harrison: Some of us did.
Dr Goldbloom: I think, in fairness, some of the feedback that I had from some of the professionals in our organization questioned whether the law was giving too much leeway to professionals in making that statement. I guess this was an issue where there was a lot of discussion.
My own feeling, again, is that this is something that is better handled by professional guidelines, professional ethics, than it is by, as I say, a relatively blunt instrument like legislation, because almost everything that we do is subject to some form of interpretation, a decision about what's risky, what's not risky and so forth.
If a child comes into the emergency room with a cut and is waiting to be assessed and treated by the caregivers, is it reasonable for the nurse to provide a little dressing, a piece of gauze over it, or does that become something for which a consent has to be obtained? Can Tylenol be given to the child who has a fever and is waiting to be examined to determine the cause?
Those kinds of decisions have always been within the scope of professional judgement and professional practice. We've had to rely on them in the past. When people have felt that we've exceeded them, the College of Physicians and Surgeons comes into play with its guidelines, or the civil code comes into play. I think that there are instruments available to deal with abuse, but I don't think it belongs here.
Dr Harrison: I'd like to say something about that. Dr Goldbloom and I had to decide what we were going to talk about and what we weren't going to talk about, and that was just one thing that we had discussed as an issue and felt we wouldn't have time to discuss. But I'm glad you brought it up, and I'll just maybe pass on a couple of comments from some of the groups within the hospital and also other bioethicists whom I work with.
Two comments: One is that I'm not a lawyer but we really don't understand the need to specify some exceptions to treatment at all in the legislation, because my understanding is that one still has to get consent under the common law. In the Consent to Treatment Act you would have to look at rights advice and so on, so there would be a reason for making some exceptions to treatment, but we don't really understand the distinction in the Health Care Consent Act.
The other thing is, as a sort of exercise when I was going around discussing the new Health Care Consent Act with people in the hospital, I asked them to give me some examples of things that they thought would be a treatment of little or no risk of harm. I got the whole range of responses from people: Tylenol, first aid. One paediatrician said a lumbar puncture, which is a spinal tap, in some circumstances might be something of little or no risk of harm. At one session that I went to, a physician and a nurse both agreed that this might allow a surgeon who was in the middle of surgery and who found something he wasn't expecting to find, to take care of that problem while he was in there. I think that isn't what's meant in the law, and maybe if that phrase is going to be included it needs some word changing.
The Vice-Chair: Mr Guzzo, I apologize. We're not going to have any time for any more questions. Dr Harrison and Dr Goldbloom, I want to thank you very much on behalf of the committee for your presentation. We will be adjourned until 1 o'clock.
The committee recessed from 1210 to 1307.
GEORGE GRAHAM MAINER
The Chair: It is now 1:07 and I would like to call the committee to order. Our first presenter is Mr George Mainer. We've discussed the matter. You have one half-hour, including questions. If you would proceed.
Mr George Graham Mainer: I will try to read quickly so that the entire thing will be done, and then take questions.
This is a case study of medical ethic, not in relation to whether a medical problem is caused by the digestive system or the vagus nerve, not that at all, but ethic in the broadest sense.
Here are some notes dealing with two individuals primarily concerned, Joram G. and Chris Horne. We deal with each of these in turn.
(1) Joram G.: A prominent lawyer, Mr G was charged at the end of February 1994, with a few dozen others, with being a ring of narcotics distributors. This is called the "G ring" hereunder.
Covering the period July 8, 1991, to October 5, 1995, some 221 weeks, three subsets are:
(a) July 8, 1991, to February 28, 1994, 138 weeks, in which the most powerful criminal forces, cloaked in the borrowed robes of law and order, used the manifold instrumentalities of Canada's federal, provincial and municipal levels to harass me; and
(b) March 1, 1994, to a day in March 1995, during which my most innocent comments were silenced by claims that I was trying to deprive Mr G of a fair trial; and
(c) April 1995 to February 7, 1996, today, in which I have endeavoured to articulate this report despite vicious attacks.
I was the person who made the connection between Joram G. and the Franklin Group -- called "FG" hereafter -- in this way:
About 1325 hours, Wednesday, July 10, 1991, I noticed that my above-named telephone line -- 416-972-0975 -- had 365-1968 as the last number to call. I traced this call through Bell Telephone. At 365-1968, a lady answered with "Franklin Group" twice, because I asked her to repeat it, and she told me that since it was Mr G's private line, it must have been Mr G who wanted to speak to me. She gave me Mr G's number as 361-3178. Dialling this number gave me access to his answering machine, which gave me his number as 365-1967. The traced call was to FG's private line at 365-1968, though the FG listing is 365-1966.
From the Law Society of Upper Canada, I learned that G and Associates at 50 Richmond Street East, Suite 500, Toronto, M5C 1N7 had telephone number 365-1966, so that the link to FG was based on a wrong answer at the traced number 365-1968.
At length, I reached a stranger to me, Joram G, who did not realize that I knew his connection to FG during contact by telephone early in the afternoon of July 10, 1991. He told me that I "go around photographing people," and invited me to go to his office at 50 Richmond Street East and photograph everyone there. He also undertook to find out who had phoned me and get back to me as soon as possible, taking my name and phone number. He volunteered that the person who answered my phone call was "Cindy."
I did not reply to his question, "What do you do?"
While Joram G was investigating who telephoned me from 365-1968, I sorted out the 1991 -- not 1995 -- numbers, and if I may just have your permission to skip down to, on the next page: "To this day I do not know who phoned me."
It is evident that Cindy gave me the connection, not evident from the 1991 phone book, between G and FG.
Cindy also focused attention of the G ring on George Graham Mainer, the undersigned, as the other side of the coin who in July 1991 was aware only that a prominent lawyer had a very strong animus against him. My initial impression was written down on July 11, 1991: "My photos of faces on street must hurt the Mossad, hence Joram G's telephone call from the Franklin Group, 365-1968, which was the identity given by the person Cindy (says Joram) who answered the phone who said `Franklin Group' and who identified Jay G as the person who'd have done it."
I just wish to point out that all of that is incorrect because of the secrecy involved.
My allusion to the Israeli intelligence Mossad is probably based on my having photographed the man whom I have for 20 years assumed to be a KGB operative on July 8, 1991, along with 35 other snapshots taken to Black's on July 10 and picked up shortly after noon on July 10, 1991. These street photographs were quite innocent. For example, on July 12, 1991, I photographed an accident on Bathurst just south of the 401 between Honest Ed's Lincoln Town Car and a station wagon that was making a left turn. I gave my only prints of these photos to the doorman at 33 Rosehill, Edgar, whose true name I learned from his obituary.
In sharp contrast to my innocent behaviours, there were several menacing interventions.
I'll just skip down to a photograph taken of me. I now think that Joram G had a photograph of me from July 14, 1991, but I have not been able to obtain a copy of this photo despite several requests to Mr Wilson, whom I do not otherwise know. But in 1991, I had a very positive opinion of that young couple.
Several weeks later, my Spanish ex-psychiatrist put himself in the G ring when he described himself as "with Joram G," while I explained to him how one delineates a structure and forces it to function: delineating a structure and forcing it to function. Please see the third paragraph of Staff Inspector L. A. Bruce's letter to me dated January 29, 1996, for a textbook example of the staff inspector delineating the structure.
This structure functioned to portray my simple itinerary as a criminal act. Then the psychiatric structure functioned to cover up identities of the true criminals. The new doorman replacing the late Edgar Vaivers, John Hunter, acting as my voluntary informant, had given me the information about the licence plate of a bearded man who arrived in one set of clothes and left in another after about an hour's visit to Ms Knox's apartment. This informant and I shared a desire to identify sources of radiation.
Please bear with me. It may seem to be superficially funny but it really isn't. It's a very meaty case.
The structure of neighbours, though at various times floor captains of tenants' associations dominated by Chris Horne are classed in the G ring if the ethic is especially feculent, partaking more of the cocaine trafficker than the thief. It's a judgement call. Their advent, uninvited, into my life so soon after my skirmish with Mr G forces me to label the structure with his name. Dr P, Ms Nowell and Ms Knox are members of several structures that have adverse effect on me.
On Wednesday, July 17, 1991, a neighbour, Ms Knox of 2602, mentioned a circular letter about security problems in our residential complex of 629 apartments. The bottom line is that they functioned as a structure with Ms Nowell and it implies that both are members of the G ring.
In subsequent years, attacks using gas and radiation emanated primarily from 2602. I noted very many distinct incidents during the period. On occasion, after I got my peep-hole, I caught Ms Knox and on other occasions Malka Rosenberg (Malro Co, in whose apartment I met Ian Scott), playing with my letter slot, sometimes accompanied by noxious odours.
In order to pinpoint radiation, I bought a detector from Spy Tech and used markers to circle the spots on the walls with 2602, where on March 25, 1994, very powerful radiation was detected using this radiation detector. The date is thought to correlate with events in the life of Joram G or Chris Horne.
Because I was getting nowhere with my complaints to my landlord, I started to phone Ms Knox's employer, first at Sick Children's Hospital, then at Mount Sinai. They were sympathetic but ineffectual. On August 22, 1995, I phoned 911 just prior to 2200 hours, with this result obtained from the Metropolitan Toronto Police Force:
"Operator: Emergencies, 51 and 53 division.
"Me: Yes, I've just been hit with, zapped with some kind of deliberate electronic assault from, I believe, a neighbour."
Please let me skip down; it's quite tautologist. You have it before you.
She says, in a very insulting tone -- I have the tape if you want to hear it. In a very insulting tone, she says, "Are these aliens?" In other words: "You are an inferior. You, Mr Mainer, are an inferior, so I'm saying to you, is it possible that these are aliens, some kind of mystic interpretation?"
On October 5, 1995, I wrote and delivered by hand letters to some 28 addressees. My itinerary is shown below and cannot possibly be described as following an even now unidentified friend of Ms Knox, though I think he is the psychiatrist Peter G. S. Would you please rub out T-E-N-N. Please rub out his whole name so he is described as Peter G. S. I didn't want -- that's the result of a -- let me continue.
Here is my itinerary on October 5: 12:30 to the Canadian Civil Liberties Association; 1300 to City Hall; 1320 to Chief Boothby and other people at 40 College; 1330 to the College of Physicians and Surgeons of Ontario; 1340 Queen's Park, one of my few replies. I received only two replies. One was from the Premier of Ontario. My hat's off to him for replying to mail that other people simply dismiss as ridiculous or criminal. Then 1400, Mount Sinai Hospital, Eva for Dr B. Smith plus "one unplanned." "One unplanned" is the man that we have been trying to identify. He is the man that I'm accused -- that I'm cautioned not to criminally harass. Here's who have tried to find out: the police, Mount Sinai Hospital. No one can find out his identify. I am going to suggest one to you. But to continue, at 1425 to Metro Hall and at 1435 to the Globe and Mail.
I tried to learn the identity of "one unplanned" from Eva, whom I had asked on October 5 to remember him. So there I am up in Mount Sinai, having been given the runaround as to neonatal, perinatal, newly born etc. I finally find a Dr Smith, at least his Eva, and this man then intervenes on me. He jumps on me, so to speak, verbally. So I say to Eva, "This man" -- I asked him: "Who are you? Please identify yourself." He refused. So I said to Eva, "Eva, will you please remember this man?" And so that's what that sentence is about. I had asked her on October 5 to remember him. These are the names mentioned at 1400 hours of the above itinerary, just to help you interpret that table. Eva told the third party, the third party that I had appealed to to help identify this man, the police having failed, the Mount Sinai Hospital having failed, so I asked a third party, Miss RW, I hope you won't ask me to identify her, that the man -- Eva told the third party that the man was not bearded and sounded like a lawyer.
This RW, who is very familiar with medical investigations, phones Eva and says, "Eva, remember the man who told you to remember the bearded man?" I'm sorry. She phones and asks for the identity of the bearded man. She asks for the identity of the bearded man and Eva says, "Well, he didn't have a beard and he sounded like a lawyer." Eva had identified me, not the bearded man.
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The third party told me from her experience this meant that the black-bearded "one unplanned" was either an important doctor whom Eva feared could have her dismissed or in fact her boss in the department. In short, an implied intimidation kept his identity secret in the hope that she will not be fired. Ms RW is a Rachel White, the investigations department of the College of Physicians and Surgeons of Ontario, and she told me that she could get into a lot of trouble if she did this. So I hope you'll respect her. In short, an implied intimidation kept his identity secret.
The College of Physicians and Surgeons, called Coll of P&S in the above table at 1330 hours, will accept a complaint about a doctor only if his name is used. So there is the basic conundrum. Ms White says to me, "We will certainly accept your complaint about this person, the black-bearded man, provided you give us his name." I say to her, "I can't get his name from the police, I can't get his name from the Ontario College of Physicians and Surgeons, I can't get his name from Mount Sinai Hospital, so how can I make a complaint?" and she says she's bound by the rules. So I say, "I appeal to you, will you perhaps find out by calling Eva?" whom I had asked to remember who this man was. She then does this, and Eva has identified to her me, not the black-bearded man at all.
We're dealing here with the medical ethic. I'm sorry to say that, but we are dealing here with the ethic of doctors who make decisions under Bill 19 and under the legislation that it wishes to replace. They substitute decisions; they sure do. This is a case study of their ethic. Please take it as that. Look through the verbiage.
So the College of Physicians and Surgeons will accept a complaint about a doctor only if his name is used. Consequently, shortly after 9 o'clock on November 13, 1995, I telephoned the president of Mount Sinai and explained events and asked him if I could come to his office and go through his book of staff pictures so that I could pick out "one unplanned." He said he didn't have such a book but that he would none the less try to identify him.
I should have left it there, but instead I put it into a letter and took it to him. We agreed in the telephone conversation that Eva would be a good source of information and would surely feel secure with the president of the hospital. About three hours later I placed a letter into the hand of the president of Mount Sinai with the request that he stamp it "Confidential." He mentioned that his investigation would take time, and it certainly has. I have not received a reply to date.
Meanwhile, the structure of two psychiatrists and my nursing neighbour -- the nursing neighbour is the person mentioned in the 911 call when I say that the radiation is coming from a neighbour. In my 911 call Ms Knox is the neighbour to whom I allude. So the structure, two psychiatrists, one P, the other S, and the nurse functioned to criminalize my tedious complaints -- to them tedious complaints -- about radiation and gas paid for possibly by conversion of the hospital's resources.
Indeed, in one of my phone calls in March or April to Dr Smith, he never replied to anything. I did mention, "Where would she get these rare and unusual gases except from your department or your hospital?" So the conversion there is a sort of conversion to their own use.
I truly believe that I had several lawful excuses to deliver my letter to Dr Smith, Ms Knox's boss at Mount Sinai, and that "one unplanned" had no lawful excuse to interfere with me. Nobody in Mount Sinai can identify him, it seems, nobody at all, not even the president. He doesn't have a picture or anything.
Ms Knox has induced her friends to violate one of the fundamental principles of investigation, namely, it is an abuse of process where one attempts to use the criminal courts and police in the manner described. But it constitutes a further voluntary, on Ms Knox's part, indicia that she is willing to manipulate resources that belong to the public. Knox fears detection. It is I who fear for my safety.
Turning now to the other one, thank you for allowing me to speak freely to you on the ethic of medic. One often hears from medics about problems created by anybody's legislation on health care -- Liberal, Conservative, NDP: they complain about all legislation on health care -- but one rarely has a chance to observe the ethic of the medics making decisions regarding the health of their patients. I think your amendments in part III of Bill 19 will help.
A case study is presented to you here that starkly reveals the manipulative character of medical decision-making in a sense that includes making decisions about mental health in a context of destructive secrecy.
I display today only what I've been able to glean from medics myself, with no replies to my letters, despite verbal assurance on 13 November 1995. If it is incomplete, a destructive secrecy must be blamed. Please make it obligatory to inform patients in writing, not just verbally in consultations in which the medic can claim his lies are part of treatment. Something in writing could be shown to disinterested people.
I was told on two different occasions by my ex-psychiatrist that the radiation of which I complained was punishment on me for experiments done by an unrelated organization, the CIA, upon the wife of an NDP MP from Winnipeg a generation ago. How does this contribute to cure? On another occasion he told me that my future subjects were using radiation to control my mind. They are known for this kind of manipulation. Strange that I should be called upon to explain these when I did not create them. Both are now claimed to be false memories of my own creation. Were these given to me in writing, they could be judged now.
Attached are these conflicting statements from police, because I complained after Ms Knox had misused the criminal law to prevent me from complaining to her employers. I was phoned by this constable and it was investigated. It was turned from an investigation into an inquiry and then it was changed again.
(1) Public complaint form 6 with accompanying letter dated 11 December 1995 from Naseema Singh of central region's office of the police complaints commissioner, and he says:
"On November 21, 1995, that service" -- the Toronto service -- "requested that your complaint be classified as an inquiry rather than as a complaint of police misconduct. Attached please find a copy of that request form. You will note that consent has been given by the police to classify this matter as an inquiry."
The attached form 6 has consent "For the following reasons." These are the words of the investigating detective recommending that it go to one step beyond investigation, namely, board of inquiry: "The preliminary investigation indicates that the subject officer was in the lawful execution of his duties." That's the one that Ms Knox deceived, according to him. "There is conduct that could constitute misconduct."
The misconduct of the policeman is claimed by the investigating detective, and on the basis of the investigating detective's assertion that there is a basis for misconduct, the investigation is upgraded to an inquiry. Contrast this to Staff Inspector Bruce's final paragraph. You have that in your hands:
"There is no evidence of misconduct on the part of Constable Redigonda. Therefore, pursuant to section 81 of the Police Services Act, your complaint has been reclassified as an inquiry." I don't understand that. It's in the letter. Please take the letter. The letter is right there in front of you, the entire letter.
Note here how my complaint about fabrication of evidence -- I requested that he be charged under section 137 of the Criminal Code of Canada -- by a police constable has not been passed on to lying medics. They won't even identify him. But it has been passed back to me, which itself is an act of criminal harassment of me by Mount Sinai Hospital, where I was repeatedly misinformed about the location of Dr Smith. "Go to neonatal, go to perinatal, go to this, that and the other." Then that was interpreted as following this man, who has apparently not even a ghost there. He has simply disappeared.
I was repeatedly misinformed about the location of Dr Smith, and then fell back upon Ms Knox's employer. They give a particular spin to that. For example, in Bruce's letter, "You again approached this person on another floor of the hospital." I was trying to deliver a letter to Dr Smith and was finally at his desk, manned by Eva, at which this black-bearded man imposed himself on me. I was reminded of Joram G's nearly hysterical question to me over the telephone in July 1991, "Who's your sergeant?" which communicated to me that he owned the sergeants and perhaps higher-ups. This question came to me from two other sources.
My complaint to the 911 operator on August 22 has never been investigated. The criminal element has introduced the red herring and the bloodhounds have enthusiastically pursued it. It is astonishing that Black Beard has not been positively identified by the police or the hospital, yet he must have shaped the bloodhounds' chase, and that's the medical ethic. I doubt if Black Beard is even a friend of Ms Knox, but she is the only fully identified player -- the chain: John Hunter, the doorman; Black Beard, who seems to be a medic making decisions that could endanger members of the public, explicitly me.
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Secrecy in the use of such expressions as "acquaintance" in Bruce's letter as opposed to "friend" in public complaint form 1, so in public complaint form 1 the constable had said that I was criminally harassing a friend; then the investigation revealed, downgrades that to an acquaintance; next it will be just an imaginary event. This substitution is very important, because it obscures the identity of "one unplanned," the black-bearded man who does not belong to Mount Sinai because nobody there has identified him. It is left to a major suspect in a totally distinct case -- radiation on me, itself a beautiful opportunity for obscuration by manipulative people with a knowledge of paranoia -- to change the identity of her friend or acquaintance as well as these labels.
Medics' ethic is shown at every turn in this case. Do not let this case study be obscured by verbiage. Comment is that the spirit of Bill 19, parts III and IV, though a vast improvement on existing law, ought to be much stronger anti-fraud by all personnel: family, legal and even medical. Part VI of schedule A is also very commendable, but it could be made stronger by substituting a verb other than "knowing," such as "suspecting" it is untrue. After all, you pioneered the privative clause in the 1940s. Why not innovate again in the 1990s?
This law should assume that people are being put away in psychiatric institutions in order to prevent embarrassment to family, for example, when a dozen or so of the relatives of Lady Elizabeth Bowes-Lyon, now the Queen Mother, were confined as mentally defective in order to prevent embarrassment to the royal family.
The presumption ought to be that someone is being murdered for gain. This is especially important in an age of assisted suicide. Recall that even the physician of George V states in his memoirs that Edward VIII authorized what we would today call dying with dignity, since nobody stands up and shouts the actual truth at the time.
We now come to the second part: Christopher Horne, the prominent Toronto financial consultant. Mr Horne has an extensive collection of antiques, Inuit sculptures and 18 paintings sought since 20 October 1994 by the receiver appointed by the Honourable Mr Justice Spence, Coopers and Lybrand, where Joel Price told me in January 1995 that he had all the paintings. They now confess that they're still looking for 18.
The order of 20 October 1994 contains a provision for judicial review of the diligence of plaintiff RBC and receiver. The order of 20 October 1994 was sealed by the Honourable Mr Justice Ferrier. In an order dated 31 January 1995 Mr Justice Spence explained the reason why the order ought to be made public again. Those who keep the files at 145 Queen Street West lost the order, but luckily a copy was found in my private files. I took it down to her and gave it to her, saying, "Don't lose it again."
On 25 November 1994, Coopers and Lybrand was appointed receiver in bankruptcy, as opposed to the other one, and have reported lack of cooperation from Mr Horne, about whom an article will appear in the March 1996 issue of Toronto Life. There are exceptional articles often written by Kimberley Noble.
Although the act set out in schedule A to Bill 19 has cured a perception of overemphasis on bureaucracy in the emergency room, problems that arise are much more subtle as in the Corbett case, October 1991 to October 1994, about which there is an article by McNish and Noble in the Globe and Mail's Report on Business for 20 November 1995.
I've spoken to the priest who visited Frank Corbett once a week to give him communion and to the doctor who noted that Frank Corbett did not know how to write a cheque to access his large bank account. Father McGill mentioned two Hornes, and perhaps that's the dilemma we're on now.
The Chair: Thank you, Mr Mainer, on behalf of the committee. Unfortunately, there is no time for questions or I'm sure a number of members would have them. But I can assure you your report will receive the attention it deserves and I thank you very much for attending today.
Mr Mainer: Thank you very much. I owe a great deal to this Legislature.
ONTARIO ASSOCIATION OF PROFESSIONAL SOCIAL WORKERS
The Chair: Our next presenter is the Ontario Association of Professional Social Workers. I invite them to come up to the desk. I would ask each of you who is to take part in the presentation to identify yourselves for the purpose of Hansard and I would remind you that we have one half-hour allocated to both your presentation and questions, and you can use the time as you see fit.
Mr Dan Andreae: Thank you. My name is Dan Andreae. I'm the president of the Ontario Association of Social Workers and I'll be presenting the report today. There are 11 recommendations the profession has to give you today. I'm joined by two experts, two colleagues who will be able to answer your specific questions in this area, and so if I could ask you to introduce yourself, Doris.
Ms Doris Guyatt: I'm Doris Guyatt and I'm a consultant now. I do training on this area of legislation. I have been employed by the Ministry of Community and Social Services and Ministry of Health for the past 22 years and I retired in the spring of last year. So I feel I have a stake in what's happening here because I spent literally the last four years of my life working on this legislation and I want to ensure that we preserve the best of what was done before, although I think that what has happened has been very helpful in your new legislation.
Ms Cathy Clothier: I'm Cathy Clothier. I'm the director of social work and discharge planning at the Riverdale Hospital and I have 13 years of health care experience.
Mr Andreae: First of all, to the credit of previous governments who worked hard on this to bring us to the point that we're moving ahead with legislation in this sensitive area, we're here to help facilitate that process with you.
You have the text in front of you of our recommendations, so what I propose to do is -- we could spend half an hour just me reading this and you get tired of my voice, and we don't want that to happen. What I'm going to do is to highlight some of the key recommendations that we'd like to make to you and then have time for us to answer questions specifically you may have on the issue as we go along.
The Ontario Association of Social Workers welcomes the opportunity to offer our perspective on Bill 19. Historically, the social work profession has advocated for the decision-making of the vulnerable adult. The OASW, as I'll refer to us, is a bilingual membership organization that was incorporated in 1964. It is one of 10 provincial associations of social workers belonging to the Canadian Association of Social Workers, which in turn is a member of the 54-nation International Federation of Social Workers.
We have 17 local branches and three chapters across Ontario and we have approximately 3,100 members. The practising members are social workers with university degrees in social work at the baccalaureate, masters and doctorate levels who, in addition to direct service, practise at the policy, program and community levels.
The social work profession has mechanisms to ensure accountability in three specific forms: (1) membership in the Ontario College of Certified Social Workers, which was established in 1982 and operates under the structures common to all professional colleges with stringent membership requirements, procedures addressing complaints from the public about social workers and disciplining members who violate professional ethics or competencies; (2) structures provided within agencies/organizations, for example, procedures and guidelines, quality assurance programs etc; and (3) contractual agreements provided with the non-publicly funded services, for example, employee assistance programs.
Social workers are on the verge of attaining their long-standing goal of legislation to regulate the profession in Ontario. Two letters dated October 30, 1995, and January 22, 1996, received from the Premier to this effect, have confirmed that government will move forward to enact social work regulation. We're pleased about that.
The relationship of Bill 19 to social work: What I can say is that many social workers are employed in health care settings -- about 35% would be probably -- and as part of the team of health care providers and are frequently called upon to consult on issues related to mental capacity, consent, family functioning and the identification of substitute decision-makers.
As well, social workers take primary responsibility in health facilities for discharge planning, including planning for admission to long-term-care facilities. They also form the second largest proportion of those trained as capacity assessors under the Substitute Decisions Act, second only to psychologists, which surprises some people, but it's true.
Traditionally, social workers have provided advocacy services, both individual and systemic, for patients and residents of health and other residential institutions. For all these reasons and because of their broader expertise with the more vulnerable populations in our society, children, those with disabilities, the developmentally handicapped, the mentally ill, the aged and families in distress, whom we work with every day. We're vitally concerned about the changes, therefore, in legislation being proposed in Bill 19.
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In summary, in terms of general comments, the profession is supportive of the amendments and new sections, including the streamlining of operational aspects of the act and facilitating implementation -- assist families in taking advantage of statutory guardianship and powers of attorney to act on behalf of their incapable members; permit the setting of standards and the regulation of fees for capacity assessors; provide clearer definitions of treatment, treatment plans, and what constitutes a relative for the purpose of substitute consent; clarify the distinction between treatment and personal care services and the application of substitute consent provisions to both; clarify the issues around the age of consent and, finally, introduce a new system for admission to long-term-care facilities that provides protection for the elderly. On page 4 there's more.
We're also concerned -- the list goes on: the removal of checks and balances that provide protection for the most vulnerable; the watering down of the right to information when the right to make one's own decisions about property, personal care, treatment and placement is at issue; the substitution of volunteers for trained staff to give rights advice; the greater decision-making power given to health professionals; the complete removal of advice about the process of appealing a decision regarding capacity to consent to treatment and, finally, the lack of protection in particular for persons without families or with abusive families.
If we look then at specific issues, on page 5 of our document, we have in relation to witnesses a particular recommendation. It follows on page 6. The OASW, the profession, recommends that the Attorney General reconsider the deletion of the requirement that witnesses to the granting of a power of attorney have no reason to believe the grantor is incapable of giving a power of attorney for property or personal care and that some other way be found to facilitate the witnessing of these documents.
Our second recommendation under Compensation for Guardians, reads that the OASW, the profession, recommends that there be no financial compensation for services related to the provision of guardianship of the person or the exercise of a power of attorney for personal care.
Number three is a key area, because social workers have a lot of experience regarding volunteers and volunteering in institutions. Reading this out a bit more specifically, Bill 19 authorizes the public guardian and trustee to appoint volunteers to provide advice and assistance under the SDA.
Although we believe that volunteers can contribute greatly to the protection of the rights of vulnerable adults, nevertheless, we do not think they can fully replace trained, paid staff. Their contribution is limited by the fact that they may go south in the winter -- lucky them -- or north in the summer. They get married, have children, change jobs, move their homes, and for other reasons become unavailable. They serve a tremendous purpose in many, many ways; excellent volunteers, but not to take the place of trained staff.
However, if a volunteer program is to be implemented, we strongly recommend that it have provision for paid coordinators, appropriate training, adequate supervision, payment for expenses involved and significant recognition of the volunteer's services. This will help to ensure a high quality of those services.
So our recommendation in this area is that OASW recommends that a volunteer program for rights advice be adequately staffed and that provision be made for appropriate training, adequate supervision, payment of volunteer expenses and a recognition of their services.
The next, number four, is around capacity assessments. As I mentioned at the outset, social workers comprise the second-largest group of capacity assessors in the province, next to psychologists. So it's an important area for us.
Social workers are currently, as I mentioned, the second-largest group. This role for social workers has the full support of the profession's regulatory body, the Ontario College of Certified Social Workers. Hence, we endorse the amendments to this bill, clause 90(e) of the SDA, and authorize the prescribing in regulations of standards for the performance of assessments and the regulating of fees for such assessments.
In many cases, the potential expense has been an obstacle to appropriate referrals for assessments, particularly for individuals without family or funds. Current policy of the capacity assessment office is that only individuals, and not institutions, can apply for financial assistance to cover the cost of an assessment in cases of hardship.
Therefore, recommendation four from us is: We recommend that institutions and service provider organizations be allowed to apply to the fund which exists in the capacity assessment office on behalf of individuals without family or funds who require assessments.
Further, OASW recommends that assessments be subject to quality assurance reviews to protect those assessed and that a user-friendly range of fees be established.
In terms of number five, powers of attorney for persons without families, I'll simply read our recommendation on that, on page 10: OASW recommends that the PGT change its current policy and permit individuals without family or friends to name the PGT as attorney for personal care.
In terms of number six, removal of the validation process, on page 11: OASW recommends that the government inform the public that the rules for powers of attorney for personal care have changed and, in doing so, encourage the public to review its current powers of attorney in view of those changes, so that they may build in the requirements for a capacity assessment if they so wish.
Number seven, I'll read again generally on page 12 of our submission to you, and it reads, and this of course is in relation to consent to treatment plan: OASW recommends the inclusion of regulations that require the input of all health team members to the preparation of such a treatment plan and the determination of capacity to consent to that plan.
If we look at number eight, the issue of rights advice, emergency department visits -- we're getting through them -- I will read our eighth recommendation here: OASW recommends that ways be found to sustain the improved sensitivity of health care workers in emergency departments to special needs and rights of patients with borderline capabilities through the use of volunteer rights advisers and educational programs.
Number nine is a particularly important one for social work, so I'm going to read that out more specifically. It involves rights information, finding of incapacity and the review process. The existing law, the Consent to Treatment Act, provided extensive instructions to health practitioners in regard to obtaining informed consent to treatment and informing incapable patients of the right to rights advice and to appeal to the Consent and Capacity Review Board if they objected to a finding of incapacity to consent.
The new act retains the instructions about obtaining informed consent -- see sections 9, 10, 11, 12 and 13 -- and completely removes the requirement for the practitioner to inform the patient of a finding of incapacity and to provide information about their right to a review of the finding.
While the previous act was overly legalistic and bureaucratic in its approach and the process of informing the patient inhumane, in the view of the social workers, however, the new process, which absolves the practitioner of any requirement to tell the patient in a kind way that someone else will be making decisions on his or her behalf, is equally disrespectful of the rights and the dignity of the individual and places too much decision-making power in the hands of health practitioners.
Therefore, our recommendation nine in this regard states: OASW recommends that there be a requirement for health practitioners to notify patients whom they find incapable of decisions concerning treatment in an informal and kind way and that they will be seeking the assistance of a substitute decider on their behalf. As well, they should inform them that they have the right to have this decision reviewed.
Number 10, evaluators under the Health Care Consent Act, is an important piece for us and it reads as such: Parts III and IV of the Health Care Consent Act which deal with consent to admissions to health care facilities and consent to personal assistance plans authorize a substitute to give consent to both admission and to a personal assistance plan if the person is found by an evaluator to be incapable of giving consent.
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In the definitions of part I, section 2, an "evaluator" is defined as a health practitioner who is a member of one of a number of colleges, including audiologists, speech-language pathologists, nurses, occupational therapists, physicians and surgeons, physiotherapists and psychologists. The definition does not include social workers, although it does permit other categories of persons to be prescribed by regulation.
In that social workers are highly involved currently in assessing the capacity of individuals who may need decisions to be made on their behalf about admissions to health care facilities and in helping to develop personal assistance plans in such facilities, we believe the legislation should include in the definition of "evaluator" a member of the Ontario College of Certified Social Workers.
Recommendation 10 therefore: The OASW recommends that the definition of "evaluator" in part I, section 2 of the HCCA include a member of the Ontario College of Certified Social Workers.
Finally, our last recommendation here, in relation to the admission to a psychiatric facility of persons 12 to 16 years of age, I would read out here recommendation 11: OASW recommends that subsection 32(2) of the HCCA be reviewed and further clarified to ensure that persons over the age of 12 and less than 16 are not denied the protection of an application to a review board concerning their involuntary admission to a psychiatric facility.
Those are our 11 recommendations. They're summarized in the document we gave you, at the back. So now, in the time remaining, we are open to questions here. I have two experts who can answer most of them.
The Chair: We have one minute each.
Mrs Johns: I just wanted to talk about your recommendation 11. I wanted to suggest that people between the ages of 12 and 16 would still be able to get review under the Mental Health Act, that their right of review for involuntary admission to a hospital is still prominent under the Mental Health Act. Really, what we're saying here is that there don't need to be two processes, that the Mental Health Act will allow us to get that review if they need that.
You suggested that professionals needed to be kind about telling people that they were incapable, and so we were really wanting to ask you, did you feel that guidelines from colleges were the best approach to talking to individuals about incapacity or did you feel it needed to be legislated? How did you feel that should be approached?
Ms Guyatt: I think it would be great to have some guidelines from the colleges, but I also think there needs to be something in the regulation. Certainly in the current act there is a good deal in the regulation that helps people to decide about incapacity and so on. So I think there should be something there that requires them to actually inform the patient and to give at least some indication of the fact that it's open to review, because how are they going to know about the Consent and Capacity Review Board if somebody doesn't tell them?
Mrs Caplan: First of all, I'm very pleased to hear that there is going to be legislation that will regulate the profession of social work. I think that if that happens quickly it will solve the problem, because hopefully then you'll be under the health professions legislation or your own separate legislation which could be referenced in this act as an amendment.
I'm not sure if it could be done by regulation. Could the ministry answer that? For the purpose of evaluation or assessment, they've named very specifically individuals who qualify to do those assessments. Do social workers qualify under the act now or would they require regulatory status in order to do that? We'd appreciate that answer on the record.
The question that I have really relates to recommendation 9. I agree with this and I've been suggesting that we have an amendment to this legislation, and possibly as well in the regulated health professions legislation, that would just clearly state out that there is an obligation for the self-regulatory colleges to develop appropriate guidelines to ensure that patients are told when they are incapable and are given information of their rights. You have no problems with that, believe it's an important amendment to the acts?
Mr Andreae: I would say so, yes, definitely.
Ms Guyatt: Yes.
Mrs Caplan: There should be consistency?
Mr Andreae: Yes, definitely so.
Mr Marchese: There are a number of questions I would have liked to have touched on, but one of the points that interests me is the Advocacy Act and the Advocacy Commission in particular. The repeal of that has many very concerned. You began by talking about how in your association your concern is advocacy for vulnerable adults. So it's quite in keeping with what the commission would have done. You also raised concern about volunteer programs for rights advisers, and if they should institute such a program, you said they should have appropriate training, adequate supervision, paid coordinators, all the things that the Advocacy Act and the commission obviously were doing and would have been doing. Do you have a comment on the repeal of the Advocacy Act?
Ms Guyatt: Yes, I do have some concern about the loss of protection for vulnerable people. I particularly regret the loss of systemic advocacy because there isn't any suggestion to replace that in any way. I think that anyone who has worked in a big system, whether it's government or an institution, hospital, whatever, knows how necessary it is for there to be some outside way of reviewing problems that are brought to the attention of an objective person who has the right to delve into it. I can give you examples of that if there is time.
Last year when I was going around helping to inform people about this legislation, I frequently heard from people in the institutions, in the settings for the developmentally handicapped, for example, where there had been abuses and where the system did not work for the victim and where the administrators' attempts to remedy this were thwarted by the system.
A good example is where cases were identified of employees who had actually abused patients, where they were dismissed and they grieved and the administrators were forced to take them back into the same positions that they had, where they were in contact with the patients whom they had actually physically or sexually abused. This is not uncommon, and I understand it goes on as well in institutions for the mentally ill.
So the current system does not always work in favour of the victim or the vulnerable person. You saw yesterday with a young man who was here how he had been raped and had no recourse to help. So I think that the systemic advocacy needs to be addressed somewhere, if not in an Advocacy Act.
The Chair: Time is up. I thank you very much for your presentation today.
ADVOCACY CENTRE FOR THE ELDERLY
The Chair: Judith Wahl, representing the Advocacy Centre for the Elderly.
Ms Judith Wahl: Actually, I'm going to be joined by my colleague George Monticone, who's also from the advocacy centre.
The Chair: You can proceed. You have one half-hour, including all questions.
Ms Wahl: My name is Judith Wahl. I'm a lawyer and I'm the executive director of the Advocacy Centre for the Elderly. This is my colleague George Monticone, who's also one of the staff lawyers at the Advocacy Centre for the Elderly.
Now, for those of you who are not familiar with our service, we're a community legal clinic that provides legal services to low-income seniors in the greater Metropolitan Toronto area. We also engage in public legal education programs and law reform activities across the province on behalf of low-income seniors. We're a unique service. In fact, we're the only kind of service of its kind in all of Canada. I think it's a credit to Ontario that we have such a service. With the aging population, elder law is a growing field of legal practice. We've been in operation since 1984.
Our practice is limited to seniors 60 and over. Actually, probably the average age of our clients is the mid-70s. A third of our practice focuses on client problems related to powers of attorney, elder abuse and competency issues. Based on this experience, from the high volume of cases that we do in this area, the large number of people whom we assist in this area of law, we've developed our response to Bill 19.
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We see at first hand what happens if the needed protections are not in place to support capable seniors in exercising their own decision-making authority. Unfortunately, whether we like it or not, we still live in a very agist society that often assumes people are not as capable as they are, particularly as they age, and I'm going to give you some examples as I'm talking through this presentation.
We also see first hand what happens if people are not informed as to the decisions others are making for them and what happens if they're not aware of their rights when decision-making authority is inappropriately taken away from them. The result is very distressful to the individual senior and it causes a lot of problems, not only for that person but also for systems. People become very distrustful. In fact, when I read Bill 19, some of the provisions, if some provisions go through on the Health Care Consent Act, I intend to sit down with my doctor and contract with her that she will guarantee that she will tell me if she thinks I'm incapable before she turns to my substitute, because I want to know. I want to have that opportunity. We see this from the seniors. They are very distressed if they're not told in that process.
This also ends up being very costly to services. People end up not cooperating because the distrust occurs. The communication diminishes, not increases, and overall it becomes more difficult for everyone concerned -- the seniors, the service providers and the families.
We have a keen interest in the development of this law because of our practice. In the past, historically, we've been participating in all the consultations over the years, with consumers, seniors, other advocates, as well as health care providers, social service workers and the government. You might be aware that I am the chair of the interim advisory committee to the office of the public guardian and trustee on the implementation of the Substitute Decisions Act.
That does not mean that I don't welcome some of the changes in this bill. I think this is all part of a process. Certainly there are things in the existing legislation that warrant changes. However, I'm going to highlight some of the things that we are concerned about that we don't think will be beneficial in this process.
Before I begin with that, I want to give you one example of one of my clients who was caught in a web of not being informed. This woman was in her 90s. She was deaf. She lived in a chronic care hospital. She was very capable. What happened was that she was the subject of a guardianship application. Although the legislation provided -- this is prior to this legislation -- that she was to be served with notice of the guardianship application, she was not; it was served on the hospital administrator. No one told her that the guardianship application was pending.
The assessment that had been done on her had been done in a very cursory manner by someone who didn't know that she was deaf. She was very social, so she, during the assessment, sort of nodded yes and no, and of course she failed the assessment, because she didn't hear the questions being asked of her.
She actually found out about the guardianship application from a distant relative. She was very upset at not being informed. She was not incapable.
When we got involved, we assisted her in unravelling this process, but that took a lot of time and money. In the end, a very good result occurred. After she got involved in the process, she willingly did a power of attorney for property to another relative to assist her with her finances. She was greatly offended that somebody had thought she was incapable -- in fact, she was quite competent -- but there had been an assumption that, because she was old and frail, she was no longer capable. The story ended up with a positive note, but you can see what happens when people are not informed.
We have copies of two bills to make it easier to go through. I'm going to direct you first to the Health Care Consent Act submission.
At the beginning of the Health Care Consent Act, it sets out its stated purposes in section 1. I was quite intrigued by this, because certainly we would support these principles and would hope the legislation reflects these principles. However, in particular, we don't think the legislation that was drafted actually fulfils these principles, particularly the principles in relation to autonomy and communication. If anything, I think the Health Care Consent Act will destroy the communication between people and their health providers.
I guess our major concern with this is the issue of no need to communicate the finding of incapacity and also the loss of the rights advice.
Under the Health Care Consent Act, a health practitioner may find someone incapable of making treatment decisions, and evaluators may find someone incapable of making admission or personal assistance plan decisions, and they're not required to convey that finding to the incapable person. Once the person is found incapable, the substitute decision-maker can be approached for a consent and the treatment can go on. As we've written into the paper, what we have here, I think, is a total failure to communicate.
The fact that there are all kinds of appeal procedures in the act, well, that's real nice, but it's window dressing. If you don't know about your rights of appeal, they aren't going to be acted on. In fact, I would predict that you might as well close down the Consent and Capacity Review Board after Bill 19 is passed because nobody's going to be there because nobody's going to know that it exists.
We think there are two remedies to this. The first is changing the legislation, changing it to require that the health practitioner or the evaluator, where appropriate, must tell the person when a finding of incapacity is made. There were a lot of criticisms about the Consent to Treatment Act. People felt that they had to sort of do a standard kind of format and that was not sensitive. You can work into the legislation a more flexible method of informing the person but the fact of not communicating, not informing, would be not acceptable. But there are ways of talking to a person. Certainly I've had to face that in my own legal practice with some clients, where I've had to tell them that I can't act for them because they're not capable. I know it's really tough. It's probably one of the toughest things you have to do, but if you can't act, you can't act. If the physician doesn't believe the person's capable in respect to treatment, then they can't take that instruction, but surely part of the professional mandate is to figure out how to tell that person and to retain the trust, to retain the relationship.
Secondly, the requirement for rights advice whenever a person is found incapable in respect to treatment must be restored. If you don't have the rights advice, if you're not telling people about their rights of appeal, as I said, the appeal rights are moot. How do we get the rights advice in if there's no Advocacy Commission to provide the rights advisers? There are alternative means. I think we can be quite creative.
Community legal clinics may be provided with staff to fulfil this function in the jurisdiction in which they operate. You have a system of 72 legal clinics around the province. We are what sometimes is called the cheap and cheerful side of legal aid, because we're a capped budget. Certainly, this is the kind of service that can be incorporated into the services that we provide. Other existing services independent of the health system could also provide this rights advice service. We have duty counsel programs now -- I'm not suggesting the duty counsel program be used for this purpose but similar programs could be developed as that type. Also, 1-800 numbers could be used in some areas that are more remote. Where you can't get the body to the person, you can get the phone to the person.
The second way of correcting this problem in the legislation is to wait for a charter challenge. Do you really want to pass legislation that is not charter-proof? In our opinion, this legislation would fail under the charter. It would breach the security of the person. You're going to end up in litigation that is costly, is going to take time. What will be accomplished by that? I think it's a lot easier to change the legislation up front.
Other key issues under the Health Care Consent Act: One of our other concerns is the statement regarding the relationship of the substitute decision-maker to the person, which is no longer required. The Consent to Treatment Act requires that a family member who comes forward as a substitute decision-maker has to make a written statement as to who they are, why they have the authority to make a decision on a person's behalf and the fact that the person would not object to them making the decision. Basically, that statement is a jogging-of-the-memory type of thing. It's to remind people that there might be people in priority to them that should be the substitute decision-maker for treatment for this person. I've had many clients, many calls to our office, where people will phone up, the families will call, they'll start discussing an issue with us and I'll say, "What's your authority to act?" They say, "We have a power of attorney." If you probe further, you find out it's a power of attorney for property, not for personal care, so they don't have the authority that they think they have.
Having people sign this kind of statement is just a jog to them that there might be somebody in priority to them. It's not taking any power away from the family members. In fact, it's honouring the fact that a person may have done a power of attorney, has chosen somebody other than the person who's sitting in front of the health practitioner. This way, the family member can be respectful of all the players and get the right decision-maker there.
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Another concern we have is the failure to define "crisis" in admission situations. In the emergency provisions under this act, there's a provision where a person may be authorized for placement in a long-term care facility without consent, and it's on the basis of a crisis. I think this is a good provision to include in the legislation. However, when I first read it, I kept on going: "Which crisis are we talking about? Are we talking about crisis related to the individual?" And then that makes sense. But we've had three cases in our office where hospitals have claimed that they are in crisis and for that reason they're forcing the transfer of a senior citizen out of their facility into another facility that's not of their choice. With the long waiting lists, once you get into a long-term-care facility, it's extremely difficult to transfer out into another facility. So once you're in, that's it. So I think it's inappropriate to put on the backs of senior citizens the problems in the health care system.
I'm not saying the hospitals don't have problems with backlogs and people who should be placed in the appropriate level of care. What we're saying is that we have to appreciate that the crisis has to relate to the individual's care and needs and not to an economic problem that's occurring within a facility. Because once the person's moved, they're not going to be able to move to a facility of their own choice, or it's very unlikely they'll be able to move. I think this is very disrespectful to the senior population.
One other comment about the Health Care Consent Act: Health practitioners, evaluators and capacity assessment. This is what appears on page 11 of our brief. The Health Care Consent Act assumes that all health practitioners are able to assess whether a person is capable with respect to treatment decisions within their particular field of expertise. It also assumes that certain persons known as evaluators can assess in respect to admission to long-term care. Our experience with the Consent to Treatment Act and Substitute Decisions Act is in fact it flushed out the fact a lot of health practitioners don't understand their role in assessing capacity. There has been a lot of confusion over capacity assessment, and part of it is the confusion over the law, but they don't understand what they're supposed to do. They haven't received the training. So I think it's fair to have some confusion about this.
We've had questions put to us. We've been told that, "Well, I can't provide treatment to somebody because the person's objecting to treatment." When I would ask the health practitioner, "Well, is the person capable or not?" they go: "Oh, no. All that's important is that they're objecting." Well, that's not what the Consent to Treatment Act says. It says that you have to determine if the person's capable or not. If they're not capable, then there's a certain process. But then you can turn to the substitute decision-maker. You don't have to put that person in jeopardy because you're having a problem in making a decision. What we often saw is that some health practitioners were very reluctant to make decisions because they didn't understand how to do the capacity assessments.
I've spoken all over the province teaching these acts. Many of the sessions we do are to health providers. It's very interesting to see that, once we had some education within the area, people said: "I understand it. I can work with it. I know what I'm doing. I've got a lot of confidence in this." We had a one-day-long session up in Fort Frances that I particularly remember, because one of the surgeons turned to me and he said: "This is nothing. I can work under the CTA because now I understand it." But you have to have that understanding. So we're recommending that there be training for health practitioners, for evaluators, to be able to do their job, particularly for the evaluators. They're not working in assessing capacity in their field of expertise. You're asking audiologists to assess capacity in respect to admission? That's a different kind of capacity.
Just a few comments on the Substitute Decisions Act. We have the same concerns about the lack of rights advice under the Substitute Decisions Act, but something that's of particular concern to the senior population is the witnessing of powers of attorney for property and personal care. This is on page 3 of our SDA brief. The amendment act would permit children to be witnesses to powers of attorney. Now, I'm saying this without any disrespect for families: Unfortunately, there are some people who are going to take advantage of that situation. I think you're opening the door to unnecessary abuse if you're saying a child is going to be a witness. A child is somebody who can profit from the estate of a senior, so why have them as witnesses? You might as well take out all the prohibitions against witnessing for anybody if you're going to go that far, and I don't think that would be reasonable. Just remove the conflict; you avoid the real potential for problems. Again, I don't think there's difficulty in getting witnesses other than the children in those circumstances.
Again, I'm saying this also from our experience of many times. Particularly when people are having hard economic times, they might try to take advantage of the situation to get mom's money. And we don't want that situation to be exacerbated.
Another point is service providers as guardians of property of the person. This is one we have deep concern about, again, based on some of the cases that we've done.
The Substitute Decisions Act would prohibit a person who provides certain services for compensation from acting as guardians of property or of the person. However, the amended act would not only let these people act in that capacity but would also put them in priority to the public guardian and trustee. With all due respect, this doesn't make sense. The public guardian and trustee is a decision-maker; a service provider is a service provider.
Let me give you an example of what you could be opening the door to, and this is a case that we have worked on. It's in the recent past. We dealt with a care home, so it's a type of boarding home situation in which services are provided for seniors, which was in financial straits. One night they disappeared, in effect, and moved all the people who were in that facility to another facility in which the operator had a monetary interest. Even the personal goods of the people were left behind in their rooms. These were capable people who were moved, without their authority, without their consent, without their permission, but because they were dependent upon the service provider for assistance, that's how much authority the service provider had.
Now that matter is unravelling. What would have happened if a service provider had full authority as guardians of property and the person? Remember that in guardianship applications family members do not need to be served. A guardianship application could go through without people knowing.
The last point I just want to make through the questions is our concern about the activation of the power of attorney for personal care. The way Bill 19 has set it up is that the power of attorney for personal care would be activated in the same way as the financial power of attorney, which is, if I give George my power of attorney for personal care, he thinks I'm incapable, he just can start using it. He doesn't have to tell me that he's using it. Again, we think that this could lead into a lot of problems. What if I'm not incapable? What if he's jumping the gun? It could cause a tremendous amount of distrust between us.
I think it is appropriate that the attorney must inform the person that they're going to use the power of attorney for personal care, and that they believe the person's not capable of making the decisions, and that should be placed within the legislation.
Likewise, we think it should be clear in the legislation that the attorney for personal care should stop acting for the person if they become capable again. So say that I was incapable for a period of time. George started using my power of attorney. I again become capable. He should stop acting, and that should be clear in the legislation. I don't think it's clear now. You're going to cause a lot of confusion if you don't clarify that.
You see our briefs we've given you. The other points we haven't had the time to mention all of them. I'll leave those to you for your reading, and we're open to questions.
Mrs Caplan: How much time is there, Mr Chairman?
The Chair: Twelve minutes. So that gives us four minutes each.
Mrs Caplan: Right. Excellent brief. Thank you very much. Actually, you made a couple of points that haven't been dealt with before. The first one that I think is an interesting one is the one relating to the power of attorney. It was always my assumption that you couldn't use a power of attorney unless you had been declared incompetent for health -- personal care reasons, and secondly, that it would cease if your competency was restored. I think that should be clarified if in fact you're right, and I'd ask the ministry to let us know how that works and whether it needs clarification. That's a good point.
You also raised something that has only been touched on by others that we think is extremely important. That's the issue of training and quality assurance for evaluators and assessors and rights advisers and so on. It's been my view that the Psychiatric Patient Advocate Office, who will be the only ones left with any experience in this field, would be the appropriate ones to undertake and perhaps certify those who could do training. They could do the training and do the certification for anyone that has taken their course that they believe would be a good rights adviser.
Do you think that's a good solution to that?
Ms Wahl: Are you talking for rights advice or for capacity assessment?
Mrs Caplan: I think rights advice, because that's what they do. As far as capacity assessment, I don't know that there is anything which is consistent across the province. Each of the colleges would have responsibility for ensuring that their members were up to standards, but for rights advice, to have some consistent approach, I thought the PPAO may be the appropriate body to do that.
Ms Wahl: Certainly that's one of the avenues. There's no question, because they've had the experience. I think there are other players that also have experience, but I think that's a very good suggestion.
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For capacity assessment, I would also bring attention to the capacity assessment office. The whole concept behind that office and why it was developed was to try to develop a common standard. I can remember sitting on the Fram committee years ago, and the original intent was to try to get all the different players who do capacity assessment a better understanding of capacity. The one thing I've learned in the last 12 years working in this area, is that people don't understand capacity assessment and we're in our infancy of understanding it.
Mrs Caplan: It will evolve.
Ms Wahl: This is part of the evolution. We can learn from that. There is a massive training manual from that office that could be used in training people and to have better understanding.
Mrs Caplan: The other concern is that there is no mandate in this legislation for anyone to educate, whether it's the public providers or families. I've always thought that could be a role for the Consent and Capacity Board who are the one independent source, and they give judgements from their experience. I know that they've been doing some education, particularly of providers, and they answer questions, but it seemed to me they could be given a mandate here --
Ms Wahl: I think that's one avenue, but they are a tribunal and there are other options. I'll tell you, I can speak for ourselves --
The Chair: Excuse me, Ms Wahl, we have to move to the next presenter.
Mrs Boyd: You've given us a great deal of material, and I know you've only been able to touch on some of it.
Ms Wahl: Our original analysis was 200 pages.
Mrs Boyd: I can assure you that we will be very careful about looking at the full analysis.
I must say that in what you said you very succinctly summarized a lot of the concerns we've already heard around the rights advice issue, and particularly the necessity for someone to understand that they have been deemed to be incapable because that, it seems to me, is the crux of the matter here in terms of getting the whole process started.
There have been some questions raised about the Ulysses contract and the waiver there. We had one delegation yesterday; I expect we will hear more about that. I note that you've got a bit of a critique around how those waivers actually work and whether in fact it does what it's supposed to do. Would you comment on that for us?
Ms Wahl: Under the amending act it's a standardized form, and what we're proposed is that people be given the right of choice to choose how much authority they want to give that person. If the whole idea behind powers of attorney for personal care is they are to be personalized, then that option to personalize should be retained; as well, all those persons who already had registered Ulysses agreements be informed of the changes, because with all due respect the transition section changes those documents dramatically. So they need to be informed.
Mrs Boyd: To protect them.
Ms Wahl: Yes.
Mr Marchese: We appreciate your brief very much. I think you have a wealth of experience in working with vulnerable citizens and I hope the members get an opportunity to read the entire submission you made, not just the ones we've heard.
My comment, briefly because we haven't got much time left, is on the Advocacy Act. You talked about rights advisers and said that if they are to be eliminated, hopefully they would do a number of things, 1-800 numbers which they like to do, but legal clinics perhaps is another alternative. As much as some of these alternatives need to be in place in the event they abolish it, as I think they will, I don't think they will be adequate. Part of what the Advocacy Act does through the commission is to provide a mechanism to coordinate all the services, which no one has done or can do, so that if you give some money -- which they won't -- to some organization to do a little extra, it won't suffice to get to the systemic problems the Advocacy Commission was, in part, also wanting to do.
Do you have a comment on what it means to lose the Advocacy Act and the commission?
Ms Wahl: We were very strong supporters of the Advocacy Act on the basis that, from our experience in our work, we saw the need for additional advocacy services, we saw the need for the social advocacy services. I participated in the O'Sullivan inquiry commission. We see it first hand. I agree with you that the other replacement models are only pieces. Having a comprehensive system would go a great deal of the way to assist vulnerable people.
Mr Tilson: Brief question, depending: Most lawyers will tell us, of course, that the law requires that notice be given to people if an application is being made or consideration is being made to review their competency. Some doctors, some medical health care providers, will come and say that in some situations that may cause a deterrent and, furthermore, that they have a professional obligation to provide such notice. This issue is giving some members of the committee some concern and obviously you as well, and that's assuming we have defined who assessors are, their qualifications etc.
If notice is to be given, how should that notice be given so that it won't be hampering the doctors or the medical health care providers so that their concerns won't be alleviated. In other words, do you get a formal notice, a complicated piece of paper? One of the previous people who was speaking just prior to you talked about providing notice in a kindly way. I think it was a social worker group. There are all kinds of ways in which that could be done. Have you philosophized on that?
Ms Wahl: I think you start out by talking to the person, quite bluntly, you should tell the person, you talk with them --
Mr Tilson: I appreciate that but --
Ms Wahl: -- and you use your professional judgement in doing that.
Mr Tilson: If I could just throw out to you, though, you were suggesting a form of amendment to the legislation.
Ms Wahl: Yes.
Mr Tilson: You can't say it just like that. What sort of notice --
Ms Wahl: I think you can say in the legislation that the health practitioner must inform the person. I think there can be some degree of flexibility on how you do it. I like the piece of paper. I sat through all those debates for years, and believe me, this was an issue that was tossed around and tossed around, "How do you do this effectively?" Pieces of paper are easy and they also perform for everybody; it's something of a comfort. But that doesn't replace talking to people, so it's literally addressing the person, talking with them.
I don't think you have to have a standard script, but I think you have to have the person advising them that they have found them incapable of turning to a substitute. The language they use can be up to them and they can give it on a piece of paper so that it's covered in both directions if people misunderstand. It's basically what's in the Consent to Treatment Act now.
Mr Parker: Thank you very much for a very well delivered presentation. I find much to recommend it and much I'd like to talk about. There is one question in particular I'd like to address and that relates to recommendation 9 that I see on page 9 concerning the Substitute Decisions Act.
That is your concern that, as drafted, this bill would not allow the public guardian and trustee to look behind a power of attorney that's presented. He has to take it as given and defer to it and you would rather have the public guardian and trustee have the power to sniff around a little bit if they think something fishy's going on.
I want to make a point and then ask a question. What we have heard loud and clear as a concern about the present legislation is exactly the opposite, that people don't want public bodies to have the power to go rooting around in their personal lives, that they want to have the discretion to put their wishes in a power of attorney and say: "This is what I want. Go away, leave me alone."
To address your concern, wouldn't it be possible for a person who sees that problem coming down the road to put a provision right in their power of attorney to say, "If it turns out that the public guardian and trustee is concerned about the bona fides of the situation when this document is presented, then they have the authority to go ahead and make inquiries"? In the alternative, doesn't the public guardian and trustee have the authority to apply to a court to object to the application of a power of attorney if they think the circumstances around its exercise are fishy?
Ms Wahl: Under the way the legislation is drafted they can't. I'm not saying they go fishing. What I'm saying is, the way I read the legislation, it just says, "If I have a power of attorney and if George is the public guardian and trustee, I give it to him and he has to step out." Can they question the validity of it at all? Is it in proper form? If they have information from a third party, if they've been advised that this was obtained under duress -- I can tell you, a high proportion of our practice is dealing with powers of attorney gone wrong, and so that's what we're basing this on. If they have information that would lead them to believe there was something wrong, let them look into it. We're not saying, "Look around." They don't have the time, they're not going to do that.
Mr Parker: I'm not suggesting that's what you're suggesting. What I'm suggesting to you is that they still have the power under the proposed bill --
Ms Wahl: I don't see where it is.
Mr Parker: -- to apply to a court if they think the circumstances are inappropriate.
The Chair: I'm sorry, Mr Parker, the time is up. I'd like to congratulate you on your report. I wish this committee had an hour to spend at least on it with you, Ms Wahl. It was an excellent analysis of both acts and thank you very much for your presentation.
Ms Wahl: Thank you for the opportunity.
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ONTARIO HOSPITAL ASSOCIATION
The Chair: The next presenter will be the Ontario Hospital Association.
Mrs Caplan: While they're coming forward, Mr Chairman, and settling in, Mrs Etta Ginsberg-McEwan, who was here this morning, left a note. Perhaps I could just read it, it'll take a minute, and put it on the record. What she says is, "I didn't have time to make two important points." Could I make those?
Mr Tilson: Why don't you copy the note and give it to us?
Mrs Caplan: I told her I'd read it in the record if we had two minutes.
Mr Tilson: We've got delegations sitting here and we're already over time.
Mrs Caplan: All right. I'll wait until there's time. It could have been done if you'd just let me do it.
The Chair: We can deal with it at the end of the day, if that's okay.
Mrs Caplan: That's fine. We'll do it at the end of the day.
The Chair: Welcome this afternoon. I would ask that you identify yourself for the purpose of Hansard.
Ms Marion Leslie: My name is Marion Leslie.
Ms Carolyn Shushelski: I'm Carolyn Shushelski from the Ontario Hospital Association.
The Chair: We have one half-hour set aside for you. That includes questions and the floor is yours.
Ms Leslie: Thank you for the opportunity to appear today before the committee as it considers Bill 19, the Health Care Consent Act. My name is Marion Leslie. I'm the president and chief executive officer of Providence Centre, a chronic hospital and rehabilitation hospital in Scarborough, and I'm also chair of the Ontario Hospital Association task force on consent, substitute decisions and advocacy. I'm joined by Carolyn Shushelski, legal counsel to the OHA.
This is actually the third time over the last four years that the OHA has appeared before this committee to present its views on legislation introduced for the purpose of protecting the rights of vulnerable people in health care facilities.
The legislative package on advocacy and consent, originally introduced in 1992, was an extremely complex one with four bills sponsored by three different ministries. Although supportive of its underlying principles, in our view, it introduced many procedures which ultimately are unworkable and established unnecessarily complex and adversarial procedures involving patients and their families, providers, the government and other parties.
In April 1995, the legislation was proclaimed. Seven months later, Bill 19 was introduced. If passed, it will repeal the Advocacy Act, replace the Consent to Treatment Act with the Health Care Consent Act and amend the Substitute Decisions Act and other related statutes.
In anticipation of the challenges of applying the new legislation in a health care setting, the OHA established a task force to develop guidelines to assist hospitals and health practitioners in the development and implementation of policies and procedures for their institutions in order to meet the requirements of the legislation. As I indicated in my introduction, I am the chair of this task force. The membership of the task force includes representatives of our member hospitals, and that includes trustees, administrators, physicians, nurses and staff of health records departments. It also includes membership from the Ad Hoc Coalition on Consent to Treatment, Substitute Decisions and Advocacy, and the Ministry of Health.
We have included a detailed list of our membership in our document. After almost a year and a half of work, the task force completed a reference manual on the legislation for hospitals which was distributed to our members in March 1995. I have a copy of the manual here to give you some idea of the extent of the complexity that was required in interpreting and helping our member institutions develop their own policies and procedures.
We also organized a number of educational sessions for our member hospitals. In addition, individual hospitals established their own committees to study the legislation and to develop policies and procedures to respond to the legislative requirements. Hospitals also had their educational sessions. Due to the complexity of the legislation, it was an enormously time-consuming exercise. The costs incurred by the OHA and the hospitals to develop the manual and the policies and procedures and to organize the sessions was indeed significant.
It was during the process of attempting to translate the legislation -- even after it had undergone extensive amendment in the legislative process -- into practical administrative and clinical guidelines and procedures that our original concerns about the legislation were heightened and we became convinced that certain aspects of the legislation simply would not work in practice and that there were components of the legislation which needed to be seriously reconsidered.
Given the somewhat tortuous history of patient rights legislation in this province, I am sure that you can appreciate we are approaching this new bill with some caution and concern. However, having now conducted an examination of the legislation, we are here today to advise the committee that we believe that Bill 19 does appear to address many of the concerns which we had identified in the previous legislative package.
We would now like to offer for your consideration our commentary on what we believe to be key sections of Bill 19.
OHA supports the new definition of "treatment" and the exclusions to that definition. The addition of clause (g) that deals with non-harmful treatments is particularly helpful.
Bill 19 provides definitions for "course of treatment" and "plan of treatment." The members of our task force spent a great deal of time researching and developing definitions for a plan of treatment and a course of treatment and we are pleased to see that the definitions in the new act reflect the definitions which were developed by the Ontario Hospital Association task force.
Bill 19 removes requirements that rights advice or notice respecting rights advice be provided to a person who is found incapable by a health practitioner with respect to a treatment. This removes one barrier to timely care, though it raises other concerns.
OHA believes that the appropriate role of the health practitioner is to provide care and treatment to the patient, which includes obtaining the appropriate informed consent.
Under Bill 19, a health practitioner is not prohibited from administering treatment after confirmation of a finding of incapacity by the Consent and Capacity Review Board, and the seven-day period during which the board's decision can be appealed, unless one of the parties indicates to the health practitioner that he or she intends to appeal.
OHA supports this change as it will enable, in most circumstances, the required care to be delivered without delay. However, where an application is made to the board, treatment delays can still occur between the time a patient is found incapable and the time of that hearing.
This bill clarifies the test for informed consent, and we support that change. We believe that the legislation sets out the test for informed consent in a manner which reflects that which is outlined in our reference manual, and clarifies those aspects of the test that were somewhat cumbersome respecting what the health care practitioner must disclose to the patient about the material risks and effects involving alternative courses of action.
Under Bill 19, a health practitioner is entitled to presume that consent to a treatment includes consent to a variation or adjustment in the treatment or to a continuation of the treatment in a different setting if the risks and benefits are not significantly different as a result of the variation, adjustment or change in setting.
This change addresses two practical problems that we identified in the course of our review with respect to the existing act and the preparation of guidelines. In the first instance a physician, for example, may obtain consent for a particular medication and writes an order for the administration of the medication. It may be necessary to make minor adjustments to the dosage or frequency in the administration of the medication. The amendment will permit the required medication changes to be made in a timely manner. In the second instance, where a patient is transferred from one facility to another, a treatment started in one facility can be continued without interruption upon the patient's transfer to the other facility.
We support this change because it allows for these minor variations in treatment. We believe it is a more reasonable and practical approach to the delivery and management of the care of a patient.
The act stipulates that if a plan of treatment is developed for one person, one health practitioner may, on behalf of all the health practitioners involved in the plan, propose the plan to the person, determine the person's capacity with respect to the plan and ensure that consent is obtained.
We believe that it is reasonable and practical for the overall management of a patient's care that one health practitioner obtain consent to the whole plan. We also believe that for a particular treatment, only a health practitioner who has the knowledge to impart the appropriate information about the treatment and to answer the patient's questions about the treatment should be the person who obtains the informed consent for a particular treatment.
We would also expect that individual practitioners will continue, as part of their own standards of practice, to obtain consent for a particular treatment if they believe they should do so.
The new act will continue to provide a list of possible substitute decision-makers and will rank the persons on the list. OHA supports this, as access to a list of substitute decision-makers is necessary when a person who requires care is incapable and consent must be obtained prior to treatment being administered. We also support the public guardian and trustee continuing to be the decision-maker of last resort if there is no one else on the list to make the decision or if two or more persons of equal rank disagree.
In the preparation of the OHA reference manual, task force members discussed the need to provide caregivers with some assistance as to who is to be considered a relative. Therefore we are pleased that the new act clarifies that relatives are persons related by blood, marriage or adoption.
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While supportive of all the other changes to this section of the act, we would like to point out the potential for conflict which may arise, given the change which now ranks parents and children equally as substitute deciders.
Under Bill 19, formal family member statements will no longer be required. As well, health care practitioners will be able to rely on assertions made voluntarily by anyone who gives or refuses consent to a treatment on an incapable person's behalf. We are supportive of both these items.
Bill 19 permits emergency treatment without the consent of an incapable person if the communication required in order for that person to give or refuse consent cannot take place because of a language barrier or because the person has a disability that prevents communication from taking place. We support this because of the inherent difficulties hospitals face in obtaining comprehensive and timely interpreter service in all instances. However, we want to emphasize that we support this provision being a limited authority only to act in an emergency.
Under Bill 19 the health practitioner may treat in an emergency despite the refusal of a substitute decision-maker to consent, even if the substitute decision-maker is a guardian of the person, an attorney for personal care or a board-appointed representative, where that person is not acting in accordance with the principles of the act. OHA strongly supports this change because we believe a patient is entitled to receive appropriate and timely treatment and that a substitute decision-maker, regardless of the category, should act in accordance with the principles of the act. If they do not, then the health practitioner should be able to administer the treatment.
Given our strong belief that a patient is entitled to receive treatment in an appropriate and timely manner, we support the provision in the bill which permits the health practitioner to apply to the board if he or she is of the opinion that a substitute decider who gave or refused consent to a treatment on an incapable person's behalf did not comply with the decision-making principles set out in the act.
Bill 19 provides a model for obtaining consent on behalf of incapable persons for admission to health care facilities. Under the existing act, admission is tied to treatment, and this has posed problems when individuals do not require specific treatment as defined by the Consent to Treatment Act, but do require admission to a long-term-care facility. The ability to access the hierarchy of substitute deciders is useful for purposes of admission, and we support the proposed model in this bill.
Some patients who are incapable may require assistance with certain activities of daily living. These activities may include hygiene, dressing, ambulation, washing, grooming, elimination, positioning and other routine activities of daily living.
Under part IV of Bill 19, a framework is introduced for personal service assistance plans. We believe that the intent of part IV is that where a person who is incapable requires assistance, or the provision of assistance with these activities, the hierarchy of substitute deciders may be accessed for consent.
If this is the intent, then we support part IV, but we would recommend that the term "activities of daily living" be substituted for the term "personal assistance services"; "activities of daily living" is the term commonly used in practice. In this regard, we understand that the ad hoc coalition will be making a submission that will suggest a definition for "activities of daily living" as follows: "an activity that the person performs routinely and may include activities such as hygiene, dressing, ambulation, washing, grooming, elimination and positioning or other routine activities of daily living." We would support this definition.
Part IV of the bill as presently drafted applies only to certain care facilities. We would suggest that it should apply to hospitals and other health care facilities as well. This is consistent with our previous position that the approach to care and treatment of a patient should not be dependent upon a location but should be related to the treatment that is being proposed.
In conclusion, it is our view that Bill 19 represents a package of reforms, refinements and adjustments to consent to treatment and substitute decision-making that is fair and balanced. Bill 19 is a workable resolution to the practical difficulties that currently exist in the legislation. It requires the health practitioner to obtain, from a patient or a substitute decision-maker on behalf of an incapable patient, an informed consent to treatment prior to the treatment being administered while ensuring that timely and appropriate treatment can be administered in emergency situations.
We also believe that the government needs to give consideration to ensuring that information is made available to the public about the new legislation upon its proclamation.
Mrs Boyd: Thank you very much for a very thorough job in terms of dealing with concerns that I know you had raised before, and that's very helpful.
On the section on page 5 where you're talking about personal assistance plans and wanting that language changed to "activities of daily living," we've had that suggestion from a number of other people and in that regard had expressed to us a very strong concern around the issue of both nutrition and hydration in terms of where they fit in, whether they are a treatment or whether they are part of those activities of daily living. The concern was raised that there is a practice that still exists in many cases where food and water are withheld.
I wanted to find out from you whether you consider nutrition and hydration part of the activities of daily living or whether you consider them as part of treatment, and whether you share the concern which was brought to us by Father Thomas Lynch from the Roman Catholic Archdiocese of Toronto as that being a possible problem, in terms of the explicitness of what can be expected in terms of care, and whether or not it is appropriate for those things to be withheld without express permission.
Ms Leslie: Maybe I could just speak personally about my institution and then I'll ask Carolyn to respond more generally. We have very explicit guidelines as to how we handle those situations. They are discussed with the client or the client's family, as the case may be. That's something we monitor regularly and indeed is endorsed by our board of directors. So they're very explicit guidelines that we have to handle that type of instance.
Ms Shushelski: We often talk about, where does nutrition fall in this scheme? I think that it can get somewhat complex in the acute care facility. It seems to fall under treatment in one respect because in a hospital one even requires an order basically even before you can order the diet, and the physician has to at least assess the patient to determine what the problem is because it would be inappropriate otherwise.
On the one hand in the hospital you end up with a situation where you actually have an order written on the chart as to what the diet of the individual is, even if it's a regular diet. There has to be some kind of indication to the members of the team about what this patient's needs are. So to that extent I guess one could argue that if you are making an order for that, that must then in some way be connected to treatment.
On the other hand, outside of that restriction, if you will, you ask a person what he wishes to eat and you provide it within what's available that you can give him. But certainly no one would suggest that it should be withheld from them.
Mrs Boyd: But we all know that in terminal cases, and certainly where communication has ceased, we have to agree that there has been a practice at some point in each of those cases where food no longer may be offered. What Father Lynch was talking about was if it is not clear whether that's part of treatment and therefore a substitute decision-maker is asked to approve that or not approve that, or whether it's somehow just left out of this picture and the substitute decision-maker never gets a chance to participate.
I know at your facility it's very much part of the plan and I would think it might be at some. But his contention, having worked in many different areas, was that that is not necessarily true and that one of the problems for incapable patients often is that decision-making around nutrition and hydration seems to get lost in the shuffle.
The Chair: Thank you, Mrs Boyd. Your time is up. Mrs Johns.
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Mrs Johns: I just wanted to ask you a question on your section called "Substitute Deciders." When we were doing reading to get ready for this, we read a lot about the previous act and the controversy that surrounded the hierarchy of who could decide and that it was too long and too onerous. So in effect we grouped people together, and being in the middle generation I can understand how my parents could make a decision for me, or my adult child. So parents and children, for a person like me, were put on the same level -- ranking, let's say.
You're suggesting that may not be appropriate. Can you comment on the problems with the old act versus what we've done, how you would change it and what you would like to see?
Ms Shushelski: First of all, just to make it clear, we do like the ranking. If we've given the impression that we don't, then just to make it very clear, we do think it's appropriate to have a ranking. It's very useful. When it comes time to find a substitute decider, it avoids a lot of conflicts.
I think the only part we were trying to say here that we were just a bit taken aback by was the ranking of parents and children on the same line, basically -- not a rank, but they actually are on the same line. In our discussions with our task force we certainly had many discussions about who is a relative, whether that's blood or not blood-related, but I don't remember us ever having a discussion about potential conflicts between parents and children. I think that in the previous ranking, the parent or child was one above the other. I can't remember specifically, but there was a clear line that you went first to either the child or the parent and then you went to whichever was the other person. What's changed here, I think, is that now we've grouped two people together, parents and children, and if there's, let's say, one parent and one child -- and you say you're the middle child.
Mrs Johns: No. I could be the adult and I could have adult children and I could have parents still alive, in the 40-50 age group, let's say. So my parents are still alive. They could choose for me or my adult children could be there. They could be 22 or 23 with my age, and so which one of them should make the choice for me?
Interjection: It is a problem.
Ms Shushelski: It's a problem, but I guess what we're concerned about is that we would hate to see arguments develop between a parent and child over who's going to make a decision for that person, and because of that argument it ends up in the public guardian and trustee's hands and neither relative ends up making the decision for that person. So in fact you've defeated your whole purpose and somebody completely outside the family ends up making that decision. I can see how between a parent and a child who both care very much about that person --
Mrs Johns: That's right.
Ms Shushelski: -- you can certainly get into many arguments. I don't say we've got the answer; it's just something that we've identified.
Mr Ramsay: I want to thank you for your presentation. I wanted to just ask you this. When we talk about the one practitioner to propose the plan, that now the act would allow that if there's a whole plan of treatment, only one practitioner can propose the plan or needs to propose the plan and determine the person's capacity with respect to the plan and ensure that the consent is obtained by the plan, I thought your comment was interesting that you also expect that individual practitioners will continue, as part of their own standards of practice, to obtain consent for a particular treatment if they believe they should do so.
Is that a custom that developed since the last act because people wanted to make sure they were protected, and do you think this custom is going to change now that this act only requires, say, the head of the plan or one representative of the multidisciplinary team to obtain their consent? Do you think that just will go by the wayside or do you think each of the colleges will keep that as a standard and require each practitioner to obtain consent?
Ms Leslie: I think that represents current practice, that there will be a plan agreed to and one person can sign off on the consent, but that each individual practitioner, if he or she feels it appropriate, will indeed get the consent for their particular treatment, and so I think that reflects current practice.
Mr Grandmaître: The group that appeared before us, Judith Wahl of the Advocacy Centre for the Elderly, was very concerned about the communications about this bill once it's in force. I see that the OHA, if I'm not mistaken, established a task force to develop guidelines to assist hospitals and health practitioners in the development of the implementation of policies and procedures of their institutions, and so on and so forth. Did your task force go as far as educating health practitioners how to deal with -- their recommendation reads, "We recommend that all health practitioners should be trained to do capacity assessment in respect to treatment decisions." Did your task force go that far?
Ms Leslie: No. We see it as our responsibility to have our member hospitals, and the member hospitals have a responsibility to be sure their own staff, are aware of the legislation, so understanding the legislation and their responsibilities around it. But not with respect to training assessors.
Mr Grandmaître: Do you think that all practitioners should be trained to do capacity assessment?
Ms Shushelski: Probably not. I think what it really comes down to is for what purposes the practitioner is carrying out the capacity assessment.
Mr Grandmaître: They claim that a lot of practitioners didn't know what it was, the responsibilities or --
Ms Shushelski: I think, in fairness, what's happened over the last several years, and it really does go back certainly into the 1980s as far as I can recall, is there's been a lot of discussion and there's been a process. It's been a development. The whole issue of capacity has been moving along and evolving. When the consent act and the Substitute Decisions Act became law last April, there was a lot of education required and there was suddenly this notion that if you're the person who's actually going to propose the treatment, then you're the person who ought to be doing the capacity assessment, and it sounds logical and reasonable.
Mr Grandmaître: Are they trained for it?
Ms Shushelski: The difficulty is, I'm not so sure that -- well, I think everyone before these acts came into being probably did it on a level where they weren't really saying, "Here are the sections on how to determine capacity, and I have to ensure that each one is followed." It was the first time we ever really saw anything in writing as to how to actually carry out a capacity assessment.
So I think it's very important that you do think about who is the person who's proposing the treatment and is it relevant or appropriate that if that person is proposing the treatment, they should, if they're going to be talking about the risks, benefits and side effects, also be able to ensure that the person they're talking to understands what they're saying? Because if you're not imparting the right information and you yourself ensuring that that information's coming back that the person understands it, then it becomes a bit difficult.
Should everybody be doing capacity assessments? Maybe not. But certainly if they're not, they have to ensure whoever is doing that capacity assessment is going to be able to appreciate and understand the information that has to be passed over.
The Chair: Thank you very much for your presentation.
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ONTARIO PSYCHOLOGICAL ASSOCIATION
The Chair: Our next presenter will be the Ontario Psychological Association, Dr Ruth Berman and Dr Hamovitch.
Dr Gregory Hamovitch: Mr Chairman and members of the committee, I'm Dr Gregory Hamovitch, president of the Ontario Psychological Association, and with me is Dr Ruth Berman, our executive director.
The Ontario Psychological Association is a voluntary organization which since 1947 has represented the profession of psychology in Ontario. Our membership of approximately 1,400 includes clinical and academic psychologists, psychological associates, psychometrists and graduate students in psychology. Psychologists hold doctoral degrees and as service providers have been independently regulated under statute in Ontario for over 35 years. Currently, we are regulated by the College of Psychologists of Ontario under the Regulated Health Professions Act.
We are pleased to be able to be here today to express our support for Bill 19. While our comments today will focus specifically on a specific amendment to the Substitute Decisions Act, we wish to state at the outset that we believe that Bill 19, with its introduction of a new Health Care Consent Act and its amendments to the Substitute Decisions Act, will better achieve the goals of simplifying laws respecting consent and substitute decision-making, reduce delays in treatment and restore the appropriate balance in health care decision-making.
We would now like to direct our comments to the particular issue that has brought us before you today. The Ontario Psychological Association had been particularly concerned and vocal about the last-minute changes introduced to the current Substitute Decisions Act, 1992, and Consent to Treatment Act, 1992, prohibiting parents or guardians from consenting to the use of faradic stimulation on behalf of individuals unable to consent for themselves. This amendment was introduced in the absence of any consultation with the appropriate health care professional associations or their regulatory bodies. Response-contingent shock therapy, including faradic stimulation, is based upon a psychological model rooted in behavioural research and theory. In spite of this, neither the Ontario Psychological Association nor the College of Psychologists of Ontario, our regulatory body, was consulted in any way prior to the changes in this act.
In having been excluded from this process, the very groups with scientific and clinical expertise in the treatment of self-injurious behaviour, and the group with a broad knowledge and research base in the area of aversive conditioning, were unable to provide valuable input that might have prevented that unfortunate decision in the first place. At the same time, the government of the day appeared to have responded solely to pressure from a small number of opponents who, however well-intentioned, seemed to have been misinformed about the use of faradic stimulation.
We are therefore very pleased to note that the present government has recognized the injustice inherent in a prohibition against faradic stimulation based on substitute consent and fully support its decision to reinstate the rights of family members or guardians to consent to its use as a treatment when necessary.
We recognize that the idea of utilizing shock as a form of treatment may raise some emotional reactions and that opponents to the removal of the prohibition to consent to aversive conditioning as treatment will exploit this emotionality. You therefore must remember that this form of treatment is used only in very extreme cases of self-injurious behaviour. One needs only to hear the story of Brian Singer to understand what we are talking about. I understand that some of you will already be familiar with this story and have heard some of these reports, but it none the less bears repeating, because what we are talking about are very, very small numbers of individuals, and Brian's example represents one but is similar to others.
He is a 27-year-old developmentally disabled young man with a 20-year history of self-injurious behaviour. He has been tested and classified as profoundly disabled and functions at the level of a two-year-old with no verbal skills. He also demonstrates autistic behaviours. He was admitted to Southwestern Regional Centre on October 8, 1986. When Brian arrived at Southwestern, he had been wearing a straitjacket, as this was the only means, however inadequate, of keeping him from beating himself. He was wearing a football helmet to prevent him from creating infections in his cauliflower ears by pounding them with his knees. He arrived at Southwestern with a cracked bone in his arm, despite a straitjacket, a helmet and heavy doses of medication. His fingers were also becoming atrophied due to misuse.
With contingent faradic stimulation, he had a dramatic improvement from inflicting several hundred blows to the head per day in 1986 to the point that in 1993 he required only a total of five contingent shocks for the entire year. From 1990 to 1993 there were several months when due to an infection or stress he would require one or two shocks and then they were not required for months at a time.
To give you some insight into the efforts that were made to come up with alternative treatment solutions, I will give you a brief account as follows.
Brian had been on many courses of medication with trials recommended by Dr Hinton, a paediatric neurologist; Dr Goldberg, consultant psychiatrist of University of Western Ontario, and other physicians. He had the benefit of consultations by numerous physicians, including major advocates for other approaches. A full spectrum of new technologies had been tried in addition to new or non-tranquilizing medications. In addition to these, a whole gamut of physical restrain techniques were used such as a four-point bed restraint, manual restraint, wrist cuffs, the latter having been used for several months on a 24-hour basis with the exclusion of eating and bathing periods.
The case of Brian Singer illustrates that aversive shock treatment is used only in exceptional circumstances and only when all other approaches have failed. Our opponents may argue that the mere fact that it is permitted may lead to its misuse. However, you should be aware that prior to its prohibition under the current legislation at any given time a maximum of only five individuals in the entire province of Ontario were receiving this treatment. Each of these individuals, like Brian, was severely self-injurious and had failed to respond to all other alternative treatments. In all cases, these were administered by regulated psychologists. I have not included this in the brief, but it's very important to note that these treatments were administered by regulated health professionals who are governed under the act and were entirely accountable for their actions by virtue of being regulated health professionals.
Furthermore, the proposed amendments guarantee additional safeguards in that the guardian is prohibited from using or giving consent to the use of shock unless such consent is given in accordance with the proposed Health Care Consent Act. In addition to legislative safeguards, there is another layer of institutional requirements that must be met and which further protect the individual who is unable to consent on their own behalf.
Currently, faradic shock is available only at Southwestern Regional Centre. At the centre, approval and monitoring of the use of faradic stimulation involves reviews by at least four separate groups: the unit resource teams, the facility level behavioural standards review committee, the professional advisory committee, the external review committee, and ministry accountability. Pursuant to the latter, the clinical director is required to submit monthly reports on all faradic stimulation cases to the operational coordination branch of the Ministry of Community and Social Services.
Further to this, any psychologist who would provide such service is regulated in the province of Ontario and governed by the Regulated Health Professions Act.
Faradic stimulation involves the application of minute electrical stimuli to the fatty tissue of the leg or arm of a person exhibiting high-risk behaviour. The stimulation units use less current than a heart pacemaker and produce a sensation ranging from a brief skin pinch to a deep muscle vibration. The side effects, if any, are minuscule in comparison to the potential side effects of the behaviour-inhibiting drugs that are often used but may nevertheless still fail to reduce the self-destructive behaviour in severe cases.
Psychological research has demonstrated that treatment in the form of aversive shock therapy may be the most effective, indeed the only effective -- and this bears worth repeating: To this point in time, this form of aversive shock therapy is in fact the only effective method demonstrated in reducing self-injurious behaviour in intractable cases. This evidence has been supported by no less a leading authority than the United States National Institutes of Health. There are, for those who wish, available from us briefs from various organizations within the American Psychological Association supporting this as well.
If severe injury to or the death of an incapable individual can be prevented with a noxious, but not harmful, shock to the arm or leg then the law should permit guardians to provide consent for its use.
At issue here is the right to effective, individualized treatment of choice. The existing legislation flies in the face of this principle. It says, if you can ask for it yourself you can get it, but if you are not capable of asking for it, well, too bad. The current prohibition discriminates against people with developmental disabilities who need treatment desperately but can't consent to it. It denies the same rights to individualized treatment that we would grant somebody else. It is ironic that those individuals who have special needs, including protection against their own self-destruction, are not allowed to have them simply because they can't express their wish or give their consent. The current legislation effectively prohibits use of a technique which is already virtually never used, thus seeking to protect people with developmental disabilities from a non-existent threat to their wellbeing while depriving a handful of people from receiving the only treatment that has documented benefit in improving their personal wellbeing and ensuring their physical safety.
The standards of practice and codes of ethics of psychology require us to act to protect our clients from harm. While we appreciate that this may not have been the intent, failure to pass the proposed amendment to remove the prohibition against consent will result in unquestionable harm to the affected individuals and their families.
Thank you for attention. Once again, we wish to congratulate the government for its courage and wisdom in proposing these amendments and we look forward to their enactment in law.
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The Chair: Thank you, Dr Hamovitch. We have approximately five minutes per caucus, and Mr Tilson and Mrs Johns wish to make representations for the government.
Mr Tilson: I don't know if you knew that or not, but Mrs Singer appeared yesterday and gave us a very effective presentation and a video on this issue. It certainly had an effect on all of us and we've had subsequent presentations who -- obviously there's a debate in the health care business. Some say we shouldn't have it at all, some say that it should only be granted with particular court orders every so many months, three months, and of course you are quite aware what position our government is taking.
Mrs Singer made it quite clear to us that the treatment that was provided to her son was done on much consultation with the medical people who assisted with it. It has been quite clear that the treatment is regulated by health practitioners who are accountable through their clinical practice and through their professional colleges.
My question is, with this controversy, is that enough? Will that satisfy the public?
Dr Hamovitch: I can answer that initially. I think if the public is appropriately informed about how the colleges regulate and what are the systems through which people can call into question their accountability, then that will be sufficient. I think like anything that involves some change, there is a need for public education. I am convinced that with appropriate public education, the public would be satisfied.
Mr Tilson: Just one following question: Why this and not others? One could ask the question, why not treat other treatments the same way? In other words, how far does one go? Obviously I support it because that's the position of our government.
Dr Hamovitch: There's a simple answer, which is, you have to look at each treatment on its own merit, you have to look at the appropriate research, you have to look at all other alternatives. That's been done in this case. I would suggest that the same kind of thoroughness be applied to any kind of treatment being considered. The answer is not, "Why not for any other treatment?" the answer is, "Well, yes, consider any other treatment with the same thoroughness with which this has been considered."
Mrs Johns: I understand that psychologists are basically the only people who are proposing this treatment and I'd like to know what kind of standards, guidelines, current reviews you have on people like Brian to make sure that this treatment is effective and is still the proper treatment.
The other thing -- I was trying to get the quotes out of Hansard, but I don't think they're far enough out -- I believe someone suggested yesterday that we would then see faradic stimulation in many of our Comsoc facilities throughout Ontario and that it would have increased use. I'd like you to comment on that also, please.
Dr Hamovitch: I would ask them why they would suspect that, given that this prohibition has been in place for only a few years. People could have done so for many years preceding and didn't. I have no reason to believe that there would all of a sudden be a whirlwind of activity in an area in which historically there has been no such whirlwind. So that argument doesn't -- I'm not sure where it comes from. I assume it's based in ignorance of what existed prior to this law. That would be my answer to that question.
In terms of the former, I think the protection is in respect to the standards of practice for psychological providers. We have very specific and strict regulations and guidelines with respect to our practice that dictate that we must protect our patients from harm in every possible way. That in fact is what is being done by use of this particular treatment modality. That is what protects all our patients, all our clients.
Mrs Caplan: Yesterday, when Mrs Singer was presenting, I mentioned that I had met with her and I was very sympathetic about the fact that her only recourse was to the minister for an exemption to the law. I felt that an absolute ban was too restrictive.
The Regulated Health Professions Act deals with the notion of risk of harm, and professionals are given our trust. However, when there is such a controversial therapy, if you want, or treatment -- and the reason it's controversial is that not everyone agrees it's a treatment. We heard presentations before this committee that suggested a contrary view.
But I think the issue is broader than just faradic therapy. It has to do with aversion therapies in general and the techniques that are used which the public has concern about. We've seen documentaries on TV recently suggesting perhaps punishment techniques, that the public would want closer scrutiny.
So the word I would use and the concern I have expressed as it relates to the electroshock therapy called faradic stimulation is, does this amendment, which removes the absolute ban, provide us with sufficient accountability. No one has suggested -- certainly, I have not -- the potential for widespread abuse or use, but what I am concerned about is that while the facility that it's available in through Comsoc has strict procedures and there is scrutiny and accountability, I would be more comfortable to ensure that there was not any expansion of the use outside of a Comsoc facility; for example, since it wouldn't be illegal to do it any more, to have written in the law a requirement for the guardian or the substitute decision-maker, or the person who would be consenting on behalf of the incapable person, to get approval from the consent board as an accountability check. As I say, there could even be an exemption from that for a Comsoc facility, where you know that you have the standards and the safeguards and the accountability in place. But I'm concerned that if you remove an outright ban, what's to stop a psychologist, or someone who's not a psychologist, from offering this in an unregulated environment?
Dr Hamovitch: Firstly, one could argue that, I suppose, a control on it is not allowing anyone to do it but simply allowing those with expertise in psychological theory and practice, that being psychologists, to be the ones who could bring about this treatment.
Mrs Caplan: It's not a licensed act.
Dr Hamovitch: If that is one restriction you might consider, then you might want to consider whether or not it should be a licensed act, which I understand is not what we are here to do today, but certainly that's something which might come under consideration.
I would not say that, on the surface of it, having had about 30 seconds to think about it, I would be against your proposal either but, again, I would say that what you would want is a board that was at the very least composed of people like psychologists who had some expertise in this area. I think it is important that when you talk about boards and people making decisions, the people making those decisions are people with expertise in the research and in the practice, and not others who might not really understand the implications of the --
Mrs Caplan: I agree, because that is the essence of accountability. You can't hold someone accountable if you don't understand what it is they're doing.
If you'd like to think about that for more than 30 seconds and perhaps suggest an amendment that you think would be appropriate, I'd be interested in seeing that from you. And the idea and the notion of this being a licensed act as an option is something else.
My concern -- and I'll be really clear about this -- I believe that if it is appropriate treatment and deemed appropriate, with all the checks and balances, for those very few individuals, there should be access. I think that access should be tightly controlled because of the controversial nature of the procedure. But having said that, I'm concerned that this legislation removes the ban and eliminates the potential for abuse outside of Comsoc facilities.
Dr Ruth Berman: If I could just add -- and I appreciate your asking this question -- I can't see how removing the prohibition could potentially result in those problems. Reference was made to the Brian Singer case, and if you know his history, we're talking about this treatment having been utilized in the absence of the prohibition. We're talking about treatment that was initiated after many, many years of everything else being tried. I think the fact that the ban is removed is not likely to result in parents consenting to this without this being in fact a last-resort treatment, with everything else having been considered. This is not an easy decision for a parent or a guardian to make.
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Mrs Caplan: I understand and I wish I had the confidence --
The Vice-Chair: Ms Caplan, we're going to have to move on now. We're going to move to five minutes for the third party.
Mrs Boyd: I'm very surprised that for the association to come in front of us this is the only issue you had to raise with a very important bill. But given that it is, I take great exception to the suggestion that the decision of the previous government was made on the basis of a very small number of people who objected. In fact, there had been very great questions asked, and asked in the Legislature of the province of Ontario over many years, about the use of this procedure. There were questions asked among treatment professionals working in facilities in other parts of the province also run by the Ministry of Community and Social Services as to the appropriateness of it.
When I was Minister of Community and Social Services, I visited those facilities to see what they did with similar kinds of cases and how they handled self-injurious behaviour and exactly what went on, and heard at first hand from them their discomfort around this, seeing it not as a treatment but as an aversive behaviour modification technique similar to many others that we've heard about in many parts of the world which have similarly been felt to be inappropriate.
The then Deputy Minister of Community and Social Services went and spent some days at Cedar Springs, in the unit, looking at what went on before any decision was made. We had strong representations from survivors of the various facilities, community living associations. There is on record a very strong recommendation by the community living association of Ontario that this be a banned practice. So I think your characterization of this as a last-minute, ill-thought-out, unsubstantiated decision is, quite frankly, offensive.
It is very clear in the discussions we had that those who are offering that treatment believe it should be more widely used and resent the kinds of constrictions and restrictions the ministry had put on that treatment. The facility is much larger than housing the number of people. When the decision was made to stop that treatment, it was in fact found that of the six people who were receiving it, only two had benefited from it in the first place.
So there are many clinical questions about the effectiveness of this particular treatment. The two issues of whether it's a treatment or whether it is an aversive behaviour modification technique -- you can get as many experts on either side to argue that. That was why the situation was there.
You claim that you see no reason why it would expand. There have been instances elsewhere where there have been requests to use that in different facilities, and that has not been allowed by the ministry.
It is certainly a very effective way of changing behaviour, but whether it is an appropriate way is something else. We've had many discussions in this country about treatments that were thought to be perfectly okay. We think of the drug experiments in Montreal, for example; we think of some of the other experiments around aversive behaviour modification techniques that have been discontinued; we think of the case in front of the College of Physicians and Surgeons where a psychiatrist thought it was perfectly fine to beat and to constrain a psychiatric client and felt that was the practice of the day and therefore it was okay.
So it seems to me that it is at least incumbent upon you to admit that there is a lot of disagreement with this particular kind of treatment and a lot of belief that if it is available for use, there is nothing to control the spread of its use. We would say that if in fact the total ban is to be removed, that there be in place very, very clear provisions for its exceptional use under exceptional circumstances so that in fact that expansion of use can't continue.
Dr Hamovitch: I don't doubt that there is much disagreement; anything controversial carries with it disagreement. The question is, who disagrees and what is their knowledge of expertise in this particular area, working with this particular group? Our understanding is that the centre for community living did not contact the Singers or speak with them about what was going on. They certainly did not contact the Ontario Psychological Association. Your office certainly did not contact the Ontario Psychological Association or the College of Psychologists of Ontario, so that, in essence, a body of expertise was not carried into the picture. If you want me to tell you that everyone's going to agree on a controversial treatment, the answer is no. That is true in every area of health care, not just when it comes to aversive stimulation. The fact there is disagreement is not a reason for either including or throwing out a particular piece of legislation.
Mrs Boyd: The colleges may not have been consulted, but many registered psychologists who are members of your college were indeed consulted and indeed have written on this issue.
Dr Hamovitch: I'd like to know what the particular expertise of those members who were consulted was in this area, because our understanding is that if you look to the experts who have done the research, who are the people living with this and using it, they are fairly united in their opinion on it. In fact, they --
Mrs Boyd: They have some vested interest to make sure that they can continue their work and their research.
The Vice-Chair: Ms Boyd, I'm afraid I'm going to have to stop the conversation there. I want to, on behalf of the committee, thank both Dr Berman and Dr Hamovitch for their presentations. We'll move on to our next one.
MARGARET RINTOUL
The Vice-Chair: The next presenter will be Margaret Rintoul from Carson, Gross and McPherson. You'll have 30 minutes for your presentation and that would include time for questions. You can begin any time.
Ms Margaret Rintoul: Thank you for giving me the opportunity to attend. Just so that there are no accusations of conflict and so forth, I am a member of the executive of the Canadian Bar Association, trust and estates, and I have been a member of the interim advisory committee to the ministry for about a year and a half, the mandate of which was to get feedback from a lot of different interest groups in conjunction with the implementation of the Substitute Decisions Act and particularly the policies surrounding the operation of the office of the public guardian and trustee.
I am here today as a practitioner. I am a lawyer. I'm in private practice. I deal primarily in the estates area and, as a consequence, in both planning for incapacity with regard to my clients and dealing with the family members of my clients who have become incapacitated. So I'm here today in the capacity as a practitioner and I'm speaking as a practitioner.
You will hear later on in the hearings from a representative of the Canadian Bar Association and there's a fairly extensive brief that's being presented. I do agree with the contents that are in it, but there are two major issues that I wanted to raise with you today.
One is on the whole concept of capacity assessors and the way they have been established and what is happening in that field right now. The Substitute Decisions Act created the concept of capacity assessors as a defined group. Essentially, the regulation that deals with them says that a capacity assessor is a person who has been deemed by the capacity assessment office to be a capacity assessor, and there's been a training course established. The applicants into that course have been from a very broad area of disciplines.
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The difficulty that I and my colleagues are encountering in dealing with cases where there is incapacity and guardianship of some description is needed is that we're faced with the necessity of obtaining one and in some cases two assessments from these capacity assessors. Because the concept is fairly new, there aren't a terrific number of these people around the province. Toronto has a good number of them. Once you get outside of Toronto there aren't all that many of them. We're faced with a lot of delay, a lot of expense and a very cumbersome process, and a lot of it could be solved relatively easily.
The thing which has been flooring my colleagues and myself is that our clients are getting charged hundreds of dollars for these capacity assessments where we, who used to do committeeship work under the Mental Incompetency Act, were accustomed to paying for reports and affidavits from medical doctors and medical specialists. We were accustomed to paying $250, $300, maybe $500 if it was a difficult case. We're now faced with the average cost of an assessment being $600 to $900 and going on up from there. In large part, it's because the capacity assessors have been drawn from a lot of different areas, they've been given guidelines as to the sorts of things they can charge for, but because it's been created as a sort of market economy, they are permitted to charge basically what they can get paid. The fact is that you're using a market economy that is very new and you're looking at tremendous cost to families, especially where you're not looking at rich people but you're looking at assessments for guardianship of the person.
I have consent from one of my clients to tell you that we got a bill for $800 for the assessment of a lady who has been in a nursing home for eight years and virtually comatose. It still cost $800 for a psychologist to attend at the nursing home and decide that this lady needs a guardian. When you compare that with her family doctor who sent a separate $50 bill for a letter saying, "In my opinion this lady needs someone to make decisions for her," I have to wonder whether the whole concept of having capacity assessors outside of the medical practitioner field is serving anybody's purposes.
The recommendation that I would put forward, and some of my colleagues share it -- not all of them, but some -- is that there is a lot of good sense involved in allowing a broader classification of medical doctors to be capacity assessors without additional qualifications and training. There are certainly a large number of the medical profession who don't want to do capacity assessments, and there shouldn't be anybody who forces them to do so, but the notion that the only people who can do capacity assessments which will be accepted under the Substitute Decisions Act are those who have gone through this one-week training course and are then designated as capacity assessors is placing an unnecessary burden on the population when these assessments are required.
My recommendation -- and this could be implemented quite readily through regulation -- would be that certain specialty groups within the College of Physicians and Surgeons should be automatically authorized to be capacity assessors. I would suggest that neurologists, psychogeriatric specialists and psychiatrists ought to be able to do capacity assessment reports. Their evidence is accepted on court applications in any event, even though they're not capacity assessors under the lists that the assessment office sends out.
My recommendation is that the this whole concept of capacity assessors, if this capacity assessment office concept is going to continue, those who are eligible to make assessments for purposes of the act, needs to be vastly broadened.
I know there's been a lot said about the fact that it shouldn't just be a medical model, that capacity covers a whole range of things. I would support the notion that there are people outside of the medical community who can make capacity assessments. But for the vast number of cases where guardianship is necessary, where it is an elderly person, it's a senility, it's a dementia and it's largely a medical diagnosis, there isn't a great deal of need to go beyond the medical doctor's opinion in order to determine that someone has to take care of this person who has had a massive stroke or who is suffering from Alzheimer's or dementia.
My second element that I'd like to address is the whole issue of the simplification of statutory guardianship. The amendments to the Substitute Decisions Act do go a good deal of the way towards eliminating some of the bottlenecks and the complications that were built into the Substitute Decisions Act.
My recommendation, for what it's worth, is that there needs to be one further step. Under the Powers of Attorney Act it was possible for someone making a power of attorney to specifically include a clause in the document ousting the public trustee from management of their affairs, should they become patients in a psychiatric facility under the Mental Health Act. It was a relatively simply process, when one of those powers of attorney existed, for the person who held that power of attorney to notify the public trustee: "Yes, my father's been committed to this hospital. Yes, I know you're a statutory committee. I have a power of attorney which overrides your authority. Here's a copy of it. I take control." That was an established practice.
The amendments to the Substitute Decisions Act which say that statutory guardianship will not be imposed where there's a known power of attorney and that allow the public guardian and trustee to be replaced more easily as statutory guardian goes a long way, but I'm still hearing from clients: "Can you give me a paper to sign that will mean that the public trustee won't take control of my affairs? I want something that keeps it right out of the government's hands." I have heard that many times.
My recommendation is that there still needs to be some mechanism whereby a power of attorney can be given that specifically states, "In the event that I become mentally incompetent or incapacitated, I have nominated this attorney to take on my affairs and I do not want the public guardian and trustee to be my guardian."
If there was some sort of provision like that and the person who holds that attorney could obtain an assessment to certify that the person is now incapacitated, and from there on the documentation that provides that attorney's authority to operate is the power of attorney plus the certificate of incapacity, then it could be handled privately. The public guardian and trustee's office is not going to be involved in that case, other than perhaps to maintain a record of the fact that this exists. If a client says, "Give me a paper to sign that means that my daughter can manage my affairs and the government won't get involved," I will be able to provide that client with that document. I don't believe it's a great stretch to go one step further, from where the act is currently sitting with the amendments, and allow a power of attorney that specifically ousts the public guardian and trustee.
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I think also it would break the bit of bottleneck that is still there, even under the new amendments. One of the big drawbacks with power of attorney -- it's been there for years and it's still there -- is a power of attorney that is not stated to take effect on incapacity but a power of attorney that's good from day one. That does not prevent the donor, the person who gave it, from taking any steps they want to as well. The only thing that prevents the donors from taking steps on their own financial affairs is being declared to be incapacitated.
We've got a bit of a bottleneck still in the system where an assessment for statutory guardianship is not to take place unless there is no known power of attorney, which still leaves the attorney faced with an aging relative who is losing his memory, needs care, needs some control on his finances and can't be stopped from pulling large amounts of money out of his bank account. The attorney can't say to the bank, "No, you can't give my father any money," because he's still legally entitled to do so. There's no capacity assessment that says he's incapable; there's no court order, there's nothing. There is only a power of attorney that says, "Yes, I can sign cheques for my father, but he can sign his own cheques too."
If there was something to the power of attorney which permitted the attorney to totally override the public guardian and trustee, and there is a regulation under the Substitute Decisions Act which allows an attorney to seek an assessment, and an assessment given and a certificate of incapacity given to that attorney essentially makes them a guardian, then you could take the public guardian and trustee's office out of the loop except for perhaps maintaining a record that this has happened. But they wouldn't have to get directly involved. You wouldn't have the time on the intake side at the public guardian and trustee's office to assess who is entitled to do this and who is not. Clients would be able to handle things privately, but you would have the ability, on an ongoing basis, for attorneys to deal with their aging relative's affairs with a great deal more certainty, basically.
Those are my points. I'm happy to deal with questions.
The Vice-Chair: Thank you, Ms Rintoul. We will deal with a few questions now. Each caucus has about five minutes and we'll start with the Liberal caucus. Mr Grandmaître.
Mr Grandmaître: In your first recommendation you say that certain specialty groups should be trained to become capacity assessors. We had another group just before you that said all health practitioners should be trained to become capacity assessors. Can you elaborate, when you said certain specialty groups, on how many groups there would be?
Ms Rintoul: I guess my initial reaction to that would be that family practice practitioners, neurologists, psychologists and those in the geriatric specialties, the psychogeriatric specialists, would be the most obvious choices. I would say those who are members of -- I'm trying to remember the name of the college -- the clinical psychologists ought to be able to do this as well. They're not medical doctors but they're certainly more than adequately trained in that area.
Mr Grandmaître: In other words, you do agree that health practitioners should be trained to become capacity assessors?
Ms Rintoul: Are you saying all medical practitioners?
Mr Grandmaître: Yes.
Ms Rintoul: I would question whether all medical practitioners in all specialties would want to be capacity assessors. A good number of them would decline to be.
Mr Grandmaître: It's not whether or not they want to but whether they should be trained to do it.
Ms Rintoul: I would not oppose the notion that they should all be trained. I think it would be very difficult to make sure that every medical doctor in the province is trained to be so. That's why my suggestion was narrower and focused more along the lines of those whose specialty training deals in those areas anyway.
The Vice-Chair: We have time for one more question.
Mrs Caplan: You raised the issue of fees. That's something we hadn't discussed before the committee before your presentation: What's an expectation or a reasonable cost for a capacity assessment, and should that be set by regulation so that there isn't gouging going on and the people know in advance what to expect if they're going to require these kinds of assessments? Certainly, I think people would like to know what the costs are.
Ms Rintoul: Right now what is stated is a certain number of guidelines for the assessors. These are guidelines that the capacity assessment office has put out for its own assessors, to my knowledge, and it is something of a marketplace rule. The recommendations are, when you make the arrangements yourself as an applicant or as a solicitor with an assessor, negotiate what the fee is going to be, but that's not always possible. If there are only one or two people in the area where your patient or client lives, then you're stuck with those people and you're stuck with the kinds of fees they're going to charge.
Mrs Caplan: What's the range?
Ms Rintoul: The statistics that are coming out from the capacity assessment office are that the average is running $600 to $900 per assessment.
The Vice-Chair: I want to ask you to hold there. We're going to have to move on to the third party now and you'll have five minutes. Mr Marchese.
Mr Marchese: The issue of the cost also struck me, because nobody raised this before in this committee. We simply assume these things happen and that naturally there are costs attached, but no one questions what that might have been. It could be an inordinate sum to some people, so that's an issue.
You also raised the issue, could we do assessment in some cases which would involve other practitioners and reduce the number of people who would have to be on that assessment doing the capacity review? By so doing you could cut the cost, I think is what you --
Ms Rintoul: No. My point is that there ought to be more, not fewer.
Mr Marchese: More, right. I was interested in that and I wondered whether the ministry staff would, not at this point but at some point, have a response to that. I thought that was a useful suggestion you were making.
You raised another point in number 2 that I was interested in, "This objective could be achieved fairly simply by permitting the preparation of a power of attorney which specifically ousts the public guardian and trustee." That seems simple enough. If somebody requests that, why not prepare such a document that would permit that to happen so that the public guardian and trustee is out of the picture?
Ms Rintoul: It would be very nice to be able to do so, but I don't think the statute lets you.
Mr Marchese: I understand, but I have a concern I want to raise with you to see what your response would be. In situations where a person might be forced by the guardian to do that, who might have been capable in the past, but there could be possible abuse, and the public guardian and trustee in that situation, if he or she were involved, would see that there is a problem and would be able to intervene, if that person is out of the picture altogether, doesn't that eliminate one more person who could detect a possible abuse situation?
Ms Rintoul: I don't know that the way you've got it set up now is going to do that anyway, because right now the person who is named under a power of attorney has total priority in becoming statutory guardian, and the original SDA as it was drafted left some ability by the public guardian and trustee to say, "No, we won't give up guardianship to you, attorney." But the situations where they could do it were very limited and the amount of knowledge they would have to be able to say that was very limited, so for practical purposes there wasn't much they were going to do.
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In the amendments now, which are going almost to the "shall" instead of the "may," if there is an attorney who has power over all assets, they have an absolute ability to become the guardian. An assessment is not going to take place if there is a known power of attorney. That's written right in. And if an attorney comes out of the woodwork after statutory guardianship, the public guardian and trustee gives up guardianship to that person.
I don't know that that's a great deal more safeguard than allowing someone whom you have to -- if the problem is, was the attorney valid in the first place because the person lacked the capacity to give it, then that's another problem altogether, and that's not solved by any of the tinkering with the legislation; that's an issue of, is the thing valid to begin with?
The Vice-Chair: Ms Rintoul, thank you. I want to move on now -- we're on a tight schedule -- to the government side.
Mr Tilson: Just to follow along with the line of questioning that Mr Grandmaître raised with the issue of assessors, section 60, I think it is, page 33 --
Ms Rintoul: You're talking about the original act or the amendment, the bill?
Mr Tilson: The amendment.
Ms Rintoul: Okay.
Mr Tilson: It would allow the government to control the fees of assessors that can be charged for that service, and that has to be remained, of course, because those regulations have yet to be introduced. With respect to the process of training, the designating and the training of assessors and who the assessors should be, I think we agree that there is a need to examine that specific system and your point is certainly well taken, although -- and this may have been partially asked before, whether or not your concern would be eased if the regulations defined assessors as including practitioners and including other types of caregivers. I suppose if a physician didn't want to be necessarily an assessor, well, he or she didn't have to be.
Ms Rintoul: No.
Mr Tilson: But at least it designates them as that, and there obviously needs to be, as I indicated, before you get to that stage, some sort of process for training those assessors once you've designated them. I suppose my question is, would your concerns be eased if regulations were put forward in that way?
Ms Rintoul: I believe that most of these concerns can be addressed by regulation, yes, because the determination of who the assessors are, how they're trained and any sort of fees and so on, as you say, the ability is there now, or will be there, to deal with this by regulation. I think part of my points here are maybe to try to get a bit of a foot in the door on what sort of regulations you consider making.
Mr Tilson: An age-old question, I suppose, but it's certainly something that we're continuing to work on. Obviously there's a need in that area, to determine those issues.
Dealing with the second question you raised, with respect to the statutory guardianship and replacement, my understanding is that subsection 8(2) of the bill removes the clause which will cause the power to be terminated if the official guardian and trustee is appointed. That may alleviate your concern. Section 10 goes on to amend section 15 to say that the official guardian and public trustee is ousted automatically if a power of attorney is presented. I think that's set out in section 10.
Ms Rintoul: Yes.
Mr Tilson: I don't know whether that -- it may be I don't understand your question.
Ms Rintoul: I'm looking at a little bit broader question here and it deals in part with what a power of attorney is and can do. What the Substitute Decisions Act brought in as a relatively new concept was what they were nicknaming a springing power of attorney, which you could say, "This power of attorney will come into effect only in the event of my mental incapacity." It was a fairly new concept; people have been trying it, but this enshrined it in the legislation.
The policy that was developed in the PGT was to say: "Okay, for that type, we're not even going to let anyone other than the attorney request an assessment except in very extraordinary circumstances and the assessment statement will be given to the attorney. They will then be able to take over dealing." That's fine, but most powers of attorney are not drawn to come into effect only in the event of incapacity, and myself, for one, and a lot of my colleagues don't recommend that people make them that limited because there are lots of cases where an individual needs a power of attorney and the assistance that it can give, even if they are still mentally capable.
The issue, then, becomes, okay, you've got somebody helping out under the power of attorney. The individual can still sign their own cheques and do their own banking and withdraw money from their account, too, which causes its own problems, because as an attorney, you can't tell the bank, "Don't give mother any money," because it's still hers, even though she's taking it out in large gobs and you don't know what she's doing with it.
The problem that we're facing right now still is that you cannot get the statutory guardianship brought into place if the power of attorney exists, because that's the new amendment, saying we won't assess if there's no power of attorney --
The Vice-Chair: Ms Rintoul, I'm sorry, I'm going to have to stop you there. The time has expired and we have to move on. On behalf of the committee, I want to thank you for your presentation. It was certainly helpful.
NATIONAL TRUST CO
The Vice-Chair: Our next presentation will be Mr Glenn Davis from National Trust. Mr Davis, you have 30 minutes, and that will include time for questions.
Mr Glenn Davis: Thank you. I have submitted a very short formal submission. I work at a trust company. There's nothing unique about our concerns that pertain to National Trust. I think our comments could be generic to our industry because we run into these problems -- powers of attorney, incapacity issues -- in multiple contexts.
First of all, our retail branch systems deal extensively with clients, with powers of attorney presented by family members and other rogues and con men, so we have a lot of concern from our retail people who are trying to protect our depositors. Secondly, we of course are a creditor of people who lose their capacity and become vulnerable. Lastly, I happen to work in the part of the company that acts as executor and trustee and indeed guardian and committee of individuals and power of attorney for individuals. So we see these things in many different contexts.
Generally speaking, the Substitute Decisions Act was a great, welcomed piece of legislation to us, expanding the powers of attorney flexibility, but in a practical sense, we do strongly support some of the amendments, and I guess I'm here to request, in a polite sense, some other relatively minor ones.
My biggest endorsement, if I can, is the amendment taking away the witness statement about the opinion. I'm sure this is not novel. We in fact have instructed our staff not to act as witness on powers of attorney that have this witness statement on it. We are so concerned about the fact that it must mean something and yet nobody can tell us what it means. My own training as a lawyer leads me to read it as implying that the witness has formed an opinion about the grantor's capacity, and in forming that opinion, I think they have to act reasonably. They can't be oblivious or wilfully blind to possible reasons why they couldn't give a power of attorney.
My concern here is that lay people and friends and relatives innocently acting, trying to help by being a witness, may be actually undertaking personal liability for acting as a witness. Certainly if I was in public practice and was litigating a rogue's activity, I would join in the witnesses just so I would have the opportunity to find out what they knew about the person's mental status when they signed the power of attorney.
I know that some very large, reputable law firms insist that their secretaries, who are going to witness the document, sit through extensive portions of the interview where the client's capacity is determined, so that the secretary is present when questions are asked founding the capacity of the client, so they can later sign the document in good faith. It's a very strong statement. We have no reason to doubt the power to give the power of attorney.
I certainly agree with and understand the desire that witnesses should be cautioned in some fashion to advert to this issue. If that's a policy consideration, I don't have any problem with that. And maybe I'd just toss away the comment that a statutory form of warning to the witness might be sufficient, because that would be a different kind of a thing than what I read as a bit of a warranty by the witness.
In any event, it is certainly a practical problem. If the policy consideration is to make access to these forms easier and cheaper, this witnesses' statement has in fact had the contrary effect.
On a related topic, the expanding of prohibited witnesses, the classes of prohibited witnesses, has had a similar effect. Because of a certain degree of healthy paranoia about who can and cannot be a witness, questions have now been raised, to me directly and indirectly, about whether an employee of a trust company can witness a power of attorney naming the trust company as the attorney. We have many, many clients who have chosen to give a general power of attorney to the trust company, sometimes in preference to family and friends, sometimes because they have no family and friends. To now retroactively raise the uncertainty that these documents are valid is a huge, practical problem.
I think it is a topic that competent lawyers can debate both ways. The attorney named is not the witness. The employee is not the attorney, and in my little submission, I suggest that on a policy basis, it should be made clear that this is not a problem, because trust companies at large are so regulated and audited and have management controls and all kinds of internal controls which make it almost impossible for employees to take advantage of clients' property. The attorney itself, the trust company of course, is never a beneficiary of -- well, I can't remember a client making us a beneficiary under their will, for example, and it's so rarely that we're accused of stealing the money, except in a discussion about fees, that it's not really a policy consideration.
Interjection: It's a small exception.
Mr Davis: A small exception.
So you would do the trust industry and clients a great service through some minor amendment, if there's some way to be found, stressing that where a trust corporation is named as the attorney, an employee is not disqualified from being a witness for that reason.
I guess the underlying theme maybe I'm driving at here is that throughout this legislation, the focus to me seems to be on individual persons, as opposed to corporate persons.
The Vice-Chair: Mr Davis, I'm sorry I'm going to have to interrupt you. As many of you are aware, there's a protest going on outside. Security has asked us at the very least to recess for one hour. So it's up to the committee really. We can either recess for the one hour or we can adjourn and try and reschedule.
Mr Tilson: I don't think we have any choice. If we adjourn an hour, you're after 5 o'clock.
The Vice-Chair: It's after 5, yes. Okay, so we will adjourn then.
Mr Tilson: That's too bad. How will we leave it with this particular witness?
The Vice-Chair: I understand that, but security has been adamant that they do want us to --
Mr Tilson: Are they asking us to leave immediately?
The Vice-Chair: Yes.
Mr Marchese: If he could finish his comments, perhaps that would be something that we could do?
Clerk of the Committee (Ms Donna Bryce): How much time --
Mr Davis: I can wrap up in two minutes.
The Vice-Chair: Okay.
Clerk of the Committee: We can ask you to come back, if you'd like.
Mr Davis: That would be fine too, if it doesn't throw your schedule out. I'm in your hands here.
The Vice-Chair: I think it would be unfair to you, actually, if you were asked to wrap up in two minutes without a question period.
Mr Davis: I'll be happy to be rescheduled.
The Vice-Chair: Okay. We'll do it that way.
Do we have unanimous consent then to adjourn until tomorrow morning at 9 am? Is that a yes? Okay. They're requesting that you leave through the Whitney Block as well.
Ms Johns: Do they want us out of the building?
The Vice-Chair: Out of the building, right.
So we're adjourned until tomorrow at 9 am.
The committee adjourned at 1605.