Tuesday 10 March 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
Registered Nurses' Association of Ontario
Sheila David, president
Emily Phillips, president-elect
Lynda Parks, executive director
John M. Cleghorn
Ontario Friends of Schizophrenics
Elsie Etchen, president
June Beeby, executive director
Wolfe Goodman, legal adviser
Canadian Mental Health Association, Ontario division.
Hugh Tapping, member
Carol Roup, member
Mental Health Centre of Penetanguishene
Russ Fleming, psychiatrist-in-chief
Health Sciences Centre, University of Western Ontario
Dr Bessie Borwein, associate dean
Jane Hamilton Wilson, family educator, psychotic disorders team
Heather Hobbs, coordinator
Ontario Head Injury Association
Bill Roberts, senior manager, policy and development
Ontario Long Term Residential Care Association
Harriet Wolman, chairman, public affairs committee
Rick Winchell, executive director
Hospital Council of Metro Toronto
Paul Gamble, president
Sharon Nettleton, vice-president
Council on Aging, Windsor-Essex County
Carol Derbyshire, executive director
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Akande, Zanana, L. (St Andrew-St Patrick ND) for Mr Morrow
Mancini, Remo (Essex South/-Sud L) for Mr Sorbara
Sullivan, Barbara (Halton Centre/Centre L) for Mr Chiarelli
Ward, Brad (Brantford ND) for Mr Fletcher
Also taking part:
Fram, Stephen, Ministry of the Attorney General
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Fenson, Avrum, Research Officer, Legislative Research Service
The committee met at 0945 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.
REGISTERED NURSES' ASSOCIATION OF ONTARIO
The Chair: I call this meeting of the standing committee on administration of justice to order. I would like to welcome our first presenters, from the Registered Nurses' Association of Ontario. As you know, you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Ms David: It is a pleasure to be here today to make a presentation to the standing committee. I am Sheila David, a registered nurse and president of the Registered Nurses' Association of Ontario. Emily Phillips is a registered nurse and president-elect of RNAO, and Lynda Parks is also a registered nurse and executive director of RNAO.
The Registered Nurses' Association of Ontario is the professional voice for nurses in Ontario. The association protects the profession's interests and integrity while it influences and reflects changes in the profession and in the health care system as a whole. In keeping with our strategic directions, RNAO speaks out for nursing and health care.
RNAO promotes professional recognition of registered nurses and lobbies government and other organizations on issues that affect the wellbeing of nursing and client care. Membership is voluntary. Our members currently number 15,000 and represent every segment of registered nurses in Ontario, from student to retired, including staff nurses in the community and in institutions, and nurses in research, education and administration.
RNAO wishes to draw the committee's attention to briefs previously submitted by two of our affiliated groups, the Gerontological Nurses Association (Ontario) and the Community Health Nurses' Interest Group. Our comments here today will substantiate and build upon many of the points made by these two registered nurses' groups in their submissions to this committee.
The RNAO commends the ministries of Citizenship, the Attorney General and Health for the pursuit of the government's equity agenda. We recognize the intent of Bills 74, 108 and 109 was to protect the rights of Ontario's most vulnerable citizens, the disabled and the frail elderly. RNAO believes, however, that this legislation is proceeding too hastily, and we have very serious concerns with regard to the practicalities of enabling this proposed legislation. It is RNAO's contention that the legislative package will unacceptably encumber the role of the registered nurse and thus compromise the quality of care provided to clients and substantially increase health care costs. We will outline our concerns in three specific areas.
The unique role of the registered nurse is not particularly well understood by either politicians or bureaucrats, except for those who personally have been on the receiving end of nursing care, for clients themselves understand that the registered nurse in fact integrates and coordinates the health care system. Registered nurses are the health care professionals who facilitate access to the whole spectrum of health care services. This function is entrusted to the registered nurse because the registered nurse is the only health care professional whose focus is the whole client, with all his or her biological, physiological, psychosocial and spiritual needs. The registered nurse has the broad educational background and sophisticated set of skills to perform this function capably.
RNAO acknowledges that many aspects of the registered nurses' role will change as a result of the reform agenda of the Minister of Health. Many more of our members, for example, will practise outside the institutional sector. We are confident, however, that the role of the registered nurse will not only be preserved but become, with even greater frequency, the access point to the health care system because of our ability to offer high quality and affordability.
To begin, we would like to comment on the definition of the word "treatment" as found in section 1 of Bill 109. Under this definition, all nursing interventions, every single nursing action, constitutes treatment and pursuant to section 5 must be consented to singularly. In practice, this definition would prove to be too broad, especially with reference to sections 4 through 21.
Consider the following example: A seemingly lucid but frail 85-year-old man presents himself in the emergency department complaining of spells of dizziness and weakness. He is accompanied by his neighbour. He consents to the nurse's offer of assistance to help him undress while his neighbour leaves to make some telephone calls. The emergency department is very busy and the client is obviously distressed by the activity and noise level surrounding him. When the nurse subsequently approaches him to take his blood pressure, a routine assessment measure for ruling out a diagnosis of stroke, he seems confused and refuses this treatment.
With regard to this client's capacity, is he, as outlined in section 6, incapable with regard to this particular treatment, or is the strangeness of his surroundings affecting his capability, or has he just changed his mind about seeking treatment? If the nurse does judge this client to be incapable, there is no practical or expedient way for her to determine whether or not a guardian has been appointed or whether or not there is a valid power of attorney.
Section 10 of Bill 109 requires that an advocate visit this client promptly, but there is no way of guaranteeing that this will happen. In any case, the registered nurse is now unable to provide to this client even the most basic care and comfort measures, some mouthwash or a cold cloth for his head or even a cup of tea. There is no doubt that this client's civil rights have been protected, but what about his denial of access to immediate health care and comfort to which he also has a right?
We therefore recommend (1) that the word "treatment" be redefined to distinguish invasive and high-risk procedures from basic assessment and care measures; (2) that consideration be given to a blanket consent for a plan of continuing care; (3) that Bill 109 be amended to ensure that basic care measures are not delayed until an advocate sees the client, a substitute decider agrees to consent or the public guardian and trustee agrees to act. The client's interests might be further protected by requiring a second health care professional's opinion as to the client's mental capability before basic assessment, care and treatment is commenced.
The second point we wish to make pertains to the definition of "valid consent." RNAO believes that the principles, and more important the elements of valid consent must be clearly identified in order to properly safeguard the client's civil rights as well as the care giver's liability. If this same elderly client should require a radiological procedure, a chest X-ray or an angiogram, emphasis needs to be placed on not only who gives consent but who obtains the consent. We believe that obtaining the consent by the practitioner accountable for carrying out that treatment is a crucial element in valid consent.
RNAO therefore recommends (1) that the principle of valid consent be expanded to include the obtaining of consent by the health care practitioner accountable for carrying out the treatment for which consent is being given; (2) that actual indicators of a valid consent be identified.
The third point we wish to make centres on the issue of emergency treatment as laid out in sections 22 and 23 of Bill 109. The criteria identified for emergency treatment in the bill are totally unworkable in the real world of nursing and health care.
To refer once again to the example of our frail, elderly client who the registered nurse now believes to be incapable of consenting to treatment, who can possibly predict the outcome of non-treatment? What if the resultant harm that may befall our client is predicted to occur within 24 hours instead of the specified 12? If the registered nurse decides to commence treatment, she must ensure that the search for an authorized person to give consent on the client's behalf goes on whether the client is transferred to another unit, another facility or discharged home. Such a requirement will seriously encumber the role of the registered nurse, at great cost to the health care system.
Once treatment is started, is the entire plan of care implemented or only the intervention that is predicted to have the greatest likelihood of circumventing immediate catastrophe for the client? Should the nurse administer only the prescribed anti-clotting medication, or blood thinner, to prevent our client's pending stroke and then cease to monitor all vital signs? What would be the registered nurse's liability in this case?
Our recommendations therefore are (1) that the sections of Bill 109 on emergency treatment be amended to facilitate emergency intervention by care givers; (2) that the 12-hour time frame referred to in section 22 be deleted; (3) that the 72-hour restriction on the provision of emergency care found in subsection 22(5) be amended to ensure the continuation of client care as dictated by client need.
In summary, RNAO contends that Bills 74, 108 and 109 present major obstacles to the provision of safe and effective client care. We believe that widespread amendments are needed to achieve the kind of win-win-win situation we believe is possible; that is, the balancing of the client's civil rights and right to health care, the realization of the government's equity agenda and the protection of registered nurses' and other care providers' liability. This legislation must be simplified and rendered more user-friendly.
We understand through collaboration with our health care partners that government amendments to this legislation will occur. We urge you to share these amendments with us as soon as they are available so as to optimize the effectiveness of this consultative process.
Mr Poirier: Back on page 7 you talk about a blanket consent for a plan of continuing care. Could you take a couple of seconds to further elaborate on that? How would you see that in the practical sense -- nurses are very practical persons -- especially in the emergency ward? How would that work? What do you mean by that?
Ms Phillips: The way we would interpret blanket consent maybe is more in the long-term setting than in the emergency department, because the word "emergency" says it is a life-threatening, short-term problem. It is more the continuing care.
Someone is admitted into a nursing home. On admission to the nursing home, he may need only this type of care and treatment, but because of his dwindling health and his advancing age, while he is a resident in that facility his care may change. Therefore, we are looking at blanket consent on admission into the facility, when probably a family member or whoever has his guardianship is available. Today, families are so spread out that it might not be possible to obtain that when the patient's condition deteriorates.
Mr Poirier: Even though you mentioned that politicians or bureaucrats do not understand the role of nurses very well, I wish you would give us a bit more credit than that. But I agree with you that maybe in society, generally speaking, the role of nurses is not well understood. I tend to agree with that.
When we try to put ourselves in your shoes, if this goes forward as is, you would become incredible bureaucrats, especially in an emergency ward situation where a catastrophe comes in. Say a senior citizens' home has caught fire and they are all coming in at the same time. I do not know how the heck you could do this and not jeopardize the health of the people coming in all together at the same time, 30, 40, 50 or 60 seniors.
Ms Phillips: I agree that this is a nurse's worst nightmare. The next thing is a school bus accident, when we are lucky if the child remembers how to say his own name, let alone who has guardianship or who can sign for consent. They do not even carry identification on their persons. It would make it terribly difficult for us to do even that basic assessment.
Mr Poirier: It is interesting that on your last page you changed your text; you made an oral difference. "We understand through collaboration with our health care partners that amendments to this legislative package" -- you had written out -- "are now under way," but you mentioned "will occur." I presume your scouts have mentioned to you that the parliamentary assistant keeps repeating that we will start working on the amendments after all the presentations have been brought forward.
Ms David: It is amazing what 24 hours can do.
Mr Poirier: It is amazing, yes. The paper is still warm from the photocopier.
The other point is that on page 7 you say, "The client's interests might be further protected by requiring a second health care professional's opinion as to the client's mental capability." I assume you say something like that faced by the fact that they would come forward and leave it as is. If you are going to have to go and get a second person when I am sure there is not one ward somewhere that is suffering or enjoying an excess number of nurses -- correct me if I am wrong -- for you to go and get a second person for an opinion is just Utopia. That would not stick to reality, would it?
Ms David: I think what we are trying to do is to indicate that there needs to be some solution to the difficulty people will find themselves in. You are quite correct in that finding another nurse who is available to make an assessment would be difficult even today, but at least there is some sense that we need to have some opportunity to make sure the client's rights are recognized and also that the health care provider is protected.
Mr Poirier: If in your 10 pages the government members do not understand the downfalls of these bills between the great theory of it all that we all support, the great principle of equity that we all support, and if they want to know how it is not going to work, they just have to pass this and go to work next to the nurses and find out what kind of bloody nightmare that would be, right?
Ms David: Just to go back to your comment about politicians and bureaucrats for a second, that was not meant as an affront, but clearly those of us working in the profession are closer to the situation and have a greater understanding because we are into that particular situation. Part of the difficulty in drafting legislation, of course, is that unless you are part of the care giver team, it is very difficult to draft legislation that recognizes all the needs of all the providers as well as the clients.
Mr J. Wilson: Thank you very much for your presentation. You begin by asking the government and the committee to slow down on the legislation. Do you get the feeling there is some mistrust of health care professionals? What would be the impetus, for instance, in your health care settings for the emergency section that we have in the bill? Is there abuse going on? We have had witness after witness tell us that this is unworkable.
Ms David: I think there are two pieces to that and I will just comment on the first. There is no question that this legislation needs to be completed. What we are asking for, in terms of the slowing down of the legislation, is that there be some consistency and also that there be some consideration to what the outcomes would be if the legislation were to go through the way it is today. I do not think there is any difficulty in any of the health care provider groups that we do need this kind of legislation, but we do not need it the way it is written now.
Ms Parks: With regard to your question and the concern about language having been included with parameters for emergency treatment, I think that in any system, whether it is health care, education or transportation, a small number of incidents occur that gain a tremendous amount of publicity.
Our concern with having the restrictions that are put in this legislation is that things have been thrown slightly out of balance. Rather than serving the vast majority of what happens in health care -- the vast majority of consumer issues as well as provider issues -- the balance has come out of whack. A very small number of incidents, which perhaps could be provided for with some language, have toppled the balance and have outweighed perhaps 98% or 99% of what really happens in health care. The legislation as we read it and as we understand it and have examined it does not serve the people of Ontario, because it is out of balance.
Mr J. Wilson: I appreciate your comments very much. To correct that balance, in the recommendation where you suggest that the emergency provisions be amended, did you have anything specific in mind of a model we could use there?
Ms Parks: We would certainly like to look at any wording regarding amendments on that section. None of the three of us is a lawyer; none of us has an LLB. We serve the professional interests of the organization. I am not a legislation drafter. I would need to see what legal counsel for a variety of constituents would put together and then we would have to look at that. I do not have that particular skill.
Mr J. Wilson: Sure; fair answer. You only mentioned briefly in the scenario, at the beginning, the role of advocates. You also mentioned the minister's future goals in health care and going towards a community-based setting, which may turn out to be a pipe dream. I think you know my views on that -- you may know more about what the Minister of Health is up to than I do -- about whether we will ever have the money. But in a community-based setting, you have to have advocates working alongside in the way the legislation is written now. You have alluded to some real problems there. Can you expand on that?
Ms David: The issue of consent in the community is more far-reaching than it is in the institution. If each client who comes on a service in the community has to sign a consent to treatment, regardless of what that treatment might be, that will encumber the nurse unnecessarily.
The role of the nurse in the community is very different from that of the institutional nurse. We may have some nurses, for example, who go into clients' homes and the type of treatment they would give the client may only be a blood pressure taking, but they are there to make sure the client is receiving the appropriate medications. They count out the medications for that person. They check the client's home. In the case of a 92-year-old woman who is living alone, it is important to make sure her surroundings are viable for her. To get a consent to have blood pressure taken, when that is a very basic assessment for a nurse, would unduly encumber the nurse.
Mr Wessenger: I would first like to ask you about your recommendation with respect to a blanket consent for a plan of continuing care. I would hope that the legislation presently provides for consent for a plan of continuing care, because certainly that is the intention. By "blanket" do you mean it would cover out-of-the-ordinary treatment?
Ms Parks: One thing that we struggled with, with all due respect, Mr Wessenger, was the intent. When we met with legal counsel from the ministry before we came here, when we were doing our preparatory work, and we had several questions for clarification in assisting us in preparing this brief, we asked: "What about this? What about this?" "Oh, well, that's the intent. The intent isn't that." Well, the words are the words that are on the paper. There are 117,000 registered nurses in Ontario, and my bet is that there are 117,000 different interpretations to the intent of what words may mean. If the intent is thus and so, it should be clearly stated, rather than anyone having to interpret, because we are going to have different interpretations of what the words actually mean. If the intent is to provide for a way to have a blanket consent for continuing care, then that should be made clearer in the legislation.
Mr Wessenger: Do you have any problem, though, because the way the legislation now reads, you would still have to have an informed consent. I assume you would still have no objection to that.
Ms Parks: Certainly. Our president, Sheila David, mentioned at the outset that the Registered Nurses' Association of Ontario and our other partners in health care believe sincerely that informed consent is the cornerstone of providing health care to people in Ontario. It is not gaining the informed consent that is the problem; it is some of these other restrictions surrounding the definition of "treatment," parameters on hours, and the avoidance of clearly helping us with things such as blanket consent for continuing care.
Mr Wessenger: I have another question with respect to the obtaining of consent. You recommend that the health practitioner who prescribes the treatment should, in all cases, obtain the consent.
Ms Parks: Yes.
Mr Wessenger: You do not think even minor cases of much less intrusive acts should be permitted to be delegated to an employee of the health practitioner, because the health practitioner is still responsible, still accountable under the legislation?
Ms David: No, we do not believe it should be delegated. We believe absolutely that the person who is performing the treatment should obtain the consent. We have believed that for several years. It was our understanding, when this legislation was first coming forward, that this would be in the legislation. When we spoke to legal counsel, we were informed that the intent was there, but we could not find it and neither could they. That is very critical to us. There are a number of things that could happen after a consent is obtained by other than the health care provider.
Mr Wessenger: You are saying, then, that you do not think the wording in section 4 is adequate.
Ms David: No.
Mr Wessenger: What would you recommend we put in there, not specifically, not in exact legal language?
Ms Parks: In looking at some of the things regarding consent, a very good book has been written by Gilbert Sharpe, who is legal counsel at the Ministry of Health and has been with the Ministry of Health for some time. I would advise all members of the committee, if you have not had an opportunity to review his sections on consent in that text, you will read in his chapters on consent his belief that the person who administers the treatment or the procedure is the one to gain the consent.
The Chair: Ms Parks, Ms David, Ms Phillips, on behalf of this committee, I would like to thank you for taking the time out this morning and coming and giving us your presentation.
Ms Parks: Thank you; our pleasure.
JOHN M. CLEGHORN
The Chair: I would like to call forward our next presenter, Dr John Cleghorn. Good morning. Just a reminder that you will be given a half-hour for your presentation. The committee would appreciate it if you would limit your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, please identify yourself for the record and then proceed.
Dr Cleghorn: My name is John Cleghorn. I am the head of schizophrenia research at the University of Toronto. I am based at the Clarke Institute of Psychiatry.
I was chairman of the department of psychiatry at McMaster University from 1975 to 1983. During that time, I was coordinator of mental health services for Hamilton-Wentworth and contributed to developing the most efficient system in the province with the lowest number of beds for population.
I was psychiatrist with the psychotic disorders team at McMaster University Medical Centre until mid-1991 when I left to join the Clarke Institute. I chair the professional advisory board of the Ontario Friends of Schizophrenics. I have been practising in the care of patients with schizophrenia for 32 years. I have been conducting scientific research on schizophrenia for 24 years. My work is presented and scrutinized by scientists from this and other countries at international meetings each year.
The views I present are based on scientific evidence that is tested in several countries and accepted by international scientific standards. I mention this because this kind of evidence is to be contrasted with fictionalized accounts of schizophrenia, such as appear in the movies, or by politicized views, such as those held by groups of people who are persuaded by a particular ideology.
Schizophrenia is a serious illness. Its victims occupy 4.1 million hospital days per year in Ontario. That is out of 51 million for the total. It is about 8%, more than stroke, which is 3.6 million. Schizophrenia affects 1% of our young people. It strikes in the form of a psychosis with delusions and hallucinations at approximately age 20, and it stays with its victims, most of them, for life. As such, it must be distinguished from problems of living. The problems of living such as unhappiness, and even marked distress caused by unemployment, are a clearly different category of phenomena. Yet there is gross confusion about that in the minds of the authors of the Advocacy Act and the other acts we are discussing here. In their minds, all problems of living and all psychiatric illnesses belong in the same category and they are all caused by social inequities.
There has been great confusion about this, and there is a need for public education on the distinction between problems of living and psychiatric illness. To this end, I and my colleagues have prepared a book of which we have donated many copies to members of the Ministry of Health and other ministries, and I present a copy for members of the committee. It is written for consumers to help them understand what psychiatric illness is about, what to expect out of treatment, and what is the difference between a problem with living and a psychiatric illness.
To say that schizophrenia is a problem of living that is perpetrated by the social environment is simply incorrect. There is the implication that professionals and family members might actually aggravate the problem of living that people are calling schizophrenia. This is absolutely, totally, factually incorrect. Schizophrenia is an illness. Schizophrenia is an abnormality of the development of the human brain. In some cases, that abnormality starts before birth. In other cases, it begins during brain development in adolescence.
What does this abnormality in brain development cause? Well, it causes abnormalities in the ability to handle complicated information. It causes oddities of spoken language. It causes difficulty in the emotional expression of ordinary human conversation, difficulties in understanding and interpreting the emotional meaning of what people say. The little kid ordinarily learns language and to communicate with other little kids and family members as though he did not even have to try. The little kid who is predisposed to schizophrenia is very awkward in these regions and other little kids tend to shy away from him, so he becomes an odd kid early in life. In some cases he may not even respond well to his mother, so that he does not bond, and she has the feeling there is something wrong from the very beginning.
There is a wide variety of different problems and they are not all the same in all cases, but all cases have one or other of them. As your child grows up and becomes a middle-aged child, shall we say, he becomes quite socially isolated. He tends not to have friends; he does not know how to handle that kind of communication. When adolescence comes along, life gets a lot more complicated, as you know. Social situations become more complicated; there are difficult rules to follow -- all kinds of strong feelings. The kid predisposed to schizophrenia has real difficulty at this time and becomes increasingly withdrawn. He has to handle intense emotional stimulation and more complex cognitive information. What begins to happen then is a pervasive emotional withdrawal. The sense of vitality in that kid starts to be sapped away. It becomes flat and unresponsive. His parents have a horrible feeling that the kid they knew has left them. The body is there but the person is not the same.
As that withdrawal process and shrinkage of emotional energy occurs, so it occurs that the awareness of that person -- of himself or herself -- in the environment becomes less intense. He may become unaware of whether he is actually initiating an action or a word, or whether someone else initiated it. He does not have a sense of willing; he loses his sense of will. At that point he may mutter something and hear it as though it came from over there. That is an auditory hallucination. He may look at something on the television and think, "Does that belong to me or is that just relevant to what the television man was talking about, or is that a special message directed to me?" He becomes confused between himself and the outside world. That is the beginning of a delusion. Schizophrenia, you see, is an illness that is an affront to the rights and freedoms of a person who has it.
What about treatment? We have taken our case through his or her development to the point where he now has a psychosis. That is what I was describing, the process of going crazy, of having a psychosis. Schizophrenia has two aspects: the deficits and the inabilities on the one hand, and the psychosis on the other. What happens next: treatment. The first step in treatment is to give anti-psychotic drugs. Anti-psychotic drugs reduce the hallucinations and delusions. They improve the problem-solving thinking. They improve the ability to communicate with others back to the level the person had before and generally restore their rights and freedoms. This is in contrast to what some people say, that the anti-psychotic drugs are mind altering and dangerous. That is factually incorrect. I could say that a drug like LSD, cocaine or street drugs are mind altering and dangerous. They cause psychosis.
The drugs have side-effects, like any drug. They can cause mild tremors or other mild motor disturbances. In some cases they can cause some irreversible effects such as spontaneous movements of the lips, fingers or toes in 3% of people; cumulatively, up to 30%. Fortunately those effects are less serious than the illness itself. Fortunately research is bringing along to us new medications that are relatively free of side-effects.
The next stage in treatment is rehabilitation and here the attitude changes completely. Here the Advocacy Act and the attitudes of the professionals in rehab programs are exactly in line one with the other, because the aim is to provide the patient, who has now recovered from his psychosis, with greater autonomy. The difference in approach, however, is that one is legal and the other involves teaching and assessing the person's skills and deficits and helping to teach him overcome some of those deficits which I mentioned earlier on.
In so doing, the rehabilitation workers, the family and the client -- we call them clients now, not patients; it is not medically dominated anymore -- these people are in a partnership to attempt to achieve independent living for this person. The question is, do the consumers of this kind of service, which is being developed in this province by the Ministry of Health for many years in a very enlightened way, do the 10,000 consumers, that is schizophrenic patients in this province, really want more advocacy? What do they need?
The Chair: Excuse me, Dr Cleghorn. Just a reminder that this is an extension of the House and there will be no comments or noise coming from the people seated here viewing.
Dr Cleghorn: We need a survey. We need a sample of the 10,000, not just the voice of one or two dissatisfied people. If they are dissatisfied people, it may be that they have been mistreated. It may be that their caretaker should be charged with malpractice. That would be the approach I would recommend rather than listening excessively to the voice of one or two disenchanted people.
One thing that is quite clear is that the power of doctors to admit patients involuntarily is an offensive thing these days and I think it is time to put an end to that. There are other ways of doing it in other jurisdictions, and after all this is a power of the state given to doctors. It seems to me there is little point in setting up a way of protection, of protecting citizens against doctors, when the power they have been given belongs to the state in the first place.
In order to emphasize the point, I have brought along a form 1. That is for involuntary admission and I would like to put it on the table here by way of saying I do not want to sign them any more. Why do we not work out a different mechanism?
In conclusion, the specific recommendations for amendments would be found in the contribution of the Ontario Friends of Schizophrenics, but I just want to say that if the new acts are unmodified, the following criticisms must be expected to be heard over the next 10 years. Why 10 years? Because that is about the average life of the Mental Health Act. They change about every 10 years.
First of all, schizophrenia erodes the rights and freedoms of people who have it. Treatment restores those rights and freedoms. Withholding anti-psychotic medication minimizes the chance of recovery. I did not make this point before: The longer the symptoms are in place the more difficult it is for them to be removed, so anything that interferes or prolongs the time between the onset of the symptoms and the instigation of treatment will make the patient worse. Thus, the Advocacy Act, which could delay treatment, may do exactly the opposite of what it is intended to do in leaving a person afflicted with a disorder that interferes with his rights and freedoms.
Persons who promulgate the view that schizophrenia is a social problem discourage proper treatment and therefore do damage to the health of people with schizophrenia.
It will cost many millions to implement these laws. This province spends less than $1 million a year on research into this terrible disorder. You can see where I suggest some extra funds be allocated.
Mr Poirier: Dr Cleghorn, I have no parti pris. I am trying to look at this as objectively as I can. In the first two weeks of our committee hearings we have had some people come forward, psychiatric survivors and other groups and individuals, and hold a very strong if not violent opinion as to how they are treated, considered or whatever, including at the Clarke Institute of Psychiatry. As I said, I am not coming from a partisan position or whatever pertaining to that, but would you remind us which groups you feel support the principle but may object to the practical application of this law? Have you had discussions with groups on the outside of the Clarke Institute, either friends of patients, patients --
Dr Cleghorn: Oh, yes.
Mr Poirier: -- former patients, or whatever? Could you elaborate a bit on that, please?
Dr Cleghorn: They think it will interfere with the treatment they need.
Mr Poirier: I see. We had a young schizophrenic come in from Guelph and he recommended that he should be able to write his consent on a permanent form and in a certain sense that whenever he is found to be shying away, if nothing else, from his treatment, friends of his, the person who is his responsible person, can bring him in and force the pre-prescribed treatment on him to make sure, because they know this treatment will help him get through. Are you comfortable with that proposal, a long-term permanent consent that says, "This person is my guardian here"?
Dr Cleghorn: A consent in advance while able to consent, yes.
Mr Poirier: That is right, and if that person brings me in, this is the treatment you will give me because this is what I consent to and you will do it to me even though I may appear to be opposing it right now. How do you feel about that?
Dr Cleghorn: Yes, that would be the best thing. You see, we know these people over long periods of time. We are friendly with them, you see, so they do not object to it so much. They do not feel they are being mistreated. You have to cajole them, encourage them and say, "Hey, you remember signing that, don't you?" and the person will usually say yes and come around. Usually we do not have to go to these extremes, but to have that as a backup would be very helpful.
Mr Poirier: Why would these groups that came forward in the first two weeks hold such a violent opinion as to how --
Dr Cleghorn: I really do not know, because they do not come to us, you see. One would like to understand that better. Every profession has its people who have their shortcomings. Maybe some people have been very badly treated. Maybe they should be laying charges.
Mr Poirier: You do not have any contacts with them? They do not dialogue, because it is very upsetting to find such a black-and-white opposite view, 180 degrees, in the perception of treatment, required treatment, methodology of treatment. As I said, some people come here violently opposed to what has been done to them --
Dr Cleghorn: Yes.
Mr Poirier: -- by your profession at the Clarke Institute of Psychiatry and elsewhere. That is why I want to hear, from you, the other side of the coin, to try to get a more balanced view, because if you had been here you would have been extremely upset, also, with what people had to say. It is very confusing for us trying to determine how you look at rights.
People come forward and say, "I have a consent that says, `Give me this treatment whether I appear to want it or not.'" Others come in and say, "I've been tortured, my mental and physical health have been permanently damaged by what has been done to me there."
Dr Cleghorn: Unfortunately some of those people are suffering from an illness that involves delusions around their care, so it is not really a true representation, but it is a very difficult judgement to make as to whether that is the case.
Mr Sterling: I was absolutely amazed; I had not heard the figure that 8% of our hospital bed days in Ontario were occupied by schizophrenic patients. I was at a medical-legal conference last May on a panel dealing with living wills and advance directives etc, and one of the physicians on another panel whom I listened to indicated that there was only $1.5 million a year spent on research into schizophrenia in Canada. Is that correct?
Dr Cleghorn: No. It is slightly less than $1 million spent in Ontario. I do not have the figures. There really is a need for a great deal more and certainly appeals are being made to the Medical Research Council of Canada for a greater involvement.
Mr Sterling: So 8% of our hospital days are being utilized by schizophrenic patients and we are going to spend $20 million to $30 million for an advocacy system. To me that does not --
Mrs Sullivan: Or more, substantially more.
Mr Sterling: Or more. It amazes me how far out of whack we can get in government in terms of the priority of spending and dealing with different kinds of problems.
I am really happy you came today because often in parliamentary committees we give undue credibility to people who really do not have any formal qualifications or proof of qualification, and I am glad you are here. With regard to treatment of schizophrenic patients, is the treatment offered in Ontario and in Canada much different than it is in the other advanced nations of the world?
Dr Cleghorn: I think it is better here than in most places because of the health care system and accessibility. There has been a very enlightened attitude in our Ministry of Health for many years in terms of interacting with professionals and with clients and families in determining what their needs are. It has really been wonderful. I am not saying it is as accessible as it should be to every person with this disorder in the province, but overall it is pretty good. Now, as to the people who are so unhappy, I do not know. I mean, they do not come and explain their views to us.
Mr Sterling: Within our hospitals that are dealing with mental illness, there is an advocacy system in place.
Dr Cleghorn: Yes.
Mr Sterling: How is that working?
Dr Cleghorn: My colleagues feel it is justified in the mental hospitals system. They do not feel it is necessary in the general hospitals system or in the rehabilitation clinics such as I have described.
Mr Sterling: The other point you brought forward in your presentation was your dislike of the role of the doctor taking on the power of, in effect, incarceration.
Dr Cleghorn: Yes.
Mr Sterling: You would like the state to take that back.
Dr Cleghorn: Yes.
Mr Sterling: Perhaps in writing you could explain to me or to other members of the committee who are interested in it what the other options are. Can you summarize what the options might be?
Dr Cleghorn: I know the legal people here who have been working on these acts are very familiar with them and they are very aware there are different methods. I have discussed this personally with Gilbert Sharpe who says he prefers to have doctors do it because it is the cheapest way. We are being pilloried for having excessive powers now, and I think enough is enough. We have to find another way, even if it is not so cheap. There are other methods. There is a method in Great Britain that is not expensive.
Mr Sterling: Which is?
The Chair: Thank you, Mr Sterling.
Mr Sterling: I was interested in --
The Chair: We have five members in four minutes. Mr Malkowski.
Mr Malkowski: Certainly the information you have provided is very clear in distinguishing disorders such as schizophrenia from problems of dealing with daily life. I have a question for you: Does the Clarke Institute have a formal system in place to deal with patients' complaints?
Dr Cleghorn: Yes.
Mr Malkowski: Could you briefly elaborate on that system, how the process works and how you deal with patients who have concerns or complaints?
Dr Cleghorn: There are two levels. First of all, the staff and the patients have a very open communication system so that small problems can be brought forth and remedied very easily. There are complaint boxes around if people want to write complaints. But more particularly there is the system of appealing and refusing: Those who wish to refuse treatment or who wish to be discharged are free to call review boards. There is the whole legal apparatus that is operating every day.
Mr Malkowski: Following up on that, Dr Lorne Martin spoke yesterday, as a family physician as well as having done psychiatric interning, on the abuse of clients' rights and some concerns that he personally has seen occur. Do you agree that in some cases there are some areas of abuse within the psychiatric system, that there are times when mislabelling of schizophrenia and other disorders occurs?
Dr Cleghorn: Of course.
Mr Winninger: Dr Cleghorn, I too share Mr Poirier's concern, because we have heard the other side of the issue. We know that back in the 1950s psychiatrists or surgeons were performing lobotomies and lobectomies; no one worried about consent or advocates then. Then into the 1960s, a lot of electroshock treatments with unpleasant side effects; again no one worried about advocates or consent. Now we are into drug therapy. I have a schizophrenic in the family. Drugs stabilize him; there is no doubt about it. They remove a lot of his delusional behaviour. They have not cured him and I would suggest that it might be a little on the paternalistic side to say: "We can treat these people. We can make them better and we are concerned as medical health care practitioners about the kind of safeguards" that we as a government would like to put in place. Is there any middle ground there?
Dr Cleghorn: I am sorry. I did not understand the question.
Mr Winninger: I guess the question is, do you not see a value in these kinds of procedural safeguards being in place so that some of the abuses that have been complained about in the past, and even in the present, can be reduced?
Dr Cleghorn: I think it would be one thing to have advocacy available on request just as various legal safeguards are available now. That would be one thing, and it is another thing to have it made mandatory and filtered through the entire mental health system.
Mr Winninger: I know time has almost run out, but you seem to be prepared to tear up the form 1, which provides some criteria for a psychiatric assessment. What would you replace it with? I still have not heard.
Dr Cleghorn: It is not my job to do that. This is a legal problem. I would say there are other very plausible methods in other jurisdictions that diminish the power of the doctor and share it with another professional, you see --
Mr Winninger: I see.
Dr Cleghorn: -- so that the doctor becomes less of a lightning rod. The power to sign a form and to admit a person to hospital against his or her will is a power that is held by no other member of society and it is seen as anachronistic now and I agree with that.
The Chair: Dr Cleghorn, on behalf of this committee, I would like to thank you for taking the time out this morning and giving us your presentation.
ONTARIO FRIENDS OF SCHIZOPHRENICS
The Chair: Let's call forward our next presenters from the Ontario Friends of Schizophrenics. As you are aware, you will be given half an hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. Could you please identify yourselves for the record and then proceed.
Mrs Etchen: My name is Elsie Etchen and I am the president of the Ontario Friends of Schizophrenics. With me are June Beeby, the executive director of our organization, and Mr Wolfe Goodman of Goodman and Carr, who is our legal adviser for this morning.
Ontario Friends of Schizophrenics is an organization of approximately 3,000 family members who have direct knowledge of schizophrenia through their experience in caring for a family member who suffers from this disease. Many other people daily contact our provincial office and our chapters for information and help.
We are very grateful to the Ontario Trillium Foundation whose grant has made it possible for us to have Arthur Fish analyse the legal implications of the bills and help us understand them. This is the first time ever that we as an organization have been able to appear before a committee like this one, representing our members, and present you with a comprehensive brief.
On page 2 of our brief you will find a description of schizophrenia. As you have just heard from Dr John Cleghorn, in schizophrenia the brain does not develop normally. Schizophrenia is the most prevalent of all serious psychiatric illnesses and is also one of the most expensive, as Dr Cleghorn has said. Everyone has a 1% chance of developing schizophrenia some time in his or her lifetime, and at this particular time in Ontario there are about 50,000 people, or perhaps a few more, with this disease.
As Dr Cleghorn has said, schizophrenia can be treated with anti-psychotic medications, but the common experience that we have in Ontario Friends of Schizophrenics is that many of our family members resist taking medication and avoid going to hospital because their judgement is distorted and they do not think they are sick.
During these hearings, a number of our family members have shared their experiences in trying to get care for a relative. Often their efforts have been frustrated because of restrictions in obtaining psychiatric care under the Mental Health Act. They have also told you that their family members are highly suggestible and some resist treatment and hospitalization after being told by an advocate of their right not to be treated or hospitalized.
These bills are based on principles that we as an organization endorse; that is, enhancement of autonomy, recognition of capacity, preservation of rights and providing for substitute decision-making. The Consent to Treatment Act parallels some of the provisions in the Mental Health Act, with which we are very familiar. While we endorse these principles, we find the bills do not provide the balance between protecting legal rights and providing speedy access to treatment. Rights are emphasized, protecting wellbeing is not.
Before turning to the bills themselves, may I say how frustrating we have found the consultation process to date. Ontario Friends of Schizophrenics has had dialogue with officials because we have been persistent and because we have done our homework in making some solid proposals for improvements in the legislation. We have been unable to meet with a single minister of the three ministries concerned, despite repeated requests and despite the fact that people with schizophrenia are one of the largest groups in the vulnerable population that will be affected by these bills.
We still have no idea of what kind of amendments there will be. We could have made ever so much more of a contribution -- and this is true of many of the other concerned groups -- if we had been asked to comment on the suggested amendments, if we had been asked to share in what should be, after all, a non-partisan exercise, rather than having to keep on insisting on being included in the consultation process.
We have presented a very detailed list of amendments we would like to see to the bills and I will just go over each bill individually with some highlights.
You have heard some very compelling stories from several of our family members. There is no question that these care givers, and many more like them, are real advocates for their relatives.
Last spring we wrote to Premier Bob Rae asking that families be recognized as advocates for their relatives with schizophrenia. He replied on May 15, 1991: "Your plea for more involvement in the mental health care decision-making process is indeed needed. The full partnership of consumers, families, service providers and medical practitioners is a necessity." Bill 74 makes such a partnership impossible and it must be changed.
On pages 13 and 14 of our brief, we summarize the changes that must be made to Bill 74.
Among the most important of our recommendations are the mandatory participation of families in the Advocacy Commission and the appointments advisory committee, if this is retained. Mandatory advisory committees: One must be an advisory committee of families. The definition of "vulnerable person" must be changed so that the seriously mentally ill get first priority in the provision of individual advocacy services. The Advocacy Commission must be publicly accountable. Advocates must be trained and certified so they will be knowledgeable about the people whom they serve. Vulnerable people must be protected against untrained, unqualified and incompetent advocates. We urge you to look at some of the precedents in the Regulated Health Professions Act, which this government has just recently dealt with. There must be a definition of capacity to instruct an advocate. Non-instructed advocacy must be the exception to a general rule that advocates must act on capable, voluntary and informed instructions.
I also want to remind you that this bill gives more access to a private home for an advocate than is the present case for a police officer, and we are asking you to protect the privacy of the homes of families.
In relation to Bill 108, I will deal with part of this and we will ask Mr Goodman to deal with part of it too. I will speak to the first section, or the first group, and then I will ask Mr Goodman to speak to the second.
We agree that there needs to be a substitute decision-making process set out in legislation for persons suffering from schizophrenia. There are persons suffering from schizophrenia who agree to be treated and those who refuse treatment.
One important area where this committee can make a real difference in improving Bill 108 is regarding the powers of attorney for personal care. We ask you to enact a scheme for pre-validated powers of attorney. We have included proposed amendments in appendix 2 of our brief. Of all our proposed amendments to Bill 108, this one offers a very important opportunity to improve the situation for people with schizophrenia.
This proposal really does not break new ground. Similar provisions are now found in at least the states of New York and Massachusetts. It would allow people with schizophrenia to work out plans for their treatment when they are capable, knowing that those plans would be followed with no delay when they become incapable, and it would avoid the expense of guardianship as well as the difficulties.
For those who refuse treatment, the guardianship provisions in sections 52 to 62, that is, court-appointed guardians of the person, create enormous barriers for us. We have been told repeatedly we do not understand the benefits of these sections and the related sections in Bills 109 and 110. I would like to just refer briefly to something called the Fram report. This was the basis on which this legislation was built. I would like to read a brief paragraph about what this committee said about court-appointed guardians. It said:
"Furthermore, they believe the cost involved in the process is also unnecessary, as the state of incompetency is transitory, and there are no other decisions a guardian would be required to make. Committee representatives from the Ontario Hospital Association, the Ontario Medical Association and the Ministry of Health believe that the recommendations regarding patient refusal are more suited to chronic incompetency and long-term care situations."
So you are dealing with guardianship provisions that really do not suit us, and some of the people on the Fram committee endorsed this point of view. I would like to add parenthetically that we were not part of the group reviewing the substitute decision-making process.
We have been told that approximately one third of our members' relatives would refuse to sign a pre-validated power of attorney. That is a very considerable number of people. And perhaps up to one half of all the people who have schizophrenia at some time in their lives do refuse treatment during the course of the disease.
We want to understand what we do not understand and we have asked Mr Wolfe Goodman, our legal adviser, to discuss with you the import of sections 52 to 62 and related sections in other bills. Also, we have taken the personal story you heard from Margot Hamblen, who is here. We have assumed these bills were in force and we have described the problems they create. This has been distributed to you today: Will Guardianship Work with Persons Severely Ill With Schizophrenia?: A Case Study. Our answer is definitely no. We would like Mr Goodman to tell you now what we think the import of these sections is for us.
Mr Goodman: In dealing with the typical situation where the individual has not previously given anyone a power of attorney for personal care, but the person is now suffering a severe psychotic episode as a result of schizophrenia, some method has to be found to ensure prompt admission to a hospital or psychiatric facility where a person can be treated promptly, appropriately and discharged as soon as the psychotic attack is over.
You have heard from Dr Cleghorn that he and presumably other medical practitioners who are experienced in the field have a rather strong aversion to making use of the extremely drastic provisions of the Mental Health Act in order to admit a psychotic patient to a psychiatric facility.
What are the alternatives that are available? I suggest with respect that unreasonable obstacles are being placed in the way of a family member who seeks to have a schizophrenic relative admitted during a psychotic attack and to have that person treated. Under Bill 109, section 4, no health practitioner can administer treatment to a person unless either of two conditions exists: Either "he or she" -- that is, the health practitioner -- "is of the opinion that the person is capable with respect to the treatment, and the person has given consent" -- and obviously that does not apply to someone who is suffering from a psychotic attack, who is not capable -- or second, "he or she is of the opinion that the person is incapable with respect to the treatment, and another person has given consent in accordance with this act."
In those circumstances, subsection 10(1) requires the health practitioner to advise the patient that the practitioner considers the patient incapable and to give the patient written notice that the patient can meet with an advocate and can make an application to the Consent and Capacity Review Board. The practitioner must then notify an advocate who must promptly meet with the patient, explain the effect of the finding of incapacity and the right to make an application to the board. Then the advocate can report to the health practitioner under section 10 that the patient has decided not to make an application to the board. Only if the health practitioner has received such a report from the advocate can the health practitioner provide a treatment which has been refused by the psychotic patient, but which has been requested by a caring family member.
Now, with all due respect, this is not the way to treat a human being who is suffering a psychotic attack as a result of schizophrenia. It elevates formal patient rights to such a degree that they are actually harming the people who are supposed to be helped.
In a proportion of cases, it is possible to obtain a power of attorney from a lucid patient during a period of remission, authorizing someone to act on his or her behalf and to consent to medical treatment on his or her behalf. Unfortunately, as Bill 108 and following have been drafted, this is not capable of achieving the desired care in the case of a psychotic patient. Let us look at that.
In the case of powers of attorney for personal care, subsection 47(9) of Bill 108 states, "The power of attorney is not effective until it is validated in accordance with section 49." Then there follows a cumbersome procedure involving an application to the public guardian and trustee. An assessment is then required of the mental capacity of the grantor of the power of attorney, and if the assessors certify that the grantor is incapable, then formal statements to this effect are filed with the public guardian and trustee.
The public guardian and trustee then appoints an advocate to meet with the grantor and explain his or her right to oppose the validation of the power of attorney. The advocate then reports to the public guardian and trustee about the meeting and whether the grantor opposes the application. Only then can the public guardian and trustee validate the power of attorney, and if the public guardian and trustee declines to validate it, an application can be made to court.
With respect, this might well be a suitable method when you are dealing with a disorder like Alzheimer's disease, but it is entirely inappropriate when you are dealing with a psychotic attack of a psychiatric patient. The person is in a state of extreme tension and requires immediate medical attention. He or she is refusing the medical attention typically because he or she does not believe that he or she is ill, which is a normal concomitant of the psychiatric situation. Even if that person has, while lucid, provided a power of attorney for personal care, Bill 108 goes out of its way to provide unnecessary delays in ensuring that care is available.
Bill 109 contains similar problems. Subsection 13(1) provides that instructions with respect to treatment contained in a power of attorney for personal care are valid even if the power of attorney has not been validated under the Substitute Decisions Act, Bill 108. However, where a family member tries to give consent under Bill 109, clause 17(b) requires him or her to make a statement that "indicates that he or she has no reason to believe that the incapable person might object to him or her making the decision to give or refuse consent."
If we are dealing with a person who is suffering a psychiatric attack, a psychotic attack, as a result of schizophrenia, it is likely that person will be objecting very volubly at the time to receiving treatment. How can the family member make the statement referred to in clause 17(b) in good conscience, notwithstanding that there has been a power of attorney given when that person was fully competent, authorizing that treatment?
Section 19(2) of Bill 109 states, "If a person is sixteen years of age or more and objects to being admitted to a hospital or psychiatric facility, only a guardian of the person appointed under" sections 52 to 62 of Bill 108 can consent to his or her admission. That means that a power of attorney for personal care cannot be used to authorize the attorney to have the patient admitted to a hospital or psychiatric facility. This is wrong in principle in our submission.
In the more typical situation, where there is no power of attorney given, we have an extraordinarily cumbersome procedure that should take a sufficiently long period that the psychiatric patient is either over his or her psychotic attack or has fled from any possibility of being treated. It is not conducive to proper treatment. There must be a method by which a caring family member should be able to get a patient admitted to a psychiatric facility.
We recognize that there are important questions of personal integrity and civil rights that have to be respected. But unfortunately there is a very serious conflict between the danger a person can do to himself or herself by refusing treatment at a time when that treatment is needed, and the need to have that person admitted for treatment by a caring family member. The situation is even more extreme where you have a consent that has been given when the person is lucid. Surely it should be a matter of government policy to validate that arrangement and to do everything possible to ensure that a person who is given power of attorney for personal care while competent is able to have that implemented.
Mrs Etchen: We will just conclude by talking a bit about Bill 109. We have tried to prepare amendments to harmonize the bill so that there are common definitions throughout the bills. In addition we have proposed many other amendments. We have submitted them in our appendices.
We are particularly concerned about the definition of "capacity" and we ask you to consider the conflict between the provisions of these bills and the Mental Health Act itself, as amended by Bill 110.
We are particularly concerned about the admission of an involuntary patient who can be detained, restrained, observed and examined. But bills 108 and 109 allow a guardian with custodial powers to take a person with police assistance to a psychiatric hospital and admit him or her, and probably an advocate would have them out soon, because these provisions violate the Mental Health Act. This probably also applies to the temporary guardianship provisions of the public guardian and trustee. We see these conflicts in the bills and we ask you at least to review them and remove the internal contradictions.
As was discussed here yesterday, there are rumours all around that the government plans to withdraw these bills, or at least Bills 108, 109 and 110. These bills, with Bill 74, are a package and it is very difficult for us to see how you could possibly proceed with Bill 74 on its own. If you do proceed, however, please take all bills as a package and please make sure that the family care giver advocates, whom we represent, present the unique needs of the people with schizophrenia and that these needs are reflected in the legislation itself.
Mrs Sullivan: Before I start with my question, I want to congratulate the Ontario Friends of Schizophrenics for the work it has done in preparing this report. It has been extremely useful. As you know, we have met on several occasions in relation to these bills, and the work you have done not only in preparing this report but all the way through that consultation period has been useful and will contribute to well-drafted, important legislation.
You joined yesterday with the coalition of care givers and service agencies requesting that the bills be withdrawn as a package and brought forward in a redrafted form. Much of your redrafting clearly would go a long way to a positive end in that matter. Would you, for the record, like to speak particularly about your participation in that effort?
Mrs Etchen: How far back would you like me to go? In the process, we prepared something called Through the Maze. We distributed this widely. I think our executive director is beginning to get a little anxious that we are distributing things and not recovering our costs. We have distributed maybe 500 or 600 copies of that, with the coalition that we met yesterday.
Our position is the same as the coalition's, that the bills stand or fall as a package. The ad hoc group met over three or four months. We identified our common problems. We do not all have the same problems, but we all have a certain number in common, and we say that the bills would benefit greatly if they were withdrawn. We could sit down and talk to the legal draft people and, with them, understand the implications, and they could understand the reality we are facing.
Mr Sterling: I want to use my question not to laud you, because you know I already do, but I would like to ask Mr Winninger, on your behalf, is there a philosophical problem with utilizing a power of attorney for personal care for involuntary treatment in a mental institution or hospital?
Mr Winninger: We are certainly looking at the issue and the recommendation that there be pre-validated powers of attorney. I would ask Mr Goodman whether he thinks perhaps pre-validated powers of attorney might be restricted where the donee of the power is a family member.
The Chair: This is Mr Sterling's time, I would like to remind you.
Mr Sterling: That's fine; I am quite willing.
Mr Winninger: It is kind of a dialogue whether perhaps it would be appropriate where the family member is the appointee but not perhaps where a friend or stranger is the donee.
Mr Goodman: The idea clearly is to find a caring person who is an appropriate donee, and families differ considerably. In some cases they are very close and in some they are not, and in some cases one can imagine that a close friend might be the appropriate person. I do not think there is any blanket answer. It is a question of fact.
We know this is a very serious responsibility. A power of attorney for financial matters is a serious concern. A power of attorney that authorizes someone else to act on your behalf for medical or psychiatric care is far more serious. One ought not to sign it lightly, but it is interesting that a significant number of schizophrenic patients are prepared to sign such powers of attorney during periods of lucidity.
Mr Winninger: We have heard very compelling presentations that would support your comment.
Mr Malkowski: Thank you for your very comprehensive presentation. Going through your recommendations, on page 14 you are talking about mandatory advisory committees. You are saying there should be an advisory committee including family members and health care professionals. I am just wondering about the consumer groups, people who have already had experience in this area, like psychiatric survivors or people who have been misdiagnosed. Do you think it is important to get the consumer perspective on the advisory committee? You would then have your family members, health care professionals and the consumers. Do you think this would provide a balanced perspective?
Mrs Etchen: What we are talking about are advisory committees to the Advocacy Commission itself. The bill makes provision for them to be appointed. We were thinking there would be one advisory committee of families and another advisory committee of professionals. Certainly we would have no objection whatsoever to an advisory committee of consumers. The bill as it is written, as you know, provides for a majority of the persons on the Advocacy Commission itself to be consumers, so perhaps there is not the same necessity for consumers to be a special advisory group. Families were not included at all in the bill as it is presently drafted. But certainly we have no problem at all with consumers having a special advisory committee.
The Chair: Mrs Etchen, Mrs Beeby and Mr Goodman, on behalf of this committee, I would like to thank you for taking the time out this morning and coming and giving us your presentation.
CANADIAN MENTAL HEALTH ASSOCIATION, ONTARIO DIVISION
The Chair: I would like to call forward our next presenters from the Canadian Mental Health Association, Ontario division. Good morning. Just a reminder that you will be given a half-hour for your presentation; the committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr Tapping: We are going to endeavour to keep it less than 15 minutes. We have a brief. We are not going to read it to you. I urge you to read it.
Good morning. My name is Hugh Tapping. Beside me is Carol Roup. Before I begin, I have asked the clerk of the committee for one of those standby-list places. After hearing the previous presentations this morning, there are many important things you should hear from me as a citizen who has been involved in mental health and advocacy since 1967, and not as a representative of any organization or agency. There are many things you heard this morning which are not true; they are not real and they are personally offensive. I am one of those people they were talking about. My philosophy says there is no such thing as "us" and "they." Like it or not, we are all in this boat together.
I am a member of the board of directors of the Ontario division of the CMHA. I am on the executive committee. As part of my responsibilities, I am co-chair of the policy advisory committee. Carol, beside me, is our staff person for that policy process.
The Ontario division of CMHA is a member of the Ontario Advocacy Coalition, and we support its brief to you. As Mr Malkowski said a month ago today in his statement to this committee, vulnerable people, those of us who experience difficulty in expressing our wishes or knowing our rights, are especially vulnerable to abuse, neglect and exploitation. I would like to correct Mr Malkowski's statement, however. It is not just difficulty in expressing our wishes or knowing our rights; there is that standing-up-for-our-rights issue with which we have difficulties, not always of our own making.
I would go a bit further and point out that the organization for which I am speaking today was founded over 70 years ago to try to address the abuse, the neglect and the exploitation endemic in our mental health system.
Father Sean O'Sullivan's report to the Legislature a few years ago was called You've Got a Friend. We need friends, and this legislation may perhaps help us find those friends.
Two summers ago I attended the longest coroner's inquest in Canadian history. I am the sole citizen, besides the jury, who endured the months of testimony about a place called Cedar Glen Boarding Home and the death of a man named Joseph Kendall. I urge you, I implore you: Do as that coroner's jury recommended and pass this legislation. I have been to too many inquests which made recommendations which were never acted upon.
There are headlines every day about the recession and the deficit, and I know that members of this committee must be concerned about what this is going to cost. It is hard to be precise. It looks like these proposals are going to cost millions. In hard times everyone becomes more vulnerable, especially those of us who are more vulnerable to start with. It will take time and talent, energy and money, to do the right thing right here. Please, try to ensure that there are adequate resources available so that this can be done right.
The Ontario division of CMHA is not a pro forma member of the Ontario Advocacy Coalition. That is to say, we do not send off a delegate; we send off a representative. Hundreds of hours and a few thousand dollars have been spent examining and discussing this proposed legislation in considerable depth and detail. Our policy advisory committee, our executive committee, board and staff have given a lot of thought and attention to this. Our rather slow but careful process has left us with something close to consensus, but we do have some differences with the OAC position on several issues. Carol will take you through the highlights of those points. I urge you again to read our brief later for details.
Ms Roup: My name is Carol Roup. I am the director of social policy and research for the Canadian Mental Health Association, Ontario division. Through 35 branches located across the province, a range of community mental health services and programs are provided by the CMHA to local communities. These services include employment, housing, social rehabilitation, case management, advocacy and public education. With advice and input from both staff and volunteers involved with the provision of these services, the Ontario division devotes considerable effort to ensuring that policies, practices and legislation respect the human and legal rights of people with mental disabilities. In this respect, the Ontario division board of directors places a high priority on the organization's role in systemic advocacy.
As we have made clear in our submission, our position is an active endorsement of the Ontario Advocacy Coalition's full brief. The amendments suggested by the coalition enhance the proposed legislation considerably and stand to place Ontario in a position of leadership in Canada with respect to progressive legislation. However, we do have two departures from the coalition's position which we feel we must bring to your attention today.
The first has to do with subsection 55(3) and section 57 which introduce the notion of partial guardianship. Our organization supports these sections of the bill as serving the needs of people who experience fluctuating incapacity to make personal decisions in specific areas and who may also have periods of incapacity over time. We believe partial guardianship enables a court to choose a less restrictive alternative than full guardianship.
The second departure from the OAC's position has to do with section 34, which deals with the issue of secrecy in respect of all information about a vulnerable person. Again, our organization supports this section of the bill and recommends there be no amendment. Our position here is that there is a danger in legislating the behaviour of advocates and inadvertently portraying them as informants. The duty of the advocate is to respect the right of the individual to self-determination. We suggest that a policy or code of ethics established by the commission might further address this complex philosophical issue.
You have our submission, as Hugh has mentioned, so in the interests of time I will simply highlight a few additional points which we believe are important.
We believe that through the policies of the proposed commission the most vulnerable people should be our first priority.
We believe there need to be adequate resources available. Advocates, assessors, as well as staff of the public guardian and trustee's office will need to be on call seven days a week, 24 hours a day, if the schemes presented in the legislation are to serve the needs of vulnerable people.
We believe the implementation of the Substitute Decisions Act and the Consent to Treatment Act should be delayed by a minimum of two years for the Advocacy Act to be fully and effectively implemented. This is to ensure that before the system is overwhelmed with demands for rights advice, the commission has time to establish sound policies, standards and procedures for the advocacy system.
We believe the importance of training needs to be emphasized. The successful implementation of all four pieces of legislation rests heavily on recruitment and specialized training of a multitude of professionals and others who will assume a critical role with respect to the very varied needs of vulnerable people.
We believe a broad-based education process should be undertaken by the lead ministries involved with the legislation and continued by the commission immediately upon its formation. This poses a considerable challenge, especially with respect to vulnerable people and cultural sensitivity.
Finally, we believe that once proclaimed, these acts have to be enforced, and that through the authority of the commission a simple but effective complaint system needs to be put in place.
Mr Mancini: I was interested, sir, to note the strength of your argument when you first started and kind of told us, but did not go into any specifics, that we had heard a lot of things that in your opinion were, if not factually incorrect, then maybe somewhat exaggerated in one way or another. I am very curious to know a little bit more specifically about that. Could you maybe take a moment to point specifically to one or two areas that you would consider to be matters we should hear?
Mr Tapping: You are really putting me on the spot, Mr Mancini. I am here as chair of a standing committee of an organization and you are asking me to switch that hat to my more traditional hat, namely, my own hat. This is a preface to my remarks, saying that I am not now speaking for the Canadian Mental Health Association; I am speaking for Hugh Tapping.
At age 16 I was diagnosed -- I prefer the word "labelled" -- schizophrenic, a particular version of it. I do not know if you are aware that there is actually a standing committee of the American Psychiatric Association which defines these diseases. That is the rational basis for these things. Mine was incurable. I have had access to my medical records and I am overdue by about a decade now for a lobotomy and a permanent place in a back ward.
Among the things this morning that really shook me up was the assertion that science and scientific facts are somehow not ideological. I would ask anyone to read anything from high-school-level political science, sociology, even philosophy. That is just not true. Everything is ideological, ultimately, to ideologues.
I was very concerned with the general tone of "these incompetent people." I was very concerned that the condition which I purportedly suffer from -- I would prefer the word "experience" -- should somehow give me an out from the Charter of Rights and Freedoms. People are people. Some of us are not very competent at some things. Others of us -- those of us, of course, who get elected to the Legislature -- have to be competent at just about everything. I do not think I am that different from you. I know that in our society, that can often be a frightening thought if it is not presented carefully and with a bit of wit.
One other thing was with reference to science again and how it is scientifically proven and known. Well, I have a paper at home somewhere in the rubble of my desk by a psychiatrist, no less, from Colorado, I believe. He had a nice little grant for a few years. He went to the World Health Organization and looked at its data and its statistics. What he discovered, somewhat to his chagrin, was that nowhere else in the world is the outcome of this condition as bad as it is in our medicalized, high-tech western societies.
He goes on for pages about, "Are we talking about schizophrenia?" and yes, he buys this medical model of things. I know from my own considerable world travels that people do go crazy everywhere, often-times right at that stressful time of adolescence, early adulthood; no question. According to the World Health Organization, nobody does worse than us. The rest of the world, as long as it is not a medical intervention with drugs, electrodes, strapping people to their beds naked and alone, as long as we do not do that sort of thing, it seems things self-correct at a far greater rate than they do here. We must be doing something wrong.
Mr J. Wilson: Thank you for your presentation, of course. In much of it, admittedly, you agree with the Ontario Advocacy Coalition, but I am interested in this latter discussion. You heard Dr Cleghorn this morning saying that he would just as soon do away with form 1 and that it is really a burden on the medical profession that the state imposes on them to give them authority for involuntary admissions. Along that line, I would ask you, though, in your experience, is there never a case for involuntary admissions?
Mr Tapping: Mr Wilson, are you asking me, myself, or me as part of this deputation? Like I said, I am on the standby list. I would very much like this committee to talk to the clerk so that we can go into these things in greater detail.
Mr J. Wilson: Whatever way you feel comfortable.
Mr Tapping: As a democrat, I am obliged to act in a democratic manner and not speak for myself when I am here as a deputant for an agency and an organization.
The answer is that of course there is a need at times. I think it should be something better than how many beds are available tonight, which is all too often my experience. There is this wonderful paradigm of the locked door at the admitting ward and a crowd of people on both sides of it. There is a bunch of people saying, "Let me in, let me in," and they are being told, "No, you are not crazy enough." On the other side of the door there is a bunch of people saying, "Look, I know I am messed up, but this isn't what I want. Let me out of here," and they are told, "No, you're too crazy."
But to answer your question succinctly, yes, there is sometimes a need for help of a very careful and controlling kind.
Mr J. Wilson: Have you looked at ways we might be able to get rid of the form 1? Actually, today with Dr Cleghorn is the first time this committee has been told that other options have been suggested to the Ministry of Health over the years. In fact, we will ask for a briefing on that. Has your organization given any thought to perhaps a more humane way? I think it was alluded to during Dr Cleghorn's questioning that we get very black-and-white cases put to us. We do have people who appear who say, "Never, ever, ever." We have the middle of the road, but more extremes than we have people saying -- particularly families. I have to admit that my own bias, coming from a family with someone who suffers from schizophrenia, is on the side of the families because I have just seen the horror that occurs, but I am trying to understand both sides.
Ms Roup: I will take that question. Our organization has not considered that because in fact this is the first time I have heard that put forward. We certainly might.
With respect to your question about whether there are times when people should be involuntary committed, I do not think anyone could disagree that there are times. The Mental Health Act adequately covers a provision that allows people to be involuntarily committed if they are a danger to themselves and others. We feel the Mental Health Act has taken care of that.
I know you have had evidence presented to you that the Mental Health Act is routinely ignored and that it is not a matter of the Mental Health Act not working as much as a matter, as Hugh has pointed out, of the number of beds available and the number of alternatives available in the community. A number of our branches are forced into individual advocacy simply because they are the only game in town. If adequate supports were available in the community, we might be able to avert some of those involuntary admissions, or at any rate avert family members feeling that their only out in the situation is to have their relatives committed.
I think our organization feels this legislation is supportive towards families not only in giving them priority as substitute decision-makers and guardian representatives, but also in that once we have advocates in the field, there is quite a body of evidence to support the fact that there might be pressure on the system to build up the community alternatives, which would include family support.
Mr J. Wilson: But on that point, there is a limited amount of money. We are already looking at rationing of health care. I have played devil's advocate and asked a lot of different groups, "Do you want the money spent on advocates?" because what if an advocate says, "Well, I need a bed"? It does not matter if the patient is saying that or the family is saying that or the advocate; it is not going to change things. The fact of the matter is we do not have beds. We do not have money.
So I do not understand, and I have been trying to for weeks. A lot of groups come, and I think the crux of the problem is we do not have the community resources. To add another layer in cost -- I was going to say to the nurses, "Do you want more nurses or do you want advocates?" Someone has to bite the bullet in this society and make some tough decisions. We have had too much of promising everybody everything, and this legislation unfortunately gets caught up in that debate.
Ms Roup: I do not believe it is the role of an advocate to decide on whether somebody needs a bed or not.
Mr J. Wilson: But what if they are voicing that on behalf of someone who wants in the door, as you say? We do not have the money now, it seems. It seems pretty evident to me as Health critic that we do not have the money now to properly give the services that we say and that the World Health Organization says we should be providing.
Ms Roup: We are not convinced that once an advocacy system is in place the hospitals will be overwhelmed with a response for more beds.
Ms Carter: As regards advocacy, you say you subscribe fully to our vision of the role of advocates as respecting the right to self-determination by the individual. There is obviously no philosophical difference between us there, but you do not agree with the amendment that the Ontario Advocacy Coalition is suggesting.
What in your opinion should an advocate do if he comes across a person who is not capable of expressing his opinion but who obviously is being abused or is in trouble? I think the example sometimes given is somebody who is lying in sheets that are soaked with urine and is not being cared for properly, or if, for example, we come across somebody who is expressing suicidal tendencies. What do you think should happen in those instances?
Mr Tapping: Two parts, the latter first, and then I will ask you to remind me about the first one: If a person is saying, "I'm going to commit suicide," my experience is that the person who is going to commit suicide -- and I have known too many of them -- stops talking about that. They cheer up, actually. Everybody is really assured. "Oh, boy, the storm has finally broken" sort of thing. Then it turns out that, yes, the person has stopped complaining because he has made that irrevocable decision.
If a person is saying to someone who is in a position of perceived authority, "I'm going to kill myself," imagining myself as that advocate, I am really stuck here. On the one hand, there is confidentiality. On the other hand, I am still a human being. When someone is crying out for help, I would hate to have a job that told me, "Nope, you can't do it, period." I like the way it is written, where the advocate "may" and the advocate "may to appropriate authorities" and so on. So let's leave it up to this Advocacy Commission --
Ms Carter: Discretion, yes.
Mr Tapping: -- which we are establishing to figure out the guidelines and the policies, rather than enshrining it in legislation.
Ms Carter: Once you have rigid guidelines you remove that element of responding to the individual situation.
Mr Tapping: The advocacy that has happened over the years has not been adequate in many ways. There is always a threat or a danger that once you establish something and formalize it, it will become bureaucratized. I would see that as a probability, just because we are dealing with human beings, but I would be very concerned to put it in the legislation. You could end up with a very bureaucratic style process of -- automatic; you do not have to think and you are not allowed to feel. I hope that after a few years the experiences of these advocates would probably modify, certainly codify, some of the things that would be done in the first few years.
Ms Carter: But they might get into trouble for breaching confidentiality.
Mr Tapping: So? If an advocate is not willing to get into trouble, an advocate is probably not quite doing the job the advocate should be doing. What was the first part of your question?
Ms Carter: If they find someone who cannot express their wishes but is obviously not being looked after properly, or abused in some way.
Mr Tapping: Oh, there is precedent for that. I mentioned the Cedar Glen inquest. That was exposed thanks to the psychiatric patient advocate office, which is explicitly prohibited from dealing with outpatients, discharged patients, as these people technically were. They were all from Queen Street and they were all parked off in an unincorporated village outside Orillia. The patient advocate office had no legal authority to do what it did, but it did it.
Ms Carter: So you do not want it put down in the legislation, but you do want it to happen on the judgement of the advocate.
Mr Tapping: I think I would like to turn this over.
Ms Roup: There are two parts to your question. The first part: We do not have a departure with the advocacy coalition. We are supporting both instructed and non-instructed advocacy. The second part of your question, which has to do with an advocate maintaining secrecy, is the part on which we have a departure but we are supporting non-instructed advocacy.
Ms Akande: I agree that if one person is at risk, it certainly demands that the system be addressed as it is being here. As a matter of fact, the O'Sullivan study commissioned by the Liberal government estimated that there were about 1 million Ontarians who would need this service, so it seems it is most appropriate.
It seems to me that the hook many people are hung up on is the difficulty of implementing the whole process, the fact that it does indeed take time, especially for groups of people in need of immediate service and response. Do you have any ways -- I know you have identified it as a difficulty for you -- do you have any quick suggestions towards ways that might be implemented more expeditiously?
Mr Tapping: Father O'Sullivan's report had an awfully large number of people who potentially could use at some times, in some ways, some advocacy. My personal preference is something more along the lines of the volunteer fire department, or you go where the need is the greatest and start there, right? I would hate to think of trying to set up something that was looking at having a million clients in two years' time. Let's look at places like Cedar Glen. We know there are hundreds of places. There was testimony at coroner's court from an adult protective services worker that, "Well, it was pretty bad but I have seen lots worse."
Ms Akande: Would it not be wise --
Mr Tapping: Let's go there. Let's focus on where the need is greatest, where there is -- and check your Hansard about questions to the minister. Check the databases from the press and the media. There are problems out there already that keep coming up at the level of coroner's court: life and death foulups. Let's focus in on that as a beginning. If this Advocacy Commission, as it is proposed it be constituted, is allowed to have the power to decide such things, I think that would arise out of the way the legislation is written now. In a way, in spite of the government money, it is almost a self-help model where the people who are most involved are going to be the ones right in the planning and execution of this.
The Chair: Ms Roup, Mr Tapping, on behalf of this committee I would like to thank you for taking the time out this morning and giving us your presentation.
MENTAL HEALTH CENTRE OF PENETANGUISHENE
The Chair: I would like to call forward our next presenter from the Mental Health Centre of Penetanguishene. Good morning. Just a reminder that you will be allowed a half-hour for your presentation; the committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each caucus. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Fleming: My name is Russ Fleming. I am a psychiatrist. I grew up in southwestern Ontario. I attended the University of Western Ontario, graduating first in honours science in 1965 and then in medicine in 1969. I have been a qualified practitioner of medicine in this province since 1970 and a qualified psychiatrist and a fellow of the Royal College of Physicians and Surgeons since 1975. I have worked for the past 18 years at the Mental Health Centre of Penetanguishene. I am currently the psychiatrist-in-chief there since 1989. I am by experience a forensic subspecialist.
I appreciate very much the opportunity to address the committee this morning. I apologize in advance because I am sure that some of what I am going to say you have already heard from previous presenters. I intend to focus on one specific area in Bill 109, that of prior wishes or instructions and the function of the Consent and Capacity Review Board in relation to that issue. I am the Fleming in Fleming v Reid and Fleming v Gallagher, which sounds disturbingly adversarial if you know that both Reid and Gallagher were patients under my care.
The Reid and Gallagher story can be found in detail in the Ontario Reports, third series, volume 4, September 1991. It details the decision of the Court of Appeal for Ontario from June 28, 1991, where section 35a and subclause 35(2)(b)(ii) of the Mental Health Act of Ontario are declared "inoperative in so far as the sections purport to empower the review board to authorize the psychiatric treatment of incompetent patients involuntarily confined in psychiatric facilities contrary to the refusal of the patient's substitute decision-maker to consent to such treatment on the basis of the patient's prior competent wishes."
In somewhat simpler terms what this appears to mean, at least for the present, is that once people suffering from schizophrenia have declared their opposition to treatment at a time when they were competent to do so, or at least apparently competent to do so, then they can never be treated again. This is particularly significant and I think tragic for an illness of such major proportions which usually has lifelong implications.
In addition to demonstrating that the result can be unsatisfactory, I also wish to give some indication of how complex and time consuming these proceedings can be. I am therefore going to provide you with some detail in regard to one of the cases in particular, that of Gallagher. I am in part borrowing from the Ontario Reports summary.
The story begins in the early part of 1987 when we had in our hospital, in the maximum security division, two patients, Reid and Gallagher. There is nothing really unusual about their clinical situations except to say that both had a major mental disorder. Both at that point had relapsed into illness, both were considered incompetent to consent to treatment, and neither had available a substitute consenter. Accordingly, review board treatment orders were applied for.
The initial treatment orders were obtained in early 1987 without particular difficulty. However, around this time, through means which remain unclear to me, both of these patients came to be represented by the same lawyer who undertook to defend their right not to be treated, and therefore to remain ill and incarcerated. Both of the treatment orders were therefore immediately appealed and no treatment could then be started.
Before the appeals could actually be heard, the 1987 amendments to the Mental Health Act came in at the end of June of that year, and we agreed to abandon the treatment orders and to start over under the new and altered rules. It took some time actually to figure out how these new procedures would work. I started again to work on the case of Reid in the fall of 1987. Without going into extensive detail, it took from then until April 1989 to actually undertake any treatment, at which time this patient had been continuously and floridly psychotic for more than 27 months. Even then, treatment was only able to be started on an interim order by a judge of the Supreme Court of Ontario after the patient's physical as well as mental condition began to deteriorate to a dangerous degree.
In the case of Gallagher, we did not attempt to further a treatment order until the summer of 1988, essentially because the lawyer indicated that our efforts would be fruitless in any event because any order obtained would simply be appealed. However, by the summer of 1988 the patient had regressed to such a degree that even his lawyer could apparently no longer communicate with him in any meaningful way. An application was made for a treatment order and an order for treatment with neuroleptic was provided for a period of three months.
Mr Gallagher's condition substantially improved during this time, but when the order ran out, he refused to continue treatment any further. A decision then had to be made as to whether or not we would apply for an extension of the treatment order. But, of course, by this time his lawyer had once again entered the scene, indicating that all possible efforts would be made to avoid him having any further treatment. Because I fully expected that he would relapse, and he insisted that he would not, we were able to reach an agreement with him to conduct a series of videotape interviews so that he could later review this for himself, because he in fact did not believe that he was ill or that he would relapse.
Over the next several weeks the patient underwent, as expected, a gradual deterioration and by February 1989 we were once again launched into an application for a treatment order. This was finally achieved but then immediately appealed, and the patient continued untreated. The appeal of Mr Gallagher's treatment order was finally heard in district court, along with that of Reid, on May 9, 1990.
In the meantime, we had sought an interim order for Mr Gallagher from Judge Tobias and this he had provided on April 4, 1990. However, with the handing down of his decision on May 9, this order no longer had any effect and treatment once again had to be delayed. However, a subsequent motion before Mr Justice Holden of the Supreme Court on June 22, 1990, restored this order.
The other side countered with a motion on July 11, 1990, to have this stopped, pending an actual appeal of the issue. This was dismissed by Associate Chief Justice Morden of the Court of Appeal. On September 4, 1990, a three-judge panel of the Court of Appeal dismissed the motion, set aside the June 22, 1990, order of Judge Holden. The treatment then was able to continue until the definitive decision upon the treatment order issued by the Court of Appeal, as I have said, on June 28, 1991. What this meant, of course, for Mr Gallagher is that his treatment had to be discontinued, and as on prior occasions, his mental state deteriorated. He remains at this moment chronically ill and within the maximum security unit.
There is, of course, one further disturbing detail. Because of the clear separation of matters of treatment from those of legal detention due to dangerousness, Mr Gallagher at this point appears to have inadvertently sentenced himself to indeterminate incarceration. Because of his mental state, he lacks the capacity to understand exactly how this has happened to him. He is presently subject to detention under a warrant of the Lieutenant Governor, and even if that detention were to be discontinued due to capping provisions contained in the Criminal Code amendments, Bill C-30, he would not be releasable in an untreated condition. Because of his potential for dangerous behaviour in the community, he would have to be detained subject to the civil commitment criteria contained in the Mental Health Act.
In retrospect, I think a compelling argument could be made that at some earlier time, when Mr Gallagher made his determination that he would refuse psychiatric treatment, he was not fully informed of the potential consequences of such a decision. Perhaps at that point the consequences could not even have been foreseen by anyone. Unfortunately Mr Gallagher was also at some earlier stage led to believe that changes in the law, particularly Bill C-30, would automatically effect his release.
His anger in that regard is understandably directed at those closest to him; that is, the clinical staff in charge of his day-to-day care. Those clinical staff, of course, being largely of sound mind, know to whom they should direct their anger, and that is to the legislators. Unfortunately the frustration and lowered staff morale which result are a chronic problem.
On a brighter side, there is a recommended solution contained in the Reid-Gallagher decision. Reading page 94 in the Ontario Reports, the third paragraph, we find the following wisdom from the Court of Appeal:
"In my view no objection can be taken to procedural requirements designed to determine more accurately the intended effect or scope of an incompetent patient's prior competent wishes or instructions. As the act now stands, the substitute consent-giver's decision must be governed by wishes which may range from an isolated or casual statement of refusal to reliable and informed instructions based on the patient's knowledge of the effect of the drug on him or her. Furthermore there may be questions as to the clarity or currency of the wishes, their applicability to the patient's present circumstances, and whether they have been revoked or revised by subsequent wishes or subsequently accepted treatment program. The resolution of questions of this nature is patently a matter for legislative action."
On page 95 the following:
"It is not for the court to rewrite the act and invest a tribunal with jurisdiction not given to it by the Legislature. Nor is it for the court to determine the procedure or criteria to be followed in making treatment decisions for mentally disabled patients. These are issues which involve governmental policy."
Within Bill 109 there is an opportunity for you, the current legislators, to resolve the problem of Mr Gallagher and others like him. It seems to me that when a decision to refuse treatment can have such grave ramifications, then it ought to be treated as having the same importance as decisions of informed consent. Then if a review panel decides that an individual had all the information available in regard to the benefits and also the consequences of not having treatment, and was capable of weighing that information, then we will be happy to live with the result. I hope there have already been some attempts at such a revision, and since I am not a lawyer I am not going to attempt to confuse you with my version of what that might be.
In conclusion, as one who has had some experience with complex legislation of this kind, I think there will be two overall results of these new bills which will be unfortunate. First of all, because of the complexity of the procedures, practitioners will first of all tend to ignore the rules and a remarkable number of patients or clients will be regarded as competent. The test which will be applied unofficially is the one frequently used with our current Mental Health Act: If the patient accepts the treatment, the patient is competent; and, folks, that is not the test.
The second and perhaps more unfortunate result will be that practitioners, if they have the option, will contrive to avoid those clients who are obviously incompetent, to save themselves the confusion and frustration of dealing with the process. The patients or clients, of course, will be the ultimate losers in that.
Finally, it seems to me that at a time when we are just beginning to come to grips with the extraordinary costs involved in the delivery of health care, it is disheartening to realize that we are about to spend an as-yet-undisclosed amount of money on a system which in reality will result in no demonstrable net benefit to the clientele. I wonder how much more we could have accomplished if we had applied the same money to schizophrenia research.
I am going to add one more comment that arises out of an issue or two that were raised here. This ongoing debate between the medical model and the psychiatric power on the one hand, and anti-psychiatry and patients' rights movements on the other is non-productive. If you want to find out, if this book has not been recommended to you, read this: It analyses very clearly what the debate is about and it also says there is no future in continuing the debate. What we have to do is forge an agreement by partisan consensus about what ought to be done.
In that regard, people on the psychiatry side of things have to acknowledge -- and we do, I think, for the most part -- that there have been abuses in the past and there are abuses now and that those abuses do not finally get solved by advocacy. They get resolved by good, solid, sensitive management of the system by systems managers, and that is one of the great deficits we have had. We have not had people in the system who could actually manage, for example, a psychiatric hospital in a way that made sure that abuses, at least, were minimized as far as they can be.
On the other hand, we have to reach out to the people who appear to be preoccupied with those abuses and preoccupied with legal and power issues, and keep the dialogue going in terms of what will really help people in the long run.
Frankly, with the experience I have had with the Mental Health Act of Ontario, and as I listened to the discussion this morning, I think the rational thing to do would be not to scrap these bills, but to take a step back from them and have a look at the Mental Health Act, amend it and make it work, because it does not work at the moment. Having done that, we would have a clear experience on which we could then go forward, because some of the principles contained in this legislation are indeed very important and ought to be carried through.
Mr Mancini: I have a very short question before our critic asks her questions. When these two gentlemen you were referring to were able to receive treatment, what kind of treatment were they given?
Dr Fleming: They were treated with medication, neuroleptics specific for schizophrenia and they both improved.
Mr Mancini: Anything else?
Dr Fleming: They were offered all the ancillary things that we usually offer in a hospital: supportive psychotherapy and counselling, participation in various programs, depending on their level of ability to participate, all of which helps as well.
Mr Mancini: So it was basically the drugs they objected to?
Dr Fleming: I guess it is the drugs. It is also an issue of being locked in a situation which they would rather be out of, feeling oppressed by that, features of their illness in which their suspicion and anger are very evident but not really connected with anything in reality. As far as the medications are concerned --
Mr Mancini: You do not think maybe they were fighting something else that was going on?
Dr Fleming: I am sorry?
Mr Mancini: You do not think maybe this was a way of fighting something else that was going on or bothering them? This was the only way to do it?
Dr Fleming: Well, I lived with these particular individuals on a week-by-week basis. I had a lot of time with them. These people had schizophrenia. Their cognitive abilities were seriously impaired by what was clearly an illness, and there were lots of opportunities to have those discussions with them. When they were on medications, and they were improving in terms of acute symptoms, the discussions I had with them on those occasions were pretty rational.
In the one situation, we had a series of videotaped interviews with Mr Gallagher; every week we would get the camera set up and have our videotape session. The purpose of that was to demonstrate to him, finally, that in spite of all the other things we were attempting to do for him, without the medication he deteriorated. We predicted that; we predicted it again; it happened again. I have been through that with other patients. That is the point that has to be made. There are some people who are really sick, and as a result of the sickness, they are really disturbed and really dangerous. No question about that. They deserve just as much appropriate attention and clinical care as anyone else, and that is what we strive to provide.
Mrs Sullivan: I appreciate your being here, because I think all of us have read about these cases in the past, and it is interesting to have you before the committee, having actually experienced the situation. We understand from other presentations -- I think of one from R. A. Stradiotto and one from Dan Ferguson, who spoke about the effects of this legislation indeed complicating and adding to potential litigation. Earlier today, the Ontario Friends of Schizophrenics suggested that a continuing power of attorney may be an answer with consequent and necessary alterations to the Mental Health Act, and may be a way to ensure that appropriate consent is given by the patient while the patient is in a lucid or coherent state, when that patient can understand not only the course of treatment but the risks attached to the treatment and the risks of refusing the treatment.
Do you concur with that proposal, and if we go back to the two cases you have illustrated for us today, do you think if that had been legislated at the time there would have been a difference in approach in dealing with those two patients and indeed a difference in the outcomes for those patients?
Dr Fleming: Yes, I think in principle that would be helpful. You cannot, however, rely on a substantial number of families or individuals to really undertake that sort of process. The more I engage in these discussions and the more I wrestle with our current rules, particularly the Mental Health Act, the more I wonder if even somebody like me personally ought to put down somewhere now how I should be handled when I get my profound depression and when I go crazy, because do you know what my fear is about our current system? My fear is that I will be handled badly by it. If I became paranoid and resistant to treatment when I was clearly ill, I would hope that my wife would give the consent for what is required for my care. But if I did not have a wife or I did not have anybody else to take charge, I can assure you that I would know what lawyers to get and how to use the current system and I would never have treatment, and that would be, I think, a tragedy.
That is what I think is very wrong with the way we are currently approaching this. There are people who need treatment who do not get it when they should, because of the preoccupation with following legal rules. I am perfectly in favour of having legal rules to follow. I am also in favour of making sure that people follow them. At the moment, they are not. I do not want to go into the examples of that, but people do not follow the rules of the Mental Health Act right now. In the vast majority of general hospital units in this province they do not follow the rules.
Mr Sterling: I assume in your institution you have an advocate now. How is that working out?
Dr Fleming: It is working out very well at the moment, but it has taken eight years to reach the point we are at now. The advocacy system goes back to 1983.
Mr Sterling: Yes.
Dr Fleming: The first advocates were chosen specifically because of their hard-nosed, anti-psychiatry basis. They came into the system to fight with us, so we fought with them. I fought with them, because I thought that was what the game was at that point. Things mellowed. I have mellowed to some degree because I do not fight with them any more; there is no future in that.
I think the job of being an advocate is a lot more complex than people first understood it to be. The job of being an advocate is not to be an adversary to the system; it is to be a helpful, critical, but constructively critical facilitator, and one of the people we have now particularly is the best one we have ever had. He does not back away from issues, but he also does not come into your office and cause you annoyance when you have 18 other things on your plate, just because he has got some minor point to make.
Mr Sterling: I do not know if you have looked in any detail at Bill 74, but one of the concerns I have is that it is built into the legislation that it is partisan. The advocacy groups told me that in particular and they support that. I guess one concern I have with regard to the advocacy bill is that if there is a complaint from a health care giver like yourself or a complaint from a parent or a close person who is a friend or whatever of a patient, there is nowhere to go. If an advocate is stepping out of line or is not properly trained, there is no complaint procedure within Bill 74 to deal with that.
Dr Fleming: I have not looked at that carefully, but that would be of concern, as I have said. I think being an advocate is a very complex job which has legal and clinical implications, and people in that job are not going to do it perfectly either. It seems to me there is something wrong with a system where in all the other clinical disciplines, from medicine through nursing to occupational therapist through the whole list, the vast majority have a licensing body to whom patients can complain about the best medical practitioner in the system, if they choose to complain, and that complaint will be followed up on. Why would we then give another group of people the kind of power this advocacy system would provide without some reasonable checks and balances on how they conduct their operations?
Mr Sterling: On page 14 of your brief you say, "It seems to me that when a decision to refuse treatment" -- this is under Bill 109 -- "can have such grave ramifications, then it ought to be treated as having the same importance as decisions of informed consent." Then you go on to talk about the review panel dealing with those two issues. Are you suggesting that the health care provider on the spot make that decision and then the decision is reviewed by the panel, or are you suggesting that the treatment be delayed until the panel reviews the situation?
Dr Fleming: The treatment would be delayed, there is no question about that, but if you take the situation of Gallagher, because that is what this is about, all I want to be able to do now is reopen the issue with a review board and examine at what point in the history the decision was made by him that he would not have treatment, and have the review board have the power to examine what information he had. What was his capacity, as far as we could tell at that point, to make a rational judgement about it?
The reason you arrive at the stage of making a review board application is that all other consenters have declined to provide consent, and the last of those of course is the office of the official guardian within the current rules, and the official guardian's office will give you consent so long as it can find no other evidence, not the slightest shred of evidence, that there was a prior wish when the patient was competent. As soon as they find the slightest indication that there was a prior wish, and it can be as simple as a single line in a clinical record or a single statement on some occasion, then they will not give you consent because there is a prior wish. In the previous system, you could still have the review board override that by providing a consent.
What this decision has done is take that away, and there has to be some redress of that. A review board would be the logical group, it seems to me, to have the power to re-examine that issue retrospectively, and if it determines that the person was clearly competent and clearly decided he did not want this sort of treatment, then that is fine; we live with that. But I do not think, frankly, in the case of Gallagher that there was anywhere near a proper opportunity for him to really look at that issue.
The other thing of course is that in an illness like schizophrenia, where one of the features is that people do not realize they have it and they remain uninsightful, sometimes for their entire life -- they just do not believe there is anything wrong with them -- a fairly compelling argument can be made that they may not be competent from the first moment the illness onsets.
Mr Wessenger: I would just like to ask you a question. Does the Consent to Treatment Act make any change with respect to the principles that are presently in the Mental Health Act, or is it basically consistent with --
Dr Fleming: It is basically the same. I have not read it in detail lately, but it tidied up one thing that is a problem in the Mental Health Act, and that is the issue of applications for review of competency. In the new rules, there will be a limitation on when a patient can actually reapply once a finding of incompetency has been made. What some of our patients did was apply every week until we kind of said, "Wait a minute, we just had a hearing last week and nothing's really changed," and the review board, in its wisdom, said: "Yes, this does appear to abuse our process, so we won't hold a hearing right now. Apply again after a while if you think there's some change in your capacity." That was a flaw in the Mental Health Act and that has been fixed.
Mr Wessenger: This will be an improvement then.
Dr Fleming: Yes.
Mr Wessenger: In the question of prior wishes, it has been suggested sometimes by certain groups that a prevalidated power of attorney would be useful. Would you find that useful in your circumstances?
Dr Fleming: Yes, I think so, in some cases.
Ms Carter: Dr Fleming, it seems from what you said that in the case of Reid and Gallagher, certainly the improvement resulting from medication was dramatic.
Dr Fleming: Yes.
Ms Carter: So obviously medication does help some people considerably, but are there some patients who are not helped by medicines in the same way?
Dr Fleming: Yes. It is not a large number, but there are some people with schizophrenia who do not respond well to anything. In fact, some do not respond at all. Those people we manage in hospital, if we are required to, by whatever means we need, and the nursing staff can in fact be quite creative in terms of finding ways to live with those individuals in a reasonably humane and amicable way. It is impressive sometimes how well people can be managed even though they are absolutely out of touch.
The difficulty I have encountered -- and I have been through this with other patients -- is that some patients, as they are working on the issue of the illness and the fact that they have it, need to test and retest the issue of medication and whether they will relapse without it. I have had patients where we have gone through the process as much as four times. They are in a secure environment. They say: "I realize I'm pretty well now. I'm on this medication. I'd like to stop it and see what happens." I say, "Well, it's a safe environment; we stop."
Over a period of weeks or months they relapse, we put them back on, they come back to a stage of reasonable wellness, and I say, "You know, it looks as though it happened again." "Well, maybe that was a fluke. I'd like to try it one more time." We go off again; they relapse again. This is the process of working through with someone who has this sort of problem, and those patients all finally say, "I don't like the side-effects and I don't like some of the things it does to me, but if we can keep the dose to a minimal level and minimize the side-effects with the side-effect medication, I guess it's the best choice I have, because it is not a perfect world," and away they go, and they disappear back into the world.
Ms Carter: Could there not be some patients who find the subjective effects of medication so unpleasant or overwhelming that they really have a basis for saying that they would prefer not to be on medication?
Dr Fleming: Yes. It is an individually variable thing. Some people are very sensitive to medications. What can be done then is to try other medications, because these days we have some drugs in which the side-effect problem is much less acute, drugs like pimozide, which is said to have much less in the way of the traditional side-effects. The current wonder drug being much discussed, clozapine, is said to be a better drug in terms of side-effects. It is also, interestingly, a drug that is said to be effective in about one third of that group which is completely unresponsive or intractable in terms of the other drugs, and of course what the drug experts tell us is that clozapine is just the first of a series of other drugs that will be developed over the next few years which will have an even better profile in terms of side-effects and not the risks of things like agranulocytosis that is presented with clozapine.
I think it is really unfortunate to be, on the one hand, building a set of rules that may prevent some patients -- my guy Gallagher cannot get treated now. He cannot get clozapine. He cannot really get anything that will actually help him. In what other circumstance would we accept that someone is incarcerated for five or six years in a maximum security setting and say, "Well, I guess that's the way the world is"?
Mr Sterling: Mr Chair, with your indulgence, could I just ask, in Penetanguishene, what percentage of the residents there would be suffering from schizophrenia versus other disorders?
Dr Fleming: Two thirds to three quarters would have a diagnosis of schizophrenia in the maximum security unit, I guess.
Mr Sterling: And in other institutions in the province, do you what the figures would be there?
Dr Fleming: It would be a lesser percentage, but it is a high percentage. Schizophrenia is a very common illness, relatively speaking; 1% of the population through all cultures at some point in their life will have at least one acute schizophrenic form episode. That makes it a pretty common problem.
The Acting Chair (Mr Poirier): Dr Fleming, on behalf of all of us, thank you very much for coming forward. This committee stands adjourned until 1:30.
The committee recessed at 1216.
The committee resumed at 1350.
HEALTH SCIENCES CENTRE, UNIVERSITY OF WESTERN ONTARIO
The Chair: I call this meeting to order. I would like to call forward our next presenter, Dr Bessie Borwein. Good afternoon. I would just remind you that you will be allowed 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 from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Borwein: Thank you. First I would like to say how much I appreciate the process that is in place here today and to thank you for the opportunity to make a presentation. I am Dr Bessie Borwein. I am here to address you particularly about matters pertaining to research and somewhat about other things.
I have three roles in my work. I am the associate dean, research, for the faculty of medicine, I chair the university's review board for all health research involving human subjects and I also chair the university-wide biosafety committee. My professional appointment is as an associate professor of anatomy with a cross-appointment in ophthalmology.
Our main concern is with section 15, paragraph 1, of Bill 109, and there are also references that pertain in Bill 108, subsections 47(6) and 56(5). The wording in Bill 109 says, "Nothing in this act authorizes a health practitioner to perform any of the following procedures on a person who is incapable with respect to the procedure," and paragraph 1 describes this as, "A procedure whose primary purpose is research." The statement is reinforced by item 6 in the explanatory notes, which refers to "research procedures, non-therapeutic sterilization and the removal of tissue for transplants." The latter two procedures are illegal. Research is far from illegal, yet research procedures have been associated with these, putting research into, as you might say, illegal company.
Since nothing in the act authorizes a research procedure, the statement is very vulnerable to interpretation as prohibiting, especially in light of the E. (Mrs) v. Eve decision of the Supreme Court of Canada in 1986, which was rapidly generalized in several domains to apply to all non-therapeutic research on vulnerable populations.
I would like to take some time here to describe to you the process of ethical review at the University of Western Ontario. I think we are fairly unique in that the entire community in London has the ethical review for health sciences pass through one review board. That is all the hospitals and the university and any of the organizations in the area who request us to do it for courtesy reasons.
Our review board permits research on vulnerable populations, but only under very stringent conditions. I might like to add as an aside that the very process of research, the sophistication of it, its concerns with the social and ethical counterparts and issues have dramatically become more sophisticated in the last 30 or 40 or 50 years, but almost all of it without legislation. It has grown up through process, and much of what we do is under guidelines and codes.
We had decided, after a lot of discussion, that research on vulnerable populations under certain conditions had to proceed, because to prohibit all such research was to withhold from those populations the possibility of the alleviation of their illnesses and disabilities, which we consider to be unethical. Should such a prohibition on all research with those who cannot themselves give informed consent ever be enforced, the research and the researchers would indeed move to other provinces and other countries where this would be permitted, and of course in some countries the ethical research standards are far below those in Canada.
The position adopted by the review board was publicly described and discussed at length at a conference of the National Council on Bioethics in Human Research in Canada four years ago. There is much greater value in guidelines over legislation, because guidelines allow for greater flexibility and a more rapid evolution, drawing on experience and evolving societal needs and standards, and there is a more rapid opportunity to adapt, learning from different ways of doing things. Often in ethical issues there is not only one right way to proceed. After due investigation of the issues and considered deliberations, informed judgement is brought to bear on the decision that reasonable people can agree with. The crucial elements in making ethical decisions include these careful deliberations and the consideration of various opinions.
In our society there is little moral absolutism. Lady Mary Warnock, mistress of Girton College, Cambridge, was chairman of the Committee of Enquiry into Human Fertilization and Embryology in Britain and wrote the much-respected Warnock report, apropos which I thought she said two very important things: One is that the law should beware of following the ideals of extremists and the other is the injunction to not allow moral fantasy to take precedence over realism.
I have appended to my submission the documents which are guidelines that are in use at the university. We do exactly the same kind of review for Madame Vanier Children's Services, the Children's Psychiatric Research Institute, the Thames Valley Children's Treatment Centre and any other group that so requests it of us. The primary mandate in all our reviews is exactly the same: It is the protection of the participants in research.
I draw your attention to particular sections of our guidelines, which deal with the very difficult problems of principles of consent, informed consent, exceptions to prior informed consent, subjects who are incapable of giving informed consent, research on children and research involving incompetent adults, all of which we have addressed in great detail -- not ourselves alone; we have drawn clearly on world expertise on this as well. I submit this information because it demonstrates the restrictive and stringent approach taken without the intervention of specific legislation and without recourse to setting up of an expensive and bureaucratic paid advocates approach.
The second addendum is the report prepared by us for the site visit of the three people who were appointed by the national council on bioethics to visit our university and assess our operation. They are doing these site visits across Canada. That document summarizes how we work and how effective, careful and onerous is the operation. It is also very economical, because it works very predominantly on volunteer labour. Included in that addendum is a letter sent to all the deans and chairmen of departments within the university, by the vice-provost health sciences and myself as chairman of the review board. I would like to read to you part of it. The letter reads:
"Service on the review board for health sciences research involving human subjects demands a very substantial commitment of time. The board meets for a minimum of three hours once every two weeks during the year.... Every member of the board (there are 16) is required to read carefully an average of 20 protocols in preparation for each meeting." It requires up to about six hours of reading time. "At the time of grant submission deadlines, the number of protocols reviewed at one meeting might number closer to 30. In addition, members accept assignments from the board to discuss protocol problems with researchers and to review drug company submissions and any other pertinent documents.
"The workload makes such a heavy demand on time and contributes so importantly to the integrity of research, the maintenance of research standards and the reputation of the university that special recognition should be accorded to those who serve on the board. When they are assessed for promotion and tenure and for merit, it is urged that services on the board be regarded as a very significant contribution to research and service in the university and the appropriate recognition be accorded."
In that context, I would like to tell you that at the moment every single one of the 16 members of the board has an alternate, so that somebody must be present at each meeting. We have a full complement. Four of the people presently serving on the board are not part of the university, and there are numbers of people on the board who are not scientists and not related to the health sciences. They come from other areas of the university.
I have also appended the protocol form on which submissions must be submitted. No other form is acceptable and no research can commence until writing and approval is granted.
Again I would like to emphasize that our review board functions very well. We got a very high praise from the site-visiting team. We do it without legislation. I think it is important that these ways in which we function should be made known, because a good deal of anxieties often arise from inadequate information or misinformation.
I would specifically like to address the value of research on vulnerable populations, especially those who cannot themselves give informed consent. To proscribe or even very seriously curtail research on these people, we believe, is unethical. It discriminates against them with regard to advances in the prevention, control, alleviation, treatment and cure of conditions that afflict them, and which advances are available to those who can give consent. It would also potentially expose these vulnerable populations to the introduction of treatments that have been inadequately tried and tested.
Some of the advances that would not have been possible without research on people who cannot themselves give informed consent and that have been of great benefit to them and other constituencies to which they belong include, for example, childhood leukaemias, many of which can now be cured. That is a fairly recent advance that would not have been possible without the ability to do research on children. We have treatments for the optimum alleviation of asthma; improved anaesthesia; far better treatment for the head injured, the great majority of whom are young people; the understanding of drug reactions, which are different in infants, children and adults and need careful clinical evaluations; treatment for neurological conditions; strategies for improving the conditions of mental retardation, and the treatment of cystic fibrosis, the single biggest genetic disease in Caucasian populations. There are new treatments for the control of juvenile diabetes. In addition, all the neurological degenerative diseases which are becoming more predominant in our society because of an aging population, such as the muscular neuropathies, amyotrophic lateral sclerosis, Parkinson's and Alzheimer's dementia, the dementia associated with AIDS, and schizophrenia are all desperately in need of more research.
I would like to address you from personal experience on the subject of Alzheimer's. My mother, a patient, gentle, polite woman, suffered a most terrible deterioration through 10 years of Alzheimer's disease. It transformed her into somebody who would hit other people and say outrageous things to them. It was a relentless disease. She did get good treatment in a nursing home in London. Of course, no nursing home and no treatment is good enough for your own mother, but given the circumstances, she was well treated there. But the disease is so relentless that nothing you do alleviates the progress of that illness. The only hope is research. The only hope is drugs to control it and the understanding to prevent it.
I append a letter from an eminent psychiatrist in London, Dr Harold Merskey, an internationally known authority in the field of studies of pain. His letter deals specifically with some of the mentally disabling conditions. In Ontario there is significant research on Alzheimer's disease and schizophrenia. We feel sure that it is not the deliberate intention of the government to suppress this research, but that would or could or might happen if section 15, paragraph 1, were enacted.
I would like to add the strong support of the UWO faculty of medicine for Dr Lowy's submission on February 12 and support his concerns about portions of Bills 74, 108 and 109, and also those of Dr Bernard Dickens and Dr Eric Meslin of the same date. I particularly wish to quote from Dr Lowy on pages 3 and 4, where he says that "...unfortunately in our view these bills as drafted contain serious shortcomings. These are of such magnitude that, unless they are corrected, there is a risk that the legislation which is so well intended may do more harm than good."
I would also like to, in a context a little bit away from research but certainly impinging on it, quote from the submission made to you by my friend in London, Ontario, Mrs Pat Chefurka, a previous president of the NDP in Ontario. Again, I would like to quote from her submission: "The freedom to be insane is an illusory freedom, a cruel hoax perpetrated on those who cannot think clearly by those who will not think clearly."
I can only end by saying that in the difficult area of ethics and morality, there is no absolutism, and there will never be perfection in a multifaceted society. But we can ask that the most careful consideration be given, that well-intentioned people dwell on this and that we use the opportunities of the family structure to participate in all these decisions, because imperfect as it is, like democracy, it still is the best institution we have for the protection of people.
On behalf of the faculty of medicine and the review board for health sciences research involving human subjects at the University of Western Ontario, I request that paragraph 1 of section 15 in Bill 109 and the equivalent clauses in the other bill be deleted. I want to thank you for this opportunity.
The Chair: We have five minutes for each caucus.
Mrs Sullivan: I am particularly appreciative of this recommendation and your intervention today. I think this is one area I have been concerned about from the beginning in relationship to these bills. I look at teaching hospitals, advances in medical science and treatment of patients, with the consent as it has been done in the past of either the patient or his or her representative, whether it is family or friends, and see significant advances. Then I also talk to people who, by example, now deal with Alzheimer's cases and who say that if the bill is carried out in the way that it is written, Alzheimer's research would be set back by 20 years, and it would be incumbent upon us in our age group to make a decision now to allow the research to take place some 20 years down the line, assuming that a certain percentage of us will be Alzheimer's patients at some point.
The protocols which are used at the University of Western Ontario and in other faculties of medicine and teaching hospitals have been developed over a period of time through legal medical ethics committees. Under the common law now, do your practitioners feel they are legally protected in cases where there is not a consent either from the patient or from next of kin or a patient's representative?
Dr Borwein: I think you have touched on a very interesting and important area. We always have two legal representatives on our review board. Since I have been with the board, nearly five years, every decision we have taken has been reached by consensus. The advice given by the lawyers is excellent advice, but it does tend to be legalistic, and we listen very carefully.
But on the other hand, there are some things we would not do if we were only concerned about protecting ourselves legally. We believe that would be unethical. Again, like in many different difficult areas, we have to weigh and balance. We have to say, "Yes, we are taking a small risk, but we are taking it." If you have a patient brought in who clearly cannot give consent and whose next of kin is not there with him or he does not have a next of kin, and yet you know that the evaluation you are doing has the potential of doing good for that patient, will you deprive him of it?
We do not allow any research in which nobody gives consent, but we do extend the range of those parties who may give surrogate consent pro tem because we ask for consent to be acquired from the next of kin or the patients themselves within 24 hours, and that surrogate consent must be taken in the presence of other people so it can be validated. But, yes, you are right, we cannot always be 100% legally protected; we know that.
Mrs Sullivan: There is some misunderstanding, and certainly my initial reading was a misunderstanding, of what is in this bill in terms of the tissue gifts. My understanding now is that paragraph 3 of section 15 is in fact the current practice and so on.
Another area, however, that I have concern in relates to consent in situations where there would be organ donations, whether for transplants or to participate, which may certainly be involved in a research program but may not be as well. I think Mr Fram will remember that at the beginning I raised that issue, and we were told that Dr Weisstub was conducting another investigation in this area and that we would see substantial and substantive amendments put forward as these bills were being considered.
That was the last time we heard anything about this entire issue of either research or tissue gifts. I hope that perhaps the parliamentary assistant, the minister or Dr Fram will be coming forward at some point with some further clarification and that there will be an appropriate consultative period so that those who are involved in the area will also have a chance to contribute to the process and a drafting of appropriate legislation.
Dr Borwein: There are differences between the biological understanding of organs and organs as understood in some of the -- because blood is an organ of the body and blood is donated. We freely donate blood. However, we do not allow, I think wisely, any organ donations from living people, but we do allow people to make a gift of a kidney or a gift of bone marrow to a brother, for example. We have very difficult areas in which we weigh the potential for good and the lack of harm. It is constantly our concern that the harm done must be very little and that the benefit must be very great when you weigh these things.
Mrs Sullivan: Just for the record, Mr Chair: I gave Mr Fram the wrong title. I know he would not want that to remain in the record.
Mr Fram: I was honoured.
Mr J. Wilson: Thank you very much for taking the time to appear today, Dr Borwein. You have made the point very clear that we need to address section 15, dealing with research. If I may say, and not to patronize you, but you have made it as clear as Dr Lowy and some of the other distinguished company you mentioned.
I made the point, on behalf of my party at the time when Dr Lowy appeared before the committee, that we would be introducing an amendment to this section dealing with research, because we agree with your comments, if the government does not clear that up with its set of amendments. We hear rumours that they are coming forward at any time.
I would reiterate to the government members, and to the parliamentary assistants if they are listening, that if you bring your amendments forward sooner rather than later we would not have to keep repeating these arguments and distinguished people like our present witness would not have to take time out of their busy schedules to keep hammering home the point. I want to make that point.
I just noticed in your brief, having gone through it, that you did an excellent job of making the point on research. But it kind of sticks out, the clipping you provided, "Patient Rights Have Eroded Ability to Treat." I know it is not something you wanted to really deal with, because I understand you want to make the point about research, which you have done, but do you have any comments on that? It is a very interesting article.
Dr Borwein: Yes, I do. I do believe patients have extraordinary rights. I think people have the right to be well informed before they consent to any treatment.
I labour a great deal under what the extent is of informed consent. How informed is informed consent? I talk to you about this as one who has to sit on these boards. I have to evaluate the letters of information that go out to the patients. There is no limit to the extent of the information you can give for informed consent. We could tell every patient that one out of a million persons succumbs to this particular thing and one out of a million succumbs to that. That would clearly be pointless because the chances are very small. Nevertheless, where do you draw the line between what is a small chance and what are the usual complications?
We do always bring the element of judgement to bear on that business, but I do not think anybody should be in a position of having treatment to which he or she has not consented. There must be reasonable declaration of the treatment, the pros and cons of the treatment, the alternative treatments and the consequences of not having treatment. But we are dealing here particularly, I imagine, with people who cannot themselves give consent to treatment.
Mr J. Wilson: Yes.
Dr Borwein: There again, from my personal role simply as a citizen of the province, somebody who has had to deal with relatives who are mentally retarded, my mother who had Alzheimer's, people who cannot give consent, I think certain kinds of illnesses and disabilities are extremely cruel to the person who suffers them. They also can be extremely destructive to the people who have to work with them. I think there is a place for trusting, were it is reasonable to do that, the members of a family to give consent to treatment when the person is not of a mind to be able to make those decisions. Otherwise we have large numbers of people who are free to suffer. We donate to them the freedom to suffer if we do not take some other steps.
Mr J. Wilson: That is an excellent point, because we had brought to our attention just before lunchtime by a doctor from Penetanguishine the case of Gallagher, I guess it was, where the courts continued to rule in favour of a schizophrenic patient who continually refuses to accept any treatment whatsoever. The consequence is that this person is indefinitely incarcerated, perhaps because of his inability to understand that if he does not get treatment he is never going to get out and he is never going to get better.
At some point in the system -- because the way the system is now it appears the courts rule in favour of patient rights absolutely. Should there be an override and who should take that decision, the care giver designated previously by the patient?
Dr Borwein: I think it is very difficult to designate a care giver previously because, unfortunately, schizophrenia often hits wonderful young people when they are about 18 or 20 years old. There is no way at 12 they are going to say, "Should I develop schizophrenia, I want my mother to take decisions for me." That is an impossible scenario.
I think, in the absence of any evidence to the contrary, we have to trust the families. There may well be places where you would not, and you might have good reasons for doing that, and I am sure we have the wit to deal with it. But by and large, I can only repeat what I think Churchill said of democracy, "It is not a very good system but the very best we have." We do not know anything that works better than a family, for all its shortcomings and deficits. I think it is tragic to downgrade the status, the position and the importance of family in any way. I would like to see that promoted, bearing in mind there are exceptions that will need special attention.
Mr J. Wilson: On behalf of my colleagues and myself, thank you very much.
Mr Wessenger: Thank you, Dr Borwein. I would just like some clarification with respect to your position concerning treatment. First of all, you indicated very clearly that you thought there should be informed consent. However, at the same time you indicate there should be permitted research with respect to incapable people and children. Is that correct?
Dr Borwein: Yes.
Mr Wessenger: So in effect it is only informed consent with respect to the capable people.
Dr Borwein: I think we are saying that if you do not allow any research on people who cannot themselves give consent, you are discriminating against them and you are permitting them to suffer in ways that you would not allow people who can give consent to suffer. So what we are saying is, yes, you have an exceptional circumstance there and because we are human beings and we can bring judgement to bear -- we may not always be right but we try to be right -- I think it is necessary under very stringent conditions to allow surrogate consent. You allow that all the time, for example, when you take your child to the doctor. Your child does not consent to treatment. You consent on behalf of your child to treatment.
There is an analogous position in research except that we would be much more stringent. Our guidelines say, for example, that no matter what the parent says, if the child demurs you may not do research on the child. That is not always the case with medical treatment.
Mr Wessenger: Just to follow that up, do you accept that you can work within the existing common law with respect to the matter of the restrictions on research?
Dr Borwein: We have been working up to now under the common law and under special international guidelines and official guidelines that have been established by semistatutory bodies like the Medical Research Council of Canada, the National Council of Bioethics and so on, yes. We think what has helped us a great deal in not having it under specific legislation is that we have evolved into a better and better system. We have learned from experience where to be more stringent, where to be more flexible. We have learned from others' experience how to improve it. We are busy rewriting our whole protocol form precisely on the basis of that, very much quicker than if you have to go through a whole legal process to do that.
Mr Wessenger: Of course, you may be aware that statements -- I understand you have read some of the comments that have been put on the record that this legislation is not intended in any way to affect the common law position with respect to research.
Dr Borwein: But we are troubled that it is there, and what we have seen from experience is that the interpretation accorded by you personally or people here is one thing. It is quite another thing when it is written down in law and churns into the law courts and is subject to all kinds of interpretations. That concerns us deeply, and I guess that is why we are asking because I have a sense that it is not the government's intent to suppress research in this province. So we are asking that that be removed so there can be no debate about it.
Mr Wessenger: Just one further comment. Is it fair to say that only therapeutic research is done on incapable people and children?
Dr Borwein: What do you understand by therapeutic research?
Mr Wessenger: Therapeutic research is when you look at the risk/benefit with respect to the patient and there is a balance in favour of the benefit over the risk.
Dr Borwein: We would not use the term in that sense. We always look at the risk/benefit no matter what it is. The risk/benefit has to be such that the benefit is great either for that constituency of persons or for that person and the risk very small. That is an overriding consideration in all research. It does not pertain particularly to therapeutic research.
We understand therapeutic research as being something different than, for example, prevention. In other words, in regard to a treatment as opposed to let's say a prevention, a vaccine would be different from a drug which you are using to alleviate a particular condition.
Mr Wessenger: We have been told by Professor Dickens that under the common law therapeutic research is permitted on incapable persons, but non-therapeutic research is not permitted.
Dr Borwein: I bow to Dr Dickens's great authority in this field but I think that we should have it broader than that. How would you want to prevent, for example, the development of a vaccine that could protect people from schizophrenia? That would not be a therapeutic intervention, that would be a preventive measure.
Mr Wessenger: I assume that you will be making representations to the Weisstub committee?
Dr Borwein: I would be glad to.
The Chair: On behalf of this committee, I would like to thank you for taking the time out this afternoon to come and give us your presentation.
Dr Borwein: And I would like to thank you for the opportunity to do it.
The Chair: I would like to call forward our next presenter from the Chedoke-McMaster Hospitals. As you know, you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow us some time for questions and comments from each of the caucuses. As soon as you are comfortable, please identify yourself for the record and then proceed.
Ms Hamilton Wilson: It is pleasure to be here. My name is Jane Hamilton Wilson and I am the family educator on the psychotic disorders team at McMaster medical centre, Chedoke-McMaster Hospitals. I am a nurse with more than 16 years' experience working directly with individuals with schizophrenia and members of their families. I am also a very new member of the professional advisory board of the Ontario Friends of Schizophrenics.
This is my colleague, Heather Hobbs, a nurse, also with many years' experience working directly with individuals with schizophrenia and current coordinator of this multidisciplinary team at Chedoke-McMaster Hospitals.
The work of both of us, on the psychotic disorders team, is a hospital-based outpatient service, specializing in the assessment and treatment of persons with psychotic disorders. A large number of our clients have schizophrenia and continue to live at home with their families. Members of our team work in active partnership with clients and their families. Families are considered an essential member of the treatment team.
On behalf of all members of the combined clinical and research team, the names of which are on the front of our brief, we are here today to voice our concerns about the proposed legislation, Bills 74, 108, 109 and 110.
I should mention that I do not intend to read the entire brief. I will be speaking for just a short time this afternoon, hoping to summarize the points that have been made in the longer version within the brief.
Taken together, these acts will significantly change the future care and treatment of persons with schizophrenia. These changes have the potential to make it even more difficult to respond to the urgent needs of those acutely psychotic individuals and the needs of their families.
Statistics suggest that up to 60% of the chronically mentally ill live with their families. These families are in a position of primary care givers. In the past, families were thought to cause mental illness, but we now have evidence that some families can positively affect the course and prognosis of established disease. In fact -- again, lots of evidence through research -- some of the best possible treatment outcomes are gleaned from the creation of a therapeutic partnership between consumers, families and professionals.
Regrettably, the proposed legislation, specifically Bill 74, fails to provide support for family-centred practice models, a model which is certainly currently in place at Chedoke-McMaster Hospitals. The voices of family members at decision-making levels have been excluded. We hear a lot of talk about a consumer-driven mental health care system. We would personally welcome such a system if, and only if, it means a system driven by the needs of all those with mental illness, needs that can best be ascertained by a full partnership of consumers, families and service providers.
I would ask you just to imagine for a moment how frightening it might be to see your own son or daughter lose touch with reality. You notice the beginning signs of psychosis and your relative gradually withdraws from the rest of the family. He or she perhaps refuses to eat, convinced that the food you have prepared is poisoned. Your relative stops taking anti-psychotic medication, believing that it too is poison. As the psychosis increases, you watch helplessly as your ill adult child prepares to leave home, too paranoid to trust even you, preferring instead a life on the streets.
You know from experience that your relative needs help, but you are powerless to do anything. This scenario is one that frequently faces our clients and their families. The stress is enormous and the burden is severe. In this situation, the ill person surely has the right and the freedom to leave home. He also has the right and the freedom to refuse medication, but on the other hand, he has a right to treatment, treatment which could restore his capacity for self-determined choices, not choices driven by a paranoid psychosis. In our opinion, mental health legislation must strike a really very thoughtful balance between the need to treat and the need to protect individual civil liberties.
That the rights and freedoms of all individuals be maintained is not at issue. We strongly support legislative efforts to empower and assist Ontario's vulnerable citizens. These humanitarian values are certainly worthy of our support. Generally, the bills proposed attempt to emphasize and enhance the dignity of the mentally ill. They also attempt to demonstrate increased awareness of their psychosocial needs. But these bills also have the potential to empower illness and increase suffering.
You see, the autonomy and real freedom of a psychotic individual lies not in preserving his civil liberties, but rather in restoring his cognitive functioning through prompt and effective psychiatric treatment. Such treatment can restore the freedom in its most central form, the liberty to perceive, to think and to make decisions free from the distortions of psychosis. Individuals with schizophrenia are not freely choosing an alternative reality. Neither are they non-conformist or socially deviant; rather, they have a serious but in most cases very treatable brain disease.
Will the proposed legislation ensure that this young man, the man I just described, obtains needed treatment, or will the laws have us sit idly by until he becomes a danger to himself, a danger to others? At what point might this young man be considered incompetent? Unfortunately, within Bills 108, 109 and 110 a clear definition of "competence" has not been provided. Similarly, clear guidelines as to the determination of competence are lacking. The judgement of competence is a highly complex activity involving the skills and expertise of trained neuropsychiatric clinicians. The notion that advocates, presumably untrained, would assess an individual's competence to consent to treatment fails to understand the very nature of the disease or disability. The proposed legislation does not guarantee that the advocate will have the expertise to distinguish between competence and psychosis, nor is there any mention that advocates will be governed by a specified code of ethics.
While historically there has been good reason to doubt the efficacy of psychiatric treatments, there are now much more beneficial treatments available. Proposed changes offer a very complicated array of procedures protecting the rights of individuals to refuse such treatments, but the rights of psychotic individuals are restricted by illness and enhanced by treatment. It is not clear that these bills will protect the rights of the chronically ill to treatment.
Several of our consumers have voiced their concerns about this potential. In the words of one consumer: "When I become psychotic I want to be treated. I want to be hospitalized. I want someone to drag me to the hospital -- my family, the police; it does not matter -- because when I am well I'm a productive member of the community and when I'm psychotic I'm not myself and I don't make sense."
While most of us have no difficulty in making informed and rational decisions, for those with chronic schizophrenia self-determination is not always possible. The intelligent and articulate consumer I have just mentioned becomes very delusional when ill. He believes his family and the treatment team are plotting against him. His suspicions eventually lead to physical aggression and only then can he be admitted to hospital. For this young man untreated illness impairs his autonomy. It also impairs his independence. We fear the proposed legislation may unwittingly promote the tyranny of illness over his fundamental rights.
Taken together, the Substitute Decisions Act and the Consent to Treatment Act set restrictions on psychiatric hospitalization. Bill 108 appears to indicate that an individual, while capable, can grant authority to an attorney for personal care to consent to psychiatric hospitalization even if the individual later objects. But if I read Bill 109 correctly, I believe it states that only a court-appointed guardian of the person, not in fact an attorney for personal care, can give consent for psychiatric admission. Ultimately, only the court can authorize psychiatric hospitalization.
When it comes to psychiatric hospitalization, these laws appear to give greater weight to incompetent refusal than to prior competent consent. Only if a person satisfies the criteria for involuntary admission would hospitalization be expedited. Tightening consent laws but leaving committal laws untouched implies that the need for treatment will not necessarily ensure access to hospital, yet in the absence of comprehensive, community-based treatment facilities hospitals are currently the only place where treatment for an acute psychotic episode can be reliably monitored.
In 1988 the Graham report was published, Building Support for People: A Plan for Mental Health in Ontario. This report described a plan to develop a community-focused and integrated mental health care system allowing for mentally ill individuals to remain in the community as much as possible. The report clearly stated that the needs of individuals at highest risk for hospitalization would be given priority.
In 1992 we have before us a collection of proposed health laws and policies that will have a significant impact on the lives of these high-risk individuals. Unfortunately, in the absence of community mental health legislation, the implications of Bills 74, 108, 109 and 110 cannot be fully understood. Evidently the government has reversed the logical order of events. Unveiling community mental health legislation would enable the citizens of Ontario to place the currently proposed laws in proper context. We would urge the government to delay the passage of these bills until the vision of the Graham report is firmly in place.
Mrs Sullivan: I am interested in the emphasis that you place in your brief on the question of best interests versus the autonomy questions. I think the range you have spoken about in terms of vulnerable people and people who may need advocacy services, by example, is a very interesting way of analysing these bills. You have looked at people who are vulnerable, whether from physical disabilities or developmental difficulties or delayed development, people suffering from trauma and injury, people who have illness and disease, and various stages of reaction and response to determining their own self-interest in health care. I think that is a very interesting approach and I find it interesting that in a treatment centre this is recognized as being a clear determinant and basis of analysis.
As you have come to that conclusion, can you tell me, given your analysis of the different patient profiles, where you would see the advocate fit in and how the advocate could affect patients who are at the heavy end of the disease spectrum versus those who have a living -- what did you call it?
Ms Hamilton Wilson: A problem in living. I would think that individuals who have difficulties with problems in living, an unemployed and depressed young man, for example, would rarely if ever need the services of an advocate. I would welcome the services and active involvement of an advocate in any of the current treatment that I personally am involved in, and again I must specifically point out that I work most exclusively with individuals with a chronic form of illness. The severity ranges, of course, but we are talking very much about individuals who are chronically neuropsychiatrically ill. For those individuals, I see the role of advocates as being adjunctive and certainly providing the level of safeguard that I have heard throughout today the members of this committee are interested in.
I would worry, however, that the role of advocates is not well defined, nor is there a level of education qualification or whatever. Furthermore, there is no specified code of ethics. So it seems peculiar to me that we have many mental health professionals operating within the constraints and guidelines of a code of ethics, and then we potentially put these new people in, advocates, without that same safeguard. That certainly is a concern and a worry. But I see that role as valuable, particularly in the 10 provincial psychiatric hospitals. The psychiatric advocate role is certainly one that has been established over the years and one I believe is working at this point at a much better level than it ever did historically.
Mrs Sullivan: Are the social workers and chaplains at Chedoke now used to provide advocacy services?
Ms Hamilton Wilson: Yes, they are. I would say that the largest number of professionals involved in advocacy services are actually nurses, and that they are there 24 hours a day and are very much available on weekends and the rest.
In the psychotic disorders team at McMaster, I function within the role of family educator and work very closely with the nurses in attempting advocacy not only for the family but also for the client, in making sure that within that partnership both sides of the coin are represented and that we make sure we are not listening to psychotic wishes. We try very hard to find the best possible approach with minimal harm. Our interest is in benefit, and we have had a good deal of success in that.
Mr J. Wilson: Thank you for your presentation. I think your presentation now and Dr Cleghorn's earlier today really brought a breath of fresh air to our hearings, at least as they proceeded the last week we sat and yesterday and today, because you do raise some very good points.
One of them I want to touch on, and tell you that I very much agree with, is under your section on restrictions on hospitalization. There does seem to be a conflict between Bill 108 and Bill 109. I think you are dead right or you are absolutely right when you say that only the court can authorize psychiatric hospitalization in the long run.
I am just wondering how many of your patients would take advantage of that, ie, being able to direct in the powers of attorney for personal care that hospitalization committal or hospitalization also be a part of that direction. Do you think a number of people would be able to use that tool and therefore avoid full guardianship?
Ms Hamilton Wilson: It would be very difficult for me to comment on adequate estimates. I would guess that a goodly number of the individuals -- we work with about 65 individuals and their families -- would take advantage of that option. I personally feel that particular option must be set in an appropriate context. The goal of our team is very much to keep people out of hospital. To predict that another acute episode could happen -- at the point when a person is having his first psychotic episode, when that becomes resolved we are then in a bargaining position to talk about the possibility of it happening again.
I think, when we look at that in terms of a partnership, it becomes a lot easier to talk about how we will manage your next episode as a group -- your family, yourself and ourselves as a team -- should it happen: what you would like us to do and to have that agreement. I can certainly see in the clients we are currently working with -- again in the context of a partnership where I have no more power than the family or the individual with the illness -- that we are talking about a very egalitarian relationship. In that context I think that provision would be excellent and I look forward to it.
Mr J. Wilson: The statistics certainly back up your team's efforts to keep people out of hospital. I mean, you do your work with fewer beds than many other facilities and you should be commended for your approach. This is something we are seriously considering; in fact we have met a couple of times on it with my caucus colleagues, and if the government does not address it we will be bringing it forward.
Ms Hamilton Wilson: I think there is a reason why we keep people out of hospital and that is because we have wonderful families who are care givers and who are prepared to live with individuals who I know are horribly destructive and disruptive in the home. But they hang in. They certainly have the welfare of their relatives in mind and that care giver role is quite undervalued, I believe. I would hate to see legislation undermine the very important role that families are currently performing.
Mr Malkowski: Thank you for your excellent presentation. This morning Dr Cleghorn and some of the professional mental health people presented. There is a bit of a controversy between those living with schizophrenia and some of the people who are trying to provide help to those people. It is interesting that some of the psychiatric staff who have talked to us have witnessed that some of the psychiatric patients have been abused when it comes to consent to treatment or when people are misdiagnosed or mislabelled schizophrenic. Myself, I have heard some psychiatric survivors, for example, who have spoken to us, who were mislabelled and misdiagnosed and who have been forced to take treatment. It really impacts and the effects of that are quite serious.
You were saying in your presentation that it is important for us to recognize the right to treatment. I would like to know where the accountability is then and how you account for the balance of the people who are misdiagnosed or mislabelled. We have seen those stories confirmed at this committee when it comes to consent to treatment. How do you find that healthy balance in terms of accountability for those who do suffer from this illness and then those who are mislabelled? How would you find that balance?
Ms Hamilton Wilson: Hopefully, the experiences of that are going to be decreased in future. I cannot sit here and say that psychiatry in and of itself has not been to blame for many, frankly, horror stories that I have heard about. I do not hear about them as often now, but certainly 16 years ago, yes, there were difficulties in diagnosis and I believe that led to people being detained in psychiatric hospitals, potentially mislabelled.
I would hope that professional accountability, as nurses, as physicians, as social workers, in and of itself would prevent further such episodes.
I would also like to comment that I believe those experiences certainly have happened, but I am not certain as an individual or as a professional among this group that those individuals adequately reflect and are representative of the very large number of consumers within our province who have had good experience, who welcome treatment, and would get treatment again should that need arise.
Mr Malkowski: Okay, so would you agree then that it is important to provide complete information to the patient, both the pros and the cons, in terms of the treatment? Would you agree with that?
Ms Hamilton Wilson: Absolutely, absolutely, in that --
Mr Malkowski: Thank you.
Ms Carter: First of all, I think it is time we put behind us this argument over the causes of schizophrenia. I do not feel there is any need to blame anybody. I think we can agree that a lot of research still needs to be done on that and there are probably many causes. Also, obviously, a lot of families do a superhuman job in caring for sufferers, and I think nobody wants to belittle that.
Having said that, Bill 74, the advocacy bill, is aimed at strengthening vulnerable persons who do not have the family, friends or professional help they need or who are actually being abused. That is why the appointments advisory committee, which is provided for in sections 13 to 15 of the bill, is to be made up of consumers of the various categories and, of course, they will in turn exercise discretion as to who is to be on the Advocacy Commission itself.
Now, the question I would like to put to you is, there could be advisory committees to this commission which could have family and professional representatives on them, and I was just wondering if you have any ideas on that. For example, could they be central or regional? Should there be separate committees for professional and family advice or should they be mixed, and so on?
Ms Hamilton Wilson: I certainly believe there should be those committees. I would like to think they would be mixed actually. Again, in a spirit of partnership in assisting vulnerable individuals in Ontario, I strongly support the need for mixed kinds of groups where consumers are interacting with professionals and family members. Certainly I would like to see that on a regional basis.
I think the needs in northern Ontario are very different than what we have in Hamilton. We have a good spirit of volunteerism in Hamilton and a lot of committed professionals who go above and beyond in terms of committee work to make the situation we have there and to reduce the number of hospital admissions. Hamilton is a very cost effective community in terms of mental health. Regional representation, I believe, would be highly preferable.
I am certainly aware as well of the rationale behind Bill 74, to represent those who perhaps do not have families. I see that as admirable. I certainly support that. I would ask committee members to consider that some of those individuals who are currently in need of state support, vulnerable individuals, may have historically had nasty experiences with the mental health care system. Perhaps the families have, to the point where they have now disowned those particular people. Again, I think there is more answer in working in partnership to maintain those pieces of one's natural social network so that in future the intensity of advocacy programs can be reduced, not increased.
Ms Hobbs: I would just like to support that. I think this kind of cooperation is happening at the grass-roots level. It is happening in the district health councils, it is happening with advisory boards to various programs in our city for sure and in other jurisdictions, I know, and I think it should be reflected in the Advocacy Act.
Ms Carter: I think the last thing we would want to do is to disrupt that. We certainly want to keep existing structures.
The Chair: Ms Wilson and Ms Hobbs, on behalf of this committee, I would like to thank you for taking the time out today and giving us your presentation.
ONTARIO HEAD INJURY ASSOCIATION
The Chair: I would like to call our next presenters from the Ontario Head Injury Association. You will be given a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. Please identify yourself for the record and then proceed.
Mr Roberts: Thank you. My name is Bill Roberts. I am the senior manager of policy and development at the Ontario Head Injury Association. Thank you, Mr Chair and members of the committee, for inviting us to speak on behalf of the Ontario Head Injury Association and our members who include some of the most vulnerable people in our province. We are encouraged by the proposed legislation contained in these several proposed bills, and support the notion of empowering vulnerable persons and promoting respect for their rights, freedoms, autonomy and dignity.
Ontario Head Injury Association was cofounded six years ago by two parents of young persons who had sustained brain injuries. This association grew from the recognition that as a group, persons with acquired brain injury were not perceived as an assembly of people with brain injury as the underlying cause of a great variety of cognitive, physical and emotional impairments. Although we now have 28 affiliated community associations and support groups, brain injury remains a misunderstood or poorly understood problem by providers in health and social services in the broader human service network.
We acknowledge the need for an advocacy system which is non-aligned with the facility or program that is providing services to the vulnerable person as outlined in Bill 74. We are particularly interested in clause 7(c), which describes the commission's role to "provide advocacy services to help vulnerable persons to bring about structural changes at the political, legal, social, economic and institutional levels."
Within Ontario at this moment there are individuals who are not receiving appropriate rehabilitation opportunities, not just because of insufficient places or spaces in programs, but also because they have been placed in facilities which do not recognize or understand the implications of acquired brain injury. These settings include hospitals, nursing homes, psychiatric facilities and correctional facilities.
We believe there will be a considerable workload for the newly hired advocates to this commission in order to address these injustices for persons with brain injuries.
Clause 36(b) of Bill 74 describes the commission's ability to make regulations to "establish minimum qualifications and educational standards for advocates." We strongly recommend that any advocate who works with people who have acquired brain injury should be hired with a background in the neurosciences, attend university-related courses or receive orientation and training from a leading acquired brain injury rehabilitation program as a prerequisite to working with this group. While we do not expect this person to supplant the role of a neuropsychologist or attending physician, we observe that many persons who are providing care to our most vulnerable members have no training in this area, and through ignorance are creating counterproductive environments for recovery and rehabilitation.
The issue of capability is embedded in both Bill 108 and Bill 109. We wish to bring to the attention of this committee that following brain injury, individuals may make continued recovery for long periods of time. We caution this committee to ensure that not only should a vulnerable person be allowed to reassert his or her rights to self-manage, but also there is a process to review and encourage the vulnerable person, especially the recovering individual, to take an active role when possible.
In subsection 6(3) of Bill 109, "A person may be incapable with respect to treatment at one time and capable at another." Further, in section 10(1): "When a health practitioner finds that a person who is 16 years of age or more is incapable with respect to a treatment, the health practitioner shall, (a) advise the person of the finding, unless the person is unconscious."
We recommend that any treatment of non-emergency nature administered to any person apparently conscious or not, begin with information as to what treatment is about to occur. The reason for this request is as follows: (1) the possibility that the individual may be able to process this information at some level, even if he or she cannot acknowledge physically that she or he understands; (2) the increased likelihood that medical staff will respect the basic dignity of the patient in a coma-like state and not comment on that individual in a degrading manner; (3) Recent research by Dr Roger Wood that suggests that patients in a coma-like state may improve when sensory input is regulated and patients receive orienting information from all staff involved in their care; (4) we still have no standardized definition of coma. What is coma to one person may be an advanced state of awareness to another person.
In the definitions, subsection 1(1) of Bill 109, "treatment" is defined as "anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose, and includes a course of treatment." We note that many of these treatments occur in teaching hospitals and involve research. While we see great value in continuing research and in educating students, we recommend that informed consent include respecting the wishes of patients to privacy in facilities of this nature.
In summary, we see this legislation as long overdue for vulnerable persons and we generally support the principles and processes as outlined in the proposed legislation. We have noted some reservations about the implementation of these bills and recommended methods to improve the rights and dignity of persons with acquired brain injury.
The Acting Chair (Mr B. Ward): Thank you very much for your presentation. We have time for a couple of questions from each party.
Mr Sterling: How many people does your organization represent?
Mr Roberts: There are currently in Ontario, through our best guesstimate, 19,000 people with acquired brain injury. We have over 5,000 people on our database of members and in other local associations, so we represent a significant number of those people who are defined as brain injured.
Mr Sterling: In Bill 74, the control over the advocates remains a worry of mine. There may be situations where they are not properly trained, or they get off on an ideological bent rather than being concerned or advocating, or they start making decisions rather than advocating -- and there is nothing in Bill 74 which indicates that an advocate cannot make a decision; I want to make that perfectly clear. Do you think that there should be some complaints mechanism, some kind of mechanism whereby you can go to a fairly independent tribunal or quasi-tribunal or board or whatever for your people to complain about the treatment they may have been dealt by an advocate?
Mr Roberts: Yes. As I pointed out, through ignorance facilities sometimes really do not understand the nature of brain injury and come to improper conclusions either through misdiagnosis or non-diagnosis of a problem. Similarly, families, despite the fact that they are the primary source of support and concern and nurturing for individuals with brain injury, occasionally are counterproductive and really do not understand the implication of brain injury. That is why we support the notion of an advocate being a third party to support the rights of the individual in this process.
Clearly, where an advocate would interfere with the natural process of dialogue between a service provider and a family and go off on a tangent that is counterproductive to that healthy process, that should be brought to the attention of someone, whether a tribunal or someone within the system. So there needs to be another sort of counterbalance to the system. But that is why we support the general notion of an advocacy system, because we see this paradoxical situation where, on the one hand, you have families providing all these wonderful things in some circumstances, but in other circumstances very truly not understanding the nature of the injury and being very counterproductive and blaming the victim.
Mr Sterling: They are talking about 150 advocates for this province's 330 nursing homes, close to 300 hospitals and 500 rest homes. If your group was given the access to some advocacy services, where would you deem them most relevant?
Mr Roberts: I think we would probably see the most relevant activity taking place in institutions at this point -- what we describe as warehousing people with traumatic brain injury. That is to say, institutions that do not provide any level of basic rehabilitation. Those would include general hospitals, nursing homes, and so forth.
I think there is a growing recognition among psychiatric facilities that there are patients who may have dual diagnosis that they may not be adequately equipped to treat, which is a whole other kind of issue, because they are still receiving some kind of basic treatment, although from our perspective it is not necessarily the right format.
Ms Carter: In respect of advocacy, the task of an advocate as foreseen in Bill 74 is merely to ascertain the wishes of a vulnerable person, so I find it hard to see how they could do anything that was too damaging. Of course, systemic work, where they tried to alter the setup, would come as a result of dealing with many cases where they discovered problems in common, so I think that would evolve in a natural kind of way.
Also the Advocacy Commission itself has been left, I think, by this bill to set up itself the details of how advocates would be trained, so I am not sure that the issue you raise is addressable in terms of the act.
Mr Sterling: Could I ask one more question if there are no other questions?
The Chair: Yes, Mr Sterling.
Mr Sterling: Do you see the advocates as a friend of your clients?
Mr Roberts: On behalf of the individuals who have sustained the brain injury, of course, I see that as their basic role, to protect their rights.
Mr Sterling: But you see, those people who are supporting the Advocacy Act -- and I can see a role for an advocate, but I am just concerned about the understanding of what these people are going to do when they get out there, so that people are not disappointed.
I understand the role of the advocate to be at a second level of advocacy. In other words, these people are not going to be going around in the institutions asking your people, "Are there any problems?" They are going to be there, as I understand it, if there are some significant problems and somebody is going to point one of your people towards these advocates. Is that your understanding of this or do you think they are going to have the kind of resources to be contacting your people?
Mr Roberts: I would hope there would be, first of all, a considerable broadcasting of what the program is so that the general population would become aware of it, and clearly not only family members but other individuals who know of people with traumatic brain injury. Once they found out there was potential advocacy service for that individual, I think the uptake on the service would be quite high, from our perspective, because we have a 1-800 helpline that links people to services. But in the course of that it becomes evident through that helpline and our dialogue with families that often they are totally dissatisfied, but there is no alternative for them other than an institutional setting because they are incapable of supporting that person in their own home with the current level of support they are receiving.
So, again, in terms of systemic change, I think there is a role for the advocate in that and of course it would come on a case-by-case basis. You know, we already have quite a few cases that we have become aware of where we could use an advocate right now to facilitate the process of helping to identify that a person needs to be in a rehabilitation setting, for instance, rather than in a general chronic care wing of a hospital where he is getting virtually no rehabilitation.
The Chair: Mr Roberts and Ms Twerdohlib, on behalf of this committee, I would like to thank you for taking the time out today and giving us your presentation. Thank you very much.
ONTARIO LONG TERM RESIDENTIAL CARE ASSOCIATION
The Chair: I would like to call our next presenters from the Ontario Long Term Residential Care Association. You will be given a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow questions and comments from each of the caucuses. Please identify yourself for the record and then proceed.
Ms Wolman: Thank you for giving us an opportunity to present before the committee today. My name is Harriet Wolman. I am the chairman of the public affairs committee of the Ontario Long Term Residential Care Association. I was here yesterday as part of the ad hoc group that presented to you in the morning, all health care providers, but today we are going to represent our own particular interest and our own association.
With me is Mr Rick Winchell, the executive director of the Ontario Long Term Residential Care Association. He will lead off with some facts about the association. Just before we start our formal presentation, may I say to you that we do support the need for, the principles and the intent of the legislation in so far as we believe there needs to be protection for vulnerable adults and others in the community. However, we do believe that there are serious flaws in the legislation and we feel that they are of such a nature that the legislation should be withdrawn and that there should be further consultation. We are going to make some of those points to you this afternoon.
Mr Winchell: Our association represents the rest and retirement home sector, which includes about 500 independent facilities. Just to clarify what we do, we provide 24-hour personal care by about 13,000 professional staff, from activation, nurses' aides etc. We provide assistance with bathing, eating, dressing, medication, community outreach activities and pastoral services. We provide housekeeping and laundry and transportation to and from medical appointments, social activities and what have you.
We basically fit in the long-term care continuum and we fill the gap between home care, those services provided in-home, and extended care, which is what the nursing homes and homes for the aged do. We provide personal daily support up to a maximum of about 1.5 hours of nursing care per day.
Our association has about 45% to 50% representation of the rest home sector in Ontario. I think it is important to preface our presentation today by saying we have long been pushing for this type of process, a complaints process on a provincial basis. We instituted a code of ethics and a commitment to residents several years ago and have, since the inception of the senior citizens' affairs portfolio, worked very closely with the Office for Seniors' Issues, formerly the Office for Senior Citizens' Affairs, in resolving family concerns and complaints and in providing an information service for the public at large when it comes to issues related to retirement living. That is the background.
Ms Wolman: In addition to my role as a volunteer with the association, when I am not appearing before your committee I manage a retirement home in East York, so I am a front-line worker and I understand many of the problems that we feel people in our sector will experience if this legislation is implemented the way it is.
We believe it will create great confusion for both the consumer of health care and the provider of health care. Because the legislation is so complicated, it is inevitable that there will be different interpretations of how to deal with it. Some of those points were made by the ad hoc group yesterday. It will put far too much emphasis on the individual's right to advocacy and too little on the individual's right to timely access to health care services and to care. We believe it will inhibit us in providing the care that we normally provide on a day-to-day basis.
I would like to give you some examples based on my experience so you can understand some of the things we think we will be up against. Assuming that the legislation was passed and that a substitute decision-maker was empowered by one of our residents so that we had the authority to provide the kind of care that we might have to give him, like changing a dressing or giving medication, that sort of thing, which is something we do in the normal operation of rest and retirement homes, if we had a resident then who said, "I'm not going to take my pills today" or "Don't change the dressing on my leg" -- that example of a dressing was used yesterday in reference to hospitals but it could easily happen in a private, congregate retirement home -- we would then have to take a look at that resident and say, this resident may have changed his or her mind about the substitute decision-maker, and we would then be obligated to not treat and to call in an advocate, if the advocate were not already coming in to see us. We feel it really could inhibit us with the timely application of the care we normally provide on a day-to-day basis.
I feel that the complexities of it, as illuminated by the legislation being proposed, would really hamper people who are not as vulnerable as some of the people coming in who have been described by others. They are all being lumped together, and that is something we hope the committee will take into consideration when it is looking at possible amendments.
We are also concerned about the standards in training which would be applied to the advocates who will come in and investigate situations as they arise. We understand from what we have read of the legislation that the advocate is a rights adviser, could be an information broker and could be a facilitator of problem resolution. But the role should be clearly defined in Bill 74, recognizing the situations in which an advocate may be called upon with the other two bills. We do not feel it has really been clearly expressed in terms of what the role of the advocate is and how that could actually be carried out. We think that is an important thing for us to be aware of before the passing of the bills.
We also feel that we have to create realistic expectations. Primarily, I think for the most part you will see that we represent people who will fall into a grey area. It is not the unconscious person who might be abused or might have treatment removed, but it is someone who may be vulnerable but may not be vulnerable in the same sense. I think the blanket inclusion of all is really dangerous. We feel that the consumers are going to need to be educated so that we can all understand what kind of advocacy one can really expect -- what is a realistic expectation of the program once it is implemented.
We also feel that the definition of "vulnerable" in the proposed legislation is too broad. It could mean many of our residents. Should this presumption prevail, all 500 of our homes would require an onsite advocate, which we think would be very costly and would be unnecessary in -- I do not know what the percentage would be -- certainly most cases. We have a great respect for the invaluable care and support families commit to their relatives living in our facilities. These people already rely on their family and friends to act as spokespersons for them and, if necessary, to express preferences. It is a system that is working well and we feel that if it ain't broke, don't fix it and concentrate on the areas where the needs are really very serious.
We feel that ground rules should be developed around what is reasonable to determine an advocate's right of entry. Also, the facility should be given notice of an advocate's intention to visit a vulnerable person. I am not talking about other situations but rest and retirement homes, which are really private, congregate living centres where people go voluntarily. Many of them live there and use them as bases but still come and go very independently, although we have some residents in those facilities who really are more vulnerable than others. Our residents have come to expect their privacy to be respected and strangers not to come in and out of the buildings uninvited. There are common areas that are quite open to the public. I think the residents who would not be involved in some of these investigations or assistances would be most offended that strangers were coming into the building and looking around.
Can we afford an Advocacy Commission? At a time when the health care system is being severely tested with funding cutbacks, it is questionable whether the province can afford to fund such a commission properly. We really question the ability of the system to focus on systemic problems. I think that if there are problems that need to be addressed by advocates, we should be looking at why these problems are occurring and not so much at intervention. We feel that, by nature of the descriptions, it appears to be adversarial rather than complementary. We are concerned that we will develop an adversarial system rather than a cooperative and complementary one.
We recommend that there be a public awareness campaign to educate members of the community about the need to plan for themselves or their family members by taking steps to create a power of attorney for personal care, naming a lawyer or applying to a guardian prior to entering a health care facility.
We support the fact that there should be people out there providing resources, support, assistance and advocacy on behalf of residents, but we are not sure that it should be done in a form that becomes investigative rather than supportive.
In residential care, various therapeutic and medical treatments are carried out by nursing staff, health care aides, activation specialists and others who do not fall under the act's definition of a health practitioner, and yet these are the people who will be involved, if Bill 109 is implemented, to obtain consent and evaluate an individual's capacity to provide consent. The role and responsibilities of these care providers must be clarified by the legislation, if it is going to apply to rest and retirement homes, because of the more informal and social nature of the interaction that many of our care providers have with the residents. The act needs to explain the process of obtaining consent when this category of care provider is also involved.
We are also concerned about the definition of treatment. In Bill 109 treatment requiring consent is broadly defined, involving nursing care and, by implication, any type of personal care. Provision of care in rest and retirement homes relies on the concept of care that is personalized to the individual. Many of us are developing a program or a plan of care. We do that cooperatively with residents and so on.
Not to be too graphic about it, incontinence is not a problem that just totally incompetent people have; there are frail, elderly people who are not incompetent who have problems of incontinence. Sometimes when they are living with us, their health deteriorates and their ability to make intelligent decisions about these habits does become somewhat impaired. If we were put in a position of not being able to recommend to residents that they wear things other than underclothes to protect themselves or that we have to change them from time to time -- even though they are mobile, dressed, walking around and eat their meals in a congregate setting, they sometimes still need to have their diapers changed. We cannot be put in a position of having someone have an accident and refuse to accept our helping them to change. It is very problematic. I mean, I am sure that no one has thought that in that case we should have to go through the whole bureaucratic process. It would be very cumbersome, time-consuming and obviously costly.
The proposed legislation does not allow flexibility in the common situation and must be changed to limit the consent requirement to clearly defined nursing care procedures or to allow a blanket consent for ongoing programs. The previous point that I made really makes that example.
The other thing we are concerned about is that we feel the protection from liability is really inconsistent. There is protection for the advocates, who are named in the bill, but there is not enough protection for the health practitioner who follows the requirements of Bill 109 and may be found guilty of an offence under the Criminal Code of Canada. We maintain that the current proposal conflicts with the Criminal Code because it can prevent a health practitioner from providing timely care.
I have touched on our recommendations. I am going to turn the microphone back to Rick and he will summarize them for you.
Mr Winchell: Just in summary, even though the government may have developed some amendments at this point, we have not been privy to them, and we feel that further consultation would be required to ensure the changes made will solve some of the concerns that not only we but many other organizations have. OLT strongly recommends that the government table the current legislation and develop a more comprehensive consultation process with all groups and individuals.
We recommend that the government develop several pilot projects. In fact, I hark back to the psychiatric system when they piloted an Ombudsman program. I was the original Ombudsman in Ontario at the Lakeshore Psychiatric Hospital in 1974. We believe this comprehensive type of legislative package should be piloted to look at far more than just the cost, but there are an awful lot of insidious things that people do not routinely think of within the policy level.
The role of an advocate should also, as has already been pointed out, be clearly defined in Bill 74, recognizing the situations in which an advocate may be called upon with the other two bills. Education programs relating to all the legislation must be put together and implemented with consumer groups, health care providers and the general public.
We believe the definition of "vulnerable" in the proposed legislation is too broad and should be much more clearly defined. Ground rules should be developed around what is reasonable to determine an advocate's right of entry. Also, the facilities should be given notice.
Anyone moving into a facility should draw up a pre-validated will detailing individual preferences for personal care and medical intervention in times of crisis. We recommend that the government sponsor a public awareness campaign to educate the community about the need to plan for themselves or family members by taking steps to either create a power of attorney for personal care, name a lawyer, or apply to be a guardian prior to entering a health care facility.
The role and responsibilities of care providers are not very well defined, and we implore the government to take a harder look at that. The consent bill does not allow flexibility and must be changed by limiting the consent requirement to clearly defined nursing procedures or by allowing a blanket consent for ongoing programs.
Mr Mancini: I have one short question. I was interested in your pilot projects suggestion. How would that work and where would you think it should work?
Mr Winchell: Going back to some discussions we had very early on in this process, we looked at the idea of peeling the package apart and taking, for example, the advocacy portion of it, applying it to a community and testing it in all the different applications that are outlined. That was, as I said, done in the psychiatric system, although unfortunately over a period of different governments there was not enough debriefing to pass on information.
That brings up another concern I have, that there are precedents out there that go far beyond -- if empowerment is truly the intention of this package, and I believe that is what the government is intending, I applaud them for that. By its definition, we are providing ways and methods for people to help themselves. My concern is that we are in fact doing it in a way that is creating such a bureaucracy, and 10 years from now, if we have more advocates down the road than we have today, from my standpoint it is a failure. We are not empowering people. It is a contradiction.
Mrs Sullivan: I am interested in your recommendations. I think they have been well thought out and are logical and consistent. As a result of your first two main recommendations, I am going to address my questioning not to you, but to all three parliamentary assistants. The recommendation here, as from other groups, has been that amendments should be put forward for appropriate comment. I am wondering if the parliamentary assistants will commit now to an additional consultative process once those amendments are put on the table.
The Chair: Does anybody want to respond?
Mr Malkowski: I can tell you very directly, Mrs Sullivan, that for many years, if we look back, the PC government and the Liberal government looked at that concept of advocacy and were in support of it and did consultations. We have had two weeks and this is our third week of consultation and we are still listening to people. What we are looking for is to hear the people's concerns; that is why we are here now.
Mrs Sullivan: Does that mean that the Minister of Citizenship will be bringing forward no amendments to the Advocacy Act, that this bill will remain as it is now and that there will be no further consultation?
Mr Malkowski: What I mean is that we are listening to the presenters, and when the public hearings are finished there will be discussions to develop amendments. But we need first to listen to the presenters.
Mrs Sullivan: Subsequent to those amendments being developed, will there be public consultation on those amendments? Clearly there are very serious problems with these bills. Every single group, agency and intervenor before this committee has indicated that there are problems with the bills. Will there be additional public consultation when amendments are brought forward?
Mr Winninger: I just wanted to add to what my colleague Mr Malkowski said.
Mr Mancini: No and no, is that what you are adding?
Mr Winninger: If you do not want to hear what I have to say -- I can understand the opposition may never want to hear what the government has to say, but I am confident that we will continue to listen to constructive criticisms. I do not think it is fair for Mrs Sullivan, who has been here for part of the hearings but not all of the hearings, to say --
Mrs Sullivan: I have read every single brief and document.
Mr Winninger: Will you excuse me? I listened to you. Not every group --
Mrs Sullivan: On a point of order, Mr Chairman: I have read every single brief and document for those events which occurred when I was not in personal attendance at this committee. There are serious errors and omissions in this document.
Mr Winninger: That is not a point of order.
The Chair: Thank you, Mrs Sullivan.
Mr Winninger: It is not a point of order.
The Chair: Mr Winninger, you should not be commenting on people's attendance.
Mrs Sullivan: That is right.
Mr Winninger: I did not think I was, even though the opposition did a number of times yesterday.
In any event, Mrs Sullivan, if she has read the briefs and if she has read Hansard, will know that a number of those deputations said that they did not want us to wait, that they have been waiting 10 years for this legislation to go forward and the last thing they wanted was further delays. Naturally we will continue to listen to constructive suggestions to make the legislation better. If this is just a tactic to delay the bills on the part of the opposition, no; but if it is a genuine desire to improve the contents, the form and substance of the legislation, certainly I -- I do not speak for all of my colleagues -- have no objection to the kind of informal consultation that goes on. But we have heard a very strong message from a number of deputations. They do not want to see these bills delayed. They want to see changes, but not hold them up.
Mrs Sullivan: On a point of order, Mr Chairman: I believe that once again my motives were impugned. The member has indicated that the opposition is not prepared to improve, or is interested in improving, these bills. We have indicated all along that we want to see the finest and most appropriate kind of legislation put into place. This is not it.
I have asked a question; I have not received the answer. Will there be public consultation after the amendments are on the table?
Mr Winninger: I have given you my answer.
Mr Mancini: We have heard two noes.
Mrs Sullivan: No and no.
Mr Wessenger: If you want, I am just repeating what I have said on many other occasions to Mrs Sullivan's questions. Our minister has very clearly put forward her position. She has flagged certain areas where she considers we should look at amendments. It is clear that, as far as our act is concerned, there will be amendments coming forward based on the presentations made in these hearings. We are proceeding in the normal manner, which is to listen to the public through the public hearing process. After we listen to the public, then the next progress is to proceed with the next step. There is nothing unusual about that, it is the normal legislative process, and that is the way it is intended to proceed.
Mrs Sullivan: It may not be unusual, but in this case it is not going to be very effective.
Mr Wessenger: I happen to think our legislation is very good and I happen to disagree with you, Mrs Sullivan, on this.
Mr Sterling: I will give notice now, Mr Chairman, to move a motion at the end of the day. I did not want to take up the time of the contributors, but I am going to move a motion which I have prepared and I will pass it around. It basically takes into account what Mrs Sullivan has put forward: that we will demand or ask that there be a two-month period after the government tables its amendments for groups to have a time to consider those amendments and that we then come back in this committee and have further public hearings so that those groups can again comment on what the legislation is actually going to be. I will be moving that motion later today.
With regard to your presentation I would like to find out, of your residents, how many would be concerned with competency? Is it 10%? Is it 50%?
Mr Winchell: I do not think we can answer that, because the legislation as it is proposed is far too nebulous, and that is one of our major concerns. The terms "frail" and "disabled" are used. It does not necessarily mean incompetent, but as it is proposed right now there is a lot of greyness. We cannot really answer that question.
Mr Mancini: It is everybody.
Mr Winchell: Exactly. Could I just add one other very important point from our standpoint? The Advocacy Act as it is proposed right now says that there will be no proceedings or damages against the commission members or advocates. I have a real concern when you are talking about empowering people, yet you exclude some people from being accountable to the system. If the care givers are going to be accountable legally, I believe the commission members and all advocates should also be held equally accountable.
Ms Wolman: Mr Chairman, could I add another point? I think when we talk about a pilot project, we really feel that instead of a lot of dramatic examples that everybody could give in terms of what might happen, it really makes some sense to take a particular situation, whether it is a rest and retirement home or a community, a small town -- I do not know; it would have to be designed and it would have to be thought through -- and see how the system would work and see whether or not these bills really have application. You have to look at it in a hospital setting, you have to look at it in a private congregate communal setting, communal living, and you also have to look at it out in the community to see whether it would work.
If a resident who has chosen or whose family has persuaded him or her, validly so, in one of these grey situations, to live in a congregate setting such as a retirement home decides that he does not want to live there any more and an advocate comes in, what does the advocate then suggest? What does the advocate do? The person may not be capable of living on his own yet may not be incompetent under the Mental Health Act and could be a frail elderly person who wishes he did not have to be given care. Will the long-term care system then be adequate enough, with the proposals the government is making, to make sure that such a person, if living in the community, would have sufficient supports out there if, for instance, he did not have children?
It is a very complicated situation, and before a huge bureaucracy is put into place and costs are driven up, it seems to me to make sense to test it out to see whether it would really work, and it has to encompass more than just one aspect of it. We are a part of it, but others are a part of it as well, and so are people who are living in the community, frail people living out there in the community independently.
Mr Sterling: Could I just ask one question which has come up in this submission as well? The normal day-to-day taking care of in particular elderly people, people who are not capable of taking care of themselves -- nursing care, cleanliness, personal hygiene or whatever -- as I read the legislation, that would be a treatment. If I am incorrect, I would like to be corrected. Is it possible, or have the ministries tried, to divide that kind of care away from the other kind of care, which I think is where most of the public is in terms of dealing with this legislation? Is it possible to do in language?
Mr Wessenger: Is that addressed to me, Mr Sterling?
Mr Sterling: Yes.
Mr Wessenger: I think that first of all we should clarify what this legislation does with respect to that. It does not cover personal care delivered by non-health-practitioners. For instance, in the brief it describes some of the particular types of treatment. I will give you examples of what I think would be personal care and as long as they are not delivered by a health practitioner would not be covered by this act: feeding, unless it had to be feeding by tubes; positioning a patient for comfort to prevent bedsores; changing a patient if he or she is incontinent. If those were delivered by a non-health-care-practitioner, that would not be covered by this legislation at all.
Mr Sterling: I guess part of the concern, when you separate it on the basis of who is providing the care, is that you are encouraging people to have less-qualified people do things which are quasi-medical. Do you follow what I am saying? If, for instance, the decision by a retirement home is either to hire a registered nurse's assistant or someone else who does not have any professional designation, you are asking them to hire the one without the professional designation because of this legislation. Would you not be better to draw the line in terms of what is included within the treatment and what is not treatment?
Mr Wessenger: That is really a good point to ask the individuals concerned, if they believe that there should be a distinction between personal care and treatment as described by a health practitioner and whether they feel there should be a division. I think that is something we should ask their advice on.
The Chair: Very briefly, please.
Ms Wolman: I have some difficulty with the way you dealt with your definition of a health practitioner doing certain of these things. In a home the size of the one I manage, which is 55 residents, it is very often my nurse in charge who provides some of these services, who is a health practitioner and subject to the College of Nurses of Ontario and so on. There is no way, as a responsible manager, that I would hire a less-qualified staff person. So by virtue of the fact that I would have that person on staff and on the premises 24 hours a day, we would put ourselves under the legislation because I would not sacrifice the professionalism or the quality to be exempted from it. That would not be my goal. My goal is to deliver the best and the highest quality level of care.
Mr Malkowski: I am wondering if you have any specifics in terms of recommendations related to the Advocacy Act; anything specifically in terms of amendments you would like to see.
Mr Winchell: We certainly do. Specifically, we would like to see the advocacy portion, Bill 74, pulled out of the package and trial-tested in a community so that we can all work in partnership in looking far beyond just the legal implications and the actual delivery system itself. That is our foremost recommendation to this government.
Ms Carter: Your second recommendation is that the legislation be tabled and a comprehensive consultation process be embarked upon. It seems to me that this question has been under discussion for years, not just with this government coming into power. We have had the Fram commission, O'Sullivan, SARC -- you name it. We are now engaged in a very comprehensive process of listening to suggestions, I would have thought. I wonder what else you feel is needed.
Mr Winchell: All right. I appreciate your point. I should emphasize -- and one of the concerns that we have had from the outset is -- that other than receiving the proposed bills and being invited to present to this particular committee, we have never sat down face to face with any representative from government and been asked our opinion, particularly at the developmental level where we think we could have snipped a lot of the concerns in the bud.
Ms Carter: I have to say that I --
Mr Winchell: I just wanted to add to that: One of the additional concerns, and probably a further demonstration of the frustration we have around the consultation process, is that it is our understanding that there have been some amendments already drafted which have not been shared with us. It is difficult for us to appropriately input into the system if we do not share and work together in this.
Ms Carter: But on the other hand, and I think this has already been mentioned, we do not wish to put amendments forward until we have heard the input. Then, of course, there will be further discussion.
Mr Winchell: But I understand there are already some amendments out there which I think we could --
Ms Carter: Not in any file I saw. They are being considered. The consultation is taking place on them. The other point I wanted to make is that I think you see --
Mr Winchell: Mrs Carter?
Ms Carter: Sorry.
Mr Winchell: I just wanted to add, that is why I quite support the idea that once the amendments are finalized, we have a period of time to respond appropriately before this goes forward.
Ms Carter: I see, okay. My other concern is the way you seem to envisage the Advocacy Act working, as far as your institutions and so on are concerned. It seems to me that most people, whether they are in a family or a residential home, are well looked after. This act would not apply to them in any way because they would have no need of an advocate. But can we not accept that there are some people in some situations who may fall through the cracks and not have their wishes listened to and who may need somebody to come in and listen to them?
Mr Winchell: Absolutely.
Ms Carter: I wonder why you see this as such a threat. An advocate will come with the intention of seeing only a particular person whom in some way he has heard about. All they will do is have a private conversation with that person, listen to his wishes and do their best to act upon those, and that is all.
Mr Winchell: I would like to respond to that. I can draw upon my own personal experience, which is four years as the first psychiatric ombudsman in this province in the early 1970s. I can tell you with all confidence that it was a very workable system. It was anything but adversarial. It was very conciliatory, complementary. We worked with patients, with family members and staff. In fact, in a lot of cases, staff were the ones who initiated the process because it was helpful to the whole therapeutic process.
However, I have to tell you that what started out as a very workable program has turned into, years later, a system whereby there are, separate from administration, separate from the entire institution, fully employed lawyers at every psychiatric hospital in this province, and it is extremely adversarial. Staff are very concerned about carrying on their job with a lawyer looking over their shoulder 24 hours a day. That is our concern.
Ms Carter: Our act is specifically --
The Chair: Thank you, Mrs Carter.
Mr Winchell: We believe strongly in the intent of this proposal. We just have concern about the fact that we are not looking far enough down the road.
Mr Winchell: I would like to meet who said that.
The Chair: Ms Wolman, Mr Winchell, on behalf of this committee, I would like to thank you for taking the time out today and giving us your presentation.
HOSPITAL COUNCIL OF METROPOLITAN TORONTO
The Chair: I would like to call forward our next presenters from the Hospital Council of Metro Toronto. Good afternoon. Just a reminder, you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr Gamble: Thank you very much, Mr Chairman. Good afternoon, ladies and gentlemen. My name is Paul Gamble. I am the president of the Hospital Council of Metropolitan Toronto. With me this afternoon is Sharon Nettleton, the vice-president of the hospital council.
By way of background, the hospital council is a voluntary association that represents the diverse needs of the 51 hospitals here in the greater Toronto area. Our membership includes all 42 hospitals within the boundaries of Metropolitan Toronto, as well as a corporate membership with the University of Toronto. In addition, nine hospitals in the surrounding municipalities of Durham, York and Peel are also members of HCMT.
The association provides administrative and coordinative services for region 6 of the Ontario Hospital Association as well. HCMT, as an association, is actively involved in the development of policy as it affects our member hospitals, local health planning, data collection and analysis. Last fall, as part of our ongoing environmental scan of issues likely to affect our membership, our strategic issue identification and research committee reviewed Bills 74, 108 and 109. We prepared a written response dated September 24, 1991, which was submitted previously to the committee for your consideration.
In general, I think it is safe to say that HCMT supports the spirit and intent of these three bills; however, our membership did express a number of concerns with respect to specific proposals contained within, particularly with respect to certain issues on implementation.
I would like to take a few minutes now just to briefly review our position of September. After that I will ask Ms Nettleton to bring you up to date on what has occurred in the association as we have continued our discussions during the past number of months.
Beginning with Bill 74, the Advocacy Act, particularly with respect to accessing advocates, as public facilities where many vulnerable individual reside hospitals and their staff will naturally have a role to play in assisting and directing vulnerable persons to advocates. It is our belief that hospitals should participate and be represented on the committee responsible for designing the access process.
With respect to advocates and patient-client representatives, HCMT felt hospitals should participate in the development of guidelines for advocates and the existing patient-client representatives in the institutions.
As far as the assessment of vulnerability went, HCMT felt that the successful implementation of the Advocacy Act would require a clear specification of which health practitioners are responsible for making assessments regarding vulnerability. The act should stipulate who is responsible for identifying the vulnerable individuals and who possesses the ultimate authority to classify an individual as vulnerable.
We also felt that the education of advocates and staff working in facilities where vulnerable persons reside is critical to the successful implementation of the act. Hospitals should participate in the planning and education of advocates and employees.
It was also noted in the September brief that the Advocacy Act does not indicate that any recourse will be available for vulnerable adults or their next of kin who may be unsatisfied or ill served by the advocates. We therefore felt that the act should establish some mechanism, an agency or a board, to process and respond to any complaints or concerns regarding advocates which may be lodged as a result.
Concerns were raised by the membership with respect to the section on right to access of records. There may well be occasions when the time necessary for retrieving records will exceed the four days stated, particularly with respect to the retrieval of records that may be stored offsite. Facilities should be permitted an exception to that four-day rule where circumstances require and are appropriate.
Our final comments with respect to the Advocacy Act dealt with the section relating to the rights of entry. While HCMT supported the right of advocates to enter a facility to meet with vulnerable persons, we recommended that when possible advocates provide notice before entering a facility, so as to allow time for the staff to schedule meetings, prepare the facilities, rooms, whatever the case may be.
Moving on then to Bill 109, the Consent to Treatment Act, HCMT again noted a number of areas of concern.
With respect to the section dealing with the assessment and definition of capacity, HCMT felt there should be demonstrable standards or criteria upon which consistent and reliable judgements can be made regarding an individual's capacity to understand and appreciate the consequences of a particular treatment. There must also be quality assurance for these competency assessments. The assessors of competency must be trained and some certification process must exist.
The Consent to Treatment Act does not address the issue of public education. In order to ensure that the public is fully informed about the Consent to Treatment Act and the rights of patients, HCMT felt the legislation should establish a public education program as well as an education program for health care personnel.
With respect to the section on consent on behalf of an incapable person, HCMT concluded that regulations or guidelines should clearly indicate what constitutes a reasonable inquiry into the existence of persons referred to on the consent list. This would assist the health practitioners to fully abide by the intent of the legislation.
Finally, dealing with the emergency treatment of incapable persons, HCMT supported the principle that an individual's rights regarding his or her personal care should be followed when the individual is incapable of making his or her wishes known, if those wishes have been made at a time when the individual was capable.
To facilitate this process, we recommended that the Ontario health card be coded to indicate whether an individual has a power of attorney for personal care, the name of his or her family physician and next of kin. Knowing that these wishes exist could be problematic, especially in emergency situations.
As far as Bill 109, the Substitute Decisions Act, went, HCMT supported the spirit of that proposed legislation and had no particular comments or concerns to make.
As I noted, that is a very brief summary of the position paper that was submitted last September. Now I will ask Ms Nettleton to bring you up to date on our further discussions on these matters.
Ms Nettleton: We have taken advantage of the opportunity before us -- and that had to do with the delays, I guess, of this committee in reviewing the legislation -- to have further discussions both within our membership and with other organizations. I would like to present to you today some comments, some other concerns that we have had regarding mostly the implementation of the three pieces of legislation.
Some of the input has been received through the affiliate groups that are associated with the Hospital Council of Metropolitan Toronto, and these are 13 organizations that provide care within the hospitals. These associations involve social work, nursing, health records, occupational therapy and physiotherapy. They are for the most part the front-line workers within the health care system in hospitals.
Some of the concerns that have been raised -- and I will briefly highlight the results of some further discussions that we have had -- are as follows: First of all, we are concerned that changes may have already been made to the legislation since second reading -- our concerns, I guess, follow from the Ontario Long Term Residential Care Association as well -- and that consumers and other stakeholders such as ourselves may be commenting on issues that are no longer relevant. I am sure you have heard this in other forms and from other presenters.
Second, we are concerned that in the consultation paper on the redirection of long-term care, no reference is made to the proposed acts which will have significant implications in the care and delivery of long-term care services. We would definitely like to see some overlaps, some reference made to how long-term care is going to be redirected and reformed vis-à-vis these three very important pieces of legislation.
With respect to the Advocacy Act, we are concerned that if a physician, during an assessment, determines that a patient is incompetent, under the proposed legislation the physician would be required to cease all medical procedures while an advocate is being sought; and this not only involves physicians, it involves many other health care providers. We are concerned that this could really delay treatment. It could delay assessment of treatment, any kind of health care process until an appropriate advocate or substitute decision-maker is appointed. The delay that this sort of diagnosis may cause in the administration of procedures might force health providers to ignore the patients' cognitive status and continue with treatment and assessment procedures. This is really putting the health care professional into a very serious dilemma. We think those reviewing the draft legislation and those working on the policies should take this into serious consideration.
The proposed legislation also assumes there is an adversarial relationship between patients, family members and health practitioners, and again, you have just heard it from the presenters before us.
It is also presumed in the Advocacy Act that there is a need for an advocate, and that this need is universal. I think we have to be very careful here. This is clearly not the case; not everyone requires an advocate. Clearly, the intent of the legislation is to find advocates for those who do not have them, but in the implementation it is very confusing for health practitioners and administrators to interpret the legislation before us. It might deter current and future providers -- and this is what we have been hearing -- from assuming the responsibility for care giving in an institution and in a home. Clearly, this is not the intent but we have to address this, and these are concerns that HCMT has heard.
The advocate as presented in the legislation is also generic in some fashion. Realistically, advocates will be required to work in a variety of social and clinical settings, and they will be required to have specialized knowledge of various procedures and medical practices. The legislation does not specify whether these advocates would be required to have specialized training, and we think this is clearly important and something that the legislation and policy should address.
In lieu of forming an Advocacy Commission, we are wondering if perhaps the Minister of Health, the standing committee and the other ministers may wish to consider the possibility of using existing resources within a ministry or within other government offices to oversee the implementation and the coordination of the legislation. We are wondering here if, for instance, the Office for Senior Citizens' Affairs and/or the Office for Disability Issues -- offices that already exist and have some expertise in this area -- might be involved in the implementation of the Advocacy Act. A viable option to the existence of an ongoing advisory committee might be to form time-limited, consumer-focus groups using the existing advocacy groups. The use of these groups might be more cost-effective and might provide a broader and more timely focus to issues related to advocacy.
With respect to the Consent to Treatment Act and Substitute Decisions Act, we are looking at how they might impact on the role of patients in research, and we have concerns that the proposed act may restrict the number of individuals who would participate in clinical studies and essential research. These areas are often forgotten about but clearly, from a medical point of view, are valuable. It is very important. Medicine and other medical procedures advance based on our knowledge, our understanding and our use of individuals in research.
Ethical standards already exist to protect patients in research activities and to prevent abuse, and these standards are monitored by the institutions undertaking the research, by professional regulatory bodies, through internal and external audits and accreditation processes.
There are concerns among researchers HCMT has heard from that the implementation of the proposed legislation would diminish research dollars and world-renowned academic and research endeavours in Ontario, and we would like to bring this to your attention as well.
In summary, from recent discussions we have had with our members and discussions with other organizations, we would definitely like to see a consultation process following amendments made to the draft legislation. We think it is necessary. It would not be meant or should not be meant to stall the passing of important pieces of legislation, but it could be used to overcome problems, difficulties in implementation that would be unnecessary. We also, in summary, would like to see some rethinking around the implementation of the Advocacy Act.
The Chair: Thank you. Questions and comments. We have five minutes for each caucus.
Mrs Sullivan: I appreciate this brief and, in particular since our last exchange, your underlining of the necessity after redrafting and the putting forward of amendments for an additional consultation period. We really feel that is very important.
I note that in your September 24 initial submission you indicated you were supporting the Ontario Hospital Association analysis of these bills and that you have subsequently added to those, and I think have made some good points. Yesterday the OHA along with various other organizations including the Ontario Medical Association, the Registered Nurses' Association of Ontario and so on, came before this committee and asked that the legislation be withdrawn and substantially redrafted for public comment. I would like to know, for the record, if the Hospital Council of Metropolitan Toronto concurs with that decision.
Ms Nettleton: Yes, we do.
Mrs Sullivan: I think some of the things I find most interesting and that we may want to explore in a subsequent session are some of the proposals you have put forward in relationship to a kind of Advocacy Commission that might be workable and cost-effective. They are interesting ideas.
While Mrs Carter appears to be under the impression there had been a consultation in relationship to a model, indeed there had been no consultation with respect to a model for advocacy services at all, nor is there any definition included in this act. The definitions for the role and work of advocates would not be done in any public forum but by regulation. I wonder if you would like to comment on the role of the advocate and how that role should be defined in a public way to make it a viable role.
Ms Nettleton: I think there are other ways of accomplishing the same task, and I do not think that externally we have been apprised, have been permitted the opportunity to be part of the policy that went into this legislation, from an implementation point of view. Clearly there has been a lot of discussion with a lot of individuals on the policy and the work of the Fram commission that led up to these pieces of legislation, but they are so important that the hospitals clearly want to see the legislation proceed but in a way that is going to work, that is going to benefit the individuals we are addressing this legislation to. Those are the patients, those are the consumers. Certainly the providers, in many instances, are advocates right now and do not want to be put in an adversarial position so that they are not their patients' or their consumers' advocates.
Mr J. Wilson: I want to begin by thanking you on behalf of my colleagues. I know that over the time I have been Health critic the Hospital Council of Metropolitan Toronto has been very helpful in providing data to us, the other opposition party and the government. To be fair, you have been very accessible and very helpful in helping us to come to grips with health care issues. I find that in your brief today.
I appreciate your update of the September 24 -- perhaps that is not surprising to you. I did notice your comment, though, that you felt the intent of the legislation was to find advocates for those who do not have them. If that is the belief out there, then certainly, as you have correctly pointed out, that is not the way the acts read. Having seen the leaked document released by the Liberals on the government's comments on this legislation and the urgency for this legislation as a priority for this government, I frankly do not believe that is the intent of the legislation. The intent of this legislation is that it be mandatory to call in an advocate. It seems to me that it is up to the discretion of the advocate how that person will act in that situation, because we have seen that there are no controls or accountability mechanisms in the bill.
Is that just your hopeful expression, that the intent of the bill is to have advocates where they are most needed, where people do not have families? We have certainly had a lot of families, a lot of lawyers and a lot of other people say, "If that's the intent, it sure doesn't read this way."
Ms Nettleton: Perhaps there is a need to go back to basic principles, just to ensure that, in redrafting or reworking these three pieces of legislation, the principles are well articulated, that we know why we are proceeding with these three pieces of legislation. With respect to the Advocacy Act, I do not think it is clear. A lot of organizations, including ours, are wondering what the intent is. Going back to the Fram report and other pieces of policy and correspondence leading up to these pieces of legislation, we assume that the original intent is there, but we are confused by what was put in front of us.
Mr Malkowski: Thank you for your presentation. When you were talking about a board for processing complaints, do you anticipate that this board be part of the commission, like the Law Society of Upper Canada and the College of Physicians and Surgeons of Ontario, a more internal board for processing complaints, or would you prefer it to be independent and separate? Could you clarify that, please?
Ms Nettleton: I do not think we have gone that far in our thinking, but there is not a form of addressing complaints in the existing legislation. That needs to be addressed.
Ms Akande: Thank you for the presentation and the information. I was interested in your suggestion that we perhaps use the machinery or the offices that are already in place in order to provide the kind of system that would provide care or advocacy. It was certainly the intention to provide a standalone system that would not be compromised. This is interesting to me because it is part of a discussion that had been held for a long time around the issues of advocacy with adult protective service workers who felt that their positions were seriously compromised by the way in which they worked, the groups for which they worked and the way in which their role had been set up. In light of the criticism with that example, and there are others I could give you, would you still support the machinery that is already in place for those with disabilities or seniors be used for advocacy?
Mr Gamble: I think the short answer is, yes, we would still support that. Part of our concern we have heard during our discussions over the last several months as this debate has continued among our members -- and I think that is apparent from what we have presented this afternoon. This did not terminate last September when the brief was originally prepared, but the debates have continued and there is obviously a great deal of interest. As Sharon has already commented, there is the concern of a clarity of intent, and also a concern with the additional bureaucracy, the additional requirements being added to a system. If there is an option or an opportunity to take an existing mechanism and have it function in the appropriate manner, and it may require some adjustment to do that, we recommend it should be examined as one possibility.
Ms Akande: And that having been examined, could I further that just a little? That system is already in place. It is not as wide as we would have liked it to be and certainly it requires and bears improving, but you recognize that even where that system is in place and is used quite heavily in some districts and areas of this province, there still are many complaints that there are people at risk who still require advocates. You would still, in spite of that, say the system was sufficient.
Mr Gamble: Let me clarify my understanding from our comments in debate. It is not simply accepting the current, it would be building upon that and beginning to use a model already in place as opposed to adding an additional approach. But where there are limitations, I think part of what needs to be examined is where those limitations are and their functional ability. If necessary, it would have to be addressed.
Ms Akande: I am concerned about two other things. One is that your reading of this advocacy legislation is that we have designed it in a way that the advocate is in an adversarial position, or at least so you have described it. Am I not correct? I am wondering why you infer that. It is not part of the information that I take out of the reading. I see the advocate as potentially adversarial, if required, but also supportive, helpful in many ways, not only to those in the medical profession but the families, the persons themselves. May I understand why and from what place you take the reading or infer that it is adversarial only?
Ms Nettleton: I think the adversarial part of it is really between the patient, family, consumer and the health provider. It really pits one against the other, not allowing the current health providers to be the advocate that they currently are.
Ms Akande: May I suggest that in some cases, the concern with the system is that regardless of the health provider's intent, he or she may be working (1) in opposition to the will of the patient or the client or (2) in opposition to the will of the family of the patient or the client. In that case, the way you state it, it seems to put the person in the medical profession in a prior position of greater importance. Was that your intent?
Ms Nettleton: No, and it clearly does not. The providers and I do not think the practitioners would see themselves in an elevated position. Clearly, they are in the professions they are in for the most part because they have a desire to help, treat, assess and do what it is they do best, and they do not want to be put into the situation where they are working against the people they are intending to help.
Ms Akande: And the advocate would just ensure that kind of relationship?
Ms Nettleton: Hopefully, if that is the way it worked. The providers whom we have spoken to find that in some situations this adversarial relationship might interfere with the way in which they would help and treat. That is their main concern.
The Chair: Mr Gamble, Ms Nettleton, on behalf of this committee I would like to thank you for taking the time out and coming and giving us your presentation today.
COUNCIL ON AGING, WINDSOR-ESSEX COUNTY
The Chair: I would like to call forward our next presenters for the Windsor Council on Aging. Just a reminder that you will be allowed a half hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow some time for questions and comments by the caucuses. As soon as you are comfortable, please identify yourself for the record and then proceed.
Ms Derbyshire: I am Carol Derbyshire and I chair the advocacy committee for the Council on Aging in Windsor.
Ms Johnson: I am Deana Johnson. I am the executive director of the Council on Aging in Windsor.
Ms Derbyshire: We are here to respond only to Bill 74. We would like to congratulate the province for moving forward in the area of advocacy; for ensuring that the rights of all its citizens, particularly the vulnerable, who may be unable to speak for themselves, are protected.
We encourage a thorough, yet time-efficient community consultation process and such subsequent revision of the legislation as is seen to be appropriate following input from consumers and concerned groups. There are areas of concern and importance that we would wish to highlight.
Under subsection 6(1), while the Council on Aging applauds the commitment to delegating a majority of the appointments to consumers, a statement may be needed to clarify the variety of consumers targeted. The most vulnerable consumer may not be able or willing to function at the commission level.
Section 35 says, "An advocate who discloses...information about a vulnerable person obtained in the course of his or her duties is guilty of an offence and is liable...to a fine...." The wording in subsection 29(4) states that information may be disclosed where bodily harm to another person is a concern. It is an offence, though, to disclose information where the advocate is aware of potential threatened suicide. This places the advocate in an impossible moral and ethical dilemma. While the right to self-determination is not argued, each case must be based on its own merits, without the advocate being placed in jeopardy.
Non-instructed advocacy: Self-determination and empowerment are the most important tenets upon which advocacy is developed. However, there are cases where vulnerable adults are unable to ask for assistance or unaware of the need for assistance, for example, older adults suffering from dementias, or an older adult being financially abused and neglected by a family care giver who is also the substitute decision-maker. There must be an avenue for such individuals to access advocacy services through a third party.
Subsection 6(2): The appointment of commissioners is crucial to the success of advocacy programming and they therefore must be selected with care. Commissioners should have a sincere interest in the rights of all citizens and a true understanding of the fundamental issues of self-determination. A process must be instituted whereby organizations such as the Council on Aging have a means by which to express their ideals, concerns, issues related to representation.
Under clause 7(1)(e), the Advocacy Commission is charged with the responsibility to "ensure that community development strategies are applied in the provision of advocacy services." While organizations such as the Council on Aging may not wish to be a part of the actual provision of service, they should be key players in promoting community development and liaison. The Advocacy Commission should understand and work closely in each community, with current efforts towards social planning and development.
Section 13: Representation on the advisory committee should include input from organization such as the Council on Aging. Representation on the advisory committee will need to have regional consideration: southwestern Ontario is often overlooked, while issues are quite different from other locations.
Under sections 21 and 22, the system to back up the rights of the advocate and client must be in place at the local level, for example, right of entry without a warrant at any time.
Under clause 36(a), the criteria for the use of non-profit community programs should be carefully developed with input from the community. No one strategy or design will work successfully across the province. The designated programs must be totally perceived as having no conflict of interest or risk the likelihood of losing credibility.
Under clause 36(b) the act must be specific on the selection process for advocates. If non-professional, community-based advocates are to be utilized, there must be provision for ongoing screening, training and extensive supervision. We understand that qualifications and standards for advocates will be established. We wish to reinforce the importance of this.
Continuing community education cannot be ignored in this process. Those individuals, institutions and organizations that are most affected should be a top priority, for example, rest home operators, nursing home administrators, local judiciary, law society, police and social service personnel.
The commission has the authority to develop regulations on a wide range of advocacy issues. These regulations must be clearly specified prior to the other acts coming into force; otherwise the commission will be faced with immediate obligations that it is not prepared to meet. If proclaimed on the same day, extensive changes will occur at once. It is imperative that affected individuals, institutions and organizations be adequately prepared. Therefore, a process or system for dealing with the potential immediacy of advocacy issues must be in place prior to the proclamation.
That is our presentation.
The Acting Chair (Mr B. Ward): Thank you very much. We have time for a couple of questions from each party.
Mr Mancini: Welcome to the committee. We have heard a lot of briefs regarding advocacy and some of them, like yours, encourage the government to have further consultation once amendments are made. You have dealt strictly with Bill 74 today. What would your opinion be of a pilot project?
Ms Johnson: I believe that in many communities pilot projects are definitely the way to go. As we said in our brief, each community is so different. What works in one community may not work in another. We have seen that in a number of other different structures that have hit across a province, where they do not work in Windsor because they are programs set up based on one particular area's design. Certainly piloting and easing in the projects is a way to go, and that way you can also use what is already available in a community. Many communities have services available, and some advocacy services. Learning how we can use them and build them into the structure can also be cost-effective.
Mr Mancini: Short of a pilot project in a limited number of communities across the province, would you in any way be concerned, after amendments were produced by the government in response to the briefs and consultation we are going through, if another period of time was taken by a legislative committee to actually hear from the public and interested parties on the amendments?
Ms Derbyshire: I think while we agree that we need to pilot projects, we need public consultation and we need to hear from consumers, that can be an ongoing process. Oftentimes what we see is a consultation process that begins and ends, a change occurs, we try a program for a while and then we start a new consultation process. Consultation should be ongoing. Ongoing changes can occur. Adaptations can be made.
One of the concerns we have would be to wait until it is too late and there are too many other problems that have evolved and all of a sudden we are back 10 years and we are starting over again. I do not think we want to wait another 10 years before we implement; we can start implementing slowly. It does not mean we have to have the whole package tomorrow, but we need to start looking at it.
Mr Mancini: I kind of like what the witnesses are saying to the committee. I think what the witnesses are saying is that the accomplishments we foresee are in fact important and needed, too important to be done hastily and shabbily and too important to be thrust upon communities that are not prepared to implement them properly. I think that is what some members of the committee have been saying, and I am happy to hear that this particular delegation is saying the same things. I agree with your final comment that just because we want more consultation and appropriate implementation, it does not necessarily mean that we want a 10-year waiting period. I think what you need can be accomplished.
The other thing I have learned in Parliament is that it is not necessarily proper to speed legislation through, because even those of us who have had only 18 months' experience in the Legislature know how difficult it is to go back to reopen legislation that has been passed. Governments just do not have the time and, on some occasions, do not have the will to do so. When we are passing important legislation, I think it is important for us to be wary of that and to be wary of the fact that we must be proficient the first time around.
Mr Sterling: Thank you very much for coming all the way to Toronto to present this big brief. I have some concerns with regard to Bill 74 in that, although they mention a volunteer advocate, there does not seem to be any definitive line as to when a professional advocate would be utilized or called in and when a family advocate would be adequate or when that would fulfil the purposes of the person who is incapable of making the decision. When we tie that to Bills 108 and 109 -- I do not know if you have had a chance to read them or not -- it is not quite clear whom you call in. Do you have any concerns about how you utilize volunteer advocates in this legislation?
Ms Johnson: We have had many conversations related to volunteer advocates and their use, and certainly there is a role for a volunteer advocate in a continuum of advocacy service. That is why I say I believe if you are putting a program into a community you need to look at what is already available in the community. Many communities have volunteer advocates already in place. That does not preclude the need for professional advocates. If advocacy is haphazardly presented, then we can fall into more problems and more dire circumstances can occur. To have a combination of professional and volunteer advocates working together in a continuum can be a very effective tool and again very cost-efficient.
Mr Sterling: How many people live in the Windsor area now?
Ms Johnson: Approximately 200,000 in Windsor proper.
Mr Sterling: Under this legislation they are predicting they would have 150 advocates for the province. That would mean you would probably have three advocates for the whole city of Windsor. Do you think that would be adequate in terms of dealing with all the various institutions and the various needs that are put into Bills 108 and 109 for these people?
Ms Johnson: When is anything ever adequate or enough? Certainly three is more than what we have now. We have a core group of volunteer advocates in an organization in Windsor. We also have an ombudsman program that works within Windsor. Those are very effective programs. However, if we have advocacy that works only with specific groups and can only work in a specific framework and does not necessarily have legislation to fall back on for authority, then we have no clout with those people who are the most vulnerable. Three advocates with authority are a lot more power than an army of advocates with no authority. The legislation can give the power to the individuals who can then work within that continuum.
Ms Akande: Thank you for your presentation and for the information. The combination of volunteers to act as advocates and those who would be put in place through this legislation with, as you describe it, authority: Certainly they would operate as a continuum, or is that what you envisage?
Ms Johnson: Certainly.
Ms Akande: Yes, as a kind of reference, because one of the things we emphasize is that everyone is in fact a small-a advocate for those who are most vulnerable, so it should be assumed.
I somehow read your response to Mr Mancini's question a little differently from the way he does. What I thought you might have been saying, and please correct me if I am wrong, was that you encourage the implementation of the legislation, recognizing that ongoing consultation and refinements may be made while it is enacted. Am I more --
Ms Johnson: Certainly, and that is in the notes, that while we encourage consultation, it has to be time-efficient. It has been dragging for a fair amount of time.
Ms Akande: I just wanted to clarify.
Mr Mancini: A couple of months of hearings would not hurt. Go ahead.
Ms Johnson: You are just being honest.
Ms Akande: We have put enough words in their mouths.
The Chair: Are you done, Miss Akande?
Ms Akande: I am finished.
The Chair: Thank you very much. No further questions or comments? Mrs Carter.
Ms Carter: I have a comment and a question. You are querying the selection and training of advocates, and I think the intention there is to leave decisions about that to the actual commission when it is set up so it will in fact be arm's length from government and as free as is possible of conflict of interest as regards any government department. I think that is why that is left somewhat vague in the act.
Of course, the thing that is specified is the composition of the advisory council, in section 15 of the act, which at 20 or so members cannot represent everybody, and that of course is the body that will select the people who will eventually be on the commission itself. How much representation for seniors do you see on that advisory committee as it is set out in the act?
Ms Johnson: Certainly representation from those who are family members, from seniors' groups themselves, but we have to be careful in lumping seniors as one group. There is a wide variety of seniors' groups from the well older adult to the frail or the more frail. Certainly when you get into a position where you are on an advisory committee that has a fair number of meetings, there is a certain frailty that no longer is functional. That is the reality. That is where the ongoing consultation comes in. If you have somebody on the advisory committee who has access, either through a council on aging or that type of a body, to information from the frail, then you are getting that information on an ongoing basis, and I think that is important.
As to a specific number, I do not think we can pinpoint a number of older adults any more than we can the physically disabled. It depends on what particular composition is functional, I think.
Just as important as that is the regional issue. It is very disconcerting for those in southwestern Ontario to have an advisory committee that is primarily from the Toronto triangle area, because the issues are different. Northern Ontario must be represented, because its issues are different. Rural and urban issues are equally as important on an advisory committee.
There are a lot of issues involved in developing it and we understand that. We are not naïve enough to believe that we could choose whom we are going to have based on one group's input, but certainly there are a number of organizations that have a more widely based input and perhaps they should be considered as at least giving names or suggestions.
The Chair: Ms Johnson, Ms Derbyshire, on behalf of this committee I would like to thank you for taking the time out to come down and give your presentation today.
Having no further presentations today, would you like to deal with your motion now, Mr Sterling?
Mr Sterling: I believe that all members have received a copy of the motion.
I move that, given that all parties and presenters before the standing committee on justice have acknowledged that major changes are necessary to improve and enhance Bills 74, 108, 109 and 110, the standing committee on justice reconvene for public hearings not earlier than two months after government amendments to these bills from the Ministry of Citizenship, the Ministry of Health and the Ministry of the Attorney General have been tabled and widely circulated, to enable all interested parties the opportunity to study and assess the government's amendments before the committee proceeds with clause-by-clause examination of the bills.
The Chair: Mr Sterling moves --
Mr Sterling: Just before you repeat that, instead of "given that all parties" -- I guess it is the fourth or fifth word in my motion -- I would say "given that many parties", because it is not true that all parties raised it or complained about it.
The Chair: Mr Sterling moves that given that many parties and presenters before the standing committee on justice have acknowledged that major changes are necessary to improve -- dispense?
Mr Mancini: Dispense.
The Chair: Discussion?
Mr Sterling: I must say at the outset that if the members of the government party would prefer to discuss this motion either tomorrow or on Friday -- unfortunately I am not going to be here on Thursday -- I would be quite willing to postpone the debate until that time if they wanted to consult and that kind of thing. Would that be your preference?
Mr Wessenger: Yes, I think it would be preferable if we could have some discussion.
Mr Sterling: Which would be your preference, Friday or tomorrow?
Mr Wessenger: Friday, I would suggest.
Mr Sterling: Okay. Then I would table the motion at this time and ask that we raise the issue then.
Mr B. Ward: Friday morning?
The Chair: Friday morning?
Mr Sterling: Yes. We are just sitting Friday morning, I believe. We are not sitting on Friday afternoon, I hope.
The Chair: We will do it at 12:30, after our last presenter.
Mr Sterling: Yes, I think that would be the best time.
The Chair: Okay. Mr Malkowski?
Mr Malkowski: I just wanted to follow what we were discussing from the morning, to the person who is in the psychiatric institution who wanted to come to speak to us. Whatever happened? We needed a report from the subcommittee just to report back to the whole committee on the outcome of that.
The Chair: The subcommittee met and there was no report coming back because we decided to stay with the status quo where he would be notified again that he could come and give his presentation if he so chose. We gave him the option of doing the teleconferencing or submitting a written brief. So there was no report.
Mr Malkowski: Okay. That is fine.
The Chair: Seeing no further business before this committee, we stand adjourned until 9:30 tomorrow morning.
The committee adjourned at 1634.