CITY OF TORONTO DEPARTMENT OF PUBLIC HEALTH
CANADIAN ASSOCIATION FOR COMMUNITY LIVING
ST JOSEPH'S HEALTH CENTRE, TORONTO
CANADIAN ABORTION RIGHTS ACTION LEAGUE
QUEEN'S UNIVERSITY, FACULTY OF LAW
ROYAL COLLEGE OF DENTAL SURGEONS OF ONTARIO
CONTENTS
Wednesday 11 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
B. P. Egier; J. R. Hewson
Vision Council of Canada
John McArthur, president
City of Toronto, Department of Public Health
Bonnie Bean, supervisor
Scheduling of Presenters
Canadian Association for Community Living
Diane Richler, executive vice-president
Dulcie McCallum, consultant, government affairs
St Joseph's Health Centre, Toronto
Sister Marcella Iredale, director, mission education
Dr Doug Crowell, chair, ethics committee
Bridget Campion, clinical ethicist
Catherine Cary, unit administrator, ICU-CCU
Canadian Abortion Rights Action League
Joan Toogood, board member
Jane Holmes, executive coordinator
Queen's University, faculty of law
Kelly Reitsma, student
Violet Putnam, student
Lenore Hodgson, student
Royal College of Dental Surgeons of Ontario
Dr Richard Beyers, president
Dr Minna Stein, deputy registrar
Alan Bromstein, legal counsel
Scheduling of Presenters
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
Johnson, Paul R. (Prince Edward-Lennox-South/-Sud Hastings ND) for Mr Fletcher
Mancini, Remo (Essex South/-Sud L) for Mr Sorbara
Marchese, Rosario (Fort York ND) for Mr Fletcher
Sullivan, Barbara (Halton Centre/Centre L) for Mr Chiarelli
Also taking part:
Spinks, Trudy, Ministry of Citizenship
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Fenson, Avrum, Research Officer, Legislative Research Service
The committee met at 0950 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.
The Chair: I call this meeting of the standing committee on administration of justice to order. I just remind you that we have a revised schedule that will be handed out to all the members some time, hopefully first thing, this morning.
B. P. EGIER
J. R. HEWSON
The Chair: I call forward our first presenters, Dr Brian Egier, attending staff, intensive care units, Hamilton Civic Hospitals. Good morning. 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.
Dr Egier: Good morning. I am Brian Egier. As mentioned, I am a specialist in intensive care medicine and I practise in Hamilton, Ontario.
This is the first time I have ever spoken before such a committee, and I must admit I made the decision to do so with some trepidation. However, upon examining the proposed Bills 74, 108 and 109, it was very clear to me that there were serious problems in this legislation which would significantly impair my ability to provide timely, humane and appropriate care to the people who depend on me to do so. This is not only my conclusion but that of many colleagues I have conferred with, all of whom provide tertiary-level referral care of an acute nature to the people of Hamilton and, indeed, central western Ontario.
One of my colleagues, Dr John Hewson, is here with me today.
Dr Hewson: I am John Hewson, chief of the department of critical care at the Hamilton Civic Hospitals.
We realize that the focus of these bills is indeed a difficult one, balancing what are sometimes conflicting interests: those of the patients' right to autonomy on the one hand, the care givers' duty to provide appropriate care and assistance, and third, society's responsibility in ensuring for the welfare of its citizens. We applaud the intention of trying to address the complex issues involved, but we also feel very strongly that in practice, many of the proposed solutions will actually do more harm than good. We feel more people are likely to be hurt than protected by these bills.
That is not to say that we find fault with all aspects of these proposed bills, for indeed the formalization of a person's ability to name a substitute decision-maker is welcomed and would indeed help to alleviate many difficulties faced today by patients, families and care givers. However, we believe there are a number of serious flaws in this legislation, and in the next few minutes we will focus on a handful of concerns emanating from Bills 74 and 109, the Advocacy Act and the Consent to Treatment Act, and try to present some examples of the disastrous implications, we believe, of enacting these bills in their present form.
Dr Egier: The first area we would like to address is the issue of delays in treatment that will become mandated in instituting necessary therapy for patients. As an example, an elderly woman, previously functioning independently, is brought to hospital by her daughter. She appears unwell and is confused and disoriented. From the daughter's story it is likely that her mother has pneumonia. As is not uncommon in this age group, confusion is an early but totally reversible manifestation of such a severe infection. However, because of her confusion I cannot obtain a valid consent and am therefore unable not only to initiate treatment but in fact even to give her oxygen to alleviate her shortness of breath. I cannot even examine her or get a chest X-ray to confirm my tentative diagnosis.
Instead, I am required by law to call in an advocate to ask this confused, disoriented and toxic woman whether she would like to contest my label of her being incapacitated, because by definition she would not be able to appreciate the consequences of answering yes to the advocate's question; the patient would likely have at least a 50-50 chance of answering yes.
In such a worst-case scenario I would then be unable to offer anything but sympathy to this woman for perhaps as long as a month while her case winds its way through the bureaucracy. Of course I can always declare the situation an emergency and say that I believe she would suffer serious bodily harm within 12 hours without treatment. The problem here is, what if I cannot honestly meet this arbitrary and unrealistic definition of an emergency? I am then bound to stand by and watch the patient deteriorate either until the bureaucratic process is complete or she is finally so ill that it does become an emergency. The latter is the more likely scenario, but it is reached only by being forced to stand by until the patient is so sick that her life is in immediate danger. That, in our opinion, is immoral. That is not what we physicians are trained to do. Moreover, I do not believe that is what you would want to happen to your mother, your father, your spouse or whomever you hold dear to you.
Unless an emergency is declared, the family in this situation is just as paralysed and impotent as the physician and would likewise be forced to watch the loved one suffer needlessly. This process forces the physician either to distort the law and perhaps lie about declaring an emergency, or to stand back and allow patients who depend on their care givers' professionalism and simple humanity to deteriorate while the bureaucratic process edges onwards.
Dr Hewson: Example 2: Let's say we have in fact declared an emergency in the case of this woman with pneumonia. Her lungs are failing and we must put her on a mechanical ventilator lest she otherwise die. Part of our course of therapy would be to sedate her in order to make her comfortable and allow us to help her. But alas, at 72 hours our ability to treat her on the basis of an emergency ends. Do we declare another emergency or do we wake her up and take her off the ventilator and try to reassess her competence at the risk of allowing her to deteriorate? If she is still incompetent, do we then have to call in an advocate and return to the same dilemmas mentioned before? At the very least the proposed law is extremely unclear; at worst it is incompatible with the realities of providing safe, competent and humane care to very large numbers of people.
Dr Egier: Even if the patients in these examples fortuitously happen to say no to the advocate perhaps precious hours would have elapsed, or at the very least the patient is left in pain, discomfort and danger. Moreover, the slowness of the process would impact on the availability of scarce resources for other patients awaiting help and assistance. These cases point to a fundamental flaw in the rationale behind the job to which the advocate is directed.
If I may, I will just stand up and point out a problem on a chart. My apologies for the size of the writing on it. I will take you through the scenario.
Mr Poirier: It is a doctor's handwriting, right?
Dr Egier: This is my very best handwriting.
The patient has been declared incompetent. The advocate is called in. The advocate says to the patient: "You're being labelled as being incapacitated. Would you like to challenge this finding?" There are two possibilities.
The first is that the patient is truly competent and has been unjustly or inappropriately labelled as being incompetent, in which case presumably the patient will say, "Yes, I would like to contest this," an appeal process is undertaken and hopefully the system will work and that patient will be protected. This is the group of people that I believe is trying to be addressed by this legislation.
There is another group of people, however, that really is incompetent. The problem is that by the fact that they are truly incompetent, by definition they are also going to be unable to appreciate or understand the implications of that label and the consequences of the response they are being asked to give to the advocate. In other words, they do not understand the difference between saying yes or no to the advocate's question: "Do you in fact want to contest this?" Therefore they have at least a random chance of 50-50 in answering yes or no to the advocate's question. In fact, I suspect it will be a little bit more than 50-50 who say yes, because subtly or not so subtly the advocate may well bring a bias into that room where he or she is alone with the patient, and that bias is very easily transmitted. Let's say the patient says, "No, I don't want to contest this." There is still some delay, perhaps in the course of hours and hopefully not too much more than that. Is it optimal, is it fair, is it humane to the patient? These are questions we must ask.
But there is another group of patients that in its incapable state fortuitously happens to not understand the implications of saying yes. In fact, although they are truly incompetent and will ultimately be found to be incompetent, they say, "Yes, I want to contest it." It is in this group of patients where there is extraordinary potential for incredible harm being done from the standpoint of their safety, their comfort and their dignity.
The problem is that the blue and the red groups of patients will extraordinarily vastly outnumber the green patients, perhaps by orders of magnitude. In other words, to coin an old phrase from medical history, the cure is worse than the disease.
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While there may be specific types of situations in which greater protection of vulnerable people is needed, the breadth of these bills does not allow for a differentiation between the many different types of interactions between patients and their care givers. In many of these instances this legislation could harm more people than it might help.
Dr Hewson: Costly expansion of the bureaucracy: While significant amounts of money will be needed to create and run such offices as the Advocacy Commission, including the advocates themselves, in order to provide for equitable and timely access to anyone anywhere within Ontario, we would like to mention here only the office of the public guardian and trustee, indeed to concentrate only on the relatively narrow function of gathering and presumably processing and reviewing documentation on those patients who have met the criteria for emergency intervention.
The sheer volume of paper flow from this function alone would be staggering. We estimate that in Hamilton alone, and considering only intensive care unit admissions, there would be approximately 2,000 to 3,000 patients per year, each of which would involve at least 10 or more independent health care practitioners, thereby producing roughly 20,000 to 30,000 submissions per year, or 60 to 70 per day, or 3 per hour 24 hours a day, and that is only in Hamilton.
That, I remind you, is only a limited proportion of the applicable patients in only one midsized city in this province. We would not pretend to be able to calculate the cost of such an extension and the ongoing cost of maintaining your bureaucracy mandated by such legislation. The next question of course is, what would be done with such massive documentation and for whose benefit is this bureaucracy functioning?
Dr Egier: Substitution of an adversarial, dictatorial process for a consensual discussion: Decisions regarding care for an individual can sometimes be difficult and involve varying perceptions, values and priorities among both care givers and those who know the patient and are attempting to speak on his or her behalf. When such problems arise, we feel the best way to resolve such difficulties is usually via discussions between those involved in the care of the patient with their attendant expertise and goodwill, and the family or other substitute decision-makers who in turn bring to the discussion a knowledge of the patient's life and values as well as a commitment to the best interests of their relative or friend. In almost all such cases, common sense, goodwill and open discussion will ultimately result in decisions with which all involved are comfortable. Occasionally outside help, such as through the use of clinical ethics committees, for instance, can be utilized to everyone's benefit.
We are seeing here a proposal to take decisions away from those at the bedside, including in particular family, and to substitute instead the impersonal, hands-off and perhaps dehumanizing alternative of a bureaucratic committee. Furthermore, rather than arrival at a consensus among family members who initially may have honestly different perceptions of what is right, the solution proposed here is a dictation by a bureaucracy more concerned with making a decision than with any possible long-term emotional damage to the lives of the survivors.
While the personal, involved, real-life approach is not always perfect, we believe our goal should be to work together to better that process rather than to substitute an impersonal, adversarial process in its place. I would rather have people with common sense and goodwill deciding on my behalf at the bedside and seeing me as a person, appreciating my unique circumstances and feeling for my predicament there than well-meaning but distant, detached and unknowing bureaucrats deciding by decree over my future at some distance.
An individual's rights are not best protected and his or her best interests are not best endured by dehumanizing this process.
Dr Hewson: Organ transplantation: We are concerned about the specific inability of substitute decision-makers to consent to organ donation for transplantation. Unless another act would supersede Bill 109's prohibition -- in which case, why is it there? -- then the detrimental effect on the entire transplantation program in Ontario would be devastating.
Dr Egier: Confidentiality: Beyond the extraordinary rights of entry afforded to advocates, there is in addition a right of access to the records of patients which can be accomplished via two routes. First, the patient can consent to the advocate's access. That is fair enough. However, the advocate may alternatively gain access via a directive from the commission without patient consent and indeed may involve access to information on patients who have not even been involved with the advocate or, even worse, have refused such involvement. The commission may authorize such access when such information, in its view, may be useful to further political or social goals. Such goals, of course, may not be shared by the patient.
We have here a fascinating but frightening paradox. The purpose of this legislation is to further the rights and dignity of vulnerable individuals. In practice, while some individuals may well benefit, the legislation also provides for an extraordinary infringement upon the civil rights of other individuals. In fact, the individual almost ceases to exist, becoming instead an example of a disability, a disease or a disorder. Individual rights to privacy will become potentially subservient to the political and social agendas of special-interest groups.
Beyond these incredible powers of search and seizure, the rules surrounding secrecy regarding the information gleaned from the advocates' or the commission members' work remind me of the saying that, "A secret is something that you tell one person at a time." Such information could spread quite widely, limited only by what the commission regards as appropriate for its political and social agendas.
Dr Hewson: In summary, we have highlighted issues of delay in treatment, costly expansion of the bureaucracy, substitution of an adversarial, dictatorial process for a consensual discussion, organ transplantation and confidentiality.
To conclude, while recognizing that our health care system is indeed not perfect, we feel that these proposals would stand to hurt more people than they might help. There is a basic principle in medicine that the cure should not be worse than the disease; first of all, do no harm.
We believe these proposed bills should be withdrawn and a process initiated which involves input from all the players in the system, with their varying perspectives and expertise. We believe there are viable and workable means of enhancing the protection of individuals but that these bills are not the answer. We believe we must go back to the drawing board and broaden the base of contributors, building upon expertise, experience, goodwill, common sense and even trust. Thank you. We would be happy to receive any questions.
The Chair: Thank you. Each caucus has about four minutes for questions and comments.
Mr Poirier: You started off by saying that you somewhat hesitated about coming forward. After reading your presentation, thank God you did not hesitate and you did come forward. I think the points you made have been made by many, many, many health professionals around -- nurses, doctors and whatever -- and we sure do not need much more convincing to try and put ourselves in your shoes to find out that this is going to be a hell of a nightmare. I do not blame you for coming forward.
Could you expand a bit on the organ transplantation issue, because I had presented a private member's bill that created the MORE system to get organ transplants, the multiple organ retrieval and exchange, and if I am not mistaken, you are the first ones to bring this forward, and this is quite a nightmare. How do you see it in the practicality? Could you expand a bit on that point, number 4 on page 9?
Dr Egier: Sure. I have it in front of me, so I will do it. In Bill 109, I guess it is called section 15, it states that,
"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:
"1. A procedure whose primary purpose is research.
"2. Sterilization that is not medically necessary for the protection of the person's health.
"3. The removal of regenerative or non-regenerative tissue for implantation in another person's body."
In our reading, that makes it impossible to get a consent from anyone for donation of organs.
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Mr Poirier: I cannot imagine that is what the government's intent was. Surely this is the type of support you have. I would not mind getting a response from the parliamentary assistant on that. We have a lot of work to do still in organ transplants; it is not widely accepted and widely available yet, and if this is going to further reduce it, this is extremely upsetting news to you. Maybe the parliamentary assistant, after getting some sound advice from legal counsel, will be able to give us some ideas.
We will let him consult first, but while they are waiting for the answer, I just wanted to put a smile on your face. I am an amateur calligrapher, and this is the first time I have been able to read a doctor's handwriting. I am quite impressed. I did not know that doctors could write. This is really neat, so I must congratulate you. I think I will keep a copy of this and frame it.
Mr Wessenger: I believe you have a question for me?
Mr Poirier: Yes, I do. You were not able to understand, I guess.
Mr Wessenger: No. We were discussing probably the issue you wanted to ask the question on, but anyway.
Mr Poirier: Okay, it is the organ transplantation issue the doctors have brought forward.
Mr Wessenger: Let me just say that under the Human Tissue Gift Act you cannot have an organ donation from an incapable person, quite rightly so, I think. I would be very surprised if the doctors are saying we should change that act to say that an organ transplant can be taken from an incapable person. Certainly once the person is dead the organ transplant can be given by the executor, and that is the normal situation, and a capable person, of course, can consent to an organ transplant. This is the existing law, and I would be surprised if the medical practitioners here would be advocating to change that existing law.
Mr Poirier: What if some person who is deemed to be incompetent in the emergency room comes in and has his or her driver's licence consent form, but they seem to have that person as incompetent?
Mr Wessenger: That is after death. That of course is perfectly legitimate.
Mr Winninger: That is when you are dead.
Mr Wessenger: We are talking about when people are alive prohibiting organ transplants.
Mr Poirier: Okay. Your response?
Dr Egier: It is very clear that the only people we would in fact be looking to organ donorship in are people who have in fact been declared brain-dead.
Mr Wessenger: There is nothing in this act that prohibits that. This is just relating to live people who are incapable, not dead people.
Dr Egier: I was not aware of anyone asking for organs from live people, and therefore I wonder why it is in there in the first place. I am not aware of anyone anywhere seeking organs from live competent or incompetent people.
Mr Winninger: What about donations?
Mr Wessenger: It is there very obviously because with capable people you often have a consent, for instance, from one relative giving a kidney to another relative, and that happens in several instances, as you are aware, like a kidney transplant. What this would prohibit is of course that kidney transplant from -- recognizing the fact that some legal act had taken a kidney transplant from an incapable person to transplant it to a capable person.
Mr Poirier: Fair enough.
Mrs Sullivan: Just as a point of order, Mr Chairman: I wonder if as these hearings go along, because there has been quite enormous misunderstanding about this section of the act, when the recap is being done, the parliamentary assistant would ensure that there is solid briefing of the entire committee relating to this section and indeed the need for that particular section of the act, given that part of it is covered by the Mental Health Act.
Mr Wessenger: I certainly think it would be an excellent idea after the public hearings and before we go into clause-by-clause that we have a full briefing on each act before we go into the clause-by-clause.
The Chair: Further questions or comments?
Mr Sterling: I found your presentation quite good, because it not only dealt with the technical problems of the act in terms of what is treatment etc, but it also dealt with the greatest fear I have, that it is going to gum up the system so badly that the system is not going to be able to treat as many people as it has in the past. We know how there are problems with access to the system at this time.
Given that some of the technicalities I think will be remedied in Bills 108 and 109, is there anything you could suggest to the government to narrow the focus of the advocate to the cases where there might be some justification for having an advocate intervene into the health care situation?
Dr Egier: I very much wanted to come today with some suggestions to be concrete and helpful. The problem is that, as you clearly realize and as we fully appreciate, these are very complex issues, and I hesitate to sort of spend 15 1/2 seconds trying to sum up very complex and difficult problems. Clearly that is one of the major issues: How can we in fact try to identify the green patients so we can help them and we can protect them but at the same time not hurt the vast majority of people going through the system, who in fact do not fall into that category at all. I do not have an easy solution to how to do that. I guess I would first ask Dr Hewson if perhaps he has a suggestion, and second -- perhaps this is little bit unusual -- in the process of what I hope will be a reassessment and rewriting of these bills, I would certainly be more than happy to offer my services in terms of the perspective of acute care medicine to think these things out, to discuss them and to perhaps come up with some more practical and fairer kinds of solutions.
Mr Wessenger: Have you read or are you aware of the comments the Minister of Health made to this committee on December 10, 1991?
Dr Egier: No.
Mr Wessenger: Okay, perhaps just for clarification I should indicate to you that the Minister of Health said with respect to the emergency provisions, first of all, the 12-hour period should be deleted. She has also said that the emergency provision should be amended to permit alleviating severe pain, and third, that the emergency provision should be amended to provide that emergency treatment will not be discontinued in those exceptional cases where no substitute decision-maker is available within the 72-hour time period. So those are three areas where the provision will be amended.
Mrs Sullivan: Let's have those amendments so everyone can see them.
Mr Wessenger: The Minister also indicated that she would welcome suggestions for improving and clarifying the definition of "emergency," so if you have any other specific suggestions in this regard, we would certainly appreciate receiving them.
Dr Hewson: I do not have any quick-fix answers, likewise. Perhaps one way to try to define that group that is truly competent but being labelled incompetent, which I believe is the group towards which this legislation is directed, would be to try to examine the sources whence arose the concern over this as a social issue in the first place. Clearly there are segments in society who have decided that there was a need for this type of legislation, and perhaps examination of the root sources that led to the concern might help define a little bit more clearly the subareas within the health care system in which there appears to be a problem relative to autonomy and competence and incompetence.
I guess the concern Dr Egier and I have is that this appears to be an exceedingly broad net for a problem the magnitude of which we have really very little information on. I have heard nothing in the popular press to help me understand the magnitude of the problem, and maybe we need to examine the problem itself in a little more detail to perhaps come up with a somewhat more finely tuned solution.
Mr Sterling: Mr Chairman, on that specific point, I asked the Ministry of Health, I believe three and a half or four weeks ago, for this very type of information and have not received a response from them as to the statistical evidence of abuse problems, of vulnerable people being taken advantage of, and I was just wondering when I might expect the reply.
Mr J. Wilson: I think if you check the record, Mr Chairman, some two weeks prior to that I asked a similar question.
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The Chair: I think we have an answer from legal counsel here.
Ms Spinks: I believe that question was, in fact, addressed to our ministry, the Ministry of Citizenship. The information you have requested is being completed and I believe they want it to be as full and complete as possible. It should be available in the next day or two.
Mr Winninger: I was interested in your chart and I was also interested in a statement made on page 10 that, "The individual almost ceases to exist, becoming instead an example of a disability, a disease or a disorder." In fact, we have seen a lot of the walking wounded come through here in the past few weeks, people who have been lobotomized, people who have received electroconvulsive shock, people who are suffering the deleterious effects of drug therapy even now.
What I heard from their evidence was that these people felt victimized. These people felt that through the benevolent paternalism, if you will, of the medical profession they were given treatment they never knew the consequences of, the side-effects of, the long-term effects of. Surely you would agree with me that the intervention or assistance of an advocate is a small price to pay to ensure that these vulnerable individuals will never have to go through the kind of psychiatric abuse they have suffered in the past.
Dr Hewson: I think it goes without saying that I would agree 101% with every word in your comments. My further comment to your statements, again, with which I fully agree, suggest to me that perhaps, as a furtherance of my comments a moment before, the area wherein the problem may be lying may be related more to areas of psychiatric therapy and that aspect of medicine, for example, than the more organically related things such as a car accident or pneumonia or issues along those lines.
I guess that is in keeping with my comments of a few moments ago suggesting that maybe we need to see which areas of health care appear to be the ones in which these problems have arisen and perhaps tailor the legislation to deal with the areas where indeed there are true problems rather than perhaps casting a net that is sufficiently wide to pose problems in other areas of health care where this type of issue is not an issue.
Mr Winninger: You might want to talk to Dr Cleghorn, who spoke yesterday, because I do not think he would agree.
Dr Egier: I do not believe we are blind to problems in the system. There is no question that there are some individuals who have in fact suffered under our present system. There is no question that there are cries for help.
My concern is your comment that surely an advocate is a small price to pay. I believe that perhaps we should be asking that question of the countless thousands of people who will suffer badly, perhaps because of an attempt to correct a problem which may be relatively isolated and may be identifiable and more clearly dealt with rather than a broad blanket across the entire health care system of this province, which may, as I have mentioned, help some people and may badly hurt many more.
Mr Winninger: Just one note then. It was not just psychiatric evidence. We did have a lady here Monday morning who was, she said, a perfectly normal healthy baby in England until she received a particular vaccine. As a result, she came here in a wheelchair.
Dr Egier: I am not sure I want to get into a debate about specific patients.
Mr J. Wilson: What has that to do with having an advocate?
Mr Sterling: She would not have an advocate --
Mr J. Wilson: She would not have an advocate because she was perfectly --
Mr Winninger: A question has been put to me. She suggested that advocates could provide assistance to children in those circumstances. That was her proposal.
Mr J. Wilson: And at the end of her presentation she suggested you scrap the bills.
The Chair: Thank you, Mr Winninger. Dr Egier and Dr Hewson --
Interjections.
The Chair: Order, please, Mr Wilson. Dr Egier and Dr Hewson, 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.
VISION COUNCIL OF CANADA
The Chair: I would like to call forward our next presenters, from the Vision Council of Canada. 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, please identify yourself for the record and then proceed.
Mr McArthur: Mr Chairman and members of the committee, good morning. My name is John McArthur and I am here this morning in my capacity as the president of the Vision Council of Canada.
The Vision Council of Canada is a non-profit organization representing the retail optical industry in Canada. Our member companies account for a significant number of retail optical outlets in Ontario. In 1991 VCC members and supporters employed over 1,000 people in the province, including more than 25% of the province's licensed opticians.
The VCC's mandate is to ensure that quality eye wear products and services are available to the public at a reasonable cost.
The focus of our brief this morning is Bill 109, An Act respecting Consent to Treatment. Bill 109 lists in its schedule, in addition to professionals covered by the Health Disciplines Act and other medically related acts, the Ophthalmic Dispensers Act. This is the legislation governing our optician employees.
As stated in a memorandum written by Ministry of Health assistant Deputy Minister Michael Ennis on August 19, 1991, the subject of which was advocacy, substitute decisions and consent to treatment, Bill 109 "sets out clear rules on consent to treatment administered by all health care providers in all health settings. It affirms the right of everyone to be fully informed when making health care decisions, enables people to express their wishes in advance with regard to treatment, and ensures that decisions made on behalf of incapable persons are respectful of their rights."
We believe that the government's intention with this act to enshrine the rights of individuals concerning health and medical care decisions in legislation is commendable and worthy of support. Our concern, however, lies in the expansive scope of the legislation and the potential medical judgements that the legislation would require of our members' optician employees in commercial establishments.
Opticians receive no formal medical training and are not health care providers in the traditional sense. Their course of study or apprenticeship does not include training to determine an individual's mental capacity. Opticians do not perform eye examinations, nor do they prescribe corrective eye wear. They do not work in a health care setting.
Opticians are professional technicians who provide glasses or contact lenses on the basis of a prescription written by an optometrist, an ophthalmologist or a general practitioner, individuals who are licensed to examine and prescribe corrective vision apparatus.
Suppose for a moment that an individual with Alzheimer's disease arrives in a VCC member retail outlet bearing a prescription provided by an authorized prescriber. Is it not the prescriber's responsibility, under this act, to make his own decision on this individual's capacity before providing treatment, ie, examination of the eyes and provision of a prescription? If so, should that decision not be valid for the purchase of the actual glasses themselves?
As written, Bill 109 could require the optician to overrule the prescriber's decision that an individual is capable with respect to the very treatment for which the OD or MD has issued a valid prescription and to not fill the prescription should that individual display any sign of incapacity. It would require the optician, with no medical training, to overrule the judgement of an individual who is qualified to make these decisions. If a health practitioner who orders tests or X-rays is responsible for ensuring that consent has been obtained, should not the same decision-making structure apply to health practitioners who prescribe corrective eye wear?
Another factor we believe should be considered is the manner in which many retail optical outlets operate. They are not structured like medical offices. There are no private offices, nor is there likely to be an area which would allow a private discussion with a customer about a possibly very sensitive and personal issue. In addition, in many instances the first contact an individual has when he or she enters an optical establishment will be with a frame stylist, or a non-optician in any event. These lay individuals are not covered by the acts listed in the schedules and also have no medical training. Their function is to assist in the selection of a pair of frames which will be aesthetically pleasing, to ensure that the colour and the shape of the frame are appropriate.
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Therefore in many retail optical outlets it will only be later in the process, after the person has already selected his frames, that an optician will become directly involved. This could lead to a situation where a customer who has already selected his glasses is then told that there is a problem with his capacity to have made that judgement.
The VCC believes the responsibility to determine an individual's capacity does not appropriately rest with an optician. We believe that opticians should not be required to make judgements for which they are not trained, nor should they be required to potentially overrule decisions made by health care practitioners. We believe it is the obligation of health care providers -- the optometrists, ophthalmologists or general practitioners -- to determine their patients' capacity and/or whether the patient is incapable with respect to the examination and the dispensing of the eyeglasses or contact lenses required by the prescription. Once a prescription has been rendered by an authorized prescriber, the judgement required as to an individual's capacity should have been made under the requirements of Bill 109.
The VCC believes, therefore, that individuals covered by the Ophthalmic Dispensers Act should not be held accountable under Bill 109. The instances in which an obviously incapacitated individual will seek to fill a prescription for an eye care product and not be accompanied by a person who can provide consent as set out in section 16 of the act will also likely be very rare. In those rare instances, common sense should dictate appropriate action, which may simply be a telephone discussion with the prescriber or a referral back to the prescriber.
The Vision Council of Canada is fully prepared to work with officials of the Ministry of Health to clearly articulate what form that appropriate action should take. We are, as well, prepared to take whatever steps are necessary to advise our employees of consent to treatment issues. We simply do not believe that it is wise, appropriate or necessary to require it under Bill 109, and we ask that you exempt the Ophthalmic Dispensers Act from this legislation.
Thank you very much.
Mrs Sullivan: I have indicated to you previously, Mr McArthur, that I concur with the point of view you have put forward. I think the situation of the Vision Council of Canada raises issues that indeed the Minister of Health did speak to before the committee in her initial presentation, indicating that the schedule to the act would have to be changed because the definition of the health practitioners to whom Bill 109 will apply is going to be maintained in a schedule.
Unfortunately this leads to an entirely other area, because as we have had no other guidance from the minister relating to where the new self-governing regulations under the new legislation will fall in, we see other deliverers of services that are associated with health care affected in the same way, by example, dental technologists -- denturists perhaps may be more of an appropriate example; medical laboratory technicians, X-ray technicians.
The issue here is, where is the responsibility for determining that consent is appropriate and available, who has paramountcy in gathering that consent, and does consent have to be obtained at every step along the way during the course of treatment? These matters are very unclear. Health professionals are extremely concerned about what could simply be a drafting error or in fact could be an intent, and nobody knows.
I think it is incumbent upon the parliamentary assistant in Health, who is carrying this bill, to put before the committee the minister's current thinking on which professions will be affected by this legislation, what is going to be included in the ultimate schedule under the regulations, and what kind of public consultation process there will be in determining whether indeed it is appropriate that a profession be included in that schedule.
We have heard a telling argument from the Vision Council of Canada relating to the scope of their practices. There are certainly other areas which must be included. Given that this act was first introduced in the House in May, that the Regulated Health Professions Act was dealt with in the House last Autumn, surely it is time the minister was somewhat more forthcoming in relationship to her own intent.
The other question that is raised by this presentation is the significant amount of important decisions in all these three acts which are being made by regulation and are not being made clearly and openly in a public forum by statute. This is a matter of concern that we have been raising from the very beginning, going back right to the definition of advocacy services, the mandate and scope of an advocate in Bill 74, to other matters that will only be dealt with by regulation. We do not feel that is an adequate method of dealing with something that affects the life of every single person in this province. Thank you for your presentation.
Mr McArthur: Thank you.
Mr Sterling: Could I ask the parliamentary assistant why he would want to include this group under Bill 109?
Mr Wessenger: I do not think it is fair to say there has yet been any decision made on who will be included under the schedule. I believe the original intention was to include practitioners under the Health Professions Act, but certainly we are listening to the presentation made by the presenters today and that will be taken into account when the decision is made on these issues.
Mr Sterling: Of course, if you accepted our amendment to subsection 1(1), which we introduced two or three weeks ago, it does not include a prescribed thing, a treatment. Therefore, I am sure, although maybe the pharmacists recognized the problem, they probably are faced with a larger problem than this group is. What are you going to do with regard to this group, may I ask on behalf of the pharmacists? What are you going to do with the pharmacists?
Mr Wessenger: Some of the things described in the brief would probably not be under the question of treatment. Certainly the filling of a prescription by an optician would not be treatment, in my opinion, even under the existing wording of the legislation. The fitting of the glasses might be considered treatment; I cannot see how the filling of the prescription would be a treatment.
Mr Sterling: I understand the pharmacists have asked to come in front of this committee later this month. If you can categorically say that filling a prescription is not going to be included under Bill 109, then I suggest we convey that to them and maybe it will save them a trip. Are you categorically telling us that?
Mr Wessenger: I am not in a position to advise the committee with respect to the matter of who will or will not be included under that.
Mr Sterling: It is a pretty major problem here.
Mr Wessenger: That is the reason we are having these hearings, to hear from groups who feel they should not be included under the provisions, and that is what the representatives have asked today.
Mr Sterling: That is a weird way to bring legislation in. You say, "Everybody in the world is covered under this legislation, but come in and complain you do not want to be under it." I mean, surely to God there is some onus on your part to say, "You are covered under this legislation." Make your decision.
Mr Wessenger: I think, with respect to this particular profession, there is an aspect of touching, or a physical aspect in fitting glasses. That is a consideration that has to be taken into account in making a decision.
Mr Sterling: But do you really want your advocates on their premises? I mean, basically, is not the ultimate concern of the government that a vulnerable person is going to be taken advantage of, is going to be maltreated, is not going to get the proper treatment? Let's be somewhat practical about what we are doing here. What on earth can happen on their premises that would in any way hurt any individual in Ontario? Tell me.
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Mr J. Wilson: It certainly did not come out during the RHPAs.
Mr Sterling: You have to be practical when you run a government, too, you know. You have to collect the bucks to pay these guys to go in and deal with it. Do you want these people waiting two or three months for their glasses?
Mr Wessenger: I think when we go to the clause-by-clause that --
Mr Sterling: We want decisions now.
Mr Wessenger: No. The process now is that we are hearing deputations. The decision-making process comes when we deal with the clause-by-clause.
Mr Sterling: Listen. You owe the respect to members of this committee not to waste their time with submissions that are not going to be relevant in the long run. Therefore, you have made this group come down this morning, and if in fact they are not going to be considered and it is not a real concern, then you do not have the right, in my view, to waste our time and waste the time of the various people in front of this committee when in fact there is no relevance with regard to the legislation.
Mr Malkowski: On a point of order, Mr Chairman: This is not a debate.
Mr Sterling: It sure is.
Mr Malkowski: We are here to hear from the presenters. Let's not get into our own squabbles. We are here to hear from the witnesses this morning, if we could focus our attention on that.
The Chair: That is not a point of order, Mr Malkowski.
Mrs Sullivan: On a point of order, Mr Chairman: The act, in the definitions in Bill 109, indicates that the consent to treatment provisions will apply to persons who are registered or licensed under a statute which is listed in this schedule. The current schedule to the act includes ophthalmic dispensers. That act is no longer in force after the RHPA. The new schedule of self-governing health professionals applies to many more professionals. The minister has indicated that the act and the schedule will change to include self-governing health professionals. In this case, the Opticianry Act would apply. The second section says the act applies to a person who is a member of a prescribed category.
The parliamentary assistant is telling us today that we do not know to whom this act applies and that there is no information forthcoming on which kinds of practitioners or which other categories of people are subject to the provisions of this act and have to follow the terms of this act. This is absolutely extraordinary.
The Chair: Thank you for that information, Mrs Sullivan.
Mrs Sullivan: I think it is incumbent upon the parliamentary assistant to inform the committee and the public who is subject to and who must follow the requirements of this act.
Mr Wessenger: The act as presently drafted is quite clear. It sets out in the schedule the acts that are covered. The new acts are not yet proclaimed and consequently the schedule as it exists is inappropriate at this stage.
Mr Sterling: A total disregard for people's time, money and efforts. This is ridiculous. I do not know how you argue that these people should be included. Why do you not exclude them? You are the parliamentary assistant. You get paid for being the parliamentary assistant. Make a decision. Do something. Call your minister.
Mrs Sullivan: Who else is going to be added?
The Chair: Mrs Akande.
Ms Akande: Thank you very much for the presentation. I recognize that opticians are not supposed to prescribe glasses -- or do they? -- and they respond to the prescription as written by an optometrist or an ophthalmologist. I do know, however, that there are adjustments frequently made in the prescriptions, perhaps illegally.
Mr McArthur: I am not aware of that.
Ms Akande: Then let's put it this way: If there are adjustments made in the prescriptions and those are made in the prescriptions of people who are vulnerable, it is found to be whose fault? Who would you think would be at fault in a case like that?
Mr McArthur: It strikes me that the question is trying to determine something that is hypothetical. An optician's role formally is to provide eyeglasses, and lenses specifically, that correct vision accurately according to the prescription written by an optometrist or an ophthalmologist.
Ms Akande: I am aware of that, but I am concerned about practice.
Mr McArthur: That errors could happen?
Ms Akande: That errors do happen and that when they do happen someone must assume responsibility if the person is vulnerable.
Mr McArthur: Yes.
Ms Akande: I am asking who you think that person should be.
Mr McArthur: I think if an optician does not have a pair of eyeglasses fitted that do accurately reflect the prescription, the optician is liable and responsible.
The Chair: Mr McArthur, on behalf of this committee I would like to thank you for taking the time out this morning and coming to give us your presentation.
Mr McArthur: Thank you all very much.
The Chair: In light of the cancellation we have had and the fact that the presenter is not here, we will recess until 11 o'clock.
The committee recessed at 1046.
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CITY OF TORONTO DEPARTMENT OF PUBLIC HEALTH
The Chair: I call this meeting back to order. We have a presenter from the city of Toronto department of public health. 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, please identify yourself for the record and then proceed.
Ms Bean: Thank you. I am Bonnie Bean. I am the supervisor in the department of public health, city of Toronto, and I am here to present our response to Bill 109.
I do not know whether you have received copies of the brief, but I intend to read part of it and rearrange the recommendations to follow my statements and make a few off-the-cuff remarks as well.
The city of Toronto department of public health supports the overall intent of this legislation to clarify the consent to treatment process, provide patient advocates and facilitate informed consent. Bill 109 can improve the delivery of health services by clarifying the role of providers and protecting the rights of vulnerable patients.
We want to address two significant concerns we have with Bill 109, an Act Respecting Consent to Treatment. On the last page we have a minor concern that I will address later.
The first significant concern is the selection of the age of 16 for capacity to consent, which we believe constitutes an unnecessary and arbitrary barrier to equitable access to such vital services as birth control, pregnancy testing and counselling, abortion, and testing and treatment for sexually transmitted diseases for young people. Any consequent restriction in access could have serious long-term effects.
The second concern we have is that the definition of treatment is too broad and could jeopardize education, counselling and screening programs, all vital to public health preventive and health promotion strategies.
As you may know, the city of Toronto department of public health is one of the largest health units within the province of Ontario. Our programs and services are based on principles of equitable access to basic health care, health promotion and disease prevention.
One of our major program areas is sexual and reproductive health. Program components include sexuality education in schools, clinical services specializing in family planning and sexually transmitted diseases, and diverse community-based health initiatives and services. Overall, our programs are guided by Ministry of Health mandatory health programs and services guidelines which specifically outline key objectives in these health areas.
Preventing the spread of STD, including HIV, reducing the number of unintended pregnancies and promoting services based upon informed decision-making in the areas of contraception, pregnancy, abortion, sexuality and reproduction are major program foci.
High rates of teenage pregnancy and STD among teens have made adolescents a key target population for this programming. Many youth are -- and if you are reading along with me, you will note the phrase "sexually active"; I prefer to be more specific and insert "having sexual intercourse" before the age of 16, the age that Bill 109 would automatically allow them capacity to make treatment decisions.
The 1988 Canada Youth and AIDS report found that one in five 14-year-olds and one in two 16-year-olds have had sexual intercourse. Reaching this population with effective education and medical services is an important public health objective.
Section 8 of this legislation presents the most serious concern from our point of view. This section establishes 16 as the age of capacity to consent regarding treatment decisions. It presumes that anyone under the age of 16 is incapable of giving consent. Health professionals can rebut this presumption.
We believe this will have a detrimental effect on the provision of health care to young people. First of all, the legislation is not clear about what the rebuttal process entails. In the absence of clear guidelines, many health professionals could be intimidated from providing services because of the uncertainty about their responsibilities and liabilities. Even if an explicit rebuttal procedure is established, many professionals, we fear, simply may not bother to go through it. In effect, whether intended or not, age 16 may simply function as an arbitrary cutoff.
The fear is that, regardless of the patient's understanding of the issues involved and regardless of his actual physical, emotional and overall development, many doctors will not want to take a chance. This concern has been expressed in professional medical journals and by leading physicians and public health experts.
A recent parallel case graphically demonstrates the fragility of access to services for sexual and reproductive health -- physicians' reactions to the proposed federal law on abortion. In anticipation of the legislation passing, many physicians had withdrawn their services throughout 1990 and many more said they would do so when the bill became law. This reluctance to provide services created inequitable and, in many places, non-existent access to abortion. We feel that we could be facing a similar circumstance here.
What will the impact be on young people if access to sexual and reproductive health care services and counselling is restricted? We think the consequences will be very serious indeed. The options for many young people could be stark: having to shop around to find someone who is willing to provide service, lying about one's age or, more likely, doing without medical service and care.
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In the areas of sexual and reproductive health, this can have serious consequences; these include high rates of teen pregnancy, infection from sexually transmitted diseases, abortion, pelvic inflammatory disease, infertility and low-birth-weight babies. Each of these involves critical physical, psychological, social, emotional and economic costs.
In 1989, approximately 14,000 15- to 19-year-olds became pregnant in Ontario. There were about 180 pregnancies for 10- to 14-year-olds.
According to a National Health and Welfare advisory group on STD, the highest age- and sex-specific instance of reported gonorrhoea occurred in females 15 to 19 years of age in 1989. Seventy three per cent of all chlamydia infections were found in the same group.
The incidence of chlamydia for 10- to 14-year-old girls in Ontario was 30 per 100,000 in 1989. This has been increasing since 1985.
Delay in receiving treatment for STD increases the chances of such negative long-term health consequences as pelvic inflammatory disease, infertility and low-birth-weight babies.
We recommend removing the reference to age and retaining the current common-law practice. This allows an individual to consent to medical treatment if he or she has understood and can appreciate the nature and consequences of the treatment. This allows young people to make independent medical and health care decisions to their full capacity in conjunction with their health care professional; the health provider makes a judgement in each individual case.
Our experience, through talking to young people in schools and family planning and STD clinics, is that the ability to receive confidential services and the ability to make independent decisions affecting their own health are critical factors in their willingness to come into the public health system. In my opinion, when young people are treated as mature and capable of making their own decisions they in fact become more mature and able to make wiser decisions.
Bill 109, as it is currently proposed, creates a further unnecessary barrier which may deter young people from seeking health services. The ministry has not offered any convincing arguments for why a reference to a specific age is necessary. Given the significant concerns expressed by front-line providers and public health experts and given the serious consequences for young people's health of any restriction of access to sexual and reproductive health services and counselling, the prudent course, in our opinion, is simply to delete the age requirement.
Removing this age requirement will not by itself ensure equitable access to health care for all young people. The provincial government has a proactive responsibility to ensure that health care professionals are aware of the existing common-law situation and the importance of facilitating informed consent, especially through counselling and education. Any problems identified with existing common-law practice regarding young people's informed consent can be addressed through professional and popular education.
The recommendations from my preceding remarks are these: Section 8 should be amended to delete any reference to a specific age as a determinant of capacity to make decision on treatment. The interests of both young people and society as a whole are best served by relying on existing common-law practice.
The second recommendation is that the provincial government should support and fund education to health care professionals and to the public about the application of common law to young people seeking confidential treatment.
Another concern that we have is that under the proposed legislation, 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." In our opinion, the definition could include general health teaching, counselling and public health screening programs.
The lack of clarity in Bill 109 about what constitutes treatment could seriously affect the delivery of school health programs which focus on general health teaching and counselling. Public health teaching on sexual and reproductive health begins at very early grade levels within the school system. Ministry of Health mandatory program guidelines endorse such programming. These programs provide information that promotes positive health behaviours and practices and empowers individuals to participate in health care decisions. The ultimate goal is to prevent long-term negative health consequences. Students have followed up with individual counselling and are often referred to other counselling and health services.
A recent Ontario study found that fewer Ontario teens were getting pregnant and that the abortion rate among adolescents may also be on the decline. The authors attributed this to the provincially funded pregnancy prevention programs. This was written prior to the article in the Star yesterday, which some of you may have seen, which said that teen pregnancies are down and gave credit to public health and education services for this. We wish that this would continue.
Prevention strategies of providing health education and counselling, which are critical to empowering individuals to participate in health care decisions, must not be jeopardized by making the definition of "treatment" so broad that they are included. So our recommendation 3 is that the definition of "treatment" be rewritten so that it specifically excludes the provision of health teaching, counselling and public health screening programs.
Finally, regarding the composition of the review board, the members of the Consent and Capacity Review Board are to be appointed by the Lieutenant Governor in Council; there are no criteria for the selection of board members except in cases dealing with capacity. We believe that members of the board must be broadly representative of the social, cultural and ethnic diversity of the province. More specifically, guidelines must be developed so that at least one member of a panel has expertise within the treatment area concerned.
We have two more recommendations: (4) that the board have representation from a wide range of social, cultural, ethnic and professional backgrounds, reflecting a diversity of perspectives on the issues to be reviewed; (5) that guidelines be developed for the selection of board members and the operation of the board so that at least one member of a panel has expertise in the treatment area under consideration. That completes my comments.
The Chair: Thank you. Each caucus will have about six minutes for questions and comments.
Mrs Sullivan: I think that this is an extremely useful brief. We have had some earlier discussion in committee, including when the Minister of Health attended the sessions of committee, in relationship to the questions surrounding age. I think the arguments you have put forward here really articulate the issues that have to be dealt with on age questions. The concept of "mature minor" is one that we feel has to be explored further in terms of the legislation. We are very supportive of all of the points that you have raised here.
The one area that I wanted to explore further with you, because it may mean that ultimately there will have to be changes in other legislation, relates to the age sections in the Child and Family Services Act. For children who are in care, children who are also victims of sexual attack, the consent requirements there are indeed quite different, and there is an age factor involved. I wonder if you could, as an adjunct to your brief today, speak to the Child and Family Services Act, and if you see concurrent changes required there.
Ms Bean: I am not really familiar with it, I am sorry. So I do not feel competent to respond to your question. I wish I could.
Mrs Sullivan: Okay, we will leave it at that. In that case, I would ask that the parliamentary assistant undertake to explore also the provisions relating to consent to treatment in the Child and Family Services Act as they would apply to this act as we move through this system. I think these are urgent and important questions.
Mr J. Wilson: We have tried to deal with two of the major points that you concentrate on in your presentation through amendments we have already introduced. Have you had an opportunity to review those amendments?
Ms Bean: I have not, I am sorry.
Mr J. Wilson: We will ensure that the clerk provides you with a copy. One is a definition of "treatment" which, I think, deals with your concerns. Also we have removed the reference to age in the capacity for consent section. Again, thank you for reiterating that. I hope, once you have had a chance to review these, that perhaps you will agree with the changes we have made and help us convince the government to do so.
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Ms Bean: There was a problem with our fax machine yesterday. I did hear them over the phone and wrote them down, and I seem to be in general agreement with them, but I would like to see them written.
Mr J. Wilson: We will ensure you get a copy.
The Chair: I would like to mention that you have them beside you now. The clerk has just delivered them. Further questions or comments? Seeing no further questions or comments, Ms Bean, on behalf of this committee I would like to thank you for taking the time out this morning and giving us your presentation this morning.
Mrs Sullivan: On a point of order, Mr Chairman: I wonder if Mr Wessenger would like to discuss the question of age a bit further, because the minister did speak to that in her first session, and I think it is important that it be put on the table in the context of what the government intends to do with amendments in this area, and additionally, when health practitioners can indeed expect to see, so that they can comment on, the minister's actual intentions here.
The Chair: That is not a point of order, but if Mr Wessenger would like to respond, he may.
Mr Wessenger: I will not speak for the minister, but I will be happy to make some comments as a member of the committee and as an individual member and just say that I think every presentation we have heard has been quite unanimous with respect to the matter of addressing the question of the age, and certainly the presentations have been persuasive in that matter.
Mr Sterling: If this committee would agree to go into clause-by-clause, we are quite willing to put forward all our amendments and deal with this right at this point.
The Chair: I believe that will be held over until after the consultations are finished.
Mr Sterling: Why not deal with it now? The government has said that it agrees. Let's get on with it so we do not have to have other groups come in and reiterate the same point.
Mr Winninger: We need a French translation.
Mr J. Wilson: Pas de problème.
The Chair: Order, please. Do we have unanimous consent to proceed to clause-by-clause? No, we do not.
SCHEDULING OF PRESENTERS
Mr Winninger: I feel it incumbent to revisit another issue, and that is the issue surrounding what was one witness who wished to attend here, who presently resides in Kingston, and now I understand there is a second witness, who is in Mimico, who may be in similar circumstances. Let me just recap my understanding to date and then perhaps we can decide where we want to go from here.
With regard to the witness in Kingston, who has been offered video conferencing and declined, who has been offered the opportunity to submit a written paper and declined, either directly or through his counsel, and who now finds that the medical facility in which he finds himself declines to have him attend even after we have agreed to pay the cost of security guards to accompany him here, I understand it may be helpful to the facility if the committee were to call and say, "Yes, we are interested in having him come, notwithstanding your objection." It may be that the facility is willing to secure the necessary people to accompany him down here.
I think that the case to be made is strengthened in that there is now a second individual who was on the standby list -- correct me if I am wrong -- to speak to this committee, who also wishes to come and that we should, as a committee I would move, ask either our Chair or our clerk to call these two facilities and indicate our strong interest in having these witnesses attend, because otherwise they do not seem to be given the same choices that other people who are not in these facilities enjoy.
We can look at the letter of the law or we can look at the spirit of the law, and here I am adverting to the spirit of the law, which is that this committee should be receptive, no matter what people have to say, to their opportunity to give evidence. If a health facility, due to its own internal considerations, is at this time declining to allow the individual to come, we should indicate a strong preference that those individuals be allowed to give evidence and not just say, "Well, we're giving you the same rights other witnesses have."
The Chair: So you move that the clerk calls the facility and indicates the committee's strong interest in having these individuals attend?
Mr Winninger: Yes.
The Chair: Okay. Ms Sullivan.
Mrs Sullivan: We did speak to this to a certain extent two days ago, and of course the subcommittee has met. It is very clear that the one institution in particular, although I am less certain about the circumstances at the second, is unwilling, without the force of a Speaker's warrant, to allow that person to testify before this committee. If the government members are indeed committed to allowing a voice to and the autonomy of vulnerable people, and this person has clearly been identified through the words of the parliamentary assistant in a sensitive way as being a vulnerable person, then surely the actions should not be simply to express an intent. Are the government members indeed willing to ask for a Speaker's warrant? The government members have the majority vote on this committee; let's not forget that. Are they willing to act and insist that this individual be here and able to testify in person?
There are not many days left for public hearings. It seems to me that another phone call, given that there have been other phone calls, may not be as satisfactory as the parliamentary assistant indicates he hopes the outcome will be.
The Chair: Just for the information of the committee, if we decide to go with the Speaker's warrant, we would have to wait until the House is called back and it would have to be debated in the House.
Also for the information of the committee, this has been discussed. The point is that these people have been invited to come and give their presentations. We have not intervened on anybody else's behalf to come in to give their presentations, and the option has been made available that they could give written submissions. They have chosen not to do that, just for your information.
Mr Winninger: I will respond after Mr Wilson.
Mr J. Wilson: I would just briefly say to Mr Winninger that it would seem to me that now that we have a second request, that does not strengthen the case. That would dilute the case, I would think. It is almost as if the floodgates are opening and people are wanting to appear before this committee. While they may have a right to do so, it does not seem they are very practical in that we have already extended a number of ways in which they can communicate with this committee. I feel the committee has been extremely reasonable in this case, and perhaps if the government brought forward its amendments, neither individual would have to appear.
Mr Winninger: Could I respond briefly?
The Chair: After Ms Akande.
Ms Akande: It is your discussion, David, so I will defer to you and then perhaps my comments will add to yours. Go ahead.
Mr Winninger: Thank you. I will just respond to Mr Wilson's point first. I do not think it dilutes the strength of the motion, in that our list of deputations and our standby list are now finite, as I understand it. Both of these individuals were either on call or on the speakers' list. We are not aware of any other such individuals who want to come before the committee and who face these peculiar obstacles to their attending. That is all I have to say in response to your point.
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In response to Ms Sullivan's point, it is not my understanding, from informal discussions with the clerk or the Chair, that these hospitals are saying the only way they will send these people is with a Speaker's warrant. I think my motion is a very reasonable one to make under these circumstances, so that we can say we did not leave any doors unopened or stones unturned in order to make every reasonable effort to have these people attend. If, as I understand it, these facilities may be awaiting a call from this committee indicating a strong preference that these witnesses be allowed to attend, given that we have agreed to pay their costs of coming here, I do not think that is an unreasonable motion to make.
Mr J. Wilson: On that point, as an attendee at the subcommittee meeting, I agreed with the invitation that had been extended to the one gentleman, for himself only, to attend. Subsequently, we have been told that the hospital would have to send a couple of employees with that individual. I personally would not be in favour of the expenses incurred there. Also, two people of the hospital staff must also take the day off to accompany this person for the day to attend here, take time out of work they could otherwise be doing, and I think the committee has been most reasonable in its offers to date.
The Chair: To clarify that, Mr Wilson, the committee has already extended that we would pay for the two experts to come.
Mr J. Wilson: But I did not agree to that. I did not agree with that, and I was surprised to hear that at subcommittee because that was not discussed. That was automatically done, which cannot be done. It was automatically done before it was even brought to subcommittee, and I certainly did not agree with that.
The Chair: I have another point of clarification on the second request to come. It would take direct intervention on behalf of this committee to ask for a day pass, so just asking them to allow this witness to appear --
Mr J. Wilson: Let's be frank. The floodgates are opening; word is getting out. All the pious speeches in the world are wonderful, but the fact is that I think you as a government have a lot of serious things to do in this legislation, and your preoccupation with bringing people out of institutions here is -- while it may be laudable, I think your priorities are a little backward.
Ms Akande: I think that the very issue that they can is an issue of advocacy, and it would seem inappropriate to me not to do everything possible to have those who are most concerned with the issue able to come to this committee and to present their remarks in a way in which they feel comfortable. In spite of the fact that alternative ways have been offered to people to present their remarks, it is not necessarily comfortable or comforting to those who have to use this system. Others have had the benefit of coming and presenting to us, and I think that in this particular instance it would really speak almost negatively to the very thing we have dedicated ourselves to, the very interests and the very goals of this, not to have those people be able to come.
I would support Mr Winninger's motion, and the only concern I have about it is that it may in fact not be strong enough and there may be greater measures necessary.
The Chair: First-time speakers. Mr Sterling.
Mr Sterling: This individual obviously is incarcerated in some way. I do not know whether it is under the Mental Health Act, whether he is --
The Chair: Under a Lieutenant Governor's warrant.
Mr J. Wilson: Both individuals?
The Chair: No, just the one, the first one.
Mr J. Wilson: What about the second one? Why does he need a day pass?
The Chair: We were informed that he needed a day pass.
Mr Sterling: He is under a Lieutenant Governor's warrant. I cannot judge what the person is there for; I am not given that information. I feel very reluctant to ask an institution to allow this individual to come out of that institution. I feel very reluctant to incur the cost, which would amount to $1,000 to $2,000, without knowing whether this person is sane or insane. If in fact he is insane, how does this committee justify the expenditure of $1,000 to $2,000 to call before this committee an insane person? How do you justify that when we do not have enough food for our food banks? How do you justify that? You have to extend an arm as far as you can, or an invitation as far as you can, but come on, let's get with it. Are we going to go to the ridiculous here?
Mrs Sullivan: I know that Mr Wilson had difficulty with the question of the institution's workers appearing with the individual in question. Assuming that the individual in question does come, our party would consider those workers as attendant care people and we would see it appropriate that the committee pay for their attendance here. However, once again, I think that the emphasis and the clear direction of the intent must come from the government members.
Mr J. Wilson: I think there would be a number of groups out there who feel we have just stretched the definition of what is meant by attendant care in 1992. I fall back on my earlier comments, and what Mr Sterling has also said, that without further information it is, in all seriousness, difficult to make a decision here. If we are not able to have full information, then once again we are spending time today debating this. Mr Chairman, I would ask you why is it that we cannot get full information on this?
The Chair: Nobody has asked for the information yet. What information would you like, exactly?
Mr J. Wilson: I think Mr Sterling raises a good point. What is the mental state of these individuals? Why are they where they are? I understand there are privacy provisions and considerations, but perhaps the individuals themselves would like to volunteer that information.
Mr Winninger: I would just raise as concerns the protection of privacy and the relevancy to what they have to say on these bills.
Mr Sterling: The relevancy is, do we have anybody who is talking with any kind of sense in front of the committee?
Mr Winninger: I think my experience has shown it is in the mind of the beholder.
Mr J. Wilson: I find it philosophical, because we are adding --
Mr Sterling: The state has said that he is not sane, if he is under the Lieutenant Governor's warrant.
Mr Winninger: He could have been incompetent to --
The Chair: Order, please. It is my understanding that the second presenter wants to come and talk on death in the prison system.
Mr Malkowski: We are asking for a very simple thing. We have said we respect the rights of all individuals to come and present here. I do not think it is worth arguing over a way to prevent this from happening. We should respect the democratic process, and that is giving this man this opportunity. I do not think we are asking for something outlandish.
Mr Sterling: Over the 15 years that I have been a member of this Legislature, we have denied thousands and thousands of witnesses the right to come in front of committees because we have not been willing to pay for witnesses to travel from Ottawa -- from my riding, the Ottawa area -- to Queen's Park in order to make their designation. We have asked them and said, "You have the right to make your presentation in writing, if you so choose."
In this case, we have not only offered the witness that opportunity but we have also offered another opportunity to connect him here by electronic input. I have no problem with asking, because we have some responsibility to be fiscally responsible as legislators, what we are going to get in terms of input for our money, That is why I asked before that we have some kind of preliminary review. Ask them to send in a written brief and if we think that in fact it has some great revelation to us, then we might consider that as a second step.
This individual has chosen not to respond in any way. I take great objection to spending something like $1,000 or $2,000 to bring this individual here when we have denied thousands and thousands of other witnesses the right to come in front of this committee, without any proof that this individual is going to shed any light on this legislation at all.
Mr Winninger: Mr Chairman, I am willing to have my motion deferred until later today so that we can have some discussion.
The Chair: Until later today? I think we should get this settled once and for all today. Just for your information, the original subcommittee that approved the funding was Mr Harnick, Mr Morrow and Mr Chiarelli. That was the subcommittee that approved the funding to bring the witness down, with escorts.
Interjection: It must have been prior to hearings.
Mr Sterling: We withdraw from that approval and I would ask that any motion to bring these forward have that as their motion -- that they pay for this individual and the guards or whatever is necessary to bring this person here.
Mr Malkowski: Possibly, we should then at this point recess and have the opportunity to discuss for 10 minutes and come back on it.
Mr Marchese: Mr Chairman, there's a motion to defer.
Mr Winninger: I am asking that my motion be deferred until this afternoon and then the Conservative caucus can discuss its position.
The Chair: Is there unanimous consent to defer?
Mr J. Wilson: No.
Interjections.
The Chair: All those in favour of a 10-minute recess to discuss this?
Mr Winninger: I am asking that it be deferred until this afternoon's sitting.
The Chair: You did not get unanimous consent on that.
Mr Winninger: Fine. I will withdraw my motion and return it this afternoon, if you like.
The Chair: Fine. Seeing no further business before this committee this morning, we will recess until 1:30 this afternoon.
The committee recessed at 1142.
AFTERNOON SITTING
The committee resumed at 1347.
CANADIAN ASSOCIATION FOR COMMUNITY LIVING
The Chair: I call this committee back to order. I would like to call on our first presenters, from the Canadian Association for Community Living. Good afternoon. 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 questions and comments from each of the caucuses. As soon as you are comfortable, please identify yourself for the record and then proceed.
Ms Richler: I am Diane Richler. I am the executive vice-president of the Canadian Association for Community Living. With me today is Dulcie McCallum, who is our consultant on government and legal affairs.
I would like to thank you for the opportunity of presenting to you today and to mention that it is quite unusual for us as a national organization to seek to make representation to a committee of a provincial government. One observation is that we are much more used to making presentations in Ottawa, and the turnout of committee members to whom we have presented there is far inferior to what we see here today, so we are very happy to see the level of interest on the part of this committee.
Mr Poirier: So you will come back.
Ms Richler: The reason we wanted to appear before you today is that the issues before your committee are of great concern to our association across the country, and the related issues of supported decision-making, approaches to consideration of substitute decision-making and advocacy are being discussed by our members from across Canada right now. We have a task force that is looking at the issues that includes representation of self-advocates, individuals who have been labelled mentally handicapped who are speaking on their own, parents of sons and daughters who have been labelled mentally handicapped, lawyers and other concerned citizens, so we are here today to share with you some of the concerns and experiences that have been raised by our membership from across the country.
I would like to mention as a preface to our remarks that we fully support the presentation made to you by the Ontario Association for Community Living, which is a member of our federation. I also want to draw to your attention, however, the brief that was made by the Canadian Coalition for the Prevention of Developmental Disabilities on February 20. As a member of that coalition, our name is included in the brief that was presented. While we are a member of the coalition, we had not seen the brief that was presented to you, had never endorsed it, and do not endorse it. So on the record, I would like to have that straight.
The Canadian Association for Community Living is a national advocacy organization which is a federation of 10 provincial and two territorial associations. Many of you may have known us before 1985 when we were known as the Canadian Association for the Mentally Retarded. It was when people who themselves had been labelled started to speak out and convinced us that we had to change our name that we did so. In speaking out, they helped us to realize that our task was not to try to improve the individuals who had been labelled, or even to support people, but rather to help communities to include people who had been labelled in all aspects of community life.
Our concern in being here today is that many traditional approaches to supporting people, such as guardianship, in fact replace a person's right to make his or her decisions in life. They lead to systems in which there is no reason to try to discover that person's own choices, thoughts or feelings. In accepting that someone else will be permanently responsible for making choices for the person, we discourage the creative drive which leads to attempts to unlock the expression and communication of labelled people.
I will draw your attention to an issue of a magazine we publish, called Entourage, that is in your package. One article by Justin Clark, whom many of you may have met, talks about the impact that people viewing an individual as vulnerable can have on that person's life.
We were extremely impressed by the approach in Ontario which sought to bring in a comprehensive package of legislation, particularly a mechanism for advocacy which would provide support for the thousands of Ontario citizens who are vulnerable because of where they live and because they have no one to support them. However, we are very concerned that the concept of advocacy and the creation of an advocacy mechanism would address only a piece of the puzzle and that the other important concerns that have to be addressed in terms of changing the kinds of supports and services available to people are not addressed. To our mind, it is like giving somebody a warranty without giving him the goods or product.
With regard some of the examples that I have heard of in Ontario in the last couple of weeks of people living in institutions who cannot get out, what they need is not a regular visit or the capability of someone to come in any time of the day or night to see how they are doing; what they need is to get out of that institution. Similarly, people who are living with parents who are aging and have concerns about what the future of their sons and daughters is going to be are being told, as recently as the last couple of weeks, that schedule 1 facilities are the only, and the least restrictive, alternative available to them. Our concern is that what those people need is not someone to say that where they are is bad but the supports that are going to help them participate in the community.
Dulcie McCallum has been working with our provincial and territorial associations across the country and I would like to turn to her to make some more comprehensive comments.
Ms McCallum: I bring a perspective that enjoys the privilege of having been involved in a number of jurisdictions looking at this same question, albeit the processes in every area are different. The Yukon is looking at guardianship, and I personally was involved in preparing the report for that government. British Columbia has undertaken a comprehensive community consultation that has been ongoing now for over two years. In Saskatchewan the public trustee has even hinted that she is prepared to look at the question of guardianship and the Dependants' Relief Act together. Manitoba is undergoing a review of that portion of its Mental Health Act that deals with mentally retarded people and makes provision for guardianship. New Brunswick has an older parents' project which is, for three years, looking at all aspects of issues concerning older parents, including guardianship. Newfoundland has just been invited by the Minister of Justice to undertake some community consultation on this question as well.
Through my involvement in all of those regions, I can say that my remarks today try to see this as an analysis of where we have come from yesterday, that we are at a crossroads to make some progress and what our eventual model might look like.
I think it is safe to say that our legal history, our legislative history and our government are designed on what I call three Ps, and those are property, privilege and power. Unfortunately, the guardianship model that is presently on the table here in Ontario to some extent continues to perpetuate those elements as appropriate foundations upon which to base a law regarding people labelled incompetent or incapable. It has historically been the case that it is a concern for the state to preserve property. It was the foundation of common law inevitably to treat some citizens as being less privileged, prisoners being an appropriate example, and to exert power over individuals who have been labelled or discredited.
Today we have an opportunity to make progress, and I suggest to you we actually have a commitment to make progress. It is based in part on the patriation of the charter and particularly the equality rights provision. This has imposed an obligation on you as a government, and we as a community, to ensure that there is equal access, equal benefit of the law, regardless of disability. I suggest that the notion of capacity and competence as it presently exists in these pieces of legislation does just that -- makes a distinction based on disability.
It is no longer acceptable for antiquated concepts to be used against people whose capacity is challenged. That includes all of us here; we will all age. With people, because of their level of literacy, disability or illness, competence in itself is not a helpful concept and indeed has been shown not to be very determinable: It has never been able to be assessed very clearly. In fact, it is riddled with élitist, racist, ageist, sexist and ablest overtones. We need to abandon competence if it means to have a rational state of mind and independent thought.
Included in your package are a number of principles we suggest should guide you in your deliberations. These speak of commonality and interdependence.
The effects of guardianship are overwhelming. It is not merely a question that a court order is obtained and justice is served. For the most part, any substitute decision-making order totally disfranchises the citizen. The legislation is not in the result single-purpose. The guardianship declaration is referentially incorporated into other laws with devastating results. It may mean the person can be sterilized, institutionalized, denied the right to marry or parent, lose economic opportunities, such as the right to contract, and denied the right to vote. Indeed, in subsection 2(4) of the Substitute Decisions Act, contracting is excluded for people who have a guardian.
The new Canada Elections Act just proposed by the Royal Commission on Electoral Reform will mean that anyone who falls under your guardianship act, the Substitute Decisions Act -- and I would suggest to you, partial or full -- will not be able to vote. That is because the section of the proposed act reads: "Every person has a right to vote in an election unless that person is subject to a regime established to protect the person or the person's property pursuant to the law of a province or territory because the person is incapable of understanding the nature and appreciating the consequences of the person's act."
In its report, the royal commission refers to "totally incapable." Unfortunately, in the draft act the word "totally" is removed: No decision, a bad decision, an imprudent decision, a horrible decision. Many people in our community, not the least of whom are men who violate women, people who violate children, rich people who gamble away their savings, these people may make bad decisions, but it is not likely that someone is going to intervene. It is often not the quality of the decision that gives rise to a guardianship order; it is the person and the category in which they fall.
In Ontario, the Ministry of Community and Social Services has recently issued a prevention policy framework in another area, related to children. But the language of those values is critical: "To enable individuals to assume responsibility for themselves and to foster self-determination, promote self-reliance and empowerment, support and strengthen family life while remaining sensitive to the needs of individuals, groups and communities at risk, respect the principle that prevention focus on the dynamic interdependence of individuals and their environments."
Also, in a public consultation that the ministry undertook in relation to seniors and support services, I quote again: "People who receive long-term care and support services do not want to sacrifice their individuality or dignity, and they want to participate in determining what services they require and how they are provided." People who are subjected to guardianship, be they people with mental handicaps, people who are mentally ill or seniors, all fall to the same fate.
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People are not vulnerable because they have a disability or because they are old; people are vulnerable because of what we as a society, as a legal system and as a community do to them. People are institutionalized, neglected, denied access to services and facilities, excluded into segregated and parallel systems and denied an active so-called voice in community affairs. It disengages people from their communities in two ways. The first is that it puts the individual in need of support at arm's length from government. The guardian is the person who assumes care and control, taking responsibility. So if the person, despite the fact that they have a guardian, is placed at risk, the government is off the hook.
The second way is that people are denied full participation in that those decisions which are not transferable to a guardian, such as the ability to make a will, the ability to initiate divorce proceedings, are totally lost to the person. So either they give them away or have them taken away and given to a guardian or they do not have the right to exercise them.
Governments must not relinquish their responsibility to the vulnerable citizens, as they are called here, be they seniors, new Canadians or mentally handicapped. Disguising the law with rhetoric that is a protection mechanism for so-called vulnerable people will not work. What can the three Ps for tomorrow be? I suggest to you that they are: participation, provision and protection. It is incumbent on us to design mechanisms that will enhance people's opportunity to participate with supports and services and to protect the so-called vulnerable citizens from abuse and risk. Everyone is entitled to participate to the best of their individual ability. In the wake of the charter and the interpretation given to the equality rights by the Supreme Court of Canada, any legislation regarding decision-making must enable, not disable, that participation.
The law must empower people and provide a means for improved inclusion. The historical disadvantage associated with being mentally handicapped has, in essence, been the lack of opportunity to be considered capable and contributing; this is the very disadvantage that the law must ameliorate. This remodelled decision-making process will recognize the role of people assisting people to decide, which is true for all of us. It will respect unique forms of communicating one's wishes, such as facilitative communication or Bliss symbolics. It requires that the safeguards are in place that will review decisions, not people, be they Nancy B. or Justin Clark.
Providing people with supports and services they want and require will reduce their vulnerability and improve the quality of their lives. Abuse and neglect are not to be tolerated. Guardianship does not protect people: Children with parents are abused; adults with guardians are abused. Mechanisms must be put in place that will eliminate the abuse and neglect of adults. In part, this is accomplished by having an infrastructure based on inclusion. Another part of the equation is having access to supports and services required. When those people supporting are given status and encouraged to be involved, integration improves and risk is reduced.
In addition, on an individual basis, an adult protection model can permit investigation and intervention. On a systemic basis, a means to investigate, to intervene and to advocate, as proposed under the advocacy system, for those who are at risk or who have no one is necessary to change systems and can be mandated by legislation. This form of systemic activism and improvement ought not to be confused with personal advocacy from supporting friends and family.
We have limited resources in this country and -- it probably does not need to be said -- in Ontario. We need to allocate and reallocate the limited resources very carefully. We need social and legislative changes that mirror the political will to make major improvements for those who are devalued and excluded. We must not create a new system that introduces progressive, non-intrusive changes that permit the non-labelled privileged to be self-determining while the others are excluded.
A place to begin in reviewing the existing model would be to hold it up to the standards of an appropriate statement, of principles and I would suggest that as the legislation presently stands, it will not stand the test. A place to finish is when we have a ramp in place, whether it is a signer for a person who is deaf or a ramp for a person who has mobility impairment. We have ramps so they are included as full and participating members and citizens in our community. What we need for people with mental disabilities and seniors is a ramp, and the legislation should form the foundation for that ramp so they are fully included with us. We would be happy to answer questions.
The Chair: Thank you very much. We have about three minutes for each caucus. Mr Wilson.
Mr J. Wilson: Thank you very much. It is a very interesting brief. I am sorry, I have not had time to read it all. I kind of missed the most important points, which were your latter points dealing with the alternative model. Can you succinctly give me that again; you know, in lieu of guardianship?
Ms McCallum: In two words or less, the model would turn itself around. We recognize that some of us have informal support. You probably make decisions with your friends and family quite a lot. It is rare for us to make independent decisions. When persons are labelled, any effort they make to get support to make decisions is viewed or considered aberrant, in the same way as they may do something and I do the same something: with me it is a joke and with them it is deviant.
Mr J. Wilson: And unlike me, they have to declare who they consulted with on that.
Ms McCallum: Correct. You see, so long as there is a model in place that creates a distinction and takes away something from someone, those people will always be potentially subjected. For instance, a person who has gone to high school, has graduated and has a full-time job, happens to have Down's syndrome. Because the act speaks of people who are potentially candidates as incompetent or incapable, the provision in your new act that deals with the ability to enter into a contract places the onus on the person entering into the contract or receiving the gift to determine that that person was not incompetent or was not under a guardianship order.
People who have traditionally been devalued -- very old people, people with mental handicaps -- there will be a hesitation and a segregation and an exclusion of them. They will be disengaged economically because of the fear of that kind of provision. So whatever model you would have, it may be on a continuum of the amount of support, but you and I would fall under it. We would be able to make pre-declarations, but as the model moves forward it would all be based on support, empowering people, giving them status, rather than deciding that at some point along the continuum we have to exclude a particular category of people.
Mr J. Wilson: Can I have one more quick question, Mr Chairman? Just in the area of guardianship, you have had extensive experience in this, I imagine, and I have not. Is it fairly easy to obtain a guardianship in this day and age where it exists?
Ms McCallum: I would say the answer to that is probably yes, certainly in --
Mr J. Wilson: That is the impression I got from your brief, certainly.
Ms McCallum: Yes. In British Columbia, I can say, when I was practising law, you could easily get a guardianship order based on two affidavits of two physicians. The person was usually served, but not necessarily -- it could be waived -- did not appear and there was rarely a trial.
Mr J. Wilson: So it was sort of an ex parte --
Ms McCallum: In fact, we had one client whose father got a guardianship order here in Ontario, and the young man was living in Vancouver, without notice and without presence.
To be fair, I think the old model was based on a medical model. It relied on doctors to have some expertise. I think that whole notion has been discredited. We recognize that is not what ability means any more and I think many of the medical community would join in that idea. So the fact that it was kind of a paper court order was certainly one of the reasons why BC initiated its consultation, because the provisions under the Patients' Property Act were so inadequate.
I would just add that I would not want to create a guardianship act that was incredibly fair, where we would have a huge, costly hearing and we would have lots of assessments, the person would be given notice and would come, and we would inject all these fairness techniques from section 7 of the charter, but at the end of the day we would be doing exactly the same thing to people: We would still be creating categories of people and taking things away. In a free and democratic society, where is the justifiable limit? If someone is incarcerated, is it okay that he cannot vote or is it okay that he cannot enter into a contract? Is that really appropriate for someone who is supposedly a full and contributing citizen? Are there other ways to allow them to engage in decision-making?
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Ms Carter: I will yield to Mr Winninger, and I will come in if there is time left.
Mr Winninger: Are there people living in your group homes who do not have friends or family outside the group homes?
Ms Richler: When you say "your group homes," the Canadian Association for Community Living does not operate any services. Are you thinking of group homes that might be operated by local associations for community living?
Mr Winninger: Yes.
Ms Richler: I would certainly expect that there are people living in group homes run by any agency that would be without family or friends.
Mr Winninger: Who would make decisions if people appear to be mentally incompetent to make those decisions on their own behalf in those situations? Do you know?
Ms McCallum: At present, I would say that oft-times service providers are placed in the untenable position of sometimes having to provide consent. But you make the very point, you see: those people who may be mentally incompetent. If we remove that concept from our minds and we recognize that some people need more support -- in fact, in introducing this in the House, the minister said that the agenda is to create in Ontario a supportive environment where all people, including the most vulnerable among us, can meet their full potential with hope and dignity. That is absolutely right. Unfortunately, the acts do not do that, so in the guardianship situation where someone has no one, you build advocacy around him.
Mr Winninger: Sure. But just to come back to my original question, you say service providers sometimes provide consent. Where is the accountability there?
Ms McCallum: Absolutely. It should not be the case.
Mr Winninger: What should not be the case?
Ms McCallum: That people who are service providers should provide third-party consent.
Mr Winninger: Who else will there be if there are no friends and there is no family? Is it not better that the person who makes those so-called consensual decisions be someone who has the legal mantle of guardianship to make those decisions and is going to be accountable ultimately to the courts for how he or she discharges those obligations and responsibilities?
Ms Richler: If we go back to the situation of Justin Clark, he was a young man living in an institution who disagreed with his family, who ordinarily would have been the people to whom service providers would turn, and yet he was able to communicate well enough to the people working around him within the institution what his wishes were.
Mr Winninger: I have no argument, and that is why guardianship would have been contraindicated there, but I am talking about people who may not be capable of making those decisions. Do you agree with partial guardianship?
Ms Richler: No.
Mr Winninger: Why is that?
Ms Richler: We do not understand the concept of not being able to make decisions.
Mr Winninger: At all?
Ms Richler: That is right.
Mr Winninger: So what about these situations where service providers are making decisions? Why would they even need to if everyone, given supports, can make his own decisions?
Ms McCallum: Because no one will take their consent. I know physicians in Vancouver who will not deny any patient the opportunity to have the time spent with him to get informed consent. Informed consent is an individual-based concept.
Mr Winninger: What if someone is in a coma? How do you deal with that?
Ms McCallum: It is a totally different situation. They may have made a pre-declaration by a health proxy or a power of attorney.
Mr Winninger: And if they have not?
Ms McCallum: If it is an emergency, nothing is necessary. One of the advantages of the model you have at present is that you have divided it up into pieces and you are addressing medical consent, which is a very critical point. There are issues for physicians, health professionals and for people needing access to medical services, no doubt about that, but that can be dealt with in the medical consent. If some provision needs to be made where no one has made a determination in advance and he is unconscious and it is not an emergency, then you may have some kind of mechanism of a list of who could step in as that person: his partner as defined by your act or his spouse, mother or father.
Mr Winninger: Are you not getting closer and closer to the concept of guardianship there?
Ms McCallum: Absolutely not.
Mr Winninger: Sorry; we have run out of time.
The Chair: Ms Richler and Ms McCallum, on behalf of this committee I would like to thank you for taking the time out this afternoon and coming and giving us your presentation.
ST JOSEPH'S HEALTH CENTRE, TORONTO
The Chair: I would like to call forward our next presenters, from the St Joseph's Health Centre, Toronto, ethics committee. Good afternoon. Just a reminder that you will be allowed a half-hour for your presentation. The committee would appreciate it if you could 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.
Sister Iredale: The people who will present this afternoon from St Joseph's Health Centre are, in order of presentation, Sister Marcella Iredale, the speaker, Dr Doug Crowell, Ms Bridget Campion and Ms Catherine Cary.
Thank you for this opportunity to speak to this committee on the proposed new legislation. You have received written material, which we will speak to. Dr Crowell, Ms Campion and I will speak to themes which appear to run through the legislation. Ms Cary will propose a scenario which could become a reality should the legislation be passed in its present form.
St Joseph's Health Centre supports the principle which we understand the proposed legislation seeks to address and recognizes the importance of clarifying procedures for substitute decision-making. We are, however, concerned that although it is not the intent, the proposed legislation appears to ignore a basic principle which we believe to be essential to all human interaction. That is respect for the dignity of the individual, of the human person.
In Bill 74 the person's right to privacy seems to be ignored. In the same bill confidentiality appears to be at risk, and in Bill 109, the autonomy, the right to self-determination, appears to be disregarded. We believe that the right to privacy, confidentiality and autonomy are inherent components of respect for the dignity of the individual. The proposed legislation appears to infringe upon this right in relation to vulnerable persons, whom the legislation proposes to protect, but also to others involved and affected in relationship with individuals.
Bill 74 infers that health care providers would not act in the best interests of patients, would in fact perhaps harm them. This inference is unjust, does a disservice to this group and thus ignores their right to the respect due the human person. Bill 109 would appear to treat the relatives of vulnerable persons equally disrespectfully by excluding them from participation as substitute decision-makers. Bill 110, in its amendment to the Education Act, treats parents and guardians in the same manner. Although it is not the intent of this legislation to disregard this very basic value of respect for the dignity of the individual, in its present form it would appear to do so.
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Dr Crowell: Thank you, Mr Chairman, for the opportunity to speak. I am Doug Crowell, the chief of anaesthesia and chairman of the hospital ethics committee. I have been a certified specialist in anaesthesia since 1962. Many of you will have already experienced the very personal feelings and worries that are associated with this trip into risks and life-and-death apprehensions. I would ask you now whether you think that perhaps your anaesthetist acted as an advocate for you -- that is, acted in your best interests.
I am very puzzled by what appears to me to be a new perception: that I and other members of the healing professions no longer function in that role of an advocate.
Our institution at present has about 385 active treatment beds. Of that population, we can conservatively predict that at any time some 10% of patients would be classified as being incompetent. Also it is not unlikely that some 15 to 20 physicians could be involved in their care; that is, they are responsible for the outcome of their hospitalization.
I would ask you to ponder how the staff of the public guardian and trustee office will cope with the proposed advocate interviews relating to the patient's rights, arrange and hold the subsequent hearings dealing with competency, appoint an assessor, generate feedback to the care givers, review the history and course in hospital so as to understand the patient's condition, meet with the physician responsible, and then objectively be in a position to recommend a course of action, all of which may set aside the patient's wishes, even if they have been indicated by a previous directive, negate prior involvement of the family and do away with any vestige of patient confidentiality.
You will no doubt respond that most of this can be avoided by the prior appointment of a party who will have power of attorney for personal care. We are concerned that even this can be refused by the public guardian or in some circumstances rendered null and void under this proposed legislation, and we assume that in order for this to occur there will have to be some sort of feedback to the public guardian. I would ask you: How much feedback, how often and by whom? Many clinical situations require hourly changes in protocol, some of which can impact upon patients' survival or indicate that further therapy is going to be of no benefit to the patient.
I would therefore ask you: Will all these changes in the direction of care require consultation with the advocate or his or her superior? Will every advocate or assessor decision be made in the patient's best interests? What will be their interpretation of what "best interests" implies?
Will this mean that life will be prolonged at all costs, or will we be effectively prolonging the suffering and the dying process against overwhelming odds, especially at this time now when availability of acute care beds is being eroded and there is little support for the concept of medical necessity in the eyes of both the law and the government?
Who is going to accept the legal responsibility that can arise out of unfortunate incidents or decisions? Will hospitals and physicians be relieved of this burden as long as they are being guided by the advocates and assessors? An ethical physician will not abandon a patient, but what actions will be open for the physician if there is not an agreement on the proposed treatment? Will there be an appeal process and, if so, how quickly do you think this will likely be resolved? For example, in November 1991 we had an incompetent patient admitted to the emergency unit for care. Two and a half months later, permission came from the public guardian and trustee office allowing this patient to have his surgery.
In addition, there are a number of issues which are legal in the eyes of the law but yet are repugnant to segments of society on personal, religious, moral or ethical grounds. The intrusion of advocates and assessors into the decision-making, not knowing where they come from, what religious doctrine or philosophy of values they espouse, appears to me to be a very unwelcome and invasive stranger at the bedside.
I am curious as to what has gone wrong with our society. What has happened that the elected representatives of the people are proposing these sweeping changes? Is there a perception that society fears it will not receive enough proper care or receive maybe too much care, as in Quinlan and Nancy B.?
As a taxpayer I have some concern that the present government policy with respect to health care funding appears to be eroding one's access to that care. This is not on the agenda today. However, the second issue certainly is. We feel that the proposed legislation does little to solve the medical-legal interface in coming to grips with the issues surrounding continuing burdensome treatment or therapy and substitute decision-making when there is little, if any, chance of ever improving the quality of life.
Ms Campion: My name is Bridget Campion. I work as a clinical ethicist, and as you can see, I am not going to speak to any practical points because of that. Instead, what I would like to do is make one or two comments about advocacy, because it seems to me that advocacy is a major concept anchoring much of this legislation.
In the proposed legislation, the government is responding to a need, the need that somehow vulnerable persons are at risk in our society and, more specifically, at risk in health care. I do not have access to the government's studies, so I cannot say exactly how or to what extent vulnerable persons are at risk, but I certainly know that the perception of risk exists. For instance, in long-term care, which is an area of particular interest to me, people sometimes describe the relationship that exists between health care worker and health care receiver as custodial, and this indicates an imbalance of power. People sometimes talk about warehousing patients and residents, which indicates an objectification of them. We do know that our geriatric population in Canada spends a disproportionate amount of time in physical restraints.
In long-term care, many patients have difficulties expressing their wants and needs. Perhaps it would be more accurate to say that they do indeed express their wants and needs, but we have a difficult time understanding exactly what it is they are saying to us. Many patients in this population are deemed not competent, so it would seem that if an advocate were to be a real asset, it would be in a setting something like this. But is this the case?
My fear is that while vulnerable persons may be at risk, we will not through advocacy be diminishing that risk, because we will not be attending to the root of the problem. I believe the root of the problem is to be found in the relationship that exists between health care giver and health care receiver. This is a relationship which is often viewed as polarized, at the very least. Some people would even call it adversarial. To round out the picture, let me suggest to you that health care workers in long-term care are themselves at risk of verbal and physical abuse from patients and residents, and often suffer from low self-esteem.
My fear is that advocacy as it is being proposed -- and by that I mean it is an automatic mechanism in certain instances -- will deepen any mistrust that exists between health care giver and health care receiver. It will certainly make explicit any potentially adversarial nature of the relationship, because it simply shores up one side of that relationship. To me, the problem is that the presumption behind advocacy is that the relationship is one of power.
To me, the solution lies in building relationships of trust between health care receiver and health care worker, and this means attending to systemic problems. It means, for instance, changing our perceptions of vulnerable persons and working towards a model of mutuality; that is, realizing that health care workers and health care receivers engage each other in healing. It means making clear to staff in long-term care that what they are doing is worth while. It means realizing that healing and care in long-term care depend not so much on treatment as on establishing and sustaining relationships and human contact; that is, having the patient or resident seek and know that someone is truly listening. Sometimes it means merely keeping watch with a patient.
To me, this is intensive care in a very different sense, and yet we do not see it that way. But we are trying to. I would like to say that the long-term care and geriatrics mission statement, at St Joseph's Health Centre anyway, is based on concepts like these. It is by building relationships of trust that we will be able to lessen the risk at which health care receivers and workers are placed.
I believe the government is correct in identifying the need, but I am afraid that unless we attend to the systemic problems in advocacy, we will have proposed a solution that does not solve the problem.
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Ms Cary: My name is Catherine Cary. I am the unit administrator of the ICU-CCU, the intensive care unit and the cardiac care unit, at St Joseph's Health Centre, and I am the practical one.
It is 2 o'clock in the morning in the ICU on May 14, 1993. The telephone rings at the nurses' station. It is emerg: "Hi. It's Sue from emerg. We've got a patient, Mr Stanley Kowalski, down here for you. He is a 68-year-old Polish gentleman, a patient of Dr X. It looks like he's pre-respiratory arrest. pO2 in his boots and pCO2 is 73. He's acidotic with a pH of 7.22. Very short of breath and diaphoretic. He'll probably need intubation soon. His wife's with him. She speaks English, he doesn't. When can you take him?"
"Send him up."
This is an aside. How do these acts impact on what goes on in emergency? How does the patient get up to ICU? I am not sure.
The patient is admitted to the ICU. We recognize that he was a patient in our unit last year. His wife is in attendance. She is anxious and concerned. The health care team members conduct a patient assessment: central nervous system, cardiovascular system, respiratory, renal, metabolic. The diagnosis from emerg is confirmed. The assessment reveals also that Mr Kowalski is responding appropriately, but is becoming obtunded, ie, he is becoming incapacitated. The health care team discusses and debates the options. Someone says, "I wish we had an algorithm to sort this out."
Option A:
The health care team: "One option is the SDA, the Substitute Decisions Act. We are generally supposed to use that with people who have chronic illness, but he was here last year with the same thing, and it may become a chronic problem. All right, let's go with that.
"Mrs Kowalski, in order to ensure that your husband's rights and wellbeing are protected, we are going to call in a government-appointed advocate. This person will come and explain what is going on to your husband. He will not leave until he is satisfied that he has done the best he can in providing this explanation. We will request that he be able to speak Polish."
Mrs Kowalski: "Why? I always interpret for my husband. Last year, was I wrong? Did I do something wrong? What will the advocate tell my husband that I can't? How will he know what to tell him? My husband is sick. Can he come now, at 2 o'clock in the morning? How long will he take to get here? All right," reluctantly, "call him, but please, my husband is so sick."
Option B:
The health care team: "Maybe the better option is the Act respecting Consent to Treatment. This could quite conceivably be considered an acute illness and incapacitance, temporary in nature. Let's go with that. The patient is now obtunded, so we'll have to speak to his wife.
"Mrs Kowalski, has your husband appointed you to be his power of attorney for personal care? If so, do you have any documents to prove this?"
Mrs Kowalski: "I don't understand you." An explanation is given. "Well, no, but I am his wife. I help him. He is my husband, I love him. I listen to you, doctor, and then I tell my husband, like last year. He is sick, doctor."
Doctor: "No, I'm sorry, Mrs Kowalski, we can't do that now. There is new legislation to protect the rights of your husband. There is a formal procedure to follow. We must consult with these people in this order: advocate, guardian, representative from the boards, spouse and so on."
Mrs Kowalski: "But I am number four on the list. Why? Why am I on the list if I am number four?" She is very upset. "My husband is very sick."
Option C:
The health care team: "Surely this situation represents emergent care. We can certainly show that without intervention in the next 12 hours Mr Kowalski's condition will deteriorate significantly.
"That's all right, Mrs Kowalski. We're going to look after your husband. This is what we propose to do. Do you think this is what your husband would want us to do?"
Mrs Kowalski: "Oh, thank you. I trust you, doctor. Help my husband. Thank you."
Care is provided. The nurse reminds the physician that documentation of care provided must be sent to the office of the public guardian and trustee. Arrangements are made to copy the chart and send it.
The telephone rings at the nurses' station. It is emerg.
The Chair: Thank you. Questions and comments? Each caucus has about three minutes.
Mrs Sullivan: I was particularly taken in your presentation by Ms Campion's statement on page 7, "The presumption behind advocacy is that the relationship is one of power." I recall another presentation from an advocacy organization that suggested that one of the problems with the Advocacy Act as presented was that the act provided to empower the advocate in fact more than it allowed empowerment of the patient. I thought that was quite an interesting response, and while that organization believed a new and different and more expensive approach to advocacy was important, they were also very concerned about the question of the power balance, patient versus advocate. Would you like to expand on that thought just a bit more for the committee?
Ms Campion: I guess in my mind's eye, the scenario I was imagining was just the sort of spiralling of advocates. As I have mentioned, nursing staff, for instance, are at risk in long-term care from patients and residents. So I thought to myself, "Perhaps then they too would have to have advocates." I could not in my own mind imagine that, say, health care administrators would ever end up with advocates on their behalf, but I just saw that it was like an arms race, basically, and I was just afraid we were keeping the problem intact. It is an amazing idea to me that in health care the basic relationship is one of power, and I think we have to try to build it another way if we are going to solve the problem.
Mrs Sullivan: The other observation I want to make, because I know we only have three minutes per caucus, is that in Ms Cary's presentation, under option 1 of her scenario preliminaries, indeed the diagnosis could not have been done in the first place under this act.
Ms Cary: That is what we were wondering about.
Mr Sterling: I would like to ask the parliamentary assistant for the Ministry of Citizenship about the concerns of Dr Crowell with regard to the advocate. How is the advocate going to understand the religious beliefs, the beliefs of the family of the individual; how is he going to represent those interests in advising the incompetent patient?
Ms Carter: Mr Sterling, I do not think the advocate advises the patient, in a sense. They are --
Mr Sterling: I did not ask you; I asked the parliamentary assistant. Excuse me.
Ms Carter: Oh, I am sorry.
Mr Malkowski: I would refer this to Trudy Spinks.
Ms Spinks: I think that in the scenarios described by the presenters, the role of the advocate is a fairly straightforward one, as is described under the Consent to Treatment Act, to provide the information that the individual has been found to be incapable and has a right to appeal that decision. I do not think it involves the advocate in making judgement calls in presenting his or her views of the individual's best interests; it is an informational function.
Mr Sterling: Let's take the example, then, of a Jehovah's Witness who does not believe in taking a blood transfusion. The patient is a Jehovah's Witness. Does the advocate take that into consideration in his advice with regard to taking a transfusion?
Ms Spinks: The advocate would not be advising the individual whether or not to take a transfusion. The advocate is telling the individual that he has been found incapable, that someone else is proposed to make the decision on his behalf and that he has the right to challenge that finding.
Mr Sterling: If that is all the advocate is doing, I do not know why you have advocates. If that is the role of the advocate, why do you not just require every health practitioner to warn the person he should have that? Did you want to say something?
Mr J. Wilson: I think the point on that too then is, why in the act is the advocate having access to the clinical record? It would be of no use to the advocate.
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Ms Spinks: If I could just comment, I am addressing the scenarios that were presented by the presenters. I think they are talking about the role of the advocate with respect to medical treatment decisions under the Consent to Treatment Act.
Mr J. Wilson: I think you were responding to our questions. Why does the advocate, if that is role of the advocate, need all these other sweeping powers, including the access to the medical record?
Ms Spinks: The advocate has other roles under the Advocacy Act, but the issues raised by the presenters concern the advocate's role, I believe, under the Consent to Treatment Act. If an advocate is in another capacity serving an individual who has preferences with respect to their religious beliefs and so forth, then obviously the advocate's job would be to represent those on behalf of the person to other individuals.
Ms Carter: I am addressing the role of the advocate under the Advocacy Act, which is to help the people who are vulnerable but not incompetent; in other words, they are capable of expressing their own opinions. The function of that advocate is simply to help the patient express his own wishes, so the values of the advocate would not be relevant because, as I say, they are just monitoring the patient's own wishes. The advocate would leave immediately if the person did not want him to be present, and he will preserve confidentiality, except in some very specific situations. I think, if you look through section 30 of the act, you will find that is quite tightly described.
At the top of page 8 you say, "Much of healing depends on being heard." Since that is all the advocate is doing -- listening to the person's own opinions and trying to pass those on so that they may be acted upon -- would you not think the presence of the advocate would speed healing?
Ms Campion: The thing is, we often think of communication as simply an exchange of information. If that is the case, then the advocate is fine, but I think communication is about relationship. That is when I start to worry about the advocate, because the advocate comes in as an outsider, apparently to be objective, I suppose, and does not necessarily build relationship with the patient or resident, the health care team or with the family. So we are dealing with a very narrow view of communicating. I think healing is dependent on the larger view which involves the relationship aspect of it.
Ms Carter: But I think the point here is that we are not dealing with that majority of people who have no problems as far as their family and medical attendance go. We are dealing with those people who fall between the cracks.
Mr Sterling: We are dealing with everybody.
Interjections.
The Chair: Order, please.
Ms Carter: I am talking about the Advocacy Act as such.
Mr Sterling: We are talking about the Advocacy Act. It affects everybody, every treatment that they can get -- that is the problem with it.
Mrs Sullivan: They have more powers than the police do.
Ms Carter: No, the only power they have is to go into a place where they think there may be a vulnerable person who would wish to speak with an advocate and to be allowed --
Mrs Sullivan: Access to records?
Ms Carter: -- to speak privately with that person. They would leave immediately if that person did not wish them to be there. They have none of the powers the police have to bring consequences.
Mr Sterling: They have more powers.
Mrs Sullivan: They have more powers than the police. They have full access to clinical records.
The Chair: Ms Campion, a quick response.
Ms Campion: I do not know how we look at hospitals. I tend to look at them as moral communities. My fear is that when we work with the idea of advocates, we will be diverting tremendously needed resources from the building of moral communities in hospitals to shoring up the adversarial nature of the relationship. So we are making a choice and we are going, to my mind -- I am an ethicist; I get to say it -- with a wrong stream.
The Chair: Sister Marcella, Dr Crowell, Ms Campion and Ms Cary, on behalf of this committee, I would like to thank you for taking the time out to come and give us your presentation this afternoon.
CANADIAN ABORTION RIGHTS ACTION LEAGUE
The Chair: I call forward our next presenters, from the Canadian Abortion Rights Action League. Good afternoon. I just remind you 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 of the caucuses. As soon as you are comfortable, can you please identify yourselves for the record and then proceed.
Ms Toogood: My name is Joan Toogood. I am a board member of the Canadian Abortion Rights Action League. With me is Jane Holmes, CARAL's executive coordinator. We are pleased to be able to appear before this committee.
The Canadian Abortion Rights Action League is an incorporated, non-profit organization which has been working for the past 18 years to ensure that criminal laws on abortion are abolished and that no woman in Canada is denied access to a medically insured abortion. We have about 18,000 individual members in Canada and roughly 60% of those reside in Ontario.
The government's package of health legislation is generally humane and is certainly comprehensive. CARAL would like to thank the government for its good intentions in introducing this package of legislation which is designed to benefit a great many people. The one group which some portions of this legislative package hurts, however, is pregnant women, especially young women.
The age of capacity to consent to treatment, age 16, which is found in sections 8 and 10 of Bill 109, would likely prevent access to health services, particularly abortion services.
Bill 8 creates an exception for pregnant women who have made living wills.
We will now review the portions of the legislation with which we have concerns.
Consent to Treatment, Bill 109: Section 8 includes a presumption of capacity above age 16 and a presumption of incapacity below that age.
We understand this section is an attempt to codify the common law. We respectfully submit, however, that at common law there is no presumption of incompetence below the age of 16. What is needed for a child to be considered mature enough to be capable of giving informed consent is the requisite mental ability to understand the nature and consequence of the proposed treatment. We agree with the proposed amendment put forward by the Progressive Conservative Party that eliminates age references in section 8.
If a presumption of incapacity based on age is created by legislation, we believe the government will be legislating a serious erosion of children's rights at common law. If, however, the government insists on creating such a presumption, then this presumption must be set at a significantly lower age, which more reasonably reflects the concerns and responsibilities of young people in today's world.
In fact, data indicate that many young people are sexually active by age 12. There is significant sexual activity among 12- to 14-year-olds, which is known by the incidence of accidental pregnancies and sexually transmitted diseases in this age group. Recent research shows that one quarter of Alberta's adolescents have had sexual intercourse by age 14. The figure for the United States for teens in grade 9 is 40%. In 1989 there were five live births recorded for children age 12. For the age group 12 to 14, there were 214 live births and 354 abortions.
We recognize that the presumption currently set at age 16 is rebuttable, but we agree with the consensus among professionals in the field of reproductive health that many doctors will not actually rebut the presumption.
We have all witnessed the great fear of liability the medical profession displayed during the debate on the federal government's Criminal Code abortion legislation.
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If the proposed amendment to section 8 is adopted, section 9 and clause 45(d) become unnecessary. It is of concern to us that the regulations have not been drafted and may make it difficult for pregnant women to be deemed capable in a timely way. As professionals, doctors are the ones who should make determinations of capacity, without direction from legislators. It is part of being a professional to have the ability to establish such standards.
We move now to section 10, which deals with advocates for persons who have been found incapable. Subsection (7) states that the provisions of section 10 apply to persons under the age of 16 who have demonstrated a wish to give or refuse consent on their own behalf. This section appears to apply to anyone under the age of 16, whether or not there has been any finding of incapacity and whether or not there has been any opportunity to rebut such a finding.
This is a problem because it appears to force all persons under the age of 16 to submit to a review process. We would like the age references in this section removed so that section 10 refers only to those specifically and individually found by physicians to be incapable of consenting on their own behalf, whether they are 16 or not.
The Advocacy Act, Bill 74: In this act, provision has been made for commissioners to represent the interests of various constituencies of vulnerable persons. Among other things, the commissioners shall ensure that such persons can obtain necessary advocacy services and shall appoint advocates. Commissioners and advocates are to have appropriate expertise in the area of vulnerability as well as in the area of recommended action.
We would like to be assured that selected commissioners and advocates will adequately represent the rights of women. Therefore, we believe that half of these appointed commissioners and advocates should be women who have demonstrated a concern for women's equality. This is a somewhat general statement, and perhaps it would have to be redefined if it were drafted in legislation. We leave that to you. But vulnerable persons who are women may be pregnant, and the structure of the system of advocates should not result in anti-choice people being appointed to act for such persons. Just as vulnerable persons with Alzheimer's disease or with physical disabilities need an advocate who understands their condition, so pregnant women need advocates who know how fundamental the right to choose is to women's equality. Advocates should not have personal or religious agendas that prevent them from advocating on the whole range of legal options available to the incapable or vulnerable person.
The concerns expressed here regarding advocates and commissioners appointed under the Advocacy Act also apply with respect to the composition of the review board described in section 10 of the Consent to Treatment Act. The Advocacy Act will presumably apply to the advocacy system described in section 10 of Bill 109. We note, however, that the Advocacy Act currently does not apply to those under the age of 16. Once again, we would like to see this age limit removed, as we believe that youth may be among those vulnerable persons most in need of protection.
An Act respecting Natural Death, Bill 8, and the Substitute Decisions Act, Bill 108: As an organization concerned primarily with a woman's right to choose in the matter of abortion, we strongly believe a woman's individual rights should not at any time or in any way be curtailed because she is pregnant. Pregnant women must be accorded the same rights as everyone else, and therefore the living will of a woman who is pregnant should not be invalidated because of that fact. Dying women must not be turned into unwilling incubators by the state.
In Bill 108 the government did well to draft a bill which does not make an exception of pregnant women. We hope the committee will confirm this version of the legislation and defeat any amendments which would make such an exception of pregnant women.
Bill 8, submitted by Mr Sterling, contains a clause which makes a woman's living will invalid when she becomes pregnant. CARAL urges the committee not to vote in favour of this legislation.
Consent and Capacity Statute Law Amendment Act, Bill 110: We believe that the regulation under the Ontario Public Hospitals Act requiring a person to be 16 years of age to sign a consent to surgery should have the age references specifically removed or should be struck out entirely as inconsistent with the Consent to Treatment Act as we would like to see it amended. The age requirement for a signed consent to surgery has always caused us a great deal of concern and has had a significant effect on doctors' perception of their duty to young teens requesting abortion. It has also likely caused some of the confusion concerning the position of the common law with respect to the age of consent. This legislation may in fact be partly responsible for many doctors' and lawmakers' belief that the common-law position concerning consent rested at age 16. This regulation of long standing does not take account of the fact that today half of young people aged 16 are sexually active and may require abortion services.
We hope that the consent to treatment legislation, because any definition of "treatment" would certainly include surgery, will supersede the age restriction for signed consent regulation in the Public Hospitals Act. Therefore the removal of an age limit in the Consent to Treatment Act would effectively remove any age barriers to consent with respect to surgery performed in a public hospital. If this is not the case, we ask that age references be removed from the Public Hospitals Act and doctors simply evaluate capacity based on their own professional judgement, and obtain informed consent.
Our recommendations:
1. To replace the current section 8 with the amendment proposed by the Progressive Conservatives. Such an amendment will eliminate the need for section 9 and clause 45(d) contained in the current Bill 109. Standards and criteria for determining capacity shall be the responsibility of individual health practitioners and not legislators.
We also support the Progressive Conservative amendments regarding the definition of "treatment."
2. We recommend that subsection 10(7) be removed from the proposed legislation and that subsection 10(1) be amended to apply to all persons found incapable, regardless of age.
3. Half of the commissioners and advocates should be women. Advocates appointed to represent vulnerable women should have demonstrated a belief in women's equality. We believe the same criteria should apply to the review board constituted in section 10 of Bill 109.
4. We recommend that the committee vote against any legislation which contains a provision which would make a living will invalid if a woman becomes pregnant.
5. We recommend that the age reference be removed from the Public Hospitals Act with regard to consent to surgery.
Thank you for your attention. We welcome any questions you may have.
The Chair: Thank you. Each caucus has about five minutes.
Mrs Sullivan: I think that one of the areas where we have apparently reached consensus on this committee relates to the recognition of the mature minor. Indeed, when the Minister of Health was before the committee she indicated that there would be amendments in that area. We, of course, have been pressing to see the amendments, and in fact to see whether they meet the needs of the groups and agencies that will be required to act under the law and that the law may or may not benefit, but the government has been reluctant to put those forward.
You have mentioned the regulations under the Public Health Act being affected, and I am sure the parliamentary assistant will want to take that into account in terms of the age issues. We have also noted that there are serious age issues associated with consent to treatment under the Child and Family Services Act where a child may be a ward or in a foster home or where there may be intervention in the case of the gathering of evidence for incest investigation purposes and so on.
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I was also struck in your presentation, juxtaposed as it was with the previous presentation, and the emphasis of both groups -- one would assume whose moral judgements are quite different -- stressing the necessity for the independence, for the neutrality, if you like, of moral and religious judgements on the part of the advocate and, in fact, for the advocate to have knowledge of the patient's moral, ethical and religious judgements before participating in any way to put forward the patient's case or even to provide advice. I thought that it was quite interesting and pertinent for the work of the committee that those issues have been put on the table not merely from one ethical perspective but virtually from several, and I know that that has been a concern.
You see the young advocate as having an impact on the decisions of the patient. Clearly we do, as evidenced from the exchange during the last session. The government does not appear to see that the advocate would have any influence, even given the quite extraordinary powers that the advocate has under this legislation. I wonder if you have examined where an advocate indeed may have a negative impact on the autonomous choices of a patient.
Ms Holmes: First of all, we are concerned that advocates not be called in unnecessarily and that patients, because of dealing with fearful doctors or doctors who want to do things properly but now that there is an extra burden of legislation in effect will be bending over backwards to invoke whatever powers they need to invoke, will have advocates who do not need advocates -- 15-year-old girls who are pregnant, for instance. We are also concerned that if they are going to have an advocate because perhaps they are genuinely incapable of making their own decision, then those advocates ought to be people who will tell them about all of their legal options.
It is not so much a matter of my perspective or your perspective or if I am taking on the perspective of the patient. But in the case of abortion, someone might presume that if you come from a certain religious background you are going to be someone who does not believe that you should have an abortion. This may not be the case. We know that Catholics, for instance, have abortions in about the same proportion as the general population and they are pro-choice in about the same proportion. So it is an attempt to avoid this type of coercive situation that we express our concern that the commissioners and the advocates be selected from not just certain volunteer groups or people who -- there should be some care exercised in who is picked. They should have to agree that they are going to present all of the options to any patient whom they are helping.
Mrs Sullivan: Thank you.
Mr J. Wilson: Thank you very much for your presentation. I particularly appreciate the support of two of our amendments. I note you do not support one of the sections in one of Mr Sterling's acts, but I would remind you that it is a private member's bill; do not hold it against all of caucus.
Interjections.
Mr J. Wilson: Two out of three ain't bad, as they say. But really, in all seriousness --
Mr Winninger: We thought you were being serious.
Mr J. Wilson: I was. We believe in free votes. You thought the Reform Party made that up, but look at the record of our party over the years.
None the less, I was really going to ask you the same line of questioning as my Liberal colleague. That is one of the disadvantages we have. For some reason the Liberals on this committee always get to go first rather than alternating who asks questions first.
Mrs Sullivan: Next election, you will be in opposition.
Mr J. Wilson: Well, that is true.
Mr Sterling: We will be leading.
Mr J. Wilson: And I do not think the Liberals will be leading.
None the less, because it did strike me that you are worried about some bias on behalf of advocates also, and the government consistently tells me -- although we get mixed messages on exactly what advocates are supposed to be doing, the more consistent answer we get is that they simply express the views as articulated in some manner by the vulnerable person. Is that what you see advocates doing? There are advocates out in the community now that do that and other things.
Ms Holmes: Yes, that is right. I think it is entirely possible for them to do that but I think we just have to watch how they are selected and who they are.
Mr J. Wilson: You mention selection, but what about accountability in the system? This is an arm's-length commission now and there is really no accountability. Where do you complain if you find an advocate that has a religious bias that may be distorting the decision of the vulnerable adult? Where would you go?
Ms Holmes: I suppose you would go to the commission. You might have to call on the government. You might have to go right to the top.
Mr J. Wilson: I think it points out the problem because this is at arm's length from the government.
Ms Holmes: But we have these problems --
Mr J. Wilson: A biased commission.
Ms Holmes: We, as an interest group, have these problems throughout all of the institutions in society. We cannot do away with the department of education in all the schools just because there are some teachers who are anti-choice and are preaching their views from their positions in the classroom. Yet we have that. There are school boards that make abortion a taboo subject. We have to complain about these things. Eventually, we will make some changes.
Ms Akande: Thank you very much for the presentation also. I was interested in your description. Certainly the need for advocacy has been long established, even previous to our coming to power. Certainly the O'Sullivan study estimated that we would need approximately a million advocates in Ontario and there have been other studies even before that time.
When one sets out to design an advocacy system and they draw their net widely, not only in terms of the design of the program so that it is in place for those who may need them, but also in terms of the selection of those who will assume the role so that they may do their job with the kind of objectivity you think is so important. Your words are well taken. One of the things I was concerned about, though, is that in your recommendation 1, for example, you say "Standards and criteria for determining capacity shall be the responsibility of individual health practitioners and not legislators."
Ms Holmes: We believe that doctors ought to be the ones who have the responsibility for determining whether a person is capable or not. Otherwise, it is something that has to be -- you have to call in a complicated system for everyone under age 16, unless the doctor has decided to rebut that presumption, but we do not believe doctors will do that. We think they will just take that age 16 as a cutoff and when they get a person under that age they will not do anything about it. They will just say, "Well, you're under 16 and I am worried that your family may be upset about this and I can't ensure your confidentiality etc."
Ms Akande: I can see your concern about 16 and I share it. Let's be frank and say that to you. But I also have concern about it being left up to the individual health practitioners to call it, with a great deal of variation, perhaps, in terms of what one might see as a capable person or a young person and what another may not. Would you expect that there would be any intervention at all, perhaps criteria by which people might assume or try to draw some kind of standards for making that decision?
Ms Holmes: The problem is that whenever you get into trying to write it down and draw up standards, these can be a stumbling block which delays treatment. In the case of pregnant women in general and teens in particular, there is no time for all of this paperwork. We are worried about referrals to other practitioners and other specialists. You know: "Let's see if you're capable. I will give you a psychological test or I'll send you to an agency that will do a battery of tests to determine if you're capable."
Ms Akande: No, I am not suggesting that.
Ms Holmes: I would say clause 45(d) would be very intimidating if I were a doctor.
Ms Akande: Would you concede that perhaps there might be a role for an additional person, in combination with a doctor, to assist in this determination?
Ms Holmes: Why complicate the process?
Ms Akande: Because those who have sometimes been responsible for it may in fact be the very people against whom you want to question.
Ms Holmes: I think the government is then getting in between the doctor and the patient, and that is something we take a very dim view of. We want to have our privacy with the doctor, and if we want an abortion, we want to be able to deal with that as a private matter between the patient and the doctor.
The Chair: Ms Toogood and Ms Holmes, on behalf of this committee I would like to thank you for taking the time out this afternoon and coming and giving us your presentation. While we set up the VCR, we will have a brief recess.
The committee recessed at 1512.
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The Chair: I call this committee back to order.
QUEEN'S UNIVERSITY, FACULTY OF LAW
The Chair: Our next presenters are from Queen's University, faculty of law. Good afternoon. As you know, you have 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 Reitsma: Good afternoon. My name is Kelly Reitsma.
Ms Putnam: I am Violet Putnam. I am not a professor. I am a student at law.
Ms Hodgson: My name is Lenore Hodgson.
Ms Reitsma: Today what we will first be doing is watching a video presentation. In it, myself and Ms Hodgson interview Miss Putnam. It was meant for a class presentation, so it is a little bit amateurish. We hope it does not insult you in any way.
Mr Poirier: It is okay. We are MPPs; do not worry about it.
Ms Reitsma: In it we feel there is something really useful. We interview a senior member of the Kingston community. We hope you find that very useful in this respect. I will just turn it on now.
[Video presentation]
Ms Putnam: We are going to fast-forward through this part because we do not think it is very relevant and we will start in with the interview with the 74-year-old lady in Kingston. She is a very articulate senior citizen and has some really progressive ideas that I think would be good for all of us to hear.
This lady runs a program of swimming for people who need aquacise in the pool in a rehabilitation hospital in Kingston, St Mary's of the Lake, and organizes the whole thing. I think there are three classes three nights a week and she has them topped up with a waiting list. She is there almost every time and she has a deputy to fill in for her and she is 74 years old.
I was speaking to someone here a bit ago -- it is not an original idea; I read it -- and said these seniors who are presently coming on board the senior citizens' platform and those who will be joining us annually are probably the best-educated senior citizens Canada has ever known, so there is going to be a pool of knowledge and experience there that we should perhaps access.
[Video presentation]
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Ms Reitsma: I thought I would cut it off a bit early because we are getting close to the time. In our brief it may seem a little bit conflicting: We encourage the implementation of advocacy services and at the same time we encourage increasing lines of communication for family members, and this we see in Bill 108, section 17. Placing public trustee representatives in each region is outlined on pages 1 and 2 of our brief. I feel that both vulnerable persons and their families both must be accorded respect and participation in the mental health law regime. In that regard, I believe our proposal fosters the necessary cooperative spirit.
The proposals outlined on pages 1 and 2 in relation to families of vulnerable persons are intended to reduce frustrations that families presently experience with the office of the public trustee and accord the family respect in a way that reduces its ongoing stress.
The qualified advocate may also play a role, we feel. This role of the advocate may be expanded in Bill 74 and Bill 108 to allow the advocate access to financial statements. This may be viewed as an intrusion by family members, but we cannot always assume the family members are going to act in the best interests of the vulnerable person.
As I see it, there is lacking in Bill 74 a mechanism for fostering communication between the family and the advocate. This is addressed perhaps in clause 7(1)(h) in Bill 74, but it is really limited and it is not just for the family. I see this as a way of fostering a cooperative atmosphere and also reducing the workload of the advocates, as the family perhaps can take on more responsibility and understand the process better. Perhaps the adversarial orientation in Bill 74 needs to be refined in this way. I believe it is in everyone's interests to encourage this cooperative relationship.
Ms Putnam: My concern today stems from the Cedar Glen episode -- my presentation is on page 3 -- and the death of Mr Kendall, because there was no way anyone could get into that place for a year to rescue him and his fellow patients, or guests or whatever they were called, from an abusive situation. As I recall, one woman was so badly injured she went to hospital for eight months, but nothing happened. It required Mr Kendall to die before somebody could get in there. They went to the advocate office in Toronto; they could not get in. They went to the police; they could not get in. Officially, nobody could get in because it was private, even though they were living on public funds they got for looking after the patients. My concern is that if the bill cannot be passed right away, could we have some interim emergency legislation put in place to address that problem?
I have looked at Bill 74, and from section 16 to section 23 is the advocate's right to entry. I would like to see that section modified and either set up as an emergency situation or woven into existing laws. I looked over the Powers of Attorney Act. It could be inserted in section 8. I looked over the Child and Family Services Act and saw that it would fit nicely in section 40 or section 40d; also section 71, which is a child abuse register. If the abusers at Cedar Glen get out, I think they should be on a register. I do not think they should be allowed to go out and set up a new setup. I mean, the money is pretty nice, especially when you do not have an education, you do not have a trade, you are middle-aged, and if nobody knows you. I just think the doors should be closed and their names should be on a register.
I would like to see, as in the case of child abuse, that if people do not report offences they are fined. That is part of the Nursing Homes Act, that if people do not report abuse they observe or know of, they are subject to a fine and/or jail term. Children are precious, but elderly people's pain receptors are just about as acute as those of children. It is terrible to have to wait a year to be rescued. It is terrible to wait a week to be rescued from an abusive situation.
On page 4, I have an excerpt from the actual court case regarding Mr Thibeault. I prepared this for a class. Those are the horrible things that happened to him before he died. I believe that was reported by the staff, but there was nothing in place to say that the staff would be punished if they did not report it. In fact, if they did report it I assume they would lose their job.
This is another thought I had. Using the Mental Health Act, the official guardian is listed under section 1a as a substitute decision maker. Could we expand his role and the agents he has in place in every area in Ontario? If there is a report of abuse, perhaps the official guardian could send a note and say, "Please investigate." I know they are all lawyers, but they are better than nothing, and nothing is what we have right now.
Mr Winninger: I wish to dispute that.
Mr J. Wilson: Did you get an A on that project?
Ms Putnam: I got an award.
I feel very strongly about it and I am quite upset that we could sit and talk about what is good about Bills 74, 108, 109 etc, and there are people right now -- I have to be careful not to say the wrong thing, but I have talked to people who are dealing with people who are abused and they know that abuse is going on but they are powerless to do anything about it because in their organization they do not have the power.
They go to work and they spread the word among people who would refer people to live in that place and pay $1,500 a month -- it is not unusual -- and if you have five people at $1,500 a month you have a pretty good income. Elderly people do not eat much. They just like to be warm. They quietly spread the word this is a bad place and patients stop going there. One person I talked to said they had shut down three, quietly, but their organization is at risk and they personally are at risk and yet they feel so upset about these people being abused that they put themselves on the line. I do not really think it is fair that they should have to put their careers or their organization on the line when it is something that should be legislated and that they have the power to do.
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If there is no money to put it in place right away, I suggest that we use existing organizations like the Victorian Order of Nurses. They go into homes and they are accepted; public health goes into homes regularly and they are accepted and trusted. They have a good track record of being trustworthy and caring people. The Community and Social Services people are the same way. That would give protection to the people who are sitting there and are so vulnerable and yet would give time to build the structure required by these bills. That is what I feel strongly about.
We are talking about advocates. The three of us all did placement work at Kingston Psychiatric Hospital and we saw the patient advocates at work. They do some good work, but there is also a need for training. Perhaps you could tell us what you observed on the review board.
Ms Hodgson: I have canvassed a number of psychiatrists and some have been impartial to the advocates, some have been resentful and some have found them very helpful. I have really one proposal to make to this committee: that it integrate some sort of workshop into the system for training of the advocate. From what I have seen attending review board hearings and just normal interaction in the hospitals, there is really no integration between the psychiatrists and these advocates. They are sort of portrayed as the devil and they are not integrated into the system. What I propose is some sort of workshop or some sort of training before they are actually implemented to a fuller scale. Thank you.
Mrs Sullivan: I am interested in the questions you raise about the training of advocates and so on. We are very concerned under this legislation. It may make a nice next project for you to look at the entire question of the scope of mandate of the advocates being developed through regulation without public input and without definition of indeed the kinds of training and the kinds of skills that would be required.
In a health setting, for example, I suggest to you that it is useful for an advocate to have information about the nature of the treatment and the nature of the illness before that advice is being presented. In Bill 74 we see that advocates have powers of entry that are greater than the police now have. In Bill 74 we see that advocates have the right of access to clinical records that we feel is problematical. I think that maybe in the next phase of your project you might like to look at some of those issues.
There have been suggestions that we think are very interesting ones about using a pilot project. As you define one community and look at existing agencies where advocacy does exist and is put in place in a substantial way, the circumstances in one community may be very different than the circumstances in another.
One of the things you did not raise that I think is very important is that we have had very clear testimony before the committee that the advocate's role may indeed interfere with the provision of timely and appropriate health care. That is one of the things where, while it was not the intention of the act, it is clearly the result of the legislation if it is written this way. We are told that amendments are coming forward. We have not seen those amendments. We are very concerned that we have had numbers of weeks of hearings with people presenting on the bills as they are written, with no access to or information about proposals for amendment to those bills, and indeed no commitment of the government that there will be a public consultation process after those amendments are put forward. There is another term paper for you.
Mr J. Wilson: I thought it was a very balanced presentation, actually. You point out support for the bills but also some improvements. You also touch upon the financial aspects, and I do appreciate your comments that perhaps the VONs and the health care units and that do now act as advocates, and that is something we have heard before the committee and it is something we have tried to point out to the government: that you may not have to go to the expense of setting up a new Advocacy Commission.
I do want to ask you a question, though, because you have had experience in the mental health setting where an advocate is present and you have witnessed something of an adversarial relationship. Do you see anything in Bill 74 that would diminish that adversarial relationship?
Ms Putnam: Whom are you asking?
Mr J. Wilson: Whomever is comfortable with that.
Ms Putnam: I think they are trying to leave it open to the community, to the family, to already established organizations in the community, and I think that could lead to the choice of an advocate who would be more open and not so adversarial. I did volunteer work at the Homewood Sanitarium, and it and the Royal Ottawa Hospital have the volunteers doing the advocacy. I found a much better relationship there between the staff and the advocates than I see in -- I have only been to Kingston Psychiatric Hospital, but there is an adversarial relationship in the public hospital. There is a very cooperative relationship where the volunteers are going to the floors -- They seemed to welcome me with open arms when I went up; the files were out, they took me to the rooms -- but in KPH there was not a connection between the advocates and the staff, so I would like to see that changed.
Mr J. Wilson: Very briefly, though, I was disturbed to hear of people who may be aware of abuse and are afraid to report it. May I suggest if the current system is so backlogged that people cannot access reporting mechanisms there -- for instance, I know it will be two years before the Ombudsman's office gets around to it. If someone does not want to go to the police, perhaps in confidence you can go to your local member of provincial Parliament --
Ms Putnam: That is right.
Mr J. Wilson: -- who should be doing that in that community. So you might suggest that. Some people do not think of that avenue. They think of all these other structures, but MPPs there can do exactly that.
Mr Malkowski: The three of you gave a very excellent presentation. It was a great project. It is very educational for all of us here on the committee to hear the views you express, and we appreciate your support for our legislation to protect vulnerable individuals. I would like to know, from your own experience in meeting with the professional health care workers, did it seem that there was a lot of resistance to the concept of advocates going in to talk with vulnerable individuals, and how would we then alleviate that kind of resentment if that was the stance of some of those professionals? What would you suggest?
Ms Putnam: We cannot seem to think of anything we have not already said.
Ms Reitsma: Lenore had a very adversarial experience and a very confrontational experience when she was there. There are a number of things that happened. Lenore suggested workshops.
I see Bill 74 as very adversarial. I see that one way of reducing all those tensions is fostering a cooperative spirit between families and the advocate and, in some way, fostering a relationship between the advocate and the psychiatrist, which is very difficult. There is a lot of confrontation between people who want to assert rights and the psychiatrist who wants to help. That always happens between the law and psychiatry, and in this regard it is also -- I do not know if there is any one way to solve it. I think it is very difficult.
Ms Putnam: There is a British author who stated that people have the right to refuse treatment, and the advocates seem to go on the side of, "You can refuse treatment; it's your right." But this British author stated -- and I agree with him -- that there is a point where, if treatment will get these people off the rolls of disability so that they can be self-sufficient, do they have the right to be for ever ill when it is possible for them to be made well? Where do we draw the line? Where do the rights of those who have to pay the bills have some impact on the cost of allowing these people to stay sick? There should be a cutoff point.
The Chair: Ms Reitsma, Ms Putnam and Ms Hodgson, on behalf of the committee I would like to thank you for taking the time this afternoon and giving us your presentation.
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ROYAL COLLEGE OF DENTAL SURGEONS OF ONTARIO
The Chair: I would like to call forward our next presenters from the Royal College of Dental Surgeons of Ontario. Good afternoon. 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 of the caucuses. As soon as you are comfortable could you please identify yourself for the record and then proceed.
Dr Beyers: Yes, thank you, Mr Chair, and members of the committee. My name is Dr Richard Beyers. I am the president of the Royal College of Dental Surgeons of Ontario. With me are Dr Minna Stein, the deputy registrar of the college, and Mr Alan Bromstein, legal counsel for the college. Just to remind you, it is the college's role to govern the practice of dentistry and, for a short while yet, dental hygiene in Ontario, and to do so in the interests of the public. Without going any further myself, I think I will turn this over to Dr Stein who will make the presentation.
Dr Stein: Let me begin by stating that the college fully supports the principle that a person has the right to determine whatever treatment he or she will receive. It also unconditionally supports efforts to ensure that a vulnerable person is not subjected to health care decisions without first obtaining that person's input and in appropriate cases an independent assessment of the capability of that person to consent to the proposed treatment. Unfortunately, unless substantially amended, the proposed legislation, and in particular Bill 109, may have negative effects on the health care provided in Ontario.
Let me elaborate on the college's major concerns. We believe that the scope of the legislation is too broad; the legislation applies to all treatment. This term is defined as including not only therapeutic intervention, but also preventive and diagnostic measures. Therefore, in practical terms, a patient undergoing a clinical examination is given the same legal protections as one having major surgery. While this is philosophically laudable it is not practical or, in the college's view, necessary.
Furthermore, the legislation applies equally to health practitioners regardless of what they do. As a result, the same safeguards are in place for health practitioners who do not perform any invasive procedures, such as denture therapists or dental technologists, as for those who do, for example dentists, dental hygienists and physicians. The college is of the view that the scope of the legislation must be narrowed so that only certain forms of treatment would be included.
Some treatments, such as those that are serious or irreversible, require the intervention of this legislation to ensure that the interests of the vulnerable patients are protected, while other forms of treatment, such as simple dental examinations, ought not to attract the same complex bureaucratic procedures. As you are aware, this is a view that is also supported by the Regulated Health Professions Act, recently given royal assent in the Legislature. In that legislation, only certain acts which are considered potentially harmful are controlled or restricted to regulated health practitioners. All other health-related acts are in the public domain and hence can be done by anyone.
Unfortunately, the provisions of Bill 109 are adverse to the controlled act concept in that (1) all treatment is given the same degree of protection whether the treatment is inherently dangerous or not, and (2) all registered health practitioners are required to follow the bill's procedures regardless of the nature of the treatment to be performed.
Furthermore, as currently proposed, when a regulated health practitioner performs treatment which is not a "controlled act," the provisions of Bill 109 would apply. However, should the same treatment be provided by an unregulated person, the provisions would not apply. This clearly could not have been the intention of the legislation.
What is needed is a clear understanding of exactly what types of treatment require protection for the vulnerable patient. If protection is required, the legislation should be made applicable to anyone who may legally perform the treatment.
Another area of concern to the college is who should be included in the term "incapable" under Bill 109. We feel the legislation does not adequately address the practicality of including all children, regardless of age, under that term.
An example to illustrate this point is a situation where an extremely sophisticated but fearful 12-year-old child attends the dental office with a badly decayed tooth and adamantly refuses to allow the dentist to give an injection of local anaesthesia to treat the tooth, although it is clear the child is in pain. The parent demands that the dentist treat the patient. The child not only expresses the view that the dentist should not treat him, but that he has the right to make his own decision and that the dentist should not listen to the parent. Believe me, having been a practising dentist for many years, that does happen.
The practitioner knows that if the local anaesthesia is given, the child will be pain-free and will calm down and ultimately be thankful for the treatment. He also knows that without the treatment, the pain will increase, the infection may continue and further complications will likely result, including the loss of the tooth.
Is this the type of case where an advocate should be called? Is it responsible to ask a dentist to tell the parent that the child cannot be treated until the procedures of Bill 109 have been followed? Do you believe the public of Ontario would accept such a response from a dentist?
The college does not believe it would be responsible to delay treatment in order to determine whether the 12-year-old child is capable, especially considering the nature of the proposed treatment and the procedures required by Bill 109.
Furthermore, the sections of the bill dealing with emergency treatment need substantial change. A practical example of problems related to this is a case where an eight-year-old child is brought in to the dentist's office by a neighbour. The child presents with his front tooth in his hand. There is no medical risk in doing nothing, but there is a reasonable chance that the tooth may be successfully reimplanted if immediate treatment is given. Neither the parents nor any other consent giver can be found. Any delay on the part of the dentist, however, will make the success of the treatment less likely.
Reading section 22 of Bill 109, it is unlikely that any dentist could attempt to save the tooth, because the patient is not likely to suffer any serious bodily harm if that dentist were to do nothing. The child simply would have permanently lost the tooth. We believe that today a dentist would treat the child and attempt to reimplant the tooth. That dentist would then ensure that the parent or the guardian of the child was contacted and that the risks associated with the treatment were explained. If the parent or the guardian did not wish to accept those risks, the treatment could easily be reversed and no harm would have resulted. Most likely, however, the parent or the guardian would be grateful for the dentist's efforts in attempting to save the tooth. That has certainly been our experience.
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The college is seriously concerned that this legislation may create such apprehension in the minds of practitioners about their personal liabilities that the safe route would be taken; that is, that no treatment would be provided. If this happens, the patient obviously would be the loser.
We believe that children and the problems associated with obtaining adequate consent for their treatment deserve their own unique considerations. We are concerned that the affording of Bill 109 protection to all children under 16 years of age will either cause the legislation to be ignored or will have a profound negative effect on health care administered to children of this province.
The college's second major concern is that the legislation is too complex. In examining Bill 109 one must always remember that it is the practitioner who has the gatekeeper's duty to ensure that consent is obtained. The college has spoken to many dentists who, despite reading and re-reading the legislation, do not understand what they are required to do. As well, these practitioners ask meaningful questions arising out of practical examples which occur frequently in their offices. The answers to these questions are difficult for both laymen and lawyers to provide, and in many cases the answers cannot be given with any certainty.
For this legislation to be effective, it must be simple and easily understood. It should provide to the practitioner who attempts in good faith to follow its instructions a confidence that no liability will follow from that practitioner's actions. The legislation must also be looked at in the light of practical examples to see if it will work in the manner intended without negative implications. The worst of all situations would arise if practitioners ceased to treat vulnerable patients due to the complexities and uncertainties of this legislation.
The third major concern related to Bill 109 is that it inappropriately alters the law of informed consent. The doctrine of informed consent is one which provides needed protection to the public. This doctrine is accurately and fully described in legal jurisprudence including the Supreme Court of Canada's decision in Riebl v Hughes. As the Supreme Court of Canada has indicated, it is a doctrine associated with the law of negligence and not with the law of assault and battery.
The doctrine of informed consent requires a practitioner to advise the patient of material risks. However, liability for failure to advise of a risk of treatment does not follow unless harm from that treatment has occurred and a reasonable person, having regard for that patient's personal circumstances, would have refused the treatment had that person been made aware of the risk. This doctrine balances the need to protect the public with the rights of the practitioner. It also is clearly understood currently by health professionals.
Bill 109 attempts to put the doctrine of informed consent into precise legislative words. By doing so, the draftspersons have unwittingly, and without legal or logical basis or need, expanded the concept.
An example of this may be the situation in which a practitioner consults with a patient who is clearly capable. The patient is seeking treatment for a badly decayed tooth and the dentist recommends a crown. Some of the risks associated with the treatment are discussed. However, the dentist neglects to describe the alternative course of treatment -- namely, the extraction of the tooth -- and, further, neglects to tell the patient of a risk, namely, that the tooth may require endodontic treatment in the future. By virtue of subsection 5(2) of Bill 109, an informed consent has not been given. Does this mean that the dentist, by law, assaulted the patient when he performed the treatment? Does it mean that the dentist is liable for the failure to describe the risk even if the risk has not occurred and may never occur?
As proposed, Bill 109 allows virtually all patients to claim that one or more aspects of informed consent have not been met. Furthermore, the legislation does not adequately explain what the practitioner's responsibility is for failing to obtain informed consent. The doctrine of informed consent does not need to be modified by this legislation. To do so would give rise to additional litigation where lawyers will use the provisions of Bill 109 to argue that the law, as previously expressed by the Canadian courts, has been altered.
In summary, I would like to summarize that we would recommend the following amendments to Bill 109:
The first recommendation is that treatment be redefined to include only those health care services that are potentially harmful, and for some other reasons significant to the patients who are intended to be protected by this legislation. To be both meaningful and effective, protection should be afforded to the vulnerable person where that protection is reasonably necessary. The nature of the protection to be afforded must be flexible and based upon the nature of the treatment and the particular circumstances of the patient.
The second recommendation we have is that except for those surgical procedures which require treatment in hospital, dental care be excluded from Bill 109 relative to all children under the age of 16 years. Whether protection is to be afforded to a child under 16 years of age should depend upon the nature of the treatment. In the college's opinion, only those aspects of dental treatment which may be performed in hospital are sufficiently serious to warrant a change in the current practice of obtaining consent from the child's parent or guardian.
The third recommendation we have is that the doctrine of informed consent be eliminated from Bill 109. As previously indicated, the doctrine of informed consent is one which has been developed in the law of negligence. The issue as to whether a practitioner failed to obtain informed consent is one to be dealt with by the courts based on current jurisprudence. There is no need for legislation to change the law and Bill 109 should not attempt to do so.
The fourth and final recommendation we have is that the legislation be made simpler and provide greater certainty for those practitioners who, exercising good faith, attempt to comply with its provisions. The true test of legislation is whether practitioners to whom it is applicable can understand what is required of them. If those practitioners perform treatment in a manner they reasonably believe is consistent with the legislative intent, no criminal or civil liability based solely upon treatment without valid consent should follow.
In conclusion, I would like to say that we are hopeful our recommendations will assist you in making the amendments you feel are required to enhance the proposed legislation.
If you have any questions, I would be more than happy to answer them. Thank you very much for your attention.
Mrs Sullivan: Thank you very much for this presentation. I particularly appreciate the discussion you have included at the beginning of the presentation relating to the controlled and authorized acts. It seems to me it is quite clear that there is going to have to be a major redraft of the "treatment" definition in this legislation, and that distinction may well be one that ought to be incorporated into a new amendment. Unfortunately, the government has not yet put forward its amendments and we are extremely concerned about that.
I also like the point you have made about the regulated versus unregulated professions. I think that is one that ought to be looked at.
You have not addressed the question of capacity training. I would be very interested in knowing, first of all, what training dentists are required to undergo in terms of determination of capacity or competence of the patient, and indeed the allied dental industry, whether it is hygienists or dental technologists and so on who are involved in the delivery of dental care, what training they have in the determination of capacity, given that the way the act reads now, every person delivering care along the way would be making individual determinations of capacity.
Dr Stein: I certainly agree with you that every person along the way will be making that determination. As far as I understand, at the present time this is not something that is included in the curriculum of the dental school or dental hygiene or a dental assisting. It is something that will have to be addressed if this legislation is put into place. At this point in time I do not believe there is anything taught, certainly nothing to make the practitioners able, with any assuredness, to determine who has capacity within this situation or who is incapacitated.
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Mrs Sullivan: The other aspect to that, I suppose, is what parameters or teaching are presented to the dentist or the allied professions in terms of steps to be taken in determining who the substitute decision-maker is for the incompetent patient. None of that is done either.
Mr J. Wilson: Thank you for your presentation. To be perfectly frank with you, I am surprised how friendly your presentation is towards the legislation, because we have had other dentists here who certainly do not like the legislation. I understand what you are doing, and that is to try and be as constructive as possible given that the government will go ahead with some form of legislation. It seems to me, though, that while the tone of the brief is friendly, as I say, your recommendations, really, for Bill 109 are fairly major when we get down to the legal text and may back up what the opposition has been saying, that we should be redrafting this legislation. We really feel that Bills 108 and 109 can go forward in some version, but not the one we are currently stuck with, so your recommendations there are helpful.
I did want to know whether you had any comments at all on Bill 74 and the Advocacy Act, though. That seemed to be a concern of some dentists who came forward and wondered, when they are required to call in an advocate, about the availability of advocates' training and the accountability. Do you have any thoughts about that?
Mr Bromstein: Apart from the obvious concern that the advocates were not being provided for children, which I gather was an oversight, I think there was no comment addressed to that because we had difficulty seeing, on a day-to-day basis in most dental offices, how the advocate really was going to function. A very small but not less important number of the Ontario populace will be affected who will be deemed incapable who would be in the non-children sector and would be treated generally by dentists. We understand how some of those people will need protection. This addressed the people who we thought perhaps were being encompassed but in fact did not need protection.
Mr J. Wilson: For the procedures you mention that perhaps the act should apply to, did you envision -- you just simply say those procedures that would require treatment in hospital.
Mr Bromstein: For children.
Mr J. Wilson: For children. That is specifically for children. That is my answer to that one. You would sort of list those procedures in an addendum to the act or just whenever -- I just think of myself when I was young. I had a choice between having a procedure done in a dental office or down the street in the hospital, depending on the availability, really, of the surgical room in the hospital.
Mr Bromstein: Those alternatives do not exist today the way they did at that time.
Mr J. Wilson: I am not that old.
Mr Bromstein: Changes occur frequently, though. There are only the most major oral surgical procedures, I think, that are generally performed in hospital, with some limited exceptions.
Mr J. Wilson: I see. So it is pretty cut and dried now.
Mr Sterling: I would just like to ask one question. Did you pick 16 years of age because of section 8, I think it is, which indicates that everybody under 16 -- or 16 and under; I am not certain which, but it does not matter for the purposes of the discussion -- is considered incapable or incompetent? Is that why you picked 16?
Mr Bromstein: I think it was. Once again, it is a line that you have to draw somewhere. We understand that. The draftspersons had drawn it at 16 and that did not seem unreasonable to the college, so we stuck to that line.
Mr Sterling: I think, from comments we have heard in the last couple of days, that the 16 is probably going to be removed. I would think the government might accept an amendment similar to the one that we introduced, which was that the common law be codified and that -- does that change the age at all? One of the problems with what you are saying here is that people who are 16 and who are incompetent have protection, and people who are 15 do not. You face a problem whenever you draw an arbitrary age that way.
Mr Bromstein: I think we were trying to say in this presentation that in so far as children are concerned, dentistry does not have a problem today. The suggestion that we would live with the laws that now exist in so far as children are concerned would be one that would probably find favour with the college, but we used the 16, as you suggest, because 16 was in the legislation.
Mr Wessenger: Thank you for your presentation. One thing I would just like to make clear is that Bill 109 does not in any way change the principles of the existing common law, and I might run through some of your scenarios under the existing common law.
Scenario (a) is the 12-year-old child. Under the existing common law, you would right now have to determine whether that child was capable or not in determining whether to provide the treatment. If you determined the 12-year-old was capable to consent, then of course you could provide the treatment to the child. If you decided he was not capable, then of course you would look to the parent.
Second, with respect to the 14-year-old, it is the same question. You have to determine the question of capability right now. In other words, you would be breaking the law if you treated a 14-year-old child or a l2-year-old child whom you deemed to be capable, because they would have authority to make the decision with respect to their health care. That is the existing law.
With respect to item (c), that is probably one of your more difficult scenarios. I would suggest to you that even under the existing law it would be possible to argue that a child of eight would have enough capacity to decide whether he or she wanted to keep the tooth and could make a decision in that regard.
With respect to your item (d), I would clearly indicate that informed consent is a very important principle of this legislation, and I disagree with you on that point.
The Chair: Mr Bromstein, Dr Stein and Dr Beyers, on behalf of this committee I would like to thank you for taking the time out this afternoon and giving us your presentation.
SCHEDULING OF PRESENTERS
The Chair: Mr Winninger.
Mr Winninger: Am I introducing a new motion or are we still considering my motion made prior to the lunch-hour?
Mr J. Wilson: You just keep considering that motion.
The Chair: The previous motion was withdrawn.
Mr Winninger: Why do I not introduce a new motion, having withdrawn the previous motion? I still rely on the submissions I made before the luncheon recess; however, I am now moving that a letter go out over the signature of the clerk of this committee expressing the strong desire of the committee that this particular individual who is presently in Kingston and, if need be, the other individual at Mimico, be allowed to attend before the committee. That, I hope, will go a long way towards encouraging the health facility involved to make reasonable efforts to see that the individual can attend here and give a submission viva voce.
1630
Mr Sterling: Mr Chairman, after our meeting this morning I phoned Mr Harnick, who had no recollection of what was alleged this morning with regard to paying for a witness coming from afar or paying for people who were necessary to send with that witness to this hearing. I understand from what Mr Harnick told me that there was an agreement that we would look at paying for people who were unable to get here, who were vulnerable people in society, because of the nature of the bill, I guess, because of some correspondence received from a group in Ottawa which thought that was a necessity.
I would ask you, Mr Chairman, to obtain approval from the committee henceforth on behalf of our caucus for any of these kinds of expenditures dealing with these bills, because we do not or I do not -- I assume Mr Wilson agrees with me -- think we can justify the expenditure of two armed guards to bring this individual here, as I understand it would be necessary. We have given, in my view, this individual an opportunity to participate in these hearings in a reasonable and logical fashion. I think we have already done enough with regard to this particular individual to allow him to participate. He has been given options by you, I understand, Mr Chairman, and he has chosen not to exercise those options.
Mr Malkowski: Mr Chair, I would like to call the question for a vote.
The Chair: Might I make one recommendation before we put the question: that you change the signature of the clerk to the signature of the committee Chair?
Mr Winninger: I see. That would be acceptable.
The Chair: Okay. All those in favour of calling the question? All those opposed? You must vote. All those in favour of calling the question? All those opposed? Further debate? Seeing no further debate, all those in favour of Mr Winninger's motion? All those opposed?
Motion negatived.
Mr Sterling: Mr Chairman, I assume in your approach you are going to indicate you are not going to be paying for these these two armed guards who are going to be necessary, because I had specifically requested that you have to come back to this committee for that kind of authorization.
Mr Winninger: Does that require another motion?
The Chair: Mr Sterling, being as the offer has already been made, maybe you would like to put forward a motion that we rescind the offer.
Mr Sterling: I move that we rescind the offer to pay for the two armed guards who I believe are necessary to bring this individual to Toronto as it is too costly to this Legislative Assembly and the taxpayers of Ontario.
The Chair: Mr Sterling moves that we rescind the offer to pay for the expenses of the two escorts. Discussion?
Mr Winninger: I would certainly oppose Mr Sterling's motion. I think that a great deal of public expense is involved in carrying on the important work of this committee, and while I do not know what it works out to on a daily basis, I imagine it is fairly significant. I think it is important to ensure that all members of the public enjoy the same rights to come before this committee that we accord sufficient moneys to enable this particular individual, who was previously scheduled to appear, to come. There is a third party presently standing in the way of his coming here, and I think payment of the expenses incurred by the health facility to bring him here would go a long way towards its cooperation.
The Chair: Further debate?
Mr Sterling: I see the need to spend taxpayers' money on things like food banks, in terms of providing adequate care for our sick and our needy, as a much, much higher priority than having a person appear here when he is given the opportunity to appear here by electronic means; he has been given the opportunity to present a written submission. If that is the NDP priority, so be it.
The Chair: Further discussion? Seeing no further discussion, all those in favour of Mr Sterling's motion? Opposed?
Motion negatived.
The Chair: Seeing no further business before this committee, this committee stands adjourned until 9:30 tomorrow morning.
The committee adjourned at 1636.