Assemblée législative de l'Ontario

ADVOCACY ACT, 1991, AND COMPANION LEGISLATION / LOI DE 1991 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT

FREEPORT HOSPITAL HEALTH CARE VILLAGE

INTERNATIONAL FAMILY NETWORK ON ABILITIES

COUNCIL ON AGING -- OTTAWA-CARLETON

ANGELA BROWNE

CITIZENS COMMISSION ON HUMAN RIGHTS

CONTENTS

Friday 21 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

Freeport Hospital Health Care Village

Margaret Ann Munoz, director, nutrition and food services

Dr Peter Naus, member, ethics committee

Ian Wallace, member, ethics committee

International Family Network on Abilities

John Carroll, chair

Council on Aging_Ottawa-Carleton

Germain Aubut, president

Charles Scott, chairman, task force on legal issues

Angela Browne

Citizens Commission on Human Rights

Raymond Mallet, investigator

Nicole Massie-Grellin

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):

Jackson, Cameron (Burlington South/-Sud PC) for Mr Sterling

Ruprecht, Tony (Parkdale L) for Mr Sorbara

Clerk / Greffier: Freedman, Lisa

Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service

The committee met at 0942 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.

FREEPORT HOSPITAL HEALTH CARE VILLAGE

The Chair: I would like to call forward our first presenter, from the Freeport Hospital Health Care Village. Good morning. I remind you that you will be given a half-hour for your presentation. The committee would appreciate it if you keep 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.

Mrs Munoz: My name is Margaret Ann Munoz and I will be making the presentation. With me today are Dr Peter Naus and Rev Ian Wallace, two members of the ethics committee at the Freeport Hospital.

Bills 74, 108 and 109 aim to respect and secure the right of every Ontarian to make informed choices on matters affecting his or her property, personal care and/or medical care. However, service providers at our long-term care facility, Freeport Hospital Health Care Village, are concerned that the specific provisions of this bill may ultimately undermine their intended benefits, and I would like to present some points to the justice committee on that.

First, we would like to recommend that a thorough cost-benefit analysis be undertaken to assess the feasibility and efficiency of the advocacy system proposed in Bills 74, 108 and 109. This should include a comparison of the relative costs and benefits of the proposed system with those of existing systems for advocacy.

The second point is that the important roles of family members, health practitioners and community members in the lives of vulnerable people should be clearly recognized in this bill. I would like to cite an example. It is a personal example, but I was trying to explain to my eight-year-old why I was coming here today. His feelings were that family is really important in decision-making, and this bill does not really include or give recognition to what the rights of families of vulnerable persons are going to be.

I can also cite the example at our hospital where for some of the patients who have been there for a very long time, the staff who care for those patients are those patients' families. They are concerned about the care of the patients and really know them very well, and they would like to be considered in contributing to decisions that are made on behalf of the patient.

Individuals such as family members, practitioners and community members should be given meaningful opportunities to participate in the decision-making process through either the Advocacy Commission or the advisory boards, or they should have the ability to serve as powers of attorney.

Additional provisions will have to be established to look at the professional qualifications and abilities necessary for commission members and Consent and Capacity Review Board members to carry out their various functions. Mechanisms will have to be developed to ensure that commissioners and capacity board members perform their duties appropriately, so some form of accreditation process will have to be established.

Also, training and evaluation procedures for advocates and decision-makers will need to be established. From reading the bill, it is very important that we ensure that the decisions made on behalf of vulnerable persons are as close as possible to the decisions these persons would make for themselves if they were capable.

We need to really understand what these persons would choose for themselves, and that may be very different from what is in their best interests. That may be very difficult for someone to do if he or she is not really aware of how a person thinks, what are important values for that individual. It will be important for the advocacy system to be able to ensure that the choices made on behalf of vulnerable persons choices respect what they would choose for themselves.

Another important area of concern is the expediency and efficiency with which the case advocates and public guardian and trustee offices can respond to individual cases. A lot of times at a hospital such as ours, the crisis situations never arise between 9 and 5, Monday to Friday. Patients will go into crisis in the evening or on the weekends, and it will be very important that the advocacy system be able to respond to those issues and be able to meet the needs of the patient in a timely fashion. The legislation will have to ensure that this system will be available to those individuals on a 24-hour basis.

Individual advocacy and the public guardian and trustee services may be made more cost-effective, less bureaucratic and less cumbersome if they operate on a complaint basis, responding only to grievances from vulnerable persons or from individuals associated with the vulnerable person. This may be an opportunity to look at this in a different manner, if we were to use it for grievance procedures only.

The bill should also use the expertise of institutional advocacy committees to resolve internal cases of consent to treatment or diverse care issues. Ethics committees exist in most hospitals, and there are usually advocacy protocols in place that can help resolve internal cases.

The process for legally arranging guardianship should be less complex than it is at the moment, to ensure that care givers can appropriately observe formal rather than informal guardianship arrangements. Quite often we will have situations where we know who has the informal guardianship and who is the informal decision-maker in a facility, but because of the cost of legalizing that, some families choose not to actually take the time and money to formalize that arrangement.

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Also, our ethics committee felt there needed to be some more clear definitions given to some of the important terms that are used in Bills 74, 108 and 109. These include the terms for autonomy. The question in autonomy is, are we only meaning personal autonomy or are we also meaning autonomy as it relates to community autonomy and how that individual responds within the community in which he exists?

Also, the definition of "vulnerable person" needs to be very clearly defined in order to know which people are actually eligible to be covered under these bills. "Partners" is another word that needs a more clear definition as to who is considered to be the partner or in partnership with this vulnerable person.

Another term that needs to be more clearly defined is "treatment." Again, I would like to cite an example for you. We had a patient in the hospital who was getting palliative care, and because of her ethnic background, there were some religious ceremonies she wanted to be involved with as part of this palliative care. This involved rubbing cream on this person's body. The difficulty with that was that this was contraindicated. The person had very bad sores on her body and the question was, were these creams treatment or were they not treatment? That became difficult. Was it personal care or was it a treatment that was going to help the person? It is very difficult to define. Is this care or is this treatment, and what is the outcome expected of this for the individual involved? The outcome for her was to be more at peace with her death and to be able to have completed all the requirements in her religion to be at peace with herself. So for her it was treatment. For someone else it may not have been considered treatment, it may only have been considered as some form of care.

It is also important that we better define the term "capacity."

The reason we felt those particular words needed better definition was to avoid misinterpretation and the unnecessary use of advocates in cases which could reasonably be handled in a more informal manner. So by more clearly defining the terms, we will be able to utilize the legislation in a more effective manner.

Guidelines for managing and resolving situations in dispute between incapable adults, substitute decision-makers and health care providers should be clarified in terms of their prospective roles, functions and authorities as they relate to treatment and care decisions.

Also, Bills 108 and 109 need to give clear and comprehensive provision for the recognition of both living wills and advance directives, and these should delineate acceptable formats in these documents. In long-term care facilities, quite often decisions are made as to what the patient wants in the future, knowing his or her health may be declining. It is important that the decisions that are made are recognized and can be followed through.

The provisions of Bills 108 and 109 restricting the participation of incapable people in research should be re-evaluated to determine the potentially serious impact of these provisions on health care and on the quality of life for persons with incapacitating conditions. Specific areas of research in which proxy consent by a substitute decision-maker is acceptable because of the low risks and high benefits to participants should be distinguished from areas of research where such proxy decisions should not be allowed. The concern in this realm is that there may be a lot of diseases -- dementia and Alzheimer's disease are two that come to mind -- where there may be some good that could come from research into those health problems. The provisions in this bill which would prevent including incapable people in research may actually prevent us from learning more about how to care for these patients.

It is important that we recognize the ability of hospital and ethics committees to ensure that researchers adhere to legal and ethical guidelines. There may need to be established a peer review system for facilities engaged in research to ensure that the appropriate mechanisms are in place to protect the rights of incapable persons as research participants.

All hospitals have ethics committees, and hospitals which are involved in research are usually involved with a university. Again, their ethics committees and research committees can review the protocols and the proposals for research to ensure standards are being met.

I would like to open the floor for questions.

Ms Carter: Thank you for your constructive and thoughtful comments. I just want to deal with what impinges on Bill 74. I feel that what you are suggesting is really in the spirit the bill is meant to be in, if I can put it that way.

Of course, most vulnerable people do have support from family, friends and medical practitioners, and normally that is adequate. The bill is specifically concerned with the people who for some reason fall between the cracks, who may have no family or who are isolated in some way, and of course in some cases there can be abuse. There can be families who are imposing things on a person that are contrary to that person's own wishes. So do you not feel we really need to have advocates to cover that kind of situation?

Mrs Munoz: I agree with the intent. When we looked at the bill, though, we were concerned that the role of family members and health practitioners and community members is not well defined. At present, the bill does not say what those people can do, so the discussion at our ethics committee was that if it does not say what they can do, maybe they cannot do anything.

Ms Carter: I think that is a misunderstanding, because we are assuming and hoping that they will continue to do everything they have been doing. We are just looking at the points where that is not sufficient, where the person is not otherwise accounted for.

Of course, the whole concept of advocacy is that the advocate will listen to these people and carry out their wishes. There is no suggestion of the advocate going in and telling people what is in their best interests, what is good for them; that is not envisaged as being the function at all. The function is to say: "Well, I understand you have some problems. Would you like to tell me what they are?" and to take it from there.

Where we already have advocates in the psychiatric institutions in this province, I believe those advocates are able to respond quite quickly, and hopefully that would be the case in the wider application. On some occasions they can in fact alert a family who may care about that person but are not geographically close or do not necessarily know what is going on inside an institution. I think that is the kind of way it would work: sometimes to augment what a family can do and sometimes because that help just is not there.

Mr Wallace: I think one can make an assumption, from the way the legislation is currently worded. This may be an off-the-wall example: an advocate walking off the street into a facility such as ours and randomly checking on who might need the services of an advocate and who might not; in other words, stepping into a situation where there might be no need for advocacy, no complaints having been lodged, and really upsetting a system that may be working fine at this point.

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Ms Carter: I do not think that is going to happen. I do not think there will be that many advocates on the ground. The law permits and allows them to go into premises, if they have some reason to believe that there is somebody there who needs advocacy, and have the right to talk to that person privately. Of course, if that person says he or she does not want to speak to them, then that is the end of it and they leave.

Mr Wallace: Certainly we support the direction of spelling out more specifically the role of health care providers and family members. The community of those individuals would be added.

Ms Carter: I see. There is no intention to diminish that; in fact, hopefully to enhance it.

Dr Naus: I would like to respond briefly to the suggestion that the intention clearly is to have advocates make decisions that reflect what the vulnerable person himself would have done had he been capable.

That intention, however, it seems to me, is the ultimate criterion in terms of which you evaluate pretty much everything in this particular bill and in the other two. I worry whether that is sufficiently spelled out. I had difficulty finding any particular spot in any of the three pieces of legislation that stated very clearly that an advocate or a substitute decision-maker had to do whatever was possible to figure out what the person himself would have done had he been capable. Nowhere is that spelled out very clearly except, I believe, in one of the provisions of Bill 108; but I think that gets lost.

Ms Carter: No, advocates definitely do not make decisions. That is spelled out in Bill 74. If somebody is not capable of expressing his wishes, then as far as this bill goes that person would not have the service of an advocate.

Dr Naus: Then my comment applies with equal force to Bill 108 and Bill 109. Given the importance of this particular criterion, I think it should have been spelled out much more clearly. It is also with regard to the criterion that family members and health professionals who know the person well are important. If I am in the position of a substitute decision-maker and I have to try to figure out not what I think the person's best interests are, which is something we have to get away from, but rather what that person would have done if he or she had been capable, I have to have detailed knowledge about that person. If I as a substitute decision-maker do not have it from the outside, so to speak, I have to get that information from family and health professionals.

One more point: Considering whether or not this criterion had been given enough attention made me a little nervous. When you look at the suggestion around research, if we understand it correctly, vulnerable persons ought not to be allowed to participate in research. How can we know that if the vulnerable person had been capable of making the decision, he or she would not have decided to participate in research? It would seem to me that somebody was making a decision in the so-called best interests of the person.

Mr Wessenger: Thank you for your very thoughtful presentation. I would just like to sort of dwell on two areas you have raised. First of all, I would suggest to you that actually this legislation does recognize, in effect, the living will, because powers of attorney for personal care may be acted on even if they are not validated. That is under subsection 16(2) of Bill 109, so we certainly have that provision in the legislation and I think it is very important we do that. I certainly appreciate your concern that the autonomy of patients be recognized.

Second, I would like to assure you that there is no intention in the existing legislation to change in any way the existing law with respect to the question of research. If there is any clarification needed with respect to Bill 109, certainly this committee will be looking at making that necessary clarification.

Mr Winninger: You raised the issue of whether Bill 108 squarely addresses the need for the attorney for personal care or the guardian for personal care to reflect as accurately as possible in his or her decision-making the wishes of the vulnerable person.

I would ask that you perhaps revisit section 63 of Bill 108, which sets out very specifically what the duties of the guardian and attorneys for personal care are, in particular subsection (3), which says:

"The guardian shall make decisions on the person's behalf in accordance with the following principles."

Not only does it address the wishes a person expressed orally or in writing, but any instructions contained in a power of attorney for personal care: "The guardian shall use reasonable diligence in ascertaining whether there are such instructions or wishes," and deals with situations of inconsistency or no instructions or wishes.

If you can come up with a proposal that might spell things out even more clearly, I am sure we would take a look at it with deep interest. In the meantime, I suggest to you that section 63 goes further than we have seen in other legislation with regard to ensuring that the vulnerable person's wishes are authentically carried out.

Dr Naus: My concern was not that it was not going further. This is what my concern was: First of all, certainly philosophically, I was very much in favour of what this legislation tried to do and I was very much in favour indeed of shifting from acting in the best interests to acting in accordance with the wishes of the person, but that is exactly why I became very -- I tried to scrutinize whether or not this was indeed done to the fullest. I was very well aware of section 63, but I was still not totally satisfied. I will look at it again and if maybe I feel I need to try another formulation, I will do that and send it on to you.

Mr J. Wilson: A number of the other points you raise have been raised before, so I will try not to ask redundant questions. But I am struck that your number one recommendation, or at least in the executive summary, is that a cost-benefit analysis should be conducted.

It strikes me, as Health critic, and my colleague Cam Jackson, who is the advocate for seniors and social services -- we spend almost every day, and this afternoon we are meeting with four institutions discussing exactly this -- that as a hospital and as a health centre you are required to do cost-benefit analyses all the time. You have increasing pressure from the Ministry of Health to do more in future to justify in many cases the existence of the services you provide. Do you see a double standard here that the government would take an approach to setting up a new system with no discussion of the cost? When you ask the groups that are in favour of this, the principle is so important that the cost does not matter, which leads me to believe we will set up some sort of half-assed system that probably will not work very well anyway and certainly will not meet the expectations of the groups that are pushing for it. That is a rather biased comment, but do you have any comment to add to that?

Mr Wallace: I think the difficulty here is that the cost in this is really unknown. In this day and age our facility, like every other facility, is struggling to keep costs in line and run as efficiently as possible, so there are some fears around this: What is this going to cost, given this day and age of budget restraints and cutting back in services that we consider very important?

Dr Naus: The emphasis and the suggestion should be placed as much on the analysis of benefit as on the analysis of cost; that is, the comment should not be understood only as a concern about the cost analysis but also as a concern about having some sort of mechanism to evaluate whether the objectives one has in mind are indeed fulfilled. That is so important, given the fact that this is fairly radical legislation.

The Chair: On behalf of this committee I thank you for taking the time out this morning and giving us your presentation.

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INTERNATIONAL FAMILY NETWORK ON ABILITIES

The Chair: I call forward our next presenter, from the Families and Friends of the Handicapped.

I just remind you that will be given a half-hour for your presentation. The committee would appreciate if you would keep 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.

Mr Carroll: My name is John Carroll. I am from Thunder Bay. I am the chair of the Families and Friends of the Handicapped or, if you look at our brief, the International Family Network on Abilities.

First of all, to make a clarification and avoid any confusion, the reason this has come about is that we formed a family-based network in 1985. It was originally called the Families and Friends of the Handicapped, but recently there has been some feeling of consensus or movement within our network that maybe the name has outgrown its usefulness for a number of purposes.

One thing is that some people are not feeling comfortable with the word "handicapped." We wanted to choose a name that reflects more the strengths and special abilities of our family members and the people involved in our network, the abilities that allow us to realize the goals we set, not because of the system but in spite of the system. That is just a clarification on the name.

When we originally formed, the purpose -- we have been sort of true to that vocation from the beginning -- was to address medical treatment, medical care and medical issues. That involved not only active medical treatment specifically of disabled or vulnerable people but also subsidiary issues like matters of physiotherapy, occupational therapy and the issue of public undressing, which is a major issue in our lives, the issue of using subjects for information or teaching purposes in teaching hospitals -- all those types of issues that relate to medical care and treatment. We still consider the major function of our network to address those issues, although lately the whole matter of education has become very important to us and all the other issues that spin off that.

I am here alone today, although I represent a network, and the reason for that is that shortly after talking to Ms Freedman my own daughter had to undergo a medical emergency. She had neurosurgery 10 days ago. As soon as I leave here I have to go back and talk to a neurosurgeon and we have to make decisions, because she is scheduled for emergency neurosurgery today and for further surgery in another 10 days. I think we have a pretty good grasp on what we speak of.

Basically, before talking specifically to these bills, I want to mention that we have a deep concern. We wonder why all the emphasis is on this proposed legislation when the real needs of disabled and vulnerable people in this province are not really addressed in this legislation.

We have a crisis out there. It is a crisis that has been growing and building over the past two years, especially over the past year. It is creating despair. It is bankrupting people. We have needs that are not being met and yet we are talking about creating comprehensive legislation that is supposed to deal with people who are falling through the cracks. We feel very strongly that existing common law, the existing Criminal Code, the existing medical ethics and principles very adequately deal with those. In the meantime there are not only people falling through cracks, there are people falling down chasms and standing at the edge of the precipice.

We have issues that have to be dealt with. We are talking about substitute decision-making and making medical decisions. In this province we do not even have the right to see our own medical files, never mind the medical files of our children. We do not have that right. When my daughter, two weeks ago, was sent off to surgery and the medical file went with her, it was wrapped with scotch tape and masking tape, so we do not even have those rights. I think we should address the things that really touch our day-to-day living.

To get into Bill 74, the Advocacy Act, we accept and we recognize that, in principle, there is merit in this type of legislation, in the idea of advocacy, but as it is written, we have a number of concerns. As a family-based network, they would basically fall into the area of where the family comes into that. We feel that the bill is more effective in establishing the powers and the rights of the advocate than in protecting or establishing the rights of the vulnerable person. We also feel very strongly that Bill 74 as written has a tendency not only to usurp or undermine the role of the family but to come between that very special relationship that exists among family members.

We hold very strongly that in those types of situations we know our family members best; we love our family members best. We understand what they need. We understand their hopes and their dreams, and I think we are in a better position to express those.

We also have another concern about this whole creation of another systematic level of bureaucracy that is going to place more obstacles and create mazes in our lives.

I am not prepared to say that the Advocacy Act should just be discarded. I would recommend to the committee that I do not think Bill 74 should proceed as a piece of companion legislation to Bill 108 and Bill 109. I think the ramifications are so significant that to wrap it up in an omnibus bill type of package really does not do justice to the people and the organizations that may have an interest in or that may be seriously affected by the legislation. It should be broken apart. It should be studied at another time by a committee so that detailed submissions to that bill can come forward, rather than having it just part of one big parcel.

In direct relation to the Substitute Decisions Act, we consider it to be an alarming proposal. We consider it to be a chilling proposal. We think that mechanically, the way it is written, it is fundamentally flawed. It is an invitation to open up a whole maze of legal tangle and court challenges. We go right back to our first and original position that the situation we find ourselves in right now is that we see doors being slammed shut. There is a growing apprehension among the disabled community. We cannot even access the medical treatment, care and services that exist today on an equitable level. I think there is a real, growing sense of apprehension there of the whole intent behind Bill 108.

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I just want to bring your attention to page 4 of my brief, because it has been said much more eloquently and much more truly than I could ever say. This is a letter written by Carol Gill, who is a psychologist, and she wrote it in The Disability Rag, which is a major disability publication. I am just going to run through it, because we feel it is very important, and it is the basis of our premise. She says:

"What can be more crucial for disabled people to address than the growing numbers of us succumbing to society's encouragement to die?

"I agree with Ed Roberts that society is killing disabled people and then acting like it's doing us a favour. The corollary is that society offers us only one choice and then acts like it has defended our personal autonomy. In truth, our right to choose life over death is snuffed by society's unwillingness to fund attendant services, access to technology and non-discriminatory suicide prevention.

"When I first plunged into this issue because of Elizabeth Bouvia seven years ago, I was often asked if, in my judgement as a psychologist, I felt right-to-die rulings would influence more disabled people to choose death. I remember how many people disagreed with me when I said such cases would establish a climate in which more and more severely disabled people would be pressured to give up. Now it's happening.

"It's time to pull out of our denial. Our great and good benefactors are not protecting our welfare, our privacy, our dignity, our freedom of choice or anything other than our despair. Those of us with severe disabilities who need human and technological assistance -- yes, who need other people's money -- are already on death row. What a fix! We're too broken and confused to appeal the execution, and society won't even provide funds for an aide to feed us our last meal. On second thought, I bet they would scrape up the money for that."

If you go to page 5, there is just another little thing I want to cover specifically. The organization that I represent today joins its voice with the Association for Persons with Severe Handicaps, TASH, the Association for Retarded Citizens, ARC, and the United Handicapped Federation, UHF, among others, that recently passed a resolution opposing "the approaches now taken...which authorize third parties to decide on behalf of an incapacitated person that it would be in the best interests of that person to die rather than live with a disability."

One of our major concerns -- it is dealt with on page 5 and into page 6 -- is that Bills 108 and 109 allow for the denial of nutrition as a form of medical treatment. We are adamant that nutrition is not a form of medical treatment. It is a basic human right; it is a means of providing the body with nutrition. The reason we say this is that we know that within our organization there are many people for whom nasogastric feeding is a daily routine. It is an everyday part of life, it is the way some people have to eat, and our concern is, if that can be defined as a medical treatment, then what about our catheters, our shunts, our suctioning tubes? Physically, they are the same as a nasogastric feeding tube; they are plastic tubes. Can they be defined as medical treatment and taken away from us?

That has a direct impact on a number of things, because right now, within the educational system, there is a whole debate centring on the area of catheterization, a little plastic tube. Is that a medical procedure, which some people hold it is, that requires nurses to come into the school, or is it, as we contend, merely a normal part of the child's toileting, even though he toilets in a different manner from other people? We hold that nasogastric feeding is the same.

If you look at institutions, even provincial institutions, nasogastric feeding is common, not because it is medically necessary but because it is easier, it is cheaper, it is faster to feed patients that way, and the alternative is to spoonfeed. Does spoonfeeding then become a form of medical treatment?

We have deep concerns about those issues. We do not feel that they have been specifically or adequately debated surrounding this legislation. We do not feel that consent is directed towards specific acts in the legislation.

A good example of that is that we know a number of mainly young and healthy people who have suffered disabling spinal cord injuries. They have become paraplegics or quadriplegics. There are exceptions, but almost overwhelmingly the universal reaction at that point and in the hours, the days, the weeks and the months following is that they want to die. They do not want to go on. They cannot visualize living in that situation. Maybe that says a lot about our attitude towards the disabled. Often in that situation, they do brush against death. Very often they have to go on respiratory devices to keep them alive. Yet we know once they get past all that, they are going to get into places like Lyndhurst; they are going to be rehabilitated; life is going to be good. They can do all the things they have always done.

Our two main problems, specifically with Bill 109, are again because of our roots as a family network. We feel Bill 109 undermines the role of the family and comes between the special relationship of family members. Right now, if a person is deemed to lack capacity for informed consent for medical treatment, the current practice is that the physician will go to family members as defined and laid out in the Public Hospitals Act regulations. If those family members are not available, then there is an application made to the district court for a committee of the person.

Our position has been that the declaration of incapacity has always traditionally been the role of the judiciary. We do not feel comfortable that the safeguards built into that system, which has served us well for 100 years, can just be discarded and we can fly on the wings of this type of legislation. We do not feel comfortable with that.

Interestingly enough, to confirm my worst fears, if a person is incapacitated, Bill 109 lists those who may make a decision on his or her behalf. If you will note, they take the same order of sequence from the Public Health Act regulations. The only difference in Bill 109 is that they are given the last priority rather than the first priority. Even if a power of attorney has not been validated, the family can still be supplanted and placed last.

Our major dissension with Bill 109 is that under this bill there are no safeguards, no provisions to ensure that treatment decisions will not be based on non-medical criteria such as quality-of-life or socioeconomic factors. We do not feel that is an unreasonable or unfounded fear, because we know full well those types of decisions are being made now on quality-of-life and socioeconomic factors. We are adamant in our position that perceived quality of life not be the determining factor in whether medical treatment is granted or withheld.

To sum up briefly, our recommendation is take Bill 74, break it away from its companion pieces of legislation and study it as an individual piece of legislation. We submit that Bills 108 and 109 are fundamentally flawed, that they pose a perilous threat to the life, security and wellbeing of disabled and vulnerable persons, and we would ask that they be immediately withdrawn. Thank you.

The Vice-Chair: Thank you. Each caucus has approximately three minutes. Mr Poirier.

Mr Poirier: Thank you for coming forward. I can see where you are coming from. I respect that. I have no problems with that. It is just that this week there was a document leaked to the opposition that said the passage of these bills is the government's number eight priority out of a very long list. The justification for that, it is said, is because the government has to honour its commitment to the disabled community.

Some people say there has been a lot of consultation, and when I look at the criticism you and your group make of this, you are quite correct. It makes one wonder. I have no doubt they consulted, but if I were a government member and I was listening to you this morning and I saw this, the justification for your criticism, I would want to put on the brakes and say, "What the hell are we doing?" We have good intentions of course but sometimes the intentions -- I do not know. This is a very severe criticism when people feel this way about a bill, no matter what the bill is, no matter who is making the criticism, no matter who is in government.

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Like I said, we in the opposition want to make sure that some bills are going to come forward. We are not obstructionists. We want to support the principle of it like you do also, but in the details there is something really flawed, according to you and many others. Your vision of this is definitely, wow, strong. It is very strong.

While I was trying to listen to you I was also trying to look through this here. I was looking for some specific points you might want to improve on, but when I really listen to what you say and I look at your bill, "just open the window and chuck it out and start all over again" is more like what you feel.

Mr Carroll: Exactly.

Mr Poirier: I can only encourage the government members to get together with you and your group and other groups who feel this way and look at that again and say, "With all our good intentions, is what we want to do really going to please" -- if you in your group are not one of the people right on the front line of disability, who the hell is? I am concerned when I hear people like you and your organization say "Just chuck it out the window." Is this the result of consultation?

I am glad you brought it forward. It is sad when some people come forward -- I am sure you are not very happy about coming here today and saying "Chuck it out the window." I am sure that is not what you wanted and that is not what you thought this was going to do for you and your family and your friends and the whole community. I am sure this is not what you expected. Correct me if I am wrong, but you were very clear this morning. It also puts a brake on me as to how often -- do we do a maypole dance to celebrate this or what? I just wanted to make that comment. I am glad you brought it forward. I will stop here.

Mr J. Wilson: Mr Carroll, I do appreciate a number of the concerns you have brought forward. In the brief time I had, though, I have not had time to fully absorb your thoughts on page 8 and to the end of your brief, which is the second point regarding Bill 109 which would sanction non-treatment decisions based on non-medical criteria. As Health critic I am familiar with some of the arguments here but can you in a minute or less in layman's terms tell me how the bill would do that?

Mr Carroll: The bill would do it specifically because, first, it creates an atmosphere that leads up to that type of decision-making, and second, it does not specifically say that medical decisions will be made on medical grounds, not on non-medical grounds, such as the ones I have listed there. What it effectively does is if we are in a situation where a medical decision or recommendation comes about that is based not on medical grounds but we feel there is a real matter of rights and autonomy being in question here, the way it is right now there are provisions. There is a mechanism you can go to and you can instigate proceedings that can either challenge that or can trigger a mechanism that will protect the rights of the individual.

The fear is that when you have legislation like Bill 109 all of a sudden there is a superseding piece of legislation that does not explicitly say that those types of things cannot occur and so your right to dispute it is therefore negated and neutralized.

Mr J. Wilson: I understand your concern. I am not convinced at this point that is what the bill would do. Though I am not a big fan of the bill, in this particular area I will have to think about it a little more and perhaps the parliamentary assistants will want to make some comments when it is their turn.

Mr Malkowski: Thank you for your presentation. There is something I would like to clarify. On page 3, the first paragraph, I would like to quote a couple of your lines. You say, "It is capable of stripping any semblance of autonomy that a vulnerable person may have." Could you show me where it would say that in the Advocacy Act? I feel that is in total opposition to what we are talking about.

Mr Carroll: I am sorry, I do not have the act in front of me. But I think in referring to the whole spirit of the act, it does that because the act, in my opinion, places more emphasis on creating decision-making powers for the advocate rather than leading to autonomy for the individual. Again, I go back to my position that the principle of advocacy has merit, and our position is that Bill 74 should be looked at separately rather than carried in an omnibus package.

Mr Malkowski: Then you would agree that the Advocacy Act would perhaps help to give the vulnerable person the power to make decisions and perhaps help those people who do not have family or relatives. Do you agree that the Advocacy Act would help that group?

Mr Carroll: I agree that the spirit contained within the act could do that. I think it needs some improvement. It needs more time to be looked at and talked about and improved, but I think the spirit could do that and it may very well be a positive thing.

The Chair: Mr Carroll, on behalf of this committee I would like to thank you for taking the time out for your presentation.

I will call forward our next presenter. I would just like to tell the committee that there has been some concern about the time allotment to each caucus, so we will be more rigid on the time allotment now.

Mr Winninger: On a point of order, Mr Chair: I do not believe that our side had equal time with the opposition parties in that particular question period and I think it is quite obvious, given the amount of time Mr Poirier spent, the amount of time Mr Wilson spent and the short time Mr Malkowski spent, that this time should be more evenly allotted between the parties.

Mr Morrow: As I was the acting Chair at the time, I will answer that. I informed each caucus that it had three minutes. I stood to a strict guideline, and I am sure Mr Poirier will note that after three minutes had elapsed I moved to Mr Wilson. Mr Wilson took three minutes, and I watched the clock with Mr Malkowski and he took exactly three minutes.

Mr Ruprecht: I do not think we should be too tough on the Chair. It will all come out in the wash at the end of the day.

Mr Winninger: Thank you for your comment. I just wanted to make sure the clothes came out clean.

The Chair: As I was saying, there has been concern about the time allotment, and there is equal time allotted to each caucus.

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COUNCIL ON AGING -- OTTAWA-CARLETON

The Chair: Good morning. I just remind you that you will be given a half-hour for your presentation. The committee would appreciate it if you would keep your comments 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.

Mr Aubut: Thank you very much. I was a bit concerned about the time. I thought this time being used now was being deducted from ours.

My name is Germain Aubut. I am from the Council on Aging -- Ottawa-Carleton, and I am assisted by Charles Scott, who will be making the presentation. We are very pleased to have this opportunity to present our brief to your committee.

Our brief was submitted to you in September 1991 and was developed by a task force chaired by Mr Scott here. The task force was composed of members of the Council on Aging, the Social Planning Council of Ottawa-Carleton, as well as representatives from service-providing agencies and individuals interested in advocacy issues.

The Council on Aging -- Ottawa-Carleton has a membership of 39 persons and is equally divided between seniors, specialists in the field of aging and community agencies providing services to seniors. Our objective in life is to provide planning and coordination of services to seniors in the Ottawa-Carleton area. Our council seeks to enhance the quality of life for all seniors, whatever their religion and cultural and ethnic background so that they may have an equal opportunity to achieve full potential and to contribute to their wider community.

Concerns affecting aging are dealt with by us through various committees including community support, health issues, economics of aging, recreation and leisure, affaires francophones and multicultural issues. The council, incidentally, is funded by the Ministry of Community and Social Services, the United Way of Ottawa-Carleton, the city of Ottawa and the regional municipality of Ottawa-Carleton. With this, I would like to introduce Mr Scott to make the presentation.

Mr Scott: Mr Chairman, the Council on Aging commends the government for introducing these bills, as it also commends the member who introduced two initial bills. We believe these represent considerable improvement over existing law and make legal provision for a number of situations where a law has been lacking or unclear. We are pleased the bills provide a legal framework to ensure respect for the wishes of individuals, particularly regarding personal care as expressed when capable.

Although the bills are of general application, we believe seniors will be a very important segment of the population who will benefit from them.

We also believe that some of the provisions are unnecessarily complicated, intrusive, even restrictive and costly. We recognize the desirability of safeguards, but we are concerned that normal family relationships and support be not imperilled. As M. Aubut has said, we welcome the opportunity to come before you.

Dealing first with the Advocacy Act, we started our study with the report by Father O'Sullivan, You've Got a Friend, which recommended shared advocacy, a sharing of responsibility among government, volunteers and community groups. He stressed the need for community involvement, a team approach of full-time advocates working with volunteers. He recommended an Advocacy Commission, which of course is coming in the bill before you, and he also recommended the establishment of regional offices managed by community-elected boards of directors. The shared advocacy model was to be an evolutionary, slow-growth model which might take several years of gestation.

We would like to see that, from the beginning of the program, it would be more closely aligned with that recommended by Father O'Sullivan. Our concern is that if at the outset the advocacy system is centralized and institutionalized, it may remain cast in that mode.

With Father O'Sullivan we believe that an effective advocacy model must be responsive to local needs and resources and must be capable of coordinating and strengthening advocacy initiatives of volunteers. We agree with the Father that the legislation itself should deal not only with the duties and responsibilities of the Advocacy Commission but also the duties and responsibilities of the regional boards of directors.

We feel that in the development of standards and procedures for the implementation of the program, the training and recruitment of advocates and the drafting of regulations, the regional boards may serve as an invaluable resource as a basis for community consultation. Because of the composition and nature of operation of our Council on Aging, as described by M. Aubut, its experience and the experience of our members in advocacy, we believe strongly in lay input. We see the need from the beginning for advocates to be responsive to the regional board. We regard this as particularly important in eastern Ontario, having regard to our cultural and linguistic composition.

Having noted the duties which have been cast upon the advocates, particularly in the Substitute Decisions Act and the Consent to Treatment Act, as well as for systemic advocacy under the Advocacy Act, it is clear to us that volunteers will be required as front-line advocates to develop a personal relationship with the neglected and abandoned, many of whom will be seniors. We are concerned that with their other responsibilities, the advocacy coordinators and the paid, full-time advocates may not have the time to develop a personal relationship which will make them the compassionate, helping hands for the neglected and abandoned. Therefore, we feel that the position of the volunteers should be more fully recognized in the legislation.

We believe that advocates and those involved must be explicitly cautioned against opposing inappropriate standards, and we feel that the local lay input will assist in mitigating any such tendency.

Our last comment regarding this bill concerns the membership of the Advocacy Commission. A majority of its members are to be persons who have or have had a disability, illness or infirmity. We think it unlikely that any of the frail elderly would be able to act as members of this commission, and if so, they would not be represented on that majority while, as we see it, such persons would form an important group of clients.

Of the eight persons to sit on the appointments advisory committee, six are to represent organizations representing persons with disabilities. Only one is to be a seniors' representative. We consider that the membership in the appointments advisory committee should have more flexibility, and membership on the Advocacy Commission majority should be open to members of the families of vulnerable persons.

Let me turn to the Substitute Decisions Act. We have concentrated on those parts of the bill which deal with powers of attorney for personal care because they are an innovation in the law and they are of particular concern to seniors.

Legal recognition that one may delegate to another the right to make decisions concerning one's personal care will regularize and make legal in statutory form what has been happening in the real world. This power confirms, strengthens and extends the acknowledged right of a competent person to control his or her body. Just as that right is fully, legally recognized -- judgements of our courts of appeal, the Supreme Court of Canada -- we believe that the full legal recognition should be given to the right of a person, if so minded, to determine who may assist in or make such decisions for one. We believe the right should be exercisable with minimum red tape, delay, cost and stress to all concerned. We feel the giver of the power is the wisest person as to what other person is most likely to follow his or her wishes and to make decisions most in keeping with one's wishes and beliefs.

We cannot support the requirement that a power of attorney of personal care is not effective until it is validated under section 49, nor can we support the validation procedure required by that section. These provisions we regard as an unwarranted restriction on the right of a person to decide who will make decisions for him or her. The need to go through the bureaucratic procedures in section 49 and following, fulfil the ongoing requirements and the costs incidental thereto, may well deter chosen attorneys from taking up the responsibility which the donor of the power sought to give them. Such deterrence may result in frustration of the hopes and desires of the donor when he or she is beyond making new arrangements. Procedure for proxy for health care should be kept as simple as possible.

We are concerned also with seniors. Often deterioration is a gradual process. The senior may be legally capable and yet the helper assumes greater and greater responsibility. Hence, the effectiveness of the power of attorney should not be restricted until there is incapacity, always subject to the express provisions in the document itself. Persons may go in and out of lucidity. There may well be crises of limited duration when there is incapacity. The bill seems to not recognize these situations. It seems to operate on a black-and-white basis, that once you cross the line, there it is.

We recognize the need for safeguards and standards, and there are provisions in that bill which are very excellent, but we think that before there is interference with the power of attorney, there should be some lapse, and there should be an onus of showing errors of omission or commission.

We question the requirement of an annual report because that seems to start on the basis that there is going to be some wrong-doing or sleaze on the part of the person who has the trust of the donor of the power.

We commend for the consideration of the committee, if we may, and of the people who may be looking at this bill further, the Report on Self-Determination in Health Care (Living Wills and Health Care Proxies) prepared by the Manitoba Law Reform Commission, published in 1991. It has simpler mechanisms than seem to be here.

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Mr Chairman, I hope I have two more minutes.

The Chair: No problem.

Mr Scott: Thank you. Consent to treatment: We are asking what difference the legislation will make in the way in which the health care of older persons with deteriorating mental capacity is provided for the patient. What are the changes for the patient, the family and the health care professionals? We wonder also whether advocates will have the training and knowledge to give explanations contemplated by this bill. We think it is very important that the advocates have the training, have the experience, have the background, have the qualifications, because they will play a very important part. That is one of the things we hope the regional boards may be able to help and encourage, the proper qualification of advocates.

Turning to the question of instructions and wishes, which are distinguished in the bill, we are aware to a limited extent that the common law now recognizes advance directions, a signed written statement having been found to be adequate. I would remind the committee of the decision of the Ontario Court of Appeal in Malette and Shulman. We consider the method of giving health care direction should approximate that of the common law. However, because of the inherent lack of reliability with one person recalling another person's prior oral statements and the importance which the matter can assume, we hope oral health care directions will not be allowed to override written directions. We feel that health care directions given in writing and signed by the maker should have priority.

Section 18 of the bill provides that a person who assumes responsibility for giving or refusing consent on an incapable person's behalf is entitled to receive all information required for informed consent. We believe this provision should be clarified and, if need be, extended to state that the proxy may have access to all records concerning the incapable person and his or her treatment on an ongoing basis to the same extent as the incapable person would have. The proxy should also be entitled to have full access to and information from all health givers.

Last, we wish to reiterate a recommendation which we made to then Attorney General, February 1, 1989, that when these bills are brought into force there should be a public awareness campaign. It should include printing and distributing of clear and readable pamphlets in plain language in a number of languages to inform seniors and others about this new legislation, particularly the importance of powers of attorney for personal care and property and giving of health care directions. We hope there may be drafted some simple forms for health care directions and powers of attorney which may be of assistance to people providing these arrangements on their own and, if I may say so, without the intervention of too many lawyers, being a lawyer myself.

The Chair: Thank you. There will be about five minutes for each caucus.

Mr Poirier: I will try and do my laundry within five minutes so the government members do not end up with soiled sheets. Maybe you do not want, Mr Scott, to make sure this becomes a manna from heaven or nirvana for lawyers, but thank God you are a QC to be able to understand all that and make some recommendations. I am glad the Council on Aging has pointed out some of the deficiencies. For example, it seems that if you are a senior citizen who is in good health and not disabled or whatever, you get second priority on the Advocacy Commission, from what I read of your criticism of this. I just hope the government members will note this and be a bit more flexible as to who can qualify to sit and the percentage of representation from those people or vulnerable people or people concerned by the passage of these bills. I am glad you brought this forward.

Do you have any more precise feelings as to what you would like to see for advocates -- training, whatever; the type of services or how you perceive the advocate to help you?

Mr Scott: Speaking for the council, I must respond to the member's question that we have not endeavoured to set that out. We are a volunteer body and there were various statements made during our meetings of the task force and with the council when the task force support came. I do not think I can put anything into words at this stage.

Mr Poirier: Have you, as members of the Council on Aging, had a lot of dealing with advocates up till now? Do you have an opinion about the usefulness, importance or relevance of advocates? Have you sat down and discussed this?

Mr Scott: No, but we do support this because there is another task force of the council dealing with elder abuse, which we think is a very significant subject.

Mr Poirier: Sure is.

Mr Scott: I am on that task force, though I am not the chairman of it, and out of that study, I believe the advocates there could be of very great use. This is why, when first the Advocacy Act came out and we saw it -- that is why the council was also very supportive of Father O'Sullivan's report. I think it is fair to say our position is fully in support of advocacy. We would like to see it brought a little, shall we say, closer to the people. We think these people can be real helping hands and that is what we want to see; what they are doing. We are afraid the other acts are going to take that away, and that is why we like to see the volunteers emphasized.

Mr Poirier: Thank you. Do I have another 30 seconds?

The Chair: A minute.

M. Poirier: Good enough.

Je vais en profiter pour vous dire, Monsieur Aubut, que la prochaine fois que vous allez venir faire une présentation dans ces pièces-ci, vous allez probablement vous apercevoir qu'il va y avoir un kiosque d'interprètes. On pourra vous parler dans les deux langues. Nous avons déjà la salle 151 qui a un service d'interprètes, mais on n'a pas pu avoir la salle aujourd'hui. Donc, prochainement il y aura un service d'interprètes dans toutes les trois salles et on pourra se parler dans la langue de notre choix.

M. Aubert : J'apprécie ça et j'apprécie beaucoup vos commentaires. Merci.

Mr Poirier: I just thought I would share with M. Aubut that we shall have an interpretation service in these fine committee rooms 1 and 2 in the near future.

Mr J. Wilson: Thank you for your presentation. I note with interest that the Liberal Party has now changed its position with regard to QCs. I am very pleased to see that. I would be happy to give the next four and a half minutes, Mr Chairman, to the government, because I find that every time I give them lots of time it better strengthens my position with regard to this legislation. But Mr Jackson, in all seriousness, does have a question.

Mr Jackson: I would like to commend your comment about communicating. You can bet that the government will spend large amounts of money on advertising, but it is the nature and direction of that advertising. I certainly would like to underscore large print, which is a feature that should be clearly enunciated on your behalf. I know that was implicit.

I have a question for you. I am disturbed about two trends. I will share them with you and then you can react to them. I am concerned that the Advocacy Act is being bundled up with a series of other bills at a time when we are seeing age-sensitive decisions for cutbacks in health care, age-sensitive cutbacks or rights to access to certain medical treatments in this province. That creates a challenge. Since that is on the agenda, I would like to know how you have looked at the Advocacy Act and how that will impact an advocate's role in terms of pursuing medically necessary treatment that may or may not be available.

The second trend which disturbs me is the current dialogue on long-term care reform and why there is no discussion within that framework dealing with these issues. I have been raising it for two years. I am getting a blank look from the ministry and ministry personnel, but they are now at least admitting there are no discussions currently being undertaken with respect to long-term care reform and the unique challenges of community-based home care alternative decision-making in the family setting for frail elderly citizens. That concerns me greatly and if we are to look to this legislation to give that other whole policy direction guidance, where is the linkage? Could you please comment on those two concerns?

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Mr Scott: Perhaps I will leave to Mr Arbut about the long-term care.

Mr Arbut: I will comment on the long-term legislation. The document that has been issued so far is referred to as a consulting document and I do not think it has gone as far as we can expect when they get to the stage where they write legislation. But the essence of these, if you recall, is going to be the creation of advisory boards. We could see these instruments and we hope they will be represented by a lot of seniors; for example, in our case, where they could bring forth the complaints or neglects of seniors to the authority through the process of this board. We are concerned this time, and this is where we are in the process of our study, as to what authority and liberty these consultative or advisory boards will have to transmit the complaints of the people affected to the proper authority in terms of range of services and ability to be listened to for complaints of a personal nature, such as was implied though this.

On the first question, I do not have any particular points.

Mr Scott: I am sorry, I do not think I really can help in that way.

Mr Winninger: I for one found your presentation extremely helpful. I note that you support the general thrust of the legislation, but you have also made some excellent, constructive suggestions to make our legislation better. You note that seniors often experience a kind of gradual deterioration that has to be looked at, people who lapse in and out of lucidity. We certainly need to look at that and how we can respond to those situations. I think you would agree with me that if an attorney is perceived by the grantor of the power of attorney to be carrying out actions contrary to what the grantor of the power intended, it might be a situation where validation would be warranted, or where there is complaint from a third party that there is some perceived conflict between what the attorney is doing and what the grantor is doing that might call for validation. Would you agree those are the kinds of situations that require validation?

Mr Scott: Even more than the validation, that requires the invoking of the procedure by which the attorney is superseded. We are concerned that before anything can happen, you have to go through this.

Mr Winninger: Thanks very much, I appreciate it.

Ms Carter: First of all, I also appreciate very much your general support for this legislation and your constructive criticism of it. We agree with what you are saying on page 5 of your presentation, that there is a danger for professional people to impose their values on vulnerable people. I would like to point out that is why we have designed this system in such a way that it is going to be consumer-run, it is going to be representative of the people who are going to be receiving the services. For example, subsection 6(1) says, "A majority of the commission shall be persons who have or have had a mental or physical disability, illness or infirmity." Of course, we have those categories under section 15 for the people who are going to be on the body that chooses the members of the commission.

We have also made allowance in clause 1(d) "to take into account the religion, culture and traditions of vulnerable persons." I hope that, although we see those as very valid questions, they are taken care of in the way we have set this up.

Mr Scott: We would like to see more flexibility in the setup of both these bodies.

Ms Carter: How would you see that being achieved?

Mr Scott: The Advocacy Commission is to have a majority of these people. We would like to see perhaps included in there, as we suggested here, members of the families of vulnerable persons. Otherwise, as we have said here, we do not see that any of the frail elderly -- who is frail and who is not? M. Aubut and I are not frail. We are concerned that the frail elderly will not be able to represent themselves on this commission.

Ms Carter: I think that by definition, anybody who is too disabled would not themselves be able to be on it, but as you know, we do have a provision for elderly people as such to be on it. I think there is also a provision that the minister can, if she wishes, set up her adjunct committees which could, for example, have memberships in families.

Mr Scott: But we would like to see them right in the centre of the operations.

The Chair: Mr Scott and Mr Aubut, on behalf of this committee, I would like to thank you for taking the time to give us your presentation this morning.

ANGELA BROWNE

The Chair: I would like to call forward our next presenter, Angela Browne. 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 time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.

Ms Browne: My name is Angela Browne and I come from St Catharines, Ontario. I am speaking as an individual; I am not particularly representing any group. I have taken an interest in these three pieces of legislation for some time. I have done a little bit of work on them and I would like to share my opinion. I have a written presentation that I just gave to the clerk, so I hope everybody has a copy.

To start my presentation, it is called Summary of Issues Regarding Bill 74, Advocacy Act, 1991, and Companion Legislation.

A couple of weeks ago there was a death in my community. The victim was a psychiatric survivor. During the summer he was given Prozac for treatment of depression. As with many people, he suffered adverse effects, became manic, agitated, sleepless and spent all his money. I remember seeing him so frightened by all this. He questioned the drug and wondered whether the drug company could or should be held liable for causing him to do this. He was also thinking about suing his doctor. Though he questioned his doctor, he did not feel strong enough to carry out any action. At that time he badly needed an advocate.

In the fall he started to crash. Naturally, what goes up must come down. By mid-January or so, he hit rock bottom. He admitted himself to a psychiatric hospital ward only to be let out too soon with the aid of Prozac once again, despite his known history of bad side-effects with the drug -- and by the same doctor. He subsequently killed himself.

This was not the first time and I am sure this will not be the last time. I ask honourable committee members today, how many more people like this have to die before somebody finally decides that too many people have died and we have to do something about it?

A close friend of his recently advised me that this fellow hated being poor. He hated having to demean himself by depending on food banks and social assistance. Like probably the vast majority of people listed as vulnerable in your legislation, he wanted to participate in his community, but attitudes that functionally limit the extent to which disabled people can take part in deciding their own destinies have existed for a long time and to a very large extent they still do.

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Thinking back to his questioning of his doctor, the drug company and the drug, I find it very unfortunate that few Canadian doctors have ever been held legally liable for malpractice and negligence at the same rate they have in the United States. Even if he had lived and he had sued, he would probably have lost. Where does a vulnerable person go? What does a vulnerable person do when doctors seem to tell him how wonderful these drugs are? Is this informed consent, especially when he knew deep down inside that something else had gone wrong, something that no pill could fix? If they cannot speak for themselves for whatever reason, somebody needs to be there to help them and to make sure their concerns are heard. I just hope this person who does speak for them is somebody who has been through the system and not somebody who pretends to represent them.

Legislation for advocacy, consent to treatment and appropriate substitute decision-making legislation is long overdue, but there are certainly parts of the legislation I have conflicts with; there are other parts I feel are excellent and should go ahead. It is important that this legislation reflect the rights and wishes of the vulnerable persons concerned, and that service providers and health practitioners cannot overstep their bounds in delivering services the person does not want and that they make available services the person might want.

Before proceeding into specific points about the aforementioned legislation, I need to introduce myself. I am university educated. I am self-employed. I currently sit on or have sat on several boards and committees on a regional, provincial and national level that dealt with issues of mental health reform, social assistance, women's rights and other things for a number of years. I am an active participant in other areas of my community. I am a published author, having had several analytical papers published through various organizations and in certain publications. I hope to soon finish my book on deinstitutionalization, the failing social safety net and the necessity of a systemic approach to the development of mutual aid and decreased professionalization in the delivery of health care as a whole.

My involvement in mental health advocacy stems directly from my experience as a family member survivor of a suicide as well as a former recipient of services myself as a result of this trauma. To be point blank, I quit using the system because it basically had nothing to offer me. In its stead I kept myself busy and insisted on finding work, and I have developed a wider base of supports around me. If these options were available for my brother at the time or for the fellow who died a couple of weeks ago, I am certain they too would have survived.

Although I support the intent and purposes of the proposed legislation, I find several problem areas that need to be cleared up to ensure that one's right to self-determination remains just that and cannot ever be interpreted as someone else's right to determine somebody else's future or career, whether that be a career of a medical patient, a psychiatric patient or somebody who is being put under the control of others for whatever reason.

First, I feel that in some respects these pieces of legislation codify many valuable inherent rights, but on the other hand, if some sections were interpreted too broadly, the foundation of these very rights disappears. Second, I find that some parts of this legislation may be difficult to implement given the complexities of the subject matter at hand and the reality of how governments and organizations function. Third, while I see no way of enforcing compliance to the consent legislation, it ostensibly removes liability of health practitioners who follow the law to the letter and in sections pertaining to consent, emergency treatment, failure to find the person who is supposed to seek consent on behalf of someone deemed mentally incapable, and issues pertaining to statements made by apparent family members.

These specific issues will be classed into categories with respect to where they affect general efficiency and undermine the principles that would be emphasized in a piece of legislation like this.

There are some specific areas of concern on the next few pages of my presentation. The first area of concern I would like to highlight is specific training, employment and location of advocates. According to section 5 of the Advocacy Act, it appears that the role of the Advocacy Commission is to promote and facilitate both individual and corporate activities by which persons who are vulnerable undertake to advocate on their own behalf and to establish criteria and procedures for the training and qualification of advocates, and to implement a system of accreditation whereby individual advocates, whether paid or voluntary, can be identified as having the authority to act as advocates within the meaning of this act respectively.

How do advocates get selected? Does this mean there will be appropriate advocates and inappropriate advocates? Would accreditation be linked in any way to funding? Do advocates or agencies that employ them necessarily have to follow a party line to keep their funding and retain their rights as advocates? The concerns inherent in this kind of process are obvious, given that advocacy is effective on an informal as well as a formal level. I feel that community groups vying for accreditation under this act should not have to adhere to any party line, but should instead be guided by a set of generally acceptable ethical and accountability principles, as would any other organization.

How are voluntary advocates going to get regulated? If volunteers must be forced to comply with various rules and regulations set upon them by the province, why bother volunteering? I might as well get paid for it if I have to have that much responsibility. Aside from this, exactly who among the advocates will get paid and just who will end up volunteering? It appears to me that with my experience in community organizations, the professionals get paid and the consumers do it for free. That has to stop. The commission needs to examine issues of accessibility to ensure that paid positions are primarily available to members of vulnerable groups themselves, even if this means that special training will be provided and accommodations must be made. Because people with disabilities are economically disadvantaged, expecting them to consider volunteering more of their time is not necessarily an effective way to use their large pool of resources.

Conflicts of interest need to be avoided at all costs. While the Advocacy Act recognizes the importance of independence in administering the act itself by putting the commission at arm's length from government and putting it under citizenship, the funding mechanisms need to ensure that social agencies delivering the services, other than advocacy, do not get funded and do not get accredited under this act. Very often, social agencies themselves are a source of controversy in their treatment of vulnerable persons. The Advocacy Commission needs to be free to provide an advocate to assist a person in dealing with such agencies without worrying about conflicts of interest.

Universality of advocacy services is another problem I would like to highlight. What is going to be done about the most vulnerable among those who might need to access advocacy services now: those who have been deemed incapable and placed in the back wards of institutions long before this act will ever be proclaimed? Can provisions be made to inform all current residents of various facilities about their new rights under these acts? In its present form, it appears one must request an advocate; that is, they must know about their rights prior to being able to take advantage of them. While systemic advocacy might resolve some of this problem, information on this act must be made available to everyone; this means written in plain language, in Braille and other methodologies so that people with disabilities can understand them and it is accessible to everyone in institutions and outside them. This means you have to go before the boss of the institution.

What about vulnerable people under the age of 16 years old who wish to obtain the services of an advocate? While recognizing that child welfare regulations apply in this instance, can there be an integration of these acts to allow a role for advocates in this system as well? Many young people have experienced horrific abuses in residential institutions and group homes presumably protected by the Child and Family Services Act. Where do these people turn to for help?

Accountability of the advocacy program is the third issue. While a comprehensive system of advocacy is developed on positive principles, it too could become bureaucratized and ineffective in time. How can we maintain these general principles while allowing for flexibility to serve changing needs? I suggest a regular turnover of people appointed to the commission and that appointments not only come from within established groups. In any social movement, particular party lines develop which may serve the membership of specific groups to which this entails, but reality remains that the vast majority of vulnerable people are unorganized; they do not belong to groups. Who is going to represent them on these commissions? Opportunities need to be built within the selection process to allow persons to choose not to join specific groups but to still have access to the Advocacy Commission if that is what they so choose. This allows for a mix of fresh faces and more experienced advocates, thus proposing a more representative sample of the vulnerable population.

Although the commission is at arm's length from government, it should be accountable to the Legislature. They should produce an annual report which would be presented to the Legislature through the Minister of Citizenship. This report would include a summary of each year's activities, expenditures, staffing and other issues relating to the general operation of the commission and be made available to the general public wishing to question.

A mechanism should be in place to ensure that individual advocacy commissioners are fulfilling their roles and responsibilities as prescribed by respective legislation, and some input from the community they serve should be made available. In turn, each commissioner should be remunerated for his time as well as reasonable expenses incurred in carrying out his duties.

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The fourth issue I need to highlight is the dominance of the medical model in the Consent to Treatment Act, 1991. It appears the act removes judicial review from the initial stages in determining competency. At any given time they can put new health practitioners in the regulations, and these people will have the power to say you are competent or incompetent at the beginning. This gives them a lot of power. Any health practitioner prescribed in the regulations has the power to determine this, supposedly based on specific criteria that have yet to be listed. I am sure it will be based on the Weisstub commission, into which I had some input.

Let us suppose the criteria for capacity do get established. How can we ensure that these criteria for determining capacity are always adhered to when making treatment decisions? Ask any psychiatric survivor who experienced the Mental Health Act and one will find that this is not always adhered to. Very frequently capacity is equated to agreement with the doctor and his treatment plan prescribed for them. Have we heard of many cases where a patient agrees with the doctor and still gets ruled incapable to consent to treatment? Certainly not. They agree with the doctor; they are automatically competent. It is interesting.

Certainly in these circumstances one has the means to challenge the decision. The first stage would be the Consent and Capacity Review Board, modelled after the regional review boards under the Mental Health Act. I am concerned that medical representation on this board could bias the review process. While I have no problem with having a special advisory committee to the Consent and Capacity Review Board that would include qualified medical as well as other specialists in the area of mental capacity and assessment, I feel the board should be free of health practitioners. Studies have shown most medical doctors are no more specialized in determining competence than the general population, so assuming that a physician is on the board does not assume that he knows who is capable and who is not.

Although one could appeal the decision of this board further to the courts, many vulnerable people would not go this far. Very often in the case of psychiatric survivors, larger doses of drugs are often given prior to the hearing to make it difficult for the person to follow, thus confirming an assessment of "incapable" by the board because they are so drugged they cannot make sense of what is going on around them.

In accordance with subsection 6(1) of the proposed act, "capacity" is defined as being "able to understand the information that is relevant to making a decision concerning the treatment and able to appreciate the reasonably foreseeable consequences of a decision or a lack of decision."

This definition could be interpreted broadly to supersede one's beliefs and values and rights to alternative models of explanation and treatment. What about those people who legitimately do not believe they are ill, but instead are suffering as a result of poverty and neglect, which might be true in many cases? Look at some of these people who kill themselves in boarding homes year after year. I am sure it is not the psychiatric illness that gets them. Are they incapable because they simply do not believe that taking neuroleptics will help them get a job in the competitive marketplace? What about highly distressed housewives who refuse to believe the root of their problem is an estrogen imbalance? This definition invites confrontation of ideologies, and confrontation should be welcome in a democratic society.

The fifth item is potential abuses of consent to treatment. In section 22, the definition of "emergency treatment" allows treatment without the consent of the person or his substitute decision-maker if the person is incapable with respect to consenting to treatment and the nature of the problem is such that if not treated within 12 hours serious bodily harm will result. This can be interpreted broadly once again, given that serious bodily harm might imply perceived suicidal tendencies or living in a precarious situation whereby external influences could produce harm.

Once again, predicting suicide is not a specialized skill of a physician either. Of persons who had attempted to do this before, under this act I am sure they would be particularly vulnerable to forced treatment in the name of saving their lives, even in cases where in reality no harm would be done if they were just left alone.

Furthermore, what stops a physician from using electroconvulsive therapy against the person's wishes in these kinds of situations? We keep hearing ECT is supposed to be effective in warding off suicidal tendencies. The studies tend to contradict that. In reality it produces a head injury and it produces a temporary euphoria in some patients which merely masks the problem and simply delays the suicide attempt. We all know what happened to Ernest Hemingway.

The Consent and Capacity Statute Law Amendment Act, 1991, affects subsection 35a(5) of the Mental Health Act, which specifies that the board, in this case the original review board, could not authorize psychosurgery or ECT even upon application of a doctor. In the new act the disqualification of psychosurgery is returned, but not for ECT. I suggest that the new act spell out that the Consent and Capacity Review Board be restricted from ever ordering ECT as well as psychosurgery, as previously stated the case.

Cases of permanent memory loss are too frequent to allow ECT, even if it is a small number of cases that would be ordered by a board with the power to do so. The means to find more effective alternatives to ECT, as well as other forced drug treatments, should be made available as readily as any other medical treatment.

The next section is potential coerciveness in the Substitute Decisions Act, 1991. Under sections 27 and 29, the public guardian and trustee must investigate allegations that someone is not capable of managing his property or taking proper care of himself. If the public guardian and trustee feels that the person is suffering from serious harm as a result of these problems, he could apply to the court for a 90-day temporary guardianship order. If the matter is so urgent that proper due process would delay necessary intervention by the public guardian and trustee, the court has the discretion of dispensing with notice to the subject of the order and granting the public guardian and trustee temporary guardianship for a maximum seven-day period.

Although I feel the intent of this section is supposed to be narrow in its focus for supposedly the severe cases, many of these worst-case scenarios may fall into this category as well as a lot of cases that are not worst-case scenarios, and I feel that over time, abuses would prevail in overinterpretation of this section.

Powers of the court in this regard are quite broad. In section 46, capacity functions are defined as decisions regarding health care, nutrition, shelter, clothing, hygiene and safety. For example, if a person is ruled by the court to be incapable of making decisions with respect to all of those functions, which many psychiatric survivors have been and still are, broad powers can be granted to the appointed guardian. The guardian could force the person to live where the guardian thinks is best, could pick and choose who he sees as friends, if and where he will work and if and from where he will get treatment. The court can further order that this order include that the person can be taken to a psychiatric facility against his will.

Is this a way to shove outpatient committal through the back door? I am sure this will be the circumstance of many people who will fall subject under this act. Is there a potential for this section to be abused by some overly zealous family members or even "neighbours" in sweeping our streets clean of the homeless, the severely impoverished and the undernourished?

Again, I believe the funding for this should be redirected to community-based peer support and other non-profit alternatives. I would rather see a community group get funding to hire special support workers to assist severely affected individuals with a potential to deteriorate in these functions and their activities of daily living than see the money used to enforce the kind of police state function that this can potentially become.

The final point I have on the legislation is regarding immunity from civil suits. In accordance with section 24 of the Consent to Treatment Act, 1991, if a health practitioner administers to a person he or she believes, on reasonable grounds, to have consented to treatment, or refrains from treating someone he or she believed to have refused treatment, he or she is not legally liable for any act or omission in this regard.

If a health care practitioner administers emergency treatment, as discussed earlier, because he thinks that some imminent bodily harm will happen within 12 hours, or if he fails to do so if a person who previously consented did not consent, in accordance to sections 22 and 23 of the act he cannot be held liable for treating a person without consent or failing to treat a consenting person.

Furthermore, if the health practitioner fails to find the proper person to consent or refuse on a patient's behalf after a reasonable search, he is still not liable even if he forced drugs on somebody who really did not want them. I have serious concerns about this as this may encourage a broad interpretation of consent on the part of the physician, and negligence in this regard is unactionable.

This immunity negates the possibility of the court system getting established in providing checks and balances in this regard as well as providing remedies for people who are truly harmed through this broad interpretation of consent or refusal. I suggest that the right to sue be restored in its entirety.

I will be free for any questions any of the committee members might have.

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The Chair: Thank you very much. You each have about three minutes.

Mr J. Wilson: Thank you for coming forward today. I found your brief fascinating. A number of the points we have heard before. Just to play devil's advocate, at the very beginning when you told us about your friend who had died, would he not have been entitled to an advocate in the psychiatric ward of the hospital?

Ms Browne: This was not a provincial hospital; this was a general hospital psychiatric ward.

Mr J. Wilson: So he was just in the psychiatric ward?

Ms Browne: All he would have had access to was a rights adviser. At this time he wanted to stay in the hospital, but he was released only on Prozac.

Mr J. Wilson: Do you know of anyone who has had any experience with the advocates who are in psychiatric hospitals now? I know there are not very many. The reason I am playing devil's advocate is that my tendency would be to beef up the system we have, which we have been told is totally inadequate. I have met a number of those advocates and they seem like very decent and very caring people to me. What has your experience been in that?

Ms Browne: I find kind of a mixed response. There are some advocates who have worked in provincial hospitals who are very good and truly are advocates; there are others who try to find some way of co-opting the system. I feel that if somebody really does not want to be there, the advocate should fight his damnedest to make sure that this person is not there. If the person does not want medication shoved down his throat, regardless of capacity and so forth, and in the case of the incapable the substitute decision-maker decides not to have medication shoved down his throat, then no medication should be shoved down his throat. There should be no override clause in that section.

Mr Jackson: Very briefly, I am familiar with the Fram reports, and I am one of those weird MPPs who has actually read the Weisstub report. I still have not yet heard from the government on that issue, and contained in it is some contradictory information about the issue of consent to treatment and a definition of competence.

I am wondering if you can state very briefly for the record if you have the concern that we do not have an adequate definition of competence in this province and yet we seem to be able to proceed with legislation that purports to be able to cope with that. Could you respond to that as it specifically ties to that legal definition?

Ms Browne: A lot of these legal definitions that come out say, "you understand the treatment?" Yes, I understand the treatment. I just do not like to be given this treatment because I have very bad side-effects from it. "Do you understand that this helps your illness because it apparently has helped your illness before?"

You see, there is just too much override. A person would be considered not competent if he does not believe he is ill or if he does not believe what the doctors say or does not want to follow their prescribed plan. Some people like nutritional therapy to deal with their problems; some people like to go to a safe house; some people just like to stay at home and stew about it for a while, and that is fine. People should have these absolute options.

I have a real problem when on the one hand we allow a cancer patient to terminate all treatment, even if it results in imminent death, while on the other hand we do not allow the same right for people who are labelled psychiatric patients.

Mr Fletcher: You have some concerns regarding the Advocacy Act and who is going to be the advocate and everything else. Some groups have been coming in over the last few weeks, and yesterday one was saying that perhaps what we should do is implement the Advocacy Act and then wait a couple of years before we start implementing the other ones so that all the bugs are ironed out of that act and it gets working and the advocates are in place. Then we can implement the companion acts, and it will be all in place. Is that something that you could consider?

Ms Browne: I thought about that. You are referring to having the advocates in place first and having them work and then two years later, after reports from the advocates come back, implementing health consent and all that other stuff.

Mr Fletcher: The two years was their suggestion.

Ms Browne: Yes, that sounds more appropriate because then you are becoming more aware of some of the issues that would be involved.

Mr Fletcher: The one thing that bothers me about that is, as you say in your brief, we have waited that long. We have waited so long for something to come along, and it is finally coming along.

Ms Browne: I especially want the Advocacy Act in place. The other stuff I think probably could wait but I really believe that in order to wait, you really have to listen to what the advocates are saying and what the people are saying during the process, after the Advocacy Commission is implemented.

Mr Fletcher: We had a motion early in the week from the members opposite that we should just scrap this whole thing and send it back, which would probably delay it a few years -- three or four years perhaps. Is it that out of whack that we should scrap the whole thing?

Ms Browne: No. There are some valuable parts to the legislation and they should be maintained. If it does get sent back, something worse might come back in, so I really feel that the Advocacy Commission needs to be implemented immediately.

The Chair: On behalf of this committee, I would like to thank you for taking the time out and coming and giving us your presentation this morning.

CITIZENS COMMISSION ON HUMAN RIGHTS

The Chair: I would like to call forward our next presenter, Raymond Mallet. Just a reminder that 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 time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.

Mr Mallet: My name is Raymond Mallet and I am an investigator for the Citizens Commission on Human Rights.

I appreciate the opportunity you have provided for dialogue and I would like to discuss the consent to treatment proposals in Bill 109, which is being submitted for first reading.

I have worked as an investigator for the Citizens Commission on Human Rights for the past two years and during that time I have become very much aware of the unfortunate position these very vulnerable people often find themselves in. I will provide for you examples of the cases that have come forward with their stories.

Case 1: "I was physically abused through being punched in the face, kicked in the stomach and kicked in the back after I complained about the medication that I was being given."

Case 2: He was assaulted by attendants, specifically being repeatedly punched in the head and forcibly injected while being restrained.

Case 3: "I have experienced as a result from these medications such side-effects as vomiting, weakness and temporary memory loss. In May, I received a change in my medication that resulted in complete memory loss for days."

Case 4: He has received numerous injections of drugs. Side-effects have included Parkinsonism, which is tremors and impaired motor control. He is currently experiencing frequent loss of control of the muscles of his thumbs and hands.

The severe side-effects of the major tranquillizers given at the public mental hospitals throughout Ontario have impaired patients to the point where they can no longer return to their jobs and work for their livelihood.

Case 5: "Following the injections, I experienced vertigo, blurred vision and rigidity of my body musculature. I was a construction worker. However, I am now physically degraded to such a point that I am unable to work in construction."

Case 6: Drugs left him incapable of normal function for many weeks. He now experiences tardive dyskinesia and a speech impediment and is unable to return to previous employment in sales due to the speech impediment.

Case 7: Side-effects included the inability to control his tongue to such an extent that it causes choking to occur. There has also been increased nervousness and deterioration of eyesight. He has undergone severe physical deterioration and is unemployable. Prior to receiving these injections he was able to see clearly and was working.

In all of the above cases the patients were forced in a brutal, physical fashion to take drugs, sometimes being held down by as many as five or six attendants.

The problem of forcing treatment on a patient who does not want it is eloquently stated by Dr Thomas Szasz, author of The Myth of Mental Illness and numerous other books. "Decent, dignified medicine rests on the moral and legal premise that people have a right to reject treatment but in psychiatry, where there is no real treatment at all -- where what's called treatment is dangerous and damaging -- they can give it to you involuntarily."

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All of the above patients were considered to have provided implied consent to hospital authorities due to the fact that their right to refuse was broken down to the point where they could not refuse the medication any longer.

In the proposed Bill 109, which allows implied consent, the door is opened to numerous possibilities of abuse. This is one of our major concerns with this legislative proposal. We feel that there must be a verifiable written informed consent which should include the following:

All positive and negative results must be provided on a written information sheet for each medication and procedure. This should be written in lay terms and must be fully understood by the patient or his decision-maker if he is incompetent.

The person should have a complete and thorough medical examination to make sure that the psychiatric symptoms that are being manifested by the patient are not the result of some unknown, undetected physical condition.

Illness in psychiatric admissions -- the following study was done:

The American Journal of Psychiatry in May 1981 published a paper called Unrecognized Physical Illness Prompting Psychiatric Admission: A Prospective Study. It states: "The authors studied 100 state hospital psychiatric patients consecutively admitted to a research ward, who were screened to eliminate physical illness before admission. They found an unusually high incidence of medical illness: 46% of these patients had an unrecognized medical illness that either caused or exacerbated their psychiatric illness; 80% had physical illnesses requiring treatment, and 4% had precancerous conditions or illnesses. A workup consisting of psychiatric and physical examination, urinalysis, ECG, and EEG after sleep deprivation identified over 90% of medical illnesses present in this population. The authors suggest that such a battery be part of the routine workup for all hospitalized psychiatric patients."

They concluded with the following statement:

"Should our friend be unfortunate enough, however, to actually be suffering from a mental disorder, the chance of correct diagnosis, treatment and effective result become remote."

As concerns competency and capacity:

The definition of competency as per Black's Law Dictionary, 5th edition, is as follows: "The term contemplates the ability to understand the nature and effect of the act in which a person is engaged and the business he or she is transacting; such a measure of intelligence, understanding, memory and judgement relative to the particular transaction as will enable the person to understand the nature of his act."

The definition of incapacity as per Black's Law Dictionary, 5th edition, is as follows: "Such is established when there is found to exist an essential privation of reasoning faculties, or when a person is incapable of understanding and acting with discretion in the ordinary affairs of life."

We believe, in order to fulfil the above definitions, particularly for the purposes of psychiatric treatment, that the person being treated or, if incompetent, his substitute decision-maker must fully understand not only the nature of the treatment but also the origin of the disorder.

Therefore, bearing these definitions in mind, all persons would only meet the incapacity definition because there is no ability for discretion of understanding without a full and complete medical examination.

One could compare the person receiving psychiatric treatment without having all the written information about the nature of the illness and treatment to you or me signing a mortgage document without knowing the interest rate or the amortization period. Not only is this completely irresponsible, but also criminal.

It is vital that this committee -- in view of a few of the cases cited earlier, hundreds of others, and the definitions as above -- fully understands the need for the initial, thorough medical examination and devises for the purposes of implementation a medical examination form. This would eliminate the personal injury and suffering of so many vulnerable people and would restore dignity, humanity and trust to the mental health system.

In this decade approaching the 21st century, medicine must be directed to wellness; otherwise, the suffering will needlessly be prolonged.

With regard to the charter, in the proposed Consent to Treatment Act, Bill 109, first reading, "implied consent" and "informed consent" were tolerated only because the consequences of these concepts were not fully understood.

In the Canadian Charter of Rights and Freedoms, section 7, legal rights, states, "Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice."

Subsection 15(1) of this charter reads, "Every individual is equal before and under the law and has the right to equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability."

To ensure the security of the person, the prevention of unnecessary treatment punishing the recipient with disabilities and the protection of his right to equality and rights to proper humane care, he must have full written informed consent, not implied consent or informed consent arbitrarily applied. In order to provide the guaranteed rights per the charter, the recipient of any psychiatric treatment must feel secure and confident that he will not receive any psychiatric intrusion without being aware of the origins of the illness and the nature of the treatment, including any and all physical, emotional and mental consequences.

Therefore we feel that this committee must not allow psychiatric discrimination to override these equality rights. A full and complete medical examination would eliminate the arbitrary and uncertain psychiatric treatments.

Hopefully our suggestions will be viewed as prudent and responsible and will be made a part of this bill in its second reading. Obviously, it goes without saying that this new bill must guarantee the rights and freedoms afforded us in the charter. We thank you for this opportunity to address this committee and voice our concerns regarding these crucial points.

The Chair: Thank you very much. Questions and comments, Mr Poirier?

Mr Poirier: Would you be able to address what you have just said in light of the current Mental Health Act? How do you relate what is in the Mental Health Act and what is in front of us with the four bills?

Mr Mallet: I do not have the Mental Health Act with me, but there are certain sections that were just not being applied. Our concern is that you have the Mental Health Act but there is no application. Particularly there was a section called "psychiatric," that a patient, if he is competent, can refuse psychiatric treatment at any point in time. This did not occur. I have literally hundreds of cases who have been forcibly injected, and we are going to pass another bill. What is the use of passing another bill if you cannot enforce or get the first one applied?

Mr Poirier: Let me be the devil's advocate. Why not tighten up the Mental Health Act?

Mr Mallet: Provided it is in agreement with the Canadian Charter of Rights and Freedoms, sure. If there are any sections that are in violation of it, it will be challenged and this whole legislative committee will be found to be a waste. It will just be thrown out, because there was a recent court decision in the Ontario Court of Appeal, Reid vs Gallagher. When they were competent they had refused, for example, treatment A. Then umpteen months or years down the road they were incompetent and they were told they had to take that treatment A and they said no. So they went to court and the judge found that, since when they were competent they refused treatment A, you cannot give it to them at any point afterwards if they say no, they do not want it, in a competent or incompetent state.

Mr Poirier: Suppose you were given a one-person mandate in a commission to improve or change or whatever you wanted to do with the Mental Health Act. Do you think it could be done to meet your group's requirements or expectations?

Mr Mallet: Sure. If everything totally 100% conformed to the charter and there was no dehumanizing or degrading treatment involving electroconvulsive therapy or psychosurgery, yes, it is possible to grant these people their rights they are guaranteed under the charter.

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Mr Poirier: If that came about, would you see that these bills here would be a further danger? Keeping in mind that you have amended the Mental Health Act the way your group would like to see it amended, if that were done, would these four bills be a danger for you?

Mr Mallet: As I say, back to the charter, only the points that violate the charter and regard these individuals as lower-class or as crazy or insane, and therefore they cannot say yes or no to the treatments, yes, it would go against it, because everything has to be aligned with the charter. That is the supreme loss of what should be --

Mr Poirier: Would it appear that your main concern seems to be the non-compliance or the non-respect of the Mental Health Act?

Mr Mallet: Yes.

Mr Poirier: Out of 100%, what percentage of that non-compliance is the cause of what your group is studying or noticing?

Ms Massie-Grellin: It is very high.

Mr Mallet: Extremely high.

Mr Poirier: So if we could resolve the problem of non-compliance and close the so-called loopholes of the Mental Health Act, then maybe you would not be in front of us and having to worry about it, right?

Mr Mallet: Correct.

Mr Poirier: Members of the government have taken note, I am sure.

Mr Winninger: I certainly enjoyed your presentation. It reminded me of a time when I was still practising law and I went and argued before a judge that the treatment provisions of the Mental Health Act violated sections 7 and 15 and even section 11 of the charter. I was not too successful. It may have been because of the facts and circumstances of that particular case, but we did spend two days arguing with the Ministry of Health over some of the issues you raise.

I think, however, in hindsight that there is a balance that has been effected under section 34, I believe it was, of the Mental Health Act, that will safeguard the rights of the patient to object to treatment but at the same time ensure that if that patient lacks capacity to consent to treatment, if the patient indeed does not understand the nature of the treatment or the consequences of accepting or the withholding of that treatment, there is a very practical objection procedure laid out.

However, I would go so far as to agree with you that in practice, in the administration of the Mental Health Act, often physicians do not comply with the letter of the law. We have heard in previous presentations as well as your own that if the patient refuses treatment, he is deemed generally to lack capacity to consent to treatment, but if he accepts treatment voluntarily, then he is deemed to be capable of consenting to treatment. That is the problem we face. It may be more in enforcing the administration of the act -- and we have increased the penalties for non-compliance with these provisions -- that we can safeguard the rights of the patient that you refer to.

Mr Mallet: We have patients that, the psychiatrists being doctors, can justify their way out by saying, "I forcibly treated this guy, but he needed it." You are comparing a person who is a psychiatric patient, with a bad connotation, to a doctor in the medical field. When you get the two of them together, one does not compare.

Mr Winninger: Sure. I just want you to know it is a difficult position we are in, because yesterday or the day before we heard from psychiatric survivors who said, "I need to be assured myself that when I'm delusional and I'm refusing treatment in a hospital milieu, I'm going to get the treatment I need to snap out of those delusions." I would ask you whether you would agree with a provision that would allow such a psychiatric patient to set down in writing what his wishes are if he finds himself in a treatment facility, with a view to having those wishes obeyed.

Mr Mallet: By all means. I would go one step further and make it a criminal offence if a person was forcibly injected, because it is assault per the Criminal Code of Canada. Any violation of a person's rights, if it is a violation of a federal law, should be regarded as a criminal offence.

Mr Winninger: I see. Thank you.

Mr Wessenger: You mentioned the Reid vs Gallagher case. Certainly I would like to point out to you that the Consent to Treatment Act does try to ensure that prior competent wishes are honoured when a person becomes incompetent, so we have addressed that situation.

Mr Mallet: Yes.

The Chair: Ms Massie-Grellin, Mr Mallet, on behalf of this committee, I would like to thank you for taking the time out this morning and giving us your presentation.

Seeing no further business before the committee this morning, we will adjourn until Monday, March 9, at 10 am.

The committee adjourned at 1155.