ALZHEIMER ASSOCIATION OF ONTARIO
REGIONAL GERIATRIC PROGRAM OF METROPOLITAN TORONTO
RIGHT TO LIFE ASSOCIATION OF TORONTO AND AREA
ONTARIO ASSOCIATION OF SPEECH-LANGUAGE PATHOLOGISTS AND AUDIOLOGISTS
CONTENTS
Monday 10 August 1992
Advocacy Act, 1992, and companion legislation
Alzheimer Association of Ontario
John Ellis, executive director
Peter A. Singer
Sparrow Lake Alliance
Dr Paul D. Steinhauer, chair, steering committee; senior staff psychiatrist, Hospital for Sick Children
Regional Geriatric Program of Metropolitan Toronto
Dr Michael Gordon, geriatric specialist, Baycrest Centre for Geriatric Care
Easter Seal Society
Alan Dawson, parent-to-parent link coordinator
Right to Life Association of Toronto and Area
June Scandiffio, president
Gwen Landolt, legal counsel
AIDS Action Now
Alan Cornwall, legal counsel; steering committee member
Ontario Association of Speech-Language Pathologists and Audiologists
Rick Welland, speech-language pathologist
Sheila MacDonald, speech-language pathologist
Subcommittee report
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
*Chair / Président: Cooper, Mike (Kitchener-Wilmot ND)
*Vice-Chair / Vice-Président: Morrow, Mark (Wentworth East/-Est ND)
*Akande, Zanana L. (St Andrew-St Patrick ND)
*Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
*Curling, Alvin (Scarborough North/-Nord L)
Harnick, Charles (Willowdale PC)
Mahoney, Steven W. (Mississauga West/-Ouest L)
*Malkowski, Gary (York East/-Est ND)
Runciman, Robert W. (Leeds-Grenville PC)
Wessenger, Paul (Simcoe Centre ND)
Winninger, David (London South/-Sud ND)
Substitutions / Membres remplaçants:
*Cordiano, Joseph (Lawrence L) for Mr Mahoney
*Owens, Stephen (Scarborough Centre ND) for Mr Winninger
*Sterling, Norman W. (Carleton PC) for Mr Harnick
*Sullivan, Barbara (Halton Centre L) for Mr Chiarelli
*White, Drummond (Durham Centre ND) for Mr Wessenger
*Wilson, Jim (Simcoe West/-Ouest PC) for Mr Runciman
*In attendance / présents
Also taking part / Autres participants et participantes: Auksi, Juta, senior consultant, policy development branch, Ministry of Health
Fram, Steve, counsel, policy development division, Ministry of the Attorney General
Malkowski, Gary, parliamentary assistant to the Minister of Citizenship
Sharpe, Gilbert, director, legal services branch, Ministry of Health
Valentine, Mary Beth, senior policy and program adviser, Office of Disability Issues, Ministry of Citizenship
Clerk / Greffière: Freedman, Lisa
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 1013 in committee room 1.
ADVOCACY ACT, 1992, AND COMPANION LEGISLATION / LOI DE 1992 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Consideration of Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / 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 / 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 / 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, 1992 and the Substitute Decisions Act, 1992 / Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1992 sur le consentement au traitement et de la Loi de 1992 sur la prise de décisions au nom d'autrui.
ALZHEIMER ASSOCIATION OF ONTARIO
The Chair (Mr Mike Cooper): Good morning. Just a reminder that you're allowed a half-hour for your presentation. The committee would appreciate it if you would keep your comments to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, please identify yourself for the record and then proceed.
Mr John Ellis: It's a pleasure for us to be here again to present to you. I'd like to begin by introducing Angela Morris, the past president of the Alzheimer association and the chair of the public policy committee, and Susan Kitchener, our public policy manager. My name is John Ellis. I am the executive director and I will be doing the bulk of the presentation here this morning.
You have copies of our written brief before you and I will be going through that with you, but just hitting the highlights. In the interests of time, we will only be able to cover verbally the main points in there. Of course, if any of the members present wish to meet with us afterwards, we will be more than happy to do so. We are also making the brief available in disc form for visually impaired persons upon request.
First, let me begin by giving you a little background. Current estimates put the number of people in Ontario with Alzheimer disease at 120,000, with projected increases of 50% over the next decade. Projections indicate that by the year 2000, fully half of all residents in long-term care facilities will be people with Alzheimer disease. Sheer numbers alone dictate that a major focus of the advocacy system will be people with Alzheimer's.
Alzheimer's is a condition marked by a continued, cognitive deterioration, beginning with simple forgetfulness and ending with the inability to eat, to recognize loved ones and to control one's bodily functions. The diagnosis of Alzheimer disease means the beginning of a life of progressively increased care, usually by a spouse, followed most often by institutionalization and inevitably by death. It means a life where, for the next two to 15 years, a person with Alzheimer disease must depend on a care giver who can expect a partner to change personality, to wander from home without warning and to lose all decision-making ability.
The Alzheimer Association of Ontario reiterates its support for the intent of the proposed legislation, in particular for its effort to protect the rights of vulnerable people. We reiterate our offer to the Minister of Citizenship to work with the ministry and the Advocacy Commission, once it is set up, to develop practical tools that will help to ensure that the advocacy system works to the advantage of people with Alzheimer disease.
In its previous submission to the standing committee on administration of justice, as well as in verbal representations to the Minister of Citizenship and to senior civil servants, the Alzheimer Association of Ontario has indicated not only its support for the principles behind the proposed acts, but also has expressed very serious concerns about the impact of the acts on some of the most vulnerable people of all, those with Alzheimer disease.
In particular, we took issue with the thrust of the bills in ignoring supportive families and care givers as key allies in helping to ensure that the considerations of vulnerable people themselves determine decisions about their lives.
I'd like to give you a general overview of our reaction to the amendments. First of all, I would like to commend the government in trying to reflect in its amendments the concerns we've expressed that much too formal a system had been developed to resolve problems where no conflict exists. The Alzheimer Association of Ontario appreciates the government's attempts to remove some of the barriers which we believed had the potential to put at risk vulnerable people, especially those in the mid to late stages of Alzheimer disease.
We continue, however, to have reservations about the system as proposed. We question whether sufficient financial, planning and implementation resources are in place to enable such a ground-breaking and complex system to deliver its laudable goals. To that end, we make the following general recommendations:
First, that the government table implementation plans, including time lines for all components; second, that the government table projected total annual costs as well as total startup costs; third, that the acts themselves and components of the acts be phased in, in order to (1) develop assessment standards and procedures, (2) develop training programs for advocates, assessors and rights advisers, (3) develop codes of conduct and a complaints process, and (4) develop procedures, criteria and standards.
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Turning now to the Advocacy Act, Bill 74, in particular, the intent of the act is to ensure that vulnerable people themselves are enabled to make decisions about their own lives. Decisions under which the Advocacy Act, Substitute Decisions Act and Consent to Treatment Act become operational will be taken from the perspective of vulnerable persons through the Advocacy Commission, a majority of whose members must be or have been vulnerable adults. This latter provision will guarantee, for most groups, that over some period of time a thorough comprehension of the unique consequences of their vulnerability will ensure informed decision-making by the commission. I'm not sure how much longer this is going to last: the voice, that is.
However, for the approximately 120,000 people in Ontario who have Alzheimer disease, this will not be the case. Tragically for them, the rapid deterioration caused by the disease presently precludes representatives in the mid to late stages of the disease from bringing to the commission insight into the experience of living with it. Without such representation, how will the Advocacy Commission comprehend the effects of this increasingly prevalent disease, and in particular the incapacitating effects of its mid to late stages?
We recommend therefore that, because it's critical the commission have the capacity to make decisions that fully take into account the severe functional limitations of Ontarians who are arguably the most vulnerable of all, people with degenerative neurological diseases, the Advocacy Act be amended to provide the commission with a formally mandated advisory committee.
Because there is no provision for representation of people with the experience of mid to late stage Alzheimer disease on the Advocacy Commission, we view as essential the inclusion of family members of people with Alzheimer's on the advisory committee to the commission.
Let's talk about accountability a little. There appears to be a gap in accountability and responsibility between the commission, on the one hand, and the cabinet and the Legislature, on the other hand. This leaves an unsatisfied complainant with only the courts as recourse. When the purpose of the whole system is the empowerment of vulnerable people, surely it is not the intent to force them into litigation should they disagree with a decision of the commission.
The Advocacy Act requires that the commission "establish, subject to the approval of the Minister of Citizenship, and make available to any person on request, a written review procedure for dealing with complaints from any person relating to advocates."
Clearly, the first step in laying a complaint about an advocate will be through a complaints and review procedure of the employer, the Advocacy Commission. However, there must be, beyond this, an independent appeals body before which appellants may make their cases. We urge establishment of an independent review body similar to such tribunals as the Social Assistance Review Board and the Health Services Appeal Board.
Moving on to this newly created rights adviser, the amendments to the Consent to Treatment Act introduce these rights advisers without clearly identifying their role, accountability, criteria or training. The responsibilities outlined in the legislation do not give them the full authority of an advocate, but rather that of an informed facilitator providing rights advice to the patient when required, facilitating consent to treatment and assisting patients with appeals to the Consent and Capacity Review Board. Unlike advocates, they would not do systemic advocacy.
The process under which rights advisers work must preserve the intent of the legislation in ensuring that vulnerable people have advice that gives their rights primacy, both in fact and in perception. We therefore believe that rights advisers must be both accountable to, and authorized by the Advocacy Commission. The commission must be responsible for the qualifications, standards, procedures, a complaints process, recruitment, training, reimbursement as well as management of the rights adviser program.
As we've indicated in earlier submissions, the Alzheimer association believes that the biggest challenge in making the advocacy system work to the benefit of people with the disease will be ensuring that advocates, assessors and members of the commission itself are thoroughly knowledgeable about the effects of the disease. Appropriate training will be critical.
While we understand the intent of training advocates from a consumer perspective, we would argue that the complexity and constant change in the functional limitations caused by Alzheimer disease, as well as procedures for dealing with those limitations, require quite specialized training.
We recommend therefore that the act be amended to require formal training programs for advocates, such programs to be developed with input from consumer groups, such family support groups as the Alzheimer Association of Ontario and expert advisers.
The amendments address the issue of non-instructed advocacy, and we applaud the government for clarifying in these amendments to the Advocacy Act when and how an advocate may provide advocacy services to a vulnerable person who is incapable of giving instruction. We commend in particular the provisions allowing for the advocate to take instructions from substitute decision-makers and to help family and friends in assisting the person who is incapable. In these provisions is a welcome recognition that supportive family and friends are key allies not only for incapable vulnerable persons but also for advocates.
The difficulty for the Alzheimer Association of Ontario in this area lies in how the advocate will determine (a) whether a vulnerable person is incapable of giving instruction and (b) whether there is a risk of serious harm to the health or safety of that person.
We recommend three things: first, that the commission must seek the written advice of the advisory committee to the commission in defining the procedures through which advocates determine the capability of vulnerable persons to give instruction and that such procedures be included in regulation; second, that the commission define in regulations "reasonable grounds to believe there is a risk of serious harm to the health or safety of the vulnerable person"; and third, that the regulations setting out the procedures to determine incapability of giving instruction and determination of risk to health and safety apply to subsequent sections of the act and in particular to those sections dealing with the advocates' right of entry, access to records and confidentiality.
Let's move forward to the Substitute Decisions Act. The Alzheimer Association of Ontario again commends the government on accenting the real need that exists where vulnerable people are alone or in dysfunctional relationships but assuming that the preponderance of families are actually caring and supportive. Our overriding concerns with the act are whether the office of the public guardian and trustee will have resources sufficient to meet the many key responsibilities required by the three bills and the degree to which officials within the office of the public guardian and trustee are knowledgeable about functional limitations of the progressive stages of Alzheimer disease and are sensitive to the problems this causes.
We recommend that in order to ensure effective functioning over the long term of the office of the public guardian and trustee and to facilitate supportive relationships with families and other allies of incapable vulnerable persons, a permanent liaison group be set up within the office of the PGT to work on an ongoing basis with such organizations as the Alzheimer Association of Ontario.
We appreciate the provisions of 46(a) to (c) which enable supportive family members, through an unvalidated power of attorney, to provide and/or decide on personal care and/or treatment for a vulnerable person as long as that person does not object. Both the provisions for unvalidated power of attorney and for expedited validation are good, sensible public policy. However, making that policy function well is dependent on the accuracy of the criteria and procedures in determining capacity and on the standards and knowledge of the assessors in putting those criteria and procedures into practice. It is on the latter point that we have our greatest reservations, particularly where such determination would apply to people with Alzheimer disease.
We are recommending that the Substitute Decisions Act be phased in only when, and not be promulgated until, a training program for assessors in the determination of capacity has been developed, in consultation with expert advisers, including such organizations as the Alzheimer Association of Ontario, and the number of assessors sufficient to carry out the requirements of the three acts have undergone the training program specified above.
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Regarding validation of the power of attorney for personal care, as we've indicated, we commend the government for the provisions for personal care under unvalidated power of attorney and expedited validation of power of attorney. However, families of people with Alzheimer disease will in most cases find themselves having to go through the most onerous of the power of attorney procedures: validation by the public guardian and trustee. In addition to being complex, lengthy and demanding, the requirements may also prove costly.
Consider the daunting tasks that face, for example, a 70-year-old woman who currently cares for and wishes to go on caring for her husband who has Alzheimer disease. First, she must have the assessments done by two qualified assessors to determine that her husband is indeed incapable. Next, she must file an application to have the power of attorney validated by the public guardian and trustee. She then has to prepare a guardianship plan which will accompany the application. Together with the above, she must file a form proving a qualified assessment has been done by two assessors. Then an advocate must meet alone with her husband to explain to the man with Alzheimer disease that he is the subject of an application and that he has the right to oppose it.
The woman may not be sure what training the advocate has but she will certainly hope that the advocate has a thorough knowledge of the effects of Alzheimer disease; that, for example, her husband may just continue to say yes to all questions and that he may appear to be quite capable when in fact he isn't. Next, the advocate prepares a written report for the public guardian and trustee on the results of the meeting. If there's any dispute, the courts must be involved.
This is quite a process to go through in order to go on caring for an incapable loved one and to go on making the decisions you are aware he would choose, were he capable.
We're recommending that in cases in which Alzheimer disease is determined by two assessors to be the basis for their finding of incapacity, and where the application for validation of power of attorney meets all the criteria required by the PGT, excepting that the person alleged to be incapable instructed the advocate to challenge the application, the public guardian and trustee shall validate the power of attorney.
One of the disturbing results of the Alzheimer disease process is a propensity for the Alzheimer patient to wander off without a second's notice. This poses real problems for family care givers who must ensure that the person with Alzheimer disease has someone present at all times. This is one of the reasons that long-term care facilities are often reluctant to accept placement of people with Alzheimer disease.
Subsection 65(2) of the Substitute Decisions Act stipulates that a guardian of the person cannot change an incapable person's place of residence to a more restrictive setting unless the PGT or the court, on the guardian's application, authorizes the change. If this is interpreted to include movement of, for example, a person with Alzheimer disease from one ward of a nursing home to a special Alzheimer ward which may be locked, we can foresee much exacerbation of the current difficulties in placing people with Alzheimer disease in appropriate long-term care facilities.
We're recommending that the act be amended to indicate that where Alzheimer disease is present, approved treatment plans may include provision for possible movement to a more restrictive setting, and that where approved treatment plans contain a provision for possible movement to a more restricted setting, further authorization from the PGT or the court is not required, provided that the guardian consents to the move.
Time is rushing on here so rather than go through the responses on the Consent to Treatment Act, you will see in our brief a number of important considerations there, not the least of which is the last recommendation, trying to define what the wishes of an incapable person are.
Let me only say, related to this act, that as an organization whose members have, as one of their first principles, a commitment to determining the causes of, and ultimately a treatment for, Alzheimer disease, we are particularly pleased that the government understood and in the amendments to Bill 109 heeded our pleas regarding Alzheimer research.
With that I will stop and open the floor.
Mrs Barbara Sullivan (Halton Centre): I want to thank the association for a comprehensive and I think very useful brief to the committee. Because you didn't have an opportunity to walk through the Bill 109 portions of the brief, I think that's where I'll concentrate my probably one question.
Looking at your recommendations with respect to the finding of incapacity and at your recommendations that section 10 be rewritten, my reading is that the act now requires rights advice that differs in different places when a determination of incapacity has been made. Your recommendations, it seems to me, based on the nature of the treatment and whether a person is capable with respect to that particular treatment, not based on the location, are a more appropriate route.
One of the things that strikes me, as I look at this and at your other recommendation that rights advisers be employees of the commission, is that perhaps in its rewriting of 109, it appears that the government's intent is not to have rights advisers paid by the commission and accountable to the commission, but in fact to have them accountable and paid by probably the institution in which the advice is being given, which is why there's a separation of the location. That seems to me what's happened.
Could you comment on that, and indicate why you have gone this way?
Mr Ellis: In regard to those who are delivering let's call it general advocacy services, including those that the rights advisers are designated to provide, which are of course not clearly spelled out here, it's very important that there be consistent control over their activities. Someone has to be watching them carefully to make sure the kind of advocacy that's envisaged by the legislation is being provided.
Even though, as I say, it isn't spelled out clearly what the differences between advocates and rights advisers are, even though there appears to be some indication, it seems to be logical to have the same body overseeing both groups since they are both part of the same system and providing essentially two different parts of the same service. This is why we've gone with having them accountable to the Advocacy Commission.
Mrs Sullivan: And the controlled acts are the parameter for the determination of rights advice. I think that's very useful. I like this recommendation.
Mr Norman W. Sterling (Carleton): I'd like to add my comments to Mrs Sullivan's in terms of the depth and the thought behind your brief. You've obviously done a lot of work, and I thank you for that.
I guess the bottom line in all this is, are these pieces of legislation going to be advantageous in total over the present situation or not? I get the impression that if they accepted a major number of your recommendations you may be a little bit ahead, but taking the assumption that few of your recommendations would be accepted, which is the normal procedure in legislation, are you going to be further ahead or further behind after this legislation comes forward?
Mr Ellis: Assuming "few" or "a few"?
Mr Sterling: I'd say very few. Maybe I'm prejudging the government on it, but in most cases that happens in terms of legislation. They're reluctant, at this stage, to add many more amendments.
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Mr Ellis: Well, I would like to think the government is listening.
Mr Sterling: I hope so too, but --
Mr Ellis: I hope so. I'm optimistic because there were certainly some positive responses to our first brief. The last point I raised was regarding the change on research. I think there are indications that the government has listened to our recommendations for improving the legislation up to this point. I can only base my assumption on that prerequisite; that they will continue to listen, and that there will be further changes as we have outlined here.
Mr Sterling: If there are not?
Mr Ellis: If there are not, there will remain some very important flaws in this legislation. For instance, we don't even know whether the government can afford to implement it. We haven't seen any budgets or anything like that.
Mr Jim Wilson (Simcoe West): They don't want to talk about it.
Mr Ellis: Well, one of our recommendations is that we get the --
Mr Joseph Cordiano (Lawrence): The government can't afford anything these days.
Mr Ellis: I think it's fair, before implementing any program, to ask how much it's going to cost. Until we've got some idea, I don't see that this legislation should really go forward.
I think we are afraid too that if the strength is not given to this advisory committee -- the Advocacy Commission is going to have a great deal of power, and if it doesn't understand something like Alzheimer's disease or doesn't have, in a sense, required information, required support and understanding for this kind of disease, then it will be acting without the best knowledge, and decisions will be accordingly poor. We realize that on the Advocacy Commission they want to have persons who are or have been vulnerable, but they certainly need good advice from groups like our own. That's where the advisory committee comes in. The advisory committee needs some strength. It's been improved in this recent go-round in that the minister must set up the advisory committee, but there's no assurance that it will have any teeth. Unless that's mandated and they have to file annual reports and this sort of thing, we are afraid it can't work very well.
Mr Gary Malkowski (York East): Thank you, Mr Ellis, for your presentation. It was very comprehensive and beneficial.
You said to strengthen the Advocacy Commission in terms of the Alzheimer perspective. At the moment, your group has applied to have a person on the appointments advisory committee, under paragraph 15(1)2. Do you suggest that to make the advisory committee mandatory or stronger will be better? There has been a suggestion by some other groups to have the exception removed, which will allow giving the nominations to the appointments advisory committee. What do you think about that?
Second, the Alzheimer's people who are early-diagnosed Alzheimer's have some knowledge and may be better able to develop a self-help group. Those people could then make decisions in terms of coming from a consumer's perspective. There is one member of Parliament in New Brunswick who has been diagnosed with Alzheimer's and he still functions in the Legislature, so I'm just wondering what you think about an Alzheimer's group of early-diagnosed people and coming from their perspective.
Mr Ellis: Thank you very much for that question. It gives me the opportunity to clarify that if there is a strong, mandated advisory committee, that is, an advisory committee to the commission, there will be no need to have a person with the disease on the commission itself. This is our point.
Regarding the appointments advisory committee, this is a different committee, of course, which simply appoints people to the commission. Originally we had taken issue with the fact -- "originally" meaning a couple of months ago -- that it didn't appear as if the voice of Alzheimer's was going to be heard on the commission.
At that point we were not looking at a required advisory committee. Now we're looking at a required advisory committee; this is not the appointments advisory committee but the advisory committee to the commission. With that committee strengthened, our role will be much more valuable there than trying to find someone who is going through the stages of Alzheimer's disease that will require they eventually terminate their membership on the committee.
You understand also that when a diagnosis of Alzheimer's disease is made, there is tremendous trauma for the individual and the family. Mr Malkowski, you're referring to the federal member of Parliament who has recently come forward publicly to say he has Alzheimer's disease. This man is now getting his life together. He's resigning from his position as an MP and going through what are very difficult and traumatic circumstances for his family.
We do not recommend, given the uncertain nature of the speed with which a person deteriorates and the traumatic family situations people with the diagnosis find themselves in, that they be appointed to the commission themselves.
The Chair: Thank you, Mr Malkowski. Mr Ellis, Mrs Morris and Mrs Kitchener, on behalf of this committee I would like to thank you for taking the time out this morning and giving us your presentation. Thank you.
Mr Ellis: My pleasure.
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PETER A. SINGER
The Chair: I'd like to call forward our next presenter, Dr Peter Singer. Good morning. I 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're comfortable, please identify yourself for the record and then proceed.
Dr Peter Singer: My name is Peter Singer. I'm the associate director for the Centre for Bioethics at the University of Toronto and assistant professor of medicine there. I obtained my medical degree from the University of Toronto in 1984 and my master of public health degree from Yale University in 1990. I'm a fellow of the Royal College of Physicians and Surgeons of Canada and the American College of Physicians. I practise internal medicine at the Toronto Hospital and my principal research focus is in bioethics, particularly in living wills and advanced directives.
I wish to acknowledge the assistance of Sujit Choudhry in preparing this presentation. As well, I wish to acknowledge my research support. The Centre for Bioethics is supported by a health systems-linked research unit grant from the Ontario Ministry of Health and I'm supported by a medical scholarship from the Canadian Life and Health Insurance Association and a teaching and research scholarship from the American College of Physicians. However, the views I'm about to state are my own and don't represent the position of the supporting groups, my faculty university department or centre.
I appreciate the opportunity to appear before the committee again to comment on the amendments to Bills 74, 108, 109 and 110. In this presentation I'll review the three principal recommendations related to rights advice or advocacy, emergency treatment and powers of attorney for personal care that I made when I appeared before this committee on February 10, 1992.
First, rights advice: In my previous presentation, I recommended that section 10 of Bill 109, related to rights advice, be restricted in scope and offered a justification for that in an article, appended to the presentation, that's subsequently been published. The proposed amendments are certainly a step in this direction. In addition, I recommend the following change to subsection 10(3). I think subsection 10(3) could be amended to read, "The health practitioner shall ensure that the person is advised of his or her right to request a meeting with the rights adviser and to make an application to the board under section 26."
This is similar language to subsection 10(1), and the change really would make the legislation more sensitive to the cultural context of health care. Even the most important information in health care, such as diagnosis, prognosis and proposed treatment options, is transmitted verbally between health practitioners and patients. Moreover, the lesson of informed consent is that the nature of the dialogue between health practitioners and patients is much more important than the written form itself. Requiring written notice in this section, I think, would seem overly legalistic to most patients and health practitioners and divert attention from the importance of the dialogue itself.
Even with these changes, the legislation would establish a major rights advice program. It would be important to ensure that the program met its goals and the needs of health care consumers. Therefore, the program should be evaluated in an objective manner. Thus, I suggest an additional amendment to Bill 109, which could be somewhere following section 45: "The Minister of Health shall ensure that the provision of rights advice, as required under various sections of this act, will be evaluated by a qualified research group which is at arm's length from the Advocacy Commission." The Institute for Clinical Evaluative Sciences, recently established by the Ministry of Health and the Ontario Medical Association, would be extremely well qualified to conduct such a program evaluation.
The second area I'd like to turn to is that of emergency treatment. In my previous presentation, I recommended that the definition of an emergency in section 22 of Bill 109 be changed to include not only surgical but also medical emergencies. I provided the example of thrombolytic therapy for a heart attack and suggest that, though it's an emergency, it might not have fallen under the original section 22 definition of an emergency. With the amendments and the change in language of that section from "likely" to "at risk," I think this concern has been addressed.
The third area I'd like to focus on is powers of attorney for personal care. In my previous presentation, I stressed the need for public education regarding powers of attorney for personal care. This concern has not been addressed by the amendments. A recent research study conducted by myself and Mehran Sam, a graduate student at the Centre for Bioethics, showed that of 105 outpatients attending an internal medicine clinic 16% knew about living wills, 11% knew about durable powers of attorney for health care and 4% knew about advance directives. Their knowledge of these terms is extremely limited, and would be more limited regarding the term "powers of attorney for personal care," which is even newer than these other ones.
Moreover, although none of the patients in the study had completed an advance directive or living will, the majority wanted to complete one after we explained to them what an advance directive was. Without public education, I don't believe Ontarians will be able to take advantage of the power of attorney for personal care provisions in the legislation. Therefore, I proposed the following amendment to Bill 108, which could come after section 83: "The public guardian and trustee will develop a public education program regarding powers of attorney for personal care."
In my previous presentation, I also stressed the need for a careful design of power of attorney for personal care, advance directive or living will forms. Section 47(8) of Bill 108 states, "The power of attorney may be in the prescribed form," and section 83 of Bill 108 states, "The Lieutenant Governor in Council may make regulations prescribing forms." Many different forms are available, and these should be carefully studied.
At the Centre for Bioethics, we have developed our own form, which is in compliance with the proposed legislation. This form has been developed based on my knowledge of clinical medicine, questionnaire design methods -- because after all, these really are questionnaires -- and other living will forms. It was reviewed by more than 25 physicians, nurses, lawyers and ethicists, and I might just take a moment to walk through the form, which is the attachment you have, page by page.
On the first page, on the overleaf, there are two sections. The first section, "What is a living will?" defines and describes living wills and the two types, instruction directive and proxy directive. We went with the term "living will" because, based on our survey data, this is the term most familiar to Ontarians. It says what a proxy directive and an instruction directive are.
I'll remind you that a power of attorney for personal care is at least a proxy directive -- it names whom you want making decisions for you -- and could be a combined proxy instruction directive; you may also be able to say what you want.
In the next section, "Who should complete a living will," it says that anyone over 16 should consider one, but to do it you have to consider your own death, which people don't like to do, which is why many people don't have testamentary wills. It says that if you're now healthy you may be more inclined to think about proxy directives because it's easier to figure out who you want making decisions for you than what sort of hypothetical decisions you want, but if you're sick you may want to do both because they're complementary.
Over the page we talk about how to make an instruction directive and a proxy directive. It really just talks about the sorts of situations and treatments, the sorts of proxies, you may want to consider.
The situations themselves are on the following two pages. I've listed here six health states which I think are pretty exhaustive of the health states people should be thinking about in a living will: dementia, permanent coma, temporary coma or delirium with ongoing thinking impairment, temporary coma or delirium with ongoing physical impairment, temporary coma or delirium with full recovery, temporary coma or delirium and a residual terminal illness. It's hard to think about other situations people might get into, and it describes these generic situations a little bit.
Then it goes on to talk about the principal treatments that are used in these situations, so it's really providing information to people so they can complete these forms based on some information.
The next page talks about what to do with your completed living will. One of the problems is portability: How will health providers or health practitioners know that a person has completed a living will? It basically says to send one to your proxy, your health practitioner and everyone else you can think of. I notice there are some new provisions regarding a registry in Bill 108 that may also be helpful in this regard.
"When should you update your living will?": When your health status changes and so on, and it provides some times when you might to do that.
The next section talks a bit about this legislation and the legal status of living wills in Ontario. It basically says that this living will has been written to conform with this proposed legislation, but there currently isn't any enacted legislation.
The remaining pages are the living will itself. The first page at the top the living will is identifying information and witness information. You'll see the little statement at the bottom that the witnesses have no reason to believe the person making this living will is incapable of making one, which is there to conform with this legislation.
The next page is the instruction directive with the health states listed across the top, the treatments that have been defined listed across the side, and in each case the person may choose, "Yes, I want this treatment in this health state," "No, I don't," or "I'm undecided." This is meant to go with the information I discussed before. This can be intimidating to some people, no question, but people have been able to complete other living wills of this format. As I say, the proxy directive alone without the instruction directive would also work.
The next page is a proxy directive and room for a personal statement, and then a little bit of information about the centre.
That's the living will we've developed, thinking ahead about this legislation. During the next year I expect to distribute it to patients and evaluate consumer satisfaction with the Centre for Bioethics living will.
Moreover, in connection with Manitoba's recently passed advance directive legislation, the Manitoba Law Reform Commission has asked if it can adapt this Centre for Bioethics living will for use in Manitoba. I've agreed to work with them in developing a living will for Manitoba based on the Centre for Bioethics living will, and I'd be happy to offer the same assistance to those developing power of attorney for personal care forms in Ontario.
Moreover, I recommend that if legislation is passed then the impact of living wills in Ontario should be evaluated. For instance: Are patients completing them satisfied with them; are families satisfied with the process at the time the living will springs into use; what is the impact of living wills on the utilization of health services, and so on. We're currently working on a more restricted evaluation, a similar evaluation, of a dialysis-specific living will in collaboration with the Institute for Clinical Evaluative Sciences.
In conclusion, the amendments to the proposed legislation have in part addressed the main concerns I outlined in my previous presentation before the committee. With regard to rights advice, I've offered an additional change and emphasized the need for program evaluation. With regard to emergency treatment, I think the amendments have responded completely to my concerns. With regard to advance directives, I've emphasized the need for public education and offered my assistance in the development of living will forms for Ontarians.
I'd like to thank the committee for this opportunity to appear before you a second time to comment on these bills, and I would be glad to answer any questions you may have.
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The Chair: Thank you. Questions and comments? Mrs Sullivan.
Mrs Sullivan: Thank you, Dr Singer. This is an impressive piece of work and I think it's one that Mr Sterling will probably have a lot of comment on because he has worked particularly on the living will area, as you know.
My understanding is that there are standard forms for living wills available in places like Grand and Toy and other stationery stores and that the advice that is now being provided by the Ministry of Health and the Ministry of the Attorney General is that those forms not be used and that legal counsel be sought. Could this kind of living will, in your view, be completed with the advice perhaps of a physician without the intervention of counsel?
Dr Singer: Yes, in my view it can. I think that it could be.
I'd like to stress that there are many living wills available. People class them in generations. The first generation of living wills is flawed in that, for instance, sometimes they only apply to terminal illness, whereas the legislation doesn't. The second generation of living wills, an example of which is the medical directive created at Harvard by Linda and Ezekiel Emmanuel, is more comprehensive in the medical information they provide informing people. I think this is a second-generation one.
In studies by the Emmanuels about their living will, which is probably even a little more complicated than this one, they found that people could complete them in a median of 16 minutes in consultation with their health providers. In fact, I think that people could even begin to complete these at home. The way I envision a living will program is people could have this information, take it home, review it, think of it, possibly pencil in some choices talking to their families, their potential proxies, and then have it reviewed by the health provider, who is really serving as a resource person. It's particularly important for the instruction directive component, where we can only provide very general information for healthy people really, "Here are the possibilities you could get into," but providers could modify that information to really suit the individual situations of people.
I might also say that I think the third generation of living wills will be families of living wills developed for people with particular types of illnesses. For instance, we've developed a dialysis-specific living will in which you have to list pretty well the same situations, because you don't know what health states people are going to get into, but it turns out you only have to list two treatments, namely dialysis and cardiopulmonary resuscitation, because all of the other treatments are trumped, if you will, by a decision to continue or stop the dialysis.
Similarly, if one's thinking about the HIV context, one may have the same spectrum of treatments but the situations are completely different. For instance, when we showed this living will to groups of persons with HIV, they rightfully pointed out, "What does full recovery with terminal illness mean in our context?" and many of the situations are ambiguous to persons.
So I think living wills need to be individualized to various groups and I think that will be the third generation of living wills, and we've begun to work on that.
That was a long answer to your question. The real answer is yes, I think this can be filled out by people alone, reviewed by health practitioners, and I think it would be up to people whether or not they'd need to review this with legal counsel.
Mrs Sullivan: If I have a chance for a second question, it's not on the living wills; it's on Bill 109. You've recommended that ICES or a similar body evaluate the provision of rights advice and the components of rights advice. How would you see that working?
Dr Singer: I think that rights advice, generally speaking, is a good idea. In a tailored way, as it's begun to be modified, it may be a helpful addition in the health care context.
The way I'd see it working would be like an external contract, like in the research grant model, I think. Just now, as things are contracted out to research bodies for external evaluation, I think such a program evaluation could easily be contracted out.
If I were the person performing that research -- I wouldn't want to be, but if I put myself in his shoes -- the first thing I'd do is I'd look at the articulated goals of the program and then develop instruments to evaluate the program against those goals. I think, for instance, one of the things you might measure is consumer satisfaction and reaction to the intervention of rights advisers: Do consumers who have actually gone through this regard it as a positive or negative thing? I should think that this information, objectively and fairly collected, would be a valuable addition in modifying the program to best meet the needs of Ontarians. That obviously wouldn't be the only evaluative question, but I think an important one to elicit, just as we're interested in knowing about consumer satisfaction with our living will document.
Mr Sterling: Thank you very much for coming in front of our committee again, Dr Singer, as I know you have put a lot of effort and time into the whole aspect of advance directives and living wills.
I think it should be clear to the committee, as I believe your brief is, that you're making no attempt to deal with Bill 74 to any extent but are restricting your comments to the advance directives and the living wills.
Dr Singer: Yes, I'm not attempting to deal with Bills 74 or 110. I have dealt with certain provisions of Bill 109 -- section 10 and section 22 -- and I've dealt with the "Powers of Attorney for Personal Care" part of Bill 108. That's where I've focused my attention.
Mr Sterling: I'm interested in your showing us a form of a living will, because I think it's important for us to focus on the practicality of it.
Bill 108 was improved in terms of taking away the requirement for validation of all advance directives, or "proxies" as you put it, durable powers of attorney for personal care. Under section 83, the Lieutenant Governor in Council can put forward forms. You've indicated that these things are changing as people gain experience. Do you think it's wise for them to have a standard form?
Dr Singer: Yes, I do, because the real challenge with advance directives is public education, and one of the best ways to educate the public is to make such a resource available. If you say, "We don't recommend the Grand and Toy ones," then eventually you are going to have to recommend one. However, it's only wise if that's a good form. People like the Emmanuels in Boston have spent their whole lives designing good forms.
I think that if the form is good, it is wise, and I also think it's not an issue frozen in time. I think one needs to evaluate the form in an ongoing way. For instance, we've done studies, almost like marketing surveys, if you will, where we've handed out two advance directive forms in random order to 100 patients. We have an instrument to measure their satisfaction with these forms. We ask them which one they prefer and why, and from that sort of information we can develop better forms, so I think ongoing support and form development would be helpful.
In summary, I think it is helpful to recommend one, but only if the one that is recommended is a really good one and supported by good information.
Mr Sterling: Perhaps when they develop these forms the words across the top should be that this is not an exclusive form and that it does not negate the previous efforts to either give a durable power of attorney or make a living will.
Dr Singer: Yes, I think it would be a mistake to require a particular form. One of the things we found in our studies was that when we gave two people two very different forms, their overall satisfaction was the same as a group, but when we asked them which one they preferred, half preferred one and half preferred the other, which led me to the conclusion that different people like different forms and a variety should be available.
Therefore, I think it would be good to prescribe -- let me use plain language -- to offer a form for people to use if they want, but not to require that they use that form.
Ms Zanana L. Akande (St Andrew-St Patrick): In relation to Bill 109 on rights advice, you are recommending that the advice be given similarly to advice given in all other health care situations, orally rather than in written form. I'm wondering if in fact the seriousness of the situation, the permanence, the length of time this decision may extend over, because it could be a very long time, would not warrant something different, something more significant, something in writing.
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Dr Singer: Yes. It's interesting because if you come at this from a long-term care perspective, you reach exactly that result if you come at it from the framework of guardianship and so on. Looking at it from the long-term care perspective, I'd agree with you.
However, as I come at it from the acute care perspective -- I practise internal medicine in a hospital, people come in through the emergency room, I see them for 7 or 10 days in hospital and then they get better, recover and go home -- I come to the opposite perspective and say that in those situations, information about prognosis, what's going to happen to people and what you want to do to them, is at least as important as that other information. I think people would regard it as overly legalistic to be thrusting forms in front of them.
I think it's fair to say that one of the lessons of consent forms for surgery is that sometimes the process has undercut emphasis on really the substance of the dialogue. I'm concerned that at least in the acute care situations this might be the same problem. It would be up to presumably the health practitioners to show that they had provided this advice, just as they have to show they got consent for various procedures. In that case, if I were doing it, in certain circumstances I may well use a written form because that's the best documentation I may have. But to require that in all circumstances I think might be viewed as overly legalistic.
I don't feel strongly about this. This is a change really intended just to fine-tune something that I think has already changed quite a bit in the right direction. But I did want to raise that possible modification.
Ms Akande: My concern, if I can continue it just one moment longer, was the possible legal implications with someone who is in this situation for a very long time and the implications for others if they should be challenged. If in fact at some later date this should be challenged in terms of the person's rights, it might in fact demand or be much more secure if it was a signed form showing that this advice had been given and these procedures had been appropriate.
Dr Singer: Yes. Certainly a benefit of it would be that for a post-op legal review, everything would be more neatly tied up, no question about it. However, in doing that I'm wondering how disruptive it would be to the communication act between health practitioners and providers. You see, I'm mostly recommending it not for the psychiatric or other prescribed health facilities where the risks, people say, are greater, but for the non-psychiatric or other prescribed health facilities where already there's a distinction between notification of the rights adviser. I'm just wondering whether a lower standard of proof regarding the written notice may not also be appropriate in that setting on the same principle of a graded rights response.
The thing clearly has benefits and harms and in weighing them, my overall impression is that it would probably be better to go with verbal communication and leave the onus on the health practitioners, if they so choose, as many do for procedures, to provide the written advice. Having gone through this so many times with patients, what you say to patients and how you answer their questions is so much more important than what particular forms you stick in front of them, and sometimes sticking forms in front of them focuses their attention on the form and not on what you're saying.
That's really my concern, although I agree with your opening comment that in the long-term care situation, where I have no experience -- I'm thinking of acute care -- there may be reasons to go this route with written forms.
Ms Jenny Carter (Peterborough): Thanks for all the thought you've put into this. I just have a semipersonal question. As an older person, I do take this seriously. You said that the kind of form you are suggesting to us here could be filled in by a doctor and patient quite quickly. My personal feeling is I'd want a great deal of information before I'd be able to make a decision on some of these issues.
I wondered whether an organization like your own might come up with a handbook that gave information under each of these headings as to in what circumstances it might be needed, what the possible outcomes would be and so on, to help people make decisions on this kind of issue.
Dr Singer: Let me say firstly that I think the availability of such information is essential. In fact I think the main usefulness of living will forms and the whole living will movement is not the form itself or even what people put into it, but it's, if you will, the advertisement that you should pay attention to this.
Even with very rigorous laws, like the patient self-determination provisions of the Omnibus Reconciliation Act, 1990, in the United States, very few people actually complete the form, so the information is essential. Certainly we could provide it or various other organizations could provide such information. I think it would be important to prepare such information. There's a number of information packets prepared in the US for the patient self-determination act that one could look at.
However, it's important to modify the information to the person and to be able to answer the person's questions and say specifically how this affects you. For instance, in this form I say that if you have cardiopulmonary resuscitation there's a one in five chance you'll survive to leave the hospital. That is the average statistic, one in five to one in 10, from studies.
But if I know, for instance, that you have pneumonia or lung cancer, I can say that the number is not 10 or 20 per cent, it's closer to one or two per cent. If I know that you're young and healthy, it might be closer to 30%. So yes, there's a need for written information, but there's also mostly a need for tailored discussion of people with their health practitioners.
You certainly could develop information for disease or illness groups, if you will. The closer you are to knowing what illness ails a particular person or group, the better you can be at designing forms, which is why the dialysis-specific living will or the HIV-specific living will we've developed seems more realistic to people in those situations than the general one.
As far as I can see, the greatest utility of the general one is commercial, if you will, to focus people's attention on the -- I wouldn't say the need to do this but the need to consider doing this, depending on how much you want to control things when --
Ms Carter: A healthy person probably doesn't have much basis on which to fill it out.
Dr Singer: The real question is, when you actually get in that situation, will you want something else? A healthy person is more uncertain of the answer to that question, but I think a healthy person wouldn't likely change who he wanted to make decisions for him, so I'd advise him to have a proxy directive.
In terms of an instruction directive, the choice faced by a healthy person is, fill out the instruction directive, face the prospect of your own death and take the risk that you might have changed your mind, versus don't fill one out and don't have control over what the actual decisions are. I think healthy Ontarians should be presented with that choice and permitted to make it themselves.
Mr Sterling: Could I ask just one last question? You've had quite a bit of practical experience with this. Do you under any circumstances recommend that a person make a proxy directive as well as a living will, or just choose one or the other?
Dr Singer: My recommendation is that people make both, because they're complementary. I recommend that people make both unless there's a reason not to make one or the other. A reason not to make a proxy directive is that you don't have anyone you trust, which is why, by the way, I think that adding the public guardian and trustee as sort of a guardian of last resort or a proxy of last resort is helpful. A reason not to make an instruction directive is this problem of hypothetical situations. So I recommend that people make both unless they have a reason not to make one or the other.
When I see a patient with pneumonia in the emergency room, I ask him, "Who do you want making decisions for you if things get worse?" and I ask him about the ventilator decision, which is the one he'll face, and what he'd want. The information goes well together, because it permits me to ask the proxy about the wishes. "If Uncle Henry knew then what we know now, would his choice be the same or different?" If the answer is, "Different," then -- by the way, I think that is the only reason not to follow someone's instruction directive, if you think he would have changed his mind, but that's a whole different kettle of fish. That's just the practical question I ask.
The answer to your question is, I usually recommend both unless there's a reason not to do one or the other.
The Chair: Dr Singer, on behalf of this committee, I'd like to thank you for taking the time out of your busy schedule to come and give us your presentation this morning.
Dr Singer: Thank you very much.
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SPARROW LAKE ALLIANCE
The Chair: I'd like to call forward our next presenter, from the Sparrow Lake Alliance. Just a reminder that you'll be allowed a half-hour for your presentation. We would appreciate it if you would keep your comments to about 15 minutes to allow time for questions and comments from each of the caucuses. I understand you'll be handing out your brief after your presentation. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Dr Paul Steinhauer: I'm a senior staff psychiatrist at the Hospital for Sick Children, but I'm here basically as the chair of the steering committee of the Sparrow Lake Alliance. Have you people received a previous handout from me?
The Chair: Yes. It's in the package that was handed out last week.
Dr Steinhauer: In that package there's a description of the Sparrow Lake Alliance, so I want to take a moment, in case any of you haven't read that, to tell you a little bit about the alliance before I talk to the specific act.
The alliance is a three-year-old coalition consisting of members of 11 professions that work with children. We have psychiatrists, clinical psychologists, social workers, child care workers, day care workers, teachers, members of boards of education, judges, lawyers, nurses and paediatricians. All of us are getting together from our various service sectors. We have representatives of the health care sector, the education sector, the children's mental health sector, the child welfare sector and the family court system. We're working together in an attempt to promote health, mental health and the developmental prospects of all the children in Ontario.
We try to do this in a number of ways. We have a major emphasis on prevention and developmental supports. We're working towards creating families, schools and communities in which children can flourish. We're working with ourselves and with our colleagues in other service sectors to develop more responsive, more humane and more selective and effective ways of using services for children so that not so many children and families fall between the schools of the different service systems.
Third, we're trying to work to bridge the gap that separates one profession and one service sector and one ministry from another. We're working to establish a partnership between those of us who are actually working with children and the ministries that are planning and funding services for children so that together we can avoid the sorts of adversarial relationships that were so typical in the past, so that working together, we can serve children better.
Finally, we're about to begin a major education campaign, the goal of which is to increase community awareness of the fact that if we continue to let children down today, our society is going to suffer tomorrow in terms of increasing rates of vandalism and violence and increasing rates of illiteracy and illegitimate pregnancy. We're going to have fewer skilled employees, which is going to lead to less productivity, increased unemployment and increased costs of welfare, unemployment, mental health treatment and imprisonment.
So this is who I'm representing, this group that has come together, putting aside their own particular interests to try to make things better for children. Last week, I believe on August 6, the Globe and Mail reported on this committee's response to Dr Alan Goldbloom, who presented to it the second submission of the medical advisory committee of the Hospital for Sick Children. According to the Globe and Mail, following that presentation, the parliamentary assistant to the Minister of Health had responded that a majority of the presentations received last winter had indicated that most children between the ages of 12 and 16 are capable of deciding whether or not they should receive health care.
According to our research, this committee had received approximately 200 submissions regarding this legislation prior to May. Members of the alliance have reviewed these submissions and found that only five of them dealt directly with the issue of children's capacity. Only four addressed the issue of age of consent.
Three of these -- the first a submission from the medical advisory committee of the Hospital for Sick Children, a second from the division of adolescent medicine of the same hospital and one from Justice for Children and Youth -- were clearly concerned that (1) if adolescents under 16 could only be treated given the awareness and permission of their parents, or (2) if they knew that before they could be treated they would first have to go through an adversarial procedure to establish their capacity for consent, or (3) if health professionals were, or thought they were, at risk if they treated adolescents under the age of 16 without parental consent, then in all three of these cases, many children would be more likely to go without needed health care.
Thus all three of those briefs are concerned about 12- to 16-year-olds being deprived of necessary treatment if they were forced by the presumption of incompetence, prior to age 16, to obtain parental consent as a prerequisite for health care.
To improve such children's access to treatment, these briefs suggested lowering the age of presumed competence from 16 to 12, thus allowing the children to consent independently of their parents. None of these three briefs considered, let alone dealt with, the potential hazards to significant numbers of adolescents less than 16 who, if presumed competent, would almost certainly use their newly granted capacity to avoid necessary treatment.
To gather from this response that a majority of presentations indicated that most children between the ages of 12 and 16 are capable is surely misleading. The reason that this committee received no opposition last winter to the proposal to remove the age 16 presumption is because it was only in May that the tabling of new amendments made competency below 16 an issue.
Prior to these new amendments, most service providers and most others concerned for children had no reason to address this committee. Only in May, after the presumption of responsibility was lowered to age 12, did you begin to hear from us, and it wasn't just doctors who were concerned; so were children's aid societies, so were school officials, so were dentists, and so was the Ontario Federation of Labour, surely an organization not known for its love of organized medicine.
Representatives of all of these groups have appeared before or written to this committee expressing their concern about the potential harm that will be done primarily and directly to children, but also indirectly through undermining their parents, if children below age 16 are free to refuse health care that has been prescribed by a responsible health care provider and that is considered in their best interests by their parents.
On page 3 of my previous brief to this committee by the Sparrow Lake Alliance, dated June 1992, I listed a number of conditions under which children who are otherwise mentally competent would, given the choice, frequently make irresponsible decisions regarding their own health care. Let me suggest two more, this time possibly a bit closer to home.
Suppose your own 13-year-old had a severe toothache or rejected medication for acute tonsillitis or a tetanus toxoid booster after having stepped on a rusty nail and refused medical treatment because of the anxiety and/or pain that would be involved. Would that be a responsible decision? Of course not. To give your child the health care he needed, how would you feel as a parent about having to go through a judicial hearing to officially label him incompetent just to be able to provide the care he needs?
Or suppose your otherwise well 15-year-old for no apparent reason suddenly panicked at the mere thought of attending school so that you couldn't get her out of the house in the morning, and that when you, as a conscientious parent, decided that the situation required professional help, she refused it. Would it make sense for this law to take away from you the authority you would need to ensure that she got the care she needed?
What makes this whole thing so difficult, of course, is that not all children mature at the same rate, and not all parents, especially those in conflict with their children, can always be counted upon to see their children's needs clearly and to put them first. Also, not all decisions are equal or responded to in the same way.
As a result of these factors, the Weisstub inquiry quite correctly pointed out that selecting any set age as the age of competence is somewhat arbitrary. Yet those who argued for lowering the age of competence quote Piaget, Weithorn, Grodin and Alpert and others to demonstrate that 13- and 14-year-olds are capable of reasoning about the same level as adults. But as I've tried to demonstrate through my examples, there is more to decision-making than the capacity to think rationally. We agree with Weisstub that competence is a complex construct requiring not just rationality, but the ability to simultaneously deal with strong emotional states, maturity levels and social pressures, while striving to remain rational and objective.
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Also, it's well known that early adolescence is a developmental stage characterized by frequent emotional storms that often overwhelm the capacity for reason. The Group for the Advancement of Psychiatry in 1989 pointed out that the universal developmental task of moving towards autonomy leaves many adolescents in frequent conflict with authority and unduly susceptible to the influences of peer pressure.
As Hudson, Hornick and Borrows stated, "Many young people requiring counselling are unable to provide consent because of the very nature of their problems." For example, the Young Offenders Act gives children of 12 the decision as to whether or not to accept a judicial proposal for a therapeutic disposition. Such children almost never choose therapy, and since the judge cannot overrule them, they almost always go untreated. This is equally likely to be so for many children who need treatment but cannot recognize or act upon that need. Many of them will do without the treatment they need if the age 16 presumption is removed.
We understand and support the intention behind these proposed amendments. Children below age 16 who would likely be deferred from treatment if parental knowledge and consent were a prerequisite, should certainly be able to receive the care they need. In such cases, rigid insistence on parental consent would be an obstacle, not a protection, for them. But in your attempt to help them, please do not make the error of moving to an age 12 presumption, thereby predictably depriving of health care others whose condition will not allow them to consent to the care and treatment they need.
There is no inconsistency in our position. We support lowering the age 16 presumption when not doing so would deprive specific children of necessary treatment, but not doing so universally, thereby undermining parents' attempts to advocate for those of their children unable to advocate for themselves.
That is my formal presentation. I would be glad to speak to any questions.
Mrs Sullivan: As you know, we as a committee have been battling with this issue in the first round of hearings and, of course, now we're faced with a very different view, I think, of the problems than we heard in the first round of hearings. I suppose that coming to a compromise in terms of maturity versus competence and the age 16 presumption is something the government is going to have to put its mind to very carefully.
Is it your view that if the government moved back to the original form of presumed capacity at 16, as it was presented in the original version of the act, young people who were subjected to that -- say at 14 -- could in fact receive advice and counselling on sexually transmitted diseases, on other sexually related problems and in fact could receive perhaps even therapeutic abortions?
Dr Steinhauer: As I understand it, the situation exists under the Child and Family Services Act now for them to receive counselling at the age of 12 without parental consent, the only onus being on the counsellor, at the soonest point that seems appropriate, to raise with the child the possibility of involving the family in some way in the discussion, and that might and it might not be appropriate at other times.
Doctors and other health care providers are often prepared to do what the child needs, basing this on the common law that if they basically do a reasonable assessment of the maturity level of the individual youngster, they are not going to get into too much trouble.
The problem is that you have many health care providers who are frightened at the prospect that if in a particular case they were to demand consent from the parent, they would lose the confidence of the child and they would lose the opportunity to work with that child. Then what happens is there are many doctors who will back off. They don't recognize the protections that are there for them in the common law.
My feeling is that if the health care professionals were made more aware of the fact that there is a certain leeway allowed them in the common law, it would be quite possible to provide the release so that health care providers could dispense with parental notification and consent if they felt that would be against the best interests of the child involved, but to rely upon it in situations where it was needed to strengthen the parents in a family that hasn't broken down and where the parents are advocating for the best interests of the child.
Mr Jim Wilson: To follow up on that, Dr Steinhauer, the model that you're suggesting would involve a release and a judgement call by the physician.
Dr Steinhauer: The release and judgement call by physicians and health care personnel is going on all the time as it is. If this were made explicit, it might help a certain number of health care providers feel a courage they should have possibly, but that so far they lack to rebut that presumption of incompetence when it is in the interests of the child they are trying to serve to do so.
Mr Sterling: I'm getting a little bit confused with regard to the argument we're hearing now in terms of people who are objecting to the taking out of the presumption of incompetence under the age of 16. I'm not sure where the demarcation is, whether it's 16 or 15, but let's say that's what it is. What I don't understand, from the witnesses and yourself, is under the old rule, when there was a presumption of incompetence, was there a balance in other parts of the legislation, the advocates etc, which made the health care providers comfortable, because the presumption was there?
Basically, as I understand the legislation now, by taking out that section altogether, section 8 of Bill 109, we're thrown back on the common law. Therefore, I hear people coming forward, like yourself and children's aid societies, that I empathize with. Are you and they telling me that you're not satisfied with the status quo, the common law?
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Dr Steinhauer: I think that people like myself, people in the child welfare field and people in the children's mental health field, were satisfied basically with the status quo. However, they were recognizing that some of our colleagues in paediatrics and people who were doing more health care counselling, particularly in the sexual abuse area, in the area of sexual counselling, in the area of sexual disease, in the area of planned pregnancy, were feeling they didn't have the freedom to get involved with youngsters in the way they needed to be able to get involved with them to help them, because they felt they needed parental consent first.
Now, of course, there have been some paediatricians and family physicians who have been doing this all along. However, I think the primary concern of people -- for example, the two briefs from the Hospital for Sick Children last winter -- was that they, as paediatricians, were having difficulty at times involving teenagers because either they felt the teenagers didn't feel they could come to them without having to get parental consent or they had had experiences in the past with doctors who had felt that they couldn't counsel them without their parents' consent.
I think they were pushing for something that they felt would help that particular group of children, and I think that while coming up with these amendments maybe solves that problem, the legislation promises a much greater problem with another group of children.
Mr Sterling: But as to that other group of children and the health care providers and the social workers who were dealing with the other people who are not as satisfied now under the amendments, am I reading them correctly as saying, "We saw Bill 109, as it was originally presented, as giving us more control over those decisions for the young person from 12 to 16 and we like that because we feel we can treat these people to their best interests"? Now that it's backed off to 12, they're coming to us and saying, "We don't like the fact that we are not going to have more power."
As I read Bill 109 now, as it was originally presented it gave the CAS more power. It gave health care providers more power than they ever had to deal with that age group and that's why they liked it. Now we're saying we want to put it back to where it was and we're hearing them complain.
Dr Steinhauer: My concern is that the proposed amendment takes power away not from health care providers, but I think from parents. That is what my primary concern is, that the parent should be able to be the parent as long as the parent is able to meet the needs of the child.
Mr Sterling: I understand that, but is there any difference for a parent today without Bill 109 as opposed to the introduction --
Dr Steinhauer: I think so, very definitely. Let's take the two examples I gave you today. Suppose your child had been the one who had stepped on the rusty nail or had the tonsillitis and suppose you, as a parent, decided that child needed treatment and suppose the child said, "No, absolutely not, I refuse." Then, according to the amendments in Bill 109, one would have to go through a judicial procedure in order to demonstrate that the child was incompetent and to get the permission to give that child the care the child needed. To me, that is going to be undermining very many families.
Mr Sterling: Under the present law?
Dr Steinhauer: Under the present law, that does not become an issue.
Mr Sterling: How do you get the child to take the needle?
Dr Steinhauer: I think under the present law the parental authority is not undermined. There may have to be an issue within the family but the family can usually work that out and if the family gets into too much trouble it can often get help from a family doctor, from other resources outside the family in resolving it.
I'm not aware that there is a problem in that sort of issue with the current legislation, but there would be. In many cases where the parents are dealing with the irrationality in a younger teenager, where the irrationality is a function of the child's developmental stage or strong moods temporarily overwhelming the child's judgement, in situations like that, I think the present legislation gives the parents time, but if the legislation comes down and says, "If a kid says no, then no is no," to me, that is an intrusion by the state into the affairs of the family and undermines the position of parents at a time when I think enough parents are enough under siege anyway. I don't think they need this kind of intrusion.
I think there are times in the life of normal teenagers, particularly younger teenagers, even leaving out the question of health care, where the younger teenager often requires the stability of a parent to help that child keep the various swings and keep a certain amount of perspective. I think you undermine that with this amendment, by dropping the age of presumed competence to 12.
Mr Drummond White (Durham Centre): I want to congratulate you on your presentation. You've put some very difficult issues, and all the vicissitudes that go into treatment, very well. As a parent of adolescents and as a family therapist myself, I have a couple of questions. I tend to agree with you about the presumption of competence with adolescents not always being verified or verifiable. It's easy to see, theoretically. With my kids, I'm not always sure it's there.
There were a couple of things I wanted to ask you about here. I've worked as a family therapist and with adolescents for many years. After the Child and Family Services Act, as a professional social worker my practice was impacted because at that point I was allowed to work with youngsters between the ages of 12 and 16 without parental consent.
What struck me was that when they have the option, the opportunity of seeking treatment, these youngsters do, and as you're saying, many people in your hospital also thought that would be an important option for them. The presumption that there might be refusal is realistic for some kids, as you mentioned, but I think most would be empowered, enabled, most would have the opportunity they previously had been denied. That's the one aspect, and I think you picked up on it yourself.
But the other concern I had was that with the law as it stands now, if someone is compelled to go into treatment, my experience is that those kids don't respond really well. At least, my own treatment with youngsters was based upon a contract, a consensual arrangement. I'm wondering if you could comment with regard to those youngsters.
Dr Steinhauer: I'm glad you raised that. I have had a somewhat different experience. I think it's true that wherever possible it makes sense for any therapist to try to get an understanding consent on the part of all people involved, but I have seen, and colleagues have reported to me -- actually, in that first brief I sent to you I reported in some detail a situation of a young boy who was brought to me under protest; the only way that kid and some other young adolescents have to prove that they are individuals and prove that everything is fine, that there are no problems, is to protest like mad, but they work from the moment they get in the door.
I've heard colleagues who have worked in inpatient units talk about the same kid who was protesting like mad about having to come in three or four weeks later telling other people, "This place is really good, they really help you here, they really understand things." I think there are some kids, particularly at this developmental stage, who need to protest getting into treatment but who, once there, are able to form an alliance so that you can work with them.
At the same time, I admit to you, there are some kids where that doesn't happen. If you don't manage to form that alliance, then you may get nowhere with that child and you may end up towards stopping. I don't know about you, but I can never predict in advance which ones I may be able to seduce into an alliance so that we can then work together towards the solution of their problems. If I had to write off anyone who said right at the very beginning, "No, I'm not going to come," I think I would have lost a lot of kids whom I've been able to help significantly.
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The Chair: Mr Malkowski, one final question.
Mr Malkowski: Thank you for your presentation. I want to clarify about the Ministry of Health amendments, so I will ask Juta to clarify.
Ms Juta Auksi: I want to clarify a point that I think Mr Sterling was raising with you a little earlier. The difference in the bill as amended, compared to the bill before, is maybe not quite as dramatic as perhaps you are suggesting.
The amendments to the bill do not set the age of presumed capacity at age 12. The reference to age 12 has nothing to do with the finding of incapacity or capacity per se, but rather at what point a person would be entitled to certain information about their rights should they be found incapable by the practitioner.
The removal of section 8 from the bill as it was has removed any presumption of capacity or incapacity, so it's entirely up to the health practitioner to determine whether or not a person is capable of giving a consent on his or her own behalf. In that regard, I think it's really not that different from the common law as it is now, in that parents under the common law would not have the right to impose their treatment decision on a young person who is mentally capable of making that treatment decision for himself or herself. That parental authority doesn't really extend to that extent under common law now, nor would it under the proposed bill.
What I'd also say is that under the earlier version of the bill, with a presumption of incapacity under 16, that presumption was still rebuttable. So even under the earlier version, if a 13-year-old came to a practitioner and there was a presumption of incapacity but the practitioner found him or her to be capable, it didn't entitle the practitioner to rely on the parents' consent over the objections of the young person.
Dr Steinhauer: I wonder if I understand the law incorrectly. It was my understanding that parents did have the right to insist on health care provided it was in the best interests of the child; if you were at a point where the parents' interests diverged from those of the child, under the common law they did not have the right to insist upon that child's involvement in treatment. Am I incorrect there?
Ms Auksi: I'm not a lawyer, but the lawyers tell me that's incorrect.
Dr Steinhauer: I'm not a lawyer either. My authority for that is my reading of Weisstub, and I thought that was what Weisstub was saying.
Ms Auksi: I don't think so. Actually, I was going to mention also that in Professor Weisstub's book on mental competency, of course his recommendation was that there be a presumption of capacity at 14, based on empirical evidence he had looked into saying that most children would actually have acquired the necessary mental capacity at that age, and in fact a great many would have by the age of 12. There is some idea that people mature at different rates.
Dr Steinhauer: Yes, I'm aware of Professor Weisstub's coming to that position. I think it came as a bit of a deus ex machina, and I tried to review this in my presentation this morning. While he talked a great deal in his book about the fact that there are a number of people who say that at the age of 14 or 15 children cognitively are capable of rational thought at a level fairly similar to that of adults, I think the other issues I tried to bring in -- the issues of the conflicts specific to early adolescence, the issues of the mood swings that are fairly typical of early adolescence and the susceptibility to social pressures -- very much tend to impact on the capacity to be rational, especially in times of crises, which is why I found his suddenly deciding on age 14, as if the only thing involved were the question of the capacity for rational thought, to be rather surprising.
Ms Auksi: I think it's important too to remember that in the definition of "capacity" in the bill, which again reflects the common law concepts, it's not only understanding the relative information and the consequences, but appreciating the consequences. In the Consent to Treatment Act, it is a decision-by-decision issue so that if, for example, an individual who may be generally considered capable of making a wide range of decisions made a particular decision because of his distraught condition of mind or the trauma of something that's happened, perhaps lack of maturity would be a consideration there, because children do not develop in the same ways. I think some of this would really come down to an implementation issue of how the assessment of a young person is conducted. Certainly this issue has been brought to our attention. Of course, it happens all the time out there that practitioners encounter young people coming to them for health services without their parents, and practitioners are having to decide whether they are mentally capable enough. In part, that means are they mature enough to appreciate the consequences of what this treatment would do for them? The bill tries to codify that.
Mr Sterling: Mr Chairman, I really believe that in order for the committee to reach a conclusion with regard to section 8, which has been removed, it's very important for me as a member of this committee to understand what the existing common law is with regard to treatment of immature adolescents. I was wondering whether you might be able to obtain a legal opinion. I've heard Dr Steinhauer give his interpretation of what he understands the common law to be. I've heard the health care policy person talk about a difference of opinion as to what the common-law status of an adolescent is. From my point of view, I would like to fully understand the control of a parent over an immature child in terms of obtaining treatment.
The Chair: Would you like that written or oral?
Mr Sterling: I would like it written, and I would like to know who it's from. We might want to obtain outside counsel after I see the inside opinion.
The Chair: Okay. I'm sure that can be arranged.
Mrs Sullivan: I concur 100% with Mr Sterling on this point. I think it would be useful to have both internal -- indeed, my recommendation would be external counsel on this matter. As you know, counsel have appeared before the committee who specialize in health care law and who could be engaged by the committee. I believe there's probably adequate funding in our committee budget to do that. Certainly we hope to hear from Mr Sharpe during the course of clause-by-clause and perhaps even in advance of that. We've certainly been around the garden gate on this issue and I think we have to have a lot more information than we have.
The Chair: We'll have to call for a subcommittee meeting on that as the Board of Internal Economy hasn't approved the budget for this committee. Perhaps we could set up a subcommittee meeting to discuss this.
Dr Steinhauer, on behalf of this committee, I'd like to thank you for taking the time out to give us your presentation this morning. This committee stands recessed until 2 pm this afternoon.
The committee recessed at 1159.
AFTERNOON SITTING
The committee resumed at 1409.
The Chair: I call this committee back to order. Just a few announcements: We'll deal with the subcommittee report at the end of this afternoon's proceedings. A few changes in the schedule: First of all, we'll be going with the Regional Geriatric Program of Metropolitan Toronto, then we'll go to the Easter Seal Society and then, because of a conflict in some correspondence that went out, we'll have the Right to Life Association of Toronto and Area after that, which we had scheduled for Thursday, I believe. They will be giving their presentation today.
REGIONAL GERIATRIC PROGRAM OF METROPOLITAN TORONTO
The Chair: I'd like to call forward our first presenters, from the Regional Geriatric Program of Metropolitan Toronto. Good afternoon.
Dr Michael Gordon: Thank you very much for allowing the modest switch in program.
The Chair: Just a moment, please. This is just a reminder that you'll be allowed half an hour for your presentation. The committee would appreciate it if you would keep your remarks to just 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 Gordon: I am Dr Michael Gordon. I'm a geriatric specialist at the Baycrest Centre for Geriatric Care and I'm here on behalf of the Regional Geriatric Program of Metropolitan Toronto.
If you haven't received a copy of my brief, it will be copied and submitted to you later. It's entitled Advocacy Legislation -- An Expensive Experiment. I presented at the earlier hearings about the legislation, and this is the follow-up after the amendments.
The hearings were completed in 1992, and as an outcome of the hearings a number of amendments were derived from the input of the various parties who submitted briefs. Of course, the plan now is to review the amendments and have hearings again.
I was concerned about the effect of the previous draft of the law on persons suffering from cognitive impairment. As I review the amendments to Bill 74, I note that many of what I believed at that time to be the most onerous clauses have been removed or modified. For that, I am grateful. Therefore, as it stands now, I believe the legislation is no longer one that will actively impede the care of persons with cognitive impairment, nor will it actively undermine the relationships between families and health care providers, which was the major concern of the previously unamended legislation.
However, for me and the people I represent, the issue remains, what positive benefits does this legislation and its impact on substitute decision-making and consent to treatment bills offer to persons with dementia and their families? Rather than being onerous, the legislation is merely a cumbersome and unnecessary layer of administration that will add little to the care given to older individuals with cognitive decline and do little to assist families in fulfilling their care-giving role. We should therefore seriously question the basis for the legislation altogether. I'm speaking specifically about Bill 74 at present.
The question I'm asking is, who needs help? That there are persons with physical and psychiatric disabilities who could benefit from advocacy is clear. Whether the nature of need and the context of assistance pertains to persons with dementia is not as clear. Whether a new administrative structure to assure that needs are recognized and addressed deserves to be questioned.
There is no question that there are many older individuals in Ontario who suffer from cognitive impairment. A number do not have dedicated care givers or have care givers who are not committed to their wellbeing. They could potentially benefit from an objective and responsible advocate, not a rights adviser. The role of an advocate in this circumstance would be to ensure that proper actions are being taken to ensure that person's wellbeing and, if necessary, take on the role of surrogate decision-maker if there is no one suitable to carry out this role.
The concept of a rights adviser to a person with dementia has little meaning as conceptualization and reason become compromised. What I am saying is that to explain to somebody what his rights are when he has difficulty understanding basic communication is really, I think, not a particularly useful endeavour.
For many individuals with dementia, there are family members who are dedicated and committed to their wellbeing. What is lacking in the structure of care is not the protection of rights but the facilitation of access to care and options of strategies and treatments that will assist the family member in assuming care and fulfilling his or her designated role. There are many barriers to care and inadequacies in the present system that will not be addressed by ensuring that the rights of the individual are respected. Rather the legislation may misdirect the focus to rights protection and away from adequacy of care alternatives and options for the person and his family.
The creation of a new bureaucratic structure to solve the problems of some people who might be truly vulnerable and at risk appears to be an excessive and unwanted use of valuable and limited resources. With the creation of this new administrative structure, one can anticipate further developments that may be self-sustaining and contribute little to the real care problems that are central to the issue and of greatest concern to family care givers.
Basis for programmatic development: Within the practice of medicine, it is now acceptable to most government agencies responsible for funding that before funding is approved the basis for a programmatic initiative must be documented. The criteria for accepting a program as worthy of development include a definition of the problem; its true extent; the impact and/or result of the present situation; the proposed solution; the rationale and expected outcome of the solution, and the cost and relative benefit for the costs as well as some measure of utility as compared to other uses of the same resources. From our understanding of the data that have been presented so far, no such proposal has come forth to support the presently conceived Bill 74.
The proposed advocacy legislation and the development of the Advocacy Commission is based on a number of assumptions. The data that have been made available by the government do not appear to adequately support the premise on which the program is founded. The definition of a number of so-called "vulnerable persons" has never been clarified. It appears to be based on the potential number of vulnerable persons, depending on the definition. If for the cognitively impaired "vulnerable" implies having the diagnosis of a dementing condition, the number will of course be high. If "vulnerable" is characterized by cognitively impaired individuals who do not have a dedicated and committed care giver, the number will clearly be much smaller.
Depending on the true number of vulnerable elders suffering from cognitive decline, the impact on the proposed legislation may affect many or relatively few people. Although other categories of individuals with psychiatric and physical disabilities may benefit somewhat from the proposed legislation, it is the elderly and others with cognitive impairment and their families about whom I am especially concerned. For them, the advocacy legislation offers very little of substance and will merely add another layer of administration and costly bureaucracy to a system that already has difficulty meeting the substantive needs of this ever-growing segment of the population.
Testing the premise: Before a commitment is made to make available funds to fulfil the mandate of the advocacy legislation, I propose that a proper study be performed which, first of all, adequately and thoroughly documents the true numbers of really vulnerable individuals. Moreover, I suggest that a pilot project be performed at a number of designated sites to observe and critically analyse the impact and relative benefits and drawbacks of such an advocacy system on the care-giving activities as they affect individuals with cognitive impairment as the cause of their being defined as vulnerable. I predict that for those whose major problem is cognitive impairment, the advocacy legislation will benefit very few and thus will be a costly add-on to the health care system.
If indeed the statistics and the outcomes of pilot projects indicate that there is a true need and that the benefits are tangible, measurable and cost-effective, the program should be implemented fully, as would any other similar program that affects the health and wellbeing of individuals. If the studies demonstrate that there are parts of the program that are redundant or irrelevant, they should not be implemented or funded.
Conclusions: There is no question that the intent of the advocacy legislation is beneficent. This, however, should not be considered sufficient to allow the government to embark on a program of indeterminate benefit. No new major health care initiative would be allowed to be funded based on good intentions. My concern is that intentions may have little to do with outcomes, as has often been shown in other areas of health practice and policy. The bills dealing with substitute decision-making and consent to treatment deal substantively with important issues that are known to be a problem in health care practice and supportive of many of the needs identified by health care professionals and families. It is the role of the advocates or rights advisers that appears to be an unnecessary addition to the proposed changes.
I recommend that Bills 108 and 109 be allowed to proceed with appropriate modifications without being dependent on Bill 74. For the latter, a study should be undertaken to document the extent of the true, so-called vulnerable population. If it is agreed that the population at risk merits such legislation, a pilot project should be implemented to evaluate whether the proposed structure will answer the needs of the identified group and whether or not a simpler and more cost-effective system might not be built upon the already existing system. The latter might include an augmentation of the mandate of the office of the public guardian, the coroner's office, the legal aid system. With a modest increase in funding these agencies might be able to fulfil the identified needs of vulnerable persons and their families.
At a time of scarce financial and human resources, we should understand the reasons and implication for policies that affect the health care of our population, and we should carefully measure their impact. The advocacy legislation has not been demonstrated to be necessary in order for those in Ontario who need assistance and dedication to receive it with dignity and humanity.
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Mr Jim Wilson: Thank you, Dr Gordon, for your comments. Many of the arguments in terms of cost-benefit analysis and such that you put forward are reflected, I think, in the earlier transcripts of these hearings, where my party and the Liberals often asked those questions of the government. But given that we've had a set of amendments come in and given the government's intention to proceed, perhaps you could tell us, if the legislation is to proceed with the amendments as you now understand them, what effect that would have in your day-to-day life as a physician, I gather, at Baycrest.
Dr Gordon: I think it will still add, even though not as onerously as in the past fortunately, a layer of interaction that I don't believe is necessary, which has to be translated into somebody's time, effort and cost, no matter how you put it together. If you have to invoke another layer of involvement that costs something -- be it time, money, however you want to translate it -- I don't believe it will add anything to the needs of the person and the family.
The vast majority of people we see in our practice -- and one might say I have a skewed population, but in fact I've looked into it in terms of geriatricians and neurologists who deal with dementia -- do have people who are connected to them who want to care for them. What they're looking for is systems of care giving. The rights issue is really a relatively minor issue unless you're assuming that this group of people really doesn't care and somehow has some kind of alternative reason for being involved, which I think would speak very poorly of our society, because then you'd have to suspect everybody who's a care giver of somehow having an ulterior motive.
What they need is a way of facilitating the delivery of services, because most of them are struggling with the delivery of services. To bring in another layer that somehow will inform people that they have the right to appeal and can appeal really will add nothing to their daily activities and, I believe, will just add, because to have the structure, you're building an infrastructure that requires resources. I don't think it's required, because we do have a system already in place that would allow for that.
Mr Stephen Owens (Scarborough Centre): Thank you, Dr Gordon. I want to suggest that you may be swimming upstream against a river of precedent in terms of your views that the advocacy legislation is not needed. As a matter of fact, this morning I was dealing with a situation in my own riding where if this legislation was in place, it would certainly have prevented a lot of pain that a particular family has been going through with respect to the treatment a constituent is receiving in a nursing home.
I think that I am at variance with your opinion that rights advice adds only another layer of bureaucracy to the process. I think that in terms of some of the more spectacular results of individuals who had not been advised of their rights nor had that advice made to them that we've seen in the newspapers over the past year or so, had legislation of this type been in place, perhaps we might have avoided some of the cases that we've seen. We don't live in a perfect world and not all nursing homes, not all geriatric centres, are perfect. I would suggest that from time to time Baycrest may even have some difficulties.
Dr Gordon: God forbid.
Mr Owens: God forbid. But I think that in terms of us living in the real world, it's legislation like this that is needed to protect people who are vulnerable. In terms of being able to have personnel available to explain rights to individuals, it certainly doesn't add just another layer of bureaucracy; I think it's an integral part of the care an individual receives. Having the family involved in that advice is important as well.
Dr Gordon: I have no problem with the issue of advocating; quite the opposite. I've been a very strong proponent of advocacy, for people taking the position of protecting people and coming to their need. What I'm concerned about is that I think in order to accomplish that goal one doesn't have to build a new infrastructure. We have systems that would allow for that if they were enhanced, without having to create a new infrastructure.
I believe one could come to the aid, be it of an individual in a long-term care facility or in his or her home, which is certainly justified -- I have no issue with that at all -- without having to create what I look at as sort of an almost new industry. I believe there are people who are willing, able and desirous to come to the aid, and there are systems in place that could be augmented to do so with not only less expense but with a simpler method than what is being proposed in this legislation.
Mr Owens: For instance, whether it's clinic lawyers or private bar lawyers who accept legal aid certificates, it's my view that the legal aid system is struggling now to fill its own mandate, and to add yet another layer of duty to legal clinics, for instance, would be onerous. Having a system of advocacy that's separate and apart from the whims of government I think is important as well.
Dr Gordon: Let's put the legal aid aside. That's a special kind of intervention that's very legalistic. We have an office of the official guardian. We have a coroner's system that has long-term and geriatric --
Mr Owens: By the time it reaches the coroner's system it's too late.
Dr Gordon: That's because the mandate of it has been to deal with it after the fact. The mandate has changed and the long-term and geriatric committee is dealing with systematic issues. What I'm saying is that if you talk about the cost of building a new system compared to the cost of augmenting already existing systems, I suggest you could get the same thing accomplished more simply for less money. Obviously, if you gave legal aid more to do now with the same budget, it would die.
I don't know what the proposed cost has been -- I haven't been able to get a good figure -- but let's throw out $30 million, $40 million, $50 million. What could you get for half that money by augmenting what exists?
There was a recent publication from British Columbia that looked at that process as a way of solving -- nobody's quibbling with the need for defined advocates for certain situations. I'd be the last person to quibble with that. I've spent 18 years doing it, not necessarily in my medically professional state but in my commitment to the care of the elderly. Nobody quibbles with that. It's a matter of how you accomplish that role in the most efficient, effective and reasonable cost-effective manner.
Nobody's quibbling with the need for advocates or the need to make sure that people who are either being poorly treated or are at risk of being poorly treated are looked after. That's not an issue.
The Chair: A brief question, Mrs Carter.
Ms Carter: I really have to agree with my colleague on this. I think you're shifting the grounds on which you're opposing this. You're saying it's not needed for people with dementia because they presumably don't have any opinions, and I would disagree with you on that. I think we do have the non-instructed advocacy, which has been clarified in the amended version of the bill, that can pick up on people in that category who have been neglected.
You're also saying that in general there is a need for advocacy but that it's being met. I think the basis on which we initiated this bill was that this need is not being met. What we're offering is different to anything that was being done before. We've always had volunteers and so on who would help people in distress. We're building on that. We're keeping that. We're not saying we don't need those people any more, but we are setting up an organization which is much more at arms' length from any employer so that people who are advocating will not be running into conflict-of-interest situations and criticizing the organization, whether it's a ministry or whatever that's employing them, and helping them in that much more disinterested kind of way.
We're also giving these advocates, whether they're voluntary or not, powers that they don't at the moment possess to be effective, like to gain entrance and to talk to the people they need to talk to and so on.
You said that the vast majority of people don't have this kind of need, but what about the rest? There are those others who don't have family, who don't have friends, who are neglected, who do fall through the cracks. We need people with powers to be able to do something about that and I think this is what the act is suggesting.
Also, it's not a vast bureaucracy. I believe the suggested number of advocates is 150, which, spread over Ontario, doesn't seem like a large number. I'd like your comments on that.
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Dr Gordon: It's hard because I haven't seen hard figures. The numbers that were bandied about, certainly in the media, were large amounts of money by any way that I would measure how money is going into the system now.
I think there are organizations that exist now that could be enhanced to accomplish this role. I don't understand why one has to create a new organization in order to do it. One can meet the needs and rights of those people who do not have dedicated care givers.
You mentioned certain powers such as rights of entry. That's another issue I have major concerns about, because I think the rights of entry are really quite extreme considering the situation that one can enter without a warrant if one has a suspicion. That's a pretty extreme privilege that very few people have, even in law enforcement organizations, so I have concerns about that.
I have concerns about the fact that there's not a sort of professional body to which these people are accountable. But those are almost getting into the nitty-gritty of the legislation. Once you get into that, there's an assumption that the legislation's already okay, and if we can only work out the rest, then it would be fine. I believe the legislation is overdone, if you want to call it that, in terms of what has to be accomplished. I believe what has to be accomplished can be accomplished much more simply, less expensively, and can meet the needs of the people who require the services of an advocate.
For those with cognitive impairment, perhaps in very early stages there may be some ability to make certain kinds of judgements, and impairment isn't necessarily global; we're all aware of that. But very quickly the issue becomes, "How will I and my family get the care that I need?" more than, "What are my legal rights?" If we look at the desperation that exists now, it's really in the receiving of needed care as opposed to what my rights for care are. You can have the rights for care and still not have it available because it doesn't fit in the system or there's not enough of it to go around.
Ms Carter: But how would you amend the existing system to pick up those people who are still falling through the cracks?
Dr Gordon: One could enhance the role of the public guardian. One could change the mandate of, for example, the geriatric coroners or whatever. You could say, "You have the mandate to deal proactively."
I had a situation some years ago in my own institution where there was a contentious issue, and I knew that when the person died, it would become a coroner's case. I knew; I've been in the system long enough. I called the coroner and said, "Is there any way we could have a pre-mortem?" -- in other words, have the coroner's case beforehand, while it's still fresh in everybody's mind, rather than afterwards. He said that of course he couldn't because the law doesn't allow it; that's not the mandate.
I understand that's the law and the mandate. If you changed the mandate and you said that you could evaluate similar situations -- at risk, contentious -- beforehand, there's an infrastructure already there and there are people and you could add rather than rebuild. Again, if you look at the BC document, that's the approach they've taken: "Let's build on what we have." We have a lot of very good and dedicated people. We have people who have been doing this but have been limited for one reason or another. Allow the mandate to expand to include it.
I'm willing to suggest that maybe I'm wrong on this. Why not do this as a pilot project where you actually examine it in detail? There's a big difference between legislating across the province and saying, "Let's try this out." We can look at the issues that are involved, what the concerns are, what the barriers are, what the real costs are and what the need is. You could take a couple of small, nicely designated areas that have geographic value. It's very hard to do it in a large metropolitan area, but you could do it in smaller communities and you could try it.
When we're faced with this in medicine, that's what we do. If we're not sure if it's worth introducing a universal policy for something, you look at it as a pilot project. You look at the cost-benefit and at the end you make recommendations based on that.
That's what my suggestion is. I'm prepared, if that's the case, to be found not correct in my predictions. Let's demonstrate it before we set up a whole new whatever you want to call it -- bureaucracy, administration, industry -- which commits the government to, I think, a large outlay of money. Let's try it out and test it. It's not that complicated to do.
Mr Sterling: I just want to say that I'm amazed Mr Owens believes this is going to avoid the use of lawyers. I've got to tell you something. This is going to be one of the greatest make-work schemes for the legal aid system and lawyers that has ever been dreamed up in this province, because where do you think the advocates are going to go with the rights of patients who they're acting for after they come to the end of their line with regard to dealing with minor officials? They're going to create a lot of work for a lot of lawyers. I can guarantee that.
Once you create an Advocacy Commission, people to advise people of rights, the next step is, "How do I exercise those rights?" These advocates are not going to be able to go into the courts and exercise those rights for the patients.
I guess one of the most impressive submissions I heard was by the adult protection service workers of this province. There are about 175 of them. Their principal concern in coming in front of this committee was, "Look, we spend 40% of our time advocating now on behalf of people who are vulnerable, who have been sent out of our institutions." Their concern was not about getting more rights to advocate. Their concern was getting ministries to answer their requests for services. It had nothing to do with getting more rights or more advocates out there.
The problem for the government is, are you going to spend money on more people bitching and complaining and asking on behalf of other people or are you going to provide more money to provide services for the people who need them? That's the issue.
We've had a great deal of trouble with this legislation. Nobody can argue against advocacy. Nobody in his right mind can argue against advocacy, but you sure can argue about the economics of this and this is nothing --
Mr Owens: Is that what you call advocates, bitchers and complainers?
Mr Jim Wilson: But if the advocate says she needs a chronic care bed, where are you going to get the chronic care bed?
The Chair: Order. Mr Sterling has the floor.
Mr Jim Wilson: You've taken them all out of Simcoe county, for God's sake. My grandmother's on an eight-month waiting list for a bed. That's where the money should go.
Mr Sterling: Our continual concern with this whole piece of legislation has been that it is --
Mr Jim Wilson: I'm advocating for her and there are no resources.
The Chair: Order, please. Let's keep things under control. Mr Sterling has the floor.
Mr Sterling: I agree entirely with the witness in terms of saying we should, in all honesty and consciousness, try to do this in the most reasonable and most economical way possible for the taxpayer, so that we can provide more services for more vulnerable people. That has been our concern with this legislation. I can only come to the conclusion that this Advocacy Commission is nothing more than a political ploy. That's the bottom line of it. It is a political exercise and has nothing to do with helping out vulnerable people.
Dr Gordon: Since I'm running out of time, I want to remove myself from the political forum because I'm really apolitical in this. I have dealt with all parties equally in my professional experience. I am looking at this as I would look at any initiative that has a clinical impact on people. What we've all been trained to do lately, more so than ever, is to examine it, examine the benefits, the costs and the alternatives. I don't believe this legislation, even with the amendments, measures up to what we are now expected to do in everything else that we do, and I'm very concerned that a commitment would be made to do this without the kind of trial and assessment that might give us a proper answer. Those are my final words.
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Mr Sterling: I'd just like to withdraw two words I used during my outburst, and they were given in a motion, and those were the words "bitching and complaining." I used those in perhaps the wrong context. I intended to indicate the idea of utilizing the system in terms of taking up the time of the system to express concerns of people, which, while it may have some benefit, doesn't have the same benefit as providing hard treatment.
The Chair: Thank you, Mr Sterling. Dr Gordon, on behalf of this committee, I'd like to thank you for taking the time out this afternoon and giving us your presentation.
Dr Gordon: Thank you.
EASTER SEAL SOCIETY
The Chair: I'd like to call forward our next presenters, from the Easter Seal Society. Good afternoon. I'll just remind you that you'll be allowed a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mr Alan Dawson: Good afternoon, ladies and gentlemen. My name is Alan Dawson, and I thank you for allowing me the opportunity to speak to you on behalf of the Easter Seal Society. You may recall from my oral submission to this committee on February 18, 1992, that the Easter Seal Society is a provincial, non-profit organization dedicated to helping almost 8,000 children with physical disabilities in Ontario; 7,200 of these children are under age 16. I am also speaking to you as the father of a nine-year-old daughter who has spina bifida and uses a wheelchair.
I must state that Bills 74 and 109 are very difficult to both read and understand, especially for the ordinary person. There is some ambiguity and there is the risk of misinterpretation by all parties involved. In discussing the acts with lawyers, they have found the same problems. In the short time allotted to me, I want to focus on the shortcomings of the two acts which will have enormous impact on the disabled children we represent and their families.
With regard to Bill 74, originally our major concern was to have included in the act children under 16, which would have allowed them and their families to benefit from the systemic advocacy promised by the act. As I had indicated, most parents are too exhausted from the stresses of looking after a child with a disability and do not have the expertise or time to embark on systemic advocacy to effect such changes. Furthermore, as our children were subject to the provisions of Bill 109, it seemed ludicrous to exclude them from what is supposed to be a companion act.
It appears that due to the amendment of section 3, the act now applies to children under 16 for the purpose of providing rights advice under Bill 109. However, my understanding is that they will have no direct representation or voice on the commission and certainly have no involvement in the activities of the advisory committee in nominating representatives to the commission.
If the children are governed by the act as it relates to rights advice for the crucial purpose of consent to medical treatment, then surely we, their parents, are entitled to the same rights and privileges afforded other groups representing seniors and adults with disabilities. We must be afforded the right to represent our children on the advisory committee and the commission. To exclude us borders on discrimination.
Another major concern I want to bring to your attention is the rights of entry. As I understand it, if an advocate has a suspicion that, for example, my daughter needs his or her services, this individual can demand to have access to my home. If I refuse, I can be subjected to severe penalties. Let me assure this committee that any advocate would most assuredly be refused access to my home on the suspicion that my daughter needs his or her services, particularly as I have no say in regard to the selection, training or accountability of advocates as the act stands now.
Entry without a warrant seems to be an extraordinary power Canadian society does not condone. In this situation, the advocate would have more power than the police, because he or she can enter premises without a warrant. This is a dangerous precedent for any government to be setting.
If there is reasonable certainty that child abuse is going on in any premises, then obviously that child must be protected, but through legislation specifically designed for the purpose. However, the rights of parents, who are accountable for their children, must be respected, and in the absence of child abuse, a parent should be permitted to deal with his own or her private problems without undue interference.
Regarding Bill 109, our position has not changed. This act is very invasive and has the potential to create an unnecessary and destructive adversarial situation between the parent and child. The professional health care giver is also drawn into this unhappy scenario and will be frustrated in his or her sincere attempt to properly and quickly treat the child.
Parents of children with disabilities are used to working as partners with the health care givers: the doctors, surgeons, therapists, psychologists or any other specialist needed by their child. They are used to making decisions on required treatments, some of which have long-term benefits if administered at the appropriate time. Parents take on the responsibility of raising their child with total commitment, dedication, self-sacrifice and always with the best interests of the child at heart.
According to the act, if a health practitioner determines that a child 12 years of age or more is incapable, a rights adviser must be notified and the incapable child also notified of this finding. The criteria to be applied to determine capacity are not set out in the act, but are still unknown and left to be dealt with by regulations.
We know for certain that most children, whether deemed capable or not, would approach many medical procedures with considerable reluctance, even when they clearly understand that the treatment will benefit them. So in the case of a mature, intelligent 12-year-old who refuses treatment out of fear, the act serves to create an adversarial situation between parent, child and health practitioner.
The act will interfere with the parent's right to provide the best medical care for their child, having gone through a lengthy process of medical consultation and soul-searching. The child may only be refusing treatment on an impulse out of fear and with little cognition of the facts and benefits of the treatment.
In an exceptional case where treatment may result in abuse or harm, intermediate investigative counselling should be available to parent and child. Should the potential for abuse through medical treatment exist, this would be more appropriately covered in legislation specifically designed to address child abuse.
Bill 109, as drafted, has the potential to delay treatment, causing harm to the health of the child, disrupting hospital schedules, severely damaging the parent-child relationship and placing an additional emotional and financial burden on families who are already carrying more than their fair share.
We cannot support Bill 74 as amended, particularly as parents and children are still excluded from the service they really need, which is systemic advocacy. We are also opposed to the rights-of-entry provisions because of the extraordinary power they provide to the advocate and the dangerous precedent they set.
We also cannot support Bill 109. The act needs to be clarified as to all the procedures to be implemented in its application. The vagaries and deferrals to regulations impede the possibility for open public scrutiny. What is clear is that the act contemplates adversarial procedures and has the potential to do more harm than good to children with disabilities and their families. We strongly object to the application of adversarial procedures to all children under 16 and certainly the very young, under-12 age group.
It interferes with the right of parents to decide on appropriate courses of treatment for their children in a demographic group that has more frequent need of medical treatment and technology than the rest of the general population. It removes decision-making from parents who know the medical and other needs of their child and places this in the hands of the government through a third party. This is a situation that parents of children with disabilities will not tolerate.
One factor that must be considered is the cost of implementing this act. We submit that the money would be better spent in providing an improved level of health service to children with disabilities. Therapy, technology and research can serve to improve the quality of life of many of these children and allow them the opportunity to play a greater role in society. Thank you.
The Vice-Chair (Mr Mark Morrow): Thank you very much. Questions or comments?
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Mr Alvin Curling (Scarborough North): I think your presentation brings to light some rather interesting questions. In your experience in the Easter Seal Society you of course have seen the handling of millions of children over the years. The question I am going to ask is whether you see the rationale for the government to introduce Bill 74 because, as you say, the bill seems to be intrusive on family and does not seem to add the kind of support the family needs. Do you see any reason why the government would have introduced Bill 74?
Mr Dawson: I've only had time to look at it and discuss this in connection with children, and I see absolutely no value for the children. As I mentioned in my presentation, as parents we spend a lot of time with our children in and out of hospitals and treatment centres, taking them through their various therapies and other appointments they have to go to. We know what that child needs. We advocate for that child. What we really need is more therapy for the kids. We need more services for the children.
We don't need to have a third party intrude on a situation because of Bill 109. I'll just give you a little scenario. Somebody could be at a clinic with his or her 12-year old daughter and there's some serious surgery coming up. The child is reluctant to have the surgery. The parent says to the doctor, "Look, I'll take the child home. We're going to talk about this in the family, in a more peaceful environment," away from the hospital environment, which is always frightening. The doctor is then bound to intrude on that family's life and say, "Well, I have to notify the rights adviser that the child is reluctant to have this treatment." Two or three hours later this rights adviser could appear knocking at the door.
I think it's much better left to the parent and the child to talk about it, explain to the child why the surgery has to be done and deal with it the way we've been dealing with it all along. Common law is there. I see no value for children. It does not give us any benefit at all. It's very harmful. If Bill 109 weren't there, we wouldn't need Bill 74 from the children's perspective.
Mr Curling: Over the years, what sort of support would you say you got from the parents? Is it professional? I presume they understand their children's needs from a very informed base, because they work with their children. Would you say it's a high level of support, or average, or that a tremendous amount of support would be needed for advocacy? At one stage you said in here that many families or parents are very tired and overburdened by this and you said that they add a tremendous amount of support to the support you give here. Would you say their support is pretty high or average?
Mr Dawson: The family support is very high. What happens is that families tend to burn out. You can be at this level for a certain amount of time, but eventually the stresses of dealing with a child with a disability, of all the serious situations, the life-threatening situations that many families go through, will wear them out. But while they can, they do provide a tremendous amount of support and they do advocate.
We've had many families of children who've died who will come back into the system and they'll be there to support families. Yes, they're there because they know the need is there. They may burn out for a while but they come back again.
Mr Curling: My last question, do you think this bill itself will do more harm to that advocacy role the parents play?
Mr Dawson: I think it's not going to help it at all. It's going to do a lot of harm, because it's going to create more stress on the families and it's going to redirect their attention. A lot of them are not going to be able to go along with some of these stresses that are going to occur.
If it happens that a child is now going to go through a third party to decide whether he or she can have surgery, that's just going to put more of a stress on the family. They're not going to have the energy. It's going to be very harmful and it's going to create -- particularly with teenagers; there are enough problems with teenagers, 13-, 14-, 15-, 16-year-olds. We don't need to add to those problems by giving them an out, a third party, that can possibly -- there's no way.
It's going to just create a worse situation because, remember, the children are very often acting out of fear. Any one of us as an adult, confronted with the option of surgery, is going to think about it. I bet there are people in this room who've delayed surgery at times because they've been afraid; I would bet that. Children are going through the same emotions. It's definitely very harmful.
Mr Malkowski: Thank you for your presentation today. I would just like to ask for a clarification about subsection 34(1). I'd ask Mary Beth to clarify that section for us, please.
Ms Mary Beth Valentine: I would like to just clarify for the presenter that I'm not legal counsel, so this not a legal opinion you're getting officially, but I think it might be useful to try and clarify. Related to one of your concerns, that for rights of entry there could be an offence or a penalty, there is no penalty, no offence, for someone in a private dwelling. The issue of any possibility of an offence or penalty relates to facilities and controlled-access residences, definitely not to private facilities.
Mr Dawson: Okay, I thank you for that clarification, but --
Mrs Sullivan: On a point of order, Mr Chair: I wonder if you could further clarify that because it seems to me that even a private room of a patient in a controlled-access residence or a resident in a nursing home is in fact that person's home. I think that's the kind of situation where, if a child is in long-term care, which the presenter is concerned about, the access is in fact given without warrant by the act, perhaps against the wishes of the person involved.
The Vice-Chair: That's not a point of order, but if counsel wishes to clarify, she can.
Ms Valentine: I'm not counsel, but I'll try to clarify. You're absolutely correct, Mrs Sullivan, in your interpretation. As a matter of fact, the bill spells out that the access is to common parts of a controlled-access residence etc and that it is a different situation entering into an individual's apartment or room within such a facility. Then it would be the same type of situation as a private residence.
Mr Dawson: If I could just talk to that for a moment, we really have a real concern about that. I've interpreted that to include private residences. I've talked to some lawyers who've also interpreted it that way. I feel that if this act is going to proceed, something should be put in there to exclude private residences, so that at no time could any family expect a knock at the door and not be subject to the -- I believe it's a $5,000 fine for an individual.
Ms Valentine: I think if you would read perhaps section 34, and then refer back to sections 17 and 18, where the descriptions are of "facilities," "controlled-access residences" and "premises," the clauses were specifically spelled out separately to indicate the difference for private residences.
The Vice-Chair: Thank you very much for that fine presentation.
RIGHT TO LIFE ASSOCIATION OF TORONTO AND AREA
The Chair: We have up next the Right to Life Association of Toronto and Area. Good afternoon. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mrs June Scandiffio: My name is June Scandiffio. I am the president of the Right to Life Association of Toronto and Area. This is Gwen Landolt, who is our legal counsel.
I'd like to thank the committee for allowing us to appear once again. You have before you a very brief brief after all those many amendments. We'd like to indicate how pleased we are that there is a more precise definition of "vulnerable person" and that in fact the capacity to delegate someone as one's attorney was clarified as well. However, we have still a number of problems, and one of them we see as a new problem.
When we looked through the initial draft legislation before the amendments, there was never any indication to us or, I presume, to other people making presentations, that the age for consent for medical treatment would be dropped from 16 to 12. If in fact that had been the case, we would have addressed it in the original brief. It's something we're extremely concerned with. Certainly any child who is 12 years of age can be deemed capable of giving consent for medical treatment. As does the gentleman preceding us, we see it as fraught with many problems, one of the major ones being again this adversarial situation between parents, who are of course the prime care givers and probably know their offspring better than anyone else.
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One of the things, of course, is that a 12-year-old may very well understand the implications but, more often than not, young people are not future-oriented, and the idea of some treatment that is imminent having long-term effects for them might in fact be covered over. Their fear, as the gentleman mentioned as well, is going to make their decision be not necessarily an accurate one.
One of the things is that who is going to decide whether the child is capable is the health care practitioner. Again, if the child is going to the doctor without the parents there, he may be giving just limited background, limited information. The doctor only knows what the patient, the young person, decides to tell him. One of the things we're extremely concerned with here is that there are certain provisions we see in the legislation proposed where a child at 12 and over couldn't make decisions, such as allowing transplant of certain organs of their bodies and so on.
One of the things we feel very strongly, if this legislation is going to go through, is that psychosurgery should be added to your list. A child who is mentally unstable, who is going to require treatment that is going to be potentially so dangerous and so long-term-effective, at a minimum, if you're going to go forward with this legislation, psychosurgery should be added to that list.
In addition, we have to wonder whether children who are experiencing drug or alcohol abuse, in addition to their tender years making it difficult for them to make a decision on treatment, are also handicapped by having an addiction. How clear is their thinking on accepting or rejecting treatment? I think these are areas that you're going to have to look into.
Of course, one of the areas that we see as a major problem is something like abortion on minor children without the knowledge or consent of their family. In addition to the aspects that I mentioned just generally for any treatment, to expect 12-year-olds to make a decision on something that is so important to them and to their future, not to speak of their pre-born child, is to ask perhaps far too much of 12-year-olds without the support of family.
I understand the reason this age drop perhaps was proposed was the fact that there was fear of reprisals on the part of the parents or guardian. If in fact this is the case, then I think, rather than dropping the age to 12, we should have facilities dealing with child abuse, where that child is not placed with that family. The child perhaps could be made a ward under children's aid or something to this effect.
But to just say carte blanche that every 12-year-old should be able to make health care decisions because there might be a problem with family is to us rather draconian. I think most parents in the province would be horrified to realize that they would be excluded from not only consent but even knowledge of their children undergoing or refusing treatment at these very tender years.
We have the Young Offenders Act, which of course is a whole different realm. The whole premise, I presume, for that is that young people don't always have the experience to make good decisions and that we're not going to punish them long-range for a bad decisions they made early in their life.
If in fact we're saying that sometimes immaturity causes people to make poor judgements, surely in something such as medical care, we can't say that the child all of a sudden has greater wisdom than we would allow for someone who does something wrong and then we allow them some kind of backup.
On page 5, I quote Dr Carol Cowell, who advocates in favour of abortion. In 1974 she said:
"I would caution physicians against accept carte blanche the `self consent' of the adolescent girls 16 to 17 years of age for this abortion procedure.... I continue to be astounded at the lack of knowledge of this age group as to what is involved in a therapeutic abortion and its inherent risks....
"Paradoxically, when the age of minority was 18 years there were fewer problems than when it was reduced to 16 years. The depth of understanding and knowledge of the average 16-year-old is best described as `impoverished' when compared with that of an 18-year-old. At the time of an abortion, the younger teenager needs more than ever the support of her parent (or parents) because abortion is a very lonely experience...."
It would be interesting to see what she feels with the age being dropped even farther and farther back.
We have as well footnoted some other studies on the physiological effects of abortion, particularly on young women. I think the bottom line is, whether you are in favour of abortion or not, any parent in the province would be horrified at the thought that his or her 12-year-old would be either accepting or rejecting treatment on anything without his or her knowledge and consent.
I think the way it is set up in particular, as the gentleman referred to, where a third party can be brought into it rather than the family sitting down can cause more family breakdown and all kinds of other problems.
I would like, if I may, to move to page 11, just for a second, on living wills, a different area, Bill 108. We had indicated that when we were here before, we didn't see any reason for the legislation. I'll just go through very quickly some of our concerns that living wills can lead to misinterpretation. The documents are often vague or imprecise, and we certainly can't possibly put on paper every possible scenario for when we become incapable of making our own decisions.
The presumption here is that the family isn't to be trusted. I find it interesting that, really, do we have any evidence to say that parents or husbands or children of people who are incapable have in fact not been looking after their relative who isn't capable of making his or her own decision, or do we have cases where doctors have treated aggressively despite the objections of family?
I have not seen any indication that that's the case. If that were the case of course, then such a thing would be necessary. Sometimes the person may change his or her mind from when he or she executes the will to when it's going to come into effect.
My last point, although there are two other points in our brief, and my real concern was something that was reflected by Dr McMurtry years ago when similar legislation was being proposed in the late 1970s. Dr McMurtry was in charge of the Sunnybrook emergency section, and his question was this, "If in fact we pass such legislation" -- as an emergency person, of course, he was used to making decisions rather quickly; we're not talking about long-term disability and so on -- "do I, as a physician, when someone comes into the emergency, have to go through all their pockets to see whether or not they have a living will document?"
His concern was this: The flip side of treating or not treating is there, that if in fact they don't have certain provisos of when they don't want treatment, does that mean that legally he could be prosecuted if he doesn't do absolutely everything, whether or not he feels medically it's sound? He felt that it was questioning the competence of emergency room doctors to make the decision they thought was best for the patient and that they would be losing time looking for these documents and perhaps treating more aggressively because of fear of legal action taken against them by the family of the person if in fact he doesn't survive.
The bottom line is of course that every one of us has the right to refuse treatment. We haven't seen any reason why the common law has not been -- it's been upheld, so why is this legislation being proposed?
I think most of the people who are concerned with this are the elderly or the people who have long-term disability. One of the alternatives of course would be to look after them, to make sure that their needs are being met so that they're not worried about being a burden or having a burdensome death.
If I may, I'll hand over for a minute to my colleague the section on page 9 of the brief on ensuring ordinary care.
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Mrs Gwen Landolt: We have some grave concerns that there is a monstrous loophole in this legislation. Section 46 says that personal care includes food and nutrition; that includes water and food. If a person empowers a power of attorney to look after him for personal care, it is quite conceivable that he can order under this, since he has the power, the removal of nutrition and in his view it may be in the person's best interests.
We don't for a moment suggest that it was ever intended that this would take place, that someone could simply be incompetent and lying in bed and someone figures that sooner than later to end his "suffering" he can withdraw ordinary care, which is food, nutrition and comfort.
What we would suggest and what we're very concerned about is that it should be clarified and a provision must be placed in the legislation that no one, even if the attorney may think it's in the best interests of the patient, should be deprived of ordinary comfort and care in keeping with his or her human dignity. We would like that clarified. That loophole is there, that the attorney for personal care could in fact say, "It's in the best interests of this patient."
Under section 14 the attorney is allowed to determine only according to the best interests, but in his opinion -- and who's to say he didn't hold a valid opinion? -- to withdraw ordinary care of nutrition and food may be in the best interests of that patient so as to end his suffering sooner than later. We would like to see that loophole covered, just to ensure that everyone, no matter what his or her capacity, is given the ordinary care of food, water and physical comfort regardless of what state of incapacity he or she is in. That's our concern.
Really we have three major concerns in this: one, to recapitulate, is that we are desperately concerned about removing and lowering the age of consent to 12; we are very concerned about the living will provision; and the third thing, to summarize, is that in this ordinary care there seems to be a major loophole.
We know what you're trying to do with this legislation is protect vulnerable people, but what in fact has happened is that it's overreached its objective. We would think that, before this is ever passed into law, there should be a very, very careful reconsideration. We are setting up a financial empire here of advocates. We're having intricate problems with the medical care that people need right away and we're showing that this will lead to a breakdown of the family unit, which, after all, is a very basic unit of society in this province.
We want mothers, fathers and children to work together, and in those exceptions when they don't, then you can have children's aid. Under the Child and Family Services Act, if there is a child in need of care -- and that's what the act says -- then the children's aid can step in, but the vast majority of people in this province do care about their children, they do care about their relatives who are vulnerable, whether parents, sisters or brothers, and this seems to be an overt intrusion into family life and the sanctity of family life and a breaking down of the family unit.
We do feel this will be extraordinarily dangerous and we would like to see this thing rethought entirely before it's passed into law, because the dangers are so powerful that I think there has not been the proper balance to protect all members of our society by this legislation.
The Chair: Thank you. Questions and comments.
Mr Malkowski: Thank you for your presentation. I'd like to clarify on page 2, the amendments, where you talk about concerns about complaints, an appeals process and the family's role. But in clause 7(1)(k.2) of our amendments of course we are subject to the approval of the Minister of Citizenship by making available to any person on request a written review process to deal with complaints from any person relating to the advocate. That's just to clarify that.
Mrs Landolt: Is that Bill 108 you're referring to?
Mr Malkowski: Bill 74, clause 7(1)(k.2).
Mrs Landolt: That gives the role, but there are internal controls of the advocates, that the commission is responsible for the work of the advocates. The problem we see is that a member of the public, a parent or a relative, doesn't have a way of appealing. That's our concern, that they're not getting the opportunity to have an appeal. The advocate may be acting according to his best interests and the commission may think it's to the best interests, but the family member does not have an outside way to appeal the decision of the advocate or to reject what they're doing. It seems to me it's the outside public appeal, as opposed to the internal controls of the commission, that we're concerned about.
Mr White: Just a small point with regard to the living wills: I understand your organization is basically very supportive of family rights, yet I would have thought the living will is very much an enhancement both of the individual's and the family's rights within a very difficult situation where people have lost control of their lives and where aggressive medical technologies are being used to the disadvantage of their dignity, their sense of wellbeing. It will give them an opportunity, an empowerment, to state how they would like to have their lives ended.
Mrs Scandiffio: I think it's interesting right now. I know when my father and father-in-law were both very ill, the family had a great deal of input as to the treatment once our parents became incapable of expressing it. We were fortunate, in a sense, that it was a gradual deterioration, so we knew what their wishes were. They had an opportunity to express that to us.
To presume I cannot do that now without this legislation I think is a false assumption and to presume that doctors are always going to use aggressive treatment despite the family's objection -- I would like to know if the OMA or the CMA have documented cases with families complaining, because that's not good medical practice if in fact the doctor isn't looking after my wishes or family wishes.
Our concern is that as soon as you try to put those wishes on paper, not every case scenario is going to be covered. In fact, with some of the elderly, there's the possibility of coercion, subtle or not so subtle; that they see I'm exhausted coming down to the hospital every night, that type of thing. It could be financial. Whereas in our province we're not going to be burdened with paying for the health care cost, in the United States it's a bigger problem. If my father saw that I'm going to lose my home because he's going to live another month and it's costing $800 a day for the bed, he might be a little different in his attitude about treatment.
I see now the possibility of families working together. If either the doctor or the family feels the patient is being abused, I don't see that we can't rectify it now. There are ways for us to do that; we don't have to have a piece of paper.
My other concern, as I said, is the flip side of it, that if I don't have that piece of paper, does it mean therefore that I want aggressive treatment? I don't think that's necessarily true, but the doctor is going to say, "I don't see that."
Mr White: At present, though, the policies of hospitals differ in these areas. I know of many situations, some of which I'm very personally familiar with, where, frankly, people have been kept alive despite the expressed wishes of both the family and the individuals involved. As you say, that may fly in the face of some doctors' viewpoints; regardless, that is the kind of technology we're faced with at the moment.
Mrs Scandiffio: Well, I think to report those doctors --
Mr White: And having the opportunity to express one's intent empowers that individual and that family, I would think.
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Mrs Landolt: I would like to add something from a legal point of view. If a doctor is using excessive treatment contrary to the approval of the family, he therefore has acted in a tort or wrongful act, because that's an assault on the patient. He is only allowed to act with consent, if the patient can give the consent and the next of kin gives the consent. So there's already set up under the common law that you can then sue the doctor as the next of kin, or the patient if he's able to, for tortious act of assault because he's given medical treatment without the consent of the patient or the family. That's a very serious thing. There's always the protection set in that they don't use excessive treatment because they have to get the consent always. If the family says no or the patient says no, they cannot do that because they'll be accused of assault. We have the 1990 decision of the Ontario Court of Appeal in Malette saying that the patient makes the decision or the next of kin, and the doctor has no right to contravene the decision, because it's an assault on the body.
The Chair: Mrs Scandiffio, Mrs Landolt, on behalf of this committee, I'd like to thank you for taking the time this afternoon and giving us your presentation.
AIDS ACTION NOW
The Chair: We're going to have a small change in the schedule again. I'd like to call AIDS Action Now as our next presenters. Just as a reminder, you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the presenters. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Mr Alan Cornwall: My name is Alan Cornwall. I'm a lawyer and I'm on the steering committee of AIDS Action Now. We appeared before your committee on March 24, I believe, made representations at that point and submitted to you a rather lengthy brief outlining our recommendations. I've brought with me today and delivered to the clerk a copy of a revised version of that brief. My presentation today will be quicker than the last. I simply propose to summarize a few of the major points we'd like to deal with.
Because I intend only to summarize a few of the important points outlined in our brief, I would ask the committee members if they would be so diligent as to perhaps read the remainder of our presentation and the recommendations contained in our revised brief of today's date.
I'd like to start by saying that AIDS Action Now endorses the recommendations and the submissions made by the Ontario Advocacy Coalition, which I believe made its presentation last Thursday. I'd like to now generally summarize some of the more important points in our brief.
First of all, as a general recommendation, we're recommending that the government make the amendments we have recommended in our brief as quickly as possible, enact into law these three bills and proclaim in force and implement as quickly as possible Bill 74, the Advocacy Act, as well as those provisions of part II of Bill 108 which recognize in law the ability of individuals to create legally valid powers of attorney for personal care.
This is something you won't find addressed in the advocacy coalition materials. In our last submissions to this committee, we asked for all three of the bills to be enacted and proclaimed in force as quickly as possible. In fact, we endorse the delayed proclamation of the Consent to Treatment Act and the Substitute Decisions Act with the proviso that we would ask that the provisions in part II of Bill 108 which permit individuals to grant a power of attorney for personal care be enacted and proclaimed as quickly as possible, without delay.
The next point I'd like to address relates to the issue of the granting of powers of attorney in relation to procedures the primary purpose of which is research. I refer to section 15 of the Consent to Treatment Act and subsection 47(6) of the Substitute Decisions Act. In our previous submissions, we acknowledged that the Substitute Decisions Act contains subsection 47(6), which implied that a power of attorney which expressly so provides does confer authority for the attorney to consent to a procedure whose primary purpose is research.
As I stated in our earlier presentation, many people with AIDS and HIV rely upon procedures whose primary purpose is research to access experimental drugs and non-approved therapies. We believe all individuals should have the power to grant a power of attorney which confers authority to consent to such procedures. We believe all health practitioners must be required to recognize decisions made by validly appointed substitute decision-makers with respect to procedures whose primary purpose is research.
In the revised, amended versions of these statutes, subsection 47(6) has been removed from Bill 108 and section 15 has been amended to provide that nothing in the act affects the law as it relates to that issue. It's our humble representation that the common law on this point is not clear and we need clarification in the statute. If it's the intention of the committee to permit such powers of attorney to be effectively granted, then the act should be amended accordingly, because it certainly isn't clear at this point.
I've just learned recently that there is another government committee which will be addressing this issue in more specificity. We intend to make a presentation to that committee if that opportunity is available. We would like the opportunity to do that if this provision is not included in the Substitute Decisions Act and recognized in the Consent to Treatment Act.
The next issue I'd like to address relates to the revised Bill 109 provision contained in clause 5(2)(b), and that is the amended definition of "informed consent." In short, we believe this provision is unnecessary. It adds nothing useful to the doctrine of informed consent and should accordingly be removed from the proposed legislation. The "reasonable person" standard which is contained in clause 5(2)(a) of that act adequately protects a patient by requiring disclosure of relevant information sufficient to make a decision. The proposed clause 5(2)(b), which creates a more subjective type of standard, could potentially create a duty upon health practitioners to disclose irrelevant, personal or medical information to a patient where a reasonable person in the same circumstances would not require such information in order to make an informed decision. Accordingly, we have recommended that subsection 5(2) of Bill 109 be deleted.
We do, however, recognize that this may have been an attempt to grant an added level of protection to persons and patients. In the event that it is this intention this committee wishes to address, if this provision is to remain in the statute we believe something must be added to make it clear that the right to information does not extend to personal and medical information relating specifically to the health provider but rather just to the actual procedure or treatment itself. In fact, we've recommended specifically that a provision be added to section 5 of Bill 109 stating that nothing in this act requires a health practitioner to provide personal or medical information about the health practitioner to a person.
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The next point we'd like to make relates to the definition of "treatment" contained in subsection 1(1) of Bill 109. As you're aware, the Progressive Conservative amendment that was requested in the last round was adopted and added to the end of subsection 1(1). I refer to the language "but does not include a prescribed thing." We strongly object to the inclusion of these words in the definition of "treatment" on the basis that the meaning of "prescribed thing" is unclear and could be used to severely limit a broad range of treatments for which informed consent ought to be obtained.
On the one hand, "prescribed thing" could mean anything prescribed by a physician. We would object to the exclusion of such treatments from the definition of "treatment" for the purposes of the Consent to Treatment Act. Alternatively, "prescribed thing" could mean anything prescribed by regulation made pursuant to the act.
If this is what is intended, it is our position that any prescribed treatments to which the act will not apply must be discussed before enactment of this statute and must be identified within the act itself and not by regulation. This issue must be resolved before enactment or proclamation of the act.
If this type of exclusion is to appear in the act, the following questions must be addressed in the act:
1. What treatments will be prescribed?
2. Who should determine what treatments are excluded from the act and how are they to be decided upon?
3. What criteria should be used to justify exclusion of a particular treatment?
4. On what basis should health practitioners be permitted to forgo the requirement to obtain informed consent?
Exclusion of particular treatments from the provisions of this statute would result in individuals being deprived of existing common law rights. The right to grant informed consent, which is embodied in this proposed legislation, must be viewed as fundamental and no person should be deprived of this right. Where, due to exceptional circumstances, the health practitioner wishes to proceed without informed consent, the circumstances in which such action would be acceptable should be clearly defined in the statute. The addition of the words, "but does not include a prescribed thing," is an unacceptable attempt to address unidentified issues which can only be properly addressed by specific remedial provisions in the statute itself.
The process by which such exclusions are determined must be subject to the safeguards and public scrutiny of this process, the legislative process, and the process of the courts. At the very least, a set of criteria justifying exclusion of certain things or treatments or procedures from the definition of "treatment" must be set out in the act itself.
We're not sure what that amendment was intended to address. I note the questions that were asked of us at a previous presentation relating to diagnosis being included in the definition of "treatment." I'd like to reiterate the comments we made at that time in response to those questions. We believe generally, though, that it is not an appropriate mechanism for addressing any of those concerns to simply throw in a sloppy regulatory power. A power to make regulations does not address the issues that are being raised.
Finally, in closing, I'd like to just draw a general reference to our submissions relating to privacy and confidentiality of information. You'll find these contained on pages 11 and 12 of our brief. Specifically, we draw your attention to subsection 30(4) of Bill 74 and emphasize the importance of ensuring that certain types of medical information relating to individuals is highly confidential in nature and should not, in any circumstances, be open for disclosure by an advocate unless it's absolutely necessary for the health and safety of the individual.
We have proposed an amendment to subsection 30(4) of that act that was not adopted in the last round. We'd ask that you draw your attention to that proposed amendment again, as well as to our request that all records, files and information in the hands of the Advocacy Commission be made subject to the provisions of the Advocacy Act and not the Freedom of Information and Protection of Privacy Act.
In summary, those are the main points. Once again, I'd like to ask you to review the remainder of our recommendations. Thank you.
Mrs Sullivan: Thank you very much, Mr Cornwall. It might not surprise you that we go back to the comments you've made about treatment as defined in Bill 109. I saw Mr Sharpe here a few minutes ago. Has he left? I'm wondering if we could have both Mr Sharpe and Mr Fram at the table to address the point that Mr Cornwall has made with respect to the fact that in Bill 108 the definition of "personal care" does not include treatment, as included in Bill 109.
The Chair: Mr Fram or Mr Sharpe or both?
Mrs Sullivan: I think we need them both. The question that Mr Cornwall has raised is that in Bill 108 the definition of "personal care" does not include treatment, as defined in Bill 109. How will those two come together?
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Mr Steve Fram: The way Bill 108 deals with the issue is to talk about personal care and then a number of headings, the relevant being "with his or her health care." "Health care" is a broader term than "treatment" and it has to do with preventive measures, general exercise, all sorts of things that include but extend beyond the issue of treatment.
When it comes to specific treatment issues, it's the consent to treatment issue that picks it up and says the first person to make a treatment decision, as defined under the Consent to Treatment Act, is the person named in the power of attorney as attorney. So that's how the two bills fit together.
Health care is a broader notion including treatment. The authority to make a treatment decision, in the consent context, is given by the Consent to Treatment Act. Isn't that the way we worked it out, Gilbert?
Mr Gilbert Sharpe: Is this on the record?
Interjection.
Mr Sharpe: The guardian is certainly empowered to make the substitute decision based on Bill 109, where health care treatment is determined. I think the simple, straightforward approach would be that if it's medical care of some kind, health care, 109 would govern and 109 recognizes the guardian as defined in 108, where the substitute consent provisions provide a role for the guardian. As you know, this is a gradation of family and people chosen by the incompetent person and so on, but the empowerment of the guardian comes through 109 and therefore it isn't necessary to look to 108 for the purpose of medical treatment or health care.
I'm sorry; I missed what the point of the question was in the context in which I'm giving this answer.
Mrs Sullivan: I think the concern of AIDS Action Now was that the power of attorney, which authorizes the attorney to provide consent for personal care, does not include the word "treatment", which is included in Bill 109, and the words "health care" are apparently vague enough that they may or may not cover the specifics of treatment as included in 109.
Mr Sharpe: The hope we had was that 109 would provide the notion of living wills and advance directives, and that through regulations and education people would come to think in terms of specificity when looking at termination-of-life decisions. These are Mr Sterling's bills that we were hoping to embrace in much of 109.
In the amendments to 109, when I was going through this a few months ago, I described how we had attempted to streamline the provisions so that more recent wishes expressed by the patient would govern where possible, and that while we would hope most patients who were concerned enough to complete a living will or an advance directive would take the time to follow the general guideline we would set out in regulations, they wouldn't have to use the forms we specified. We've met with groups like Dying with Dignity to make sure the flexibility was there.
While someone might just deal with 108 to set out a power of attorney with all kinds of instructions in it, our hope is that when dealing with health care and medical care choices, they would also be governed by 109, and that through our educational packages designed for the common, average person, they would have enough guidance to be able to do this, whether or not the provisions were embraced as part of the formal power of attorney that was given under 108 or something much more simple designed just for treatment.
Mr Owens: Just in terms of your concerns around clause 5(2)(b), I'm trying to understand where that concern has come from. Do you have experience in the area that a person may claim to not have had informed consent if the care giver does not reveal personal details of his or her life?
Mr Cornwall: Our submission on that is not based on a specific experience or any number of them. It is, however, my understanding that, for instance, as an example, with the advent of HIV in our society there are many questions as to what types of information can be expected from a health care professional to be given to a patient. Just as an example, we believe it is inappropriate and unwarranted for a patient to make an informed consent argument around the HIV status of a physician.
While I don't think that type of request for information would be addressed or was what was intended to be addressed by this provision, I believe the addition of a subjective standard to section 5 in the definition of "informed consent" creates perhaps a duty on the physician to disclose that type of information. I don't believe that would the intention of this section and I think that would need to be clarified if this was going to be included.
Mr Owens: Just a quick question to the ministry, and perhaps Mr Sterling, if he was here during the passage of the amendment, with respect to Mr Cornwall's concern about a prescribed thing. I'm at a loss to understand what that means, if someone from whichever ministry, Ministry of Health or someone, is available to explain that.
The Chair: That wasn't passed. That was just tabled.
Mr Owens: I see.
The Chair: There isn't anybody here to answer that at the moment.
Mrs Sullivan: Mr Sharpe is.
The Chair: Mr Sharpe? Oh, okay.
Mr Sharpe: Sorry, what was the question?
Mr Owens: In terms of the comment with respect to, "`treatment' means anything that is done for a therapeutic, preventive, palliative, diagnostic" -- blah, blah, blah, down to the last sentence -- "but does not include a prescribed thing," what does that mean?
Mr Sharpe: The concern that was raised by some of the groups that came to the first round of hearings was that the treatment definition was so broad it might include things like bathing a patient in a nursing home or matters that were not intended to trigger the rights advice and all the other protections that were here, that we might want to exclude from this comprehensive net we've established, because the approach we've attempted to take with treatment is of course a very broad one. It's that health care is something done by health care professionals, and with regulated health professions, that now includes a lot of people.
It might be that we decide to put in the regulations later on an exclusion or prescribe that the bathing of a patient in a nursing home would not trigger the rights advice and other provisions of this bill. If the committee likes, I could come back with the list of things that had been raised as concerns by presenters in the spring and give you some of the examples we had in mind when we were preparing that.
Mr Owens: I think that would be reasonable, and perhaps once we get to the amendment stage we could take a look at some kind of clarifier as to what a prescribed thing is, whether it is prescribed by legislation or in terms of some of the activities you speak of at this point.
Mr Sterling: I was intrigued by your view that the Advocacy Act protects the privacy of an individual more than the Freedom of Information and Protection of Privacy Act. Why do you think that?
Mr Cornwall: That's a good question. I'm not sure I'm personally prepared to answer it today.
Mr Sterling: Okay, that's fine.
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Mr Cornwall: I believe there are safeguards in the bill that provide a greater standard of protection for personal and private information than does the protection of privacy act, but I can't give you specific examples right now.
Mr Sterling: Just as a matter of interest, I don't know whether we'd have to amend the freedom of information and privacy act as opposed to doing something else if we were to exclude this act from it. I see it as an added protection and not as something that would work to the detriment of privacy on the part of the patient. But you, yourself, perhaps didn't have the input on that part of the act.
Mr Cornwall: What I can tell you, though, is that the Freedom of Information and Protection of Privacy Act was not specifically designed for this type of situation. I think it would be wise for the committee to look very closely at the extent to which private and confidential medical information concerning an individual needs protection and the circumstances in which it's acceptable for that type of information to be disclosed and for what purposes.
I think this is an opportunity to look at the advocacy legislation, the Consent to Treatment Act and Substitute Decisions Act, and to assure ourselves that the degree of confidentiality, the degree of protection that's warranted in relation to highly sensitive personal medical information that can result in discrimination and severe problems if disclosed -- to ensure that type of information is receiving the degree of protection that it needs to receive in this legislation.
The Chair: I believe we have some clarification here that you've invited.
Ms Valentine: Yes, the presenter is clearly correct: Through FOIPOP, it's possible for a third party to access information. In fact, after being raised earlier by your group and others, that issue was reviewed with the Information and Privacy Commissioner.
If you'd like to refer to Bill 110 at your leisure -- page 8, section 11.1 -- Bill 110 actually amends section 67 of FOIPOP, which basically includes the Advocacy Act now in the list of acts that are exempt from FOIPOP. It excludes specifically advocate client files.
The Chair: Mr Cornwall, on behalf of this committee I'd like to thank you for taking the time out this afternoon and giving us your presentation.
ONTARIO ASSOCIATION OF SPEECH-LANGUAGE PATHOLOGISTS AND AUDIOLOGISTS
The Chair: I'd like to call forward our next presenters, from the Ontario Association of Speech-Language Pathologists and Audiologists. Good afternoon. Just a reminder that you'll 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're comfortable, could you please identify yourself for the record and then proceed.
Mr Rick Welland: Good afternoon to you all. My name is Rick Welland. My colleague here is Sheila MacDonald, and we are both speech-language pathologists. As you will remember, we presented to this committee back in February, and we welcome the opportunity to return today.
As you know, speech-language pathologists and audiologists work with people who have communication disorders. Many individuals with a communication disorder do not have sufficient communication skills with which to speak up for themselves by making a presentation such as this or by lobbying their MPP. As the professionals most familiar with communication and its disorders, we are often called upon to advocate on their behalf. That is the role we will try to fulfil today.
In Ontario it's estimated that there are over 23,000 adults with communication disorders as a result of a stroke. In addition, each year more than 18,000 Ontario residents will sustain head injuries which can result in cognitive and communication difficulties. What these statistics do not include are the thousands of Ontario residents who have communication and cognitive impairments as a result of multiple sclerosis, cerebral palsy, Parkinson's disease, voice disorders, laryngotomy, dementia and many other causes.
Mr Malkowski: On a point of order, Mr Chair: I'm sorry, but the TV fuzziness is really distracting to me, watching the interpreter. Can we turn the background off on the TV? Thank you.
Mr Welland: I'll just pick up where I left off, if that's all right.
These individuals represent a sizeable proportion of the disabled population in Ontario, yet their unique needs and competencies are essentially unknown. They experience difficulties advocating for themselves, as I mentioned, in obtaining and comprehending information and in expressing and defending their rights.
A number of amendments to Bills 74, 108 and 109 have been proposed by the government, many of which were made in response to concerns raised by participants in the consultation process such as ourselves. OSLA strongly supports the majority of these amendments.
With respect to the Advocacy Act, we specifically welcome those proposed amendments that clarify how advocates will be regulated, include family members of vulnerable persons as well as professional and non-professional persons as potential members of advisory committees to the Advocacy Commission, clarify the responsibilities of advocates and provide for the existence of other advocacy services.
Amendments to the Substitute Decisions Act and to the Consent to Treatment Act that OSLA particularly welcomes include the requirement that two assessors, one of whom is not specifically a physician, conduct an assessment of capacity or incapacity, the creation of a registry for guardians and attorneys under a power of attorney for personal care and the involvement of family members in making treatment decisions for incapable persons, yet we continue to have concerns about the impact these acts will have on persons with communication disorders.
Concerning the brief that's in front of you at the moment, there really are only the first four pages I'll be addressing this afternoon. The rest are appendices.
If you can turn to page 3, one of our concerns that has not been addressed in the amendments is the definition of a vulnerable person in the Advocacy Act. OSLA continues to support the inclusion of communication and cognitive disabilities in the definition of a vulnerable person. Communication disorders are not adequately described by the terms "physical disability" or "mental disability." In only 40% of communication disorders is there a physical cause. Furthermore, few service providers who must interpret these acts will be familiar enough to know whether the root cause is indeed physical. For many communication disorders, there are multiple causes. In many cases no cause for the communication disorder is yet known.
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The term "physical disability" within the mind of the layperson and many health care professionals connotes an individual who is impaired in walking or movement. The term "physical" is misleading in that with most of the individuals with whom we're concerned it's not their physical limitations but rather their cognitive and communicative limitations that prevent them from exercising their rights. The term "physical" also overlooks the many communicatively impaired people who do not have physical impairments.
Furthermore, there's a concern that individuals with communication disorders in the absence of physical disorders would be mislabelled as "mentally incapable" on the basis of their inability to communicate adequately. For those individuals who are capable of conveying and/or receiving information, albeit in a modified form, and of drawing conclusions based upon this information, the assumption of mental disability would not be in their best interests.
For communicatively and cognitively impaired adults -- and this is a quote from Rozovsky and Rozovsky -- "one of the major problems affecting consent to treatment...seems to be rigid assumptions with respect to the ability to consent on the basis of the label `mentally disabled' rather than on the actual characteristics of the individual concerned."
Mislabelling can have significant negative implications for individuals who have communication disorders. In fact, studies have shown that in the geriatric population being labelled "demented" often results in not receiving appropriate treatment in a timely manner and not having those needs and wants that can be expressed taken seriously. Unfortunately the label, once applied to an individual, remains, often being recited from one report to another without challenge.
It is for the above-stated reasons that we believe this section should read something of the form, "Vulnerable person means a person who, because of the severity of their mental, cognitive, communicative or physical disability, illness or infirmity, whether temporary or permanent, has difficulty expressing or acting on his or her wishes or in ascertaining his or her rights." We believe the inclusion of these terms, "communicative" and "cognitive," would serve to accomplish the following.
It would recognize in statute that communication and cognitive disorders or disabilities exist and that they are distinct from those that are usually connoted by the term "mental or physical disability." We believe that these populations have gone virtually unacknowledged for long. It would protect the rights of individuals with communication and cognitive disorders/disabilities, by so recognizing their distinctiveness; ensure that individuals with cognitive and communication disorders will not be denied access to advocacy services, and promote consistency between the different pieces of legislation already in existence. For example, in the Education Act communication impairment is recognized as a distinct type of exceptionality for students, separate from intellectual, emotional and physical impairments.
The second point: We believe that the rights of individuals who have communication impairments can only be ensured if there are directives within the legislation that indicate that they must be provided with appropriate assistance to comprehend the information and express choices to the best of their abilities. Appropriate assistance, we believe, requires that anyone who acts as an interpreter should be trained in the communication needs and techniques that are specific to that person. In some cases the interpreter may be a care giver who is adept at communicating using that person's methods, but in other cases it may be that a communication disorder specialist would be required who might act as an interpreter for that individual.
Such interpreter services should be required in any communication situation where the person's rights could be at risk. These situations would include assessments of capacity, explanations to the person about his or her rights, participation in decision-making, consultation with lawyers, communication with advocates and so on.
There is a further concern, which I'll add now. We wonder how the Regulated Health Professions Act fits in with the Consent to Treatment Act in section 1 where health professionals are defined. At the moment, even in the amendments, the Drugless Practitioners Act and professionals controlled by that act are mentioned specifically. So too is the Health Disciplines Act, but no mention is made of the Regulated Health Professions Act. We have a concern that it be addressed in some fashion so the newly regulated professions will be included as health professionals under the Consent to Treatment Act.
I'm going to conclude now and turn the presentation over to Sheila MacDonald, who will present a brief videotape. In conclusion, I would like to say that in the final report of the select committee on Ontario in Confederation, published in February of this year, the Ontario government recognized the need to address the rights of those with communication disabilities.
There is a correction on the sheet you have. It should say "page 19" and, as I said earlier, communication disorders and intellectual impairments are specifically mentioned as separate categories of exceptionality in the Education Act. If these documents recognize communication disorders or disabilities as unique, surely these pieces of legislation can do no less. It is not possible for us to create equality for those with communication disorders in this province unless legislation provides direct guidance to Ontarians on what they must do when they encounter one who has a communication disability.
Ms Sheila MacDonald: Now I'd like to play two video segments for you that I hope will clarify some of the points and highlight some questions that have been addressed to us since our last presentation.
Those of you in the audience who might want to watch it may want to come around to the other side.
I'd like to play the first segment, which is that of a man who has no physical impairment and no mental impairment but does have a communication impairment. He has what we call aphasia, which means he has difficulty in understanding and speaking but he doesn't have, in the layperson's sense, any physical problems. He walks and does very well.
I'm hoping these two videos will highlight at least three points. First of all, the majority of people with communication disorders are not mentally, intellectually or even physically impaired in the layperson's sense of the term, and it will be many laypeople who will be interpreting these acts and acting on them. Second, each individual with communication and cognitive disabilities has a right to fair, objective assessment that will determine individual strengths and weaknesses, because these have to be looked at individually. Third, many communicatively disordered individuals feel they can make informed decisions if they have an interpreter; by interpreter, I mean someone who knows how to communicate with them. It doesn't need to be a professionally hired interpreter; it could be a care giver who knows how to communicate with them.
Here's the first person. Can you see all right?
[Video presentation]
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Ms MacDonald: In this case, this man has difficulty conveying his point. You can appreciate that he would require some interpretation in order to have his wishes clearly understood. The second point I want to make with this man is that he recognizes that there are some dangers in his trying to stipulate his own care or needs or wishes, that he could easily be misinterpreted. So he has insight; he is a bright man who is having difficulty communicating.
Next, what I'd like to do is to show you a videotape that was made especially for this committee by the Aphasia Centre of North York. A group of people with aphasia, a communication disorder, got together and discussed their rights and they would like you to hear them. These are people with very mild impairment, so it's going to look as though you would understand them easily, but please appreciate that these disorders are on a continuum and that there can be more severely impaired people as well.
The other thing to notice when you're listening to this tape is how each person is different in the extent to which he or she would like to run his or her own affairs. I recognize the acts appreciate that, but we have to consider that each person may need different interpretation as well as respect for his or her individual rights.
[Video presentation]
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Ms MacDonald: What you just saw were people with different abilities who all are clumsy and slower in their communication. They're mildly impaired. There are many more severely impaired people. It's their communication that gets in the way. They are not mentally or physically impaired in any way and the terms "physical" or "mental" would not describe their difficulties.
The other point we've been making today too is that they do see a need for interpreter services to interpret to their lawyers, to interpret documents etc. Those interpreters don't always have to be professionals; in some cases it's a child they trust. But they should have a right to have that person present with them. Those who are working as advocates or lawyers or whatever should know that communication disorders exist in order to know that an interpreter may be required.
I have one more point to make, and that's in the conclusion here on page 4, that we have already in other pieces of legislation a commitment on the part of the Ontario government to consider communication disabilities. For example, on page 18 in the final report of the select committee on Ontario in Confederation, it says, "A particular aspect of such a review" -- meaning reviewing barriers -- "could be barriers encountered by deaf persons and persons with communications disabilities." I'd like to distinguish here that we're talking about communication disabilities, not communication differences such as English as a second language or not knowing the two official languages. We're talking only about those with communication disabilities.
I think it's not possible for us to create equality for those with communication disorders in this province unless legislation provides direct guidance to Ontarians on what they must do when they encounter someone with a communication disorder. It's not going to happen naturally. It doesn't happen naturally. For any of you faced with someone with a communication disorder, you would find it difficult and you would need to have an interpreter or someone there with you.
In closing, I'm going to use the words of those from the Aphasia Centre. This is a letter they drafted and it's attached to your brief:
"To whom it may concern:
"This letter reflects the feelings of a group of people with mild aphasia.
"We feel that we are able to do more things than many people give us credit for. It takes us longer but we get it done. Our problem is talking: We just don't have the wording.
"We believe that we should have the same rights as everybody else. For some things we may need a little assistance in the beginning, but we try to cope on our own.
"We are concerned for people who have a more severe form of aphasia. We had the same problems in the beginning: Other people made decisions for us. We couldn't defend ourselves, so we had to settle for what other people thought we wanted. Our families don't often understand us.
"Please have patience and protect our rights."
I ask you to consider our proposed recommendations.
The Chair: Thank you. Questions or comments.
Mr Owens: I spent last summer with the Ontario Association of Speech-Language Pathologists and Audiologists, and here we are one more time going at another piece of legislation.
Ms MacDonald: You can't get rid of us.
Mr Owens: I'd just like to state that I appreciate your comments with respect to those with communications disabilities. It's a concern I expressed last week with respect to persons who are non-verbal. It's my understanding from ministry staff that we're taking a hard look at how we go about assisting those without the benefit of verbal skills. Again, I appreciate your presentation.
The Chair: Ms MacDonald and Mr Welland, on behalf of this committee I'd like to thank you for taking the time out this afternoon and giving us your presentation.
Mr Welland: Thank you for your attention.
SUBCOMMITTEE REPORT
The Chair: We will now deal with the report of the subcommittee. Your subcommittee met on Monday, August 10, 1992, and agreed to the following: "1. The committee shall hire outside legal counsel to provide the committee with a legal opinion with respect to the common law and the age of consent as it applies to children;
"2. The Chair of the committee shall write to the Speaker of the House to obtain written permission for the hiring of outside legal counsel;
"3. The Chair of the committee shall enter into a contract with legal counsel, not to exceed $3,000;
"4. The committee shall have the Ministry of Health provide the committee with a legal opinion with respect to the common law and the age of consent as it applies to children."
Mr Mark Morrow (Wentworth East): Mr Chair, can we ask for a 10-minute adjournment, please?
The Chair: A 10-minute recess.
The committee recessed at 1626.
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The Chair: I call this committee back to order. There has been a slight oversight. We needed somebody to move adoption of this report first. Moved by Mr Sterling. Comments, questions? Seeing no questions or comments, all those in favour of the subcommittee report? Opposed?
Motion negatived.
Mr Morrow: I'm going to put a new motion on the floor for discussion. I think what we tried to do as a subcommittee was a very valid and very good idea. There's a lot of merit to it, obviously.
Interjections.
Mr Morrow: A lot of interruptions here, Mr Chair. I think it's everybody's realization that we're under an awful lot of financial restraints. We really should be looking at possibly doing it internally. I've talked to the Ministry of Health and it told me this isn't a problem. We do have the expertise here and I would like to move a motion that says that, Mr Chair.
The Chair: What exactly is your motion?
Mr Morrow: The original motion stating that we have an external legal counsel: Just change the "external" and move to "internal."
The Chair: Would it be easier to move number 4 from the original report?
Mr Morrow: Just give me one moment, please, Mr Chair. I'll just move item 4 of the original report.
The Chair: Mr Morrow moves that the committee shall have the Ministry of Health provide the committee with a legal opinion with respect to the common law and the age of consent as it applies to children.
Any discussion? Mrs Sullivan.
Mrs Sullivan: While I have great respect for the counsel in the Ministry of Health, the reason the opinion was asked for was that the counsel for the Ministry of Health presented, in amendment form, the age amendments as they've been put forward. It would not be my view that it would be appropriate for the Ministry of Health lawyers to provide us with this advice when in fact we're seeking alternate counsel to the opinions they've already put forward.
My understanding is that within government George Thomson has in the past, I think in relation to the Child and Family Services Act, done a similar internal study. It might be useful for us to obtain that.
I think the intention of the subcommittee was that counsel be available to the committee to provide advice that is independent of the Ministry of Health. The government member of the committee concurred with that in the subcommittee meeting, and it appears he's had advice and direction from outside the committee to the contrary. It seems to me unusual that he would have had that direction after the decision had been made. In fact, I think that's a bit of an affront.
Mr Sterling: I guess the reason I asked for some kind of clarification about the common law in dealing with consent to health care treatment for adolescents in particular, but also children, resulted from a difference between what a very highly skilled physician came forward and expressed, his interpretation of the common law, and what we heard from a Ministry of Health official who differed with that particular physician.
Having practised law for some period of time before I was engaged in politics, I do know that lawyers differ from time to time and have differing opinions. It would therefore, in my opinion, be most helpful if we had someone other than the self-serving interests of the Ministry of Health state his opinion with regard to probably the most important issue in dealing with all these bills.
I want to say at this juncture that I am particularly peeved that during these hearings we've had sporadic attendance by the Health ministry's legal counsel. We've had no attendance by the parliamentary assistant to the Attorney General, no attendance by the Attorney General, no attendance by the parliamentary assistant to the Minister of Health, no attendance by the Minister of Health and no attendance by the Minister of Citizenship.
We are trying to be as reasonable as possible in reaching reasonable conclusions with regard to this legislation. To make the argument that $3,000 is a large amount of money when we're considering the expenditure of somewhere between $30 million and $130 million -- and we want to get it as right as possible -- I think is a specious argument. Notwithstanding that, I would like to save $3,000 if it can be.
What I suggest is that we get the Ministry of Health's legal opinion with regard to the common law on consent to treatment for children and then perhaps we might ask the clerk if she would take that opinion to outside counsel and ask them what it would cost to either confirm or differ from that particular legal opinion. If they confirm, we can then have some kind of costing as to what that might set the committee back.
I understand from the clerk that it's not possible until next week for this committee to expend any money with regard to an outside legal opinion. So we'll have time, I presume, to get the legal opinion from the Ministry of Health at that point in time and then we might ask the clerk to come back to the committee and tell us how much it's going to cost to either confirm or get another opinion if that is necessary.
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The Chair: Are you moving an amendment?
Mr Sterling: I don't know whether we need one if she's not going to spend any money at that point in time. If anybody disagrees with that, then I'll move an amendment to it.
The Chair: Okay. Mr Morrow.
Mr Morrow: Actually, I happen to concur and agree with both opposition parties. Mrs Sullivan raised a very good name, and I think it might help us out of this deadlock: George Thomson from the Attorney General's office. Would both be agreeable to that? Other than the Ministry of Health.
Mrs Sullivan: That's only part of the point.
Ms Akande: Is this an amendment?
The Chair: Not at the moment.
Mr Morrow: We don't have an amendment on the floor?
The Chair: Not yet.
Mr Morrow: So we're still dealing with my original motion.
Mr White: I'd like to concur with my colleague Mr Morrow. He's looked at an issue where, frankly, $3,000 on as complex an issue as this is totally inadequate for outside legal counsel. For us to embark upon a project like this, it would probably be astronomical in cost. I think it's responsible on his part to look at internal resources.
I also concur with my colleague Mr Sterling that if the results of that consultation are inadequate, then perhaps we should look at outside consultation, because this is an important issue regardless. I'd like to put an amendment that we look at consultation from both the Ministry of Health and the Ministry of the Attorney General on this very significant issue. I think that goes along with Mr Morrow's point.
The Chair: You're moving an amendment?
Mr White: Yes.
Mr Sterling: Mr Chairman, with respect, all of the lawyers for the government, whether they're under the Ministry of Health or not, work for the Attorney General; they're all paid by the Attorney General. So you're not getting two different opinions from two different bodies; you're getting government lawyers giving you their opinion on government legislation, and that is the objection of dealing with that in isolation.
I don't suspect that the Ministry of Health's or the government's position with regard to the common law on this is going to be wrong. All I want is some confirmation from outside if somebody objects to it. I don't imagine it requires a great deal of research by those who deal in these matters on a day-to-day basis, and it probably would require very little time by lawyers outside who deal with this. There are five or six of them in the province that probably deal very much in this manner.
That's why I would say let's go through the first step of accepting 4, asking the Ministry of Health to provide that. We'll approve that, then perhaps once we get it there can be a motion, unless the government members find a great objection. It's not going to cost us, as I understand it, for Lisa to go to a lawyer and say: "Look, we've got this opinion. How much is it going to cost to either confirm or get another opinion?" All she's doing is finding out what the cost is for the committee. Do you want a motion for that?
The Chair: Mr White, would you withdraw your amendment for the moment?
Mr White: Certainly. I'm withdrawing on the understanding that legal counsel within any ministry may then be employed. Is that understanding correct, as Mr Sterling indicated?
The Chair: Yes.
Ms Akande: Well, I'm of the opinion that in either situation you've got lawyers interpreting case law, whether they're employed by the government or they're employed outside the government. If you're going to get changes in opinion, you're going to get them anywhere; if you're going to get similar opinions, you're going to get them anywhere. I don't think that whether or not they're employed by the government is going to make a difference.
Also, you've already responded to the question of our having this legal opinion and then looking at what it costs. So I think that at least we could have the first part of this motion passed and then perhaps deal with your part, which is the second, because as I understand it, Mr Sterling, you had not put forth an amendment. So if we could vote on Mr Morrow's question, may I call the question?
The Chair: All those in favour of calling the question? All those opposed? Carried.
All those in favour of Mr Morrow's motion?
Mrs Sullivan: I'd like a recorded vote.
The committee divided on Mr Morrow's motion, which was agreed to on the following vote:
Ayes--6
Akande, Carter, Malkowski, Morrow, Owens, White.
Nays--2
Curling, Sullivan.
Mr Sterling: Mr Chair, I want to move another motion.
The Chair: Mr Sterling moved that the clerk be instructed to take the legal opinion received from the Ministry of Health to outside counsel to determine the cost of confirming or providing an alternative opinion.
Any discussion on Mr Sterling's motion?
Mr Owens: Yes. What does it mean?
Mr Curling: Mr Chair, on a point of clarification: I'm trying to understand this. A motion was moved to get a lawyer within the system which wrote this bill to give an opinion on what they wrote. Do we have to move a motion for that? I thought we want an explanation of it. I understand Mr Sterling's motion to say that when questions are being raised here, of course the lawyers in all the ministries want to give their opinion -- fine. But what he was saying, to my understanding, is that that would come automatically from the lawyers listening here to the questions being put by the members of the committee. What he's saying too, I understand, is that an outside lawyer, outside of that system, would give an opinion. We have a debate whether or not we could do that, so we're going to move a motion that the lawyers within the system give their opinion and then move the next motion that the one outside would give an opinion. I'm confused. Give me some direction on this. Do we have to move a motion all the time for this kind of thing?
Mr Sterling: Can I explain my motion? My motion merely says that once we get the Ministry of Health's opinion, we have instructed the clerk to go to an outside counsel to get for the committee a cost of either confirming or writing another opinion. Presumably that would not cost us one red cent.
The Chair: Any further discussion? Mr Morrow.
Mr Morrow: Mr Sterling, would you be agreeable to just getting an idea of a quote, having the clerk to that?
Mrs Sullivan: That's what the motion is.
The Chair: That's all he's asking.
Mr Sterling: I only thought that if the clerk had the other opinion in hand, the lawyer might say to her, "I entirely agree with this" or "I disagree with it." I don't know how long the opinion might be. If it's a page and a half or two and a half pages, it might take the lawyer all of five or 10 minutes. He'd say, "I agree with this opinion," and that would be the end of the case. That's why I thought it would be of some help if she had that opinion along with her. I don't know.
Mr Morrow: The only problem being, which lawyer would the clerk approach?
Mr Sterling: I would leave that to her discretion.
The Chair: The clerk has a list of experts.
Mrs Sullivan: I want to put it on the record now, before the vote, that I really object to this procedure. The government participated in the all-party steering committee decision to obtain counsel, and now, because minions from ministers' offices have come in and interfered with the decision of a government member who participated in that committee, a change has been made and all this cumbersome baloney we're going through is now occurring. I really object to that.
We have seen, as Mr Sterling has pointed out, inadequate attention paid by the ministers themselves to the entire affairs of this committee. In fact, it's my view that the ministers don't even know what's in their bills. Now we see representatives from the ministers' offices directing a member of this committee who is of the government party to change a decision and rescind the vote he took in the steering committee. I find that highly objectionable.
Mr Morrow: In all fairness, I had an afternoon to think about what happened there.
Mrs Sullivan: Baloney.
Mr Morrow: I reflected on it.
Mrs Sullivan: Baloney.
Mr Morrow: Excuse me, Mrs Sullivan. I allowed you to talk; now allow me to talk.
The Chair: Through the Chair, Mr Morrow.
Mr Morrow: I had the afternoon to think about the decision that was made and decided that it was not in the best interests to do that.
Mrs Sullivan: Baloney.
Mr Malkowski: On a point of privilege, Mr Chair: I think the language Mrs Sullivan is using is unparliamentary and should be withdrawn.
Mrs Sullivan: Mr Chairman, can I ask you to please get a ruling from the Speaker if the word "baloney" is now on the politically incorrect list of words that are not allowed to be used in this committee room or in the chamber?
The Chair: I don't believe "baloney" is on a banned list.
Further discussion on Mr Sterling's motion?
All those in favour of Mr Sterling's motion? Opposed? Carried.
Motion agreed to.
The Chair: Seeing no further business before this committee, we stand adjourned until 10 o'clock tomorrow morning.
The committee adjourned at 1653.