AD HOC COMMITTEE ON THE ADVOCACY ACT, SUBSTITUTE DECISIONS ACT AND CONSENT TO TREATMENT ACT
ONTARIO FRIENDS OF SCHIZOPHRENICS
CAMPAIGN LIFE COALITION ONTARIO
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
CONTENTS
Tuesday 11 August 1992
Advocacy Act, 1992, and companion legislation
Ad Hoc Committee on the Advocacy Act, Substitute Decisions Act and Consent to Treatment Act
John Ellis, executive director, Alzheimer Association of Ontario
Elsie Etchen, president, Ontario Friends of Schizophrenics
Ms Barbara LeBlanc, manager, health policy, Ontario Medical Association
Patty Simpson, policy analyst
Deborah Wall-Armstrong, board member, Ontario Nursing Home Association
York Support Services Network
Karen Hirstwood, program manager, York region, north
Penny Hubbert, board president
Ontario Friends of Schizophrenics
June Beeby, executive director
Elsie Etchen, president
Campaign Life Coalition Ontario
Clare Dodds
Kurt Gayle
Ontario Association of Children's and Youth Institutions
Claire Braseliten, executive director
Julie Ann Wolfe, volunteer board member
Ontario Association of Residences for Troubled Youth
Andrea Rifkin, board secretary-treasurer
Gita Schwartz, executive director
Ontario Association for Community Living
Audrey Cole, chair, committee on advocacy and guardianship
Cheryl Easton, president
Judith Sandys
Rod Walsh, legal counsel
Alliance for Life
Jakki Jeffs, Ontario executive director
Regina Weidinger, national executive board member
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
*Sullivan, Barbara (Halton Centre L) for Mr Chiarelli
*Tilson, David (Dufferin-Peel PC) for Mr Harnick
*White, Drummond (Durham Centre ND) for Ms Carter
*Wilson, Jim (Simcoe West/-Ouest PC) for Mr Runciman
*In attendance / présents
Also taking part / Autres participants et participantes:
Fram, Steve, counsel, policy development division, Ministry of the Attorney General
Malkowski, Gary, parliamentary assistant to the Minister of Citizenship
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 1009 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.
The Chair (Mr Mike Cooper): I would like to call this meeting of the standing committee on administration of justice to order. We'll be continuing the second round of public hearings on the amendments to the advocacy package. Before we start, Mr Wessenger would like to make a comment.
Mr Paul Wessenger (Simcoe Centre): Yes, thank you, Mr Chairman. I noticed, in looking at the Hansard yesterday, a comment by Mr Sterling that stated that during these hearings there has been no attendance by the parliamentary assistant to the Minister of Health. I'd like to put on the record, as I'm sure you'll confirm, that yesterday was the first day I'd missed being in attendance. The statement by Mr Sterling was completely inaccurate.
Mr Jim Wilson (Simcoe West): He can only correct his own record, Mr Chair.
The Chair: That's right. Thank you for that comment, though, Mr Wessenger.
AD HOC COMMITTEE ON THE ADVOCACY ACT, SUBSTITUTE DECISIONS ACT AND CONSENT TO TREATMENT ACT
The Chair: I'd like to call forward our first presenters, the Ad Hoc Committee on the Advocacy Act, Substitute Decisions Act and Consent to Treatment Act. Good morning. As you know, you'll be allowed a half-hour for your presentation. The committee would appreciate it if you kept 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.
Ms Patty Simpson: Good morning. My name is Patty Simpson. I am a registered nurse and policy analyst with the Registered Nurses' Association of Ontario.
My role today, however, is as spokesperson for the Ad Hoc Committee on the Advocacy Act, Substitute Decisions Act and Consent to Treatment Act, a committee made up of the Alzheimer Association of Ontario, the College of Nurses of Ontario, the College of Physicians and Surgeons of Ontario, the Ontario Friends of Schizophrenics, the Ontario Hospital Association, the Ontario Medical Association, the Ontario Nursing Home Association and the Registered Nurses' Association of Ontario.
The members of the committee reflect, as I think you will agree, a unique combination of family-based advocacy groups and health care, institutional, professional and regulatory bodies. All have a significant interest in the government's proposed legislation on advocacy, consent and substitute decision-making. Each has already made, or will be making, a submission on issues of specific relevance to its individual mandate.
The purpose of the joint submission distributed to you today is to highlight some of our major concerns about public safety and interest.
The committee acknowledges and welcomes many of the extensive amendments the government has already introduced. A number of substantive technical issues, however, continue to be of ongoing concern, and it is these which are the focus of much of the discussion and recommendations set out in our brief. We do not plan to go through these technical items with you today, except to flag them for your later review.
With respect to advocacy, the brief addresses issues relating to scope of the rights of access to records, rights of entry to private premises without a warrant and the definition of private premises, composition of the Advocacy Commission, means of dealing with complaints against advocates and terms of reference of the advisory committee.
With respect to the consent legislation, we have concerns about the reasonableness of using location of treatment rather than the nature of treatment to determine the need for rights advisers, treatment of patients in moderate pain when a rights adviser is not available within a reasonable length of time, the qualifications of and standards governing rights advisers, emergency admission to hospital in the event of an acute psychotic episode and the impact of the proposed legislation on the common law on restraint.
Finally, in relation to substitute decision-making, the brief focuses on the power of a guardian to apprehend, under a partial guardianship order, the impact of the powers of the Consent and Capacity Review Board on a Ulysses will and assuring the reliability and validity of preferences or instructions -- what is referred to as "wishes" in the bills.
These technical issues of content aside, the fundamental concern which has brought the members of the committee together is that implementation of these bills not place the safety and wellbeing of members of the public at risk.
It is this question of how the legislation is to be operationalized which constitutes the focus of our presentation today. More particularly, we have two goals: to convey to you the need for consultation in the development of the regulations and to convey the need for a comprehensive plan to ensure that clients, families and care givers understand their rights and obligations under the legislation before the legislation is put into operation.
First, turning to the issue of regulation development: The government has reiterated on a number of occasions that it does not intend the legislation to obstruct the effectiveness of day-to-day delivery of health care services, but it is precisely in the direct day-to-day delivery of health care that public safety is most at risk. Mechanisms and procedures that ensure that the operationalization of the legislation is both practical and consistent across a wide range of delivery settings are imperative. To a very large degree, however, these mechanisms and procedures will be matters of regulation, regulations which at this time are still totally unknown.
The extent to which the deliverers of health care services are to be involved in the development of such regulations has been quite unaddressed to date. We submit that a formal public consultation process for writing, reviewing and finalizing the regulations putting these bills into operations is required. In this regard, the requirement for prior publication and consultation of the proposed regulations under the Regulated Health Professions Act provides a very good model which we recommend be followed.
The second vital aspect of operationalizing the legislation is the need to minimize the risk to public safety by educating the public about what the legislation means for them as individuals. This set of advocacy, consent and substitute decision-making bills is arguably one of the most -- if not the most -- complex, interdependent and widely applicable packages of legislation to be introduced in the health care delivery system. Some or all aspects of the legislation will require application in a wide variety of health care sites: hospital emergency rooms, doctors' offices, long-term care facilities, community health centres, homes and schools, to name just a few. Furthermore, few members of the public will be unaffected by the legislation, whether it be as a health care client, a family member or a health care provider, be it a medical specialist or a health care aide providing personal care to an individual in the home.
The complexity of the legislation and resulting public perceptions and misperceptions about its meaning mean there is real danger that the system can become bogged down as individuals become unsure of or disagree about the technical requirements of the legislation. In this case, getting bogged down will not merely be a matter of efficiency; it will be a matter of individual pain, suffering and even life. Avoiding this means a paradigm shift in public understanding about the legislation and the availability of the services promised by the legislation. Three conditions must be in place before the legislation is proclaimed if this paradigm shift is to work. These three conditions are:
1. The public must be educated about how they can express their health care instructions, what their authority is with respect to family members and what they are entitled to expect in terms of advice, information and assistance.
2. The infrastructures which will protect the rights provided by the legislation must be in place; that is, the Advocacy Commission must be established, sufficient numbers of advocates hired and trained, and the offices of the public guardian and trustee must be capable of handling the new demands on their services.
3. Health care providers, from heart surgeons advising on an operation to nurses in an emergency room to health care aides working in a nursing home, must be educated so that they can make the myriad of daily decisions about what is required to comply with both the legislation and their professional obligations.
None of these conditions will be possible without a comprehensive public education program, which in turn means time, money and planning. We recommend, therefore: (1) that proclamation of the legislation not occur until the necessary education programs have been initiated and the legislative infrastructures are not only in place but have also been tested; (2) that the government give assurances that sufficient funds will be available to conduct this education and to maintain those infrastructures; (3) that an implementation task force be established and funded by government to determine the core values, the common interpretation and preparation of materials to be used throughout the public and professional education program.
I would like to thank you for the opportunity to be here and to make this submission today. Both I and the other representatives of the committee who are with me today would be most pleased to answer any questions you may have.
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Mrs Barbara Sullivan (Halton Centre): I couldn't agree with you more on the point you've made about the necessity for prior publication of the regulations for public discussion so that they can be available, understandable and discussed in a manner that in fact makes them implementable. We've seen, as we've gone through this legislation, enormous difficulties that arise when words are understood in different ways or when, because of new rights being given, the best interests of the patient may in fact be interfered with. Additionally, the setup of the implementation committee, as you've recommended, is one that I hope the government will take to heart. I think that whether it's advocates' groups, facilities that care for people who are ill or physicians' offices, the concerns that have been put before the committee about how these bills are in fact going to be put into practice are very serious indeed. I sincerely hope that the parliamentary assistant to the Minister of Health and the other representatives from the other ministries will take those recommendations back to the ministers. We will certainly continue to emphasize them.
I'm interested in some of the material that's included in the attached paper, particularly with respect to the position of the advocates and new powers given to advocates that may well interfere with the facility providing health care or with the privacy of the patient himself or herself, that indeed may intrude on the patient's right to say no.
While your introduction has related more to the implementation, could you speak more specifically in response now to the recommendations made with respect to Bill 74: rights of entry and determination of vulnerability by the advocate rather than by the health professional?
Ms Deborah Wall-Armstrong: My name is Deborah Wall-Armstrong. I'm a board member with the Ontario Nursing Home Association. In regard to those issues, I wanted to point out what we're concerned with is an apparent lack of checks and balances in the advocacy legislation, which doesn't provide for the individual who may be deemed vulnerable by an advocate having an opportunity to challenge that. We are asking that consideration be given similar to that under the Mental Health Act in dealing with issues such as vulnerability and capacity and that the individual have an opportunity to be notified about that kind of decision and have an opportunity to challenge it if he has a concern in that regard.
In regard to the rights of entry, that's on page 11 of our paper. The main concern we have is that the advocates are being given powers to enter homes without a warrant. We find it very hard to understand why there's a need to be so excessive in this. The sanctity of private property is a cherished principle by all individuals. We feel this could create quite a bit of public furore. We frankly don't understand the need for it.
We've gone through the legislation and outlined where we see that the individual really does not have the opportunity to refuse an advocate entry without facing charges and fines. We really feel there isn't a need to go that far to properly implement this legislation. The existing powers available for the police if it is a true emergency situation should be sufficient for an advocate. Otherwise they should have to present information as to the need to enter an individual's private residence.
In my particular sector the concern is that we try to encourage involvement of family members with our residents. If I read this legislation correctly, if I take my mother-in-law home and she's vulnerable and because of her condition I open my house to an advocate having a right of entry at any time he wishes to have entry, I cannot stop that. I think a lot of people dislike that kind of idea. I have a concern about the facilities themselves in that the access, for example, into a nursing home may very well be a much broader access than even into a private residence. For example, an individual living in a nursing home -- that is his home -- would not have the right to stop an advocate from walking into his room whether he's in the middle of grooming, entertaining family or whatever. They're not given the same rights as an individual who is living in a private residence, in that in no part of the facility can you stop an advocate from immediately entering without a request.
Mrs Sullivan: If I have an opportunity for a second question, I'd like to move to what I think is a very important aspect of Bill 109, the location of the treatment and the provisions of the amendments which provide different treatment of patients deemed incapable if it occurred, say, in a physician's office as opposed to an institution. You've noted that in your brief on page 19 and I wonder if you'd like to speak to that for the record.
Just while you're deciding who's going to speak to it, I think it's important that this matter be dealt with by the committee, particularly as we're moving from delivery of health care in large measure from the institutional sector into community-based sectors. This is a matter of some concern. Frankly, the amendments caught many of us by surprise and it seems that the government's intention is to slip them by.
Ms Simpson: There may be another member of our group who would like to speak to this, but I think that comments have highlighted exactly the issue, that is, that the location of the treatment should certainly be of lesser concern than the nature of the treatment that the patient or client requires. A lot of our intent in providing this submission to you today is to underscore our interest in quality-of-care issues and that is why we feel that to preserve the delivery of quality patient care services, it is essential to focus on the nature of the individual patient's care needs rather than the location in which that treatment or those needs will be met.
Ms Barbara LeBlanc: I'm Barb LeBlanc from the Ontario Medical Association. I suppose this would fall into the category of one of the practical implementation issues. I think the intention, as we saw it, of the amendment was a positive one, and that was to introduce some controls on when an advocate or rights advice must occur so that it did not in fact occur with every patient no matter how trivial the proposed treatment.
We consider the movement a positive one, but what it has done is that it's made a very difficult rubric of concerns. For example, the practitioner, depending on whether he or she is practising in his or her own office or in a facility, would have different considerations, would have to understand a different set of rules; depending on whether or not the patient was objecting, there would be different sets of rules and so on. I think our concern here is largely that the requirements are made understandable so that they will be implemented properly and that practitioners will in fact understand what's required of them and that rights advice will be made available to those for whom it should be made available.
Mrs Sullivan: Rather than simply the place where the treatment is proposed or where the determination of capacity is made.
Ms LeBlanc: Exactly. The other thing we've looked at is the whole notion of hinging whether or not rights advice occurs on whether the proposed treatment is a controlled act under the Regulated Health Professions Act. As I'm sure all of you know, there's been a long process over about 10 years where there has been a consensus developed on what procedures and treatments are considered invasive or dangerous. So it seems reasonable to us to use that existing standard in this new legislation.
Mr Jim Wilson: Just to follow on that, would anyone like to comment on this question: Do you get the impression that your institutions are going to be stuck for the bill for these rights advisers?
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Ms Wall-Armstrong: From our association's standpoint, we have a long and very well-known history of difficulties with funding. There's a new funding formula coming forward for long-term care, but I'm not aware that this is being factored in yet. From our standpoint, obviously the government funds virtually all our costs, and we anticipate there will be cost in here and it needs to be taken into consideration. We hope the money would be allocated in addition to what they're already looking at in our budgets in long-term care reform. This would be an additional expense on top of what we already have.
Mr Jim Wilson: I just want to say too that we appreciate your comments, which were the focus of your oral remarks today, regarding the implementation and the phase-in of the various requirements in the acts.
Many of you and your members are members of professional colleges. Keeping that in mind, I was wondering if anyone would like to comment on the Advocacy Commission itself. The term "checks and balances" was used. I have a very real concern that we will have an Advocacy Commission that's at arm's length from government that has tremendous powers. It seems to me that the checks and balances we see in the provincial college system really aren't there and it's almost a double standard that the government has in this legislation versus the Regulated Health Professions Act. Are there any concerns you want to put on the record today regarding the commission?
Mr John Ellis: I'm John Ellis. If I can just backtrack one step, accountability is a very important issue that the group here is raising on a number of fronts, accountability of the rights adviser being one of them. Related to your last question regarding funding, the rights advisers really should be accountable to the Advocacy Commission itself. Funding is an important issue, but accountability is the overriding issue. Similarly, accountability of the Advocacy Commission, potentially a very powerful group, is fundamental as well. As the legislation currently reads, there really is no accountability for this group. There has to be some independent, arm's-length committee, panel or something which has the responsibility to oversee the work of the Advocacy Commission as well as to entertain complaints against it.
Mr David Tilson (Dufferin-Peel): I wonder if you could comment on the subject of the care giver, the parent of the handicapped child who -- several from my riding have contacted me with the concern that all of these pieces of legislation are really going to mean more paperwork, more committee, more agency interference, when really all they want is to continue their health so they can look after their handicapped child, whether physically handicapped or mentally handicapped. They're concerned that really all this legislation is going to do is to give them specific grief.
Mrs Elsie Etchen: I'm Elsie Etchen. I'm the president of the Ontario Friends of Schizophrenics. The families we represent have some degree of the problem you've put forward: the paperwork, the interference. They're very concerned about the complexity of the legislation. We've been having meetings, and people just cannot understand it. The worry is that there will be such an interference with the way you can access treatment for your handicapped child, or even a handicapped adult dependent upon the family for support, that the system will become almost a roadblock in the way to get access to treatment.
There are some improvements in the amendments so that access will be easier, but yes, you're right, the families are very concerned about the complexity, about the burden that's being placed on them to find their way through a system. It's a problem.
Mr Tilson: These same families, if I could continue, are concerned as well. Families who are looking after their children, their young people, are concerned about the bureaucracy and the unbelievable cost that this will have. Health is obviously out of control in the province; unbelievable costs.
They are concerned that from the other end of the scale, funding will be taken from other sources, such as long-term care, whether it be from care for the aged or -- I can think of one specific parent who contacted me who was looking after their handicapped child and then expressed this concern about the items I asked in the first question.
They say at the same time that they're concerned about chronic hospitals being closed or the qualifications as to who's going to go into chronic hospitals, or that long-term care institutions are going to be closed for whatever reason because of shifting funding, and that their parents who normally would be placed in these institutions, because of a shifting of funding to cover these advocate armies and other groups -- well, that's what they are; they're clearly advocate armies -- it's going to cost the taxpayers of this province an unbelievable amount of money.
The fear is that other institutions will lose funding or will have to close, and that aged mother and father will have to return to these same families who are looking after their handicapped children or young people, by that time. I wonder if you could comment on that financial concern.
Mrs Etchen: With respect to the costs of the system, we hear from our families exactly what you hear, that the costs that are going to be engendered by putting this system in place could far better be spent on providing more services.
We all saw in the paper in the last few days the tragic death of Dominic Sabatino. The police just should not be called in circumstances like that. There should be crisis intervention services in the community so that crisis intervention services can be called on by families to go out and help them. These things are not available. These are the kinds of things that families want, more services rather than some of the institutional superstructures being put in place here.
You're quite right. We are getting the same feedback as you are, that the costs are perhaps going to be taking away some of the services that people need, or money will be spent on the bureaucracy rather than on the service sector.
Ms Zanana L. Akande (St Andrew-St Patrick): Thank you very much for the brief. It's extremely informative. I'd like to ask a very general question. From the position in which your brief is written and from your comments in response to the questions you've been asked, I have the impression that you anticipate that every situation, every case -- or many of them -- will require the services of an advocate. Am I correct in that?
Mrs Etchen: No, I don't think we are expecting that every vulnerable person would have need for an advocate regularly.
Ms Akande: What types of -- I'm sorry, I didn't mean to cut you off.
Ms Simpson: I was just going to add that our main concern is that the complexity of this legislation does not make it clear, certainly within the practice setting, to care givers when the services of an advocate or rights adviser are called for and when they are not. It's the operationalization of these three bills that poses very substantive concerns for the groups present here today.
Ms Wall-Armstrong: If I might add, in institutional settings, we anticipate in the nursing home, for example, there may be thousands of people who will need those advisers, certainly on an initial basis, in regard to care plans that are set up for elderly people on a regular basis in a setting. With the consent to treatment, initially we anticipate in our sector thousands of our residents having an immediate need for advocate services.
Over time, as the program comes into play, the demand will obviously lessen, but some of our people -- and we're dealing with 30,000 residents in nursing homes alone, without other long-term care facilities -- thousands of them will have, at day one, a need for those kinds of services. So we see it in our sector as a definite implementation concern.
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Ms Akande: What process is there in place now, when you say that thousands of those residents will require advocates right at day one? What process is in place now that allows you to deal with those particular --
Ms Wall-Armstrong: There is no specific process in place. All we have are care givers going on common practice and the public going on common practice. But once this legislation is passed, the care givers will be concerned that they cannot continue their past practices. Legislation is in place and they will be held liable if they continue to go ahead without putting those demands initially on the advocacy service.
It probably emphasizes even more dramatically the need for the educational process before the implementation. Many of the concerns the care givers have may be met, but that's why our whole focus today -- our main, key focus today -- was about implementation, because we anticipate that without a good educational process it will almost nullify the effect as legislation. It will stagnate it right at the start, because there will be such a demand and people won't have an understanding. It won't be able to flow smoothly and it won't do the job it's intended to do.
Ms Akande: I agree with your last comment because I do believe, and we have intended, that those concerns are exaggerated. The advocacy legislation is really intended to address the needs of those who, as a last resort, require the assistance of a neutral body to come in and address their needs. We are not anticipating that every one of those people in your particular residences would require the services of an advocate. So your point around the education, addressing those concerns, is well taken.
The Chair: Ms Simpson, on behalf of this committee I'd like to thank you, as the spokesperson for your ad hoc committee, for coming out today and giving us your presentation.
Ms Simpson: You're very welcome.
YORK SUPPORT SERVICES NETWORK
The Chair: I would like to call forward our next presenters from the York Support Services Network. Good morning. A reminder that you will be 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 are comfortable, please identify yourself for the record and then proceed.
Ms Penny Hubbert: My name is Penny Hubbert and I'm the president of the board for York Support Services Network.
Ms Karen Hirstwood: My name is Karen Hirstwood and I'm a program manager with York Support Services in the north part of York region.
Ms Hubbert: As our mission statement reflects, York Support Services Network believes in the dignity, individuality and independence of all persons.
York Support Services Network provides case management, social advocacy and community development services within the regional municipality of York. We have done this for the past 10 years. We serve adults who have serious psychiatric conditions, adults and children who have a developmental handicap and their respective families.
Services are offered through a variety of programs, including the adult protective service worker program and service coordination case management, for individuals residing in homes for special care programs through the tri-ministry project.
York Support Services Network would like to reiterate our acknowledgement of this government's intentions to protect the rights of vulnerable people and applaud its efforts thus far. Our agency views this innovative legislation as a positive step.
Our comments throughout this submission are based on our experience in service delivery to the populations we have served for the past 10 years. Our remarks focus specifically on Bill 74 and Bill 108, and consideration has been given to how these bills interconnect with Bill 109. These comments relate to the seven recommendations made in our presentation to this committee on February 19, 1992.
The proposed amendments to this legislation have addressed our concerns regarding training for advocates and issues of authority and liability. However, as we understand the amendments, the legislation falls short in some of the other areas addressed in our initial presentation. Our concerns address the following areas: public education, capacity to provide rights advocacy and case advocacy, community development, financial resources and the role of the public trustee's office.
In addition to specific concerns regarding these areas, we have a broader concern regarding the cost of implementation of the legislation. In our current climate of restraint, one cannot separate the potential cost of the legislation from the ideal or standard that it seeks to achieve. While we offer no specific recommendation, we do see implementation of this much needed legislation as an enormous task and pose the following questions: Should we review previous suggestions for service delivery of combining the proposed regional offices with existing services which have infrastructures in place? Could the phase-in implementation of this legislation be considered without the integrity of this legislation being lost? York Support Services Network respectfully recommends:
1. That the public education function of the Advocacy Commission be strengthened and that Bills 108 and 109 include a public education component requirement;
2. That provisions are made for adequate human and financial resources to meet the level of need;
3. That the role of the commission in community development be further defined in operational terms and that the linkage with the broader service system be identified;
4. That the legislation make provision for emergency financial resources to provide a safe environment when all other options have been exhausted;
5. That Bill 108 make provision for restructuring of the office of the official guardian and trustee to ensure that response to issues is flexible and expedient.
The following comments will provide the rationale for each of the preceding recommendations.
Public education: Our previous recommendation: Given the complexity of the various bills which comprise the new legislation and their interconnection with existing legislation, a comprehensive public education campaign is required for vulnerable persons, their families, service providers and the community to become informed.
While the Advocacy Act has been amended to include public education as a function of the commission, there is no provision within the other bills which comprise the new legislation for public education. A comprehensive public education campaign is greatly needed by vulnerable persons and their families, service providers and the community if this progressive legislation is to achieve its goals.
It must be recognized that Bills 74, 108 and 109 do not create or extend new rights to vulnerable people, but rather ensure that an individual's rights and preferences are protected.
We recommend that the public education function of the Advocacy Commission be strengthened and that Bills 108 and 109 include a public education component requirement.
Capacity to provide rights advocacy and case advocacy: Our previous recommendation: The commission needs to be aware that many rights-related issues in community settings can be very complex and that they require long-term involvement to reach resolution. This fact needs to be taken into account in the commission's determination of the advocate's responsibilities in case advocacy versus his role in rights advocacy, which in our understanding is short term.
The Advocacy Act clearly delineates between case advocacy and systemic advocacy. However, it does not address our concern regarding case advocacy versus a rights adviser.
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As previously stated, our experience indicates that vulnerable persons whose rights have been violated or who have unmet needs often require longer-term involvement. This involvement is based on a trusting relationship which facilitates skill development enabling the individual to enhance his or her ability for self-representation.
The role of the advocate as described is essentially that of a rights adviser, which implies short-term involvement. Our concern is that the Advocacy Commission will not have the resources to meet the volume of cases or the time to remain involved in the situations which require longer-term involvement.
For example, during 1991 York Support Services Network provided active services for approximately 800 people. There are an additional 300 people on the wait list for service. Of these 800, approximately 560, or 70%, required advocacy services. These figures represent only one region of the province and two populations which comprise a very small portion of Ontario's vulnerable citizens.
In one situation, which is not unusual, it took over one year to identify the individual's issues and to complete the interventions necessary to resolve the issues. The identified issues centred on the need for alternative accommodation, access to financial assistance, a day program and some health-related concerns. All of these are issues which are frequently experienced by vulnerable persons.
We understand that the involvement of an advocate does not preclude the involvement of other support services where such services are available, but are aware that many of our most vulnerable persons do not have access to such services. It is our fear that without adequate resources, wait lists for advocacy services will develop and those individuals will face yet another barrier to receiving the support and assistance they need. We recommend that provisions are made for adequate human and financial resources to meet the level of need.
Community development, our previous recommendation: Given that the involvement of an advocate will potentially increase access to resources by vulnerable persons, that there be ongoing commitment to the community development component of the legislation to address unmet needs.
The Advocacy Act assigns responsibility to the commission to ensure that community development strategies are applied in the provision of advocacy services. However, it falls short in addressing how this will potentially be operationalized. An additional consideration in this area is that of access, since vulnerable persons and their advocates will increase the demand for service. A system-wide commitment to the provision of resources, particularly financial, is essential or the work of an advocate will be redundant.
Recommendation 3: That the role of the commission in community development be further defined in operational terms and that the linkage with the broader service system be identified.
Financial resources, previous recommendation: Since the involvement of the advocate potentially creates a greater vulnerability for some individuals, that there be a commitment to the provision of financial resources to provide for an alternative safe environment when necessary.
The proposed amendments regarding non-instructed advocacy make provision for the advocate to provide advocacy services to a vulnerable person if the advocate has reasonable grounds to believe that there is a risk of serious harm to the health or safety of the vulnerable person. However, it falls short in defining what advocacy services include.
In many instances, a greater risk can be created for an individual when an advocate becomes involved and inadequate care or potential abuse is revealed. There is a need for readily available financial resources to provide for an alternative environment if necessary.
For example, recently on a Friday evening a York support services worker on her way to a social function noticed a client on the side of the road in a rural area. The client reported that he had left the residential home for special care where he had resided because an altercation had occurred between the client and someone visiting the home operator. The client had been struck by this person. The support worker was able to verify this information by speaking with other residents, and subsequently involved the police. The police were unable to find support for the client's allegations when other residents refused to speak with them. Therefore, their suggestion was for the individual to return home. The York support services worker contacted both another home in the area and a men's hostel in a nearby town. Both places had no vacancy. The client returned to the special care home. The worker called the following morning and was informed that the client no longer wanted service. The worker then visited the client on Monday at his day program and found him to have two stitches in a cut on his cheek, which he reported to have occurred falling down stairs. This is just one example of the need for provision of financial resources for this type of emergency situation.
Recommendation 4: That the legislation make provision for emergency financial resources to provide a safe environment when all other options have been exhausted.
Role of the public trustee office: The previous recommendation was that the present structure and resources of the public trustee's office be restructured to ensure that the office can respond quickly to issues and with the flexibility outlined in Bill 108.
The proposed amendments address to some degree the concern regarding response to a need for emergency medical treatment and clearly indicate situations where a physician can act. However, they do not address the need to restructure the public guardian and trustee's office.
There are many instances where expedient action is required to ensure that an individual's rights are respected. This may involve access to funds or a situation where a substitute decision is required quickly. The current structure of the public trustee's office would not support this.
Recommendation 5: That Bill 108 make provision for restructuring of the public trustee's office to ensure that response to issues is flexible and expedient. We would like to thank you for this opportunity to present our concerns. Karen Hirstwood and myself would be happy to answer any questions.
The Chair: Thank you very much. Mr Curling.
Mr Alvin Curling (Scarborough North): Thank you very much for your presentation. You've outlined, of course, the need for this direction in which the government is going, but you also warned about complexity and the extent to which it can go. You mentioned also that in order for it to work, there must be the financial resources and the proper training and education to along with it. Just yesterday, there was a concern about finding $3,000 to obtain another legal opinion on certain definitions in the bill; they were unable to come up with $3,000 because they have to be very careful about expenditures within government.
Other presentations here have suggested that maybe they should have a pilot project first instead of going head-on with this, so wide and extensive and with the costs involved. You have warned that for all the good intentions of this bill, in order to include everyone somehow it may exclude some people in the process. Will you comment about whether they should look at a pilot project, especially in Bill 74; a pilot project for the advocacy instead of having it widely done over an entire province?
Ms Hubbert: Rather than a pilot project, I think they need to take a look at the people this involves, because it's obviously apparent that there are some people who are a lot more vulnerable than others. We're thinking particularly of people who are in homes for special care who are totally isolated and do not have any family members. I think it would be more suitable to take a look at those people who are in really vulnerable situations and implement this over a staged period, where maybe it doesn't start where it involves everybody initially, and maybe has to be phased in over a longer period of time.
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Mr Curling: You made a good point about those who may not have the family support. That should be looked at seriously. There's the other side of it too, that where the families have been involved this bill somehow excludes the family and maybe brings more friction into the system. Do you see it that way too?
Ms Hubbert: I don't see it that way. I see that where families are supportive and contributing to the care and wellbeing of the person, this would build on that. It's really looking at those people who are either being abused by families or do not have anyone to assist them.
Mr Jim Wilson: I just want to begin by saying that if it was possible to love an inanimate object, I love this brief because I think you've spelled out in a very clear manner for all members of the committee some of the concerns you have and some of the shortfalls of this legislation.
On page 4 of the brief you have, I think, an astounding figure, because it really flies in the face of what the government's been telling us and what its public spin is with regard to the level of need for these advocacy services. The government's been telling us: "Don't worry about it. We're going to hire 150 or 250 advocates. We're not going to tell you the cost, by the way. The need really isn't that large out there, even though we're not quite sure what a vulnerable person is, but we're pretty sure that the need won't be overwhelming and that the commission will be able to handle it," that sort of thing.
But your figure here says that of the 800 clients you were able to get to in 1991, 70% required advocacy services, and you had a tremendous waiting list after that. Could you describe for me what your definition of advocacy services is, because I will again say that your comments throughout the brief match what we've heard from many other groups, that they're doing the advocacy but where the real problem comes is that there aren't the resources to help people. In fact, later in the brief you make an astounding observation. You bring to our attention that advocates could make matters worse, because problems are discovered but the financial resources and community resources aren't there to help people. Would you comment on all that, please?
Ms Hubbert: First of all, there are a couple of things here. If we're looking at short-term numbers and people needing assistance in the short term, that's one thing. Part of the network's service is that we build on what the individual has. We don't see that these individuals should be dependent on us for ever. A lot of our time and focus goes into the retraining and skills training the families and the individual need so they can advocate on their own behalf.
In fact, we do have an advocacy guideline we use, and the first level of that advocacy guideline is that we only provide what is necessary. Sometimes that's just information for families or for clients and they advocate on their own behalf once they have that information. Where they can't, then we advocate with them, if that's possible, and in some cases we advocate for them where they're unable to do that. We also take a look at systemic advocacy: Is this is a service delivery issue and can we assist in getting that corrected?
If we're going to be committed to this, committed to the integration of all populations into society, then we have to look at providing them with the education they need so that they are not completely dependent. I think what we're seeing is a result of a way of providing service in the past that has made people very dependent so they're not able to do this for them now; hopefully, that would improve in the future. The other issue is that this takes time. This is not short term. You have to work where the person is and build on that.
As to your comment about the fact that many people do advocacy in the community and that bringing in another advocate may complicate that issue, I would certainly agree. Sometimes it takes a year to develop a good relationship with people and to actually get them comfortable enough that they can express to you what their concerns are and where they feel vulnerable, particularly if they're living in a home for special care, say.
It would be very difficult to delineate and say, "Hold it; now is the time for the advocate to come in," because the advocacy starts really from day one in your relationship with the person.
There have been situations in another field that I'm involved with where social workers do a lot of the advocacy with the person. When it becomes a legal issue, they consult with the Advocacy Centre for the Elderly and they get the information and they take that back to the client again so that the client decides when they need it or if they feel they want to involve advocacy at that level.
So that's one thing that we have had difficulty with: When would this advocate be called in? Does this mean that our front-line staff at some point would have to say, "I've gone as far as I've gone; we have to call in someone else"? It would hinder the process.
Mr Jim Wilson: Thank you very much for your comments. I have a question for whichever parliamentary assistant would like to answer. I'd like to know the cost of implementing this legislation, where the money's coming from, if money has already been set aside in budgets, because we went through the estimates process this year, the cost to the commission, the cost of hiring the advocates. We've asked this several times, and I don't think we've ever gotten a satisfactory answer. The government's had several months to think about this, and it's really quite unbelievable that it wouldn't have a figure at this point.
Mr Drummond White (Durham Centre): It wouldn't stop people from hypothesizing.
Mr Jim Wilson: Yes, it would stop people from hypothesizing if you people would come forward and tell us the cost of this bloody thing.
Mrs Sullivan: And how much money's committed.
Mr Jim Wilson: And who's going to get cut so you can transfer money to this new system.
Mr Gary Malkowski (York East): Thank you for the question. Right now we're here to hear from the witnesses today on the amendment level, but we do have costs, and there's an analysis in the study going on right now. The report is not yet completed.
Mr Jim Wilson: Perhaps Mr Malkowski could give us an indication of when that report will be completed.
Mr Malkowski: Okay. The costs so far that we've got, after the advocacy system has been established, will be roughly $23 million.
Mr Jim Wilson: That's ongoing, year-to-year operating cost? What's the cost of getting the system up and going? Mr Chairman, it'd be more helpful if the parliamentary assistant would undertake to provide the committee with a breakdown of the costs of getting the system up and going, the timetable involved, how many advocates they envision hiring, training costs -- just a complete breakdown of that $23-million figure.
Mrs Sullivan: If the rights advisers are included.
Mr Jim Wilson: Mrs Sullivan's just made an excellent point. We'd also like to know whether the training and salaries of the rights advisers are included in that figure.
The Chair: If Mr Malkowski could provide the committee with that information.
Mr Malkowski: We'll check the information and get back to you, okay?
Mr Jim Wilson: But, Mr Malkowski, you did say there's an ongoing study. When will that be tabled? When will it be ready? I still need an answer to that question, if you don't mind.
Mr Malkowski: First we're going to have the implementation, and the ongoing study is what's going on.
Mr Tilson: I have a couple of questions as a result of that information. The information that's been given by Mr Malkowski pretty well answers the questions I have that the government really has no idea where it's going on this issue financially. I look at the many calls that come into my constituency office, whether it's workers' compensation, which is a bureaucracy that's completely out of control -- I mean, you call up and they don't have the bodies to answer the phone, let alone deal with problems -- or whether it's social services or any matter that's involved with government; you set up these wonderful bureaucracies, and this is going to be the mother of all bureaucracies. It's going to be an unbelievable bureaucracy. I don't suspect that the figures that have been suggested here even come close.
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I look at your recommendations and I understand them. They're very admirable. But the cost of this -- is the government way over its head? Are they going to get us into something where we're going to create something and people are going to call up my office and say, "You, as the MPP -- I call up this advocate army and they don't have enough members of the army to go around and help us"? Is it something that's completely -- is it a dream? Is it out of control? Or is it something that a government can realistically put forward?
Ms Hubbert: I personally think the government's been way over its head for many years. I think this is not a recent thing that has developed. I think the long-term care initiative is one of the first initiatives looking at how they can take a system with some very good services available and provide them in a cost-effective way by amalgamating some of those services and taking a look at how it's done.
I'm not convinced, personally, that with the advocacy a whole new system has to be developed. I think we really have to take a look at what exists and how we can build on what exists, and that we can't provide the Cadillac at the beginning. After listening to seniors and people with physical disabilities over the last three months in York and Simcoe during our long-term care consultation, I was quite surprised to find that taxpayers are not looking for a Cadillac service. They understand that it's their taxpayers' dollars that are paying for this. What they want to know is: "What is the plan going to be? Is my relative not going to get service until 1996, when that specific service is going to be in? Fine. Just let me know, and let me know that there's been a fair ground for things to be planned out and that there is an overall plan."
I really feel that consumers are very realistic when it comes to the cost of services, and do not expect everything at once.
Mr Tilson: When I look at your recommendations, a lot of which are financial, you're asking for confirmation of financial resources, or that provisions be made. I'm looking specifically at your recommendation 2. Is the government capable of providing that? With this system that's being created, is the government capable of providing not only the financial but the human -- we have to train all these people. Getting along with the question over here, it will be interesting to see. That's a whole other bureaucracy, the bureaucracy of training all these people and keeping them retrained. It's going to be an unbelievable expense. Is the government capable of dealing with your recommendation 2?
Ms Hubbert: If you take a look at building on what exists, on using the resources that are out there and on limiting who we initially start to provide these services to, yes, I think they could. The whole population that we deal with are vulnerable individuals, and they have been at the bottom of the heap for a long time. No one speaks up for psychiatric individuals in the community or for those people who are developmentally delayed.
We could do this with our case situation. We could identify those who are the highest priority of need. When we as an agency talk about having emergency funding, we're not saying that every client we have would get into this situation where we would need emergency funding. This is not an everyday occurrence, but we really feel that when we have a situation where someone is going to be put at more risk because an advocate or someone has been involved, we have to have the $35 or whatever it is to get that person out of there that night until we can find another system.
The other thing is that I don't think you can do this isolated. We have a system where in the whole of York region we could not find an emergency bed for someone who was at risk, so it's not just a matter of dollars for advocacy; it's also a matter of building on the services that exist and how we can provide that service. How can we expand a service that exists already so that they would have an emergency bed?
Mr Tilson: The fear from the general public that has been expressed to me is that when you set up a system such as this, whatever government service is being provided, eventually it gets so big that the service becomes slow. I'm following along your area of the emergency services. So for emergency services required, you need an advocate or you need something that is provided under this bill, but because it gets so massive -- and it will become massive -- will that create more problems? In other words, the slowness; it's not something new I'm telling you. No matter what agency, because of lack of funding or lack of human resources, government moves slowly. If the law says, "Thou shalt have an advocate to do something," and the other group of people can't move without an advocate, then is the whole thing scuttled? Have you solved one problem but created 10 other problems?
Ms Hubbert: When the Honourable Ms Ziemba presented at our spring conference last year, she assured us at that time this would not mean that people who are out there now doing advocacy would not continue to do what they already do. In the example situation that we gave, if there had been an emergency bed an advocate would not even have been involved; this would have been something our agency would have done.
Mr Tilson: But they will now, and there are going to be major problems.
Ms Akande: I'm very interested in your report. I really can't say anything but positive things about the services that advocates provide. I think you would concede that in many ways all of us are advocates, all of us who work with or live next to or are involved somehow with vulnerable people. Whether intentionally or not, we do become informal advocates. It would be our expectation, our hope, that this type of advocacy would continue.
I've asked this question before. An official advocate, an advocate who exists or operates at arm's length, the kind of advocate that O'Sullivan's report emphasized that people outside were requesting and asking for: At what point do you think that type of advocate would be necessary? Use the scenario of the case that you were just using as an example.
Ms Hirstwood: The answer to that question is difficult because it's different for each person. It depends on the individual's level of skill. The example we used was of someone who is quite vulnerable, who lives in either a residential home for special care or a boarding home situation and has no one to support him. They have no informal advocates in most cases because those homes aren't viewed as being the most positive settings by the community around them generally. So they rarely have someone to support them in any other way.
In those kinds of situations, you would need an advocate quite regularly. As a matter of fact, in that situation you would need one right away, because I'm not allowed on the property. As a person providing service, I'm not allowed on the property of that home operator. I have to arrange to meet the client beyond. When I call to set up a meeting, they'll report that the client doesn't want service. However, when I see him at the day program, he is very desperate for service. He really wants some help; he wants to move. But there are limited resources, so there aren't a lot of choices for him to move to.
Ms Akande: So that situation itself identifies the need for the kind of advocacy legislation that we have in place or that we're talking about now.
Ms Hirstwood: Exactly.
The Chair: Ms Hubbert, Ms Hirstwood, on behalf of this committee, I would like to thank you for taking the time out this morning to give us your presentation.
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ONTARIO FRIENDS OF SCHIZOPHRENICS
The Chair: I'd like to call forward our next presenters, from the Ontario Friends of Schizophrenics. I'll remind you 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, would you please identify yourself for the record and then proceed.
Mrs Etchen: My name is Elsie Etchen and I'm the president of the Ontario Friends of Schizophrenics. With me is June Beeby, who is the executive director of OFOS.
OFOS is an organization of approximately 3,000 family members who have direct knowledge of schizophrenia in caring for a family member who suffers from this disease. Many other families with persons with schizophrenia contact our provincial office and local chapters daily.
Schizophrenia is the most prevalent of all psychiatric illnesses and is also one of the most costly. Everyone has a 1% chance of developing schizophrenia, and at this time there are approximately 50,000 people with schizophrenia in Ontario.
Schizophrenia can be treated with anti-psychotic medications, but the common experience we have in OFOS is that many of our family members resist taking medication and avoid going to the hospital because their judgement is distorted and they have little insight into their illnesses.
During the hearings in February and March, a number of family members shared their difficulties in trying to get care for a severely ill schizophrenic relative, and I'm sure you remember their passion and concern. We can't possibly duplicate that here, but they don't want to be pushed aside by another system. They want to be recognized as advocates. They don't want to be steamrollered by a bureaucracy. Often, their efforts have been frustrated because of the restrictions in obtaining care, and these restrictions arise in the Mental Health Act.
We've already discussed earlier today the problem of services. You all saw the tragic headlines about Dominic Sabatino. We're very concerned that the costs of this program not take away from the services. We're also very concerned that crisis intervention services be available to people like that in a community.
In our March brief, we endorsed the principles on which the bills are based, but while we endorsed the principles we found the bills lacking because they did not provide the balance between protecting legal rights and providing speedy access to treatment.
In Bill 74, rights are emphasized and needs and wellbeing are not.
On May 15, 1991, Premier Bob Rae answered our request that families be recognized as advocates for their relatives with schizophrenia by saying, and this is a direct quote from the letter he sent to us: "Your plea for more involvement in the mental health care decision-making process is indeed needed. The full partnership of consumer, family, service providers and medical practitioners is a necessity."
Bill 74 was not written, and has not been amended, to make Premier Rae's suggested partnership a possibility. Among the most important changes that we seek in Bill 74 are: mandatory participation of families in the Advocacy Commission and the appointments advisory committee, if there is to be one; a specified role for the mandatory advisory committee in the legislation itself; a publicly accountable Advocacy Commission; an improved complaints procedure; a definition of capacity to instruct an advocate, and above all, recognition that needs and wellbeing are as important as protecting rights.
I also want to remind you that the provisions relating to access to private homes by advocates remain in the amended bill. The bill gives more access to a private home for an advocate than is presently the case for a police officer. We are asking you to protect the privacy of families in their own homes. There are still ways to protect vulnerable persons, and we've put forward recommendations to take care of this.
With respect to Bill 108, we would say again that some people with schizophrenia agree to be treated, while some people refuse treatment.
We are very pleased indeed to see that our recommendations concerning living wills have been incorporated in this bill as an expedited power of attorney. We propose two principal changes to make it more useful to our families. First, the test of capacity to make such a power should be something less than "capable of personal care." We propose a test requiring the grantor to be able to understand what he's doing.
In the second recommendation, section 50 of the bill, establishing the expedited power of attorney, is somewhat ambiguous in relation to detention. An attorney with a validated power can use the necessary force to take the incapable person to any place for care and treatment, but there is no provision for detaining the person so that he or she may be treated in that place.
The low standard of capacity in the new subsection 47(1) also causes us concern. One characteristic of schizophrenia is that persons with this disease are often able to understand information but are unable to apply it to themselves. We are concerned that persons with schizophrenia, when they grant a power of attorney, may not be able to judge whether the person is capable of exercising that power of attorney.
We are also concerned that there is a higher standard for giving instructions than there is for revoking a power of attorney, and this would seem to allow an incapable person to revoke instructions he made when he was capable. We've explained what schizophrenia is, episodic, so this is a real problem for us: the capability, incapability, capability again, so we propose amendments to the low standard of capacity.
Our great disappointment in this bill is that there are no substantive amendments to the guardianship provisions in sections 52 to 62, and we submitted a paper, Will Guardianship Work for Persons Severely Ill with Schizophrenia?: A Case Study. The approach set out in Bill 108 is not feasible for relatives, yet guardianship may be the only alternative available to families whose incapable relative refuses treatment. Court processes are slow, legal costs significant, and delays in treating a severely ill person almost inevitable and they can lead to disaster, as the newspapers demonstrate.
An expedited form of guardianship seems imperative to our family members in order to prevent serious adverse affects. We believe we understand the temporary guardianship clauses in the bill, and we find that they are not the answer. Families must be involved in addition to the public guardian and trustee and the courts.
The register established in section 75(1) we regard as absolutely essential, but the access provisions in it are a flagrant invasion of privacy of vulnerable people, and these must be tightened up.
In Bill 109: As you heard this morning, we've been a member of the ad hoc group, and we proposed some of the amendments that were dealt with earlier today. Our specific current concerns are the seeming lack of integration with the expedited power of attorney in Bill 108. Bill 108 seems to give powers which Bill 109 takes away. We recommend that the registered power of attorney in Bill 108 apply in sections 12 and 19 of Bill 109 so that a health practitioner will call the attorney when a person is incapable with respect to treatment.
Also of great concern to us is the deletion of provisions for emergency admission to a psychiatric facility that were in the previous draft. This draft may deny emergency admission during an acute psychotic episode when an incapable person does not meet the dangerousness standard of the Mental Health Act. There must be authority to admit in an emergency, and we are urging you to reinstate the original clause.
Another addition of great concern to us is the new section 29.1, extending the powers of the Consent and Capacity Review Board. This section gives the power to second-guess decisions made by the grantor and the substitute decision-maker about what treatment an incapable person should receive and where they should receive it.
A person's decision, made while capable, can be superseded by an appeal which he or she brings when they become incapable. This defeats the whole purpose of the registered power of attorney and therefore we are recommending the deletion of this section.
We recommend that the public guardian and trustee supervise substitute decision-makers, not the Consent and Capacity Review Board. In order to prevent abuse of powers by substitute decision-makers, the role of the public guardian and trustee needs to be enhanced.
We ask you to listen to families of people with schizophrenia and to take into account the unique needs of their relatives when you amend these bills.
I would be happy to answer any questions. We have made more detailed recommendations, and we have drafted some amendments. We know some of our amendments are rather difficult, but we will be pleased to answer your questions.
The Chair: Thank you very much. Mrs Sullivan.
Mrs Sullivan: Because this is such a comprehensive brief, I know we're going to want to take a longer time to review the matters that are considered and put forward in it than is going to be allowed to us this morning.
There are a couple of things I would like the counsel for the Ministry of the Attorney General to respond to, and I'll give him a second of notice. This is not the first brief to discuss the amendments that have been put forward to the role of the Consent and Capacity Review Board in second-guessing a grantor and the substitute decision-maker, and I would like the counsel for the --
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The Chair: I call this meeting back to order. Mrs Sullivan.
Mrs Sullivan: I wanted to give notice to the counsel. I hope he will come to the table in a second to respond, for the record, with respect to that situation.
The other question I wanted to raise -- and I suspect it will probably best be answered by the parliamentary assistant to the Minister of Citizenship -- is an issue that the Friends of Schizophrenics have brought to the committee on page 4 of their paper relating to the composition of the Advocacy Commission.
With the amendments that have been put forward, the wording has changed to require a majority of members of the commission to be vulnerable now or people who have been vulnerable. The Friends of Schizophrenics have rightly pointed out that the definition of vulnerability now included in the bill would mean that a vulnerable person who is now vulnerable would need the services of an advocate.
I wondered if that was the intention of the minister in putting forward those amendments -- or if in fact the wording of the original bills as presented reflected the real intent of the Ministry of Citizenship. I believe Mr Wessenger also commented on this just before the break. It is of some concern not only to members of the committee but to many groups appearing before us. Perhaps we could start with the parliamentary assistant and then go to Mr Fram.
Mr Malkowski: May I please ask our policy assistant to clarify what the intent of the amendment is?
Ms Mary Beth Valentine: The amendment that came forward was intended to clarify with regard to some of the concerns some groups had stated previously. Since the amendment has come forward, as you've pointed out, other groups as well as OFOS have raised the concern. I don't think the wording of the act has actually captured the policy intent. We have drawn this to the minister's attention and I do believe it is an issue she will want to revisit after the end of the public hearings.
Mrs Sullivan: Could we have a commitment from the parliamentary assistant that we might see a proposed amendment from the ministry in this area tabled as quickly as possible, if possible before public hearings are completed? This is not the first group to bring it forward. Members of the committee have raised the issue, including members of the government. We're quite concerned about it and we want to know and be able to see in writing what the real intent of the government is in this area.
Mr Malkowski: This issue will be brought up and discussed with the minister. We'll have to get back to you later.
Mrs Sullivan: I'd like to emphasize that as quickly as possible would be useful.
The Chair: Did Mr Wessenger or Mr Fram want to respond?
Mrs Sullivan: I'd like Mr Fram to respond to the other point.
Mr Steve Fram: As I understand the question, it was whether the decisions of a guardian with the authority to make treatment decisions or a person holding a power of attorney that's been validated could be taken to the review board under Bill 109. Section 12 of Bill 109 says, "Sections 10 and 11" -- that's the rights advice, the appeal provisions -- "do not apply if the person has a guardian of the person appointed under the Substitute Decisions Act, 1992, who has authority to consent to the treatment, or an attorney for personal care under a power of attorney that confers that authority and has been validated under that act."
In both cases the review procedure under Bill 109 would not apply if you had a validated power of attorney, whether expedited or not, or if you had a guardian with authority to consent to treatment.
Mrs Sullivan: I'm going to ask, if I may, the representatives from the Ontario Friends of Schizophrenics if there is any further clarification they want on that point. Again, this is not the only group that has spoken about the possibility of the board second-guessing either the incapable person's decision while capable or the substitute decision-maker's decision.
Mrs Etchen: We are a very small organization, we don't have a lot of money and at the present moment we are without legal counsel because of that. However, we did ask for an interpretation of this clause. The interpretation we got from the legal representative we asked several months ago differs from that of Mr Fram.
The interpretation we had of subsection 29(1) was that a person may apply to the board for a review of a decision to consent on the person's behalf. That was interpreted for us as meaning that an incapable person could apply. Maybe there is room for discussion with Mr Fram or maybe it needs clarification and redraft. Our interpretation some time ago was that an incapable person could apply.
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Ms June Beeby: I want to make the point that it needs to be very clear. This is an important way for us to get help for our relatives. One of the things we've found with the Mental Health Act is that there are different interpretations, whether it's education or legal interpretations, but it's given us a lot of trouble. If we have the same problem with this act as we have with the Mental Health Act, it's going to create a lot of problems for families, so it really needs to be clearly written and clearly understood by those who must implement it, which is families as well as the legal profession and mental health professionals.
Mrs Sullivan: Perhaps Mr Fram could put his mind to reviewing those sections again and determining if indeed there should be an additional clarification so that there is very clear understanding of the nature and intent of that section.
Mr Jim Wilson: Thank you very much for your very thorough brief. It seemed to me that when we last met here at the committee and were talking about people suffering from schizophrenia, and in conversations we've had at committee here with members of the government side, one of the selling points, at least in my mind, of this legislation where it might be helpful to families trying to help a loved one who suffers from schizophrenia was in Bill 109, section 22, emergency admission to a psychiatric facility. I'm very disturbed, as I think you are, to learn that that's been dropped. The reason, which I didn't know and which you've kindly pointed out, was Mr Sharpe's reasoning that it wasn't intended in the original draft.
Do you want to comment on that? You know my family background and involvement in this issue, and to me that was one of the selling points and perhaps one of the benefits of this legislation to such families, in that it gave more teeth, I thought, than the current Mental Health Act.
Mrs Etchen: Frankly, we were very pleased with the first draft of this bill, as you were. We are as anxious as you are about this second round.
The problem with the emergency admission to a psychiatric facility under the Mental Health Act is that it's a dangerousness test. What we are seeking is an emergency; it's a true medical emergency. Schizophrenia is a biochemical disease of the brain. People need emergency treatment of the disease itself, regardless of whether they're dangerous or not. The dangerousness committal criteria under the Mental Health Act can still apply, but there has to be a way of admitting people who are in a case of a medical emergency because of the disturbance in their brain.
June has already referred to the problems of interpretation of the Mental Health Act. The dangerousness test is one of the really significant differences of opinion among the medical profession and the legal profession about what it means. Sometimes we just cannot get our relatives committed because doctors think there isn't a danger. In that case, we need a way of getting the person into the hospital, because it is an emergency. We wouldn't go to an emergency ward, we wouldn't call the police, as Sabatino's brother did, unless there was an emergency, and in many cases the dangerousness test can't be met.
I guess one of our pleas to you is to please help us get our relatives into a hospital in a medical emergency where the committal criteria of dangerousness are not applicable.
Mr Jim Wilson: I very much appreciate your comments on that. Perhaps I could ask the parliamentary assistant, Mr Wessenger, what the ministry's thinking is in this area and whether we can get an assurance that it will very seriously consider the concern that's just been raised.
Mr Wessenger: The intention of the ministry is to not change the existing law with respect to the Mental Health Act. I have some sympathy with the Friends of Schizophrenics in the sense that I think there have been some difficulties with psychiatrists not interpreting the Mental Health Act correctly. That is our position, that they have not interpreted correctly in certain instances where people ought to have been admitted; that the law is fine except that it's a problem of the question of interpretation. For whatever reason, some members of the psychiatric community, or some medical doctors who perhaps are not familiar with the whole question of schizophrenia, don't understand the situation and therefore refuse to admit. Certainly it's recognized that there have been difficulties in this area, but the whole intention is to leave the existing law as it is under the Mental Health Act.
Mr Jim Wilson: If the ministry agrees or feels that the existing law is sufficient, then why -- I think there was recognition in the first draft of this legislation that there is a problem with the Mental Health Act in these provisions. I'm clearly on the record in agreeing with you, Mr Wessenger, at that time that this would be an improvement over the existing situation. Now we've gone full circle, we're back to where we were, no longer a selling feature of this legislation. You've just lost my total support in this particular area.
If your ministry is satisfied with the current Mental Health Act, what then are you going to do for these physicians who are reluctant to apply the dangerousness test as you deem it should be applied?
Mr Wessenger: I think the point has been raised by several people submitting today that it's a question of education. I think that's been one of the major problems with the whole question of the common law that has also come forth in many instances, that there's a lack of understanding by many members of the health professions with respect to the common law situation -- concerning many areas, by the way -- the whole question of consent in the common law. That undoubtedly is the reason for the legislation: to have in effect the common law codified so it's understandable to the health professionals.
Mr Jim Wilson: That wasn't a very helpful response, Mr Wessenger. Perhaps Mr Fram could help us out in this area. I think you know, Steve, that my views on this were that draft 1 wasn't too bad in this area. Can you tell us where you're at now?
Mr Fram: I'm a bit confused about the question. What we tried to do is to address the concerns of ongoing care for people with schizophrenia and other mental disorders, apart from the Mental Health Act. The Mental Health Act has a very limited purpose: It's the exercise of the state's power to confine someone who's dangerous to himself or others. That's all the state power can be used for.
The Friends of Schizophrenics and psychiatrists and people concerned about disorders have said that this is a pretty sad state, where people aren't mentally capable of making choices yet they're not critical enough to get treatment. So the answer in the guardianship provisions is to say that if somebody's not mentally capable and psychiatric treatment is appropriate then the court can make an order in a guardianship order that says -- this is the amendment we proposed in this round -- that admission for psychiatric treatment from time to time may be administered, and the guardian controls.
The other side of that is that if someone has a guardianship order the court can say, "Guardian, as these episodes arise, you as guardian can take the person and have him admitted to a psychiatric facility" -- assuming that the psychiatric facility will take him -- "for care and treatment that you've ordered."
Theoretically then, somebody could be left in a psychiatric facility on the word of his guardian. So the corrective provision that goes with that -- or just the watchdog provision, because there's no provision for review every three months or every six months -- subsection 29.1(1) of the Consent to Treatment Act, says, "A person may apply to the board for a review of a decision to consent on the person's behalf to the person's admission to a hospital, psychiatric facility or health facility referred to in section 19 for the purpose of treatment."
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If you're stuck there for four or five months and you think that the time's over and you want somebody to review whether that's the appropriate placement, then you can apply to the review board to have a determination if that's appropriate or continues to be appropriate. That's how the two provisions fit together, but the design of this is to shift from the Mental Health Act being the sole means of addressing the needs of people who have episodes to the treatment taken from the other point of view, not society's needs to protect but the individual's need for treatment. That's where guardianship and validated powers of attorney and powers of attorney come in.
Mr Stephen Owens (Scarborough Centre): I have a question to the ministry on the Substitute Decisions Act. In terms of the recommendation regarding the addition of the word "understands" under subsection 47.1(1) and paragraph 50(2)4, has there been any thought given that in fact this may be a good way, in the first instance, to tighten up the language and, in the second instance, bring the language to its natural conclusion? Is there anybody here? Who's doing the Substitute Decisions Act?
Mr Fram: If I understood the question correctly, you're referring to the suggestions by the Friends of Schizophrenics to alter the definition of "capacity" to make it "power of attorney."
Mr Owens: That's right.
Mr Fram: Of course I've just seen it this morning. Let me try and tell you what we're trying to balance. We're trying, with the definition and the change of definition, to be able to reach down in the case of developmentally handicapped people, to be able to get as many as possible to be able to choose who will be their substitute under a power of attorney.
Everything we do to tighten the definition of capacity to make the power of attorney deprives all those people who are moderately to seriously developmentally handicapped of the right to choose somebody who will be involved in their lives on an ongoing basis.
My first-blush look at this is to say we'll take a look at it, but it seems to me that the very tightening of the ability to make the power of attorney will deprive an enormous number of people of the ability to choose someone to act for them and force numerous families to go the guardianship route where it's unnecessary and inappropriate.
Mr Owens: My question is to the presenters with respect to your comments on guardianship. I understand where you're coming from, and I've spoken with Ms Beeby on a number of occasions. What I'm trying to do is find a comfort level. Where do you balance the ability to put people under guardianship in an easier manner, which may or may not lead to abuse, versus a tighter and perhaps more onerous process, as you seem to feel we have in this piece of legislation? Do you have any suggestions as to how we can balance those two needs?
Mrs Etchen: We thought we had tried to strike a balance. We understand the problem Mr Fram has mentioned that there are people who are developmentally handicapped who may need to have someone reach down to their level to make the power of attorney or the guardianship order. But we have the same problem. There are many people with schizophrenia who, once the first episode is over, become a chronic case and their capacity never returns to a substantial level. Many of these people too will be anxious to take advantage of this section, the power of attorney for personal care.
What we're concerned about is that the disease is a fluctuating disease, so there may be people who are capable now, who give instructions to the person who has their power of attorney, but later on in an episode they become incapable and they revoke those instructions. They still have the capacity to revoke them. We're concerned about their not being able to have the insight into their own disease to understand what they're doing.
This seems to give an incapable person the capacity to overturn his capable wishes. So what we're suggesting is that the test be that they understand what they're doing. We think that gets to the level of reaching down to the incapacitated person to some degree, to the person who is developmentally handicapped or the person with schizophrenia who has not been able to rise very substantially back to a level of capacity again. We think, at least we hope, we've reached a compromise.
Mr Owens: Thank you.
The Chair: Thank you, Mr Owens. Mrs Etchen, Ms Beeby, on behalf of this committee I would like to thank you for taking the time out this morning for your presentation.
This committee stands recessed till 2 pm this afternoon.
The committee recessed at 1157.
AFTERNOON SITTING
The committee resumed at 1414.
CAMPAIGN LIFE COALITION ONTARIO
The Chair: I call this committee back to order. I'd like to call forward our first presenters for this afternoon, the Campaign Life Coalition Ontario. Good afternoon. As you realize, 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.
Ms Clare Dodds: My name is Clare Dodds.
Mr Kurt Gayle: My name is Kurt Gayle.
Ms Dodds: Campaign Life Coalition Ontario is a provincial organization working in the political arena on the issue of euthanasia. We are pleased to be able to present our concerns on the proposed legislation.
We oppose these bills in their entirety and gave our reasons in our original brief to this committee in March. The amendments to these bills do not even begin to deal with the substance of our objections. I will summarize our main objections.
The first is the role of the family. The bills diminish the rights and responsibilities of family members when it comes to ethical decision-making regarding vulnerable persons and incapable elderly patients.
Second is the patient-doctor relationship. The existing legal and ethical parameters of the patient-doctor relationship in the province of Ontario have met the health care needs of the public. An underlying premise of the proposed legislation is that doctors, unless provided with freedom from legal liability, routinely overtreat their patients. There is virtually no evidence to support this premise.
Third is the right to refuse treatment and informed consent. Patients already have the right to refuse medical treatment under common law. Also, how can one give informed consent in a living will about some future unknown medical condition, under unknown circumstances, at an unspecified age and location, with no documented health history leading to this particular event and no opportunity for prognosis?
Fourth is a formula for cost containment. These bills are a thinly disguised mechanism to reduce patient services and cut health care budgets. We strongly object to such cost containment measures being practised on some of the most vulnerable members of our society.
Fifth is the right to nutrition and hydration. Treatment is defined so broadly in Bill 109 that it could be interpreted to include nutrition and hydration. This could lead a guardian or attorney for personal care to request that food and water be withdrawn, in effect permitting the patient to die from starvation. Proponents of euthanasia consider the withdrawal of food and water to be the first step towards active euthanasia.
Sixth is living wills. The practical effect of Bill 108 is to introduce living wills to Ontario. The underlying premise of a living will is that doctors, unless threatened with legal action, routinely overtreat their patients. It undermines the professional judgement of the physician in that it compels the doctor to act in a certain manner dictated by a written document that could not possibly encompass all scenarios.
I will expand on two of the six points. First, living wills: Bill 108, subsection 47(5), will legalize living wills in Ontario. Why should we be concerned about that? I'll answer that question by reading a letter which appeared in the Toronto Star not long ago.
"Several bills before committee at Queen's Park would for the first time legalize living wills in Ontario.
"A powerful lobby is promoting living wills as a measure to improve communication in health care and to protect each person's right to self-determination.
"Of course, in reality few of us have ever known -- or will ever know -- a terminally ill person kept alive against his or her will and most of us and our families communicate with our doctors just fine.
"But we are aware that drastic measures are already being undertaken to cut health care funding. We also know that in the next 10 years the percentage of the population over the age of 65 will increase by 55%.
"Living wills are a foot in the door for future justification of drastically reduced levels of health care, and early deaths for many of our most vulnerable, elderly, poor. Succinctly put, living wills are a forerunner of euthanasia in Ontario!"
Second, I'll deal with cost containment. "Improving communication in health care and protecting each person's right to self-determination" are some of the high-sounding phrases used to promote the living wills and advanced directives which would be legalized by these bills. However, the real underlying reason for the proposed legislation is cost containment.
In the United States, when the patient self-determination act became federal law eight months ago, the US federal government was really putting pressure on health care providers to put pressure on citizens to relinquish medical care. US government studies have estimated that the act could trim billions of health care dollars in the US, thus clearly identifying the act as the cost containment measure it is.
Here in Ontario, in this era of economic downturn and government efforts to control overall expenditures by cutting health care costs, dressing up living wills as enhancing patient self-determination and improving communication is much like the government of Ethiopia pushing crash dieting to improve people's health. Posters in Addis Ababa might exhort the citizenry to, "Live healthier on 600-calorie-per-day diets!"
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We need to be honest with one another. This is 1992 and we have three important factors coming together: First is the economic downturn and less government money to spend. Containing health costs is viewed as part of the government's overall cost containment program. Second, the elderly, as expected, consume per capita a disproportionate amount of the health dollar. Third, the percentage of elderly people in our population is rapidly increasing.
Points 1 and 2 require little elaboration. Point 3 -- the rapid greying of the population -- can best be illustrated by referring to an article from the Globe and Mail from April 2 of this year, "The Greying Of Ontario."
"Over the next 10 years, Ontario will have a 55% increase in the number of residents over age 65, or about 1.5 million people, according to figures in a study by the city of Toronto's long-term reform committee.
"Over the next 30 years, the number of people over age 85 will grow by 161%, and the proportion of Ontario's population requiring long-term care will more than double....
"So what's the point? The report says that long-term care reform has to be a major priority of government of all levels over the next few years if society is to cope with an older population."
How will the government of Ontario cope with the increasing percentage of our population over the age of 65? Other than the current living will legislation, what long-term care reform does the Ontario government have in mind? Let's examine another Globe and Mail article that appeared one week ago today.
"Despite waits ranging from several months to more than two years at nursing homes, chronic-care hospitals and homes for the aged, the cash-strapped Ontario government has frozen the number of long-term care beds in the province.
"A recent survey found that 4,300 seniors are on waiting lists for the approximately 170 institutions in the Ontario Association of Non-Profit Homes and Services for Seniors
"The non-profit association projects that by 2010, under the policy of zero growth in long-term care facilities, there will be fewer than four beds available for every 1,000 people over 65." If the last sentence doesn't shock us, it should.
"A seniors' coalition that recently conducted public hearings on reforming long-term care was told that chronic care beds are less than half the cost of acute care hospital beds.
"Yet chronic care hospitals are closing beds because they can't meet expenses because of a cap in funding from the deficit-plagued NDP government.
"The Sisters of St Joseph, who run Providence Centre in Toronto, are phasing out a 54-bed chronic care wing even though about 150 people are on a waiting list to enter the hospital."
Mr Murray Fisher, who is the son of an elderly woman who has been waiting for two years for a chronic care bed, "calls the lack of bed space a crisis and wonders why the government doesn't build more homes for the aged.
"'The geriatric problem is certainly increasing, and it's going to be far worse in 25 years. I'm 61. So I'll be in there myself if I make it.'"
Everywhere we turn, the cost containment policy impacts disproportionately on the elderly. If the present Ontario government were genuinely interested in providing complete health care for our senior citizens, it would certainly, among other measures, be funding a rapid expansion of chronic care beds in Ontario. The fact that they are not leads us to conclude that they have few plans for the elderly other than persuading them into accepting drastically reduced health care through the use of living wills.
Just to repeat, we need to be honest with one another. Living wills would have our seniors volunteer to receive less-than-standard medical treatment in order to cut health costs. Whether in the US or Ontario, containing health costs is the real reason for this type of legislation.
The firm position of Campaign Life Coalition is that these bills are totally unacceptable. The amendments offered have not substantially affected our basic objections. We live in a wealthy society, compared with many around the world, and we must be willing to sacrifice hundreds of non-essentials and luxuries before we ask even one of our vulnerable elderly to volunteer to die.
Mr Curling: Thank you for your presentation. I think all presenters who come here have their point of view because that's what the committee's all about, to look at the different points of view.
Putting aside that this government is strapped for money -- maybe all governments in Canada these days are strapped for money to fund programs adequately -- one of the areas of course that all governments have recognized, even the Liberals when they were in power, is the escalating costs of health care and that something has to be done. The NDP government has to wrestle with that as much as the Liberal and Conservative governments had to wrestle with that.
Would you say that there are vulnerable people in our society who need to be protected and that there is legislation that should be in place to do so? In other words, whatever is on the books right now needs to be improved. What I'm getting from you, too, is that the entire bills should not be here at all because that's not where the emphasis should be. Am I reading you right?
Mr Gayle: That's correct. I believe it would be fair to say we reject all the bills categorically and totally. We don't think they're amendable at all. We don't think the amendments offered do what they claim to do. We think the problem that will face elderly people in our society in the future is not to be defended from having too much health care but to be defended from having not enough health care.
Somehow the media, particularly in the United States, has cooperated with the notion of saying that there is a significant number of people who are going to be wired up, tubed up and kept alive against their wishes and that we need legislation to protect them when in fact the opposite will increasingly be the case. Budgets will be cut and priorities will be set which ignore health and education increasingly.
What disturbs us particularly is that this government, which is known for having very progressive social ideas on many issues, has allowed itself to be hooked up with what is an American phenomenon. The health care system in the States -- and as a draft dodger from 25 years ago, I know -- is a disaster. We don't need the American health care system.
In order to contain costs in the States, they have not just two tiers; they have three and four tiers. Elderly people and people without insurance are prevented from getting adequate health care. The legislation passed federally and in the 50 states is meant to enshrine a system where a patient who comes to a hospital is presented with documents to sign and really signs off his or her right to have adequate health care.
I'm not suggesting that anyone in this room is motivated by those motivations we see from the States, but it's very funny to see the NDP government ape an American plan without having, we feel, any legitimate cause to do so.
Mr Curling: I've come to some of the conclusions you have come to, too, that the NDP government will talk the talk but it really can't walk the walk. We have realized that their intention of course is to look out for the disadvantaged and they may be the only ones who can do so. We have shown that position after position has been reversed because they're not capable. In the meantime, as the opposition we are here to make sure that the place doesn't go amok with their manner of governing.
I feel there has to be a bill or legislation to protect the vulnerable, but I'm still getting from you that it's not needed. There are families and friends who are assisting some of the vulnerable people along in society. Do you feel the laws that are on the books now are quite adequate?
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I asked the question before, but I want to see if those people in that system need any support -- in other words, proper laws -- to give them that kind of support along the way. I'm not saying that this one they have here is the correct one, because many of the people come before us and say, "It needs a lot more improving, and as a matter of fact there's not even a cost factor to it." The government doesn't even know what it's going to cost. Again, is it necessary that we have a bill, a law, on the books that will support those families and friends who are assisting the vulnerable people?
Mr Gayle: I understand your question, Mr Curling. It is our feeling that this legislation will not do that job, that it needs to be begun from scratch. This is deficient from the ground up, in our view, and this will not do that job to the extent that it needs to be done. I suppose our underlying position is that the existing common law is adequate, and if it ain't broke, don't fix it, and we don't think it's broke.
Mr Tilson: All of these various pieces of legislation give medical people -- doctors, nurses, anyone in the medical profession -- all kinds of more responsibilities and duties. Should there be any provision in any of the bills that protects doctors, nurses, whoever, from frivolous claims that they aren't making their decisions properly? The medical profession is being sued left and right, sometimes quite justifiably and other times not, but it seems to me when you create all this administration -- some of it's good, a lot of it's bad; at least from our perspective, it's not good -- but there doesn't seem to be anything that protects anyone in the medical profession from frivolous claims. Have you any thought on that?
Mr Gayle: Yes. That underscores our basic contention that what you have here is an American piece of legislation that's been warmed over and redressed for Ontario. My brother's a practising physician in West Virginia, and his malpractice insurance is sky-high. There is a problem with that whole phenomenon, and ambulance-chasing lawyers. The Americans have dug them a hole, and I don't know how they're going to get out of it.
The situation in Ontario is dramatically different. Malpractice suits are not only manageable; the courts deal with them differently. We have a whole different practice and experience.
Again, the thing I think should be troubling is that that sort of approach, suing doctors frivolously, will be imported into Ontario the closer we ape legislation and patterns from the States. I share your concern that, should that arise, we are in deep trouble where we then want to put structures in place to protect doctors from that.
Mr Tilson: In your studying of other jurisdictions, are there proposals in any of the American states or any other jurisdictions where legislation is being put forward to protect people in the medical profession from sometimes literally wacko claims?
Mr Gayle: I think the AMA is fighting the lawyers state by state, and I don't know if it's having any real success. I'm not rooting for either organization in a certain sense.
Mr Tilson: The second question I have has to do with the power of attorney legislation. People in the legal community are telling me that if anyone comes into their office and asks an opinion whether he should be an attorney and act for people who have either physical or mental problems and he's going to act on their behalf, they're saying: "We recommend that you don't do it because of this legislation. You're opening up the door to be sued left and right because of all the many, many requirements that are being put on you by this legislation." Have you any thoughts on those allegations?
Mr Gayle: The level of bureaucracy in the proposed legislation is astonishing. I think not only the $20-million to $30-million figure to fund it has been cited, but I think it will create a virtual army of people -- hospital people and doctors and lawyers -- to interpret what the particulars of this legislation mean.
Quite aside from that, the legislation -- I think inappropriately in Ontario -- removes doctors from responsibility, removes health care people from responsibility, in ways that are inappropriate. With a vulnerable elderly person in a hospital bed, I think we still, as a society, want to say that that person, unless terminally ill, is entitled to all normal health care. I guess the medical profession is happy about this. It seems to unplug them from responsibility, again in inappropriate ways.
Mr Tilson: Again, I'm looking specifically at the person who's been given a power of attorney, not necessarily the medical people -- the layman who is assisting people. I've sort of changed to another topic from my first question. The legal people are saying, "You're crazy to act as an attorney because of the many restrictions that are being put forward in these bills."
Mr Gayle: The legislation is so new in most jurisdictions in the States and certainly in Canada -- it's not yet passed into law -- that it would seem that there would have to be that concern that there could very well be an explosion of civil litigation, questioning the role of advocates, questioning the role of people with powers of attorney for health care, the way they exercised them, that they did it in a fashion that didn't represent the --
Mr Tilson: If I could ask one further question, and it has to do generally with your presentation, and that has to do with the whole subject of what rights I have, whether I'm an elderly person or whether I've had a stroke and I can't perhaps communicate. I raised the question this morning about the parents who have the handicapped child and are fearful of all the funny pieces of paper they're going to have to complete now and fearful of watching advocates come and of these agencies that are going to be coming and watching them, and all they're trying to do is to raise their handicapped children under very difficult situations.
How far should a government go in getting involved? At the same time I'm sure that we can all see examples where vulnerable people have been taken advantage of. But how far should a government go in getting involved in all this?
Mr Gayle: In our reading of the proposed legislation, the bureaucracy set up and the procedures to go through and the interpretations and meeting back and forth will be bewildering for a lot of lay people such as us. We feel the best approach would be to scrap all of the proposed bills and to start from the beginning again.
Again, with all respect to the people assembled here, this is very, very bad legislation, and I think from a point of view of history, you will be looked back upon with disfavour by subsequent generations. This is something that will take us into an area where we haven't gone before and it's very contentious and it's full of moral and ethical dilemmas and it's just a mistake to pass this legislation.
Mr Malkowski: You know that for many years vulnerable people have experienced neglect or abuse, and the O'Sullivan report strongly recommends the establishment of an advocacy system. Do you think it is important to have legislation that protects a vulnerable person from neglect or abuse?
Mr Gayle: I agree with the principle you've raised. It's extremely important. One of the things that feels so good about being a Canadian living in Ontario is that we, as a society, are on record for several decades back as agreeing through our medical health care system and in other social ways to protect all of our citizens, and I agree that it would be very important to have such legislation.
Our feeling, however, is that this legislation creates more problems than it solves, and certainly the submissions you have heard before from people who are advocates for vulnerable people underscore that point.
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Mr Malkowski: Do you perhaps have specific recommendations you could suggest that would improve the legislation?
Mr Gayle: As I say, and I hope my remarks are not interpreted as being arrogant in any way, our organization feels that the legislation is irredeemable, that it should be scrapped and that the process should begin again.
Mr White: I just have a couple of brief questions. You made some very interesting points with regard to the living will and of course the comparison between our own legal system and that in the United States and the health care system, the differences and the dangers of becoming more like the American systems.
Mr Gayle: A very frightening danger.
Mr White: I want to pick up on the first point of your objections, which was in regard to the role of the family. My focus here will be on Bill 74. I guess what impressed me with Bill 74, in the amendments, is section 15.2, where it specifically says that the advocate shall -- not may or might or could possibly, but shall -- ask the vulnerable person whether there are family members or friends who could provide assistance and the advocate will assist family members and friends in their efforts to provide assistance to that vulnerable person. In other words, in law the role of the family seems here, to my mind, to be enhanced. It specifically says that the advocate has to, wherever there is a family, wherever there are close friends, use those people to assist that vulnerable person. Of course, with vulnerable people we are talking about a range of people, not people who are terminally ill; in fact, most of them I would think would not be. But wouldn't you consider that to be an enhancement of the role of the family in these situations with vulnerable adults?
Mr Gayle: This committee deserves the credit of having gone through the presentations made back in the spring and having responded to them. With Bill 74, section 15.2, Bill 108, subsections 32(3.1) and 32(3.2), subsections 63(4.1) and 63(4.2), and Bill 109, subsection 16(5.1), we sat down and debated for a long time these matters, and we feel there was a genuine effort on your part to meet some of the objections of some of the presentations that were put forward.
On the whole, though, after lengthy discussion, we found they really didn't address in a significant way across the board the basic concerns our organization had. Again, I don't wish to appear ungrateful. You raised the point and I'm acknowledging that these were changes in response to earlier points made some months ago, but we don't feel they are adequate. They don't address the underlying difficulties with these bills.
Mr Wessenger: I'd like to make a couple of comments. First of all, I think there is a misapprehension about the reason for this legislation with respect to living wills. This legislation has been under way for the last 12 years approximately, through three different types of government, and the key issue is recognizing the autonomy of the individual in determining his own health care. That is the basic premise of the legislation.
I'd like to comment on the other aspect. Mr Tilson somehow indicated there was no protection for liability in this bill. There are two sections of the Consent to Treatment Act, section 24 and section 25, which deal with the matter of protection from liability.
First of all, with respect to medical practitioners, "If treatment is administered to a person with a consent that a health practitioner believes, on reasonable grounds, to be sufficient for the purposes of this act, the health practitioner is not liable for administering the treatment without consent."
Similarly, if a medical practitioner refuses to administer based on "believes, on reasonable grounds," he is again exempt from liability. If the practitioner administers treatment under the emergency provisions, he is not liable for liability at all. In addition, an individual -- not a health practitioner -- who "gives or refuses consent to treatment on another person's behalf, acting in good faith and in accordance with this act, is not liable for giving or refusing consent."
I think a fair amount of provisions in the act cover the question of protection from liability. I just wanted to clarify that.
Mr Gayle: If I might just respond to the first of the points -- I know it wasn't in the form of a question -- in our view it's not accidental that though aspects of this living will were considered worthy of discussion for perhaps a dozen years before this legislation was put forward, it wasn't acted on.
We have documented proceedings from euthanasia organizations in Canada and the States going back some years. Not only were they not making headway; they said they needed to start with living wills. They felt very stymied because they could get nowhere with living wills. They said what they needed was a recession. We've got a recession and you're moving on it. You weren't moving on it 12 years ago, or 10, or eight, or six. You're moving on it now.
The Chair: Ms Dodds, Mr Gayle, 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
CHILDREN'S AND YOUTH INSTITUTIONS
ONTARIO ASSOCIATION OF RESIDENCES FOR TROUBLED YOUTH
The Chair: I'd like to call forward our next presenters, from Ontchild and the Ontario Association of Residences for Troubled Youth. Good afternoon. Just as a reminder, you'll be allowed a half-hour for your presentation. The committee would appreciate it if you keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Ms Claire Braseliten: Claire Braseliten.
Ms Julie Ann Wolfe: Julie Ann Wolfe.
Ms Andrea Rifkin: Andrea Rifkin.
Ms Gita Schwartz: Gita Schwartz.
The Chair: Please proceed.
Ms Rifkin: Introducing OARTY, the Ontario Association of Residences for Troubled Youth is a provincial network of organizations providing residential programs in treatment settings. These include group homes, specialized foster care programs and other residential facilities. All OARTY members are funded on a per diem basis and are licensed and regulated under the Child and Family Services Act.
Formed in 1985, OARTY has a membership of over 40 agencies. Together we represent over 800 beds across Ontario. We care for a wide range of children. Some of these children are developmentally challenged, physically and sexually abused, emotionally disturbed, medically fragile children, children with autism and children who are hard to serve. We serve children of all ages and aim to prepare them for independent adulthood where possible.
Our major areas of concern are the quality of children's services in Ontario, standards of care, staffing needs to include training and upgrading, investigations of abuse and safeguards for children in residential care. In that our children represent our future, we are deeply committed to their health, safety and welfare.
Ms Wolfe: Introducing Ontchild, Ontchild is an acronym for the Ontario Association of Children's and Youth Institutions. It is a non-profit charitable organization formed in 1976 and dedicated to the services of children and youth in Ontario. Our Ontchild association represents over 40 organizations across the province, member agencies whose responsibility is to serve children and youth in both residential and non-residential care capacities.
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All Ontchild agencies are regulated under the Child and Family Services Act of 1984 and are transfer payment agencies of the Ministry of Community and Social Services. All Ontchild agencies are non-profit and governed by local community volunteer board members.
Our commitment is to improve the quality of care of children and youth in Ontario, and our work is with more than 10,000 young people on an annual basis. One of Ontchild's goals is to respond to and make recommendations on government policies affecting children and youth, based on the input of our member agencies.
Regarding these proposed Bills 109 and 110, our member agencies across the province have expressed genuine concern. We appreciate the opportunity to come before you today to make this submission to you, the Ontchild/ OARTY joint submission to the standing committee on administration of justice regarding the proposed consent to treatment legislation and amendments to the Child and Family Services Act, Bills 109 and 110.
Ontchild and OARTY represent 90 organizations across Ontario that provide both residential care and non-residential services to children and youth in this province. We serve vulnerable and troubled youth, developmentally challenged youth and the medically fragile child. We serve over 12,000 clients annually.
Ms Rifkin: Together we represent the largest segment of short- and long-term residential care providers for children in Ontario. Jointly, our members' services provide approximately 1,600 residential beds through our residential programs.
Ms Wolfe: The children in our care have many difficulties. They include a history of physical abuse, sexual abuse, drug or alcohol abuse, as well as learning disabilities, severe emotional problems, major dysfunctional families, developmental delays, and often they have numerous placements within the residential care system. Many of these children come from backgrounds of both social and economic adversity and are often hard-to-serve children with many layers of interlocking stressors. The number of stressors in an individual client's history bears a direct relationship to how vulnerable that child is. Often, the typical child in residential care has lived with mental illness, poverty and violence.
Ms Rifkin: In allowing children of any age the right to refuse consent to treatment, as the legislation proposes, our whole sector will be thrown into an impossible situation. Indeed, our fundamental ability to do our work is threatened. Staff in our agencies whose responsibility it is to care for these children are rendered impotent. For example, children who come into care are obliged to have medical and dental examinations. This is the current law under the Child and Family Services Act. A child will now be able to refuse this requirement. How do we meet our legal obligations under this circumstance?
Ms Wolfe: Another important question is that of immunization. Under the current law, we are obliged to ensure the immunization of our children. There are both legal and social consequences if this is not done. We cannot do this if a child has the right to refuse treatment, and a child may refuse simply because he or she hates needles. I know I do. Again, we are in an impossible situation.
Ms Rifkin: On a more simple level, children often get sick with a variety of ailments. Can they now refuse to see a doctor when they have an ear infection? An ear infection could lead to severe loss of hearing if unattended. Like a toothache, a child who hates the dentist can easily refuse treatment, knowing full well the consequences of such an action. Or, if a child is a diabetic, can he refuse his insulin shots? The list is endless and we will be put into a position where we will not be able to provide the best care for the children in our charge.
Ms Wolfe: All of our organizations combined look to improving the wellbeing of the children in our care. These children come to us because they have been sexually and/or physically abused, because they have been terribly neglected both physically and emotionally, because they have severe behavioural problems and because their parents can no longer care for them. Whatever the reason a child is in our care, we make plans to help him get better or to improve the quality of his life and to lessen his individual vulnerability. Our member agencies have a lengthy history in Ontchild and OARTY of successful outcomes under the existing legal framework.
Ms Rifkin: Our work is augmented by psychiatrists, psychologists, social workers, nurses, child care workers, kinesiologists, therapists and many more health care professionals, either on staff or as consultants. To the extent that it is possible, we do include our children in developing their individual plans of care. To allow them the option to refuse treatment by a psychiatrist or any other professional, we are stopped from doing work we think is essential for the wellbeing of the child. Children in care are often troubled and vulnerable and cannot make good judgements about their own care. To allow them this right to refuse is to deny them protection and the opportunity to live a normal life.
Ms Wolfe: It is very common for children in residential care to experience acute depression as a result of the separation from their families and from their situations. The very vulnerability of these children and youth overrides their ability to decide for themselves what is best. It is often the case within all our agencies that children at any age simply do not know and are not able to comprehend the options, nor the implications of those options, that are available to them in order that they may receive assistance or treatment that will benefit them.
Ms Rifkin: The issue of children's rights becomes fundamentally conflicted and confused with the issue of responsibility which care givers are mandated to provide according to the existing legislation. This conflict must be resolved before any amendments to existing legislation can be addressed.
Ms Wolfe: If the new legislation is passed as stated, a capable child may withdraw consent to treatment in progress. Often children will resist therapy in progress. For instance, a child is reaching a point which is painful but in fact is necessary in coming to terms with sexual abuse by a parent. To stop the work at that particular time is not useful nor beneficial to the child. We as adults all know that some things are very difficult but must be faced. How does a 12-year-old know this? They will now be given the right to refuse to continue seeing a counsellor and sever the therapeutic process. Again, our ability as care givers to enact care and nurturing is severed with this additional right to withdraw consent to treatment in progress.
Ms Rifkin: We also feel strongly that the emergency treatment provisions in Bill 109 are inadequate. The legislation states that if a capable child is conscious in an emergency situation and frightened of a procedure, he or she can refuse treatment. A life-threatening situation must be dealt with immediately. To wait until the child is incapable or unconscious before making a life-saving medical intervention is negligent on our part as care givers.
Ms Wolfe: To allow children under 16 to refuse treatment plays havoc with the residential care system as well as with the adjunct systems with which our agencies interact on a day-to-day basis, and by this we're referring to police and hospital medical treatment. We are no longer professionals administering treatment plans, as chartered by the CFSA of 1984; we become babysitters with no ability to shape the experiences of these youth.
Ms Rifkin: The Child and Family Services Act distinguishes between children and adults. By enacting this proposed legislation and the corresponding amendments to the CFSA, we are not preserving children's rights to be children, but we are defining them as adults.
Children are in care because they are damaged or because their parents can no longer look after their needs. These children require protection and guidance. By giving children this kind of control and decision-making responsibility, we are abdicating our responsibilities as adults and are undermining the care giving system. We are asking children to make adult decisions, which they are not capable of doing. Above all, children should be allowed to be children.
Ms Wolfe: We respectfully request that our positions be taken into account and that you will reconsider the passage of Bills 109 and 110 as they are currently presented.
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The Chair: Thank you. Questions and comments.
Mr Curling: I want to thank you for your presentation. I've heard you; I hope the government is listening, because I've had the experience of visiting some of those residential homes that care for young people. I have, as a layman, watched the manipulation by those kids, how they understand their rights, as they would say, and who should visit and when they should visit.
In part of your presentation you said, "Our work is augmented by"; that's a nice word about psychiatrists and psychologists and social workers and nurses and child care and therapists and so on. Sometimes I wish that when my kids were growing up I had all that support to call on from time to time to assist me. I think there are layers and layers, and people like yourselves are working within that system. Now here comes another -- I call it the big daddy -- coming over to tell you, "You may not do that," or "You may do so."
It might be helpful if a committee like this would visit some of those homes. Even visiting a home or two a day, you may not see some of that manipulative behaviour -- I say that because I have watched them -- but it may be helpful if they visit the institutions or visit the homes.
My question to you is, how would you feel if this legislation exempted places like yours? Keep in mind that children at home might refuse treatment; my kids might have, but they're not 14 any more. If this law exempts your homes, should they exempt private homes too? As you came to represent this area, you may answer just the part about you: Should you be exempted from this law?
Ms Braseliten: Our concern is certainly for the youth we represent in our organization. However, we feel that all youth and all children shall indeed be treated as children and should not be given the responsibility to make adult decisions. Although I represent the children in youth institutions, as a parent of an 8-year-old I cannot support a bill which would give my son the right to refuse treatment that I, as a parent holding his best interests in mind, deem necessary and effective.
Mr Curling: But I want to put the question: In your professional area, as I said, you have layers and layers of professional support. Because they have recognized that these children are abused emotionally, sexually, physically, in all ways, and the children's aid people have put them in homes where they have those supports, do you feel you should be exempt? I'm not speaking about your personal home now but about those homes. Should you be exempt from this?
Ms Wolfe: I don't think you can group the children in our care as being completely different from all other children they come in contact with on a regular basis. In fact, the mandate of many of our agencies is to try to establish a care plan for the individual child which has an eventual outcome of being able to cope in society much the same as every other child. So to distinguish our children as being different and therefore needing a different set of laws, no, we wouldn't support that.
Mr Curling: Just a last comment: They are different, and that's why they are there.
Mrs Sullivan: As you know, we have had some considerable difficulty in dealing with the age issue with respect to this legislation, the question of whether the predominant test should be the best interests of the child or the right of the child to participate in and in fact make his or her own decisions, which itself involves the question of maturity versus capacity.
I think that's where there's a fundamental problem here. We certainly are, and I personally am, sympathetic to the issues of children's rights in being able to obtain medical counsel in matters, say, associated with counselling relating to sexually transmitted diseases or other issues young people may want to receive that medical counsel on and in fact may have the maturity and capacity to make decisions on about how they wish to be provided for within the context of medical treatment.
I think there are several themes emerging as we go through this second round of hearings. I hear, by example, some melding of interest between the positions of the Ontario Medical Association and the positions of the advocacy coalitions with respect to the definition of treatment by controlled act where a person, of whatever age, may be determined to have the capacity to make the decision in a different way from the age scenario, which would help us with young people whom we want to protect by being able to give them advice, say, in the sexual area, but in other areas as well.
Mr Curling has asked you if you feel your agency should be exempted from the bill. There may also be another route, as well as the controlled act route in the Consent to Treatment Act, by including the Child and Family Services Act with special provisions under Bill 110. I think there's no question that the Child and Family Services Act is directed to children with special needs and the care of those children and that perhaps Bill 110 is your appropriate place to ensure that the CFSA is not interfered with through Bill 109 and that the children who need that special care will continue to get it with the thoughtful provisos of the CFSA. Do you think that may be an alternative?
Ms Braseliten: Our position here is that we feel the children who require treatment should be allowed to receive the treatment, that children in our programs are not in a position to make decisions under the age of 16, so we would support the regulations as stated in Bill 74.
Mr Tilson: The one line I appreciate the most in your presentation is on page 7, the last two sentences, which say: "We are asking children to make adult decisions, which they are not capable of doing. Children should be allowed to be children." That probably sums up your entire presentation.
You look at other groups -- and the only one I can think of is the courts, for example -- that spend so much time trying to protect children from their parents, protect children from family members, non-family members. Their concern is whether they understand what in the heck's going on or whether they understand the nature of proceedings that affect them. They spend so much time, yet they're being enabled to make decisions which, if you quoted those two sentences, they really have no business making those types of decisions. Is that really the gist of your presentation, that really children have no business making these types of decisions?
Ms Schwartz: Yes, I think that's absolutely correct. We're really concerned, especially with the vulnerable children we deal with, that they have an opportunity to be protected and taken care of. That doesn't exclude the fact that we all are very concerned about abuse and safeguards and so on, and we address those issues as well. The system is not perfect. But to make children responsible for so much does not allow for them to really be nurtured and to grow in the way children need to, so yes, it really does. We can go into a lot of the technical details, but that definitely sums it up.
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Mr Tilson: I'd like to ask a question to Ms Wolfe, who is billed as being a volunteer board member. We've been trying to get information out of the government as to what this whole mess is going to cost the taxpayer, what it's going to cost us, all of these pieces of legislation.
You're a member of a volunteer group. Have you analysed what this means to you, as far as getting funding, as far as the increased responsibilities, the cost? There has got to be all kinds of bureaucracy that you are going to be obliged to get into which you aren't into now, whether there are additional bodies you're going to have to hire. Has your group or have the people whom you deal with made any analysis as to what this is going to mean financially to your group?
Ms Wolfe: Our group in Parkdale is actually going to a meeting this week to discuss a lot of the different options and ramifications that may come into our whole program of care in Parkdale residential facilities if this does go through, because it's really hard to put a dollar figure on it. But when you've got a computer system that you fund-raised for and that is full of process and interrelation, government agency data that you've formulated -- really only since 1984, when the CFSA that we're dealing with now; I mean, it is only eight years new really, and we're trying to change it again -- to go back in and reformat the whole system, our agencies in residential care operate along a whole guideline of process for intake, for treatment, for treatment plans, for children exiting the program, it's really incredible.
As a volunteer on a board charged with the mandate of fiscal management of these agencies, we have not begun to look at what the changeovers would mean. But as a concerned taxpaying citizen, yes, it's a big question and it is a genuine concern of our board, causing us to meet in the summer prior to our first meeting in the fall.
Mr Tilson: I would think that members of the committee would be interested, Ms Wolfe, in this, once you have come to some conclusions as to what it's going to mean to your operation. I suspect you're going to have to get a bigger computer just to match all the bureaucracy that it's going to mean. But I certainly and members of my party would be interested in what it's going to mean to you financially to continue operation, if anything.
Ms Wolfe: Okay.
Mr Tilson: I have one further question, and I don't know whom to direct that to. The question has to do with a topic that was raised on page 4. That was a suggestion that there would be conflicts with other pieces of legislation, and you've listed, in the second paragraph: "Staff in our agencies whose responsibility it is to care for these children are rendered impotent. For example, children who come into care are obliged to have medical and dental examinations. This is the current law under the Child and Family Services Act." And then you, of course, say that the child will now be in a position to refuse this. I wonder if you could elaborate on that, referring specifically to the legal conflicts that perhaps your staff will be put into, if any; or have you looked at that?
Ms Schwartz: There's no question that there is a conflict, because one of the things we absolutely have to do is maintain our records, which are checked on a regular basis, with internal audits and also outside audits. Licences are reviewed on an annual basis, and people will look at the children's files to make sure that the dental forms are filled out and the medical forms are filled out and the immunizations are up to date.
So I'm not sure how to answer exactly, except it puts us in a dilemma. We're not sure what it is we're supposed to do then, when one piece tells us this and another piece gives another option. So it has to be addressed. I guess that's the way to say it.
Right now it leaves us in this vacuum in between, where we're the ones who will get into trouble one way or the other. We can't say "You have to do this" and we also can't provide for the records that must be done.
Mr White: I'd first like to convey my congratulations on your presentation and upon the work that your association has done in the last number of years. I'm a professional social worker myself and I've worked with children's mental health centres, both as a child care worker and then later as a family therapist social worker. Many people I know in those facilities think very highly of your work; and I know, from my last 10 or 12 years, of the kinds of crises that families are into at the point where children are referred to group homes, to institutions such as you're representing. They are not easy points in those families' lives, and frequently, I think probably a third of the time, maybe a quarter, maybe a little bit less, those kids are really problematic -- not all.
You point out in your brief that you like to involve the children in the treatment plan as much as possible. Sometimes it's sort of passive involvement: "This is what the treatment plan is. Do you hear me?" But it's involvement on an ongoing basis. You were funded under the CFSA. You wouldn't have many of your facilities funded under other ministries?
Ms Schwartz: No, not those we represent.
Mr White: Okay. The CFSA is still a fairly recent piece of legislation. I know from my own practice that it very much freed up that practice and allowed me to work with people who are 12 or 13 who come in on their own. They didn't have to have their parents' permission or a written form, or whatever, as they earlier did. But you would essentially not have to be concerned about Bill 109, except, as you're saying, in regard to treatment with doctors -- infections, tooth decay, psychiatric treatment. What do you think causes the concerns you have, aside from those issues? I know there's a lot of concern with children's mental health centres about this provision, but it wouldn't directly impact upon your association. What do you think would cause it, for the most part?
Ms Schwartz: First of all, many of our agencies are also involved with treatment, so they will have consulting psychiatrists, for instance, or there will be an ongoing forum where a professional works with children. So we are involved in treatment. Often the day-to-day stuff is the most significant when a child is living in your home. But we're most concerned that when we bring in, for instance, a psychiatrist to work with our children, they could refuse that, and also refuse an ongoing medical thing that is necessary. I can't think of anything off the top of my head.
Mr White: It would affect ongoing treatment with a psychiatrist, but it wouldn't affect an assessment, because that kid isn't going to respond either way. At least my experience has been that the kid isn't willing to see the psychiatrist. So it affects ongoing treatment. Would your facilities be involved with ongoing treatment with psychiatrists?
Ms Schwartz: Definitely.
Mr White: In the facility?
Ms Schwartz: Both. Depends on the size.
Mr Wessenger: I just want clarification here. What you're saying is that no child under 16 has a right to make a decision with respect to a treatment, even if that child understands the information that is relevant to making the decision and has the ability to appreciate the consequences of a decision or lack of decision. You say that even in those circumstances a child would not have the right to make a decision. Is that what you're saying?
Ms Wolfe: The question, as Barbara Sullivan so succinctly put it, does become one of capability versus responsibility. For a lot of the children in our care it is a natural for them to say no, whether they're 16 or nine. Because of the multiple stressors in their individual case history, it becomes very difficult to define capability with the children in our care, and this is our worry.
Mr Wessenger: What I just stated was the common law test with respect to the question of capability: first, the ability to be able to understand the information and, second, the ability to understand the reasonable foreseeable consequences. When you look at the ability to appreciate, that may include emotional factors such as a severe trauma or, in the case of a young person, immaturity or particular background. So I suggest to you that the common law does cover the situation very well. What this legislation does is codify, in effect, the common law. We're not changing the common law. We're not putting any particular provision in it. We're putting no age in the legislation; there's no age in the legislation. We're just continuing on the common law.
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If you have concerns, perhaps where they should be addressed is in ensuring that the definition of "capability" and that aspect is dealt with in a proper way. The clear intention is if a person is not able to understand or appreciate the consequences because of his trauma, then obviously he's not capable.
Ms Akande: Thank you very much for this presentation. Having come out of the work I was in previously, I'm somewhat familiar with children who have many of these difficulties. You put it so well when you said these children so often say no when they are addressed with anything new that comes under the general heading of treatment. Given that situation, what do you currently do?
Ms Rifkin: I'll speak to that with regard to the population of children that I'm associated with where they often say no and they often fight you every step of the way. The best we can do is communicate to them why it is we are going to impose the treatment and carry on and support them throughout. That's all we can do.
Ms Akande: Given that process you go through, do they usually acquiesce and agree to the treatment? Are there any whom you have to tie down?
Ms Rifkin: Yes.
Ms Akande: Are there many?
Ms Rifkin: Many. It's unfortunate. It's sometimes a function of their disorder. Sometimes the sound of fluids rushing through them, like a needle going into their arm, is too much for them to cope with. It's something that's very difficult for a care giver to understand. But if a child does have trust in the relationship, sometimes he does acquiesce and you can support him through that process.
Ms Akande: Given the information just read to you by my colleague about that situation actually being covered, and in view of what you've said, would you have to refer to that frequently? Would you have to rely upon that evaluation of not being able or capable?
Ms Rifkin: I listened to that and I don't know I agree that they're not capable, but I think the word I heard was "appreciate," because of the trauma.
Mrs Sullivan: Mr Chair, I wonder if we could have a clarification because of some of the words that are used. There are different interpretations of how agencies that are represented here, and children's aid societies, by example, do what they do with children. We have heard in some of the testimony before us words like "impose treatment" and so on. In fact, what is occurring is that under legal mechanisms under the Child and Family Services Act, these agencies are providing consent to treatment on behalf of those children. So while the word "impose" comes before us, and I notice that some of the government members smile when that word is used, in fact there is a legal obligation and a right and responsibility provided under the CFSA to provide consent to treatment. It's important to get that on the record.
The Chair: Ms Braseliten, Ms Wolfe, Ms Schwartz and Ms Rifkin, on behalf of this committee I'd like to thank you for coming here and giving us your presentation today.
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
The Chair: I'd like to call forward our next presenters, from the Ontario Association for Community Living. I'll remind you that you'll be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your comments to about 15 minutes to allow questions and comments from each of the caucuses. As soon as you're comfortable, would you please identify yourselves for the record and then proceed.
Mrs Judith Sandys: Judith Sandys.
Mrs Audrey Cole: Audrey Cole, chair of the OACL committee on advocacy and guardianship.
Mr Rod Walsh: My name is Rod Walsh, legal counsel to OACL.
Ms Cheryl Easton: I'm Cheryl Easton and I'm president of the Ontario Association for Community Living. We appreciate this opportunity to present our concerns, which unfortunately have not been alleviated by the recent amendments. The design of Bill 108 and the discriminatory and far-reaching effects it will have on people with severe disabilities leave us no alternative but to make every possible effort to stop it from passing into law in its present form. Audrey Cole, the chair of the OACL task force, will present OACL's concerns.
Mrs Cole: Although some of OACL's concerns about the Advocacy Act were alleviated by recent amendments, the principal one, that of the act's failure to provide appropriately for the needs of some of most vulnerable people in the province, remains unamended at this time. It's a glaring example of a legislated inequality based purely and simply on the severity of a disability. The Ontario Advocacy Coalition has already spoken for OACL on the need for further amendments. Other than those amendments that are required, OACL fully supports the development of an advocacy system in Ontario.
On matters relating to the Substitute Decisions Act, OACL shares with People First of Ontario and with the Canadian Coalition for Community Living, our national body, a commitment to do whatever has to be done to prevent further injustice to people with severe intellectual disabilities. OACL and People First do not have the support of the advocacy coalition in this effort to convince members of the Legislature not to allow the inherent discrimination of the traditional guardianship model in Bill 108 to be legally sanctioned. Please remember that what many people see as a last resort will be the first resort for the people about whom we are concerned, simply because of the extent of their disabilities.
In speaking to the justice committee earlier this year, OACL noted that the state has a duty to make the necessary legislative accommodation to the handicapping effects of disability: The spirit of the law must be to lessen disadvantage. Although society is gradually recognizing and accepting this responsibility in relation to people with physical disabilities, ramps being only one of the many obvious examples, there is an apparent reluctance to recognize the social and legal barriers to equality faced by people with intellectual disabilities.
The handicapping effects of the traditional legal guardianship paradigm are particularly damaging to people with intellectual disabilities, a point that's already been made to the committee. Guardianship's discriminatory and unjust because it removes the fundamental right to self-determination, classifies and stigmatizes the person on the basis of disability, reduces his or her status to that of a legal non-person for all official purposes and offers no commensurate benefit in return. In fact, guardianship increases rather than reduces the person's vulnerability.
The Attorney General has told us that OACL helped his ministry to better understand the limitations and negative aspects of guardianship, but as many other organizations and individuals believed that guardianship was necessary, he said it would not be eliminated. Are those other organizations and individuals whose advice the government has apparently taken saying that it doesn't really matter that guardianship discriminates against people with severe intellectual disabilities or are they saying that they don't believe it? OACL and People First, whose members between them personally know more people with intellectual disabilities than any other organization in this province, believe it. It's a matter of fact and it's a matter of record.
The minister said he was looking for ways to "extend supportive, consensual decision-making" to respond to our concerns. OACL has been given to understand that the amendments related to powers of attorney for personal care represent the Attorney General's solution. With all due respect, OACL submits that the amendments do not remove the discriminatory and unjust effects of the proposed legislation.
The fundamental purpose is still substitute decision-making. In that model, a competent or capable decision-maker makes decisions for the person presumed to be determined to be incompetent or incapable. A process designed to legally replace a person in this way inherently jeopardizes people with severe intellectual disabilities. Replacement is not an equitable substitute for empowerment.
Third-party interests are legitimate and real. It's both unnecessary and morally repugnant to provide this security for professionals and other non-disabled persons at the expense of declaring people to be mentally incapable and assigning their decision-making rights to other persons. The same protection can be built into the consensual or supported decision-making model as it's presently built into the substitute decision-making model.
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OACL's concerns can't be addressed by loosening some of the rules in the traditional legal paradigm of guardianship, as these amendments do with respect to granting powers of attorney. Powers of attorney increase the empowerment only if people already exert control over their own lives. Powers of attorney, validated or unvalidated, are in effect guardianship. They should be an option only for people who fully understand their implications.
The notion that powers of attorney don't have to be validated to be used for consent purposes, as the amendments imply, would be more convincing were the extensive provisions for validation to be removed from the act. The fact that there is a detailed validation process which includes assessment and declarations of incapacity will inevitably lead to the demand for validation by third parties to ensure the utmost protection the law can provide.
Although people wouldn't have to be further labelled by a finding of capacity, there is virtually no accountability in an unvalidated power. It would amount to unlicensed guardianship over the person.
When OACL suggested looking to powers of attorney as an avenue for change, it saw them as a way of stepping into a new and different paradigm. It saw some form of power of attorney as a potential vehicle for sanctioning partnerships in supportive decision-making. In this different way of thinking, there is no such legal fiction as incapacity or incompetency, since the necessary support is provided to enable people with intellectual disabilities, and others, to be regarded as capable of self-determination. That's the way it typically is for most of us. We're all free to accept support in our decision-making. We do so. We're never called upon to declare the extent of that support. That principle of presumption of capacity must be maintained for all people.
In its recommendation last February, the OACL outlined a broad framework for change in legislation related to decision-making and identified certain principles on which new legislation must be built if it's to be just and non-discriminatory. Rather than further disabling people whose decision-making capacity is already doubted on the basis of disability, the law must enable and empower them and protect their fundamental right to self-determination irrespective of the amount of support they require to exercise it. It's difficult to see how the provisions in sections 47 to 51 could accommodate a consensual or supportive decision-making model.
In part 1 of our brief, which I believe you all have, OACL explains again the implications of Bill 108 for people with severe intellectual disabilities and offers some suggestions for change. In part 2 we address the specific clauses that still cause concern and in part 3, at the invitation of senior officials of the government, OACL, with some assistance from its colleagues at the Canadian association, has tried to suggest some alternatives to powers of attorney. We believe these will be helpful not only to people who always need support in making decisions, but also to those of us who would really like to retain our natural status as presumed decision-makers in our own right, rather than eventually being replaced in the decision-making process at the very time we need the most support.
Rather than assessments of capacity, people must be enabled to identify the supportive decision-makers by whatever means they choose; by identifying them actually in writing, if that's possible, by indicating choice by any other means, or by demonstrating even the existence of a trusting relationship with certain other people in which choices and wishes can be determined and interpreted.
Supportive decision-makers must be accountable. They must agree to act with utmost loyalty to the person in a manner that upholds that trust always. In documenting the acceptance of such responsibility, lawyers or other authorized persons must satisfy themselves of the legitimacy of the relationship and the absence of conflict.
Supportive decision-makers must adhere to strict standards of conduct in interpreting and communicating a person's wishes.
Consent for medical purposes must be deemed valid if either the person receiving the decision-making support or the person providing the decision-making support understands the nature of the process and the risks and benefits involved. The practitioner must take reasonable measures to confirm that the will of the person is being respected.
These alternatives are dignified, practical and possible. It's unacceptable in this day and age that new legislation would fail to address the critical issue of accommodation to the social and legal disadvantages of citizens with severe intellectual disabilities.
Not only the government of Ontario but all citizens of this province have an obligation to build the kinds of ramps that such people need. The Ontario Association for Community Living will do everything in its power to ensure that people with severe intellectual disabilities are not further disabled by legislation designed primarily to protect others. This is one of the most critical issues in which this association has ever been involved.
OACL and People First of Ontario are all willing to work with the government in developing just alternatives.
The Vice-Chair (Mr Mark Morrow): Any comments or questions?
Mr Jim Wilson: Thank you very much for your brief. I understand the points contained therein, but going back to a group we had earlier today, the Friends of Schizophrenics, in terms of guardianship, from my bantering back and forth with the parliamentary assistant to the Minister of Health, we're left in that situation where family members may feel it best, when their son or daughter is in a manic state, for example, to use guardianship and a provision that would be obtained through the courts to hospitalize a schizophrenic person in emergency situations. Do you have any comments on that? Under this model, as you correctly point out, this is another example where the only way, really, is to obtain a guardianship ahead of time.
Mrs Cole: Certainly I can't speak for parents of people with schizophrenia. I have no personal experience of that. I can say, as a parent of a person with a severe disability who has what we would officially call very limited typical means of making his wishes known but who can nevertheless make his wishes and choices known to people who know him very well -- as a parent of a person with a disability, what I can say is that no matter what the particular concerns are of any one group, they should never be allowed to shape legislation that in the same process is going to deny the rights of a lot of other people who don't have the same opportunity to speak and shape their own pieces of legislation. That's all I can say about that particular issue.
Mr Tilson: I have a question for Mr Walsh. It has to do with the powers of attorney legislation, Bill 108, and specifically section 13, which appears to deal with existing powers of attorney. One looks at all the powers of attorney that are now in existence, many of which do not have any witness. Some have one and don't have two, which is what this legislation requires. None of them that I can recall will have any specific statement that the witness is confirming the capacity of the person who's signing it.
Do you have any concern about whether section 13 or any of the other sections that perhaps I haven't noticed validate the thousands and thousands and thousands of existing powers of attorney that, in my view, may become invalid as a result of this bill? Do you have any concern on that subject?
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Mr Walsh: I'm not quite sure I understand your question, Mr Tilson. Is the concern that what we propose might have?
Mr Tilson: No. I guess I'm looking at you because you've indicated that you're a legal adviser. My concern is whether you have any concern on the validity of existing powers of attorney.
Mr Walsh: We really haven't a concern about that aspect of the legislation. We would have thought there would be some form of succession that would validate them.
Mr Fram: I'd like to take an opportunity to answer the question. Section 13 is a preservative section. It preserves all those powers of attorney that have been created since we amended the act in 1979 to bring in the Powers of Attorney Act. The Powers of Attorney Act provides for enduring powers of attorney.
What this does is to say that if you did a power of attorney that in effect was witnessed in accordance with the act, as it now is and has been, if it contains a provision that it will continue when the grantor becomes incapable, then it will be considered, despite the fact that it doesn't meet the formal requirements of this act, to be a power of attorney under this act.
Ms Akande: I'm interested in supported or supportive decision-makers. I see them as not necessarily being advocates as much as being support, but it can be a euphemism in many respects, can it not? If you look at the most dependent, those people who are most dependent in terms of their abilities, would not the support in fact be actually making the decision?
Mrs Cole: We've only looked at the people you described. We have never in any of our presentations raised any issues that affect people who can make their own wishes clearly known. Our sole effort in this respect has been to preserve the rights of the very people you have just described.
The issue is that because we don't know people with profound disabilities, we make assumptions about what they understand and how they make choices known. We make an incredible number of assumptions about that. I can tell you as a fact, knowing a number of people with profound disabilities whom many people would just look at and assume that they would have no means of even having opinions or choices, that it's not a fact, that if we take enough care in getting to know people, to share their lives with them, rather than provide care for them, then we do begin to understand what they understand, how they communicate it, and we do learn to interpret that. That's what this is all about.
I think the Canadian association, which will appear before you on Thursday, will have much more detail on that, because it has an alternatives to guardianship task force that's had the opportunity of looking only at alternatives. They haven't been weighed down by the need to respond to legislation.
In the model of supported decision-making that is developing and is going to be ultimately accepted, I believe, by everybody, not just with respect to people with disabilities, all those guarantees of controlling or manipulating which you seem to be implying are going to be in -- the idea is built on a trusting relationship that's got criteria which make it so that people will be held accountable if there's that kind of control or manipulation.
It's a question of building the legislation to do what we believe it ought to do rather than just doing what it's always done in the past. I don't have the kind of fears that I sense you're expressing, because I think legislation can be built to make those fears not fears at all. There just wouldn't be room for them. I really believe that.
Mrs Sandys: In our view, we would suggest that perhaps the term "guardian" is a bit of a euphemism, implying that it will protect the interests and wellbeing of people when in fact it will make them even more vulnerable than they currently are.
Ms Akande: My one concern, if I may extend this a moment longer, is that in fact there is a great deal of interpretation that is required by that person or persons who are giving support. Even with the very best intentions and respect for the individual's wishes, that interpretation would be necessary and would in fact allow one to make a decision which may rely more accurately on what they have inferred rather than what the actual person has implied.
Mrs Sandys: I think a supportive decision-making model challenges us to make decisions that are valid from the perspective of the person with the disability. If we don't challenge ourselves to do that and we rely on a substitute decision-making model, which is guardianship, then we're that much further behind. We haven't even challenged ourselves to do that.
The Vice-Chair: I want to thank you very much for that fine presentation.
ALLIANCE FOR LIFE
The Vice-Chair: Next we have Alliance for Life. Good afternoon. Just a reminder that you'll be allowed up to a half-hour for your presentation. We 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 yourselves for the record and then proceed.
Mrs Jakki Jeffs: Good afternoon. My name is Jakki Jeffs. I'm executive director for Alliance for Life -- Ontario.
Mrs Regina Weidinger: I'm Regina Weidinger and I'm the executive board member for Alliance for Life across Canada, for the national office.
Mrs Jeffs: We're here today representing 80 educational pro-life groups and approximately 70,000 members in Ontario. Our concerns are in just two areas this afternoon and represent very much, I think, concerns of the ordinary folks. We can't profess to be professional doctors, lawyers or anything else, but these are some of the concerns we have which we would like this committee to address.
Subsections 10(2) and (4) of Bill 109: We're extremely concerned at the inference of these subsections. We understand that the presumption of these subsections is that a minor child from age 12 is capable under this act to consent to treatment without parental guidance, notification, input or consent. However, should the health practitioner find that a child of 12 or more is incapable with respect to the treatment, what is the procedure?: To notify a rights adviser. What about the parents of the child and their right to be involved in the medical treatment decisions for their children?
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Section 13: This section notes the right of a person of any age to apply to the board under section 26 to contest the finding of incapability or to refuse or give consent if the person is capable with respect to the treatment.
We would like to know if this section applies to children under the age of 12 and, if so, where are the rights of the parents to be part of this decision-making process? Will parents be forced to apply to be guardians of the person of their minor children under the Substitute Decisions Act, 1992, in order to protect their rights as parents concerning medical treatment for their children?
After our last presentation in March, a directive came into my possession. It was circulated by the Ontario Association of Sexual Health Professionals across this province. It noted Bill 109 especially, and subsections 8(1) and 8(2), and the fact that the bill included a section that has serious implications for health care services currently available to adolescents under the age of 16.
I quote in part subsection 8(2): "would effectively mean that physicians will refuse confidential treatment to those teens under 16 and thus deny those teens an aspect of care: confidentiality." Subsection 8(2) of the original proposed legislation stated: "A person who is less than 16 years of age is presumed to be incapable with respect to the treatment, but the presumption may be rebutted."
We note with regret that this section is not now a part of the amended proposed legislation.
In preparing for this afternoon, I have spoken with many of my friends and colleagues about the presumption of capability, which Bill 109 confers upon our minor children from age 12, should this legislation become law. Their reactions range from incredulity to anger at the audacity of legislators to take away their rights and duty as parents to protect their children from making decisions which they are not capable of making.
In a report issued recently on Canadian families by Statistics Canada, it was noted that stable, husband-and-wife families made up a full 87% of Canada's 7,356,170 families in 1991. "The family is alive and well with 86% of Canadian children under 15 living in two-parent families," reports Gordon Priest, Statistics Canada's social data expert.
With statistics such as these which show that 86% of Canadian children 15 and under live with and are cared for by their parents, how dare legislators have the audacity to undermine the rights of Ontario parents to speak for their minor children in health matters?
The key word, it would seem, in all this was mentioned in the Ontario Association of Sexual Health Professionals' comments: confidentiality. Under the original proposed legislation, it would no longer have been possible to refer minors for abortion through school-based teen health clinics or to prescribe oral contraceptives to minors or conduct internal examinations of minor children without consulting, informing or receiving the parents' consent.
Under the current proposal, this practice, it appears, will be allowed to continue sanctioned by law, with the addition that minors can be admitted to hospital for their abortion or other treatments. In the past, the minors have been sent to abortion facilities because they did not require parental consent, which the hospitals did require.
I have spoken to doctors in my local area and one of their concerns has been the fact that these so-called "teen clinics" have not been requested to inform either the parents or the family physician that the minor child has had an abortion or is now using oral contraceptives. As any physician understands, it's extremely important to know the medical history when dealing with patients.
We remain utterly opposed to these sections which appear to exclude parents from medical treatment decisions for their minor children to which, as parents, they have every right to consent.
We respectfully request that this committee uphold the rights of Ontario parents to give consent to medical procedures for their minor children. At the least, parents should be notified when their children are considering medical treatment, whether it be prescribed in a hospital teen health clinic or a doctor's office.
Our comments to Bill 109 and Bill 108 are focused in the background information of the Substitute Decisions Act. Section 9, entitled "What are the Key Features of the Substitute Decisions Act," reads: "The right to instruct a designate with respect to future treatment and care, and the right to have those wishes respected under the power of attorney. The Substitute Decisions Act, together with the Consent to Treatment Act, ensure that a person's 'living will' is respected."
We understand that nowadays people are concerned that their last days will be fraught with pain and suffering and spent hooked up to modern technology. We realize that this legislation seeks to achieve the self-determination of the patient over his or her own fate in the face of a potentially abusive use of technology. However, this legislation will be the first legal recognition in Ontario of a document called the living will.
Our concern with the concept of legalizing living wills stems from the knowledge that at present, patients, family and physicians are free to exercise their choices and responsibilities without legislation, and the possibility of legal action in these areas is more imagined than real. Legislation cannot resolve conflicts arising from questions regarding medical competence or the accuracy of a prognosis any more than it can guarantee that the patient's wishes will be accurately interpreted. The doctor is the servant of the patient, and we are concerned that this legislation will make the doctor a servant of the legislation and undermine his ability to be an advocate for his patient.
Consider the patient who has no living will. If the doctor is forced to serve the statute, he or she may refuse to withhold or withdraw artificial life-sustainers from dying patients. Most important, how is it possible for a person to make intelligent, informed decisions regarding specific and appropriate responses to unknown events and detailed circumstances?
We understand and applaud the intentions of these bills to protect patients' rights, but our opposition to them stems from that very same need to protect patient rights. Without the complication of law, the patient already has the right to refuse, either through family or legal guardian, the use of extraordinary life-sustaining procedures. An immediate conclusion that one may make from this legislation is that the only way in which a person's inherent right may be exercised is through a living will, and this just is not so.
We are concerned that it is deemed necessary to enact laws to ensure patient rights, since this, once again, would appear to infer that without this legislation we are at the mercy of our doctors. We object vehemently to the inference in this legislation that doctors are masters of their patients, not servants. We believe that any legislation that appears to make it necessary to write a living will in order to avoid unreasonable treatment during the dying process is undercutting patients' rights.
We see as a consequence of this legislation the abandonment of the right which we all have to refuse to be treated by any or all physicians. In the United States, where the concept of the living will is enshrined in law, there is a growing belief that the only way to avoid overtreatment is to have a living will and that this legislation enshrines your right, not recognizes it as inherent.
It is our belief that living wills tend to exclude family from decisions and responsibility. This is a negative factor since only the family would have had the opportunity or the love to take the time to talk with the person and determine how they feel about certain courses of action in given circumstances.
In this, as in most other living will legislation, there is no penalty attached for violation. To underresuscitate a patient with a living will may lead to his death, but there is no avenue for action since the living will is directed to overtreatment.
This legislation purports to protect doctors, yet doctors have always had the right to withdraw from a case if they are asked to perform acts that are incompatible with their conscience as physicians or individuals.
We suggest that if it were really the case that patients are unable to extract themselves from doctors who would overtreat them, if it were really the case that doctors are not free to withhold or withdraw certain procedures which they deem useless to the patient for fear of criminal prosecution, then legislation could be written that simply states that when a patient suffers from a fatal disease, a physician can register the fact with an appropriate hospital body that would have the right but not the duty to verify the fact. A mentally competent patient could then request in writing that no extraordinary treatment be applied to him or her. Where a patient was incompetent to act, by age or condition, the family could make a similar request.
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Once the written request had been made, the legislation could stipulate that the treating physician was not subject to civil or criminal prosecution for omitting or ceasing treatment. In those cases where a physician is concerned that the family is not making decisions based on the best interests of the patient, he could have recourse to the courts to place the patient under guardianship.
In summary, our opposition to legislation which will legalize living wills is based, in our belief, that it undermines the rights already inherent to each person. In the United States there have been several initiatives which have endeavoured to expand living will legislation to "aid in dying," a euphemistic term for a lethal injection.
In 1989 in a model aid-to-dying act, which was drafted by the University of Iowa college of law, the commentary to the model law explains, "Minors have the right to request aid in dying whether or not their parents agree." In the model law, aid in dying was defined to include "the administration of a qualified drug for the purpose of inducing death." The model law also recognizes the need to provide euthanasia to those unable to request it and goes as far as to state that, "It is not improper for a governmental agency or health care provider to suggest to a patient's family that they request aid in dying." Cost containment also plays a vital role in this proposal. A preamble to an earlier draft of the act stated, "Effectively, this act provides for quality control in the termination of life," and it "provides a principled means of managing our health care resources."
Those who support euthanasia consider legislation which gives force of law to living wills as the first step to decriminalizing euthanasia and assisted suicide. We vehemently oppose this legislation on the basis that it provides that first step and agree with Harry van Bommel's own conclusion which he states in a book entitled Dying for Care -- Hospice Care or Euthanasia: "The key, however, remains the desperate needs of people who have terminal or life-threatening illness. If we are not willing, personally, to provide the loving support of hospice care to people who are dying, then we cannot delegate our human responsibility to these people with a euthanasia law that will allow others to kill them."
This brief is respectfully submitted. Thank you.
The Chair: Thank you. Questions and comments.
Mr Owens: I guess, to put it diplomatically, I'm at variance with some of the comments you've made in your brief. In terms of the issue with respect to living wills, a person's death is a very individual experience and it's my view that he or she should be the person dictating the events and perhaps the time at which death takes place.
It's my experience through volunteer work with terminally ill patients that this is an event that often requires some careful planning, some careful thought, and I think your comments that simply legalizing a process where a person can plan through a living will the treatment process is an opening for euthanasia -- I have to disagree with you strongly on that. I think the reasons people wouldn't want to draw up living wills is to give comfort to those who care for them.
It's been my experience with the group I was dealing with, that in fact you reflect that people who love them should have an opportunity to participate in this decision. It's been my experience at that point that those people who "love them" have been nowhere to be found, that as the patient drew near to death, the individuals who were supposed to be closest to them at that point were not there.
Again, it's my view that death with dignity through the process of the living will, through the conscious desire of a patient to choose the types and the level of treatment that he or she receives is his or her right. It clearly does not open the door to euthanasia, as you've described.
I think the draft piece of legislation coming out of Iowa -- we clearly have two different medical systems between Canada and the United States and it's our view that we have a system that endeavours to preserve dignity and it's not a system that looks at living wills or death with dignity as a means to rationalize health care or to put some kind of economic order into the process.
It has been suggested by some groups that you go out and you talk to patients who are dying, talk to them about their experiences, talk to the families, talk to the physicians who are involved in palliative care situations. I think that your views would hopefully be swayed by the human experience rather than perhaps an intellectual decision that you've made.
The Chair: Any response?
Mrs Jeffs: Yes, I'd like to. You're assuming, then, I have no human experience at all of it. We come from families, just as you do. Our reports on the fact that living will legislation has indeed been seen by those who propose and agree with euthanasia as the first step is not something that we have just picked out of an intellectual hat, and that brief was put together from a human area because I don't have medical or legal expertise; it's looking at it.
I sat with my father while he died. I know the last stages of death. The people whom we represent have had disabled family members die, have had horrible situations in death. What I'm saying and what we are saying is that we cannot for sure stipulate the minute-by-minute, blow-by-blow decision of our death experience because we don't know it. There is no problem if people feel comfortable writing a living will, fine; but we do not need to give that living will force of law. We do not need to legalize it or we may find our doctors unable to help in situations 10 years down the road, when the care that was foreseen when the living will was written was maybe extraordinary, but 10 years down the road it wasn't. Yes, I believe you're absolutely right that we should be able to determine what we want and what we don't in those procedures, but not under the auspices of a living will.
Mr Owens: I think, though, that in terms of reviewing living wills, perhaps, whether it's through a regulatory process or through discussion, there needs to be some level of re-evaluation of a patient's wishes. But, again, it's been my experience, through personal family experience, through the volunteer work that I have engaged in, that it's very difficult. While the do-not-resuscitate order has been in place for not a great deal of time, it's been around. Whether people choose to admit that it's there or not, it's there. In order to ensure that the patient's wishes are clearly understood and reflected in the treatment, I think that this issue clearly needs to be codified. I think, for reasons, perhaps, that you've stated, that the physician will know where he or she stands with respect to the wishes of the patient. If you want to look at it from that perspective, perhaps that would give you comfort.
Mrs Jeffs: It doesn't.
The Chair: Further questions or comments? Seeing none, Mrs Jeffs and Mrs Weidinger, on behalf of this committee I'd like to thank you for taking the time out this afternoon to give us your presentation.
This committee now stands adjourned until 9:30 tomorrow morning.
The committee adjourned at 1611.