ONTARIO ASSOCIATION OF MEDICAL DIRECTORS IN HOMES FOR SENIOR CITIZENS
ONTARIO NURSING HOME ASSOCIATION
MOSHE
GREENGARTEN
DONALD STUSS
DAVID CONN
CONTENTS
Wednesday 19 February 1992
Advocacy Act, 1991, Bill 74, and companion legislation / Loi de 1991 sur l'intervention, projet de loi 74, et les projets de loi qui l'accompagnent
Ontario Association of Medical Directors in Homes for Senior Citizens
William G. Ellyatt, board member
Ontario Nursing Home Association
Carla Peppler, director, resident care
Fran Bouchard, member
Deborah Wall-Armstrong, member
Physicians for Life
Carmelo Scime, member
John Meenan, member
University of Ottawa
Cynthia Petersen, professor
Judith Snow
Moshe Greengarten; Donald Stuss; David Conn
Stanley Woronko
York Support Services Network
Penny Hubbert, board president
Louise Paul, executive director
Karen Hirstwood, program manager
Robert Walsh
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Akande, Zanana, L. (St Andrew-St Patrick ND) for Mr Morrow
Cunningham, Dianne E. (London North/-Nord PC) for Mr Sterling
Marchese, Rosario (Fort York ND) for Mr Fletcher
Phillips, Gerry (Scarborough-Agincourt L) for Mr Sorbara
Also taking part / Autres participants et participantes:
Fram, Stephen, Ministry of the Attorney General
Spinks, Trudy, Ministry of Citizenship
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1006 in committee room 1.
ADVOCACY ACT, 1991, AND COMPANION LEGISLATION / LOI DE 1991 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Resuming consideration of Bill 7, An Act to amend the Powers of Attorney Act; Bill 8, An Act respecting Natural Death; Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / Projet de loi 74, Loi concernant la prestation de services d'intervenants en faveur des personnes vulnérables; Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care / Projet de loi 108, Loi prévoyant la prise de décisions au nom d'adultes en ce qui concerne la gestion de leurs biens et le soin de leur personne; Bill 109, An Act respecting Consent to Treatment / Projet de loi 109, Loi concernant le consentement au traitement; and Bill 110, An Act to amend certain Statutes of Ontario consequent upon the enactment of the Consent to Treatment Act, 1991 and the Substitute Decisions Act, 1991 / Projet de loi 110, Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1991 sur le consentement au traitement et de la Loi de 1991 sur la prise de décisions au nom d'autrui.
ONTARIO ASSOCIATION OF MEDICAL DIRECTORS IN HOMES FOR SENIOR CITIZENS
The Chair: I would like to call forward our first presenter, from the Ontario Association of Medical Directors in Homes for Senior Citizens. Good morning. Just a reminder that you have a half-hour for your presentation. We would appreciate if you would limit your remarks to 15 minutes and allow time for members to ask questions or make comments.
Dr Ellyatt: I will do the best I can.
The Chair: As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Ellyatt: I am Dr William G. Ellyatt. I am medical director of the Dearness Home in London and I am a member of the board of directors of the Ontario Association of Medical Directors in Homes for Senior Citizens.
Several brief comments about Bill 108, the Substitute Decisions Act: First of all, our association agrees that there is a need for this act in some circumstances, but we are very concerned, both as physicians and as medical directors in homes for the aged, about the act and its consequences for some of the people we care for, given the very large number of Alzheimer's victims presently residing in homes for the aged in the province.
Most people in Ontario will not bother to appoint an attorney for personal care ahead of the time of need. Consequently the courts are going to be needed to appoint such attorneys, and there will be a large number of people needed both to act as attorneys and as advocates, particularly the latter.
The first question we have is, who is going to pay the advocates? The public trustee's office will probably have to expand or be swamped with decisions regarding care for Alzheimer's victims alone. I would remind you that it has been forecast that at some time in the foreseeable future, probably in the next 25 years, the increase in the number of Alzheimer's victims alone could bankrupt the entire North American health care system.
How are the advocates going to be contacted out of hours? Who will act if the designated advocate or attorney is on vacation or incapacitated or otherwise unavailable? It is a big question in our minds. Unfortunately, crises in care do not often occur during so-called office hours and all too often they will not wait until office hours begin.
With regard to sections 44 and 45, how is it that a person 16 years of age can act as an attorney for personal care but cannot vote? I think this is something that the law should take a look at.
The process of appointment of an attorney for personal care is rather cumbersome and time-consuming as it is outlined in the proposed act. It will likely be very expensive. It will likely involve the services of at least two lawyers plus court time and all the costs that go with that. Who pays for all the legal time? And note, please, that OHIP will not pay for third-party medical costs such as the preparation of a report by an attending physician. Are these costs going to be billable to the person being assessed for competency, who may not be able to comprehend what he is being billed for and at the same time may not have the funds to pay for such a billing?
Under section 56, what is going to happen to research and to treatment for various psychoses, dementias and in particular Alzheimer's dementia if a promising treatment for these particular diseases cannot be tried out?
There are few psychotics and even fewer Alzheimer's victims who will consent to try a new drug, no matter how promising that particular drug might be. Section 59 offers still further work and further cost to the public trustee's office in such circumstances.
Under subsection 59(5), the explanation by an advocate to serve an Alzheimer's victim is an exercise in futility. The person may be able to comprehend at this moment, but not five minutes from now, just exactly what is going on. In my experience persons in some advanced cases do not know what day of the week it is, whether they are existing on one day of the week, where they are etc. To put it as was said to me at one time, they often do not know whether they are a horse or a foot. It is often like trying to talk to a blank wall.
Under section 63, what I have just read out applies equally vis-à-vis the guardian's duties.
Under subsection 63(7), it would be very helpful if the law could ever define what is known as a restraint. This has never been defined in medical-legal terms. It would be helpful if the Attorney General's office could define it. Is the use of two bedrails a restraint? How about a brightly coloured jacket to identify an Alzheimer's victim who wanders? How about a seatbelt on a wheelchair or even a table across a geri-chair? These are important things to know. Can we put a safety belt on a person in a wheelchair? We have to in an automobile.
Under section 64, referring to the annual report by the attorney for personal care and the guardian, what will be the penalty for not completing the annual report? Who is going to monitor these particular reports and read them well? How much extra staff is going to be required for that particular item? I would point out to you that in the municipal home over which I am medical director there are currently over 300 people who may require such a report and the number is growing annually. Under the current outline of the act the administrator of the home and the people who work for the home are excluded from being either attorneys or guardians.
The procedure under the guardianship section is just as detailed and just as cumbersome as that under the attorney for personal care and, I would point out to you, a further added heavy court cost.
Under subsection 72(4), the time limit for a medical assessment is set at six months. This works well for a person who has a chronic, ongoing mental illness. But the need often is right now, not in six months, so what do you do if the person who has an acute dementia needs treatment? People change rapidly, sometimes depending on trauma, health medications etc. What holds for this moment may not hold for three months from now. The time limit seems rather excessive.
Furthermore, notation is made that there are two assessors necessary: one a medical doctor and another an independent person. Who pays the other assessor, even if OHIP would pay the doctor who is filling out the report?
Under section 74, again about the advocate, if the person will not listen to the advocate then it is back to the courts. I might point out that the civil courts already seem to have a backlog of multiple months. Will the courts be empowered to sit at night, late afternoon or early morning at a time when necessity dictates that they should? I know from personal experience that sometimes courts will ask for detailed reports on less than 48 hours' notice. How can these be turned out? It takes a reasonable length of time to make an examination, dictate a report and have it typed, copied, distributed etc. When we are dealing with someone's long-term mental health and physical needs, 48 hours is often not enough time to assemble all the data necessary.
The OAMDHSC is most concerned about the position in which attending physicians will be placed if this act is passed into legislation in its current form. Hospitals, homes for the aged, nursing homes and so forth are similarly concerned. If a person who has a guardian or an attorney refuses to be bathed, groomed, toileted and so forth, will it take a court order to be able to proceed under such circumstances?
It certainly will not be a surprise if emergency surgery is needed, because it is going to take time to come to a decision as to whether or not emergency surgery is needed. Two doctors can sign for that, of course, but elective surgery is another major problem. The same thing holds for illnesses that would require such things as oxygen, intravenous therapy, nasogastric tubes and even catheters. The main concern of our group is: What happens on a day-to-day basis? How long will it take to get the informed consent under rather difficult circumstances?
I would be pleased to try to answer any questions you might have.
Mr Poirier: Would you be ready to provide a list of detailed amendments you would like brought forward that would address your concerns? It is relatively easy for us to understand how it can affect you in your everyday life, but maybe you could sit down with your colleagues and specifically point out and provide us with some material as to what you would like to see so that your everyday life and your mandate, where you work, are not adversely affected in the way you perceive that the current bill or bills, as they go forward, will cause you more problems than bring solutions. Could you comment on that? Would it be possible for you to do? Do you feel comfortable with that?
Dr Ellyatt: Not being a lawyer, it is a little difficult.
Mr Poirier: That is an advantage.
Dr Ellyatt: Perhaps we would not come up with a few pages of legalese that would be hard to interpret, but --
Mr Poirier: That is right. We would understand what you are saying.
Dr Ellyatt: What sort of time limit would you be placing on us?
Mr Poirier: In the next couple of weeks. It is the number eight priority, as per the list that was leaked yesterday, for the government legislative process. It being number eight, at the rate they are working you have lots of time. I would not want to give you an exact figure, but at your earliest convenience would be appreciated.
Dr Ellyatt: We can attempt it.
Mr Poirier: I think it is important.
Dr Ellyatt: I have not seen the list. I did not get a chance to read the paper this morning before leaving home.
Mr Poirier: Fair enough. I can provide you a copy. Even the government members could now provide you a copy, because we gave some copies yesterday for them to see, you see. It is the number eight priority and it is not going to be tomorrow morning, but I think it would be important if you could sit down and look in detail at the bills and identify the points that you feel are going to cause some particular problems in your everyday mandate. If you could specifically identify them and make some suggestions, we will seriously consider them.
Do not hesitate to give a copy of that to the government members. They like to get copies of what amendments they should bring forward. If the government members want to bring forward the amendments, we will be most grateful.
Dr Ellyatt: To whom should those be addressed?
Mr Poirier: You can address them to Ms Freedman, the clerk for this committee. This way at least it will be non-partisan when we make certain that all of us get some copies so that we can have a look at your suggestions for amendments. I think that is very important because you think you are going to be affected in your mandate by these proposed bills as they now stand.
I think it is important that you take the time to have a good look at them. Do not worry about the legalese. Bring it forward and we can operate and make sure that your concerns are addressed as much as possible to make these bills -- because they are going to come out. This is a majority government. But we will try our best to make sure the proposed amendments you would want to see in there so you can do the mandate you and your colleagues care to do will be brought forward as much as possible.
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Dr Ellyatt: If we could come up with some suggestions that make the bill at least workable.
Mr Poirier: That is exactly what I am asking you.
Dr Ellyatt: Because as we see it now, it is totally unworkable and cumbersome.
Mr Poirier: I could not have said it better myself. See? You are not a lawyer and your message and your answers are very clear. You said in 25 words or less what I have been trying to tell you for five minutes.
Mr J. Wilson: Sir, I appreciate the comments you have made. Many of the points you brought forward have been brought to our attention previously, but it is necessary in this day and age to drive the points home. I did take some notes, and I am curious. One of your first comments was that you note that a person 16 years of age is of age to become an attorney for personal care. Did you have some thoughts on what an appropriate age would be?
Dr Ellyatt: I grant you there are some who have a very elderly head on very young shoulders at age 16, but I have seen a lot of people who really did not have enough insight into a situation or what is best for a relative to be able to act even at age 18. However, my feeling would be that even at voting age a person probably could act with more knowledge aforehand than a 16-year-old possibly could. As I say, there are 16-year-olds who are wise beyond their years, I will grant you that, but I would guess that very few of them would want to take on the responsibility of second-guessing a person's future.
Mr J. Wilson: I appreciate that. I think that is all for now, Mr Chairman.
Mr Morrow: First of all, Dr Ellyatt, I would just like to thank you for taking the time out of your busy schedule to appear before us, and I want to pick up on something Mr Poirier was talking about. As a government member I feel it is really important that you give us your proposed amendments so we can have a look at them. I would not worry about them being too legal. We have legal counsel who can reword them and things like that. That is what these public hearings are all about: so we can hear witnesses and we can make, hopefully, the proper amendments you and the public want. I just wanted to make that comment.
Mr Winninger: I too would like to welcome you here today. I know the facility you run very well since it is right across the street from my own constituency office in London. I have toured it. I know you do a lot of good work with Alzheimer's patients, and that is why I can understand the concerns you have shared with us today.
I do not know if it is any reassurance to you, but we have had some clarification on section 15 of the Consent to Treatment Act indicating that that section, as far as research on people who lack capacity is concerned, is really status quo neutral. It does not change the existing arrangements with regard to consent to research.
I would also suggest to you that our guardianship procedure, however cumbersome you may find it under Bill 108, does address the need you have expressed so well of Alzheimer's patients who lapse in and out of capacity to have someone who does have a more permanent form of guardianship who can consent to treatment on behalf of people who lapse in and out of consent. I think that might prove of some comfort to you ultimately.
You have covered a number of different technical points and I too would like to see them presented in writing in whatever form so we can consider those suggestions when we move to clause-by-clause.
Ms Carter: You were not specifically targeting the Advocacy Act, Bill 74, but the concept of an advocate that is delineated there is consistent, I guess, throughout the three bills. Now, you said if a person does not listen to an advocate, then it is back to the court. This seems to suggest that maybe you have misunderstood what the role of the advocate is supposed to be. The advocate is to listen to the patient or the vulnerable person and not the other way around. It is not the advocate's job to make any kind of decision for that person.
Dr Ellyatt: It was my conception that the advocate was at least to explain to the individual what is happening, why it is happening, and then to receive from the individual some sort of consent or refusal of consent. Certainly in the original bill, all 270 pages of it, it was rather clear that when a person had the problem explained to him, if he said "no way," then it was back to the court for the advocate to be told to go out and see the individual and explain it again.
Ms Carter: Maybe we could ask counsel to elaborate on this point.
Ms Spinks: It may be an issue that Mr Fram wants to address since I think we are talking about Bill 108, but as I understand it, the advocate is to give the person the explanation if he has been assessed by the assessor as incapable and then give a report -- if we are talking about statutory guardianship -- as to whether the person objects to the guardianship. That is a very simple procedure. Thereafter the advocate is out of the picture. I think the presenter is perhaps correct in that if the individual does object, then the roule is for the individual who would like to obtain guardianship for that person to apply to the court.
The Chair: Dr Ellyatt, on behalf of the committee I would like to thank you for taking time out this morning and giving us your presentation.
ONTARIO NURSING HOME ASSOCIATION
The Chair: I would like to call forward our next presenters, from the Ontario Nursing Home Association. I would like to remind you that you have half an hour for your presentation. We would appreciate it if you would limit it to 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Ms Peppler: Thank you for giving us the opportunity to discuss our concerns about the proposed advocacy system with you today. Three of us will be presenting the Ontario Nursing Home Association's concerns. Fran Bouchard, at the end, is a nursing home administrator and has much experience with the day-to-day issues regarding consent to treatment and competency. Next to me is Deborah Wall-Armstrong. She is a lawyer and nursing home owner and she too has much experience with these issues from both a legal perspective and an owner's perspective. I am Carla Peppler. I am director of resident care at the Ontario Nursing Home Association and I help members with these issues on a daily basis.
We have divided our presentation into two parts. The first part will be a review of the current resident profile and a discussion of the future profile in light of the redirection of long-term care. Second, we will highlight some of the major concerns outlined in our brief.
Let me start by describing our current resident population. Seventy-five per cent of our residents today are severely to moderately cognitively impaired. This means they have difficulty making decisions. They are not oriented to time, place, person or event. This means they often do not know who they are, where they are or what time of day or season it is. They are unable to form judgements and they do not know how to evaluate risk. So we see behaviours such as eating plants, eating napkins, wandering away from the facility, smoking unsafely, those kinds of things. They are unable to follow instructions. In fact, even simple tasks such as brushing their teeth become very difficult for them. What staff have to do with something like that is put the toothbrush in their hands, give them the toothpaste and tell them to put the toothpaste on the toothbrush. You then have to direct them to put the toothbrush under the water, put the toothbrush in their mouths and then show them almost how to brush their teeth, and you have to do this every time they need to brush their teeth. Their memory is often impaired and they are not capable of learning new skills or information.
Fifty-four per cent of our residents have behaviour problems such as aggression, wandering, hoarding, screaming, that kind of thing. Often these behaviours impact on the quality of life of other residents. For example, their property is taken, their environment is noisy from the constant screaming or moaning, and unfortunately, sometimes they are victims of an aggressive act by another resident.
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Eight per cent of our residents are unresponsive in that they are unable to communicate at all. This could be because of a stroke or they could be semicomatose. What this means, however, is that staff are unable to confirm that resident's wishes or preferences.
Sixty per cent of residents have difficulty communicating, either because of a psychosis or an aphasia, which is a type of problem you get after you have a stroke. They may have a language barrier or they may be unable to transmit or understand communications because of diseases like Alzheimer's. For example, with Alzheimer's disease they often hear the words you are saying but they are not able to interpret them and put a meaning to those words.
Last, 20% of our residents have no family or next of kin, and these residents require even more staff time for social, family-type support.
With the proposed changes resulting from the redirection in long-term care we are going to see an increase in the number and severity of cognitive impairments. This means theoretically that 100% of nursing home residents will require substitute decision-makers for personal care. More residents are going to have behaviour problems, probably a lot more aggression, and these behaviours are going to impact on the rights of other residents. We can foresee an increase in advocacy services to determine which residents' rights supersede.
More residents are going to be bedridden, thus increasing the number and severity of medical conditions and problems such as pneumonia, skin ulcers, urinary tract infections, even choking. This means residents will be sicker and require more medical interventions, possibly on a daily or even hourly basis.
The residents' length of stay is going to decrease as residents are going to be coming into our facilities at a much sicker and frailer level. This in turn will result in an increase in the number of admissions.
We will probably see even less family involvement and support. In fact, what we are starting to see now is two generations of the same family coming into our facilities. You will have mom at 96 and daughter at 75.
In general, you are going to see care levels increasing as the residents' need for care from staff becomes quite total. These changes in our resident profile will affect who will require the services of an advocate and who will require substitute decision-makers. Currently there are 30,000 residents in Ontario nursing homes. As the majority of residents are currently cognitively impaired, the demands on the proposed system will be great. Remember that the future resident will be even more impaired and the number of long-term care facility admissions is going to increase; thus the demands on the proposed system will be even greater.
ONHA supports the concept of the proposed bills, but we are concerned that the hoped-for achievements are too ambitious for the legislation. The package, devised with the best intentions, is attempting to do too much too quickly. As a result, expectations will swell far beyond reach and the outcome will be less than desirable.
Critical to the success of the package is the availability of supports before the provisions are enacted and small-scale testing of the concepts in operation.
We are worried that our residents will not receive safe and timely care following the enactment of these bills. Already our health care staff are paranoid about meeting legislative requirements. These bills will further complicate care delivery and take staff further away from the resident side. Staff are already concerned that they are going to be unable to meet these requirements. Some of their concerns are as follows.
The first involves the definition of "treatment." In Bill 109 treatment requiring consent is broadly defined, involving nursing care and, by implication, any other type of personal care. Essentially, you have everything from blood tests to analgesic rubs to surgical procedures, even nail-clipping. Essentially, all procedures and care services provided in nursing homes fall under the proposed definition.
Residents in nursing homes are no longer the medically stable people they were years ago. We now have residents who have multisystem problems. That means they have problems with their heart, they have diabetes, they have arthritis, they have respiratory problems, and unfortunately many have cognitive impairments on top of all of that. These kinds of problems require frequent observations and monitoring. We now have residents such as diabetic residents who are so unstable they have insulin dose changes every day and other changes to their medical and nursing regimes.
As you can see, the resident treatment plans can and do change often. Would these changes need to have substitute decision-makers' approval before they could be given? It is important to note that health status in an elderly compromised resident can change extremely quickly. Medical intervention must occur quickly to prevent a medical crisis. Further, the time and manpower necessary to obtain these consents would go beyond the capacity of nursing home personnel. A resident's access to timely quality care could be jeopardized because of the requirement.
ONHA recommends that consideration be given to a blanket consent for the plan of care and to redefine treatment in requiring the consent of a substitute decision-maker to those procedures that are invasive or that do not happen on a regular basis.
Our second concern is the need for clear guidelines on evaluating competency. All three bills depend on the determination of competency before the respective procedures can be carried out. What is missing from this package is a bill defining competency and a process for assessment, including who can do that assessment. It is imperative that this piece of legislation come first. Determining competency is critical to the success of the implementation of the other three bills.
A third concern is with the definition of "emergency." In Bill 109 the definition of emergency could be problematic for many elderly persons. A medical emergency to an older person may present quite differently than it does for you or me. An elderly person is similar in frailty to the premature baby or newborn in the need for quick intervention to avoid a crisis. For example, an infection in an older person must be treated immediately, as an older person, like a newborn, can become septic or have a full-body infection in a relatively quick period of time. Further, emergency care may become less timely and effective if health care workers are worried about potential liability. A definition of emergency needs to be developed that is not based on time, but rather the severity of the condition and the consequences of withholding care.
Bills 108 and 109 hold the professional liable for breaches of procedure. In fairness to them, there must be an educational program to help them understand their new role and the implications for their practice. As well, they must receive protection from disciplinary hearings when they uphold the requirements of the legislation.
Fran Bouchard will now review our concerns with facility admissions.
Ms Bouchard: Because the majority of residents entering long-term care facilities have some degree of cognitive impairment, the number of competency assessments, designations of powers of attorney and substitute decision-makers will also increase substantially. To facilitate safe, effective care upon admission, in reality we suggest that the following are a must: Competency legislation which defines competency and outlines an assessment process must be enacted before the bills are implemented; the need for substitute decision-makers should be made prior to long-term care admission; and a blanket consent for daily plan of care, as well as a pre-validated living will. Such a will would be drawn up when the individual was competent, detailing that person's wishes for personal and medical interventions in times of incompetency.
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Ms Wall-Armstrong: I am going to deal with the need to clarify the role of the health practitioner and where the advocate steps in. Health practitioners are committed to providing care, but the package of legislation can be expected to take time away from providing care to satisfy the required procedures. We question whether it is really appropriate for the health care provider to be responsible to fulfil many of the requirements of the bills, especially when the purpose of the legislation is to protect the individual from undesired care.
For example, finding the ideal substitute decision-maker in section 16 of Bill 109 is the responsibility of the health practitioner. We question the appropriateness of such a requirement. This legislation is going to require a health practitioner to start making decisions for people that to date have been made by judges trained in weighing evidence and seeking out information. Health practitioners have not been trained in their education to do that type of work, they generally have no interest in doing that type of work or time for it, and they will want to know who is going to compensate them for their efforts. Judges get paid for their work.
In nursing homes we already have a problem in getting medical doctors to take over care of residents in the homes because of the existing paperwork and forms. Some homes do not have an advisory physician because no one wants the paperwork hassle that goes with it. Without changes to the acts, that situation is going to get much worse. Our in-house staff are currently under pressure to find enough time to do hands-on work with residents as it is. Where will the time come from to do this unless the staff reduce their hands-on?
Without a quick test built into the act for who is a partner to an individual or how far does the staff go to find the patient's best representative, the problem of wasted valuable hands-on time is only going to get worse. We suggest that these responsibilities are better left to a trained advocate, who will not have to reinvent the wheel in trying to make these decisions.
I want to deal with the other part of where the advocate steps in, because based on the resident population and the number and types of consents required, all long-term facilities will require onsite advocates, at a cost far exceeding those being estimated. Without significant change, the dollar cost estimated for implementation is at very best described as naïve. To make the bills workable, whom advocates serve -- the individual or the advocate -- must be defined more clearly, as do the types of decisions related to consent and substitute guardianship. From a practical perspective, clear guidelines are required outlining whom, when and how to call an advocate.
The ONHA is recommending that a pilot program be implemented to test the proposed advocacy model. In this way the model can be evaluated and adjustments can be made before widespread implementation. Pilot projects are being used successfully in other areas, like land registry reform and court case management, to work out the kinks in those legislations, and you only have to look at fiascos created by the province-wide implementation of legislation like support and custody order enforcement and rent review in 1985, where initial cases took years to be dealt with, resulting in public frustration and disdain for the legislative procedure. I am told there are similar problems with the human rights legislation. These were doomed by a lack of preparation, funding and an awareness of the enormity of the work to be undertaken. The net result is that vulnerable people we want to help will be put at more risk. We all want to see legislation passed that will be functional, not dysfunctional.
That actually ends our oral presentation, except for your questions. I would like to point out that in our written presentation we have had circulated there are many more concerns. We have touched on about six of them. There are approximately 15 in our paper. Thank you.
Mr Chiarelli: Thank you very much for your well-thought-out brief. It has a number of themes we have heard from other presenters. We heard yesterday from Dr Kaufman, from the Toronto Hospital for Sick Children, that if this legislation were passed as is, he personally as a professional would ignore it. He had an associate, also a doctor from the same hospital, who said that if this legislation were passed as is, it would create chaos in the hospital setting.
We heard last week from Dan Ferguson, who is a lawyer experienced in the health care field, basically saying that this legislation would also create chaos. We had a physician here yesterday from the Carlington Community Health Centre in Ottawa who said she could foresee a lot of conflicts between her ethics and standards as a doctor and this particular legislation, and in circumstances of conflict she would certainly choose to ignore the legislation.
I am going to ask you to describe to members of the committee what you think, collectively or individually, would happen in your area of care if this legislation were passed as is and as contemplated -- because we have no idea what amendments may or may not be forthcoming -- with particular attention to what you described as narrowing the scope of the definition of treatment. But as it is now, what will happen in nursing homes across the province with this legislation in place?
Ms Bouchard: Being a front-line worker, I can tell you that it certainly would be a tremendous problem for us. The advisory physician we currently have would have a very difficult time with that. In our present situation we have 50 seniors who are all cognitively impaired, and also a population of 60 developmentally delayed adults, the majority of whom have no contact with their families, and 13 of whom have absolutely no next of kin.
We have had a situation in the past 18 months where one of these residents became terminally ill. Who was going to decide what kind of treatment was going to be provided for this person -- palliative care, possible surgery, pain management, all those things? It was a very tedious process. We had to appear twice before the ethics committee of our local hospital, and we had to involve the office of the public trustee. A lot of time was spent between September and December, and while someone was trying to make a decision, we still had to provide care for this person. So it really does put everyone at risk -- the resident, the physician, the office of the public trustee, myself -- I have a licence -- the owners of the nursing home, and above all, the resident.
Ms Wall-Armstrong: The other part of that is, in talking with our advisory physician -- and our difficulty with our particular advisory physician may be the fact that he is both a lawyer and a medical doctor -- he read the package of legislation and said, "I can't even do a physical on any of the people in this home until I have consent forms," and he is paranoid about touching anybody or doing any work.
We have enough problems right now just trying to get doctors to come in and deal with the patients in the home. We are afraid we will not be able to get anybody to come and take care of these people because they will be afraid of the liabilities involved with the legislation. He is at least able to read the legislation. Maybe he can read too much of it.
When I check with others in the medical community, any time you talk about additional paperwork or any kind of involvement in government legislation they back off. You only have to look at the increase in paperwork in Workers' Compensation Board forms and see how many doctors do not want to touch a WCB case. This legislation imposes even more problems or concerns for them. I just see it as a major problem.
Mr Chiarelli: I was particularly interested in your comments that you support the concept of this legislation. You would like to see legislation with these particular principles implemented. We have had a number of people come before the committee and say: "We've been waiting for a long time for this type of legislation. Let's get it in place and we can refine it later." In fact, yesterday we had one presenter suggest, "Implement this legislation and get a committee to review it three years down the road." Do you think the imperative to have this legislation in place outweighs the serious concerns, and some people have described the chaos, that might be created if it were in place as is?
Ms Wall-Armstrong: I personally think that if we have waited this long we can wait a little longer to implement something that is actually going to work. I am really concerned that we are going to make the situation worse and worse for many years before we can straighten it out. I would rather see some of the suggestions that we are looking at here about the definition of competency, about dealing with a model of it in our work, so that we have an opportunity to work those kinks out.
We do not want to have to continue in the circumstances we had with the one resident in our home already. It took months, and even with everybody trying to cooperate, the individual essentially went on for months without getting what I would consider immediate care. We want that to improve.
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My concern is, you pass this legislation right now, we could be a year, we could never get anything for two or three years for some people. So as much as you want to have it passed, if you are going to do that, at least do it on a limited scale as a pilot project so that the concerns people are looking at can be addressed. Then if everything is working fine, you can expand it. You will also have trained people in place to answer a lot of the questions, and you will deal with a lot of the frustration.
I think you are going to end up with legislation that has been passed but is going to get swamped by the demands and is going to end up, as I say, like it ended up in rent review, where people would file an application the first year and it took four or five years before they could even have their case heard. People cannot wait four or five years for this kind of help. They need to have some more immediate intervention, so if you are going to make it worse, do not pass the legislation. Leave us at least with what we have in place, it only takes us three or four months on it. But if you pass this and it takes us a year, our people are going to be worse off.
Ms Peppler: One thing you have to remember is, nursing homes do not have the luxury of ignoring legislation. We are heavily inspected, and that process is there to somewhat ensure that we follow legislation, so what is going to happen is, our staff will spend the time meeting these requirements, doing the paperwork and spending less time at the residents' bedsides.
Mr J. Wilson: Thank you very much for your presentation. I think you have made some excellent suggestions, and I am very supportive, as I think my Liberal colleagues are -- and we do not often agree on too many things -- of the pilot project idea. Your examples of legislation passed five, six years ago are right on; it should have been handled through pilot projects at that time. I think we are in agreement on that, despite the fact that it was their government that did it.
I will not get into that, because I do not want to be partisan, except to point out that the rush here -- and I will give a plug to Lyn McLeod, the Liberal leader, who yesterday, of course, got a brown envelope indicating that this is number eight on the hit parade for the NDP and there is a rush. It says right in it that there was a commitment made to the province's disabled community, and they are in a real rush to ensure that the commitment is fulfilled in terms of this legislation being enacted as soon as possible.
I have one specific question, though, on one of your recommendations. I am worried about the level of bureaucracy already envisioned in this legislation and about the paperwork, and you have given a very good example. I know from my own riding that there is a reluctance by physicians, the one example you gave, to go into nursing homes and serve nursing home clients.
You mentioned in one of your recommendations that the Advocacy Commission really should be monitored by a provincial board. What are your concerns or your fears there?
Ms Wall-Armstrong: I think it is the accountability of the Advocacy Commission, and to ensure that what they are dealing with is representing the individual's right and not their own personal beliefs as to what should be happening, and that there is some accountability to the public about what is going on.
Mr J. Wilson: It is really an unprecedented move by the government to set up an arm's-length commission that is already biased, that has a majority of its members who come from the vulnerable community. That sounds wonderful. It is almost Utopian that the commission should have this, but it does concern me, for instance, that in legislation we are actually setting up an arm's-length commission to carry out duties, and the commission itself is already biased. There is no balance there.
Ms Wall-Armstrong: That is what we are saying: that we are concerned that the bias of the individuals not end up going to the forefront as to how the advocacy is carried out.
Mr J. Wilson: Thank you.
Mr Wessenger: First of all I was wondering if you could refer to some of these studies with respect to the statistics on the level of cognitive impairment of persons in nursing homes. If you are prepared to provide some of these studies to the committee, I think that will be very interesting information to have.
Ms Peppler: The percentages I quoted are from a survey of 50 randomly selected nursing homes as well as a director of nursing consensus conference that took place last fall.
Mr Wessenger: And is there a report on that?
Ms Peppler: I have a copy I can leave with you.
Mr Wessenger: I think it would be appreciated, because it is certainly quite interesting information to have. It indicates the level of care that is going to be necessary in institutions such as yours.
You made some comments with respect to the question of treatment. Under the existing definition of "treatment" it is indicated that treatment includes a "course of treatment." Might I suggest to you that a "course of treatment" might cover the whole level of care that would be given to a person in one of your facilities, and it could be given in advance by a substitute decision-maker?
Ms Peppler: If that is truly how it is interpreted, it would be more workable.
Mr Wessenger: Yes, because I think it certainly is the intention not to require continual intervention with respect to the aspect of treatment.
The other thing I might point out is, at least in my perception of the legislation, that it applies basically to health practitioners, and a great deal of the care given to residents of your nursing home is given really by persons who are not health practitioners. Is that fair to say, too? So the day-to-day living services that are provided would not be included, probably, in the concept of treatment by a health practitioner.
Ms Peppler: Currently people called health care aides, who are non-professional staff, work under the supervision of registered nursing staff, RNs and RNAs. They provide a lot of the personal care, and certainly it is a problem that they are not included in the definition of health practitioner because they fall outside the Health Disciplines Act. That concern is raised in our brief. There are other workers as well who are not covered under that definition of health practitioner like social workers, ambulance attendants, our activity aides who provide a lot of care to our residents.
Mr Wessenger: Is it your position that you would like it clarified that those daily personal care services are not determined to be treatment? Is that the position you are putting forward?
Ms Peppler: Yes.
Mr Wessenger: The other aspect I would like to bring to your attention is that you say you would like some changes in the emergency provisions of, I think, section 22 of Bill 109. Do you have any specific recommendations in that regard? I think you perhaps referred to the 12-hour aspect, but anything in addition to that?
Ms Peppler: I will just quote from what I said. Basically, we feel that the hours are not that useful with an elderly person.
Mr Wessenger: You see the 12-hour --
Ms Peppler: The 12 hours, yes. We would like to see something that looked at the severity of the condition and the consequences of not giving care as more of the criteria base for "emergency."
Mr Wessenger: Would you also support something in relation to pain, to that aspect being considered under the definition of emergency?
Ms Peppler: Sure.
Mr Wessenger: One other suggestion I would just like to make to you: You say this legislation will make things worse. It appears to me, as I understand the law now with respect to consent, that under our existing law the only provision we have that consent can be given by a substitute decision-maker is either in a hospital setting under the Public Hospitals Act, or under the Mental Health Act, or by a committee appointed under the Mental Incompetency Act. So it would appear that right now there is no provision for substitute decision-making to be made with respect to many of the residents in your homes. Probably the only reason the system works is because of the ignorance of the existing law by people dealing with the residents. I would like to suggest that to you.
Ms Wall-Armstrong: There is no question that we feel there have to be changes made. Obviously right now, whether it is because of ignorance of the law from those people dealing with the residents or not, it is a procedure that people are familiar with and will continue to operate and function under. If you implement new legislation that they are made acutely aware of, you will cause a degree of confusion that will basically make the whole system dysfunctional for a period of time until they get the education, until they see how the process works. Our concern is that you could be looking at years before people get that education and before the system is reviewed to a functional basis that they can again work on it on a day-to-day care scenario.
That is what our concern is. There is no question that it needs change. As far as we are concerned there is too much that is not taken care of, but we really just do not want something hurried in that has not been looked at from a practical implementation standpoint to see how it is going to work to answer a lot of questions for people -- for example, the issue about what is a course of treatment. We have medical doctors who say, "a course of treatment deals with the medication that I've offered." It does not talk about constant care for that individual, and they interpret it differently.
Unless there is something specific or unless there has been a pilot project where those things have been clearly indicated as to what they are, you are going to have a lot of anxiety by the people who are forced to work under this legislation.
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Mr Wessenger: I think you made the point clear that a lot of education is needed there. You would agree with that?
Ms Wall-Armstrong: Yes.
Ms Carter: I have two main points. One is the question of who needs an advocate. When you talk of people who are severely cognitively impaired, I think they would not be in question because, by definition, an advocate is listening to the wishes of the person. So the people obviously have to have wishes that they can in some way express.
You mention on page 5 that people who have no family support for various reasons should be considered clearly vulnerable and would benefit from a formal advocacy system. Also, in the previous paragraph you do concede that sometimes family assistance is of no value to the residents. Do you not agree that families can definitely be a problem in a few cases?
Ms Bouchard: Occasionally they can be.
Ms Wall-Armstrong: I would say probably the majority of the time they are helpful, but we have seen definite case scenarios where family have been of neutral benefit and some have been definitely of difficulty for the residents, just having them around.
Ms Carter: So in some cases the residents need another person to be supportive to them and maybe give expression to their wishes as opposed to those of family or friends or other people who might be suggesting something different for them. So you would see that.
Ms Wall-Armstrong: Yes.
Ms Carter: Basically, I think we are looking at only quite a small number of advocates. The idea that they are going to be everywhere, interceding in every procedure, is not going to happen.
You also raised the thought that maybe there should be a pilot program. This has been suggested to us before, but as you know there already is a service in the Psychiatric Patient Advocate Office. I believe there is an advocate in each of the 10 psychiatric hospitals in the province, which seems to be working quite well. We have also had presentations from community groups which already provide advocacy on their own. They support what we are planning to do and in fact they are urging us to move ahead very quickly. We have heard the opinion expressed that this is an urgent matter, that there are people out there who desperately need this assistance and that we should not delay the legislation.
Ms Wall-Armstrong: I think if we had had the benefit of some pilot project in the nursing home setting, which is different from out in the community and where we feel that there is going to be a high demand, then we would probably not have a lot of our concerns because a lot of the questions we have and a lot of the confusion relating to this legislation would have been answered by that. We have not had the benefit of that in our setting, and what you are saying just reinforces the idea of at least a pilot project, at a bare minimum, in the nursing home setting or in the hospital because obviously, in other areas where they have had an opportunity to have it, they are more eager than we are to get into it, but they are dealing with it from their own setting. They have been able to answer their questions; we have not.
The Chair: Ms Peppler, Ms Wall-Armstrong and Ms Bouchard, on behalf of the committee I would like to thank you for taking the time out of your schedule and appearing today. Thank you.
Ms Wall-Armstrong: Thank you.
PHYSICIANS FOR LIFE
The Chair: I would like to call forward our next presenters, from Physicians for Life. Good morning. Just a reminder that you will have a half-hour for your presentation. The committee would appreciate it if you would limit your presentation to 15 minutes to allow time for questions and comments from each of the members. As soon as you are comfortable, please identify yourself for the record and then proceed.
Dr Scime: On behalf of my colleague and myself representing Physicians for Life, including those physicians who believe there is a moral basis to medicine, we would like to express our appreciation and thanks for this opportunity this morning.
My name is Dr Carmelo Scime and my colleague is Dr John Meenan. We are both family physicians. John practises in Kitchener-Waterloo, and I am from Hamilton. This morning we are here wearing many hats: a citizen of the province, a member of the medical fraternity, a parent, and a caring family physician. Between the two of us we have been in practice for over 50 years.
We are attempting to develop for you, the members of this all-party committee, a perspective of medicine which has a moral, therefore an ethical, basis or perspective. As family physicians, we come here as patient advocates. This could very well be the most important role for us physicians. Physicians exist only for their patients, which is a distinction, not like a union and its members. A union exists supposedly for its members, attempting to increase their wages, the conditions of work and the relationships. On the other hand, physicians exist to tend to the needs of patients -- sometimes curing, sometimes relieving, but always caring.
Speaking in general, these bills we are addressing this morning, Bills 7, 8, 74, 108, 109 and 110, can be seen to be directed towards that segment of the population that is approaching death or is dying. Nevertheless, death may be imminent, which is the phase of life in which death is in sight. Thus, we believe it is discriminatory. That is to say, we are focusing on a narrow aspect of life.
What we are saying is that each and every one of us in our needs or perceived needs acts as individuals and is different. But they are all treated equally. I will attempt to clarify this by reading for you the oath of Hippocrates, which is the basis of all medical oaths and all medical codes. These bills and the specific topics of death and near death that are attempting to be addressed are very popular in the medical and lay press today. We need only think of one case known to each of us, the Nancy B case in Quebec. Perhaps this particular legal presentation has catapulted this committee and the bills they are attempting to define.
As a citizen here in Ontario, I would like the members to address the issue: Do we need more laws, or do we need fewer laws? I think we can all do with fewer. Laws should not be proposed and passed as legislation unless they have clearly been presented to satisfy a particular need, not as an interference in the noble profession of medicine. Once legislation enshrines rights, they legally become difficult to change or amend. Eventually a law could be developed for its members in which an enshrined right gradually becomes obligatory.
From the preceding, what we are attempting to develop and define is this moral basis of medicine. Once we have put this across, we certainly will be able to dialogue with you, the members, who represent the concerns and aspirations of all the MPPs in the Ontario Legislature.
There is a bibliography at the end. It is for the use of your research assistants for any and all the references we make. They are easily available in a medical library or local reference library. It is our sincere hope that when it comes time for you to make your decision and vote, it will be on the basis of informed knowledge, as in informed consent.
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I would like to read to you the oath of Hippocrates, written between 480 and 370 BC:
"I swear by Apollo physician, by Aesculapius, by Health, by Panacea and by all the gods and goddesses, making them my witnesses, that I will carry out, according to my ability and judgement, this oath and this indenture.... I will use treatment to help the sick according to my ability and judgement, but never with a view to injury and wrongdoing. Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course. Similarly I will not give to a woman a pessary to cause abortion. But I will keep pure and holy both my life and my art.... Into whatsoever houses I enter, I will enter to help the sick, and I will abstain from all intentional wrongdoing and harm, especially from abusing the bodies of man or woman, bond or free. And whatsoever I shall see or hear in my intercourse with men, if it be what should not be published abroad, I will never divulge, holding such things to be holy secrets. Now if I carry out this oath and break it not, may I gain for ever reputation among all men for my life and my art; but if I transgress it and forswear myself, may the opposite befall me."
I would like to say that those who took this oath were called physicians, but being free men in Greek times, those who did not take the oath continued their trade as barber-surgeons or killers. Margaret Mead, an anthropologist, adds a profound observation that the Hippocratic oath marked one of the turning points in the history of man. She further states:
"For the first time in our tradition there was a complete separation between killing and curing. Throughout the primitive world the doctor and the sorcerer tended to be the same person. He with the power to kill had the power to cure...He who had the power to cure would necessarily also be able to kill. With the Greeks, the distinction was made clear. One profession, the followers of Asclepius, was to be dedicated completely to life under all circumstances, regardless of rank, age or intellect...the life of a slave, the life of the emperor, the life of a foreign man, the life of a defective child. This is a priceless possession which we cannot afford to tarnish, but society always is attempting to make the physician into a killer -- to kill the defective child at birth, to leave the sleeping pills beside the bed of a cancer patient." Dr Mead is convinced that "it is the duty of society to protect the physician from such requests."
My last quote is from Dr Christoph Hufeland, who lived from 1762 to 1836: "If the physician presumes to take into consideration in his work whether life has value or not, the consequences are boundless and the physician becomes the most dangerous man in the state."
I will call on my colleague Dr Meenan to continue this.
The Vice-Chair: Just to remind you that we would like to ask you questions. I have been looking at the brief and it seems to be pretty extensive. You have a part on the back that says "Presentation to Legislature." Would you like to refer to that or do you want to go through the whole brief?
Dr Meenan: If I may answer, Mr Chairman, I do not think it is the intention of my colleague to go through the whole brief. I think his presentation did take eight minutes. The points I want to make are contained in the brief and when we listened to the previous presenters, there were certain points in the legislation that we have considered. I think we see a lot of dangers and confusion in the legislation from the physician's point of view.
The Vice-Chair: By all means, then, go ahead.
Dr Meenan: Yes. As my colleague said, the problem we see is that we are dealing with the perspective of the terminal stages of life at which there is a lot of confusion and a lot of technological expertise brought to bear to prolong life. We see the power of attorney as a very powerful piece of legislation and perhaps a very necessary piece of legislation, and this is the will of the Legislature to make this a fact.
Once you study the brief, you will see that the power of attorney will inhibit the physician's ability to take care of the patient in the later stages of life. Realizing the great difficulties that physicians face in their bioethical approach to the later stages of life, I think that what we are trying to bring to bear in front of the committee and through our briefs is that we are attempting to clarify our position as physicians, as advocates for the patient.
I think this is why my colleague has accented the oath of Hippocrates, coming from a time when there was great confusion in the practice of healing, when many people deployed their healing in adverse ways at the behest of people who had unscrupulous purposes.
I think the fear is, under the power of attorney with the way the legislation is based, we could have a perspective where people who have ideas and principles which may inherently be good may be swayed by either emotion, by material purposes or may even be unscrupulous in their ways of approaching the rights of the people that they should be advocating.
One of the points I make in the brief is that a physician can interpret the patient's wishes in the terminal stages of life in a very empathetic way. Granted, the more years of expertise the physician has, the greater his or her expertise at interpreting patients' wishes and bringing them to bear in a focused manner so that they can understand completely, or as empathetically as they can, the wishes of the patient. I think this is the point we are trying to make, and I think I will terminate here and allow the committee to ask any questions it may have.
The Vice-Chair: Thank you very much. I did not mean to cut you short. I just saw that your brief was quite extensive and quite well-thought-out.
Mr Poirier: On the first page of your presentation you are talking about, and I quote out of the bottom paragraph on the very first page, "Broadly speaking, these bills" -- and you list all six of them -- "can be seen to be directed towards that segment of the population that is approaching death or is dying."
We have been dealing with this for two weeks, and it is definitely not only or even mainly considering those who are approaching death or dying. We are talking also about young people, those who may be very chronic long-term, with death not even close at hand. Why do you say that?
Dr Scime: This is our interpretation, certainly with chronic care patients in nursing homes, that kind of setting. Whether I see a patient in my office with ingrown toenails or chest pain or whatever it is, or an elderly person or I am making a house call to a nursing home or to the hospital, as I did this morning, I treat them equally. But it appears that this legislation deals with that part of life where they may be in a degenerative phase and needing care. I treat them equally, but different.
Mr Poirier: Did you want to say that you wanted particularly to address that segment of the population that is approaching death and dying? The bills do not necessarily concentrate on that group of people; maybe Bills 7 and 8 do, but I think Bill 74 and others do not necessarily. So I do not understand.
Dr Meenan: First let me say to the honourable member that we were trying to keep an adult perspective. I understand what you are saying, and having read the bills I see the whole point. As I pointed out, the legislation has great merit. The problem is that we see this focus as being of interest to us. This is the focus we see, where the dangers are that somebody who is approaching the terminal stages of life will have an advocate, which may confuse the issue, may confuse the treatment. This is where we see the danger, and this is the perspective we are trying to bring to the committee. We can take a broad look at the bill.
But Bills 108, 109 and 110 do contain the powers of attorney, and this is something that we see reflects back to Bills 7 and 8, which contain the death and dying. But I think that Bills 108, 109 and 110 are very powerful pieces of legislation within our interpretation as medical practitioners.
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Mr Poirier: Your brief is obviously a very lengthy brief and very technical, and we are used to trying to read diagonally rather rapidly. I do not recall, from the short time I have had to look at it and with the size of it, if you identified very specific points and very specific subsections in any of these bills that concern you, very specific, and if you made very specific recommendations if and where you wanted changes. Did you make that anywhere in here? You seemed to have talked just about broad principles and whatever.
Dr Meenan: The back part of the brief is my doing, and I concentrated on the power of attorney in general terms. I did not refer to any subsections because what I derived from the bill, and not being a legal expert I derived it as a medical expert, is that I see the power of attorney in broad terms throughout the bills as being very powerful, and it needs to be addressed in more sharply focused terms.
Mr Poirier: Okay, but I do not recall seeing anywhere, and correct me if I am wrong, where you made some very specific recommendations as to changing of wording and whatever. Did you do that?
Dr Scime: No, we did not do that.
Mr Poirier: Okay, because I had not seen it, and maybe I had missed it. Do you plan to do that? Do you plan to submit to this committee some recommendations?
Dr Scime: I think the thrust behind all these bills is another layer of advocate, or whatever name you want to give to it, that will come between patient and doctor. I think that if we at all times are treating the patient according to our oath, which I am sure you know has not been taken in the last 20 years or so in the medical schools of Ontario --
Mr Poirier: No, I did not know that.
Dr Scime: Yes, there is no medical school that asks its graduates to take this oath.
Mr Poirier: That stopped about 20 years ago?
Dr Scime: Approximately. I stand to be corrected; somewhere around there. So I think that we have lost that part. If we took the oath and followed the oath in regard to what patient we see, a young child or the elderly or those who are chronically ill, those of limited abilities, we would be treating them equally and therefore we would not need somebody else to speak on behalf of the patient because we are the patient's advocate.
Mr Poirier: Do you recognize that there may be some situations where patients who have no family or whatever may want or may need an advocate? Do you recognize that? Do you accept that? I do not know.
Dr Scime: I see your point, but whether the patient in front of us has a next of kin or not, we show dignity and we show respect for that individual, regardless, as written 2,500 years ago, whether you are free or a slave.
Mr Poirier: In other words, if it worked for you, you would not even think of passing Bill 74 whatsoever, right?
Dr Scime: Yes, I would agree with that.
Mr Poirier: I am trying to better understand where you are coming from and where you are going. It is important for you to tell us where you stand, what you do not like, what you think is going to hinder you as a medical practitioner. But it is also important, and this is what I am trying to find out from you, for you to identify specific points in the law and, if you want to help us help you, to make some specific recommendations as to what could make it better. It is one thing to know what you do not want, but it is also important to know what you want.
So if you want to do that, you are more than welcome to do it in more detail with your colleagues, and we will consider any amendments that you want to bring forward. I can appreciate the broad feeling you have for or against certain points, but for us as legislators it is important to know exactly what particular points in the law -- without you being lawyers, and we are not lawyers either -- trouble you more than others and make some constructive suggestions as to changing of wording or whatever.
But if you want to leave it broad in the sense that you are uncomfortable with the principle of advocacy, that is fair enough also. We will deal with that and consider your broad sense. That is the point I wanted to make. I am trying to make it more precise as to where you are coming from and going with this whole thing, because it is quite a heavy-duty presentation, and thank you for making it.
Mr J. Wilson: Thank you, doctors, for taking time out of your schedules to come and appear before the committee this morning. I do not like the line of questioning; it is almost as if you are being badgered. I think you have put together an extremely scholarly, well-referenced piece which gives us a wider perspective which I think is terribly lacking around here because we are so narrow and legalistic and focused and fighting various ideologies. I certainly appreciate it.
This might be a little extreme, but you do not put a great deal of faith in advance directives. You talk about how they properly should be used as a tool for discussion, not necessarily binding the physician. This is what I get from this. Am I on the right train of thought here?
Dr Meenan: I think the honourable member is partially correct, and he obviously has a good grasp of our brief. I think what we are trying to present here is the fluid situation of the medical condition as a determination of life. I think the problem is if we are somehow constrained by a legislative power which binds us to a course of decision which may inhibit the best interests of the patient and if that legislative power is not focused intensely so that there is protection that is fluid, because the situation changes moment by moment.
I know that one of the local law firms in Kitchener has asked for my input on living will legislation, which is an American concept and has been discussed within the province here. The living will can be a good thing and it can nail things down, but the problem is that advocacy or the power of attorney addressed to a patient can be so rigid and non-protective. It is hard for me to give specific situations, but we are talking for instance of a patient who has a massive coronary, who is on a respirator. What is the decision that that patient would have made previously? Would they have requested as much treatment as possible or would they have peacefully wished to go on their way to eternity? What we have to interpret for our patients is that will, that purpose, and we feel we are in the best position at this present time, and we do not see this legislation helping us.
To get back to what the other honourable member said, sure we can bring in hard-nosed points subsection by subsection, but the problem is it would have to be done so legalistically, and I agree with you that you do not want legal language. But the problem is, we are trying to give a general perspective where we ask the committee to consider the position of the physician as being truly a patient advocate at that time and within this specific perspective of the end of life.
Mr J. Wilson: Thank you. I appreciate that.
Mr Winninger: I should indicate at the outset that I think I fundamentally disagree with you on most of your points. I just want to put two brief questions to you. First of all, how many Physicians for Life are there in Ontario?
Dr Scime: In the hundreds, rather than thousands.
Mr Winninger: You do not know?
Dr Scime: I do not have that.
Mr Winninger: You do not know how many?
Dr Scime: No.
Mr Winninger: But is it less than a thousand?
Dr Scime: I would think so, yes.
Mr Winninger: Okay. Is it a formal organization?
Dr Scime: Yes. We are incorporated, and we have been incorporated for about 15 years.
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Mr Winninger: Dealing with a couple of your points that concern me, you suggest that our legislation is more directed towards death and the dying than towards life. This comes as quite a surprise to me because I had thought that the whole role of advocacy, powers of attorney for personal care, consent to treatment and guardianship were directed towards preserving and enhancing life through appropriate interventions rather than towards death and dying. That is one thing I certainly disagree with you on. It may be a difference in our fundamental approaches. I would suggest to you that I would not be actively promoting this legislation if it were exclusively designed to promote death and dying.
However, I think you would acknowledge that there are cases where individuals, vulnerable or otherwise, for personal reasons of their own, may decide to have what we call a living will and that their individual wishes should be respected. Would you agree with that?
Dr Scime: Yes. For instance, in a living will you would put down that you want A, B and C. I have been practising since 1958 and I know that things have changed. Things we are doing today we were not considering in 1958.
Mr Winninger: You know, though, that there is a clause that allows an individual to opt for a more modern form of treatment through technological advances?
Dr Scime: Yes. It has to be updated because maybe there is something else along the trail, whether it is antibiotics --
Mr Winninger: Our legislation does not prevent that.
Dr Scime: No, but if we begin with the fundamental differences, if we treat that patient equally, then we would not have to put down A, B and C.
Mr Winninger: Okay. I know time is short and I have one other important point I want to discuss with you. Quite frankly, I have a fundamental objection to a physician who says he or she also fulfils the role of advocate. I have some difficulty with the conflict that I perceive between the person who is, with the best intentions, treating an individual and also advocating for that individual at the same time. I wonder, and I put it to you quite directly, whether you think a patient has the right to consent to or refuse the treatment.
Dr Scime: He or she does. But we are supposed to be professional and independent and objective and therefore we can assess the situation without becoming emotional, like being a relative or next of kin.
Mr Winninger: But if the next of kin or the relative or the guardian or other substitute decision-maker is making a decision that is authentic in that it expresses or reflects to the greatest extent possible the wishes of that vulnerable person, why would any physician want to interfere with that and chart a different course?
Dr Scime: We would not take it. I agree with everything you said. We would be arriving at the same conclusion.
Mr Winninger: That is not what I understood. You said you see the power of attorney as interfering with the treatment capability of the physician.
Dr Scime: It would be another layer. I am saying that if there was not that position we would be arriving at the same conclusion, because we would be dialoguing and talking with the family or whoever else might be represented. For those who do not have a next of kin -- in the previous presentation I think they said there are about 20% who do not have any person designated; it is usually the home or the public trustee -- we would be arriving at that conclusion.
Mr Winninger: Our legislation does not preclude anything of what you say. In fact a family member would be a preferred guardian in the majority of cases. That dialogue could continue and that family member would have formal guardianship to make the kinds of decisions you would probably deem necessary.
Dr Meenan: With the Chair's indulgence, one point: The phrase you use is "interfere with treatment." I would rather say "inhibit treatment" and I think I implied that. Okay?
The other point is that with a power of attorney, at the moment bilateral discussion goes on all the time and we take into consideration very seriously what the family says. It is binding on us on an ethical basis. But the problem with a power of attorney is that it is a constraint on that person. Unless it is interpreted very, very minutely and adequately it inhibits treatment all along and can prolong treatment unnecessarily at tremendous emotional cost to the patient, and to the family if the patient is comatose. Rather than "interfere," I would rather use the word "inhibit."
Ms Carter: My points are very similar to what Mr Winninger has raised: first of all, that not all vulnerable patients are close to dying; and second, although I am sure doctors do try and in most cases succeed in being professional, independent and objective, nevertheless there sometimes are decisions to be made. There are different directions to go in. The decision is sometimes very properly to be made primarily by the patient or those speaking for the patient -- for example, where you have to choose between taking medication which might have drastic side-effects and not taking it. We have listened to a lot of representations from schizophrenics and relatives of schizophrenics and we have had two very different views on that question. Individuals have a right to be heard on that.
Then there are cases, for example persons who might be Jehovah's Witnesses and not want blood transfusions, where their own best interests from your point of view and what they actually want are in direct conflict. Do you have the right to override that decision on their part? I think it is much less of a clear-cut case. You see it from your point of view. I am sure you always try to do the best, but I think in the real world we cannot say for a doctor to be their own advocate is good enough and just leave it at that. Sometimes it does need decisions to be made with input from other directions.
Mr Malkowski: I thank both presenters today for providing that comprehensive perspective. One medical professional from the west was talking to me about the situation where the doctors in the west were on strike, and statistics had shown there was actually a decrease in the rate of death. Another situation is that some medical professionals at times certainly do have the power to decide life-and-death situations and where things are going to stand in those situations. Do you agree that it is important to provide the patient with information on some of the possible risks involved in treatment? There are times where the treatment actually can have detrimental effects. Do you not feel that patients need to have all that information provided to them?
Dr Meenan: If I may answer that, with respect to the honourable member, I think he is talking about the Israeli doctors' strike in 1959. I do not know about the strike out west, but there was a definite reduction in the number of deaths during that strike, which was no surprise because probably nobody had been operated on; nobody had been treated. There probably were no iatrogenic deaths. The point you make is very good.
As I said, there must always be bilateral discussion. Patients must know exactly what the treatment is and what is happening. Only the patients can be totally empathetic to their own cause and only -- with due deference to the committee -- a professional can in some way empathize far more than, unfortunately, the family members. Family members give input and try to see the patient's wishes, but so often over our experience we have seen family members being confused, being hot and being put in corners by other family members. They need some kind of overall position that advises them as to the best course of treatment for the relatives who are incapable of understanding, who are comatose or who are at the end of life. They need this interpretation.
Mr Malkowski: But in some situations there are patients who do not have family and relatives. They may need a neutral person to also explain information to them. Do you not agree that that situation can happen?
Dr Scime: That is quite correct. What we are trying to impress on you is that if we followed our oath -- we are professionals; we are independent; we only exist for the patient -- certainly we would be giving the patient all the information that is possible, the pros and cons we arrive at, so that the patient and the physician arrive at the proper course of action. I hope that helps you.
The Chair: Dr Meenan and Dr Scime, on behalf of this committee I would like to thank you for taking the time out of your busy schedules and coming to give us this presentation.
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UNIVERSITY OF OTTAWA
The Chair: I would like to call forward our next presenter, Professor Cynthia Petersen. Good morning. You will be given a half-hour for your presentation. The committee would appreciate if you would limit your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Ms Petersen: My name is Cynthia Petersen. I am a professor of law in the common law faculty at the University of Ottawa. I specialize in the area of lesbian and gay rights. I teach a course on lesbian and gay legal issues. I have published in the area and I also do a lot of consultation in cases involving lesbian and gay litigants. I am also a lesbian, so I personally have an interest in seeing that the law treats lesbians and gay men equally.
My remarks will be fairly brief. They are specifically to address the definitions of the words "spouse" and "partners" in Bills 108 and 109, the Substitute Decisions Act and the Consent to Treatment Act. Both these bills have an identical definition of the word "spouse" and of the word "partners" in them, so I will just treat the two together.
Both bills indicate that in some circumstances the spouse or partner of an incapable person may be authorized to make decisions on his or her behalf. The concern I have is with the content of the definitions. I have indicated on page 2 of my brief the current proposed definitions. You will see that the word "spouse" is limited exclusively to individuals of the opposite sex. They may be married to each other, they may live together for one year, have parented a child together or have entered into a cohabitation agreement under section 53 of the Family Law Act.
Partners, on the other hand, do not necessarily have to be individuals of the opposite sex. The definition that is currently given in the bills is, "Two persons are partners for the purpose of this act if they have lived together for at least one year and have a close personal relationship that others recognize is of primary importance in both persons' lives."
The way that I read the legislation, the definition of "partners" is an attempt to expand the scope beyond the traditional heterosexual nuclear family model so that individuals who do not structure their families in that way may nevertheless be recognized as partners, and individuals may have an opportunity to be authorized to consent to treatment or to consent to make certain decisions on behalf of their partner who may be incapable according to the law.
My first concern is that the definition of "spouse," as you can see, is much broader than the definition of "partners," in the sense that individuals of the opposite sex can be recognized as spouses under four different categories, whereas individuals who are of the same sex would only be recognized if they met the definition of "partners," which is much more narrow. For example, two heterosexual people, a man and a woman who had not lived together for a year but who co-parented a child or who had a cohabitation agreement together, would be recognized as spouses, whereas a lesbian or gay couple in the same circumstances could not be recognized as spouses because there is a mandatory one-year cohabitation requirement.
Furthermore, all the other categories are excluded. Marriage is obviously excluded because it is not possible under the law, but a lesbian couple could enter into a cohabitation agreement. It would not be recognized by section 53 of the Family Law Act, but the fact that the act discriminates against lesbian and gay couples I do not think is any reason to justify the perpetuation of that discrimination. Certainly lesbian or gay couples can co-parent children just as easily as heterosexual couples can, so there does not seem to be any reason why we should differentiate in that regard.
The other concern I have is specifically about the cohabitation requirement. Even if it were imposed on heterosexual couples so that it were mandatory -- which it currently is not, the way the bills have been drafted -- a heterosexual couple does not need to live together for a year if for example they have a cohabitation agreement. But in my opinion, even if it were imposed as a mandatory requirement it would still discriminate against lesbians and gay men, because they are differently situated in our society. Oftentimes cohabitation is simply not a viable option for a lesbian couple or for a gay male couple.
First of all -- I think this is well known -- there is widespread discrimination, oftentimes harassment, and sometimes outward violence against lesbians and gay men, who as a result sometimes choose to conceal their sexual orientation from certain segments of this society. Living together as a couple oftentimes creates a greater risk that your sexual identify or sexual orientation will be discovered by the public. So if as a lesbian person a woman chooses not to live with her lover so that, for example, her family will not guess that she is involved in a lesbian relationship or so that her friends or colleagues at work, other tenants in the building, whatever -- if she chooses to conceal that from them, one of the things she may do to conceal her sexual orientation is choose not to live with her lover.
In Ontario we do have some human rights protections against, for example, being evicted from your apartment because you are lesbian or because you are gay, but the Human Rights Code does not protect against harassment based on sexual orientation, so we do not have full protections in the province. It may be very legitimate for lesbian women or gay men to choose not to live with their lovers in order to increase their ability to conceal their relationship, and hence their sexual orientation, from various people in their lives.
The other concern I have, which perhaps is more critical, is that currently the judiciary in Canada often imposes a non-cohabitation requirement upon lesbian mothers or gay male fathers who have custody of their children. When a heterosexual relationship breaks up and the parents are involved in a custody dispute, usually the lesbian mother or gay male father is at a disadvantage. I am speaking now of someone who was involved in a heterosexual relationship and comes out as a lesbian woman or as a gay man.
The judges in Canada have said consistently that homosexuality or lesbianism is not a bar to custody, and for the most part they have not prevented individuals who are gay or lesbian from having custody of the children merely because they are lesbian or gay. But it is very common and regularly imposed that they cannot live with a same-sex lover if they are going to maintain custody of their children. So this legislation would essentially force lesbian mothers or gay male fathers who have such a conditional custody order with respect to their children to choose between maintaining custody of their children and being recognized as partners with their lovers. This, I think, is probably not something that was deliberately inserted into the law. It was perhaps just an oversight, but I do want to bring that to your attention.
The last thing I wanted to bring to your attention is the fact that the current federal law does not permit lesbians and gay men to sponsor their partners into this country for the purposes of immigration, and so an individual Canadian lesbian or gay man whose partner is in a foreign country faces considerable obstacles in getting that person to come and stay permanently in Canada. So, again, to impose a cohabitation requirement upon them does not seem to be fair.
All of these obstacles are something that heterosexual people do not face, so it simply does not mean that you are treating people equally if you impose the same condition on both, because lesbians and gay men are situated differently.
The final remark I wanted to make is with respect to the requirement under the definition of "partners" that the relationship between these two individuals be one "that others recognize is of primary importance" in both of their lives. I do not understand the imposition here that there needs to be some form of societal validation or even just societal recognition of the relationship. A lesbian or gay male couple may choose to conceal their relationship for a variety of reasons until they are actually confronted with a situation where one of them has become incapable. At that point they may be willing to come forward and come out with the relationship, but they should not be required prior to that point to necessarily disclose their relationship. That is what this legislation does. It also implies that there has to be some form of acceptance from others that they are of primary importance to each other's lives, and it simply is not fair in our society, where lesbian and gay relationships are not respected for the most part. There is a lot of hostility and lack of recognition, lack of respect.
The alternative appears on page 7 and 8 of my brief. First of all, I suggest that you eliminate the distinction between spouses and partners. I think it marginalizes partners, and I do not understand the necessity of it. Furthermore, I think it risks creating a conflict when you have an incapable person who has a partner under the definition presented here and at the same time may remain legally married to someone else from whom they have been separated for some period of time. Then you will be forced to make a decision about who gets priority between the spouse and partner.
I think it would be easier if you simply eliminate the distinction, completely repeal the definition that is presently put forward for the word "spouse" and substitute for the current definition of "partners" the one I have on page 8 of my brief, which I will read to you: "Any two persons are partners for the purpose of this act if they have a close personal relationship which is of primary importance in their lives. Factors which may be considered as indicia of partnership are: shared accommodation, sexual relations, a coparenting arrangement, a cohabitation agreement, shared activities, shared finances, self-identification as partners or a marriage contract. This list is not exhaustive and any absence of any of the enumerated indicia shall not preclude recognition of partnership."
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I began the definition with the word "any" to indicate that it would include both opposite-sex and same-sex individuals. I do not require that the cohabitation agreement be recognized by section 53 of the Family Law Act, because that would further discriminate against lesbians and gay men. I do not demand that any of the particular indicia be necessary for partnership to be recognized; just that it be taken into consideration when a decision is to be made as to who constitutes a partner or a spouse of an incapable person -- in these circumstances a partner. That is the essence of all of my remarks.
Mr Poirier: I could not agree more with you. I do not understand why there is a distinction, English being my second language. Why the hell does the law make it that a spouse becomes automatically heterosexual?
Mme Petersen : Vous pouvez m'adresser en français, si vous voulez.
M. Poirier : Pas de problème, mais on n'a pas de système d'interprétariat ; donc nous on va se comprendre, mais il y a peut-être d'autres personnes qui ne nous comprendront pas.
So until we get our pacemakers here on a regular basis so we can talk English or French as our choice, we will just do it in English for right now.
I do not understand why the law says that a spouse is then enshrined as something heterosexual, and partner, homosexual. I do not understand that. With all due respect to what the law said in the past, that in 1992 you make this distinction I do not understand.
Second, I do not understand people from a party that has always been on the rooftops telling us that they respect people who are heterosexual, homosexual or whatever, that lesbians and gays and whatever have big support among this party, that they would come forward with this type of bill to make this distinction. To me a spouse can be same sex, opposite sex; I respect that. Same with a partner. I have had a partner before, and I am not homosexual. That is the way I see the definition of the word "partner" or "spouse." You are saying with this definition on page 8 that people are partners -- or spouses, I guess -- whether this could be considered for same-sex or opposite-sex relationships, right?
Ms Petersen: Yes.
Mr Poirier: Okay. So why would you not say "partners or spouses"? Who gives a damn what the definition is?
Ms Petersen: Right. Well, I would be open to that. The main thrust of my presentation is that I do not think there should be a firm distinction between spouses and partners, and certainly that the criterion should not be different for spouses and partners, but if you want to call it spouses instead of partners, I am not opposed to it.
Mr Poirier: Or something that would say that you can call it a spouse or you can call it a partner.
Ms Petersen: If anything, I was anticipating that some individuals may take offence to calling lesbian and gay couples "spouses" as some heterosexual individuals do, and so I was suggesting partners --
Mr Poirier: Too bad.
Ms Petersen: -- as an alternative.
Mr Poirier: That is their problem, not yours and mine, right?
The other thing is: For others to recognize it as a relationship, who the heck is going to define "others"? Are you going to have a list as to who qualifies to be the other to recognize that relationship? It does not make sense either. So if you are the party of the people that claims to have a more sensitive nature as to the respect of -- which is not true; which I do not believe -- then you should come forward and rewrite this and eliminate this kind of crap. Pardon the expression.
Mr Chiarelli: Thank you for bringing these things to our attention. Quite frankly, the distinction did not come to mind when I read the legislation. The substance of the act as written, I think, shows the intention, as you have agreed, but I think that as legislators we have to be prepared to look at new ways of defining and taking into account social and practical realities that are out there.
My question to you is, is the present definition section assailable or can it be attacked, as you understand any human rights codes or laws applicable to the province of Ontario?
Ms Petersen: It depends on the interpretation you give. Currently the Ontario Human Rights Code does prohibit certain forms of discrimination based on sexual orientation, but the definition of the word "spouse" within the Ontario human rights act remains exclusively heterosexual. It has been judicially interpreted as not being available as a recourse for lesbian and gay couples. The human rights act is not available as a recourse. If you are a lesbian who is, for example, fired from your employment because you are lesbian, yes, there is recourse, but if it is a matter of a spousal benefit that you are seeking, generally the law has not been available.
I do not think that is a reason, however, not to change the law. If anything, it means we also need to change the Ontario Human Rights Code so that it provides greater protection for lesbians and gay men. But I would say in my professional legal opinion, no, I do not think you could actually attack it based on the Ontario Human Rights Code.
Mr Chiarelli: I think, looking at the rationality of your argument and looking at the legal technicalities of your argument, you are 100% correct, but I am sure you understand that there is also a political reality. The challenge is, is the government prepared to accept the rational, legal recommendations that you are giving in light of some of the political realities and special interest groups and so on and so forth? It is going to be interesting to see how we respond to your suggestion. I want to compliment you on your presentation, because technically, legally and rationally it makes more sense than what is in the bill at the present time.
Ms Petersen: I think you also have to remember that part of the political reality is that there is also a large lesbian and gay lobby in the province.
Mr Winninger: I think I can accept most of what you say. I know I can also say that the government is actively reviewing the wording of this definition, to come up with a better definition.
I do have a couple of questions arising out of your submissions, though. One is just to satisfy my own curiosity. If you are weighing these various indices -- and I take it it would be a judge who would weigh these indices --
Ms Petersen: Presumably if there was some sort of dispute it might end up before a judge, but hopefully you would not reach the stage where there would be a dispute. Somebody would clearly be recognized as a person's partner or spouse, whatever term you want.
Mr Winninger: You may have been reading my mind, because I could see how several different people could come forward with various permutations or combinations of these indices you have described and all ask to be made the guardian or to be enabled to consent to treatment. Is that a scenario?
Ms Petersen: I think that is possible. I do not think that is something that would occur regularly, but it is certainly something that in a given situation could be possible. But it is also something that currently exists under the law and already happens, so it would not be creating some sort of difficulty that does not already exist.
Mr Winninger: Except that you are making the clause a little more general than presently exists.
Ms Petersen: With respect to heterosexual individuals, yes, but with respect to lesbian and gay individuals, I do not think it really makes it all that more general, because the current definition of "partners" is already in some respects quite vague except for the one-year cohabitation requirement.
Mr Winninger: I see.
Ms Petersen: But certainly with respect to heterosexual individuals, I think yes, it does make it a little bit more general in the sense that there were four clear categories before and if you met one of them you would automatically be considered. But then again you could also be married to one individual and coparent another and have two spouses under the current definition.
Mr Winninger: Right.
Ms Petersen: I do not think it creates more difficulties than already exist, although I will not deny that the possibility is there that two people may present themselves.
Mr Winninger: There was something else I wanted to put to you. In terms of the present wording of subsection 1(2) of the proposed definition, you would agree with me that the reference to partners does not connote or refer to sexuality.
Ms Petersen: Not particularly.
Mr Winninger: It is sexual orientation-neutral.
Ms Petersen: Yes, I agree; it could include two heterosexual individuals. It does not specify necessarily that it is a lesbian or gay couple that would constitute partners.
Mr Winninger: Okay. Last, I do not think you need to be reminded that it was our party when in opposition that advocated the amendments to change the Human Rights Code to prevent discrimination in services and accommodation for lesbians and same-sex partners.
Ms Petersen: In fact I am in favour of the spirit of the law. I see this as a movement towards recognition of lesbian and gay couples as well as other individuals who do not live in traditional family structures. I just think it is flawed. But I do see it as a movement in the right direction, because the law could have been written without the definition of partners, in which case it would have been exclusively heterosexual. I think this is a step in the right direction, but I do think that it is flawed.
Mr Winninger: Thank you.
Mr Chiarelli: The present definition, when you are looking at heterosexual relationships, could also be discriminatory, could it not? In other words, there are presumably multiple relationships or conflicting relationships, triangles or what have you, whereby the definition of spouse could in fact create an injustice on the relationship. Who is the person of primary importance to an individual? A person of primary importance in effect is not necessarily the one who fits the definition in subsection 1(1).
Ms Petersen: Yes.
Mr Chiarelli: Mind you, there will be a minority of circumstances, but can you see circumstances where in fact a spouse ought not to be the person of primary importance?
Ms Petersen: Certainly. If it is a person to whom you are legally married but from whom you have been separated for a number of years or there is some sort of distance between the individuals, the mere fact that there remains a marriage bond that has not been dissolved I do not think should be privileged to the extent that it would be with this current definition, which is why in my proposed definition a marriage contract is only indicia of partnership.
Mr Chiarelli: It could be more unfair to the heterosexual situation as well. You may have people who are cohabiting together, legally married for whatever reasons, and there is a more meaningful relationship with somebody outside that house in a heterosexual context.
Ms Petersen: Yes, I suppose it is possible, because people live in all different circumstances, so certainly it is possible.
Mr Chiarelli: I know of some, particularly, where that would be applicable. So therefore the definition as it presently exists in subsection l(1) could create an inequality or an injustice.
Ms Petersen: Yes. I would agree with that.
The Chair: While I do not usually get involved in these things -- and I will not make a comment -- I have one question. Somebody who is hiding his or her sexual orientation -- if something happens and the family shows up and they know of no other significant other, what would happen in that case?
Ms Petersen: Then the person would be forced to disclose the relationship, and it is usually what happens in these types of contexts where --
The Chair: But what rights would they have? Where would there be any clear indication that they are the person, the significant other?
Ms Petersen: Are you talking about under my proposed definition? The law as I would like to see it?
The Chair: No. Just what your solution would be in that case. Would a living will be your only alternative?
Ms Petersen: No. I do not think it would necessarily be the only alternative, although those sorts of documents can sometimes be very helpful. If the family was not aware of the relationship because it has been concealed from the family and now suddenly this person presents himself or herself -- they may have been presenting themselves as partners to other circles of friends. For example, the family may not have known about the relationship. There are other people who can come forward and say, "We know they've been having this relationship for a number of years." They may have been sharing their finances and not telling their parents, siblings or whomever about it.
Yes, the family has been left in the dark, but nevertheless they have met a number of the other indicia who could then come forward and indicate partnership. So I think that most lesbians and gay men who conceal their relationships do not conceal it to the point where there is no one in their lives who knows about the relationship, although they may choose to keep it from their families or one of their two families. They usually tend to conduct their lives very much like any other couple and share activities together or perhaps share accommodations or maybe not. I think that in all likelihood they would still meet most of the indicia. If they did not, then you would have to resort to that sort of document.
The Chair: Thank you for that clarification.
Professor Petersen, on behalf of the committee I would like to thank you for taking the time out today and giving us your presentation.
Ms Petersen: Thank you.
The Chair: This committee stands recessed until 1:30 this afternoon.
The committee recessed at 1205.
AFTERNOON SITTING
The committee resumed at 1343.
JUDITH SNOW
The Chair: I call our first presenter, Judith Snow. Good afternoon. Please identify yourself for the record and then proceed.
Ms Snow: My name is Judith Snow. I am with the Centre for Integrated Education and Community, but that is not who I am really representing today. I am representing a group of about 150 families, each of which has a child or a member of the family who does not speak. We do not have a formal name as yet in Ontario, although the group has existed for about 15 years and operates on a very informal basis.
This group invented the idea of building support circles around people as a means of supporting their participation in society without necessarily having to be dependent on services and formal associations.
The group came into being because the families that have these children were finding that the formalized services were isolating and segregating their members rather than facilitating participation of those people. I am talking about people who would be labelled in the system as severely and profoundly disabled, people the new advocacy legislation would say were incompetent and would require being labelled as incompetent in order to receive advocacy services.
By the way, two things that are quite noteworthy in Ontario grew out of this group. One is the Citizen Advocacy movement in Ontario and the other is the Extend-A-Family movement. Extend-A-Family is a formal organization that finds friends and families to be partners with the families that have a person who does not speak as a member. As a model it was developed in Toronto, but it has become a worldwide model for supporting people who are considered to be severely disabled or developmentally disabled in some way.
This group met about six months ago now -- how time flies -- addressed the issue of the advocacy legislation and was quite concerned about the impact this legislation might have. A small group of us decided that one of us would make a presentation, and here I am. I also wrote a paper, which I presume you have in your package somewhere. It is called Empowerment Through Advocacy.
Very simply -- I hope very simply -- what I would like to say is that we really are in the grips of two paradigms, two ways of thinking about what a person with a disability is in society and what is the best way to approach providing the kind of support and protection we all want to provide. Our concern is that all the legislation that lies before you comes from the wrong paradigm and consequently, even though we might tinker with it endlessly, we are not likely to get something that would really work for a person who does not speak. I would like to lay out those two paradigms very briefly.
To be perfectly honest with you, if I had my way we would just drop all this stuff and start again from a different point of view and really look at what it is that could really serve somebody who requires protection. I doubt very much that this is going to happen, but I think it is important for us to realize that further labelling somebody is not likely to end up with actually supporting him in any particular way. Let me explain how that is.
The one paradigm I call the "disabled" paradigm. It is the idea that whenever we see somebody who clearly has a limitation, who cannot walk, talk, figure out how to put his pants on right the first time, who has some kind of limitation, when any citizen sees or encounters that person, the first reaction is a very compassionate one, generally speaking. They recognize that the person is going to be unable to make use of society, as society is, and is going to experience real limitation. As a society, as citizens we say: "We'd like to do anything we can to help you overcome that limitation so that you'll have the same opportunities and options as other people. When you've overcome your limitation, we'll welcome you into the bosom of society as a `normal' citizen."
Out of that has grown an incredibly wide range of opportunities for people. What we have in fact is a community within a community, so that if you are a person who is labelled disabled, you can literally access another form of transportation, another place to live, another place to spend your day or to work, another set of recreations, a completely different set of opportunities from what the ordinary citizen encounters, built one within the other, a community within a community. I am talking in very black and white terms, but I am just laying out the basic idea. What is supposed to be possible is that when you have gotten what you can get out of the special system, then you will have access to the ordinary system.
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That would be great, except for one thing: It does not work. Nothing in the special system ever actually helps somebody overcome his limitations. That is not to say that it does not change that person, quite dramatically sometimes, but a person who does not speak -- I mean 99% of the time or more -- is still a person who does not speak after 15 years of special education, or a person who does not walk is a person who does not walk after eight or 10 years of rehabilitation. After five years in the chronic care system an elderly person is still an elderly person; in fact, they are five years more elderly.
The system does not work. We have put so much time and energy into it that we as a society find it very difficult to recognize that it does not work. But its aims and its objectives are still quite valid; that is, that what we want to do is help people overcome limitation so that they can be participators in the ordinary world.
The other paradigm we call the "gifted" paradigm. It says that everybody is already participating and making a contribution to society. The issue is not overcoming a limitation of the person, but overcoming a limitation in the supports and the relationships around the person so that, first, people see that the person is contributing and, second, his contribution is enhanced and offered more fully to society than it is right now.
For example, in our larger institutions, of which we still have a few in Ontario, everybody who is in the institution spends some part of his day doing something like being part of the messenger service, the cleaning staff, the foodservice system, the laundry system, doing some of the landscaping or something like that. For example, at Huronia Regional School -- whatever they call it these days -- all of the residents participate in one of those five activities each and every day. While they are there they get paid $60 a month, they get told that they are severely and profoundly disabled and that we think they are a burden to society. If they happen to be living in their home community, surrounded by family and friends, they could be doing exactly the same job, literally exactly the same job, being paid $12 to $15 an hour or more for it, and people would see that they are actually making a contribution to society. The possibility would be there for that contribution to be enhanced. For example, they might go from part-time to full-time work. In any case, something could happen that would enhance their participation.
As another example, we say that children who do not speak and apparently do not do anything are severely and profoundly disabled. Yet in three or four school boards in the States that have actually integrated such children into their regular classrooms the rate of violence in the high schools has dropped dramatically. We do not yet know what the direct connection is between putting a child who does not speak into a classroom and the dropping of the rate of drug use, but clearly there is a relationship, and we need to find out what that relationship is. But it looks like the high school kids take such an interest in the activities and participate in supporting this child in the classroom that they no longer feel their lives are worthless and that the best thing to do is either to take drugs or kill somebody in the school yard.
Those of us who are interested in supporting people who do not speak say that labelling somebody as incompetent in order to protect him is just going further down the road towards pushing this person into a very segregated situation and causing him to be seen as a non-participant in society. We value the fact that people want to make an effort to protect people in our society, but we feel it would be much more productive to put something in place that would allow us to support relationships around people. Something like the Citizen Advocacy and the Extend-A-Family models need to be enhanced in our society and made more available to people than they are now.
The fact is that if somebody is part of a powerful relationship network of people who respect him and know what his contribution is, then good decisions will be made for and about him in that circle of people. What is missing for a lot of people is that their relationships have been stripped out of their lives, for one reason or another. Very often it is because of the actual services they have encountered.
For example, if you get to become a quadriplegic in our society, you are put in the hospital for at least two years. During that period of time your family, your friends and the people you go to school with and the people you work with tend to drift away from you because you are not participating actively in the same activities that you were before you became a quadriplegic. But other rehabilitation models get people back up in wheelchairs, give them an environmental control, and send them back to school within two or three days, still stabilizing them medically but doing it in an outside model rather than an in-hospital model. When something like that goes on, people keep their friends and keep their relationships, keep their important activities and maintain their role in life.
We are saying that where the energy needs to be put is around maintaining and enhancing the relationship networks that are around people who do not speak, rather than having them labelled incompetent.
Mr J. Wilson: I am sorry I was not here for the first part of your comments, although I am very interested in what I have heard. How does the role of an advocate fit into your thoughts, then?
Ms Snow: The primary role of advocacy around somebody who is stripped of relationships would be two things. One would be to prevent somebody from being moved out of their relationship network, if at all possible, and then if somebody was already isolated, say in a nursing home or an institution or whatever, then the role of the advocate would be to start rebuilding relationships around people, much as Citizen Advocacy does now.
Ms Carter: I have a great deal of sympathy for your point of view. I am just wondering how as a government we could legislate to help bring about the kind of situation that you are describing. What could we do?
Ms Snow: I do not think there is a quick answer. I think we need to seriously rethink the model that the advocacy legislation is built upon. Second, funding supports like Extend-A-Family and Citizen Advocacy need to be considered as a genuine part of what is happening, because traditionally funding for the relationship supports is the hardest sort of funding to get.
Mr Malkowski: As always, your presentation was very interesting. Just in relation to advocacy, you had said that in fact it is something that is necessary for the community to develop strategies for, for example regarding the application of provision of advocacy. Can you expand a little bit more about how you see the community developing that, and what benefits do you see, then, in these provisions for vulnerable individuals?
Ms Snow: The strategies I am most familiar with are building support circles around people who have become isolated, recruiting volunteer citizen advocates to represent people's needs and interests, and also recruiting facilitators to build support around people when they are missing. I do not think by any means that those are the only strategies that might become possible if a large number of people actually sat down and said: "Okay, how will we prevent people from becoming isolated in our society? What will we do to rebuild their networks when they have become isolated?"
I guess the only other thing I would like to say about vulnerable people is that what makes them vulnerable is not their disability but their isolation, the fact that people do not see them as having any valuable contribution to be making even when in fact they may be making that contribution right under people's noses, but people do not recognize it.
Something needs to be put in place that allows people to see that people are already contributing, and that their contribution is valuable, and that that contribution could be made more powerfully if they were placed in the community and properly supported. Then they would not be so much at risk.
Mr Malkowski: Just another question in relation to how you feel about some of the physicians who are doing medical research, for example on disabled individuals who have been labelled incompetent -- just your personal view on what we have heard on those issues.
Ms Snow: I was involved in a court case almost 10 years ago -- about eight or nine anyway -- where a doctor at Queen's University was doing medical research on people on Onondaga without written permission and actually training students by using the bodies of these people without their permission. The law, as it exists now, revoked her licence. I think that was the right thing to do. I do not know whether we need new laws to able to do that. What we need is for people to be more aware of the fact that when people are isolated in services and in institutions, they are incredibly vulnerable to that sort of abuse.
The Chair: On behalf of this committee, I would like to thank you for taking the time out and giving us this presentation today.
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MOSHE GREENGARTEN
DONALD STUSS
DAVID CONN
The Chair: I would like to call forward our next presenter, the Baycrest Centre for Geriatric Care. Just a reminder that you will be given half an hour for your presentation. The committee would recommend that you limit your remarks to about 15 minutes to allow time for questions and comments from each of the parties. When you are comfortable, could you please identify yourself for the record and then proceed.
Dr Greengarten: My name is Moshe Greengarten. I am with Baycrest Centre for Geriatric Care. My colleagues are Donald Stuss and David Conn.
I mentioned to the clerk that what has been circulated to you is not the formal submission of Baycrest Centre for Geriatric Care. That is a submission of the Baycrest competency clinic, which is a component of Baycrest Centre. I just would alert you to that.
My colleagues and I are pleased to have the opportunity to make this presentation to you. I will be commenting on certain aspects of Bill 74. Dr Stuss's remarks will focus on problems posed for Alzheimer's research and Dr Conn will have something to say about non-emergency medical treatment of incapable patients and the assessment of incapacity.
As we noted in our written submission to you, vulnerable persons and persons who are incapable of making certain decisions constitute a large and varied group of people, including the frail elderly, developmentally handicapped, physically disabled and psychiatric patients.
Our expertise lies primarily in the area of the elderly and we have limited our submission to this population. It may well be that the issues we raise have little or no bearing on other vulnerable groups. However, we believe that failure to address these concerns will have significant negative consequences for older adults and their families in Ontario.
We have many specific concerns about the Advocacy Act, which we have outlined in our brief, including its failure to identify the specific advocacy model to be implemented, the need to establish the qualifications of advocates, the apparently costly and bureaucratic nature of the advocacy system, the excessive powers of advocates, and the potential for duplication of service between the advocacy program and the new service coordination agencies planned as part of the redirection of long-term care services.
However, our single greatest concern rests in another area. While there is clearly no intent to do so, Bill 74 defines an advocacy system which is highly adversarial. We are concerned that the proposed universal approach to advocacy will set up confrontational relationships within families, setting family members against each other and against their vulnerable relatives. Except in extreme situations, an advocacy program should be supportive of family relationships and of care-giving relationships generally, including those involving providers of health care and social services.
The adversarial nature of the proposed program seems to be implied in the powers granted to the advocate, including the right of entry and inspection of records. The only justification for such excessive powers would be evidence of wrongdoing or abuse. Yet the proposed legislation does not require that such evidence be demonstrated in a court of law. The only other possible inference is that such powers would be used for fishing expeditions. Unbridled powers of entry and access to records can only lead to an adversarial relationship between advocates and facility-based care givers.
In sum, successful advocacy programs should be based on relationships of mutual respect and confidence, with a view to protecting the rights of individuals while preserving intact to the extent possible formal and informal care giving and nurturing relationships. It is this type of approach which will in the long run lead to an improvement in the condition of vulnerable persons in this province, both on an individual and a systemic basis.
It is therefore our view that the introduction of advocacy legislation should be delayed until there is further investigation into the most appropriate advocacy program for older adults in Ontario. We caution that amendment of the Advocacy Act is not sufficient; a rethinking of the entire approach is necessary.
At the same time, Bills 108 and 109 should be amended to remove reference to the advocacy system. With the exception of the area of non-emergency medical treatment, which will be addressed by Dr Conn, all of the identified areas of involvement of an advocate in Bills 108 and 109 also involve either the public guardian and trustee, the courts or the Consent and Capacity Review Board. It would therefore appear to be more efficient and effective for these bodies to intervene if there are reasonable grounds to indicate the need for intervention rather than to assign responsibilities to the proposed advocacy program.
Dr Stuss: My name is Don Stuss. I am vice-president of research at Baycrest Centre for Geriatric Care and director of research at the Rotman Research Institute of Baycrest Centre.
I would like to say at the beginning that I believe that there are very positive aspects to the bills in question. Some of the questions I am going to raise may be on my own personal misinterpretation of the bills. However, it is also my understanding that the purpose of this committee is to hear concerns about problematic issues and/or ideas and ways to improve the bill. I wanted to present to you three assumptions and some of the problematic issues that these bills in question present as they relate to research, particularly with regard to the incompetent elderly individual.
My first assumption is that appropriate treatment and adequate care of patients are based on knowledge, and the validity of this knowledge is proven through research. Throughout history, advances in all aspects of health care have resulted from the validity and research into the efficacy of many aspects, such as treatment, management, and health care attitudes.
Second, if this is true, one should also realize that knowledge is incremental and often developed in small building blocks. The bills as written, as I interpret them, would stop all research in the incompetent and frail elderly individuals for this century and likely beyond. It is unlikely that individuals will respond to the request to sign advanced directives, even after a large-scale public education program. I think this has some serious consequences.
As a researcher, I can tell you seriously that we would rapidly lose our core of established researchers and the best clinicians who want to do research will leave the province to work in other domains. We would not develop young researchers. We would not have constructed the essential building blocks to maintain the adequate base of knowledge required to maintain care. The necessary consequence will be eventually deteriorating levels of care for the vulnerable, incompetent, elderly citizen of this province.
Third, necessary research involving the frail and incompetent elderly includes both non-invasive and invasive procedures. Much research into dementia, for example, involves non-invasive tests, such as memory and cognitive functioning, to understand how people's abilities alter with these disorders, but other research into the elderly with dementia may involve some invasive aspects. For example, if one wants to validate a treatment for Alzheimer's disease, it would require the taking of blood, which would be considered an invasive procedure since it would not be done for a clinical reason. It appears to me, however, that such research is essential to the understanding of failing cognitive abilities and essential if we are ever going to come up with a treatment that will hopefully lead to both improved care and such treatment.
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I think it is important to understand that we cannot assume that the principles of care and treatment for younger adults will necessarily apply to the elderly. As the population of this province ages, and particularly as the number of elderly adults of 80 years of age and over is expected to increase dramatically over the next several decades, problems such as Alzheimer's disease, other types of dementias and the medical and health problems associated with aging will reach, I think, epidemic proportions unless a cure or treatment can be found, and if no cure or treatment, unless we can come up with adequate management and strategies to take care of these individuals.
Let me give you one very simple example: fever. The definition of "fever" in the elderly is not the same as in the younger individual, because the range of temperatures is different. There is not even the basic research to understand a simple thing such as the concept of what a fever in the elderly is. Research in this area to me appears to be essential, and clearly in the public interest, particularly as the aging population increases.
It is also important to know that there are presently stringent criteria in place to safeguard the incompetent individual. As a researcher I can tell you this is true. It is very difficult, because of the criteria that are already present, to have research proposals approved. So even more rigid restriction of research involving the incompetent elderly will be at the expense of those we seek to help.
I would like to recommend, as a researcher, that paragraph 1 of section 15 in Bill 109 be deleted or after careful review be amended and that Bill 108 be amended to provide an effective and efficient means of empowering substitute decision-makers to continue to give consent to the involvement of incapable persons in research.
Dr Conn: My name is David Conn. I am the head of the department of psychiatry at Baycrest. As a clinician, I have some serious concerns regarding Bill 109. I have a particular concern with regard to the potential delaying of treatment for elderly individuals who have been found to be incapable. Studies of nursing home residents suggest that between 50% and 80% suffer from some form of mental disorder. The most common form of mental disorder is dementia, of which the most common subtype is Alzheimer's disease. To date there have been no studies to determine what percentage of nursing home residents at this time are incompetent with respect to decision-making regarding their health care. Nevertheless, a figure of 50% would seem to be quite conservative.
Whereas the intent behind this bill to protect those individuals who are incapable is clearly a step forward, there is considerable danger that many nursing home residents and other elderly individuals in the community may suffer from needless delaying of important treatment, which might lead to pain, suffering and potentially to more serious illness.
It is my understanding that once this bill becomes law, if it is unchanged, a health practitioner shall not administer treatment until an advocate informs him or her that the person has received an explanation and has not indicated a wish to make an application to the board. There is an exception. The only exception occurs when the person is incapable, is likely to suffer serious bodily harm within 12 hours if treatment is not administered promptly and it is not reasonably possible to obtain a consent or refusal on the person's behalf.
My concern relates particularly to individuals who have severe dementia; that is, they are unlikely to understand the meaning of an advocate's explanation. Indeed, it does state in subsection 10(3) that the advocate's explanation is sufficient, even if the person does not understand it. This would seem to be an unnecessary exercise that could potentially delay vital treatment. The individual's rights are not being protected if he or she is denied necessary treatment. The health practitioner would face a serious dilemma in trying to determine when an individual is likely to suffer from serious bodily harm.
The elderly are particularly vulnerable to even minor illnesses which can rapidly progress to more serious states. If an individual is suffering from pain, for example, under this act it would not be possible to administer analgesic medication. If the person had an upper respiratory tract infection or a urinary tract infection, it might be difficult to argue that these would be likely to cause serious bodily harm, although it might be an acute confusional state resulting from such an infection which temporarily renders the individual incompetent.
If an individual were depressed, perhaps withdrawn and non-communicative, treatment would be delayed. Nevertheless, it is clear that severe depression can ultimately cause major problems such as suicidal behaviour, decreased oral intake and eventually life-threatening deterioration.
We therefore recommend that Bill 109 be amended to eliminate unnecessary and potentially harmful delays in the treatment of incapable persons in non-emergency situations. A differential could be considered whereby various forms of treatment are categorized. Such stringent criteria as are contained in this act might be appropriate with reference, say, to surgical intervention, but seem to be excessive with regard to maintaining, adjusting or initiating routine medications.
Whereas it is recognized that in the ideal situation all such individuals would have an attorney for personal care or a guardian, the reality would appear to be that at the point when this act becomes law an enormous number of elderly individuals will not be in this position. This fact must be considered in order to prevent serious delays in treatment. I suppose one concern is just how long it will take to get an advocate. If we are talking here about 600 nursing homes and homes for the aged in Ontario with perhaps more than 50% of the individuals being incompetent, that is a lot of individuals who will be affected when this bill becomes enacted.
Finally, a few comments on assessors. We are somewhat disturbed by the lack of specific details in either Bill 108 or Bill 109 with regard to the definition of qualifications or training for assessors. The Weisstub report and the work of the Baycrest competency clinic have shown that the issue of competency is very complex. It seems to be critical that appropriate programs for the training and certification of assessors, who might include physicians and other health practitioners, be established. It should also be recognized that the issue of developing methods and criteria for assessing competency will require further investigation and research.
We would respectfully suggest that the Baycrest competency clinic, which is unique in Canada, should be considered as a primary resource in the implementation of ongoing educational and research programs with respect to the determination of competency and the training of assessors. It is certainly critical that in order to avoid mass confusion more specific details should be worked out with regard to these qualifications prior to the passage of this legislation.
Mr Chiarelli: Thank you very much for your submissions. The comment was made that you would like to see some delay in this legislation and also some significant amendments. I think you ought to know that from our perspective on this side the government has no intention of delaying or redrafting this legislation. In fact, an NDP document yesterday showed that it is still one of its priorities and it intends to proceed with it. I had made on several occasions the suggestion that this legislation be withdrawn and then resubmitted to the committee so that it could be redrafted and looked at and restructured in a way that would be appropriate for a consensus of people who have come before this committee, most of whom, I might add, have very strong objections to the legislation in spite of some of the comments that most people are in support.
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Significant groups, experts, non-experts, have very significant concerns about this legislation. They also have a sense that in the long run or in the end the bill, when it comes forward, will address all these concerns. There are so many amendments which have been recommended and suggested on so many aspects of this legislation that to amend it in clause-by-clause would effectively redraft and rewrite the legislation.
I am very concerned about this legislation. What I have been doing with groups which have been coming in is asking them to work on the assumption that no amendments will be forthcoming because we have not seen any, and I am asking them what will happen in the field. "What will happen in your area of expertise, your area of care giving, if this legislation were to pass as is?"
We have had physicians coming here saying they will ignore it, we have had physician representatives of hospitals saying it would create chaos, we have had representatives for nursing homes saying that it will make their work almost impossible, and I have to assume that they are here with good intentions and that they really care for the people they serve and they care for the process. They are not here playing politics; they are here saying what they think actually will happen.
I am concerned that this government is not listening, that this is on its political agenda and it is going to proceed. I am hoping that if people like yourselves will say what will happen in the marketplace, in effect, if this bill passes as is, that maybe it will have an impact and maybe they will defer it, maybe they will redraft it or maybe they will look at another process. But quite frankly I am afraid they are going ahead with it, they are going to amend it as best they can to meet their political agenda in the next three or four months.
So could you tell me how you think this will work, as presently drafted, in your area of expertise?
Dr Conn: I think that with reference to Bill 109 and issues of consent to treatment, a lot will depend on how rapidly individuals and their families are able to put into place powers of attorney for personal care or guardianship. From my experience, these processes do not occur overnight; it takes a lot of time and energy and legal advice and the courts sometimes, or in this case, I suppose, a much enlarged office of the public trustee and guardian to put into place a legal process whereby the health care practitioner will know who to go to to get consent.
My concern is that there will be thousands and thousands of individuals who will not have this process in place, and therefore it will be necessary to bring in advocates. I do not think we have any sense of what it would be like for advocates to come into nursing homes, for example. So much would depend on the design of that particular program. Hopefully the advocates would work with the health practitioners in the service of the individuals. There is a lot of concern, however, that the advocate's role might not be one of simply helping and assisting.
What is the individual health practitioner going to do when he is faced with an individual who is incompetent and who is suffering, who needs some sort of treatment or help? I do not know. Much will depend on the individual ethics, perhaps, of the practitioner. If they are going to abide by the letter of the law, then they may have to not treat someone who seems to need treatment.
Mr Chiarelli: Do you think there will be great variation in how this law is implemented and responded to?
Dr Conn: I think that is very possible, yes.
Dr Stuss: I would like to comment. It has taken a long time to get researchers interested in the problems of the elderly. It is just in the last five to 10 years that we have gotten to build up a certain corpus of young individuals, older individuals who are geared in understanding medical, psychological, psychiatric, sociological processes that occur both in normal and abnormal aging, "normal" meaning the issues of Alzheimer's disease.
There is a tremendous fear of brain drain. I am a director of a research institute. I have a very difficult time recruiting people because most of the people already want to go to the United States. One of the things I offer them is the ability to be involved in a place where we are truly concerned and the research is dedicated to understanding and improving care. It would be virtually impossible for me, I think, to build up a research institute and to attract individuals.
I cannot emphasize enough the concept, and I know we are talking strictly from the aging population, that we really do not understand even basic biological processes of normal aging. We just have not got the basic research done, things such as, as I said, fever, things such as variations in olfaction, just in smell and how these might affect things, not including aspects of disorders that might affect different kinds of types of dementias that do occur. My feeling is that we would have a very difficult time.
Without this kind of research we would have a real problem. Let me give you a practical issue that occurs. For example, an elderly patient may have a stroke in a very small area of the brain that would make this person appear very incompetent because he could not express his thoughts. What you would find, if you were able to evaluate them properly, is that they are competent if it is presented to them and expressed properly.
This knowledge was advanced through research in brain behaviour type aspects. You would never be able to find individuals who would be able to make the adequate assessment unless you had somebody who is a specialized health professional. So I have tremendous concerns for the future of Ontario, not just in the short term but in the long term.
Mr J. Wilson: I very much appreciate the concerns you have brought forward in a very well-written brief. As Health critic for the Ontario PC party, there is one area, and I know it is hardly the most important concern, but I have heard a lot of the other ones before, and if it is any comfort, we will be bringing forward amendments to try to straighten out some of this stuff, particularly in the area of research.
On the redirection of long-term care, just your couple of paragraphs here on that, I would like to take the time to ask the parliamentary assistant what the relationship will be between the Advocacy Commission and the advocates and the service coordination agencies that have been and are being established under long-term care reform.
Mr Wessenger: I do not think I could really answer that question because we have not yet determined what the role of the advocates is going to be. We are still in the -- I think you would have to ask the --
Mr Chiarelli: You have got to be kidding me. You are bringing forward this legislation and you do not even know what the role of the advocates is going to be? What an admission.
Mr Wessenger: I am just suggesting that it is a matter for the parliamentary assistant of Citizenship to answer with respect to what role the advocates may or may not play. But I would suggest that the whole concept of the act is for the Advocacy Commission to determine the role of the advocates and the recommendations with respect to this role. It is an evolving process, and I will just turn it over to the parliamentary assistant to confirm that.
Mr Malkowski: I would like to refer this to counsel to clarify this point.
Ms Spinks: With respect to the Advocacy Act, I think it does set out in section 7 what the role of the advocate will be in providing systemic advocacy and in providing advocacy to individuals who are vulnerable. I do not think that there will be a distinction in terms of vulnerability. If the person is vulnerable and is involved in some kind of a project or facility related to long-term care, that will not make any distinction. If they are vulnerable, they have access to the services.
Mr J. Wilson: The point here is it does sound as if, especially when you put it in legislation, this Advocacy Commission is going to be politically active, advocating systemic advocacy, and it has a bias. It is supposed to be arm's length from the government, but it is stacked with vulnerable people. They raise a very good point that has not been raised before about also having these 40 coordinating agencies under long-term care.
It makes me suspicious with the answer from the parliamentary assistant to the Minister of Health, like Mr Chiarelli's suspicion, that this is just a politically driven piece of legislation. It does not appear that the government and the various ministries really know what each is doing.
Mr Wessenger: With respect, Mr Wilson, I think it is very clear that the role of the advocate with respect to the Consent to Treatment Act is only as a rights adviser, and that is the only aspect which deals with our legislation.
Mr J. Wilson: I sure hope you are right, but I have a feeling you do not know what you are doing.
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Ms Carter: I think first of all I will just add to what was said following the previous question, that long-term care is still out for discussion. That is not cut and dried either, so I think the questions may be a little bit premature.
I want to address Dr Greengarten's condemnation of advocacy, and I do personally have special concern for the elderly. Obviously it is not needed when family and care givers are supportive, and somewhere in your brief you do acknowledge that there are occasions when this is not the case. Sometimes family and care givers can be guilty of neglect and exploitation or not regarding the wishes of the vulnerable person.
How will evidence of abuse come forward if the abused person cannot express himself and does not have access to an impartial person? You say that you think the powers of entrance accorded to the advocate are excessive, but how else can this kind of abuse be uncovered and dealt with?
Dr Greengarten: Thank you for raising that point. As we know, probably 80% to 90%, maybe even over 90%, of care for older adults is provided by their families, and there is a small proportion of situations where there is abuse that occurs and we believe that abuse should be addressed aggressively. What we have concern about is the universal application of a system when the problems, we believe, are an exception rather than the rule.
We do believe that these situations should be identified for the authorities, and one approach we have discussed is perhaps to require health care and social service providers, as well as others in the community, to report evidence of abuse -- and I am referring to abuse in the broadest sense -- to appropriate authorities. This type of requirement, which exists with respect to child protection legislation, for example, does not exist with respect to the elderly. We believe that this type of approach would identify those specific situations where abuse is occurring and we believe that in most of these cases, even where abuse is occurring, it is not because there are evil people, it is because there are care givers, mostly family care givers, who are under extreme pressure to provide care for their loved ones. The abuse that results is abuse which occurs growing out of that care-giving relationship. Fundamentally, we seek a system which supports the family care giver and does not intrude and undermine it.
Ms Carter: But we feel that is what advocacy is offering, and you were suggesting that this kind of thing should go before the courts. I think we are hoping to avoid that. Sometimes there have been tragedies of neglect and abuse such as Cedar Glen, and coroners and juries have called for an advocacy service. Do you think this is wrong, for coroners, juries or O'Sullivan in his report to call for advocacy?
Dr Greengarten: I think the difference is whether we have a universal system which is applicable to all elderly, potentially, and which gives case-finding powers or fishing expedition powers to advocates, as opposed to a system which addresses identified problems of abuse which have been identified by health care professionals or families or others and which we believe will come to light if professionals and others are required by law to report such incidences of abuse.
We definitely believe that situations of abuse should be investigated by properly trained authorities. However, the difficulty is that this legislation as it is presented, at least as we understand it, would create a network of people to investigate situations where there is absolutely no evidence of abuse, where probably the problem is one of differences among family members, for example.
We deal on the front lines with families every day and with older people, and the issues are very difficult. The decision to care for an older person, to institutionalize an older person or not to institutionalize an older person, is a very traumatic one and one that tears families apart day in and day out. It is very common, in fact it is the rule, as far as our experience goes, that where you have, for example, an older person and two or three children, there are often disagreements among them about what the best course of action is to follow. If one of these children or an older person were to launch a formal complaint or to seek an advocate to intervene, we are concerned that this would not be the best approach, and this is not what the advocacy system is intended to do. So that is what our concern is.
Ms Carter: It seems to me that this is the least intrusive type of follow-up, but I would like to call on Mr Fram to comment.
Mr Fram: On the issue of abuse, one of the key concerns of organizations like the Advocacy Centre for the Elderly is that in the jurisdictions where there is mandatory reporting, serious problems of institutionalization are a result.
As you are probably aware, Bill 108 provides that the public guardian and trustee is given authority and indeed a duty to investigate allegations of abuse when serious illness or injury, deprivation of liberty or personal security require prompt action. I think that is the aspect you are addressing your mind to, and I think there is general consensus that this is probably the most sensitive approach to avoiding institutionalization in situations where there are allegations of abuse.
Dr Greengarten: I am sorry. I am not clear what you are saying. In the case of older adults, are you suggesting that the concern is that abuse will lead to institutionalization?
Mr Fram: That legislation which focuses on adult abuse in general leads to institutionalization, legislation like that found in the US. It is found that the strongest legislation dealing directly with the issue of abuse is found in those places with the fewest services to support family, to support the working out, the mediation of problems, the keeping of people in their homes and so forth, the background of service. It seems easier for a government to put forward legislation that on its face appears to address an issue of abuse, gives the authorities, the equivalent of children's aid associations etc, authority to come in, move the person to a hospital facility or place of safe keeping, from which they do not often emerge. That seems to be the pattern where abuse legislation is the focus.
There are two aspects to the Bill 108 approach which are important. First of all, it does not require that all abuse of adults -- adults by and large, as you know very well, can maintain their own integrity and decision-making functions to very great ages. It does not focus on the issue of ageism at all, which is a problem in our society. Just because you are old does not mean you are incapable. This focuses on the question of mental capacity and risk, and I think this is a model we believe will achieve the least intrusion and the best result.
My concern was focusing on abuse legislation, which then leads to other things like concern for avoiding risk and doing all sorts of assessments which are predictive of risk, which so far have not gotten beyond 50-50 in terms of predictability in family relations. Why I wanted to speak was because I have a great concern that the committee might be directed to thinking about abuse legislation.
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Mr Greengarten: Certainly you have far greater knowledge of these other forms of legislation than we do and we would not pretend to know that. What we do believe, though, is that this is a highly intrusive system that is proposed.
Mr Fram: On the issue of intrusiveness, if I can pick --
The Chair: Thank you, Mr Fram, we have to move along now. Mr Wessenger, very shortly.
Mr Wessenger: I would like to ask you with respect to the matter of research on incapable persons, are you saying you want it to be ensured that the existing law remains in effect with respect to that aspect?
Dr Stuss: Probably. I am not sure if I know exactly all the details of the existing law. I do know that in practice, through the University of Toronto and ourselves, we have considerable safeguards at the present time and it seems to me that the law, as I read it at present, goes far beyond the safeguards that are presently available, which seem to be --
Mr Wessenger: I would just like to comment on that. The clear intent of the bill is not to change the existing law at all. In fact, we have advice from our counsel that the legislation does not at all affect the existing law with respect to doing research on incapable persons. If any clarification is needed in that regard, I am sure that clarification will be done. But just to follow up on this question, I would like to ask you, is research presently done on incapable persons?
Dr Stuss: At the present time? Certain types, yes.
Mr Wessenger: I assume you understand the law that only therapeutic research may be done on incapable persons?
Dr Stuss: Yes.
Mr Wessenger: So you would say all research that is being done falls under the category of therapeutic research?
Dr Stuss: That is logic, is it not? If some, if all -- I am not sure if I followed that through --
Mr Wessenger: I am just asking, can you assure me that in your experience all research falls within the legal category? Is all research being done presently legal, in your opinion?
Dr Stuss: Certainly in our institution, yes. We certainly make every effort, and we have a legal expert who heads up our ethics committee to ensure that occurs.
Mr Wessenger: Are you a hospital under the Public Hospitals Act?
Dr Stuss: Part of our facility is, yes.
Mr Wessenger: So your research is done under the authority of the Public Hospitals Act, which would be to obtain the consent of the substitute decision-maker under that act. Is that correct?
Dr Stuss: Yes.
Mr Wessenger: I was wondering if any of you have read the comments of the Minister of Health with respect to what areas of Bill 109 she is looking at. Have any of you had any information? I would like to indicate to you that the minister has indicated that the emergency powers provisions are being looked at, in particular, the provision with respect to the 12 hours and also with respect to the matter of relief of severe pain. I would like to assure you that those are certainly under consideration.
The Chair: A brief comment, Mr Chiarelli.
Mr Chiarelli: Just very briefly, the comment was made with respect to the principle of advocacy by Mrs Carter. I think virtually every presenter who has come here has supported the principle of advocacy, but the principle of advocacy can have a wide range of possibilities in legislation or non-legislation. I think we are not arguing the principle of advocacy in any way, shape or form; we are arguing the particular provisions of this bill as to how those principles will be implemented. I think it is very important to make that distinction. I think very few of us will disagree with what Sean O'Sullivan had to say, but it is obvious that a lot of people disagree with this legislation.
The Chair: Dr Greengarten, Dr Stuss and Dr Conn, on behalf of this committee I would like to thank you for taking the time out this afternoon and coming and giving us your presentation.
Dr Greengarten: Thank you very much. Good luck.
STANLEY WORONKO
The Chair: I would like to call forward our next presenter, Stan Woronko. Good afternoon. As you know, you will be given half an hour for your presentation. The committee would appreciate it if you would hold your remarks to about 15 minutes to allow some time for questions and answers. As soon as you are comfortable, please identify yourself for the record and then proceed.
Mr Woronko: I am Stan Woronko. I am a parent of a vulnerable person and am here not representing any group or association. I am merely here to voice our family's concerns and to voice our support for the adoption of the Advocacy Act.
By way of background, I want to tell you a bit about my daughter. She is 20 years old now. She suffered some severe reactions to her vaccinations as an infant and she suffered brain damage as a result, so this slowed down her development. Today she is 20 years old. She does not speak; she does not use language to communicate. She uses two hand signs we have taught her, and uses those reliably. But in general she communicates by sort of inventing her own system. She takes us by the hand to different parts of the house if she wants something, for example.
The point of all this is that we have had a lot of experience in trying to make Katherine belong to the real world. Some of those challenges have been with her training, and we have had more than our share of behaviour management programs and learning how to use positive reinforcement and all those things. Those were challenges, but not the formidable challenges. The formidable challenges have to do with dealing with the institutions of our society, the bureaucracies and the attitudes.
These barriers we faced started from a very early age. For example, when she was still an infant we received advice from health practitioners to place her in an institution. This would certainly have made our life simpler, in some ways much simpler, but at the same time she would have been forgotten. We doubt anyone else in the world would have paid attention to her. Such solutions are not really solutions.
The other examples we faced with the health system are cases where we were denied certain forms of treatment for her because of her prognosis. An example of that is that when she was three years old and still not able to walk, a neurologist in a famous institution here in Toronto refused to prescribe physiotherapy services because his prediction was that she would never be able to walk, so it would be a waste of time. Well, she did learn to walk when she reached the age of six.
I guess the most strenuous obstacles we faced were in dealing with school boards and educational systems. In most school boards in Ontario, the general practice is to segregate students who have exceptionalities, and it makes it very hard to integrate them into society.
The point of these examples is that when bureaucracies, institutions and professionals, and sometimes even parents, purport to do something on behalf of vulnerable persons, they are often proposing actions or decisions which really are meant to make their lives easier and to make the systems easier to administrate rather than to serve the interests of the vulnerable persons. Examples such as the use of cattle prods or segregation clearly show that there are certainly situations where the best interests of individuals who are vulnerable are not served well by bureaucracies and institutions.
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For these reasons, I strongly support the Advocacy Act. I recognize that the way it will be implemented is not at all clear, and I will address that within my recommendations. Nevertheless, it is definitely needed and is a step in the right direction.
A few of the concerns which I would like to raise are as follows. One, I would recommend that the act apply to persons of any age. Children's rights need to be protected as well. Sometimes parents, though they try to be advocates, get burned out because of the pressures of their family situations. They find it very difficult to face powerful bureaucracies and they could use support from an advocacy system. This support could be in the form of education or simply occasional support or advice. Nevertheless, children's rights are subject to abuse as well as adults' rights.
The second recommendation is that the schedule of facilities covered by this act should include facilities governed by the Education Act and by the colleges and universities act, because education is fundamental. It is a very fundamental right, and the quality of education that people receive, particularly in the case of people who are vulnerable, may have a very strong long-term impact on their lives. Education, being that it forms such an important foundation for life, is crucial.
The right to look into situations that arise in schools, for example, is very important. One example is a case where one year our daughter, through our pressure, was integrated into a regular high school and some regular classes, and she needed the support of educational assistance. On a couple of occasions it was reported to us by her peers, who were acting as natural advocates in this instance, that the educational assistants were being abusive and putting undue pressure on her. For example, she was afraid to go up and down steps. They would get very impatient and angry at her if she did not do it fast enough. So instances like this where a person is being subjected to some form of abuse -- our daughter was getting very nervous after a while and was very apprehensive of anyone being around her -- need to be looked at.
In our daughter's case, she was not herself able to communicate to us what was happening to her. We were lucky that she had friends, natural friends, who were able to report this to us; otherwise, we would never even have known about it. Nevertheless, even though we did get some information like that, it was very hard to deal with the school system because it is a very closed system. Everything goes on behind closed doors. You have the opportunity to report to the principal any abuses, but what is done about it is very hard to verify.
The third point I would like to raise is that with regard to encouragement of advocacy by organizations and within community organizations, I think the act should recognize that sometimes a conflict of interest could develop. That should be addressed, that some organizations provide services, and advocates who work for those organizations might not be effective advocates with respect to the quality of those particular services.
Another example would be that where an organization is funded by government and that same ministry is doing something which is not recognizing the rights of an individual, it might be harder for an advocate to deal effectively with that particular ministry. So I do not think we should prevent organizations from having advocates, but I think the situation of conflict of interest should be identified and addressed.
The fourth recommendation is that we not stress too much the academic qualifications of advocates, but more their basic qualifications in terms of abilities, interpersonal skills, value systems and so on. I would not like to see a system where qualified people are excluded simply because they do not have a very high degree of formal academic qualification.
I also recommend that a code of ethics be developed, and this could be part of the function of the commission.
Fifth, I want to stress the role that natural advocates can play. To be an effective advocate, one has to know the person for whom one is advocating. I do not believe paid advocates can do the job entirely on their own. Their contribution could be very strong in the area of knowing the system, knowing the laws and having a broad range of experience; however, knowing the person is very important. Some people are lucky enough to have friends and relatives who are good natural advocates, or potentially good natural advocates, and one system should not replace the other. They should be mutually supportive. This would not only be more effective, but would also provide some leverage in terms of the costs of running such a system.
The act does not spell out how advocacy would be promoted by community agencies or within the more natural settings. I believe there is some reference to it in section 1, but I think it could be spelled out a bit more explicitly. In particular, for example, I would visualize having courses for volunteers, training sessions made available to become more familiar with the laws, learn how to negotiate, learn self-assertiveness and so on.
By the way, self-advocacy would also be promoted this way. Some people who are vulnerable -- indeed, anyone -- may not be an effective self-advocate in every area. It is possible that some people may need help when it comes to advocacy in certain areas but that in other areas they may be able to handle it on their own, and I think that should be encouraged.
Finally, in closing, I would like to bring to your attention a poem on the final page of my brief. I do not necessarily want you to read it now, but do read it. I think it evokes very strongly why we need an advocacy system, and does this better than what we could do with any legal or academic analysis. Thank you.
Mr Chiarelli: Mr Woronko, thank you very much for your comments, particularly your suggestions and recommendations. I think virtually every one of them deserves consideration by this committee if it is going to proceed with the legislation.
I want to ask kind of a hypothetical question of you. It has more to do with Bill 109. Let's say Katherine were to find herself in the emergency room of a hospital or at some clinic or before a medical practitioner because of some illness or injury not related to her disability; she just needed medical treatment, and this illness came upon her or she was injured, unknown to you. If somebody brought her to the hospital by ambulance or what have you and there was an issue on the part of a physician as to some treatment that was necessary for Katherine, how do you foresee the communication and the decision-making taking place under those circumstances?
Mr Woronko: I would assume, first of all, if contact could not be successfully established, that the attending physician would have the prerogative and the right to make a professional decision on what is in the patient's best interests.
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Mr Chiarelli: Would Katherine be able to communicate?
Mr Woronko: No, she would not. I think it would fall in a similar category to if a person was injured and unconscious and the doctor had to make a decision about what to do about it.
Mr Chiarelli: The reason I am asking that question hypothetically is section 10 in Bill 109. I will read it for you so you will get an idea of what we are talking about here, because I am concerned about parents and family members, such as yourself, under these circumstances with the provisions of Bill 109. It says:
"When a health practitioner finds that a person who is 16 years of age or more is incapable with respect to a treatment, the health practitioner shall,
"(a) Advise the person of the finding, unless the person is unconscious."
The health practitioner would have to try to advise Katherine.
"(b) Give the person a written notice (which may be in the prescribed form), unless the person is unconscious, indicating that the person is entitled to meet with an advocate and is entitled to make an application to the board."
That written instruction would have to be given or shown to Katherine, whether it is appropriate or not. It is a requirement in law.
"(c) Notify an advocate of the finding."
I asked the question last week, most particularly. I say, therefore, there is a legal obligation under those circumstances, before treatment is given, that an advocate must be notified, and the advocate must then come and advise Katherine of her rights before treatment can be given. I asked specifically, "Is there a legal obligation to try to contact a parent?" and the answer was no.
I am concerned about the advocacy provisions of Bill 109 as it applies to people like Katherine and many others, and I think this committee has to seriously reconsider how section 10 of Bill 109 operates; at the very least, perhaps, write in a provision that says that the medical practitioner, in addition to notifying an advocate, has a legal obligation to endeavour to find out if there are family members, where they are, and also to notify them of the circumstances. At the very least, you will have two things coming together at the hospital or in the emergency room; you would have an advocate coming as well as a parent.
In many cases you may find that the medical practitioner would automatically and out of courtesy notify a parent or a relative to come to the hospital because there is some kind of emergency, but that is not now in the law. The only legal requirement is to notify a third person, a stranger, an advocate, to come and advise Katherine. Would Katherine be competent to understand what an advocate might be communicating to her?
Mr Woronko: No. In reference to this question, is that the section of the act that lists a priority list of people who may make the decision?
Mr Chiarelli: No.
Mr Woronko: That is another one, okay.
Mr Chiarelli: If I can be very clear, you have a physician in an emergency room --
Mr Woronko: Yes, I understand.
Mr Chiarelli: -- and Katherine is there, and he is deeming that he cannot receive instructions for treatment from Katherine. The law says his legal obligation is to notify an advocate, and it stops there.
Mr Woronko: My suggestion in this circumstance would be that if it is an emergency that cannot wait for that advocate to come, that my daughter or the person's health would be in serious jeopardy if this contact could not be made in time, there should be a way for the physician to go forward and do the treatment, just as he would do for an unconscious person.
Mr Chiarelli: There is a way, and there are provisions in here for the physician's proceeding in certain emergency circumstances, and we have heard that they are going to be proposing some changes to that. But failing that, and you take it the next step, if the treatment can be deferred for a short while, it is not an emergency, there is still a legal obligation for the medical practitioner to get in touch with an advocate and not to get in touch with the parent. How do you feel about that?
Mr Woronko: I guess I misunderstood, because I did not address that bill, so I do not know very much about it. I was under the impression that there was a priority list, and the parents came before the advocate if the person was not under a guardianship.
Mr Chiarelli: That is a totally separate issue in a different context.
Mr Woronko: Okay. In this instance, I would prefer that the doctor be in touch with the natural guardians, the parents or the family, the relatives of the person if those are known, if there is some information or identification. That would be the first line.
Mrs Cunningham: Thank you for appearing before the committee today to give us some good advice. I wonder if you had a chance to take a look at Bill 109 or Bill 108.
Mr Woronko: Just a bit. I get lost in the intricacies of the guardianship.
Mrs Cunningham: I think it is one of the problems that the government should be looking at. As parents, it is very difficult to know even which ministry to address. Bill 109 is the Minister of Health, Bill 108 is the Attorney General and Bill 74 is the Minister of Citizenship.
I too am a parent of what would be considered a vulnerable child and have some interest in this legislation and find it particularly confusing. I hope the government will take that under advisement, even if it means a total redrafting of the intent. I think the intent is admirable; I just find it extremely confusing. I would ask you if you will take a look, as a parent -- we do not often get parents before this committee -- at Bills 108 and 109. My colleague mentioned section 10 of Bill 108. Is that right, Bob?
Mr Chiarelli: Bill 109.
Mrs Cunningham: Bill 109, and the other one there would be section 16. If you would do that, we would appreciate it, and if you have any difficulty getting these documents, we will be happy to provide them to you.
Mr Woronko: I have a copy. I will do that.
Ms Carter: Thank you for your very constructive presentation. You do seem to have entered into the spirit of the act as we see it. Do you agree with the consumer-based control of the advocacy system that is outlined in the bill? I am sure you are aware of section 15, where we list the different groups that need to be represented on the body that appoints the commission. Also, the commission itself is envisaged as being at arm's length from government and having a very independent role.
Mr Woronko: I think that is essential, that people who are vulnerable have a strong voice in the way things will be run, because they are the ones facing the situations on a daily basis and are more aware of what is required. If somebody else stepped in to do it for them, then it would be another case of substitute decision-making.
I have some slight concerns about certain organizations that act on behalf of persons with disabilities. Some organizations are service-oriented rather than advocacy-oriented. They may tend to be defensive and protective rather than progressive. So there is a danger there. Some organizations are more geared to raising money for charity, but I do not think one can draw a sharp line. One has to accept these realities but be aware of them.
Ms Carter: Yes. The qualifications of advocates will be decided by the commission, so your point 4 will be dealt with at that level.
Some parents have come before us saying that as parents of a younger child, they were in control of the situation, but when the child becomes an adult -- in your case, you say your daughter is 20 -- they are not included in the process if, for example, their child was in an institution. Can you comment on that?
Mr Woronko: This is the point I try to make in my fifth recommendation. I think the advocacy system should try to be a mutually supportive system to try to take advantage of natural advocates. If parents are there and they are interested, they should be invited to be involved and to work things out cooperatively.
Ms Carter: Of course, we did not envisage children as coming under this, because certainly, under a certain age, they are not able to express opinions that should be taken into account in the way that those around a person should. But you seem to be suggesting -- and you are the not the first presenter to suggest this -- that in a sense, an advocate could help the parents of children in this position because they do carry a very heavy burden and they need a little help and guidance.
Mr Woronko: Definitely. First of all, parents may have extraordinary demands on them simply because of the day-to-day situation in the home and whatever. Then, having to deal in a first-time acquaintance with some very unique obstacles that one did not expect with some powerful bureaucracy can be very difficult, and many parents just simply give up and just accept what is available, and their children suffer.
Mr Wessenger: Thank you for your presentation. I just thought I would try to clarify something with respect to the Consent to Treatment Act. I am of the opinion that, really, in your particular situation that act would not interfere with the communication between the medical practitioner and yourself, because what the act provides in section 10 is that the advocate meets with the person who has been determined to be incapable of making a decision. It is only if that person has indicated a wish to make an application to the board to dispute the finding of incapacity -- and as you have described your daughter, she would not be able to do that. That would immediately kick in section 16, which sets out the list of persons able to receive treatment. Of course, the parent is on that list, and the only person who would have higher priority is a spouse or child. So you would be communicated with and would be the person to give the consent with respect to that treatment. Section 22, on the other hand, does provide for emergency treatment. So I just suggest, in your situation, that I think the legislation would not interfere with that aspect.
The Chair: Mr Woronko, on behalf of the committee, I would like to thank you for taking the time out this afternoon and coming and giving us your presentation.
Our next presenters needs a few minutes to catch their breath, so this committee stands recessed until 3:30.
The committee recessed at 1514.
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YORK SUPPORT SERVICES NETWORK
The Chair: I now call for our next presenters, from the York Support Services Network. Good afternoon. Just to remind you, you will be given a half-hour for your presentation. The committee would appreciate it if you would limit your remarks to about 15 minutes, to allow time for questions and comments from each of the caucuses. Please identify yourselves for the record.
Ms Hubbert: Good afternoon. My name is Penny Hubbert and I am the president of the board of York Support Services Network.
Ms Paul: I am Louise Paul and I am the executive director with the agency.
Ms Hirstwood: My name is Karen Hirstwood and I am the program manager with the agency.
Ms Hubbert: York Support Services Network believes in the dignity, individuality and independence of all persons. The agency promotes, facilitates and supports community participation for individuals with special needs and their families through the provision of case management, advocacy and community development activities. We have provided case management, social advocacy and community development services within the regional municipality of York for the past 10 years, so we have been around for a while. Currently we are serving adults with serious psychiatric conditions, adults and children who have developmental handicaps and their respective families. Services are offered through a variety of programs that we provide, including the adult protective service worker program.
The comments we are going to make today are based on our experience in service delivery for the populations we serve. We will focus specifically on Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons, and Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care. Consideration has been given to how these bills interconnect with Bill 109, An Act respecting Consent to Treatment, and other existing legislation.
First, we would like to acknowledge this government's intention to protect the rights of vulnerable people, and we certainly applaud its efforts thus far. Generally our agency views this innovative legislation as a positive step and one that is long overdue. Our comments and concerns throughout this document are based on our experience in the delivery of case management, social advocacy and community development services over the past 10 years.
From our perspective, we recognize that most of what is proposed will codify the common law as it now exists. It is particularly important that the premise that an individual may be considered incompetent for specific tasks but not necessarily globally incompetent be codified. We support the premise that competence is assumed unless otherwise indicated. The following recommendations are based on our interpretation of the proposed legislation.
We will address the following: public education, training for advocates, capacity to provide rights advocacy and case advocacy, community development, financial resources, the role of the public trustee and a few operational issues. The recommendations are as follows.
Our first recommendation is that given the complexity of the various bills which comprise the new legislation, and their interconnection with existing legislation, a comprehensive public education campaign is required for vulnerable persons, their families, service providers and the community so that they are informed.
Our second recommendation is that since advocates will come from varied backgrounds and perspectives and will be required to provide services in a broad range of situations, the commission recognize training as a crucial component of successful implementation and take steps to ensure appropriate training occurs. We see this as key.
Our third recommendation is that the commission needs to be aware that many rights-related issues in community settings can be very complex and require long-term involvement to reach resolution. Having provided case management services to vulnerable populations for 10 years, we are well experienced with how long, involved and complex some of these situations can be. This fact needs to be taken into account in the commission's determination of the advocates' responsibilities in case advocacy versus their role in rights advocacy, which in our understanding is short-term.
Our fourth recommendation is that given that the involvement of an advocate will potentially increase access to resources by a vulnerable person, there needs to be an ongoing commitment to the community development component of the legislation to address unmet needs.
Our fifth recommendation is that since the involvement of the advocate potentially creates a greater vulnerability for some individuals, there should be a commitment to the provision of financial resources to provide for an alternative safe environment when necessary.
Our sixth recommendation is that the present structure and resources of the public trustee's office be restructured to ensure that office can respond quickly to issues and with the flexibility outlined in Bill 108.
Our seventh recommendation is that through the development of policies and procedures by the commission, the operational issues of authority and liability of advocates be addressed.
The rationales for the recommendations are as follows. These comments, again, are based on York Support Services Network's experience in the delivery of case management, social advocacy and community development services.
Public education: Given the complexity of the various bills which comprise the new legislation and their interconnection with existing legislation, a comprehensive public education campaign is required for vulnerable persons, their families, service providers and the community.
Many community-parent groups, such as Friends of Schizophrenics, are strongly opposed to the advocacy legislation based on their understanding or misunderstanding of the act. For example, during a presentation sponsored by our agency in May 1991 the Honourable Elaine Ziemba, Minister of Citizenship with responsibility for disability issues, was questioned by a parent of an adult who has a diagnosis of chronic schizophrenia. The question centred on the right to entry for advocates that the act provides. The parent had interpreted the legislation to mean that, based on right of entry, an advocate could enter his home at any time. The legislation clearly provides the opportunity for the commission to impose limits on the right of entry.
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This particular parent's concern was that during the times when his son is not as well as at other times, he could present any kind of scenario for someone who might not understand the situation and, based on that, would have entry to come into the home and start judging the situation.
Individuals, families, the community service providers and local government must be made aware that the Advocacy Act does not create or extend new rights to vulnerable people, but rather ensures that an individual's rights and preferences are articulated. The act is designed to create opportunities for people to take control of their lives and transform the conditions they live in.
A comprehensive public education program regarding both the existing legislation -- the Mental Health Act -- and the proposed legislation is an essential step in the successful implementation of this act. Ideally, public education will occur at many levels in a variety of ways so that we can be sure to reach the different groups in the community. As part of that education, I think people are quite surprised to find out that vulnerable adults do not have existing rights assured them.
Training for advocates: Since advocates will come from varied backgrounds and perspectives and will be required to provide services in a broad range of situations, the commission needs to recognize training as a crucial component of successful implementation and take steps to ensure that appropriate, adequate and ongoing training occurs.
Presumably advocates will come from varied backgrounds and perspectives and will be required to provide service in a very wide variety of situations. For example, given the rights of entry the legislation provides, an advocate needs to be knowledgeable about illnesses such as schizophrenia. During an acute phase of this illness an individual may make claims that are based only in the paranoia caused by the illness and not in fact. An advocate needs to be able to discern the difference between fact and symptoms of an illness. It is conceivable that in the same day the advocate would also be called upon to provide rights advice in a landlord-tenant situation. The training of advocates is a crucial step in the public education process.
Capacity of advocates to do rights advocacy and case advocacy: The commission needs to be aware that many rights-related issues in community settings can be very complex and require long-term involvement to reach resolution. This fact needs to be taken into account in the commission's determination of the advocates' responsibilities in case advocacy versus their role in rights advocacy.
York Support Services Network supports this statement in principle. However, our experience indicates that individuals whose rights have been violated or who have unmet needs often require a longer-term involvement. This involvement is generally based on a trusting relationship and provides support and skill development enabling the individual to enhance his or her own ability for self-representation. This need is often met through the provision of case management services. Our concern is that the Advocacy Commission will not have the resources to meet the volume of cases or the time to remain involved in the situations which require longer-term involvement.
For example, during the past year York Support Services Network provided service for approximately 800 people. There are an additional 300 individuals on the wait list for service. Of these 800, approximately 560, or 70%, require advocacy services. These figures represent only one region of the province and two populations which comprise a very small portion of Ontario's vulnerable citizens. In one situation, which is not unusual, it took over one year to identify the individual's issues and complete the interventions necessary to resolve the issues.
Community development: Given that the involvement of an advocate will potentially increase access to resources by vulnerable persons, there needs to be ongoing commitment to the community development component of the legislation to address unmet needs.
The Advocacy Act states that the commission will ensure that community development strategies are applied in the provision of advocacy services. However, the act makes no further references to community development. Again, based on our experience and on the literature available on the subject, the involvement of an advocate will facilitate access to community resources. Therefore, an increased and ongoing commitment to the development of community resources is essential.
Financial resources: Since the involvement of the advocate potentially creates a greater vulnerability for some individuals, that there be a commitment to the provision of financial resources to provide for a safe alternative environment when necessary.
The legislation provides the advocate with the right of entry but falls short in that it does not provide the resources necessary to ensure appropriate follow-up, such as providing an alternative safe environment, if that is required.
Once an advocate becomes involved, an individual may become even more vulnerable. For example, the maritime provinces have legislation in place which requires mandatory reporting of elder abuse. However, once the abuse is reported, there are not sufficient resources to provide an alternative safe environment. As such, the abuse is reported but the legislation does not specify who is responsible for follow-up, and the resources are not there to provide adequate follow-up. The result is that the abused elderly are more vulnerable than before the advocate got involved.
Bill 74 clearly provides for right of entry where there are reasonable grounds to believe that the health or safety of a vulnerable person is in danger. However, it provides no authority regarding the provision of resources, financial or otherwise, should a vulnerable person need to be removed from a specific environment. In our opinion, this is a critical issue. Advocates must have access to financial resources to carry out their responsibilities.
The role of the public trustee: That the present structure and resources of the public trustee's office be restructured to ensure that the office can respond quickly to issues, and with the flexibility outlined in Bill 108.
A new residential placement was arranged for a woman who previously resided in a home for special care. She was in a very vulnerable position. Once a new placement had been obtained for her, a follow-up period of a year was required to negotiate with the public trustee's office to establish the flow of funds which she was entitled to. At one point, the delay caused by this situation put the new placement in jeopardy.
YSSN's experience with the public trustee's office is consistent, unfortunately, with the example above. Lack of resources and the current structure have been cited as reasons for delays in responding to both financial situations and instances where substitute decision-making has been required. Bill 108 provides time frames by which specific steps in a process must take place. It is our concern that the present structure of the public trustee's office will not enable this to happen.
Operational issues: That through the development of policies and procedures by the commission, the operational issues of authority and liability of advocates will be addressed. Our final three areas of concern centre on operational issues.
It is our understanding that the Advocacy Act will govern all advocates. If so, how will authority be maintained in terms of volunteer advocates or those not employed by the commission? The act does not specify who has authority in these instances.
In addition, a major area of concern is the exemption from personal liability for members of the commission and paid or volunteer advocates. Clarification is needed regarding what recourse is available to a vulnerable person if an advocate neglects or defaults in the execution of his or her duties. There is irony in the fact that the advocate's role throughout Bill 74 and the related bills, 108 and 109, is clearly that of a rights adviser and is instruction-based, yet the advocate is exempt from personal liability. These operational concerns must be addressed by the commission in the development of policies and procedures for the advocacy system.
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Our final concern relates to the potential transfer of the adult protective service worker program from the Ministry of Community and Social Services to the Ministry of Citizenship. Our agency recognizes that a decision regarding this has yet to be reached. However, given the importance of the combined advocacy and case management service provided by the APSW program, we feel that we must address our concerns to this committee.
Case management is an integral part of the APSW program and is essential in the service delivery system for individuals who have a developmental handicap. Equally important is the advocacy service provided by the APSW. Combining the case management and advocacy role has worked well historically and continues to work well in many areas across the province. It is the opinion of YSSN that the information put forward by the Adult Protective Services Association of Ontario may not represent the consensus of all adult protective service workers or their sponsoring agencies.
We feel that further consultation with APSW workers and sponsoring agencies is needed before a decision regarding the transfer is reached. We are concerned that if the transfer of this program occurs, the combined role would be eroded and an essential part of the service delivery system would be lost. It is difficult for us to envisage a scenario where the APSW role of combined case management and advocacy are not intact.
We would like to reiterate that our agency views this legislation as a positive step in the protection of the rights of vulnerable people. We appreciate the opportunity to express our concerns to this committee. At this time, we will be pleased to answer any questions you have on these issues.
The Chair: Thank you. Questions and comments? Mr Chiarelli.
Mr Chiarelli: Thank you very much for your submission. I appreciate your comments and the experience from which it comes.
I am particularly interested in your recommendation 5 with respect to financial resources. Members of this committee have raised the issue of what this program and what this initiative would cost, and we have not been able to get an indication, other than it has not been costed out. You have raised a secondary or resulting cost factor, in terms of follow-up residences and so on and so forth.
I think Mr Fram indicated earlier that in cases where there was specific legislation governing elder abuse etc, it seemed to result in more institutionalization. I am not sure he is making the same point you are making. What you are basically saying is that if you are going to have advocates going out and finding where there is abuse of various types, you are going to have to have a solution for that. I think the principle of doing that is excellent. It ought to be done and people ought to be protected, but I also think that people have to act responsibly in the process. You and I both know what a budget crunch this government is facing at the present time, yet we have this initiative coming forward, which is going to pass, I take it, with the majority -- it is one of the priorities of this government according to a document released yesterday. I am concerned that expectations are going to be raised, and then this government will not be able to deliver on it. That is one option. Alternatively, expectations will be raised and too much will be expected from the people who are required to deliver the service, because they do not have the resources.
I would like to have assurances from the government, from the three parliamentary assistants who are here, that they will have the resources to implement this legislation to address the concerns you are raising. Because, in addition to the indirect resources such as residences that this legislation will create, we had a letter or a memo produced last week by Mr Ferguson, something from the public trustee, indicating that just the advocacy services would be from $6 million to $48 million, somewhere in that bracket. So I do not know if this government is going to be able to deliver the resources and, second, who it might be leaving high and dry if it goes ahead with this legislation and then cannot deliver on the resources.
I guess I am making a statement more than asking a question. I think you have been working in the field long enough to realize that there have been a lot of good initiatives and good intentions which have not had the resource backup and very frequently it causes more harm than good by doing it in that particular fashion. I just wonder if you feel that you have the assurances that this government has the resources to deliver on this legislation if it were passed this year.
Ms Hubbert: I am not close friends with Bob. I have not had any such reassurances. What I do know is that vulnerable adults have been high and dry for too long. You mention that there has been no cost analysis, and I think that it is the beginning. Before decisions like that are made, we need a cost analysis. When we look at that cost analysis, we need to look at what the cost is of warehousing these people inappropriately, and what the cost is of the kinds of medication and health care they require, that they may not require if they were in a better setting, and what some other ways are of providing service that other countries use. So I think it is very difficult to say that the money is not there when the first step has not been done as far as cost analysis.
My concern is that the government of Ontario should be totally embarrassed. And I am not just talking about this government. I am talking about all past governments, where this silent minority of people have had so little attention and so little concern. Because many of them are totally isolated, have no family members, have no one who speaks up for them, they do not get a lot of the government's attention. I think we really have to look at the moral implications of this whole thing. We also have to look at the cost analysis and other ways of doing it, but I do not think anything should hold up this legislation. I think it is long overdue.
Mr Chiarelli: If this legislation proceeds and the resources are not there, what happens? I understand what you are saying, I agree with what you are saying. I am saying that it is easy to offer and it is easy to initiate, but to deliver on it is another question, and we have no assurances that they can deliver on it.
Ms Hubbert: We have no assurances of anything. What we do know is that we are looking at the long-term care system because of the way we have been doing business. I am not prepared to look at this one small segment without looking at the whole system, to look at how else business can be done, so services can be extended to these people. It seems that the assumption is made that the services we now provide are cost-effective and absolutely required. I think that all has to be looked at, even if that means that as people from Ontario we have to look at what we consider as a right.
Mr Poirier: I am glad I read the details about that fifth recommendation because it says, "Since the involvement of the advocate potentially creates a greater vulnerability" in the sense that what that person may find will evolve from a rights advocacy to a case load. I am kind of shocked to hear that it would take you a year to get the clearance out of the public trustee's office. But from what has been explained to us, I see now that we should not be surprised that the person does not seem to have the resources to be able to do, with all the goodwill that person has.
I am trying to look at this objectively, and what will translate into real life situations. I look at your case loads and how long you have to deal with individuals before the situation is resolved, and then all the monitoring afterwards, to make sure that how you resolved it is always going to be that way a year later on; I mean, you cannot just abandon them. I put it all together and it just reminds me of the former support and custody orders enforcement program in Ottawa, where each case worker had 938 cases of delinquent husbands not wanting to pay child and family support. I mean, I would just love to have a case load like that.
I have a feeling that if it becomes a case-load advocacy, knowing all the needs out there and knowing how long it takes to resolve and monitor to make sure that the resolution is always there a year later -- my God, when I look at your presentation, it boggles the mind as to what is required out there to help that incredibly high number of vulnerable people.
I can imagine being a fly on the wall of the Treasurer's office when he says, "Well, if this is what you want, Mr Treasurer, this is how much you will have to give us." If it is up to $48 million for just the public trustee's office, what is it for the entire program? How do you feel about that? Do you share my fears? What is happening with that deficit?
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Ms Hubbert: Certainly I do, but I think there is something we are forgetting. People who are vulnerable can be trained and educated and they can learn. We have to look at whether we are going to maintain their dependence on us for ever or whether we are going to have to focus on their education. York Support Services Network has an advocacy system we use. The first thing we look at is, what does that individual need: do they just need information and then they can advocate on their own behalf, or does the family need information, so that it is done in stages. Our goal is to give people information and education. Initially we may have to advocate for them or with them, but the goal is that down the road their support, their care givers --
Mr Poirier: That is right, they do not need you.
Ms Hubbert: -- will be able to continue that for themselves. The best thing is to see an issue taken and actually see some result from it to encourage them that they do have a voice and that they can make a difference.
Mrs Cunningham: The York Support Services Network, in my opinion, the little I know about it, is an advocacy group in itself, the work you do. Am I correct?
Ms Hubbert: I would say that.
Mrs Cunningham: I think also that you are well known for the kinds of services you provide for the vulnerable adults you serve. You are out there speaking on their behalf all the time. Right now, today, if you had to take each and every one of them, you would probably know how you could serve each and every one of them in a better way. Am I correct?
Ms Hubbert: Yes.
Mrs Cunningham: I would like to thank you for coming here with that wealth of experience and speaking to what is necessary to accompany this legislation to make anything work. You will not be surprised at all to know that each recommendation requires a lot of resources -- dollars. Every one of them I have a dollar sign on, which I am not objecting to, and every one of them requires more communication either through your staff or with families or with the advocates.
There are a couple of concerns I do have. One is as an elected representative. I am from London North, by the way, and have been involved in the same kinds of things you have in the past. Some days I have to sit back and wish there was less bureaucracy and more front-line workers. That is my great concern about this legislation. We have just been through two pieces of legislation, one particularly, Bill 17, which now has our SCOE office in London backed up even more. That is my great fear with this legislation, not that there is not a need. I think it could be more simple. I do not think three ministries have to be involved. I am surprised you did not say that. I would like your opinion on that.
The other one I would really like you to talk a little bit about is something I am very concerned about. Once you get things into legislation, as opposed to providing the services you already know -- I can tell by looking at all three of you that you know what is necessary -- instead of doing that we are doing this, in my view. I am really concerned about one part that I thought a little bit about. It is recommendation 7, where you talk about liability, because in my work the best advocates I have ever had have been the family members themselves or neighbours or friends or people who really know the people. Maybe in your work you do not have a lot of that, but certainly where I have been involved it has been somebody who has had some personal responsibility in some way, even to deceased parents or to teachers who have been particularly concerned about young adult students they have watched grow. That has been my experience, so I am really concerned about the personal liability part.
I know I have given you a little bit to think about, but I would like a response to what I have just said in some way.
Ms Paul: In terms of the last comment, what I think you are saying, certainly the role of family members and other individuals in advocacy is one that needs to be maintained. We also think there need to be paid advocates. There are lots of people out there who do not have neighbours, who do not have family, who need to have access to somebody who looks after their rights.
Mrs Cunningham: I am not arguing about balance.
Ms Paul: But we are concerned, and maybe it is just the words we use in terms of personal liability. I am not necessarily saying that you are able to sue somebody if they do not do the work for you, but it states in the legislation that the advocates will not be liable. Our interpretation of that is, how are they held accountable for what they are doing? As Penny said in the presentation, if you do not like what is happening, who do you go to if you cannot find someone who makes your advocate accountable? I do not know if that was what your question was about, but we were thinking very specifically about that group of people and how that will be set up to ensure accountability is there.
Mrs Cunningham: No, I am glad you mentioned that your reason for remuneration is that it is at least part of accountability. If you are paying somebody, you can then say they are on the payroll. Through whatever their job description is they are accountable in some way. If that was your point, then that is fine. I respect that.
Ms Paul: In terms of the comment about the involvement of the three ministries, yes, it probably makes it more bureaucratic. We also know, just from our little involvement with trying to understand the legislation, that we are dealing with very complex areas. Our response to that would be, I would rather see that all the issues are covered, and if that involves three ministries, maybe that will make for more coordination at the front-line level, because what happens now is that you have got the Ministry of Health and you have got the Ministry of Community and Social Services, and they do not necessarily always see service delivery the same way, and they do not see what their staff do from the same perspective. You get a lot of roadblocks that way and it can be very bureaucratic in trying to get someone's needs met. Maybe by having all three ministries work together on this legislation we will get something that runs across ministries, that is more coordinated for people so there is less bureaucracy and fewer roadblocks.
Mrs Cunningham: It just has not been my experience. As I look around the room, we have three parliamentary assistants here. We have eight lawyers as opposed to two, and all representing the different ministries. I mean, the bureaucracy is here in this room as we discuss this legislation now. Look, I have not got all the answers either, but --
Ms Paul: I do not either, but from our perspective this is some of the most far-reaching legislation we have seen in our experience, and hopefully not excess involvement of professionals and ministry people will ensure that it is far-reaching and that we are actually looking at creating something that may be a new experience, that is coordinated and allows people better access.
Mrs Cunningham: Would it be fair for me to say that the people you have been working for basically -- I think you said this yourself -- are people who do not have the family support systems we are hearing about when we hear from groups that represent children, like March of Dimes and what not.
Ms Paul: Certainly some of the people we work with do have family support, but we have a large --
Mrs Cunningham: Majority of your people --
Ms Paul: Yes, a large percentage, particularly the people we work with in the homes for special care population, which we consider an incredibly vulnerable group that most legislation seems to skirt around. I thought I would put a plug in.
Mrs Cunningham: I hope we can revisit this down the road and see what happens as a result of it, because if we have not got the resources, we are yet again in Ontario raising expectations, which makes people who are working with these people even more frustrated.
Ms Carter: Thank you for your very constructive presentation. I thought if I addressed the question of the adult protective service workers, that might bring into focus some of the other things we were discussing. If they were transferred to the Advocacy Commission, they would presumably lose the case work part of the job they currently do, which would obviously leave a gap. You are saying that should not happen.
But the adult protective service workers who have been here, some of them think they do have a conflict of interest when they are working with an organization that also provides services, whether it is your group or whether it is the Ministry of Community and Social Services or whatever. I am just wondering whether they might in some way come under the Ministry of Citizenship and yet not be part of the Advocacy Commission, and continue to do the job they are presently doing. The point about having the three ministries involved in this whole question is that Citizenship does not have the direct service relationship to the public that Health and Community and Social Services have. Therefore, by placing the advocates under that heading, we are making it much more possible for them to be really at arm's length and quite free from conflict of interest in the kind of work they may have to do. What is your comment on that?
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Ms Paul: It is more operational, so I will respond to that one. It is a very complex and convoluted issue. Certainly we recognize that in some situations you potentially, in theory, could be in a conflict situation. Our experience, though, has been that it is a tradeoff; you pick up some things and you lose others. We have also been at an advantage many times working very closely with both ministries. We get funding from the Ministry of Community and Social Services and the Ministry of Health. We know those systems well. We have contacts within those systems, and many times we have made those systems work for us. By knowing that system well and having a knowledge of it, we have been able to meet the needs, get a lot of funding for people's needs going through that system.
Part of the difficulty is, and it is an issue of one's experience, a number of the adult protective service workers have been in agencies that have not known what case management is; they are sort of add-ons. Our staff has been fortunate because we are set up to do that. We have a very different perspective on how well you can work within the existing system. If you have a strong system and a strong board, it will basically say, "We receive funding from the ministry, but that does not mean we can't advocate to them when we have a client's needs to deal with." We have taken that stand and we have been very successful with it.
Part of our concern with the Adult Protective Service Association of Ontario is this feeling that everything is going to be resolved if you move over to Citizenship. Our thought was, let's look at what the issues are within the ministry first of all and see if we can resolve some of those operational and conflict issues before you take a whole program and move it over. We just do not think that first step has been done.
Ms Carter: So your big concern there is really to keep their function as it is and not dismember it?
Ms Paul: Yes, that would be our preference. Certainly our staff do social advocacy as a matter of course. We also see a point where we could well be in conflict and we would pull in an advocate from the commission to become involved with that particular situation.
Ms Carter: I see.
Ms Paul: But on a day-to-day basis, a lot of what we do and a lot of what our adult workers do is social advocacy.
Ms Carter: I just have one other point. Of course, the advocates envisioned under Bill 74 have a second function, which is systemic advocacy. In other words, if they find from the clients, the people they are dealing with, that there is some problem out there that is affecting all those people or many of those people, they are empowered to do what they can to correct those problems. That is relevant to what came up earlier in this discussion as to whether this whole thing is going to cost a lot of money, because if we find that problems in society are being dealt with and rectified, then I think we could expect that would not only lead to more happiness, less suffering, but also to less expenditure of public funds. Do you agree with that?
Ms Hubbert: Yes. I would just like to make a comment about the APSW and the conflict of interest. If you want to see conflict of interest, look at an agency like YSSN, which is being funded by the Ministry of Health or the Ministry of Community and Social Services: We often run into situations where our clients are not getting the service and we have to advocate and assist them. I do not think it is a matter of trying to protect people by keeping them out of any situation where there may be conflict of interest; it is a matter of training and education. We are professionals; we recognize when there is a conflict of interest. When that situation occurs, you handle it and you bring someone else in.
Around systemic advocacy and community development of services, this is something else that YSSN does. We get around it by educating and encouraging the consumers to take a lead role in assisting with that kind of initiative. But it gets back to education and training. The whole issue of cost analysis for the government -- not just for this one program but for the government -- and for education and training, whether you are talking about health, community services, whatever, it is key. We are constantly going to be hand-holding people unless we give the necessary importance to the education and information to people.
Ms Paul: Could I just respond quickly to the comment?
The Chair: Quickly.
Ms Paul: One of the concerns we have with the split with the workers is that they are going to be expected to be a rights adviser, a case advocate and a systemic advocate. Our concern is, given the clear direction in terms of a time line for being involved as a rights adviser, we may be wrong but we think there is going to be a lot of need for that. The question will be, will the advocates be able to do the systemic? We are worried that it is going to get sliced off because there is going to be so much demand for the here and now: "I have this issue. It has to be resolved in two weeks or three weeks," whatever. They are going to have all these issues, but the question is not to lose that systemic part of it, because we think that is essential.
Ms Akande: This advocacy system is quite an interesting design. It is really a design that is not supposed to be confrontational; it is supposed to be supportive and protective. It is interesting that you and Mr Woronko before you saw that as its goal.
I was interested in page 4 of your presentation, the bottom paragraph. One of the things you have included in that is that of the people you serve, 70% required advocacy services. I was wondering whether in fact the service coordination agencies that will come out of long-term care and the resultant coordination of services through that system would not in fact take some of that load from you.
I am familiar that currently the APSW workers do a lot of service coordination for the people they serve. It does in fact take a great deal of time also because the agencies and the services are not set up in a neat little package of districts and so you have to go and shop and find and sometimes bang on doors.
When the service coordination agencies move into existence, will that not lift some of that from the work you do?
Ms Hubbert: Right. It will depend on whether the focus of the long-term care is expanded to include other than seniors and people with disabilities, and how soon that happens. Also, we have some concerns around the SCAs because if we are looking at education and giving people training and giving them the encouragement they need to develop themselves, you cannot do this in a very quick manner. It takes time and it takes energy and you have to go at that person's pace. I just do not know whether the SCA -- who knows how it is eventually going to look, given the other responsibilities they are going to have, whether they are going to be able to provide that?
Ms Akande: Currently there are services that are designed to educate the very populations you serve, where that population was included in long-term care. Those services were part of the network the service coordination agency would refer to. Would that not serve part of the need you have just described?
Ms Hubbert: It would. My concern is around when you say "educate," because all of us learn through our own life experiences. A lot of the vulnerable adults and children have not had that opportunity because they have not been able to take those kinds of risks. So when I say "education" I am not referring just to formal education. I am referring to the education you get when you have someone who is supporting you and assists you through those life experiences that you learn from.
Ms Akande: One last, if I may.
The Chair: If it is very short. Mr Malkowski would like a brief question also, and we are over time.
Ms Akande: I am very brief, and you will recall that we have not had much time. I will not pull a tantrum. Thank you.
I want to say very quickly that certainly the educational resources I refer to in relation to the populations you serve would of course use appropriate life experiences as part of their teaching technique. They generally do.
One of the other services you have referred to is making the ministry work for you. I know exactly what you mean by that, and you are indeed effective. One of the things I was responding to is that there too is a job that might well be affected by the service coordination agencies. Am I not correct?
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Ms Paul: The actual advocating with the ministry to get funds?
Ms Akande: The actual knowing where the services are and which door to ring, which buttons to push to get those kinds of things. Would that the LTC was extended to include that population, that could in fact be.
Ms Paul: Certainly it would make sense that they would have that knowledge base and those contacts. I guess our concern is that at this point we have heard very clearly they are targeting long-term care to two populations, and those two populations do not include the populations we work with, at this point. But we hope in the future that resource will be available to people.
Ms Akande: One of the questions in --
The Chair: Ms Akande. One brief question and response from Mr Malkowski.
Mr Malkowski: I wanted to ask Trudy to clarify the term "personal liability," which was raised.
Ms Spinks: The question addressed the presenter's concern regarding section 9, which says that an advocate cannot be sued for actions undertaken within the scope of his or her duties and in good faith. This section also goes on to impose liability on the crown for those actions with respect to advocates who work for the commission. It is not intended that a vulnerable person or someone else who suffered damages does not have recourse; it is simply that advocates will not be totally constrained in what they do by fear of losing their personal assets and so forth, consistent with police officers and human rights officers.
The Chair: Thank you for that clarification, Mr Malkowski. Ms Hirstwood, Ms Hubbert, Ms Paul, on behalf of this committee I would like to thank you very much for coming and giving your presentation.
Ms Hubbert: Thank you very much.
ROBERT WALSH
The Chair: I would like to call forward our next presenter, Mr Bob Walsh. Good afternoon. I would like to remind you that you have half an hour for your presentation. We would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the committee members. As soon as you are comfortable, please identify yourself for the record and then proceed.
Mr Walsh: My name is Robert Walsh. I am a consumer-survivor. I have a thought disorder; I am a schizophrenic. I really appreciate the opportunity to address this gathering and I would like to thank you for the opportunity to share with you concerns in regard to the various acts you have gathered here to confer on, evaluate and assess. It is my prayer that God will give you great insight in these issues because there are many concerns here. I trust that what is done here today will mould and shape our future, for better or worse, for many years to come.
I understand that my opinion may not be a collective voice for the public at large, but I have received overwhelming support for an amendment I petition you to make within the newly proposed laws. Many recipients of mental health services with whom I have had cause to converse have indicated their support for this amendment that we feel we need. This amendment could be the difference between someone getting help and someone falling through the cracks of the system. I am sure by now that you are very familiar with many of the statistics of mental health issues, so I will be very brief here.
Schizophrenia universally is accepted to be manifest in about 1% of the population. It is a very democratic illness, as it is present in every group more or less equally, but the stigma of being mentally ill prevents many from becoming familiar with the facts.
The population of Canada, I have been told, is some 23 million people. That 1% factor then calculates to include 230,000 Canadians; that is nearly a quarter million people. Another factor of real interest is that 10% of all people suffering from schizophrenia will commit suicide; in other words, 23,000 Canadians who are schizophrenic will kill themselves. The facts I am quoting have been confirmed by the Schizophrenia Society of Canada.
Friends, schizophrenia is a real problem within my family. I have had one uncle who killed himself. I am also haunted by the memory of an older brother who took that way out. I also have a sister who has tried this and I have attempted to do this many times myself. But it was never really evident that any one of us would do this. My uncle, when he killed himself, was in a sanitarium. He handed his gloves to his sister, dove out the window and killed himself. I was hospitalized myself in intensive care for a number of days due to a prescription overdose. On another occasion, I was stopped from certain death as I sat in a vacant lot with my car engine running and the exhaust fed back into the car by a hose. The gas gauge was broken and it is only providence really that I did not succeed in my plan. My dear wife is only recently aware of this attempt. Again, I am a sufferer of the disabling thought disorder, schizophrenia, and I am very grateful to have been helped by the mental health community at large. Today I can stand before you because of the many people who have assisted me and the fact that I did not reject their help. I have been hospitalized eight times in the last six years.
When I am functioning well, I am for the most part quite able to make rational decisions about many of the issues life presents me with. I try to avoid stress wherever and however I am able, and in anticipation of stressful events, I, with my doctor's approval, increase the medication I need to stay well. In fact, in preparation for this presentation I am making here today, I have increased my medication by 50% since February 7.
The common denominator throughout each hospitalization is that I am very paranoid. When I initially lose touch with reality, I believe my care givers will and do try to kill me. But when I recover a bit, I realize that most of my paranoid thinking is due to my degenerated thinking. I believe it is only a matter of time, however, before I do reject help.
Each time I am hospitalized it becomes more difficult for me to submit myself to others' care, because they have a different perspective than I do. In order to get the help, I have to rely on their perspective and close my eyes to mine. If I refuse help when I am ill -- I can tell you that now, while I am well -- this is simply not an option, but with a change in perception comes a change in choices and options. It is most irresponsible to overlook this factor of mental health dynamics.
I am asking you to give me a tool that will give me the right when I am well to contract with my care givers I trust when I am well; to administer intervention that I approve when I am well, allowing myself to reject my pending rejection that will inevitably be expressed when my judgement becomes impaired.
Those who would not make such a contract will lose nothing by way of their rights to reject any treatment that can be expressed whether due to poor judgement, fear or irrational thinking.
I believe I have the right to make such a request. Additionally, I believe it is a breach of the Human Rights Code not to allow me this option. The Human Rights Code, 1981, states: "And whereas it is a public policy in Ontario to recognize the dignity and worth of every person and to provide for equal rights and opportunities without discrimination that is contrary to law." I want that equal right and I feel that is my right. This right will not be there unless you allow me to be empowered to make such a contract because I believe inevitably, sooner or later, I will refuse treatment.
The Canadian Human Rights Act states, "Every individual should have an equal opportunity with other individuals to make for himself or herself the life that he or she is able and wishes to have, consistent with his or her duties and obligations as a member of society granted." I would like to highlight the words "duties" and "obligations." I feel I have a duty to myself to look after myself, considering all the circumstances of my present situation.
I have for your consideration a number of signatures to show support for an amendment I propose here today. Almost every person I have approached personally signed to show their support. Further, many of these people are schizophrenic. In fact, I really did not come across anyone who did not show support for such an amendment.
What does such an amendment mean to us? When well, people can contract in advance, rejecting their rejection of treatment in advance. They will get better and that means more people staying well, fewer people killing themselves; more people staying productive and fewer people living on the streets.
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Between 50% and 60% of the people on the streets, I am told, are schizophrenic, and I do not doubt you have heard this already. Perhaps you will hear it again. There can even be a time-limiting instruction in the contract. With more people staying productive, the annual national bill of $2.5 billion due to schizophrenia alone could be turned around. The self-sabotaging barrier of treatment will be broken, and we will keep our minds and hearts and lives.
Such an amendment, I feel, is not only rational, but both realistic and socially responsible. Dear and honourable friends, what you do for me here you will also do for that 1% of your family and their future generations. Not to understand this issue and not to make a provision for this dynamic schizophrenia, I feel, is insanity itself. By making such an amendment you are not removing the rights of others who would oppose this request.
Thank you very much for your time. I will try to answer any questions you might have for me.
The Chair: Thank you very much. Questions and comments, Mr Chiarelli?
Mr Chiarelli: I have a comment and also a question. First of all, from my experience with that particular thought disorder, there is nothing factually incorrect in what you have said today. I will tell you, as a member of this committee, the government will introduce an amendment to accommodate you and people with that particular illness. If they do not, I will, and I will filibuster this legislation as long as I possibly can until an amendment of this type is introduced.
However, I also have a question. You have described a solution, or a possible solution, to help prevent people from killing themselves, which is very common with people with schizophrenia, but do you have any suggestions for this committee about what changes can we make in the legislation for the first-time occurrences?
You are obviously addressing a situation where a person has already had an episode or some type of involvement with the illness, and therefore you want some future prevention. Do you have any suggestion in this legislation for a first-time occurrence, if there is a strong suspicion or a strong opinion on the part of a medical practitioner that someone in an emergency situation is suffering a schizophrenic episode, that they should have the authority to do something under those circumstances?
Mr Walsh: Thank you very much for your comments to support the idea of having a law made to allow some of this that I have communicated. I am sure many people, if this happens, will owe their lives directly to that kind of intervention.
As far as people are concerned who are becoming ill for the first time, I would first of all like to point out that many times, when people first become ill, they are probably more ill than they will ever be again; they might believe that the people here to help them could be Satan himself. Even if you did have an advocate to work on your behalf, the first thing you have to do is accept to have someone do that.
I propose education throughout the system, in high schools, grade schools and things like this where advertisement could be done. Just as you have a will to distribute your property, you should also have a contract that you can make to help protect yourself should that ever happen. It is quite a reasonable thing to deal with your death, but how much more real and reasonable is it to deal with your life?
Traditionally, very few people know what schizophrenia is, and they will not know and they probably will not know about anything that might be able to be placed unless they are educated to do that. What I propose is something in line with the Graham report that was recently made affecting our community, that education should be supported and funded. I think education is really the answer in a lot of these issues with schizophrenia, and I think it might be very difficult to do anything without education.
Mrs Cunningham: Just a comment. First of all, I sincerely thank you for coming before us today and for taking the time to bring not only your points of view but those, obviously, of many of your friends. I am certain that the government in fact will consider this kind of amendment to allow you, certainly, to put your wishes on paper with regard to your future care. I do not think there is anybody in this room who would not consider that a reasonable amendment, and so we look forward to that happening. Perhaps one of the government members, when it is his turn, could respond to what I have just said. If there is a problem with it, I think both you and I would like to know now what that would be. Thank you very much.
Mr Winninger: I too would like to thank you for your presentation. I need to know a couple of things from you. One is, let's say you wrote down that no matter what happened, if you needed the treatment, no matter whether you objected to it at the time, that treatment would still be given to you. How long would that last? Would it last a lifetime? Would it last for six months, 12 months, two years?
Mr Walsh: That is a very good question, and I think that like making the contract when you buy a house, it is, in effect, that you pay the mortgage until the house is paid for. As far as making a will is concerned, that is basically okay until you change it. I think you could look at the possibility, if it had to be agreed, that everyone would say, "Let's limit the time factor of this."
We can be educated to know how frequently we have to recontract. This is something that could be changed to anything from a very short, one-year time, let's say, to a much longer period of time. I think we are looking at something that people can change as they feel they are able to. The thing to look at, however, if we are to make a change, is that we have to be fairly rational to make that change, and I think if we are rational enough to make that change, then we should be able to make that change in any way we wish to make it.
Mr Winninger: I see. A second question: As you know, treatment modalities change, new medicines are created and utilized. Let's say, for example, you signed such a document. I take it it would be in writing, you would state your intention in writing that you would receive treatment, no matter what.
Mr Walsh: Yes.
Mr Winninger: Let's say a new drug came along, let's say clozapine, and it is found to be a kind of miracle drug in most cases. But in 5% of the cases, as one of our earlier presenters indicated, it could possibly have side-effects, it could possibly be life-threatening. How would you deal with that in your original document, where you waive your right to refuse treatment now and for ever?
Mr Walsh: That is a very good observation. The fact is, though, if you recall, I have the risk of developing tardive dyskinesia on the medication I take presently, and I choose to take this medication to allow me to continue to live a somewhat normalized life. Without the medication, I am quite irrational. I could even believe that I am God, and if I am God, then who should I subject myself to? That is the danger for me, but there are risks of side-effects and things like that right now. I make an educated choice to take the neuroleptic medication that I take.
As far as new drugs are concerned, we are talking about a personal and an individual contract. If I wish to try a new drug that might be controversial, then let me do so if it is at my own request. If it is legal to be available to me, then let me do so as I feel I can do that. While I am rational, let me make that contract. If, however, I feel that would be more of a risk than I would like to take, then while my judgement is not impaired, let me also stipulate that I will not take that drug.
Presently, I have a number of drugs that I will not take because of bad experiences with drugs, and that really only comes through time and knowing how things are. I would not take some drugs, for example, that I have heard some negative things about until I could see for myself how effective they could be.
Mr Winninger: So you are not signing a waiver here; there are some drugs that you would not want to be treated with in any case.
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Mr Walsh: Exactly. I think what you have to make sure is that this contract should touch base on those things that any individual might like to deal with. Just as in a will, where you touch base on all your assets, you also have to look at the whole picture when you make such an agreement.
Mr Malkowski: Thank you for your very impressive presentation today. I think it is a very important education that you are providing us. As far as keeping stable by use of your medication is concerned, we have heard of some situations from psychiatric survivors, and they have talked about some of the misdiagnosis and mislabelling that happens with people who are diagnosed schizophrenic. I think the advocate is there to help prevent that kind of misdiagnosis happening. Would you agree that making sure that those people have the right to refuse treatment if they have been diagnosed as schizophrenic would be one of the roles of an advocate in those situations?
Mr Walsh: Again, you have to be looking at the fact that when a person makes this kind of agreement, he is fairly rational, and with proper counselling he will be able to look at the whole picture. I would not say, "Stop buying canned food," because every now and then you buy a can of food that may be tainted, because you have to eat. And I have to live: In order for me to maintain the quality of my life, it is very important that I be free to choose the best things that are available for me as I perceive them while my judgement is not impaired.
Mr Malkowski: I have one more point I would like to clarify, then, related to the psychiatric survivors who have presented to us previously. Some of their experiences have been that they have been misdiagnosed as schizophrenic. Would they have the right to refuse treatment? Would you be supportive of that, of the Advocacy Act, and agree that if there are some people who are misdiagnosed as schizophrenic, they should then be able to refuse treatment?
Mr Walsh: To reply to that, I would like to look back at the Human Rights Code. I think if their decisions are well made and made in reality, or are made before they come to that problem, or even made in error, we also have to recognize everybody's rights.
My perspective of myself is different and, even in myself, the awareness of what is wrong with me is a long kind of journey. If I just look at the system the way it is now, I have to ask, what is happening with these people now? My point is that by allowing me to make a contract like I am describing, I am not taking away anyone's rights, and I feel that is the way it should be, perhaps. There have been some abuses; I understand and I am aware of that, and I am not kicking about that, because I think it is very commendable to try to deal with these things. But I am talking about myself personally, and I feel that other people share my perspective, and that is really why I am here today.
Ms Akande: One of the things that most interests me around the presentation -- and I must admit that I am very interested in what you are requesting -- is that just as you would recommend or sign a paper or designate someone when you were well to take care of you when not well, what if it was required if you decided at some point in the future to change that designation? Would it not require -- I really do not know, and I do not know even if you know -- that someone, a doctor, be assigned to determine whether at the time you wanted to change the designation you were well enough to do so?
Mr Walsh: Yes. I think because of that, one thing you have to look at is that just as a will can be changed when the circumstances change, it is important that this be changed as well. I think the question of having someone who can certify that you are reasonably well to make that change -- you should be able to make that change at any time. However, when you are acutely ill, my concern is that you not simply walk away from treatment because of your perspective, which is distorted while you are ill. I think it would be inappropriate for me to make a change while my perspective has changed, yet if I am still rational and reasonable and I have come to realize a new dynamic within my problem, even new medication, then yes, it is very necessary that this can be changed.
I think that whatever you talk about, when you talk about the Consent to Treatment Act or any of these other advocacy acts and what not, someone really has to make a judgement call in some way to empower someone. That is not a difficult thing to do when you are talking about someone who physically cannot speak and cannot communicate. Someone has to be there to help that individual. But when we are well and rational, we should have the right to control that area by saying: "If I do reject help when I am ill or when my judgement is impaired, then treat me. However, while my judgement is not impaired and I wish to make a change, I need the means to do that as well." I would not suggest that someone live the rest of his or her life based on something they signed one day, and live with it for 80 years.
Ms Akande: No. The point I was making, though, is that there would have to be some judgement made about your ability at the time you wanted to change the designation.
Mr Walsh: I would agree with that, absolutely.
Mr Wessenger: I just have a short question. Would you support the concept that when you entered into such a contract and designated your health care, an advocate should visit you to advise you of your rights?
Mr Walsh: I have no problem with learning about my rights and making sure they are not infringed, but I have to be very specific to answer something like that. If when the advocate comes I am telling him, "I want out of here," and I know my own plan is up to no good, that I am delusional, and that advocate can look at my contract and yet still allow me to be released without treatment, then I have defeated my own goal.
Mr Wessenger: I think my question really relates to the time you are entering into your contract to designate. It has been suggested that when a person enters into a contract, he receive advice at the time, be attended by an advocate.
Mr Walsh: Exactly. It is very effective and very important that that is also there, because the more people who are there to give information, the more educated a choice can be made. We could definitely benefit from being able to talk to someone who is trained to be an advocate, who is aware of certain conditions and certain problems, when we make a contract. I would like to say, though, that it should not be mandatory. It should be a personal choice, perhaps. But I would not turn my back on any information to make any kind of logical or rational decision about my health and staying well.
Mrs Cunningham: This is really a subsequent question, probably, to all that were asked, but I particularly thought of it when David Winninger was asking his question. At some time in your life, you probably have somebody whom you would really trust to help you make decisions. Would you consider that person's name being part of this contract or agreement? Do you think it would be important to put a person's name in this contract as somebody who, at least as far as you are concerned, would always be there even to listen to an advocate or a medical adviser or somebody? Is that something you would want to see happen?
Mr Walsh: I think that should be an option that is available, and an individual can make a personal decision about that. I do not think it should necessarily be a standard kind of thing. I think what is really important is to allow the individual to make the contract. Some people will have someone whom they can trust to understand what they meant by that contract and to ensure that the right of that contract is enforced. In that regard, I think that could be very positive. But I do not know enough about that to really make an effective statement about it.
I trust my wife, I trust my family doctor, and I have always involved them any time I have been ill. But like I say, it becomes more difficult as I become ill to submit myself to treatment, and that is really why I would say have the contract. Those people who are there and whom I trust will be able to do very little if I make a bad decision and refuse treatment. Even those people who are named may not be able to do anything unless there is a contract where they can say: "No, Dr Smith, my husband really wanted to be treated. He agreed to take injection, long-term medication, and he did not agree to take shock treatments. He agreed to take any drug that was working in the system that had been known for greater than three years, but not to take anything that was a brand-new thing." Those are all kind of personal choices.
Mrs Cunningham: So it is the same response you gave Mr Wessenger with regard to his question. The reason I ask is that there have been instances where family members have been -- I have to be careful in my choice of words, but people in agencies have not thought they were working in the best interests, and therefore they go to a different advocate. This is a reality of life some days. Who is to judge? When you are feeling well enough to make decisions with regard to people you trust, I just think it would be important that you say so. But I appreciate your response that it is not something that has to be mandated but is something that should be considered by each individual.
I really admire you for coming here today. You have been very helpful.
Mr Walsh: Thank you very much.
The Chair: Mr Walsh, on behalf of the committee I would like to thank you for taking the time out to come and give us your presentation today.
Mr Walsh: I would like to thank you for allowing me to do so.
The Chair: Seeing no further business before the committee today, we adjourn until 10 am tomorrow morning.
The committee adjourned at 1652.