BRANTFORD AND DISTRICT ASSOCIATION FOR COMMUNITY LIVING
LONDON BATTERED WOMEN'S ADVOCACY CENTRE
ACTION LEAGUE OF PHYSICALLY HANDICAPPED ADULTS
PERSONS UNITED FOR SELF-HELP LONDON
CANADIAN MENTAL HEALTH ASSOCIATION
INDEPENDENT LIVING CENTRE, LONDON AND AREA
NEIGHBOURHOOD LEGAL SERVICES LONDON
ADULT PROTECTIVE SERVICE ASSOCIATION OF ONTARIO
PSYCHOGERIATRIC COMMUNITY CLINIC
LONDON AND DISTRICT ACADEMY OF MEDICINE
CHILDREN'S HOSPITAL OF WESTERN ONTARIO
CONTENTS
Wednesday 14 February 1996
Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /
Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement
et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick
David Winninger
Brantford and District Association for Community Living
Eleanor Moore, member
London Battered Women's Advocacy Centre
Cheryl Champagne, community advocate
Action League of Physically Handicapped Adults
Dr Shirley Van Hoof, treasurer
Patti Doolittle, chairperson
Persons United for Self-Help London
Bonnie Quesnel, president
Jennifer Wilcox
Canadian Mental Health Association
Judy-Marie Watson, community links coordinator, London-Middlesex branch
Alex Bezzina, director of community services, Waterloo regional branch
Huguette Ouellette-Tries
Independent Living Centre, London and Area
Steve Balcom, president
Neighbourhood Legal Services, London-Middlesex
Bruce Wright, staff lawyer
Adult Protective Service Association of Ontario
Daniel Casey, chair
Dr David Evans
Psychogeriatric Community Clinic
Dr David J. Harris, director
Patrick Fleming, clinical coordinator
London and District Academy of Medicine
Dr Raj Velamoor, director, emergency psychiatric services, Victoria Hospital
Joy Wendling, paralegal adviser, St Thomas Psychiatric Hospital
Children's Hospital of Western Ontario
Dr Sandra Fisman, director, division of child and adolescent psychiatry
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président: Martiniuk, Gerry (Cambridge PC)
Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)
*Boyd, Marion (London Centre / -Centre ND)
Chiarelli, Robert (Ottawa West / -Ouest L)
Conway, Sean G. (Renfrew North / -Nord L)
*Doyle, Ed (Wentworth East / -Est PC)
*Guzzo, Garry J. (Ottawa-Rideau PC)
Hampton, Howard (Rainy River ND)
Hudak, Tim (Niagara South / -Sud PC)
*Johnson, Ron (Brantford PC)
*Klees, Frank (York-Mackenzie PC)
*Leadston, Gary L. (Kitchener-Wilmot PC)
*Martiniuk, Gerry (Cambridge PC)
*Parker, John L. (York East / -Est PC)
*Ramsay, David (Timiskaming L)
Tilson, David (Dufferin-Peel PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Caplan, Elinor (Oriole L) for Mr Conway
Clement, Tony (Brampton South / -Sud PC) for Mr Tilson
Duncan, Dwight (Windsor-Walkerville L) for Mr Chiarelli
Johns, Helen (Huron PC) for Mr Hudak
Marchese, Rosario (Fort York ND) for Mr Hampton
Also taking part / Autres participants et participantes:
Wood, Bob (London South / -Sud PC)
Ministry of the Attorney General
Spinks, Trudy, manager, implementation support and counsel, implementation support unit
Ministry of Health
Auksi, Juta, senior consultant, legislation policy unit
Clerk / Greffière: Bryce, Donna
Staff / Personnel: McNaught, Andrew, research officer, Legislative Research Service
The committee met at 0900 in the Radisson Hotel, London.
ADVOCACY, CONSENT AND SUBSTITUTE DECISIONS STATUTE LAW AMENDMENT ACT, 1995 / LOI DE 1995 MODIFIANT DES LOIS EN CE QUI CONCERNE L'INTERVENTION, LE CONSENTEMENT ET LA PRISE DE DÉCISIONS AU NOM D'AUTRUI
Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
The Chair (Mr Gerry Martiniuk): Good morning, ladies and gentlemen. This is the second week of hearings of the standing committee on administration of justice, consideration of Bill 19, Advocacy, Consent and Substitute Decisions Statute Law Amendment Act.
Mr David Ramsay (Timiskaming): Where are we this morning?
The Chair: We're in London, Ontario, my alma mater. There are some changes I'll give you. They'll come up during the morning, but at 10:20 we have the Action League of Physically Handicapped Adults instead of Bill McCormick; at 10:40, Jennifer Wilcox instead of the named organization; at 11, the Canadian Mental Health Association of London-Middlesex and Waterloo region. That's about it.
We first have Mr Winninger, who is a solicitor and, I understand, a former MPP for this area. Welcome, Mr Winninger.
DAVID WINNINGER
Mr David Winninger: Thank you to the committee for accommodating me here today. I have left a copy of my paper with the clerk and I understand she'll copy it when she gets back to Toronto.
The Chair: Fine. You have 20 minutes, including questions. You may proceed.
Mr Winninger: As a lawyer presently who frequently is called upon to draft powers of attorney for property and personal care, and as one who appears regularly before the Consent and Capacity Review Board, soon to become the Consent and Capacity Board, I continue to have an interest in this legislation.
In my former position as parliamentary assistant to the Attorney General, I was responsible for steering Bill 108, the Substitute Decisions Act, through the justice committee in 1992. Bill 108 and its companion legislation, Bill 74, Bill 109 and Bill 10, as you know, were finally proclaimed in the spring of 1995. I've published an article on the legislation in the Canadian Journal of Health Law and Policy entitled "Incapacity and Autonomy: Striking a Balance," as well as Lawyers' Weekly and other publications. I've also been asked to speak on the subject to the Canadian Institute of Law and Medicine and at other educational meetings.
In my opinion, Bill 19, introduced by the current government, combines some prudent changes to the Consent to Treatment Act and Substitute Decisions Act, with some less than prudent changes. The repeal of the Advocacy Act, however, constitutes my greatest disappointment, as you can well imagine, and I propose to deal with the repeal of the Advocacy Act first.
The health and activity limitation survey conducted in conjunction with the 1986 census revealed that over one million adults in Ontario at that time, or 16% of the population, had some type of physical or mental disability. Many of these people may be characterized as vulnerable.
In 1984, the late Father Sean O'Sullivan was asked by the Conservative government of the day to review the situation of vulnerable people and determine what protections could be put in place for them, including the physically disabled, the developmentally challenged, frail seniors and psychiatric consumer-survivors.
Father O'Sullivan, after consulting widely with lawyers, physicians, psychologists, other health care providers, consumers and a wide variety of stakeholders, published his report entitled You've Got a Friend. This report recommended the establishment of a province-wide system of paid, professional advocates.
Father O'Sullivan's report collected dust for a number of years under the Liberal government. Meanwhile, the tragic death occurred of Joseph Kendall, a resident of Cedar Glen, an unregulated boarding home near Orillia, due to abuse and neglect. The Ernie Lightman commission was appointed to inquire into unregulated residential accommodation in which adults vulnerable adults reside. Finally, in 1992 the NDP government passed the Advocacy Act which this government is now, with the stroke of a pen, rescinding.
The Advocacy Act was designed to assist elderly and disabled people who cannot speak on their own behalf to have a voice. Who will now safeguard the vulnerable from neglect, exploitation and abuse? Advocates provide the tools and information necessary to allow these people to make their own informed decisions regarding medical care, personal care and financial decisions and to have those decisions respected. These necessary protections are withdrawn under Bill 19.
The Consent to Treatment Act ensures that a patient receives information about treatment, alternatives, risks, side effects and consequences of refusal of treatment through the intervention of rights advisers. Who will now explain the effects of a finding of incapacity and the right to have a finding reviewed by the Consent and Capacity Board or the courts without rights advisers and advocates? Furthermore, who will now provide the kind of systemic advocacy required to break down barriers to fair and equitable treatment and prevent serious harm to the health and safety of vulnerable adults?
I strongly urge the committee to pass an amendment that would withdraw part I repealing the Advocacy Act.
Consent to Treatment: Subsection 2(1) of the Health Care Consent Act, 1995, updates the definition of "health care practitioner" to reflect the Regulated Health Professions Act. This is desirable. However, sections 2 and 7 of the act narrow the definition of "treatment" by excluding assessments of capacity, examinations of a person's condition and treatments which pose little harm to a person. I would question whether health care professionals can always know with certainty what treatments pose little risk of harm such that they may dispose with the consent of the person.
Section 3 of the act creates the presumption of capacity for all persons. This is commendable if there is recognition of the person's wishes and preferences in treatment situations. Without advocates or rights advisers, many presumed to have capacity to consent may have difficulty making their views and preferences known. Further, I have noted that when a mental patient, for example, consents to treatment, he or she is presumed to be competent to consent. When he or she refuses treatment, she or he is more likely to be found incompetent to consent to treatment.
Section 12 of the act provides that one health practitioner can propose a plan of treatment on behalf of others involved in a plan. A health practitioner can also presume the right to make adjustments or variations in treatment or to continue treatment in a different setting if the risks and benefits are not significantly different. This makes sense to me as well. However, the bill eliminates the requirement that rights advice or a notice respecting rights advice be provided when a plan of treatment is proposed to a person found by a health care practitioner to be incapable. Many health care practitioners anxious to treat patients do not always have the time or the inclination to ensure that the rights of such patients are adequately protected.
Section 16 removes the prohibition from administering treatment during the seven-day period for commencing an appeal from the board's decision to review a finding of incapacity or the appointment of a representative for an incapable person unless one of the parties indicates an intention to appeal. Without rights advisers and advocates, a vulnerable person may not be put in touch with a lawyer or gain advice regarding the merits of an appeal. Meanwhile, the treatment objected to will simply commence under this legislation.
Section 18 of the act no longer requires that a statement given by a person claiming to give or refuse consent on an incapable person's behalf identify his or her relationship to the incapable person, that the incapable person before becoming incapable would not have objected to him or her making a decision on that person's behalf to give or refuse consent, and that he or she believes that no person having a higher authority to consent is available, such as a guardian or attorney for personal care. Again, protections designed to ensure the authenticity of decisions made on behalf of incapable persons are being eroded.
The new act removes the prohibition on an attorney for personal care giving or refusing consent if the power of attorney was made after the health practitioner found the grantor to be incapable with respect to treatment. I am pleased that recognition is given to the fact that a person may be capable of giving a power of attorney for personal care to someone she or he knows and trusts, even if the donor of the power of attorney is incapable with respect to treatment. I think this was the case in the existing legislation, but it becomes a little more clear under Bill 19.
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I'm also pleased that section 18 of the act clarifies that a spouse with the right to consent or refuse treatment on behalf of an incapable person does not include spouses who are living separate and apart under the Divorce Act. I suspect that the last thing an estranged spouse would want is a partner with whom he or she is no longer living making a treatment decision on his or her behalf in what could be a potentially life-threatening situation.
Further, a person may consent or refuse treatment under the new act if he or she is not present when the treatment is proposed but contacted in some other way. This is useful and practical. However, where a person purports to consent to or refuse treatment, knowing that a person of higher or equal rank exists, there should be a safeguard, such as a written statement, that the person with higher authority would not object and not merely "belief." As the section is presently worded, pursuant to subsection 27(6), health practitioners are permitted to rely on assertions made voluntarily by anyone giving or refusing treatment on an incapable person's behalf.
Paragraph 19(2)(c)1 permits the substitute decision-maker, when considering the best interests of an incapable person, to consider not only whether the treatment will improve the incapable person's condition, but also whether it will prevent further deterioration or reduce the rate of deterioration. This may in fact conflict with what are called living will provisions expressed by the incapable person while previously capable. The person deciding the best interests of an incapable person should be obliged to disclose whether he or she knows of any oral or written wishes expressed with regard to the termination of treatment where a person cannot recover from physical or mental incapacity.
I am very concerned that a substitute decision-maker can once again consent to treatment involving electric shock under this legislation and aversive conditioning on behalf of an incapable person. I thought that was history now and I hope that the committee will consider amending that section.
Section 23 of the new legislation permits emergency treatment to be given without consent of an apparently capable person due to failure to communicate because of language barrier or disability, provided reasonable steps are taken to find a practical means of communication and there is no reason to believe the person did not want treatment. I can understand why we wouldn't want patients dying simply because English may not be their first language, and we don't want to put their lives in peril. On the other hand, it would be more reassuring if the section provided a mandatory responsibility for health practitioners to try to obtain an interpreter in these kinds of cases, both for the disabled and people who have language barriers.
I think it laudable that there will now be a scheme for obtaining consent on behalf of incapable persons for their admission to care facilities and for obtaining decisions concerning personal assistance services provided to them under personal assistance plans, but without the presence of rights advisers or advocates again, there is a danger inherent in this that the integrity of the incapable individual or even the vulnerable individual may not be fully respected.
I think it unwise, coming to the Consent and Capacity Board, that a member of the board may now sit alone -- they at present have to sit in groups of three or five -- and that no longer must a member of the panel dealing with an application involving capacity have expertise in evaluating capacity. This strikes me as a trifle bizarre, but that's what section 71 says. A member sitting alone on a panel is almost by definition prone to making idiosyncratic decisions, and without expertise in evaluating capacity, a great disservice may be done to the patient appearing before the board.
I also think it unfair that someone who treated or represented a patient can take part in a hearing, whether it's been over five years ago or not. The present act changes the requirement and says if you treated, or if you were a doctor, or if you were a lawyer who represented a patient over five years ago, it's okay to sit in judgement on that patient's capacity.
The hearing must be seen to be impartial. A retired psychiatrist, for example, who treated a patient more than five years ago, may have privileged information that may advertently or inadvertently affect the outcome of the hearing and, as you may know, it's retired psychiatrists who staff the current boards where a psychiatrist is required.
Finally, if the board will now only be required to furnish written reasons for its decision upon request of a patient, there should be a mandatory duty to advise patients that they may request written reasons, particularly those who may lack sufficient knowledge to request them by reason of incapacity or vulnerability.
Lastly, a word on the Substitute Decisions Act. Subsections 6(3) and 31(2) remove the responsibility of a person witnessing a power of attorney to have no reason to believe that the grantor was incapable. I believe this to be a serious flaw. It is quite possible that someone vulnerable by reason of age or infirmity could be coerced into signing such an instrument, and I quote as my authority none other than Stephen Fram, formerly of the Attorney General's office, who may be regarded as the architect of the Substitute Decisions Act. In the Fram report he says the following:
"As with property, an attorney for personal care's authority stems only from the mental capacity of the grantor. It is therefore imperative that the person creating the power of attorney understands the nature and consequences of the document being signed. This can be achieved by requiring the witnesses to certify, in writing, that in their opinion, the grantor was mentally capable of personal care at the time the document was signed. These witnessing requirements...would serve to impress upon the witnesses the gravity of the situation and hopefully dissuade those who might consider abusing the power. Although these safeguards will cause inconvenience to grantors, they should not prevent the power of attorney for personal care from being a practical tool for the making of `authentic' substitute decisions."
So removing that requirement runs directly contrary to the recommendations of the Fram report.
Hopefully, in the light of these comments and the comments of other presenters, the committee will seriously consider an amendment to reinstate the witness requirement and thereby uphold the integrity of the Substitute Decisions Act. Thank you.
The Chair: Thank you, Mr Winninger. We only have about 30 seconds per caucus,
Mr John L. Parker (York East): On the subject of a single assessor acting alone, the qualifications imposed in the statute for that assessor strike me as quite similar to the qualifications of your average judge. Judges lock people up in jail every day of the week and give them a criminal record and they do that acting alone. Why isn't it appropriate for an assessor who's similarly qualified to act alone?
Mr Winninger: Judges usually rely on expert evidence, and I'm not sure that the quality of expert evidence that is placed before a judge is always placed before the Consent and Capacity Board. Simply because these boards are convened on, I think it's a maximum of six days' notice or so, and it might be two days into that notice period before the patient is even able to make contact with a lawyer, and you can't always get adjournments -- for that reason I don't know that the comparison is entirely a valid one.
Mr Dwight Duncan (Windsor-Walkerville): You commented about the Lightman report and I believe there were 104 recommendations in that report. I just assume that you're implying that somehow the Advocacy Act addressed even a portion of those recommendations. My experience was that it wasn't the case and that the Advocacy Act didn't in fact respond even to 10% of those.
Mr Winninger: I didn't mean to suggest it was the Advocacy Act that responded to those recommendations. What Ernie Lightman did was highlight the plight of vulnerable people, while the Residential Rights Act --
Mr Duncan: Yes, but I guess the point I'm making is they really weren't responded to. None of the --
Mr Winninger: The Residential Rights Act passed by the NDP government, I think it was Bill 120, did respond to --
Mr Duncan: Not in its entirety.
Mr Winninger: Not in its entirety, but there's a lot in there and certainly this government should take a look at the report and --
Mr Duncan: In fact, they didn't respond to the vast majority of the recommendations and vulnerable people in those institutions are still very vulnerable because of the failure to act on that.
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The Chair: Thank you, Mr Duncan.
Mr Winninger: I agree with you.
Mrs Marion Boyd (London Centre): Thank you very much, David, for coming. On this issue that Mr Parker raised, the burden of proof in a court of law is much higher than it is in front of a review board. We're talking about beyond a reasonable doubt and we're talking about that beyond a reasonable doubt with what is presented before the court and no other evidence. Consistently, our colleagues keep talking about this as being a comparable situation. It certainly isn't, is it?
Mr Winninger: Certainly in a criminal case the test of proof is proof beyond a reasonable doubt and that may be the kind of case that the member for the government was addressing, but as I said --
Mrs Boyd: He said sending to jail, so obviously it was.
Mr Winninger: Yes. Even on a reasonable burden of probabilities there just isn't that level of expertise before the board. That's why it's so necessary, I think, that if there is going to be one member sitting on the panel, which I don't agree with -- but if there is going to be one, then I think that one member should have some expertise in evaluating capacity. I don't think the ordinary layperson off the street should be sitting in judgement of another person's capacity, especially without adequate safeguards.
The Chair: Thank you, Mrs Boyd. Thank you, Mr Winninger, your time is up. We appreciate you attending this morning.
BRANTFORD AND DISTRICT ASSOCIATION FOR COMMUNITY LIVING
The Chair: The next organization on our agenda is the Brantford and District Association for Community Living. Please could you identify yourself for the purpose of Hansard and then you may proceed. You have 20 minutes.
Mrs Eleanor Moore: Eleanor Moore from Brantford, Ontario. We represent the parents' action committee of the Brantford and District Association for Community Living and are interested in the rights, health and safety of individuals who are developmentally challenged. From the Brant county area alone, we represent approximately 250 individuals who are developmentally challenged, including our own sons and daughters, and 130 members of the association in the county.
People who are developmentally challenged used to be called mentally retarded. Whatever the label, they are individuals who represent a broad range of competency, all of whom need some type of support for daily living skills. Some require 24-hour support while others, at the other end of the continuum, may require very little support.
We ask that this committee recognize this special group of people who are developmentally challenged as having special needs throughout their entire lives. While wishing to allow these individuals the right to make decisions based on their individual level of cognitive understanding, we also want you to recognize that the majority of developmentally challenged individuals will require support to problem-solve and make decisions all their life.
Under present law, the only avenue available for these individuals to receive the support they require is for parents or family to go through the courts and have them declared mentally incompetent. This is not the solution. Parents and family need to be recognized as having the right to support a person who has the diagnosis of mental handicap in making decisions. This is extremely important in financial matters, health and medical decisions and daily living.
With current systems, we as parents often struggle to be recognized as having the right to answer or sign forms and generally make decisions with our developmentally challenged sons and daughters who are adults. In some cases, we need to be recognized as the substitute decision-maker for them.
We worry about the future when we are no longer here and are concerned about those individuals who do not currently have any family to advocate and assist them. Parents and individuals need to be able to identify another person or an agency, such as the association for community living, to act as a support in decision-making for an individual who is developmentally challenged. That person or agency would have the capacity to render a supportive role for the handicapped adult in problem-solving, or in some cases may need to be recognized as the substitute decision-maker.
Having a power of attorney is the next best alternative. However, the current system relies upon a lawyer's opinion as to whether an individual is capable or not of understanding what a power of attorney is. All individuals who are developmentally challenged would need support from family, friend or an agency to go through the process of establishing a power of attorney. The family, friend or agency would need to be accepted firstly as a support person for the decision-making process, or secondly, as the substitute decision-maker. The power of attorney is a more acceptable option than having a public trustee or guardian assigned who may or may not understand the needs of the developmentally challenged individual.
Substitute decision-making and consent for treatment are issues that affect this population currently because of negative attitudes and misinformation about individuals who are developmentally challenged. They should not have to be declared incompetent or incapable because of their disability. There is an ongoing need to support these adults in problem-solving and family are the best people to do this as we are the ones who know them and care for them. When family can no longer support our sons and daughters, we need to ensure that someone, or an agency that will care, will maintain this supportive role.
We strongly encourage you to ensure the rights and dignity of individuals who are developmentally challenged through Bill 19. Please address our issues regarding the lifelong need for support by individuals who are developmentally challenged and the fact that the need is unique to each individual. Our concerns for our sons' and daughters' financial security, health and safety, as well as acceptance as citizens, are necessary to remember in all considerations and deliberations regarding Bill 19 by this committee.
In summary, we feel that a method must be created to allow the parents or siblings and individuals who support the adult with a developmental challenge be recognized legally as an advocate and, in some cases, with the power to sign consent. If a mechanism can't be designed to meet our wishes then a far more user-friendly and less costly power of attorney be created that would recognize parents or siblings and the agencies that are the caregivers.
Lastly, the designation of incompetent and the use of the public trustee should be the very last resort.
We look forward to having our concerns regarding these persons addressed in a manner that will not only ensure that their best interests are maintained, but will also recognize family as support decision-makers. Thank you for your consideration.
The Chair: Thank you, Mrs Moore. There may be some questions. Each caucus has three minutes and we'll start with the opposition.
Mr Duncan: Thank you for your presentation. Families of developmentally challenged individuals, in my experience, are very concerned especially where there is not necessarily going to be support after the primary caregiver or support person is gone. Is it fair to say that's part of what you're relating to here today?
Mrs Moore: That is part of it, yes.
Mr Duncan: Another question I wanted to ask, because I'd like to get this on the record at committee hearings: Are you familiar with the health and safety orders that have been issued against the Windsor community living association?
Mrs Moore: No, I'm not.
Mr Duncan: Basically they're suggesting the use of guidelines that would allow the use of restraints and so forth, in community living facilities. We've asked the Minister of Labour to intervene and provide conciliation and they've not yet responded.
But I wanted to ask you -- back to this then, if you're not familiar with those orders -- in your view, can you spell out any specific changes you would make to make this bill more acceptable or that would address your concerns in a more complete fashion?
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Mrs Moore: Well, personally I feel that if a person has the medical diagnosis of mental retardation, developmental challenge, whatever label we want to put on it nowadays, they would be able to have a form that would allow them to have parents or an agency act as their power of attorney, I guess --
Mr Duncan: Their trustee.
Mrs Moore: -- their trustee without having to have them declared mentally incompetent, because many of them just need that support and the way you explain things. Parents, families or the agency that they're dealing with know how that particular person understands things, how you have to present them to that individual for them to understand, where lawyers or whatever don't understand that, by and large.
Mr Duncan: Your organization has identified, I'm sure, organizations and others that would be in a position to provide that kind of a trusteeship for members and their families.
Mrs Moore: At this point, because it's the developmentally challenged we are dealing with, we have only recognized the Association for Community Living, but I presume there are other agencies too.
Mr Duncan: I can tell you in an agency I used to run we were asked on numerous occasions if we would agree or consent to become a trustee -- unfortunately, we weren't able to because of the difficulty and the commitment involved in that -- where there was an adult whose primary caregiver didn't have anybody to succeed them, in effect. I think that's very prevalent.
Mrs Boyd: Thank you for your presentation. I think, in fairness to Bill 19, it's really important for us to recognize that the purpose is to have the public guardian and trustee as the last-resort trustee. I think the changes make it even clearer, although that was the intention of the previous legislation, that where there are family or friends who are trusted and able and willing to make decisions, they ought to be able to do that. I think the bill makes that process much easier and much less expensive for people than it was.
I think everybody appreciates the issue you raised about the sensitivity of the issue of incompetency or incapacity and what that means to people, because we've had a lot of people come before us and talk about how that feels. We understand that. On the other hand, in law the only time we want someone else to be authorized to make decisions on our own behalf is when we clearly are unable to do so. I think the language is frankly the legal description of how we make that decision that someone is unable.
Would you agree that many of the people you work with might be able to make decisions in some ways, possibly about areas of their own personal care, as opposed to property or as opposed to money?
Mrs Moore: Definitely, yes.
Mrs Boyd: The sensitivity around this is that there are two different kinds of powers of attorney and a good deal of flexibility in terms of the conditions under which people can exercise that care, so I think some of your concerns may have been met by the current legislation. It'll all depend on whether the processes and the administrative way in which it is carried out deal with that.
I also am interested in your concern round an association or an agency being able to assume this ability to look after people. There have been some concerns around the issues of conflict of interest that might occur, particularly if someone were also employed by that agency or where that agency was a primary caregiver for the person. Have you any comment on that?
Mrs Moore: Yes, I'd like to make several comments actually, but I'll start with that one. As a parent, I wouldn't feel that there was a conflict of interest, and if there was, it would be to my daughter's advantage to have someone who worked for the association or was employed by the association be the substitute decision-maker. I think that's basically what we're looking for, rather than someone out there in the community who knows nothing about our sons or our daughters or how they function.
If I could comment on the first part of your remarks, what we are finding with doctors and hospitals and even dentists is that they're saying, "Okay, this person is an adult, so I have to deal with them." Many, many times parents are just excluded. They're told, "Get out, because this person is an adult." We're really concerned, especially in the medical and safety issues, that this is going to result in dire consequences.
Mr Ron Johnson (Brantford): It's good to see you again, Mrs Moore. I want to thank you for the last time we met, in Brantford, because there's a great deal to be learned by talking to people who are directly involved. Unless we, as government, actually listen to the people who know the situations and what it's like to live with this kind of thing, we're not going to be making very good decisions without the kind of guidance that we get from people like yourself.
There's a comment you made here that I found to be pivotal in the presentation. I'll just briefly read it. It says: "There is an ongoing need to support these adults in problem-solving, and family are the best people to do this as we know and care for them." I think that's very, very important because that really is what this legislation is for. It's about empowering family members again and taking the lawyers and the paid advocates and the rights advisers and all those people who would be complete strangers to you, to try to really pull them out of situations where family is there. I think, though, we have to recognize that there are times when vulnerable individuals don't have the family supports that a lot of the people with your association are lucky to have. I guess my question would be, what sort of thing do you see happening for those who don't have the type of family support? What kind of mechanisms would be in place for those kinds of people, do you think, that we could foster in communities?
Mrs Moore: I would hope that there would be an agency that would pick up that slack, as it were. I think there are very few people out there who are developmentally handicapped who are not connected with some agency. They may not be the agency that can assume that role but can direct them to an agency that can assume that role. I don't know whether we made it clear in our presentation or not, but I guess really what we're asking is that there be a portion of this bill that is directed directly at the developmentally challenged adult, giving doctors, dentists, lawyers, all those people, a clear direction that this person has been diagnosed with this diagnosis and so this set of rules applies to them.
Mr Ron Johnson: I want to just --
The Chair: Thank you, Mr Johnson. I believe your time is up.
Mr Ron Johnson: That was quick.
The Chair: Mrs Moore, we thank you for expressing your concerns to the committee today.
Mrs Moore: Thank you for allowing us the time.
LONDON BATTERED WOMEN'S ADVOCACY CENTRE
The Chair: The next person with a submission is Cheryl Champagne, of the London Battered Women's Advocacy Centre. Good morning. Welcome.
I'd like to take this opportunity to welcome Robert Wood, the government member for London South, to the committee. Good morning, Bob.
You have 20 minutes, including questions. Please proceed.
Ms Cheryl Champagne: Good morning. In April 1995, I gave a presentation to the Ontario Advocacy Commission on the issues of violence against women and the escalated risks for women who are further marginalized by a disability or aging. I spoke of the increased risks of HIV or AIDS for women who are victims of violence. I also spoke of the additional oppression for immigrant or minority women, first nations women and lesbians who are abused by their intimate partners and face systems that do not respond to their needs. I recall being very impressed by the diversity and the calibre of the people involved with the Ontario Advocacy Commission and pleased that they were mandated to provide not only individual advocacy, but systemic or institutional advocacy as well. This meant that changes could happen that would benefit everyone, not just a select few.
The political climate has changed a great deal since that time and one of the major thrusts by this government has been to make "advocacy" a bad word. This government states advocacy is too costly. At the London Battered Women's Advocacy Centre, when people's fundamental rights to safety and dignity are at stake, we believe anything less than advocacy is too costly.
Change is not neutral. There are many sweeping changes that are being made to our province's institutions, all under the guise of fiscal management. Every day we are being told that social programs are to blame for the deficit. In fact, as a percentage of government spending, costs for social programs have decreased, ironic really when you think of the tens of thousands of Canadians who are unemployed now who were not a decade ago. One would think the cost of social programs, especially given what we've been told about spending on general welfare and unemployment insurance, would have increased. In fact, between 1992 and 1993, as a percentage of the gross domestic product, social spending represented 17%, compared to 19% in 1975.
The people of Ontario are being hard hit by changes in polity direction, but let us be clear that things not being equal, there are some people who are being harder hit than others. Statistics Canada shows that between 1987 and 1983 the richest 30% of families' share of wealth grew by $7.12 billion while the bottom half of Canadian families lost $7.3 billion. The rich cannot get richer without taking from the less-well-off. Is this what is meant by a free market economy?
Who are the less-well-off? They are the people branded as special-interest groups: people with disabilities, the aged, women, immigrants, refugees, first nations people, people who have HIV or AIDS. If they are somehow able to speak out, they are the people whose voices are discounted. This is why the Advocacy Act and the Ontario Advocacy Commission, which your government is eliminating with Bill 19, are so important.
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The Ontario Advocacy Commission was mandated to address both individual and systemic advocacy, to hear and act on behalf of individuals who could not do so for themselves, to attempt to find solutions for their needs. Bigger than that, they had the mandate to advocate for change at the systemic level so that problems could be eliminated in the long term. This government, then, is not only eliminating mechanisms for assisting individuals, but also ways and means of achieving long-term structural solutions.
Since this government's election, we at the London Battered Women's Advocacy Centre have felt an increasing resistance to the concept of advocacy. Simply, the word "advocacy" means acting on behalf of others who are not able to do so for themselves. We listen to the voices and experiences of battered women and assist them to try and end the violence that they are being subjected to in their lives. When we hear over and over again of the systemic barriers that continue to endanger women and give their partners more power, we try and do something about it. We do not want to have an endless conveyor belt of battered women. We want violence to end. This is what we mean by advocacy.
Groups working together to advocate for change have been able to positively affect the lives of many individuals in our communities over the past 20 years. As part of the London Coordinating Committee to End Woman Abuse, the London Battered Women's Advocacy Centre has worked with the police, children's aid, school boards and others to end violence in our communities. As a result of these relationships and advocating together, we have been able to effect change motivated by social justice. An example in London is that our police department was the first to lay charges in woman abuse cases, a policy that is now province-wide. It is by listening to collective voices and advocating for this kind of systemic change that we are accountable to the women we work with.
Ending violence makes sense at many levels. There are the human costs, the pain and suffering, the loss of potential that no one can put a price tag on. There are the children who grow up witnessing violence, boys who are 10 times more likely to become perpetrators and girls who are less likely to leave abusive relationships as adults, compared to children who have not witnessed woman abuse. A recent study by the Centre for Research on Violence Against Women and Children calculated the financial costs of violence as being over $4 billion. As the pendulum swings from social justice spending to tax breaks for the wealthy, the human cost factor will no doubt increase.
The Advocacy Act creates a commission that is positioned to enhance social justice for individuals and groups while decreasing long-term costs due to systemic problems. The elimination of the Ontario Advocacy Commission and other cutbacks to other advocacy groups limit and weaken the ability of marginalized groups to participate in public debate and policy development.
Our special interest, ending violence against women and ensuring justice for all people, is in the public interest. Our public interest represents more people than the business élite who earned billions of dollars while benefiting from billions of dollars in tax deferrals. Without advocacy and legal protection, vulnerable people can be taken further advantage of and suffer more than their share of the so-called collective pain we are told we must endure to get our province financially afloat.
According to the figures from the Council of Canadians with Disabilities in 1985, disabled women between the ages of 15 to 64 had a median employment income of over $8,000 as compared to $10,000 for disabled men, over $19,000 for non-disabled women and $21,000 for non-disabled men. Over 60% of disabled women were not in the workforce. The other option for people is social assistance. Recent statistics figures show that between 1985 and 1990 the percentage of all disabled Canadians on social assistance went from 5% to 12%.
It is not surprising that people with disabilities are hardest hit. When unemployment is rising and employers have a vast labour pool to choose from, they are not willing to pay the costs associated with having an accessible workplace for an individual with a disability. With the recent elimination of employment equity, people with disabilities will continue to be marginalized in the workplace. Companies are driven by profit, not social or economic justice. It is the government's responsibility to ensure social and economic justice. It is the government that is elected to represent all of its people, to advocate on our behalf.
The disparities for people with disabilities are alarming. They are much more likely to live in poverty and they are much more likely to suffer violence at the hands of those who are designated to care for them, whether they are family or professionals. In 1991, the Canadian Panel on Violence Against Women stated that in order to end violence against women we needed to promote economic equality for women. In fact, with the erosion of housing, social services and child care, fewer women are able to leave abusive partners, and women with disabilities are even less able to do so.
What we want and expect from our government is accountability and fairness. This is a huge undertaking and the reason laws and systems are created to do the job. Many of the laws being eliminated or changed by this government are effectively dismantling structures designed to ensure equitable treatment and accountability. The point I cannot make often enough is that advocacy is a necessary activity for ensuring the responsiveness, accountability and effectiveness of our systems. The goal of advocacy is to do ourselves out of business, not stay in it, and in the long run save lives and of course money. The government is in the position to be the most powerful advocator for change.
Let me share with you some of the information I gave to the Ontario Advocacy Commission last year. This information is important with respect to ensuring that checks and balances exist in the Consent to Treatment Act and the Substitute Decisions Act.
Women with disabilities are much more vulnerable to violence. Statistics from DAWN Canada indicate that of the over one million women with disabilities in Canada, over two thirds have been physically assaulted by the time they reach puberty, and one in three of these women will experience sexual and physical assault as adults, double the number for women without disabilities. Women with disabilities often rely upon others to care for their wellbeing, physical, emotional and financial.
Women who live in fear of violence are much more likely to alter their behaviour to avoid abuse, such that they do not voice their needs, preferences or opinions if they are in opposition to abusers. Bill 19 is removing safeguards in the Substitute Decisions Act, thereby giving more power and control to caregivers. With Bill 19, a witness is not obligated to state whether they believe the grantor to be incapable of giving another person the authority to make decisions for them. It is not uncommon, in abusive relationships, for abusers to try and paint a picture of the victim being incompetent to prevent themselves from being identified as abusers or from losing the benefits from having power over another person. Whether the person is an intimate partner, family member or a professional, giving someone more power with less accountability will put a victim of abuse and any vulnerable person at further risk. Bill 19 even gives substitute decision-makers the authority to approve shock treatment for another individual which, frankly, I find quite frightening.
With regard to consent to treatment, Bill 19 eliminates all requirements that rights advice or notices respecting rights advice be provided to persons who are found by a health practitioner to be incapable of making decisions for themselves. Again, the elimination of rights advice removes the extra safeguard for those who cannot speak for themselves. The Ontario Advocacy Commission makes a good point in saying that just because a right is there in the law, it does not mean that those who are marginalized or pressed are going to know about it. Every day at the London Battered Women's Advocacy Centre, women tell us how their abusive partners told them they would not be entitled to custody of their children or to financial support or equalization. That is not the law. It is in the abuser's best interests to misinform and therefore disempower a victim of abuse. The end result is that victims do not take action for themselves, as they believe they have no recourse. This is why rights advice is needed, and what we mean by advocacy. Battered women tell us that it is not safe for them to speak to their family members or friends, that they come to us because we provide confidential and professional assistance.
We have additional concerns about the way some individuals will be marginalized or discriminated against. Bill 19 excludes gay or lesbian partners from participation in their partners' needs or decisions. Family members who have a rank on the list of substitute decision-makers could make decisions on the basis of their own value system, versus the wishes of the individual, to include their intimate partner.
Bill 19 states that a language barrier or disability is not a reason to prevent emergency care, although reasonable steps must be taken to locate somebody who could provide this service. In London, the Cultural Interpretation Service that provides interpreters who are trained in crisis intervention is losing its funding. We are told we must rely on family, friends and community volunteers to do this work. It is most likely that a battered woman who requires emergency treatment at a hospital will be accompanied by her batterer. Without trained professionals to do this work, women are being put at further risk. Abusers are unlikely to tell the truth about the source and extent of the injuries.
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We have a situation where the act is setting out provisions for people when the services simply will not exist. The same has occurred with the Victims' Bill of Rights, where it states that victims of crime should have access to information about services. Again, not only are there no provisions to ensure victims get the information and learn of their rights, but many of the services are being cut back as well.
We are also concerned about the changes to the requirements of a panel making decisions about capacity. Bill 19 eliminates the requirement that at least one member of the panel must have expertise in evaluating capacity. We are concerned about a panel making these kinds of decisions without the expertise to do so. Has accountability once again been sacrificed for money? Would you want a panel of dentists to decide if you were to have heart surgery? Would you go to a real estate agent to give you advice on having your car fixed? This does not make any sense.
Unemployment, employment equity, housing, violence and abuse, social spending, interpretation services, victims' rights; you might be asking what all of these things have to do with consent to treatment, substitute decision-making and even advocacy: Everything. We live in a complex society where people's access to resources and information determines how much power they have. Bill 19 is completely about giving individuals power over other individuals who may already have little or no power. That is why the three systems and original acts are needed to work together.
I want to close by reiterating my point about advocacy. Advocacy is not neutral. Change is never neutral. What this government is doing by eliminating the Advocacy Act, and by design the Advocacy Commission, is ensuring that there are no roadblocks for the kinds of changes it wishes to make. There are sweeping changes being made that are influencing the daily lives and liberty of many Ontarians, Ontarians who will now never be heard. The Advocacy Act is a product of over a decade of work with all three political parties and many individuals and advocates from communities across the province. We are not only saddened by the loss of this progressive step, but as taxpayers we are also alarmed by the valuable investment of money, time and expertise that is being wasted and thrown away.
We are told over and over again that the changes are necessary, that they are for the future of our children. Do we not have children with disabilities? Will not we and our children grow old? Is it necessary that the financiers get rich on the backs of the poor, the disabled, the elderly, the disenfranchised?
Advocacy is a good thing; it is a responsible thing; it provides the knowledge of hearing the voices of many; it is long-term planning to promote social justice and save on both the economic and social costs. It is your responsibility as a government to advocate for those who do not have power, not those who do.
Individuals need advocacy to inform them of their rights so they can make decisions for themselves. Advocates turn to you, our government, to share what we have learned and to ask for social justice and change. When there is nowhere to turn, when we are told that justice is too expensive, we ask, if not now, then when?
The Chair: We have two minutes each. We start with Mr Marchese.
Mr Rosario Marchese (Fort York): Thank you for your presentation. You made a number of important points. One that stands out for me is, "It is your responsibility as a government to advocate for those who do not have power, not those who do." Part of my concern around this is that when you eliminate advocacy, the commission and the rights advisers, you're really removing yet one more element that could be there to support people who have no family or where the family is incapable or where the family may be abusive in some cases. That's what the Advocacy Act, in my view, did and the rights advisers do in terms of getting to the people who otherwise will have no one to turn to. They're not a solution, they're not likely to find the abusers everywhere, but they're yet another element that is there to protect the most vulnerable people.
This government is obviously committed to repealing the Advocacy Act, and it seems it wants to find other forms of advocacy that already exist in society to solve the problems we're talking about. I'm not sure; do you have a sense of what else we can say to defend advocacy, to defend rights advisers?
The Chair: Thank you, Mr Marchese, your time is up. Mr Clement.
Mr Tony Clement (Brampton South): Thank you for your views. Just for the record, when I read Shooting the Hippo, I derived different conclusions than yours, but perhaps we have different perspectives.
I did want to talk a bit about what you said on page 1, though. I just wanted to say, to alleviate some of your concerns, that we as a government are not determined to make "advocacy" a bad word. In fact, deriving our point of view from the O'Sullivan report, we think advocacy is a critical and moral duty. This is not just about dollars and cents; this is about individual moral duty to advocate. We all have this moral duty, I believe, to advocate on behalf of those who are vulnerable in our society.
I guess what I want to get some feedback from you on is, we just don't see institutional advocacy, hired rights advisers by an Advocacy Commission, as the way to go. We want to push down advocacy to friends and loved ones and your organizations, which have been very successful and very outspoken, if I can put it that way, in terms of your advocacy, in terms of systemic advocacy as well. Do you think that we're entirely on the wrong track that way?
Ms Champagne: As you know, we work with women who have been abused by their intimate partners and family members, so the concern about downloading the responsibility to individuals in the community is that there is no accountability, then, for those individuals and that vulnerable people are at much more risk of being harmed by people they know than people they don't know.
Mr Ramsay: Thank you very much for your presentation. There are a couple of things that stand out from your presentation. I share your concern in regard to rights advice, that if there is the mechanism in the act, you can appeal the decision. I would think at the very least that the person should be informed of their right to appeal that decision of incompetency.
The other thing -- I just want to get a clarification -- because the way I read the act in regard to who can give consent, in section 18 it's basically a hierarchy of people. It starts with a person's guardian, a person's power of attorney designate, a representative just for health treatment, and then it says the incapable person's spouse or partner. So it seems to me it leaves it open.
Ms Champagne: It actually says "as per the Family Law Act."
Mr Ramsay: No, it actually doesn't in section 18.
Ms Champagne: It doesn't?
Mr Ramsay: No, it does not. I just want to bring that to your attention, because I'd feel comfortable with that.
Ms Champagne: Oh, good. Thank you.
Mr Ramsay: I just wanted to say that if you still felt there was something there that bothered you, then I'd like to see it.
Ms Champagne: Okay. No, what I read, I thought it was in the act.
Mr Ramsay: But the way I've got it, I could show you that in a second, it looks like it's all right there.
Mrs Elinor Caplan (Oriole): On a point of order, Mr Chair: I think it's really important that when someone comes forward with a legitimate concern where the act clearly addresses that concern, there's an obligation of the person with carriage of the legislation to point that out to the individual, because then he or she would leave less concerned and frustrated. That's what carriage of a bill is about. I know that we have new members, but I had expected Mr Parker, who has carriage of the bill, to use their time to inform this person instead of hearing a paternalistic pontification from Mr Clement. Frankly, I was very disappointed in the government's response to this.
The Chair: Excuse me, Mrs Caplan, I think --
Interjections.
The Chair: Hold it.
Mr Parker: If I corrected every misconception that has come before this committee, we would be here all day listening to me lay out my corrections.
Mrs Caplan: That's why you are supposed to carry the bill; that's why you're here.
The Chair: I think that's out of order. If we may proceed, we now have the Persons United for Self-Help in Southwestern Ontario, Bonnie Quesnel.
Interjections.
The Chair: Could I have some order here, please. We do have to move along.
Mrs Caplan: We shouldn't have to carry the God-damned bill.
The Chair: Excuse me. Ms Quesnel?
Interjections.
The Chair: Could I have some order. I don't think this is fruitful. The point's been made.
Mr Duncan: Chair, come on, can't you control this?
The Chair: It's very difficult sometimes. We are using the time of the good people who have appeared before us.
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ACTION LEAGUE OF PHYSICALLY HANDICAPPED ADULTS
The Chair: We are going to proceed to -- well, it's not the Action League. I thought that changed.
Clerk of the Committee (Ms Donna Bryce): The Action League is going at 10 o'clock because Bonnie's still waiting for her briefs to arrive.
The Chair: Okay, the Action League of Physically Handicapped Adults. Could you identify yourself? Is it Jennifer Wilcox?
Dr Shirley Van Hoof: No. I'm Dr Shirley Van Hoof. If you have my brief in front of you, you'll see that myself and Patti Doolittle will be doing the presentation. It looks like this.
Clerk of the Committee: If I could explain, Bonnie's briefs are arriving a little bit late, so she agreed to go at 10:20 and the Action League agreed to go at 10 o'clock.
The Chair: I'm very sorry for the confusion. If you would proceed.
Ms Patti Doolittle: I'd just like to introduce myself. I'm Patti Doolittle, the chairperson of ALPHA, and this is Dr Shirley Van Hoof, the treasurer. I'll start off.
The Action League of Physically Handicapped Adults over the last 25 years has worked for the improved quality of life for persons with disabilities. This includes all the aspects of life that affect all people. After all, we are people too, with extra challenges.
ALPHA believes that Bill 19 will impinge on the rights of vulnerable people and it perhaps even violates the Charter of Rights and Freedoms.
And just a little extra thing, for the past 25 years, ALPHA has been a subcommittee of the March of Dimes of southwestern Ontario.
Dr Van Hoof: Thank you, Patti.
The rush to pass this extensive bill is disconcerting. I have only examined parts of Bill 19, and only a few direct examples of potential problems have been noted. The government needs to have a full assessment done of the impact of this legislation on real people before moving ahead. The goal should not be to change legislation so you can make it your own but to change legislation to make it serve the citizens of this province better. Bill 19 will not serve Ontario citizens well.
ALPHA believes that in Canada, and thus in Ontario, all political parties support the protection of the human rights of all citizens. This is supported by history. On December 5, 1989, as recorded in Hansard, MPP Dianne Cunningham of the Progressive Conservative Party encouraged the governing Liberals to proceed with an advocacy program. She noted the need for independent advocates for vulnerable adults. Then the New Democratic Party took office and, after due consultation, the Advocacy Act, 1992, the Substitute Decisions Act, 1992, and the Consent to Treatment Act, 1992, were passed into law.
Now the subject has become a political issue. We need you to refocus and fulfil the purpose of the aforementioned legislation, which is to enhance the dignity, autonomy and independence of vulnerable people.
Bill 19 threatens to undermine or eliminate the progress that has been gained over the last 15 years. We believe that parts of the bill may even violate the Charter of Rights and Freedoms.
Contrary to misinformed press reports, the Advocacy Act, 1992, provided assistance to vulnerable adults so that they understood their rights and could express their wishes if they had difficulty doing so on their own, for whatever reason. The act supported the development of strong family relationships, where possible. The act specifically required advocates to encourage the involvement of the family. However, if the family/caregiver was abusive, an advocate could have supplied support to assist the person to find other living arrangements in the community.
Bill 19 does not seem to have the same balance of facilitating family involvement yet keeping the safeguards in place to deter abuse of the vulnerable person. Bill 19 has the potential of enhancing the powers of those in charge while weakening or removing fundamental rights to which vulnerable people are entitled. The advocacy resource centre of London that made the presentation just prior stated this very well and I support that presentation.
Examples of concern -- and I hope you're familiar enough with the bill that these make sense, because taken out of context, as they are, and presented to fellow people that I know, it's very confusing for them, but I hope you can grasp this. The first one is Bill 19, part III, subsection 16(4), and I've noted on page 5. The ones I could find, I put the page for you:
"(4) The assessor shall ensure that copies of the certificate of incapacity are promptly given to the incapable person and to the public guardian and trustee.
"(5) As soon as he or she receives the copy of the certificate, the public guardian and trustee is the person's statutory guardian of property.
"(6) ...the public guardian and trustee shall ensure that the person is informed...
"(a) the public guardian and trustee has become the person's statutory guardian of property; and
"(b) the person is entitled to apply to the Consent and Capacity Board for a review of the assessor's finding...."
This flies in the face of "all persons shall be assumed capable." It is unthinkable that a third party can request a person be assessed and the person does not have any advice or protection before the certificate is issued. Only after the fact can the person begin to try to clear the record.
Guilty until proven innocent? I can't express how angry this whole thing makes me, because someone can ask that I be assessed. The assessor doesn't have to tell me anything about the assessment. They can go ahead and do it, and then I have to prove that I'm capable. That's wrong.
In the explanatory notes, and it quotes part II, section 16 of the new act -- I couldn't find it in the papers that I had, but it states that, "The new act removes all references to rights advisers and eliminates all requirements that rights advice or notices respecting rights advice be provided to a person who is found by a health practitioner to be incapable with respect to a treatment."
This is appalling. Even criminals have their rights read to them. The consequences of this have not been thought through.
Explanatory note 11 -- it states it's part II, subsection 27(6) of the new act; again, I couldn't find it in my papers -- states:
"Although statements by family members are not required by the new act, health practitioners are permitted to rely on assertions made voluntarily by anyone who gives or refuses consent to a treatment on an incapable person's behalf."
This assumes that the person speaking on behalf of the patient has their best interests at heart. In this day and age, I would sooner rely on the health professional's goal to "first do no harm," as the likelihood of secondary gain by the health professional is less than that of a relative.
My uncle can show up at the emergency room and tell the doctor, "Yes, I want this treatment," or "No, I don't want this treatment," if I can't speak for myself. You don't know who he is, and you assume that he likes me, or that he isn't going to inherit my millions. There are a lot of assumptions here, and this is made into law. What right do I have?
Explanatory note 17, part II, section 29 of the new act, states:
"The new act provides health practitioners and substitute decision-makers with protection from liability not only in respect of decisions concerning treatment of an incapable person but also in respect of decisions concerning admission of an incapable person to a facility for the purpose of treatment."
This attempt by the government to allow persons in positions of trust to avoid responsibility for their decisions is unreasonable. Each decision may have dire consequences for the family of the affected person as well as the person themselves, so care must be taken to be sure each decision is thought out. This will only happen if the decision-maker knows they will be held responsible. People who believe they are above reproach are more likely to abuse their power.
This again goes back to Bill 26. We give people power and then we say, "But they're not responsible." We give them blank immunity to anything. This is unprecedented power and unprecedented free-of-liability legislation. I have never seen this in my life.
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Part IV, section 75, section 8 of the act, page 57:
"(1) The public guardian and trustee may charge fees for anything done by the public guardian and trustee under this or any other act.
"(2) The public guardian and trustee shall establish the fees, subject to the approval of the Attorney General.
"(3) The fees may be calculated on a flat rate basis for each thing done, on an hourly basis, on the basis of actual costs incurred by the public guardian and trustee, as a percentage of the income or capital of an estate, or in any other manner that the public guardian and trustee considers appropriate."
These rules could be used to the person's advantage, or it could be used to decimate the person's estate. Once again, they have supreme power; they can do it any way they want. The person of the day, being the public guardian and trustee, could have a different way of figuring things and could take that person's estate and destroy it.
In summary, Bill 19 could be a very dangerous piece of legislation. After a very cursory review and only a few examples cited, I hope the government will look closely at this hastily crafted piece of legislation and have the consequences assessed thoroughly. The very essence of the quality of life and human dignity are at risk here, not only for the person but for their dependants, other family and friends.
For example, a single mother in a bitter custody battle with the father of their children is assessed at the request of her ex-husband by a doctor of his choosing. The mother and her children are at risk of mental destabilization as she fights to reassert her capability. Many unhappy scenarios could be played out, as she and her children have not had the benefit of advisers or lawyers right from the beginning of these proceedings. This is a nightmare.
I personally believe that this legislation will benefit lawyers much more than the people it is meant to protect. I regret that I did not have the time or stamina to do a more comprehensive evaluation of Bill 19. I trust that the great effort it has taken many of us to respond to the flood of government legislation will be respected and our comments and suggestions will be given serious consideration. Thank you for allowing me to appear today.
The Chair: Thank you. We have three minutes each.
Mr Parker: I want to respond to one point in particular. You said that the statute allows an assessor to declare someone incompetent without their knowing that the assessment's going on and without knowing the consequences. To satisfy you and for the purposes of the record, I want to read this in verbatim. This is section 78 of the bill. It's found on page 30:
"(1) An assessor shall not perform an assessment of a person's capacity if the person refuses to be assessed.
"(2) Before performing an assessment of capacity, the assessor shall explain to the person to be assessed,
"(a) the purpose of the assessment;
"(b) the significance and effect of a finding of capacity or incapacity; and
(c) the person's right to refuse to be assessed."
Dr Van Hoof: Why is that not where the beginning of this legislation stated -- I think it's section 16. Why is it hidden in 78?
Mr Parker: You have to put it somewhere.
Dr Van Hoof: Yes, but why not with the legislation that is dealing with it to begin with?
Mr Clement: Page 30 of the legislation, ma'am. It's in the legislation.
Dr Van Hoof: They should be together.
Mrs Caplan: But it doesn't apply to evaluators. It's not evaluation for treatment purposes, to her finding of incapacity by an evaluator. An assessor for competency, yes.
Mr Clement: Mrs Caplan will have her opportunity, Mr Chairman.
The Chair: Mrs Caplan, you're --
Mr Clement: Point of order, Mr Chairman.
Mrs Caplan: Well, you're not exactly answering --
Mr Duncan: Point of order: That only applies, section 78 --
Mr Clement: Point of order, Mr Chairman: The Liberals will have their time. I really must insist, Mr Chairman.
The Chair: Ladies and gentlemen, you seem to be rather grumpy this morning.
Mr Clement: I started off in a great mood, Mr Chairman.
The Chair: We have a number of grumpy people present today, and I'm just going to recess if this continues on. Mr Parker has the floor, and unless you have a valid point of order, please don't waste our time and waste the time of these people.
Mr Marchese: Mr Chair, may I recommend that, where necessary, we have civil servants here who could explain in a much more reasonable way, perhaps, aspects of the way this bill was drafted. You might want to call upon them quickly for a clarification.
Mr Ramsay: More accurately, too.
Mr Marchese: All right? Could you do that, Mr Chair? That would be helpful.
The Chair: Whose time is it going to be, Mr Marchese, yours? If that is your suggestion, I'll --
Mr Marchese: But if we're wasting time with the dialogue here and there, it's best to have them clarify as quickly as possible and move on.
The Chair: We're here for hearings, though.
Ms Van Hoof: But I would like clarification. If there is an explanation --
Mr Marchese: They would clarify.
The Chair: That's what we're trying to do.
Mr Marchese: They would clarify much more, perhaps less politically, and that would be easier and we could move on.
Mr Clement: On a point of order, Mr Chairman: We've heard insults from the opposition all morning --
The Chair: No, no, Mr Clement. That's not a proper -- if we want clarification, we'll ask. If you're going to permit it, then the time is going to run and it's going to possibly be your time. Now, what was the question? We'll have a member of staff --
Mr Marchese: I think she knows what she has to say.
The Chair: Good.
Ms Trudy Spinks: In the existing Substitute Decisions Act, section 16 is the one that the presenter was referring to about statutory guardianship. It does say what Mr Parker just read into the record. The reason section 54 places it in section 78 of the bill is because the previous SDA didn't apply that to all assessments and it was felt that protection should apply to any assessment under the legislation, not just assessments under section 16. So it's put into the general category so that it applies to absolutely any assessment that takes place by an assessor under the act, and not just those that are confined to statutory guardianship.
Mrs Caplan: Or an evaluator.
Ms Spinks: That's a different act. Evaluators are under the Health Care Consent Act.
Mrs Caplan: But does that apply to evaluators?
Ms Spinks: I won't speak for the Health Care Consent Act.
Mrs Caplan: Well, could somebody?
The Chair: Certainly. Could we have a comment on the Health Care Consent Act? Could you identify yourself, please.
Ms Juta Auksi: My name is Juta Auksi. I'm with the Ministry of Health. With regard to the Health Care Consent Act, if you're asking about evaluators, with respect to which kind of decision?
Mrs Caplan: The section that was just referred to that requires notice of an assessment of capacity: Does an evaluator have to notify someone that they're being assessed for the purpose of capacity for treatment?
Ms Auksi: Evaluators are not involved in consent to treatment. It would be a health practitioner. Evaluators are involved, for example, with admission to a long-term-care facility. With respect to admission to a long-term-care facility, there is a provision that rights to information relevant to that finding may be set out by regulation or could be done by policy of the long-term care --
Mrs Caplan: No obligation.
Ms Auksi: -- and this is in the regulation-making authority. There is reference to that.
Ms Van Hoof: So it's very changeable.
Mrs Caplan: The same protection isn't in the statute as it is under the SDA.
Ms Auksi: Right. I could point out that the long-term care-policy area is working now with the placement coordination services for the institution of --
Mrs Caplan: But there's no statutory obligation for that consistency?
Ms Auksi: There isn't an obligation. There's regulation-making authority. That would be in the long-term-care facility statute.
Mrs Caplan: And what about obligation on professionals who are doing capacity assessments for the purpose of treatment, is there any obligation?
Ms Auksi: Again, that is within the scope of the regulation-making authority or could be done by policy --
Mrs Caplan: So there's no statutory protection under the SDA?
Mw Auksi: Not in the statute per se and not in the Health Care Consent Act itself. The regulation-making authority is under the long-term-care facility statute.
The Chair: Thank you very much. Our time is up. If we can --
Mr Clement: Mr Chairman, I think a lot of this dialogue has been very helpful but I'm not sure whose time it came out of.
Mr Ramsay: Everybody's.
The Chair: It came out of everybody's --
Mr Clement: I did wish to reply to her concern number 3, though, because there is something in the legislation which does alleviate her concerns.
The Chair: Unfortunately, if we're going to permit questioning of the staff, that will take up all the question time, Mr Clement, I can't see anything other. Thank you very much. Your time is up.
Interjection: Thank you.
Interjections.
The Chair: If this becomes an issue, we'll have a meeting of the subcommittee to discuss it, but I'm concerned that permitting individuals who are making presentations to ask questions of us or of the staff permits them to take control of this meeting, removes it from my authority, and the difficulty is that it could be a substantial delay. That's my position.
Mr Marchese: Mr Chairman --
The Chair: We will discuss it in the subcommittee if you want after.
Mr Marchese: Then you force us to respond, because what you have to do as a Chair is to use your discretion from time to time to allow staff to clarify. We don't want long debates -- quick clarifications and we move on. That's a discretion you have as a Chair.
1020
PERSONS UNITED FOR SELF-HELP LONDON
The Chair: We have next, Persons United for Self-Help in Southern Ontario; Bonnie Quesnel. Good morning, Ms Quesnel.
Ms Bonnie Quesnel: Good morning.
The Chair: I understand we have your briefs now.
Ms Quesnel: Yes, you do.
The Chair: Good. You can proceed at any time. You have 20 minutes including any questions. Thank you.
Ms Quesnel: Persons United for Self Help is an organization which has been committed to working for advancement, integration and achievements of people with disabilities. We know the complications and difficulties which are faced by people caught up in the federal, provincial and municipal systems. These systems have lost the humanity and accountability that once protected the vulnerable. Rather than removing government from our lives and our decisions, this amended act will completely deprive us of our decision-making rights. Vulnerable people will become chattels for Ontario's already overloaded bureaucratic system. We will become pawns for brokers and paid caregivers.
Bill 19 ensures the loss of all independent advocates and rights advisers for us, the vulnerable. While we may still retain some rights, no one is obliged to tell us what they are. It's a little like having an expensive high-powered car but the instructions don't tell you how to turn it on. Like us, it's going nowhere fast. The independent advocate classification previously offered to us has now been corrupted into a playhouse for vested interest individuals/groups. An advocate should never benefit from their efforts for another. PUSH never has.
Agencies, officials, paid caregivers and experts are self-serving by nature. Their opinions are coloured by the political, social and economic bottom line, and not by human need. Their survival depends on adjusting their books to perpetuate their system and not in ensuring that people's needs are met.
This is not advocacy. These people, groups, do not always act in the best interests of vulnerable people. All this act does is simplify a means for bureaucrats to gain control over all aspects of a vulnerable person's decisions. PUSH already knows that the most vulnerable of society are being pushed, nagged, coerced or ignored into compliance. It is a tragic situation. We see it reflected in the insistent demands for "do not resuscitate" notations on our hospital files prior to taking our temperatures. PUSH members who recently sought medical support for correctable conditions, eg, hernia, bronchitis and bowel obstruction, have been asked for this DNR designation while receiving treatment.
What is even more horrifying is that if a person is tagged "incapable" no one has to tell them that their file is marked DNR. You, as able-bodied, working individuals will never be asked for this. You most likely won't be disabled and ill, frightened or in need of an impartial advocate like these individuals have been. System assumptions about your value and merit have ensured your wellbeing. Others are not so fortunate. The Latimer case has taught us that Canadian sympathies lie with the caregiver, not the victim.
Other problems we are currently seeing are:
Long-time tenants in supportive housing facilities are now being forced to sign a multipage legal contract without legal or rights advice under threat of service loss.
Individuals are being given the wrong prescription for their illnesses because assistance isn't available and no one takes the time.
People are being forced from existing community services into institutions because agencies decide and no advocate's there to speak for them or tell them their rights. There is no objective third party, only the paid caregiver's opinion. The paid caregiver may now support someone less troublesome, and because they have kept their ministry funding, nothing lost and everything to gain.
Family designated advocates are not a perfect solution either. We have seen the extremes. We know that some families nurture and assist and others hold on just to access the vulnerable person's pension dollars. There is yet another group who are caring and have no harmful intent but, because of years of being forced to sacrifice in a society that devalues their disabled child, they are fearful, overprotective and defer to professionals. It was the professionals who recommended, and families agreed, that disabled children and adults be institutionalized in facilities for the developmentally disabled and forced sterilization. Both have occurred in this lifetime and it can happen again.
We are hearing the words "quality of life" being applied exclusively to people who dare to get old, or to those with one or more disabilities. Their right to sustained health shrinks under the magnifying glass of some anonymous expert reciting antiquated positions on quality of life.
Regulated health professionals have the same self-seeking motivations as other human groupings. If Mr X is declared incapable, it will neutralize the validity of his complaints in the future. Besides, we don't have to tell him he's incapable.
A one-person appeal board is unreasonable. One person should not have all of the authority to judge capacity, appeal efforts or final outcomes. What's more, the elements used to determine capacity are not identified. Such limitations continue the system problems that people with disabilities and seniors know so well. The vulnerable won't be in the driver's seat of their lives. They won't even be able to ride in the back seat. As this legislation is now written, the vulnerable will be lucky to get a ride in the trunk.
Tell us what will happen when even more biased experts can decide who will get user-friendly focused care, or who is moved politely aside or committed to institutions? What will happen when no one truly is accountable to anyone?
Another great concern is based upon the fact that the former Advocacy Commission was empowered to note systemic problems. System problems, situations and difficulties arise repeatedly. In the absence of the commission, we are doomed to reinventing our solutions daily throughout Ontario. Our advocates will only be as good as their memory. There is now no likelihood for curative system change because there's no way to collect the data.
PUSH would recommend that instead of paying people with disabilities to stay at home, provide them with the authority, resources and salaries to advocate for themselves and each other.
The issues discussed here are very serious. They cannot be ignored. Please be responsible. Reconsider and change this legislation.
We need advocates and greater protection. Currently, this society allows us to participate only as burdens, not as resources. In your desperate need to gain control of fiscal problems, do not let history repeat itself.
Economic upheaval was the root cause and excuse for many shameful acts in this century. Society, which includes professionals and family members, has institutionalized, sterilized, denied rights to and denied independent living to people with disabilities. Such actions are wrong. When this is over you can go back to Queen's Park and you may deny these realities, but we live with them day to day and we cannot ignore them.
I thank you.
The Chair: Thank you very much. There will be three minutes per caucus.
1030
Mrs Caplan: Thank you very much for an excellent presentation. It's nice to see you again. I think you've raised a number of very important issues, particularly the one that you've raised which I haven't thought of quite as significantly, and that is that if a person is tagged incapable, in your words, by a professional prior to treatment they could turn to someone and get a DNR order put on their chart, and that someone could be from their family who has devalued them and abandoned them, unless they had a power of attorney for personal care.
The significance of that is absolutely profound, and I must say that it's extremely important for people to have in place a designated substitute they're comfortable with, because that implication is so serious. We've talked about the need for education. I know there are very few people who have actually made that clear designation of substitute decision-maker. I don't think they realize the importance of that.
Ms Quesnel: They should.
Mrs Caplan: I agree, and that's an important message. I hope the government will do that kind of education so that people will understand the implications. At the very least, I think there is an obligation for them to include in this legislation the same requirement, perhaps not in the same detail. They have it in the Substitute Decisions Act, that before you are assessed for the purpose of capacity and guardianship you have to be told you're being assessed, you have to be told the finding of the assessment and of your right to appeal. There's an obligation under the Mental Health Act to do that and there's an obligation on the provincial guardian and trustee to do that.
Why is there not that same obligation on people who are professionals doing those kinds of evaluations for the purposes of treatment? The government hasn't addressed that and you've addressed it extremely well, and why that's so important, and I thank you for doing that.
The other point you've raised which we haven't really thought about -- we've heard from a number of other groups -- is that often vulnerable persons' pension cheques are controlled by their families, contrary to their wishes. I'm wondering, from your experience, how often that happens. Is that a rare occurrence or is it something that happens frequently?
The Chair: Thank you, Mrs Caplan. Mrs. Boyd.
Mrs Boyd: Bonnie, I wonder if you want to answer Mrs Caplan's question. Do you think it happens frequently?
Ms Quesnel: I think probably more than we'll ever know, really. The person, either seniors or disabled, may not even be aware of it.
Mrs Boyd: I want to thank you very much for your presentation. I must say you are a good example of how very capable people are of self-advocacy and of advocating on behalf of their friends. You make a good point, that we would be much better off if we were empowering disabled people to self-advocate and advocate on behalf of others than simply relegating them to social assistance.
You and I have talked before about this do-not-resuscitate problem.
Ms Quesnel: Yes.
Mrs Boyd: Other speakers have talked about similar concerns. I think it is a hidden sleeper in the legislation and one that people don't want to think about, because people want to believe that people will always act in the best interests. The problem is, as you point out, for many very caring people, they may think, as Mr Latimer did, that it is in the best interests to act in that way. We heard Father Lynch, I believe his name was, talk about the withdrawal of nourishment and hydration from people who may not be, but may be, in the end stages of life not being offered food any more. It's a similar kind of a thing.
You said you've had three different cases in your own small group where for issues that have nothing to do with a disability --
Ms Quesnel: Nothing.
Mrs Boyd: -- people have been asked to put DNRs on their files.
Ms Quesnel: Nothing at all to do with their disability.
Mrs Boyd: That's very disturbing and I would urge the government to be really, really clear that this is one of the possible implications of people not knowing that they've been declared incapable and someone else being able to put something like that on a file with definitely life-threatening consequences.
Ms Quesnel: Most definitely.
Mr Marchese: The government members say or will tell you momentarily that you're such a great advocate and there are so many people like you that what we need to do is encourage people like you to advocate on behalf of people like yourself, and that if we have such great people, then we don't need a government to interfere, to provide advocacy. What is your response to that kind of question?
Ms Quesnel: I believe if ever we needed advocacy, now as much as ever before, it's needed now, because of a lot of impending cuts. People are being cut in hospitals, all over the place, and people have to have the feeling that what they say matters. It matters to themselves as a person, not as a third-class citizen. It's not fair.
Mr Frank Klees (York-Mackenzie): Thank you very much for your presentation. I want to commend the work that PUSH has done. As you say in your representation, perhaps "agencies, officials, paid caregivers and experts are self-serving," and I'm assuming you're talking about a bureaucratic type of advocate, that PUSH isn't like that.
Ms Quesnel: That's right.
Mr Klees: And that's what we're trying to encourage. I just want to get back to something that Ms Caplan made reference to, and I consider really very serious. I'll read to you from your presentation where you say, "PUSH members who recently sought medical support for correctable conditions, eg hernia, bronchitis and bowel obstruction, had been asked for this" do-not-resuscitate "designation while receiving treatment." Do you have personal knowledge of this actually taking place?
Ms Quesnel: Yes, sir, I do, and this happened here in London.
Mr Klees: I believe members of this committee share my very serious concern about this. I consider that to be a very serious breach of professional conduct, and I would like to follow this up with you so that we can get some details from you to ensure that this kind of activity is looked into, because certainly this is very serious.
Ms Quesnel: Yes, we know. There are a lot of people out there with disabilities who, even when they're asked to go to the hospital, are refusing to go because of this.
Mr Klees: We will follow that up with you. I think it's important for you to understand that certainly this government is not prepared to stand by and allow this kind of thing to happen in our community. We will be in touch with you. We ask you perhaps to prepare the details for us so that we can take some initiative on this with you.
Ms Quesnel: Okay.
Mrs Boyd: Mr Chair, on a point of order just with relation to that: I think the members ought to be aware that this has been asked for before and the individuals concerned feel so vulnerable that they have been reluctant to come forward. I hope they will now, but I also hope that if they don't, then in a systemic way we can deal with this, because individual complaints are not the issue here. This is a systemic problem and we may end up being responsible for dealing with it in a systemic way.
Mrs Helen Johns (Huron): I just want to draw your attention to one your pages that starts with "Too Much Power": "A one-person appeal board is unreasonable. One person should not have all of the authority to judge capacity, appeal efforts or final outcomes." I just want to draw your attention to section 78, and I know you don't have your act here, but it basically says that there's an appeal mechanism if you're unhappy with what happens with the one-person board. I just wanted to draw to your attention that there is another mechanism that will allow for appeal process. So that's just not quite the way the act reads, okay?
The Chair: We thank you very much for attending this morning.
Mrs Caplan: On the point of order, Mr Chair: It might be helpful, given Mr Klees comments, if we asked the College of Physicians and Surgeons whether or not they would consider that professional misconduct, because they are a self-governing profession, and I think that would be helpful to your deliberations.
Mr Klees: Certainly, they would be brought into these discussions.
Mrs Caplan: The committee could request that or you could request that.
Mr Klees: Clearly.
Mrs Caplan: They are the ones who govern what's professional misconduct for doctors.
The Chair: Is there any concern about proceeding in that manner? We shall do so. We would appreciate your communicating, in some method, the specific instances so this committee can follow it up. We really do appreciate your attendance.
1040
JENNIFER WILCOX
The Chair: Jennifer Wilcox. We should have received Ms Wilcox's brief. You have 20 minutes. Would you please proceed.
Ms Jennifer Wilcox: I suppose I would consider myself a voluntary advocate if I look at the choices I have made in my life. Over the years, I have continued to find myself incensed with the unfair treatment of a fellow student or employee, a friend or acquaintance. And before I realize what I'm doing, I'm going through the process of what I now understand to be advocacy.
I am gravely concerned with the government's decision to repeal the Advocacy Act, not to mention my concerns with respect to the proposed Health Care Consent Act. I can only speak from personal experience, and although I could speak to the needs of varying types of individual persons, I will concentrate on my experiences which led to the formulation of most of my current opinions where advocacy and human rights violations are concerned. These experiences involved the care and treatment of my mother.
How did I come here today? What made me feel the need to address this committee and express my concerns about the plight of vulnerable people? No, I am not a health care professional, nor am I representing a special-interest group. I am simply the daughter of a dead woman, who during the last half of her life, slowly and agonizingly lost faith in the health care system.
A registered nurse by profession, my mother spent many years in her early life wanting to help people be well within the system that failed her. As an ill person, she was loyal, to her detriment, trusting, naïve, vulnerable. To her, doctors were gods who would never prescribe a treatment that was not necessary or be too busy or unethical to neglect the needs of their patients.
My mother, in my humble opinion, had the misfortune of putting her quality of life in the hands of a few less-than-compassionate physicians in the diseased phase of her life. My mother's family also trusted the health care system to provide her with the services to which they felt she was entitled.
As a teenager and young adult, I watched helplessly as my mother became increasingly dependent on prescription psychiatric drugs. My mother died of cancer, but when she died, she died a prescription drug addict. A resident oncologist at the Princess Margaret Hospital, where my mother died, felt the need to inform me that the lithium she took for years had irreparably damaged several of her internal organs, to which I replied, "Tell me something I don't already know."
I won't waste a lot of your time with details of my mother's death. Suffice it to say that my mother may have benefited from the services of an advocate, such as is described in the Advocacy Act. My mother's self-proclaimed familial guardians were, at best, people who loved her very much; at worst, they were people who were unaware and uninformed with regard to available services and treatments in existence for a person in her condition. Truly ignorant, either through blind faith or simple immaturity, my mother's relatives stood by and watched her life end. She had much to offer her community and was loved by everyone who had the privilege to know her, but her disease denied her the luxury of caring for herself.
Her disease crippled her to the point where she became vulnerable enough to be abused. An advocate may have been able to sufficiently educate my mother as to her rights and obligations with respect to her personal care. An advocate may have been able to enlighten my mother's family as to their rights and obligations with respect to her care. An advocate may have been able to act as a liaison between my mother, her family, the guardians when necessary, and the health care professionals tasked with the ominous job of identifying and curing my mother's disease.
As it happens, we'll never know if an advocate would have made any difference in the quality of my mother's life because she's no longer here. I will not, however, remain silent if I believe there are other people who are subjected to the pain, suffering and dysfunction which results from the witnessing of atrocities with respect to the maltreatment of vulnerable persons.
I can only imagine how I must have appeared to my mother's doctors. If their treatment of me was any indication, they perceived me to be an imbecilic obstacle to their cause. I could really have used the help of an advocate during my attempt to understand the system's treatment of my mother. As a naive 16-year-old who had fooled herself into thinking she could help her mother, maybe I could have been spared the school of hard knocks if I'd run into an advocate.
My crash-course induction into the world of health care provision for the psychologically vulnerable was at times excruciating, to say the least. If some form of organized advocacy exists, perhaps other people can be spared the agony of either being abused or neglected or of witnessing such intolerable treatment.
My mother was fortunate to have many caring and compassionate health care providers over the years as well, and I am grateful to all of them for restoring my often dwindling faith in the health care system. My concern is with those service providers who are actually, I hope, a minority. Albeit questionable treatment may seem rarely to occur, experiencing it or witnessing it is detrimental to the wellbeing of all involved in such a situation.
Instead of being seen as someone who knew and understood my mother and her condition, I was treated as an annoyance that interfered with the doctors' mechanical dismantling and reworking of my mother's psyche. Due to my experiences in dealing with more than a few of my mother's doctors, it was very difficult not to generalize and assume that all psychiatrists were service providers who attempted to placate me by insulting my intelligence with their close-minded and condescending attitudes. Perhaps an advocate would have helped me to deal more effectively with these people who were tasked with the responsibility of helping my mother.
To her doctors, my mother appeared to be nothing more than a unidimensional, biochemical organism who cooperated as any good and compliant specimen would. If she wasn't seen as a whole person, then theoretically the violation of her rights was somehow more acceptable. If the thinking, feeling side of a person is neglected, then over time that side becomes non-existent. Apathy over personal care is perpetuated in vulnerable persons because they are often treated as if their personal care is unimportant or secondary to the care of less vulnerable people. For these demoralized and therefore vulnerable people effective advocacy is crucial.
One could argue that my mother was a cog in the psychiatric machine. One could also argue that much of the current medical systemic theories are close-minded and can at times actually perpetuate rather than cure disease. My mother existed in a state of learned helplessness. Family, friends and others who cared for her watched also helplessly and frustratedly as she slowly and painfully withered away. I recognize her responsibility for herself and I also recognize my responsibility as her daughter, as a family member involved in her care. But what of the responsibility of the doctors, the hospitals, the health care system, and the government, for that matter?
The breakdown in communication between and among health care providers, not to mention the often less than perfect communication between health care providers, patients and their families, through little or no fault of their own, results in human rights violations. Health care personnel who are overworked, burned out and feeling unappreciated will eventually go beyond low morale mode to survival mode. The bottom line is this: Without progressive, proactive legislation and regulations, what ends up being compromised is the quality of life and even the life safety of patients receiving services provided within the health care system. Would any of us wish to be at the mercy of such a system?
Using the field of psychiatry as an example, the psychiatric political correctness where health care professionals are discouraged from expressing their concerns with respect to the care of patients; the arrogance of some narrow-minded doctors who insult the intelligence of patients and family members through their blatant disregard for the patient's and family's desire and need to help and be involved in the decision-making processes where the patient's recovery is concerned.
Falling through the cracks in the system -- it's a catch-22, and it's a shame to me to think that there's a perceived need to defend oneself against a system created to help people. Vulnerable people feel incapable of defending their own rights for their own personal reasons, whether that's low self-esteem or low self-confidence as a result of poor life circumstances; anxiety or ignorance as to their rights; blind faith; detrimental loyalty to less than ethical health care professions. If elected officials within the provincial government create legislation in an ill-informed and ignorant manner, if politicians are ignorant to the plight of vulnerable persons, how can we expect to have quality legislation?
Legislation and regulations are minimal requirements. We, as a province, need to strive for the optimal care and treatment of all Ontarians. Such legislation should exist to promote respect and dignity for vulnerable persons, without violating their rights or compromising their care. The proposed Health Care Consent Act is comprised of violations just waiting to happen. Situations involving conflict of interest on the part of health care practitioners or guardians could become commonplace. How do you legislate subjectivity? Legislation is always open to interpretation. It can be interpreted or misinterpreted, used or abused. Care must be taken to ensure that legislation is not used as a tool against those it is intended to protect.
1050
The proposed Health Care Consent Act is limiting. What about peripheral vulnerable persons who are not involved in the health care system, for example, children and parents versus the board of eduction in a problem situation? The Advocacy Act allowed for the representation and the regulation of that representation of all vulnerable persons. The Advocacy Act is a progressive, proactive attempt to prevent or at least lessen the likelihood of human rights violations.
On some level, animal rights issues get more recognition and support than the rights of vulnerable persons. Why do I think that is the case? In my humble opinion, seeing, hearing, acknowledging or recognizing the fact that human beings are being violated even still, at this point in time, is frightening and overwhelming. It seems unthinkable. Perhaps people think that if they don't think about it, it'll go away. Maybe pretending that atrocities don't exist right here in Canada allows people to sleep more easily at night. Detachment, coldness and denial are all coping strategies to deal with our less than perfect world. Fear of difference, fear of pain, suffering and adversity can and often does lead to disgust, intolerance and discrimination against vulnerable persons and therefore the acceptance of human rights violations.
Being vulnerable has become stigmatized. Lip-service to the protection of vulnerable persons seems to have revived the old adage that only the strong should survive. If this is the case, has society progressed or regressed? What would be the point in participating in such a regressive and fair-weather society? It almost makes transient living seem palatable. No one owes anyone anything. Rely on no one but yourself and hopefully you can trust yourself, if not your community.
With respect to concerns regarding money issues, bureaucracy relating to the Consent to Treatment Act, the Substitute Decisions Act and the Advocacy Act, consider the pendulum analogy: Before these acts existed, the pendulum swung to the right and human rights were violated. Then over the last five to 10 years with the political correctness trend came a pendulum swing to the left, and again human rights were violated.
Can we learn anything from these extreme tendencies? Instead of waffling back and forth with constant fighting between and among political parties and special-interest groups, why not carefully and thoughtfully look at what has been created over the past 10 years? Before discarding the Advocacy Act, look at what is good about it.
Even capable people have vulnerable moments in their lives. Even well-meaning statutory guardians or personal powers of attorney, not to mention health care professionals, have moments of indecision. Where family members are in a position to make contentious, controversial, life-altering and even potentially life-threatening decisions, it is, as I hope you can imagine, a situation not uncomplicated by personal attachment and emotional involvement.
Advocacy, with or without the Advocacy Act in place, will continue because there are people in our communities who care enough to work on ensuring fair and just treatment of vulnerable persons. If there is no act, at the very least perhaps prescribed or recommended advocacy theories and practices in the form of regulations affiliated with another act could exist. Although advocacy may seem like common sense to a lot of us, good sense is not always common and ethical treatment of vulnerable persons is not always the rule.
These questions that I'm about to pose are directed at elected and government officials determined to repeal the Advocacy Act. These personal and rhetorical questions are meant simply to provoke thought, which may or may not lead to positive action in the best interests of vulnerable persons.
Have you ever had an adverse day in your life? Have you ever felt vulnerable to the point where you perceived that you were at the mercy of others? Have you ever been a party to despair, anguish, desperation or been crippled with fear? Have you ever questioned the fibre of your very being? Have you ever known poverty?
Have you ever known, loved, cared for or been involved with a vulnerable person? If so, have you ever been a party to systemic abuses which resulted in rights violations of that vulnerable person or yourself? If not, can you empathize even enough to at the very least rework the proposed Health Care Consent Act? This proposal, as it currently exists, will not protect the rights of vulnerable persons.
This, as with every other social issue facing the province right now, is a money issue being masked so as not to appear to be a budgetary issue. What motivates people in power to alter otherwise necessary social services? Money. Power can be used or abused and greed can distort an otherwise well-meaning person's morality. Can we trust the politicians in the currently elected government to act in the best interests of Ontarians? I hope we can, but like more and more people in this province, I am becoming increasingly concerned about the social welfare of this province. What will be the point of having a balanced budget if there are no healthy people living in this province to celebrate that day?
The proposed Health Care Consent Act appears to be more protective of health care practitioners, guardians, attorneys and the health care system in general than the rights of vulnerable persons whose consent is in question. Statements to the effect that the Advocacy Act is expensive and bureaucratic are an example of the propaganda spouted by politically motivated individuals in an attempt to justify rash decisions to step back into the dark ages of questionable or non-existent social service provision for the citizens of Ontario.
There is as much a need for advocacy today as there ever was. Unless and until attitudes change and rights awareness is increased, the rights of vulnerable persons will continue to be violated. We are all at risk of becoming vulnerable persons. Advocacy is not just something that someone else needs. The day may come when you are vulnerable. Who will help you to know, understand and fight for your rights? An advocate, no doubt.
Thank you for allowing me the opportunity to address this committee and for your careful consideration of people's concerns with respect to advocacy and the rights of vulnerable persons.
The Vice-Chair (Mr Ron Johnson): Thank you, Ms Wilcox. We're going to move on now. We've got about one minute per caucus, that's all, for questions. We'll start with Mr Marchese.
Mr Marchese: I just want to thank you for your presentation because it's a strong case for advocacy for those who are vulnerable. You, yourself, said that you were not treated very well as an intelligent advocate of a parent in that situation, so even you were almost discarded in that situation.
You made a strong case for rights awareness. This proposal obviously, through Bill 19, takes away that rights awareness. In fact, it's not being promoted. What we did through the Advocacy Act is to promote awareness at a systemic level and to promote the fact that there are vulnerable people who need those protections. Rights advisers were there to give that assistance. If you take that away, volunteers will not be able to do it. Even people like yourself weren't able to do it, and that's what this proposal through Bill 19 is taking away. I thank you for your personal case in this matter because that's what we need to hear.
The Vice-Chair: To the government side now; I've got Mr Clement and Mr Parker. You're probably only going to get one in.
Mr Clement: I'll try to do better, but I'll just focus in on and springboard off what Mr Marchese said. Thank you for your presentation.
If we decide to go the route of eliminating the Advocacy Commission, what would be the core of that service for you that you'd like to see still government involvement in? Would it be training and education of individuals who seek to advocate?
Ms Wilcox: That would be good. I think having some form of regulation with respect to advocacy would be a good thing. Training and education would be a good thing. Some form of government involvement would be a good thing. I don't really know the answer. I just think that what a lot of people spent a lot of time and energy and money working on to write, to create, I don't think should be thrown out. There were obviously enough people who thought it was important to work on for it to be created. It's beyond me how something like that could just be thrown out without any further consideration, because obviously there must have been a perceived need at some point in the last 10 years for there to be an Advocacy Act.
Mr Clement: There is a need, but it's how you deal with it.
The Vice-Chair: Mr Clement, sorry, we are going to have to move on now to the Liberal caucus. Mrs Caplan, you have one minute.
Mrs Caplan: Thank you very much. I listened and I must admit I related on a personal level. My father suffered from severe manic-depressive illness most of his adult life. One of the reasons that I'm so supportive of the Psychiatric Patient Advocate Office is that it was not in place to help him and there was no one to let him know what alternatives and choices there were, nor was he even aware that he could report as professional misconduct the fact that his psychiatrist would charge him for missed appointments when he was unable to cope, and of course there was no OHIP in those days. So I'm very aware of the vulnerability of people, not only with mental disability but also with other challenges in their lives that create a vulnerable situation for them.
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I guess the concern I have is that this legislation not only does away with any kind of coordination or training or education for the development of a system of advocacy but in fact the only people who are protected by the services of the Psychiatric Patient Advocate Office with this legislation really are those under the Mental Health Act in the provincial psych facilities. It's my hope that at least this legislation will be amended to increase the mandate of the PPAO and not allow administrators to appoint potentially untrained, uncertified -- I'm just wondering if you want to comment on that.
The Vice-Chair: Thank you, Mrs Caplan. I'm sorry, we're out of time.
Ms Wilcox, I want to thank you on behalf of the committee for your presentation.
CANADIAN MENTAL HEALTH ASSOCIATION
The Vice-Chair: Next on the list is the Canadian Mental Health Association, London-Middlesex. That would be Judy-Marie Watson, as well as Alex Bezzina, the Canadian Mental Health Association, Waterloo regional branch. Good morning. You'll have 20 minutes for your presentation and you may want to leave some time for questions from the floor. You can begin any time.
Ms Judy-Marie Watson: I come before you today a representative of three diverse, conflicting stakeholders of the mental health system, having obtained, through my experience, what is sometimes perceived to be a unique perspective on mental health care. You see, I am a psychiatric consumer-survivor who, because of my recurring illness, still requires periodic access to professional medical services and the use of medication to reduce symptoms of depression that might otherwise keep me from fully participating in life.
I am also what is considered to be a family member, someone who lives with or experiences the mental illness of a loved one. Though fortunate to be part of a loving and close family unit, I have lost a niece and a nephew to suicide and am aware that others within my family are or have been in treatment for various affective disorders.
Third, I am employed by the Canadian Mental Health Association's London-Middlesex branch. I coordinate a community-based information and referral program where access to mental health services and supports is based on an individual's assessed needs and personally selected service and support goals. Through this work, I promote appropriate access to a significant component of the health care system that in recent years is forever changing, reforming, with each change and reform reflecting a need to save dollars instead of the ever-increasing need, demand and right of the individual for service and support of his or her choice.
The prevalence of mental illness is higher than that of cancer, heart disease and respiratory disease combined. For centuries, society dealt with mental illness by locking people away in asylums, an approach that insulated other citizens from the necessity of coping with sometimes bizarre behaviours. We are all aware that since the mid-1960s, long-term hospitalization has been largely discarded in favour of community-based treatment. The practice of deinstitutionalization was made possible by several factors, the most influential being development of psychotropic medications that assist in controlling, repressing and masking symptoms associated with mental illness. Implementation of patients' rights followed, leading to positive changes in legislation that allowed for the release of even more patients from hospitals and institutions, even keeping some who might be seen to benefit from treatment from ever being admitted.
With the imminent closure of even more hospital beds, a greater majority of people with a mental illness will reside in the community. Despite this, networks of services and support agencies remain slow to develop due to bureaucratic and funding obstacles. In the Utopia we have planned towards through many years of mental health reform consultation, such a network of resources should actively participate in the provision of mental health services and social living skills, enabling a person with a mental illness to live in their community of choice.
Based on the premise that a person has a right not to be isolated from the community because they have a mental illness, community mental health's role has been to provide quality prevention, referral, treatment, rehabilitation and support services without relying on institutions or hospitals unless absolutely necessary. But in the midst of all this planning and these partnerships and continued amendments to legislative policy, many of us remain confused. Hospital beds are closing at a time when it is apparently becoming easier for professionals to provide treatment. We encourage the person with a mental illness to participate in their own care, then we take away their freedom to choose or reject that care dependent on the setting at which the care will take place.
I recall participating in public consultations and other forums over a period of several years that allowed for stakeholder input towards the implementation of the advocacy, consent and substitute decision legislation. Now the current changes in legislative policies, as covered in Bill 19, allow only these few hours of public commentary. Still, it is not simply any shortcomings in legislative implementation that are the only concerns bringing us here today. The bottom line is concern about people, vulnerable people who live in the province of Ontario, vulnerable people perhaps unable to manage for themselves due to disability being once again left few viable options. With Bill 19, the same psychiatric facilities responsible to and designated by the Minister of Health or Ministry of Health, institutions that once truly controlled the lives of people with mental illness, will now apparently provide them with rights advice and evaluate their capabilities regarding admission to a care facility and assess their capacity to consent to treatment. This is a major conflict of interest.
It is recognized that care providers, including physicians and case managers, frequently see themselves as advocates for or of the patient, but as the O'Sullivan commission recommended in April 1987, the essence of advocacy must clearly be distinguished from other service roles. Defining and understanding this difference is essential in order to move advocacy and rights advice from the realm of an abstract concept to the level of a viable, concrete service.
Our provincial government must remember that people who require mental health care also require advocacy assistance, as surely now as in the not-too-distant past when they had even less knowledge of their rights. This was previously true because a patient or former patient wielded no real power individually in relation to the organizations and institutions that controlled numerous aspects of their lives. Working towards a common goal, consumers, family members and community-based services learned that individual, isolated action was but a starting point to bring about the kind of changes that make it possible to live lives of dignity and wellbeing.
When people were encouraged to work alongside their peers, building strong organizations that they could control, designing strategy, taking action and improving the quality of their lives, the role of advocacy began to change in our communities. In recent years we started on the road to individual and collective empowerment. Bill 19 takes us all a step backward. It simply eliminates all references to advocacy and advocates. We ask that you correct this. To ensure the rights and autonomy of people in the province of Ontario, the following must be taken into consideration:
(1) Accountable only to the vulnerable person and not representative of the employer or caregiver, the concept of an independent Advocacy Commission is supported by a large sector of the population of Ontario.
(2) Advocacy and the provision of rights advice must be included in any legislation relating to consent and capacity.
(3) The provision of rights advice must be removed from the jurisdiction of the Minister of Health or Ministry of Health.
(4) Vulnerable persons must continue to be assisted to understand their rights in order to express their wishes and/or consent.
In order to further demonstrate these concerns, I ask that you think of people in Ontario with a severe mental illness like schizophrenia. One in 100 people have this illness; over 3,000 people in the city of London alone. People who are actively ill with schizophrenia often have delusions -- hallucinations that have no objective source but are none the less real to them. They might believe others plot against them. They experience sudden changes in lifestyle and behaviour, and they suffer from extreme anxiety, panic, fright and confusion. These people are often highly intelligent and creative individuals, but society's tolerance for their symptoms and behaviour is quite limited.
There is nothing in Bill 19 that will make the opportunity or necessity for initial access to a health care facility an easier process for people experiencing severe schizophrenic episodes. We need to do more work in influencing society's attitude and amending the Mental Health Act to accomplish that task. However, because of Bill 19, once they are somehow presented for assessment and possible treatment, the strong possibility exists that:
(1) They will be left in the position of certainly having some rights but no way to ascertain what those rights are or how to exercise them.
(2) Capacity assessors are only required to inform about the purpose of a capacity assessment and consequences relating to findings of incapacity, but are not obligated to inform of the right to refuse the assessment.
(3) Should the person be unable to communicate due to the nature of a disability or a language barrier, the health care practitioner is required only to take "reasonable" steps to communicate or interpret prior to proceeding with treatment.
(4) They are subject to invasion of privacy as personal and clinical information about them may be disclosed without their knowledge or consent.
(5) They may be subjected to the use of restraints while in a care facility.
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What of families? Bill 19 provides an amendment as to how "family" is defined, expanding it to include people related by blood, marriage or adoption. Yet despite this expanded definition, the contribution and participation of same-sex couples is completely ignored in Bill 19. Such expansion and omissions allow for the potential situation of a distant relative making health care decisions on behalf of an ill family member without knowledge of their preferred treatment wishes or previous treatment experiences. There is great potential for other decision-making abuses.
In the perfect world, we like to think that family members will always act in the best interests of loved ones. We also know that the world is not so perfect. Some family members should be the very last resort sought in decision-making matters. Additionally, the symptoms and behaviours of some mental illnesses are such that family ties have been broken or family contact restricted for very valid reasons.
Paradoxically, many family members are the primary caregivers, sometimes a landlord and often the only personal support for loved ones with a mental illness. While family members should not be expected to do the work of paid caregivers in the provision of services and supports, this has been the reality for many. The hardest question many a family can face is what to do about a relative who persistently rejects treatment. Aging parents fear for the future, as do adult siblings. With few exceptions, family support organizations are small and still building towards larger networks. As a result, the voice of families has not always been heard by government and policymakers, less often by health care professionals. The frustrating positions of these families require clarification of issues related to decision-making and consent.
While roles, rights and responsibilities of families may seem to have been elaborated on in Bill 19, there is still far too much room for conflict. Truly responsible, caring family members will not fear or object to accountability in decision-making matters. Put this obligation back into legislation by making accountability a major component of the Health Care Consent Act, so that those who choose to can continue to protect loved ones when they are most vulnerable.
I am not a policymaker, but I do believe in rights. I choose to work in an environment that supports advocacy, autonomy, choice and protection. We look to elected officials of this province to protect the rights of every citizen and to ensure that health care is available to those who require and consent to it freely. You are our voice in this matter. Please be sure that we are heard.
Mr Alex Bezzina: I thank you for this opportunity to address the standing committee on administration of justice regarding Bill 19. I come here today on behalf of the Canadian Mental Health Association, Waterloo regional branch, and the people we support in our community. I would like to begin by making some introductory comments regarding the lack of consultation regarding both the creation of Bill 19 and the legislative steps that are quickly being taken to pass it into law and achieve royal assent.
Bill 19 is indeed an extremely powerful piece of legislation in light of its far-reaching effects on the lives of so many citizens. Ostensibly, Bill 19 was created to minimize the role of government in people's lives and to put decision-making back into the hands of individuals and families. Moreover, Bill 19 has been created in response to the concern on the part of the medical community in the province over the previous legislation. Of significant importance is the fact that in the process of creating this new bill, vulnerable people have not been consulted in any meaningful way regarding the benefits that were extended to them by the previous legislation and how these were to be altered, even though they constitute the segment of our population which will experience the proposed changes most dramatically.
In light of the government's decision to take action regarding Bill 19 without corresponding planning and consultation with vulnerable people in our region, our branch of the Canadian Mental Health Association had planned to organize a community consultation evening with our local MPPs. The evening would have provided an interactive forum for community members to come together to understand and discuss the implications of the legislation. The evening did not occur due to the speed with which this consultation process is advancing and our difficulty in arranging such a forum in a short time. It is indeed unfortunate that such forums were not initiated by this committee for the purposes of meaningful grass-roots consultation throughout the province.
I would like to utilize the remainder of our allotted time to speak to the issue of capacity in general and more specifically to section 22 of the Health Care Consent Act, 1995.
The Health Care Consent Act introduces legislation that addresses the issue of consent in two areas of people's lives that have heretofore not been subject to legislation; namely, admission to care facilities and personal care plans. In doing so, the act also provides for the possibility of incapacity to consent and consequent legal intervention in these two areas of personal decision-making.
The act makes possible the legally enforceable intervention by other parties into personal care matters such as how a person is to dress or wash, what she or he is to eat or drink, and where she or he may live or even venture. These implications would seem to belie the government's stated intention in revising the legislation at the outset, specifically the reduction of the government's role in the lives of citizens. In fact, the Health Care Consent Act does the opposite.
I will now direct my comments to section 22 of the Health Care Consent Act. Subsection 22(1) allows for the substitute decision-maker to consent on behalf of a person deemed mentally incapable to the admission of that person to a hospital or psychiatric facility for the purposes of treatment to which the substitute decision-maker has also consented. However, subsection (2) further specifies that should the admission in question be to a psychiatric facility and should the person deemed incapable object to that admission, then the consent can only be provided by either a court-appointed guardian or an attorney for personal care, but only if that attorney has been authorized to use due force.
Section 22, when considered in combination with other proposed legislative changes as well as social factors, can lead to potential abuse against the rights of citizens; namely, the long-term, enforced and unnecessary detainment of people in psychiatric facilities. Some of the proposed legislative changes that would potentially impact in this manner are as follows:
(1) The proposed deletion of subsections 46(10) to (12) from the Substitute Decisions Act and amendments to section 49, which would remove the requirement of an explanation to the affected person of a decision made by an attorney for personal care, or their right to object to such a decision.
(2) Changes made to section 50 of the Substitute Decisions Act no longer allow for a person to revoke the power of attorney and the addition of paragraph 50(2)4 would force the person to waive any rights to review the findings of incapacity. Meanwhile, the person, powerless to make changes, would continue to be forcibly treated and detained.
(3) Changes to section 9 of the former Consent to Treatment Act and the new section 16 of the Health Care Consent Act no longer require rights advice to someone who has been found incapable of consenting to treatment.
Given these proposed legislative revisions, there is great potential for people being treated against their wills, for long periods of time, and in facilities that not only alienate people from their communities and their lives, but which are also known to harbour other forms of abuse against those who are in their care.
Treatment plans have always had the potential for longer-lasting benefits when they are carried out with the full understanding and cooperation of the person, when they are carried out in non-intrusive environments, among familiar faces and things, and when the plans are supported by family members, friends and significant others in the natural environment. Consider further that the treatment in a psychiatric facility is usually comprised of receiving pills three or four times a day, seeing a doctor once every day or so, and spending the rest of one's time languishing in an unnatural setting with locked doors, strange rules and few privileges. Forced confinement to a psychiatric facility for the purposes of treatment could rarely be seen to be in the person's best interests. The very nature of forced confinement and treatment has the possibility of making a person even more resistant to treatment.
An additional concern exists: There is no legislative provision that would prevent the possible conflict of interest that would result if an employee of a health care facility were the person who performed the assessment of capacity for the purposes of treatment within that care facility. The possibility exists that employees of psychiatric facilities could find a person incapable of consent and could in turn provide information to substitute decision-makers in such a manner as to influence the decision to consent to treatment within the psychiatric facility. With the current trend to downsize psychiatric hospitals, the possibility that employees of these facilities may want to substantiate the need to keep hospital beds open and the concurrent deployment of hospital personnel into the community as members of mobile treatment teams, such conflicts of interest could potentially arise.
These sorts of conflicts of interest have already been reported in other jurisdictions, along with the criminal acts of abuse that have accompanied them. An extreme case was reported in Florida. A particular segment of a news program on ABC-TV entitled 20/20, which aired in January 1996, reported the following: Psychiatric hospital staff who were deployed into the community were shown to be entering homes of elderly people without invitation. After a brief review of the home, the staff were declaring these people incompetent. Staff then sought legal recourse to forcibly remove these elderly persons to a psychiatric facility for the purposes of treatment. These people were kept in hospital, often without the awareness of their rights or the wherewithal to contest the declaration of incapacity. They were most often released once friends or family sought assistance to have them discharged, but the process took weeks. Other criminal forms of abuse were often visited upon these people. The news reports showed evidence that would suggest these admissions were done in order for a hospital to bill Medicare, to assist these hospitals that were not as financially solvent as would have been desirable.
In light of all this, we would make the following recommendations to the standing committee regarding Bill 19:
That an amendment be made to Bill 19 that would include a conflict-of-interest clause for assessors/evaluators of capacity vis-à-vis treatment etc.
That a clause be inserted in section 22 of the Health Care Consent Act that would require a weekly review to determine whether the required treatment that was consented to by the decision-maker could be offered in a less intrusive manner; for example, in the person's home.
That section 16 of the Health Care Consent Act be amended to include a requirement that rights advice be provided to any person who has been found incapable, and that other sections be amended in like manner with respect to consent to admission to care facilities and personal care plans.
That subsections 46(10) to (12) and section 49 of the Substitute Decisions Act be amended to require independent notification to the grantor of any decision to grant the power of attorney for personal care, and further explanation regarding the right to contest.
That the new paragraph 50(2)4 of the Substitute Decisions Act be deleted in order to allow a person to apply to the Consent and Capacity Board for a review of the finding of incapacity.
The Chair: I want to thank both of you for your presentation. Your timing was impeccable. There will be no time left for questions, and I want to thank you on behalf of the committee.
The committee recessed from 1122 to 1320.
HUGUETTE OUELLETTE-TRIES
The Chair: Our first submission will be by Ms Ouellette-Tries. You have 20 minutes, if you would proceed.
Ms Huguette Ouellette-Tries: Thank you, Mr Chairman, and the committee for allowing me to be part of the hearings on Bill 19. Since I am appearing as an individual, I have taken the liberty of presenting my credentials which attest to my extensive involvement and experience related to disability issues.
I would like to refer to the third item on my biography because I just learned yesterday in Ottawa that the coordinator of the Carleton Disability Awareness Centre was to make a presentation. Of all the activist projects I have undertaken in the past, this is probably one of the most gratifying, and one of the instances where one has been able to measure the success of one's initiatives.
My presentation will address the urgent need to establish a new system of advocacy as an alternative to the repealed Advocacy Act in order to meet the immediate needs of the most vulnerable persons. As well, arguments will be presented regarding the amended Consent to Treatment Act of 1992 and the new Health Care Consent Act.
My perception of vulnerable individuals conjures up images of the poor; the homeless; victims of abuse; abandoned, frail, aged citizens; stigmatized persons with disabilities. They are the silent, forgotten or rejected segment of society. They are being denied their basic civil and legal rights and have no recourse to or resources to help them claim their entitlement to freedom of access to services. It was in the spirit of helping vulnerable persons help themselves in claiming ownership of their life that the Advocacy Commission was established. Now, with the innumerable social crises surrounding us, advocacy for the voiceless population is needed more than ever.
The more complacent segment of society is quickly becoming sensitized to the sight of the homeless and death on the streets. "It is their own fault, their choice. Why should we concern ourselves? We have our own problems to deal with and we manage on our own," say the critics.
To those who decry the fact that too much fuss is made over the homeless since so many refuse help, I want to say that armchair critics should be urged to educate themselves on the sources of their misgivings of people refusing help, for most individuals who risk dying on the streets rather than seeking shelter have lost all trust in their fellow humans. Living on the streets is their only way of clinging to their freedom and, in their way of thinking, of retaining their dignity.
This illustrates the need for a renewed Advocacy Commission, which would include people who "have walked the walk." They might best be able to reach out to vulnerable individuals and help them regain a sense of self-worth and trust in society.
"Poverty is the cause of the defects of democracy," wrote Aristotle is his treatise on democracy. This tenet is still valid in the eyes of the guru and social conscience of 20th-century economists and champion of democracy, John Kenneth Galbraith. In a recent TV feature interview, he stated that "the problem with today's free-market economy is that it lacks compassion and erodes democracy."
As citizens of a society which prides itself in being one of the most democratic and caring in the world, we should reflect on these thoughts. There are many poor and vulnerable persons among us and they are not disposable. They have basic rights which, too often, are not being respected. For this silent majority we need advocacy more than ever.
In his statement at the opening of these consultations, the Attorney General claimed that the Advocacy Act was intrusive upon the rights of individuals and the members of their families. The notion that everyone has a family or has the ability to ascertain one's rights is a utopian vision of an ideal-type society. The reality is that the majority of vulnerable persons does not have the support of a family and does not have the skills or resources to claim their rights.
It is reported that the government has suggested replacing the Advocacy Act with "a new and better system to support the interests of vulnerable people." Members of the former Advocacy Commission have already submitted a proposal outlining the possible restructuring of the commission under a non-profit corporation model. It is stated that the government is considering the proposal with the stipulation that the corporation's board members be appointed by the government.
The stakeholders should have reservations about this provision. Not only does it contradict the Ontario government's repeated claim that it is aiming at giving more power to the people, but this arrangement would also create conflicts of interest. Too often in the past, I have seen the most creative and efficient leaders of the disability community being pulled out of the activist loop to take on government positions. Inadvertently, they had to adopt the role of bureaucrat in order to secure their job. One cannot serve two masters.
The same applies to rights advisers who will be appointed by the psychiatric facilities or the ministry, as stipulated under the new act. This is also a situation of conflicts of interest, because it is not wise to challenge the practices of the employer, who hands out the paycheque.
Hence, in my view, objective representation should be sought from the communities in the selection and appointment of persons to any functions relating to advocacy for vulnerable persons.
The new Health Care Consent Act, amendments to the Substitute Decisions Act, 1992, and the Consent to Treatment Act, 1992: Under capacity to consent, the new Health Care Consent Act, 1995, states that person can be declared incapable by a "health practitioner," and among the individuals and groups listed in the act figures the College of Medical Radiation Technologists of Ontario, my former professional organization. I can attest to the fact that the training of medical technologist focuses on the theoretical and technological aspects of clinical diagnoses; it does not include the assessment of mental capacity.
As there appears to be no reference in the new act to establishing standards on assessment of capacity, one would be justified in foreseeing abuse of power by some health practitioners. Moreover, it is quite predictable that improper diagnoses of incapability will increase dramatically. It will be more expeditious to maintain the streamlining process of service delivery. In addition, recipients claiming their rights are an extreme irritant to overworked practitioners. As a result, this often leads to the "non-compliant" or even "irrational" label being recorded on the individual's records. This alone could lead to a presumption of mental incapability. Regardless or because of the individual's level of awareness, one feels totally helpless. I know; I've been there. These labels might well be recorded permanently with the introduction of the health smart card. The concept, just unveiled by the Minister of Health, is alarming.
This situation is doubly critical for persons with disabilities. It is well documented that in this instance practitioners focus primarily on the disability, which is frequently unrelated to the illness for which the individual is seeking treatment. This is even more threatening for persons who have problems communicating verbally or for individuals who have experienced any form of psychiatric problems in the past, even when treated successfully. I presume this would also appear on the smart card eventually.
It is evident why rights advisers or advocates are perceived as intrusive, as they disrupt streamlining. Furthermore, there is still a deep-rooted public belief that all health practitioners are infallible. Hence, it is far less disruptive to convince trusting family members of an individual's incapability than having an outsider intervene.
I would also like to address the electric shock therapy as aversive conditioning. Subsection 43(5) of the amendments to the Substitute Decisions Act, 1992, stipulates under subsection (12), "The guardian shall not uses electric shock as aversive conditioning and shall not give consent on the person's behalf to the use of electric shock unless the consent is given...in accordance with the Health Care Consent Act, 1995." This is a substitution to subsection 66(12) of the 1992 act, which clearly prohibits a guardian from giving consent to electric shock therapy as aversive conditioning on another person's behalf.
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However, the new Health Care Consent Act makes no reference to electric shock as aversive conditioning, but it could be implied in section 21 of schedule A as an ancillary treatment. This section gives authority to an individual to consent on another person's behalf to treatment, including ancillary treatment, "even if the incapable person is capable with respect to the necessary and ancillary treatment." This would be consistent also with item 13 of the explanatory notes, which states that "a substitute decision-maker is no longer prohibited from consenting on the incapable person's behalf to a treatment involving the use of electric shock as aversive conditioning."
Furthermore, section 21 contravenes section 15 of the new act, which states that if a person returns to capacity, and I quote, "with respect to treatment...the person's own decision...governs."
Such calculated manipulation of the act is deceitful and unacceptable. Animal rights activists are more successful at protecting the rights of animals than we, as a civilized society, do for our own kind.
The same also applies to all other forms of behaviour modification as aversive conditioning, which is also inhumane, abusive and judged to be ineffective by most competent therapists. A compelling case in point was presented by the CBC 5th Estate on January 2, 1996. The report exposed a behaviour modification treatment program using aversive conditioning and its director's practices in treating persons with head injuries. The staff of the facilities was trained to use painful physical force and abusive language to subdue the patients. "It was nothing less than torture," declared an emotional former male staff.
The treatment facilities provided by Chedoke-McMaster Hospitals were located in an isolated area. The director's professional qualifications were never questioned by the hospital's administration. Following repeated complaints by staff members to the administration and the Ontario Ministry of Health, the director resigned, but that did not prevent him from opening a private group home for individuals with head injuries. It has been confirmed that the same techniques of aversive conditioning were bring used on the residents. Following the 5th Estate investigation, the director sold the home and appears to have vanished from sight.
Another dismal facet to this project is the fact that Premier Harris gave thumbs up to this initiative. It likely fitted into the plans of having all persons with head injuries treated in Ontario rather than sending them to the US. This also points to the government's aim of supporting privately operated rehabilitation treatment centres rather than providing funding for the existing certified public facilities.
In contrast, there are a few public centres in southern Ontario where persons with head injuries are being treated successfully, but these facilities are struggling to remain in existence. Dedicated staff members, along with the clinical director and family members, use a team approach to providing treatment specific to each individual's injury. I witnessed a humane, holistic and effective model to treatment for head injuries while being a patient at St Vincent Hospital in Ottawa. Although I was there for clinical rehabilitation following orthopaedic surgeries, I had the good fortune of observing the dynamics of the head injury recovery program, as I was assigned to the same physiotherapy facilities. Individual progress was reviewed by the team on a weekly basis. Patients were allowed and encouraged to test their limitations and were not ridiculed or chastised for failures. It was okay to try again, to express frustration and to cry. In some instances, patients and staff would cry together, in the same way that joyous moments were shared. There was no isolation room, no punitive treatment, no physical force used.
London also has a head-injury ward at Parkwood Hospital. There is no doubt in my mind that the same approach to treatment is being followed, for I am aware of the model reputation of its director; she was a senior resident at St Vincent Hospital during the course of my rehab treatment there.
The purpose in describing this approach to treatment has been to demonstrate that behaviour modification through aversive conditioning is not considered by most competent health practitioners as a humane, effective form of treatment. Proponents of Bill 19 should be concerned about preventing abuse in aversive conditioning of all patients or residents of treatment facilities. There are alternatives. In my opinion, behaviour modification through aversive conditioning should be banned.
In conclusion, I would like to convey a personal message to Mr Harris. Like you, sir, I ate baloney sandwiches in my youth. In addition, I was 12 years old when I first tasted a banana. I wore hand-me-downs till I went to high school. My mother taught three generations in a one-room schoolhouse while raising 10 children. My father built our house, which still stands on the family homestead in a rural, have-not corner of New Brunswick. He served as a municipal council member for nearly 40 years. He championed social justice and advocated for the numerous poor and vulnerable members of our community. He ensured that funding was made available to shelter and feed the homeless, that nursing homes for the aged provided adequate care and that the destitute had access to essential medical care.
My parents believed in free enterprise. We lived modestly, but we were better off than many others. Whatever they gained was attained through hard work, but never, never was this achieved through exploitation or oppression of disfranchised or vulnerable people.
"This was a different era, a different world," will say the demagogues. "We must face up to the realities of global changes in order to secure a prosperous future."
But over the centuries and through many civilizations, history has shown that social justice and fair treatment of disadvantaged populations are the underpinning of thriving democratic societies.
The Chair: Thank you. We only have 30 seconds per caucus.
Mrs Caplan: Thank you very much for an excellent presentation. I think you've sent a very strong and powerful message to the government, and I hope they've heard you; I doubt it, but I hope they have.
Mrs Boyd: Thank you for coming today -- I really appreciate the effort it takes -- and for sharing your strong belief in advocacy. I know there often haven't been advocates around a lot of the issues that you and others like you have faced, and that's why we too want to see the Advocacy Commission or something that will stand in its stead established in Ontario, so we thank you for your support.
Mr Clement: Thank you very much for your presentation. I just wanted to refer to your comments about a possible replacement to the Advocacy Commission. I understand that you had conversations with Mr Reville, and there might have been a misunderstanding that had occurred, not through anybody's fault, but just a miscommunication. I want to let you know that the government hasn't got plans at this point to appoint, by themselves, commissioners to a new commission or what not. We're looking at Mr Reville's proposal and taking in the input from the communities affected. Certainly we'll have something a bit later, but we haven't decided absolutely that there are going to be government appointments.
The Chair: Thank you, Ms Ouellette-Tries, for your presentation.
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INDEPENDENT LIVING CENTRE, LONDON AND AREA
The Chair: Our next submission is from the Independent Living Centre, London and Area, Steve Balcom.
Mr Steve Balcom: Good afternoon. I think I've been here before.
The Chair: You should be experienced, then. Excellent.
Mr Balcom: One might think so. Just bear with me a sec. I move a little slowly, but I get there.
Thank you for allowing me to speak to you this afternoon. Before I begin reading my submission, I want to make a point of requesting the current status of long-term-care reform, especially in light of Bill 26 and the bill now being considered, Bill 19. We, as long-time advocates -- and anyone who is vulnerable, for that matter, whom I'm representing -- have a right to know, clearly stated, which areas of long-term-care reform are in, which ones are definitely out and which ones are being considered for repeal. To this point, we really haven't gotten a clear message from this current government. This is not to say we don't have a fairly good rapport with our local area office for long-term care; we have enjoyed in the past and still have a fairly good local rapport. What we need, as advocates, at this point in time are written reassurances about the exact status of long-term-care reform, especially in light of Bill 26 and this pending -- I hesitate to call it -- bill that we're facing at the moment. I will now proceed.
The Chair: Is there anybody who can assist us with that? Possibly after, so we don't take up your time. We'll try to get the staff to help you afterwards.
Mr Balcom: That's fine. The Independent Living Centre, London and Area, is a non-profit organization comprised of people with all types of disabilities. The obligation of each member is to help and support each other. This is done through provision of peer-mentor programs, education and resource materials, as well as program and policy design and evaluation services. Our commitment is to assist people with disabilities to live, contribute and grow in their own community.
It is our belief that eliminating independent rights advisers; assuming that paid caregivers and families always act in the best interests of people with disabilities; increasing the ease by which someone can gain control of a vulnerable person's life; and ignoring aspects of autonomy in any area -- these four actions -- will ensure that individuals with disabilities are being left unprotected and their vulnerability increased. In Ontario, criminals have greater access to rights advice and advocates than we do, especially in light of what's being considered in this current bill.
It is our perception that Bill 19 reflects government's unwillingness to accept responsibility for vulnerable individuals. This naïve posture of non-awareness creates an artificial barrier to understanding what our real experiences are. You do not comprehend the pressures, prejudice, denial and ignoring of our rights and opinions, the presumption of knowing better and abuse we have experienced at the hands of professionals, agencies, health care systems and families throughout our lifetime. I'm thinking back specifically to the presentation earlier this morning of the individual who was talking about their mother. That really hit home with me. It was valid also because they were able-bodied, so their comments had more merit than mine, as a person with a disability, because I'm a special-interest group. I just thought I'd throw that in.
Your world does not allow us the economic and social experience of adulthood and personhood that each of you have experienced. Our glass ceiling was built at birth; this bill ensures it will not be moved.
We have heard the rhetoric about what Bill 19 will achieve. However, the reality is that the outcome will mean that vulnerable people will not have a voice, it increases the likelihood that we will lose our rights to make any decisions, and it increases the likelihood of abuse. This occurs because Bill 19 ignores the need for vulnerable people to know their rights and express their wishes. It ignores the need for systematic advocates to promote the rights of vulnerable people and to identify risk situations and remedy them. Presumptions of independence are not an inherent part of Bill 19.
Contrary to popular myth, ignorance is not bliss. If one's capacity is being challenged it seems a courtesy to advise them of it. If they are fortunate, they will have someone to help them. If they are not fortunate, they will have to rely upon the fluff available to them through Bill 19. There's nothing substantive in this act that will prove a benefit to those who are truly vulnerable. We want independent advocates available when we need them and we want to know where to find them. This presumption that a person will know that they even have rights is not necessarily true. We want advocates who will not barter our wellbeing for political favour, financial gain, or convenience.
The definition of "family" is just too expansive. This is merely to illustrate a point: If Tammy Homolka had been disabled, is it possible that Paul Bernardo could have been described as a family member advocate? It's a little scary. Did Tracey Latimer truly benefit by having a family member make decisions on her behalf? We think not. We think this is one of the faultiest assumptions in this legislation known as Bill 19.
I've heard this next statement echoed time and again throughout the presentations: Paid caregivers cannot become the appointed guardians of vulnerable people. This opens the door to the potential of massive abuse of vulnerable people. Unnecessary testing, aversion therapy -- for example, cattle prods et al -- use of restraints, invasive medical procedures, experimental methods and more befall those who rely upon the goodwill of paid caregivers.
This cannot be the intent of Bill 19. Perpetuating the misery of the vulnerable is not a positive change; it is regressive. It is victimization of vulnerable people at its worst. No responsible legislator would conceive of such a diabolical plot to destroy the meagre allotments of autonomy remaining to people with disabilities.
I know these are strong words, but you've got to realize our individual and collective experience. Those of us who have lived in institutions -- and I'm speaking from personal experience -- have experienced this first hand. It is clear to me that this concept does not come to you from any person with a disability. We know better.
Bill 19 reduces the accountability of guardians. There will no longer be a necessity to file regular financial reports. Even if the vulnerable person wants to know their financial standing, it would require an expensive and convoluted procedure to obtain it. Again, it's an example of the fact there may be a mechanism there, but the reality of our financial dependence says that we won't likely access that avenue. It costs money, and that person's money is controlled by the guardian in question. It seems to me like a conflict of interest. Is a corrupt guardian going to authorize this process? I think not.
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Bill 19 removes the requirement that a guardian of a person may only use restraints or monitoring devices when it is included in the guardianship plan. This means that guardians will now be free to use restraints and monitoring devices without any accountability or even the limited oversight provided by having to outline the intention to use restraints. There are no limits. This amendment removes even the most basic protection by no longer requiring the guardian to inform the court that they intend to use restraints in their capacity as guardian and the circumstances under which they are being used. Even those responsible for incarcerated criminals must be accountable for confinements and disciplinary measures.
Previous legislation allowed vulnerable people to retain decision-making to the greatest extent possible, recognizing that capacity may vary on the type of decision to be made or the person's condition on a particular day. I'm thinking specifically of degenerative disabilities, as an example.
Bill 19 shows no respect for this concept and eliminates these requirements, undercuts the autonomy of vulnerable people and will lead to abuse. Not potentially. Trust me: It will lead to abuse. This is another example that the authors of this bill have no respect for or an experiential reference point regarding disabilities. Would people with developmental disabilities agree to this? Would people with MS offer this as a suggestion? I think not.
Bill 19 would permit a person to be admitted to a care facility without their consent or a substitute's consent in a crisis. The question is, whose crisis is it, anyway? Could it be a monetary or staffing crisis of the service provider which the individual will be blamed for? Will the lack of personal consent be ignored to serve care managers better?
In conclusion, with Bill 19 we have lost independent advocacy; we have lost rights advice; we have lost accountability to the person with the disability. We who had nothing to lose have lost it all.
The most vulnerable in society need the government to take responsible action on their behalf. That responsible action requires correct information. We will be available to help you amend or replace Bill 19. Tracey Latimer, and others whom we mourn, will not. We speak for them.
The Chair: Thank you, Mr Balcom. We have about two minutes each.
Mr Marchese: Thank you, Mr Balcom, for your presentation. I have to say to you that there are many people who agree with many of the things you have said, and the last point, on the issue of crisis and who defines a crisis and how people are left vulnerable in that situation because there's no definition of it, worries a lot of people. Your concern about the lack of rights advice has been stated by most of the deputants who have come here today. Your comment on there no longer being a necessity to file a regular financial report is something that concerns people. "Paid caregivers cannot become the appointed guardians of vulnerable people. This opens the door for abuse," is something most people have spoken about.
As a last comment, if there is this time, this government thinks that advocacy can be provided by possibly volunteers -- certainly not government, possibly volunteers. Maybe they can be trained. We don't know who they are. But do you think there can be such a system out there that could help people like yourself or people in these vulnerable situations?
Mr Balcom: Speaking from years of experience in this area, of not just myself but many other colleagues, there's a naïve presumption by this current government that the voluntary sector is going to become the fourth level of safety net. We're not that naïve. There aren't enough of us who have made it a point of training ourselves, basically, of getting the training we need. There are not enough volunteers available, and there sure as heck haven't been from this government any offers of giving grants to allow us to increase staffing to allow advocates to be hired and trained and anything else. The naïve notion that it's just going to automatically be picked up by the voluntary sector is more than naïve. In my estimation, they're neglecting their responsibility as a government.
Mr Parker: Thank you for your submissions. You've spoken quite eloquently. There are two points I want to respond to and help you out. On the fourth page of your submission --
Mr Balcom: Give me a minute to go back there.
Mr Parker: -- you have suggested that if a "vulnerable person wants to know their financial standing, it would require an expensive and convoluted procedure to obtain" access to the financial records. I just wanted to point out to you that on page 32 of the bill -- that's clause 60(c.2) -- there's regulation-making authority in there that would allow further detail to be added to the rules as to how records are to be kept and how they are to be disclosed. Your comments today will be very helpful to the draftsmen when establishing the regulations under this provision.
Another point that you made, and I want to respond to this one, is that in your submission, "Guardians will now be free to use restraints and monitoring devices without any accountability" or without limitation. Again, I just want to point out that there are limits. There are limits under the present legislation, and those limits will remain under our legislation. They are being retained, and I'm referring there to clause 66(10)(a) under the existing legislation, which we are retaining in our bill.
Mr Balcom: I thank you for the clarification, but it begs the question I must ask at this point: Why is it only when this government is pressed for an answer -- and basically I'm using a euphemism here. Why is it when you are backed into a corner and an answer demanded, it is then that an answer is forthcoming? I am not only speaking necessarily to you specifically at this point in time, and I appreciate the clarification, but why must the onus be on us to basically browbeat you into submission to get a response?
Mr Parker: We --
The Chair: Thank you, Mr Parker. Your time is up.
Mr Ramsay: Steve, thank you very much for your presentation. What I wanted to ask you is, were you consulted while Bill 19 was being drafted?
Mr Balcom: No.
Mr Ramsay: Then I would hope that the government members will keep in mind some of the suggestions you've made here. You make a very powerful statement on page 1 that we also heard this morning, that I agree with, when you say, "In Ontario, criminals will have greater access to rights advice and advocates than do we." You're right, and it's something that we in the official opposition are pushing, to make sure that you are advised of your rights. I think that's very important.
I have a question for you. You say, "Previous legislation allowed vulnerable people to retain decision-making to the greatest extent possible, recognizing that capacity may vary on the type of decision to be made or the person's condition on a particular day." Can you tell me, or could you find out for me later on, exactly where that is, because I'd like to look at that.
Mr Balcom: I'll find it out for you.
Mr Ramsay: Because I think you're right: That flexibility needs to be there.
Mr Balcom: I will definitely look into it later, but the one thing that comes to mind, and it comes back again to the Advocacy Act itself, one of the provisions under the act was that it not only speak to rights advice specifically but also impart information to vulnerable people -- okay? -- train advocates and make them aware of their rights. I think that partially speaks to your question in terms of that was definitely part of that piece of legislation. As to the specifics otherwise, I will gladly go back and figure out specifically where that came from.
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Mrs Caplan: Time for one short question?
The Chair: No, time is up. Mr Balcom, I'd like to thank you for your presentation and sharing your concerns with us.
Mr Balcom: Thanks for your time.
The Chair: Is there someone present from the Western Ontario Therapeutic Community Hostel, one Bill Cline? If there is not, we will proceed to the one slated at 2:20, the Neighbourhood Legal Services - London, Bruce Wright. You'll be next then, if you would.
Mrs Johns: Mr Chairman, I'm going to answer some questions on long-term care for him too. Okay?
The Chair: Sure.
Mrs Caplan: I don't mind if you do that on the record while the other person is coming forward, if we have a couple of minutes.
Mrs Johns: Okay. Is that what you want? I'm just going to talk to you about long-term care while you're moving back. Is that okay with you?
Long-term care has been identified as one of the areas that's of key importance to this government. The minister, within the last two or three weeks, has announced a new concept which is called the community care access centres. Basically what we're saying with that centre is that the people who have provided services in the past will still provide services in the community, that we won't be changing the services. However, there will be a different process involved in it.
We're talking about a nine-month time frame that we will be looking at implementing the new community care process. But the services that have been available in the past, for example, personal care support services or home care, will still be available in the future and will be there for the needs that the community represents. The community will have more input into what kind of services are needed and required, but we believe it will better meet the needs of the community as we proceed forward. So you're talking about a nine-month time frame here. I'd be happy to send you any information that could help you on that.
Mr Balcom: I am partially aware of what's pending. What we would need to know is, every time --
The Chair: Mr Wright.
Mr Balcom: What is pending and what is being considered to be repealed in the context of these two --
Mrs Johns: In the act itself?
Mr Balcom: The standing of the act itself in terms of what's in, what's out.
Mrs Johns: Okay.
The Chair: Mrs Johns, perhaps you could accompany Mr Balcom and give him the information he requires, if possible.
NEIGHBOURHOOD LEGAL SERVICES LONDON
The Chair: Welcome, Mr Wright. You have 20 minutes. Please proceed.
Mr Bruce Wright: I represent Neighbourhood Legal Services. It's a general service community legal clinic. We do, as I say, general service, so among our clients are what might be classed as vulnerable persons, basically outside institutions, not in institutions, with problems with social assistance, problems with their landlord, that sort of thing.
Actually, I think I'm following up on what Mr Balcom has just spoken about. This is a very modest proposal that I'm placing in front of you, and it follows up on one of the key concerns, I guess, of Mr Balcom. One of the hats he wears is that he is a director of our community clinic.
Clearly, one of the concerns is the need for some kind of communication to the person who is or may be mentally incapable of making a decision or giving consent or refusing consent. The suggestion that I make here is, and I just draft it as a suggestion, you might make a requirement in the act, by very few changes -- and I'm talking about the HCCA in particular -- to make a requirement that the person be advised of a decision that has been made, a decision as to incapacity or a decision about a substitute decision-maker, having to do with treatment or admission to a care facility or to a personal assistance plan. If you look through that, I have just mentioned the sections or the parts of the HCCA which cover them.
Under capacity, I've suggested just about where in the legislation a requirement for notice be given to the person who, in the first example with respect to capacity, has been declared incapable with respect to a treatment. I suggest that it should be a written notice. I think that would make a kind of standardized requirement so it wouldn't depend on the time or the presence of a rights adviser who might be working in the institution or an advocacy agency or whatever. At least there would be an indication that the person is entitled to apply to the board. There are two sections under the capacity part of the act, and I've suggested a number, and of course there could be renumbering at third reading for that.
There's a similar one here with respect to applications to the board in section 35. I suggest a new section right after that, and a similar suggestion with respect to admission to care facilities, in that part of the act, and on the second page, with respect to personal assistance plans.
You'll notice that in addition to the written notice that a decision is being made, that there's a right to appeal or make application to the Consent and Capacity Board, I have suggested that the person has a right to legal services or legal assistance. I tackle that directly -- this suggestion, anyway, tackles it directly -- in the final section, 73, of the draft HCCA, that the board may direct the public guardian to arrange for legal representation for a person who has made an application or is a party to an application before the board.
I have in mind here the analogy of the official guardian's practice with respect to family court actions involving children, where in a wardship or a custody matter in family court, the official guardian traditionally has provided representation for the child in question. I think a similar arrangement ought to be made for vulnerable persons in various institutions and so on under the Health Care Consent Act.
I added a very small section for your consideration. Subsections 73(4) and (5) amendments have to do with the provision of written reasons, which I think is done in most tribunals with which I have experience and I think it's very helpful to have that. Really it can be done quite simply, I think.
With that, as I say, this could be a very brief brief, I'm open for questions or discussion.
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Mrs Johns: Thank you very much for your presentation. I just have one quick question that I wanted to ask you. I'm sure my colleagues will have more.
When you were talking about the written brief, I'm interested in that. We've heard it from a couple of people and I've never had the opportunity to ask the question on that. I understand that in the past there was a time delay as a result of the written brief. Can you tell me the reasons why you would like to have it and the timing that has gone on in the past, and just give me a little history about that, if you don't mind.
Mr Wright: Are you asking about written decisions?
Mrs Johns: Yes.
Mr Wright: I find it most helpful, speaking just as a person who goes to a number of different tribunals in the province, to have reasons for the decision made. I think it's a good discipline for the board itself to clarify why it's making a decision one way or another, and it's of course helpful to the person who is directly affected by that decision. I think it's as simple as that. I don't think it's an onerous requirement on the board to write down those reasons.
Mrs Johns: In the past they've obviously known the reasons but it's the written part that you're --
Mr Wright: Well, I'm not sure.
Mrs Johns: They sit down and talk to the people when they have these board hearings.
Mr Wright: I'm not sure that you always know the reason. You know the result, but you might not know the reason for the result. If the decision is, "Yes, you're incapable," or, "No, you can't have your own personal representative," that's just the result, that's not the reason why. It's not very helpful to the person.
Mr Clement: Just to follow up and then have my colleague have the floor, in your experience on the board, do they look at the cases on an individual case-by-case basis or is there a pattern or precedent, given a certain situation, and they review what had been decided in the past?
Mr Wright: Looking at most of the boards -- I have to add that because we don't act within institutions, I've not appeared. This is something that civil lawyers, private lawyers usually get involved with, with the actual review board or the Consent and Capacity Board. But with other administrative tribunals, it is the invariable case that a written decision -- it can be short, it can be in a kind of a form or sort of a rough outline, it can be a page or two, but it does outline the decision itself and the reason for the decision. I think in any kind of quasi-judicial situation, you really have to have that. In most cases a party will request it, but why not make it a rule?
Mr Ramsay: I really share your concern here and would like to see an amendment to the act that would accomplish this, and I thank you for giving us some actually good samples to use as amendments. As the government members have said, you've talked about having it in writing. Do you also think it might be important to have that also delivered orally by the health care practitioner who is making this decision?
Mr Wright: I'm speaking of the decision of the board itself. Normally, boards retire to make their decision and it comes out within a day or two days, depending on the workload of the different boards. Clearly the health practitioner would advise the patient directly of the decision, but I think putting in the full notice there in those suggestions that I've made gets a kind of regular pattern. The regulations actually could -- work out a form for that, but it would make it an invariable case. I know how busy health practitioners are and will be, and to have something as an automatic thing that would be handed out that would be available of course for volunteers or other rights advisers who might turn up the next day, they'll know what decision has been made.
Mr Ramsay: It's my understanding of the bill that when a finding of incapacity has been rendered by a health care professional, she or he does not have to tell the patient that finding's there and does not have to notify that person of their rights to appeal that decision either.
Mr Wright: I think it should be a requirement that that be done, and I think it could be done quite simply and I don't think it would be administratively difficult.
Mr Ramsay: I think that's what we both would like to see, to do it in a simple way but make sure that people are aware of their rights, but not develop it in some sort of cumbersome bureaucratic fashion that will take time, but at least the message is delivered so the patient will know her or his rights.
Mrs Caplan: I'd like to follow up on that because I think that if you're going to hold the professionals and the providers free from any action and liability, there's got to be some accountability, aside from what everyone, I think, would just say is your right to know -- your suggestion of a form that wouldn't require all the findings but just, "I communicated with the patient and told them of the findings and the reasons and I've notified them of their right to appeal," something as simple as that, sort of a statement by the provider which is then handed to the patient, and also let's them know of their right to appeal. That's what you have in mind?
Mr Wright: Yes.
Mrs Caplan: That's a very reasonable suggestion.
Mrs Boyd: At the present time, as you probably know, there is a form, and what has been happening and what the concern of medical professionals has been is that basically there is this form which they call "Mirandizing" the patient. We heard it read out by a health professional and we got a good clue how they do it, which is really not very helpful to anybody, and they're saying that's not helpful to the patient.
I guess your suggestion of a written form, yes, in law that would be protective, it would show that in fact something had been done, but it doesn't meet that need that I think is quite sincere on the part of health professionals, that in their relationship with their patients they're doctor and patient, not lawyer and client, and basically that they would need more flexibility than that to do this. There are some physicians who don't want to do it, (a) they don't see any reason that they should do it, but (b) they just think somebody else should do it if it's going to be done at all. So there are both of those kinds of attitudes coming forward at the hearings.
It seems to me that it's lack of natural justice, if nothing else, when someone is deemed incapable and is not given the information even if that's the case, and then treatments are decided upon for them by someone else. I'm curious to know whether, if these kinds of changes don't come, if there isn't a requirement for rights advice, you think that this would stand up to a charter challenge.
Mr Wright: I don't know. Charter challenges are immense undertakings, as you know, but there certainly is a case to be made. Last week you heard from, and I've had an opportunity to read a submission made on behalf of the Advocacy Centre for the Elderly.
Mrs Boyd: That's right.
Mr Wright: You are talking security of the person and I'm not the constitutional expert who might talk about that, but clearly that is a possibility. I would hope that if the medical community felt they didn't want to be the bearer -- that this would interrupt their relationship with their patient by having to say, "I've just decided you can't make a decision," then I hope they would argue with the government and with their own boards that there ought to be someone who can do that, who could come in, the rights' adviser, which is allowed for in the regulations.
Mrs Boyd: No. The rights' adviser is what is being abolished when the Advocacy Act is abolished. The issue is that doctors objected to doing it and so the government, in putting the Advocacy Act in place, made sure those rights' advisers were arm's length and independent and wouldn't interfere in that relationship between doctor and patient. Now the doctors are saying, "We don't want rights' advisers, that interrupted our relationship, but we also don't want to do it ourselves."
Basically, what we have here is a situation where virtually every consumer of medical services has come in front of us saying, "Of course we should be informed of our rights and of course we should be informed that we have a right of appeal and how to do that," but nobody wants to do it and this government is taking away the rights advisers who did do it. We're caught in this conundrum where there is a clear division between what consumers of health services want and what providers of health services want, and somehow what ends up getting lost is civil rights.
The Chair: Thank you, Mr Wright, and I especially thank you for taking the trouble to draft the proposed amendments to the bill.
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ADULT PROTECTIVE SERVICE ASSOCIATION OF ONTARIO
The Chair: We're departing from the order on the agenda, if we could. I call Mr Dan Casey of the Adult Protective Service Association. Welcome. Thank you for arriving earlier than your allotted time so we could slot you in. I hope you have enjoyed the hearings as much as I have.
Mrs Johns: And us too.
Mr Ramsay: No sarcasm from the Chair.
The Chair: You may proceed when you're ready.
Mr Daniel Casey: I would like to introduce myself. My name is Daniel Casey, and I'm the chair of the Adult Protective Service Association of Ontario. I represent approximately 170 APSWs across the province. I have been an APSW for the past seven years, with three agencies, which includes two years working for MCSS, completing the Mount Forest nursing home initiative. I have been active on the executive for the past three years and have attended the advocacy coalition meetings on behalf of APSAO.
The primary function of the Adult Protective Service Association of Ontario Inc is to provide systemic advocacy for both adult protective service workers across Ontario and developmentally handicapped people they support. The APS program was created in 1974 by the Conservative government in response to concerns that adults who have a developmental handicap living in the community were in jeopardy of having their rights violated by citizens and professionals. The program is currently funded by the Ministry of Community and Social Services through transfer payment agencies. We work for a variety of agencies across the province.
For 22 years, APSWs have been advocating with and for developmentally handicapped adults, providing rights information, supporting them to learn the steps to effective decision-making, empowering and assisting them to plan and direct their lives within the community. It is important to note that unlike any other developmental service, APSWs receive their direction only from the individual who has the developmental handicap. As such, we come to this committee with a clear mandate to represent the people we work for, our clients, and offer our support to the submission of People First, Ontario.
We urge the committee to seriously listen to all groups of vulnerable people representing themselves or those representing under total direction of vulnerable people. These are the people that Bill 19 will impact in a very real and critical way.
Our brief is quite long, as you'll note, quite thick, so I am not going to go through the whole brief today. I will draw your attention to the articles at the end of the brief that talk about the vulnerability of developmentally disabled people in the province.
The Consent to Treatment Act and the Substitute Decisions Act were passed unanimously in December 1992, with a safeguard in place for the vulnerable people whose lives would be affected. The safeguard was the Advocacy Act. It can be reasonably assumed that if the Advocacy Act had not been part of the package with the Substitute Decisions Act and the Consent to Treatment Act, the government would have been under extreme pressure not to pass the legislation.
The rights advisers currently employed by the Advocacy Commission will finish their contracts at the end of March 1996. To date, there are no concrete plans as to who will be performing these roles in the future. It is somewhat reassuring to see that the Mental Health Act will continue to allow for the function of rights advisers, mainly the PPAO's office. It is imperative that subsection 72(4) state designation by the ministry only and remove the allowance for designation by a psychiatric facility of rights advisers.
It is unlikely, in our view, that vulnerable persons would be advised of their rights without prejudice if direct care and service providers are the persons issuing rights advice. By removing this provision, the act will continue to safeguard a conflict-free relationship between the rights adviser and the facility administering treatment.
For the duration that the adult protective service program remains in existence, APSWs will continue to provide quality, cost-effective rights advice to those individuals who have a developmental handicap and are being served with notice of guardianship application or whose capacity to consent to treatment is in question. They can only provide this role to those persons they become aware are in this position. Many developmentally handicapped adults will not receive the service of an APSW because there is no mechanism to allow for access. They will be in the jeopardy of losing their fundamental rights as a citizen of this province with no assistance to understand these rights or information on how to exercise them.
I'd like to comment on the capacity assessment process. The base line of a capacity assessment is a person with a moderate to mild developmental handicap. I think that should be noted. That's very strong; there is a strong prejudice against people with a developmental handicap in this province that believes they cannot make rational, clear choices about their own health care.
To assume that volunteers or families are able to provide cost-effective quality rights advice is presumptuous. Programs such as the APSW program and the family resource program are often the resource that families under the strain of support of a developmentally challenged individual, in an often hostile system, turn to for advocacy. It is also presumptuous to believe that families are not abusive to their challenged members. We no longer can assume that the outdated family model presented by 1950s television actually exists or ever existed. To forge ahead with a mechanism for quality rights advice will create catastrophic implications in the lives of vulnerable people.
The bureaucracy of Ontario, as well as health practitioners, the courts and many other professionals, will also be impacted by the reality of vulnerable people being streamlined into guardianship. The economic cost of these systems will far outweigh the expenditure for paid rights advisers.
There is also implied in this system of change, as suggested by the amendments to the Substitute Decisions Act, that volunteers are cost-effective and can provide quality rights advice. It is true that often volunteers who are dedicated can act in the best interests of the person they are advocating for. However, without training and experience, volunteers can often do more harm than good.
There is no mechanism to ensure that volunteers will be adequately trained to provide all the information an individual or family needs in order to have informed consent. There is also a liability issue in relation to volunteers giving inadequate or inaccurate information. Will we expect to see volunteers covered by liability insurance coverage? When providing a service for free, can we expect volunteers to take on the burden of liability insurance? Who will coordinate the training and recruitment of volunteers? These questions clearly indicate that a system which does not provide adequately for the people working within it cannot adequately work for the people it intends to serve.
In the recent discussions with the government consultant on the repeal of Bill 19, it was indicated that the government is looking at issues related to the protection of vulnerable persons against abuse. I would like to draw your attention to the charts attached from the Roeher Institute, and to the Dundas-Stormont-Glengarry Developmental Services Centre special support group home program review, and an article from the Sault Star entitled "Harm's Way." They specifically talk about the abuse of developmentally challenged people within our system and by service providers.
The most telling point in the Roeher Institute's chart, which is a breakdown of the literature on vulnerable people and abuse, is that of nurses and aides in a nursing and intermediate care facility who were interviewed, 10% admitted to engaging in physical abuse of clients. Some 40% of those same nurses admitted to engaging in psychological abuse of clients. I don't think we can ignore that.
When we put people in situations where there is a great deal of stress -- when I did the nursing home project, the nurse-to-resident ratio was one staff to 14 individuals. Under the Nursing Home Act, each person is entitled to a specific amount of time for personal care. If you have a seven-hour shift and one nurse with 14 people, that's one half-hour per individual for personal care per shift. It's hardly adequate for someone who is profoundly handicapped or a senior who is bedridden.
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I'd also note that during the press scrum following the first reading of Bill 19, one government minister was quoted as saying, "We know that service providers do not abuse the people they serve." That's quite simply not true. I believe you will see that this is clearly not the truth. Arm's-length advocates who have the authority of the minister to go into the houses of developmentally challenged individuals who report abuse is a fundamental protection issue. Oftentimes, service providers will block advocates from entering facilities and have threatened clients with eviction should they continue to engage an advocate. Protection from abuse is a right, not a privilege, and the repeal of the Advocacy Act has taken that right away. I would again draw your attention to the charts from the Roeher Institute which summarize the studies.
The government must institute a third-party rights information advice system within this act. It is terrifying to consider that the vulnerable person's only informant is the person who is attempting to remove their most basic rights.
Consider the following scenario: A person has kept their 35-year-old developmentally handicapped daughter at home since she was 21. She has already convinced her daughter that a tubal ligation would be a necessary operation, and this was performed two years ago. The step was a reaction to a binge the daughter participated in after having run away from home for a week. Now, 21-year-olds don't really run away; they elope. I can leave home and it's not running away, but when we talk about that in terms of developmentally handicapped people, they run away.
The mother now decides that she will file an application to become her daughter's substitute decision-maker for personal care. She lovingly asks her daughter if she has always been taken care of by her mother and whether she feels they have a good life together. She then states that she loves her and will always take care of her and do what is best for her. Because she loves her so much, she wants to make sure no one else can harm her -- she wants to make it legal. The daughter of course agrees.
The assessor is visited. Due to the inherent conflict the assessor has -- who pays the bill? the mother -- the implications of the assessment are described in a manner that the daughter does not fully comprehend. She therefore relies on the information her mother has given her of the assessment process and consents. The daughter cannot read or perform simple math equations.
She has been socially isolated and so has no social skills or awareness of many things in the community or the province. She has never had to make decisions on her own behalf, so she does not know the steps to make an informed decision. The week-long binge of alcohol and sex does not stand her in good stead when looking at her ability to make decisions that may lead to serious injury or bodily harm. At no time did she have access to a person who understands the process and could clearly, in a manner that she understands, inform her of this and her rights. An APSW, having learned of this, informs her of her rights and, with the woman's direction, assists her to challenge the finding of incapacity and have the guardianship removed. An assessor makes more money, and vulnerable people end up in court.
Service providers are now able to apply for guardianship by proving that no one else exists. What is the definition of a reasonable search for an appropriate person? Who will ensure that a reasonable search has been carried out? Many APSWs have supported individuals for years before family members have been located. This is quite often true with people who have spent long periods of time in institutions. One APSW noted, "I supported a lady for four years before we became aware she had living relatives," and that's often common. Again, a clear conflict of interest exists. No service provider should ever have complete control over an individual. The Ontario public guardian and trustee's office needs to assume the guardianship role in the case of no other persons willing or able -- not a service provider. This is the safety net that the province has for vulnerable people. Again, we would refer to the articles in the appendix to see why service providers should not be given guardianship over a vulnerable person.
It is also imperative that no employee of a service provider act as guardian regardless of their lack of direct contact with the individual. In some agencies, it is policy to have group home staff act as consent givers to residents living in other homes run by the same agency.
The concepts of "best interests" and "quality of life" raise concerns for persons with a developmental disability. Did Tracey Latimer have quality of life? Was her death in her best interests? Who will define what quality of life is for a person who has a profound developmental handicap? Will we witness the resurgence of eugenics?
The most common issue faced by APSWs in the field is the coerced and sometimes forced sterilization of challenged individuals in the name of best interests. In some cases, the individual is not told that they will be having a sterilization procedure performed and will be told instead that they are having their appendix removed. Imagine living in a society that tells you motherhood is a desired goal and imagine being told you cannot have this. Developmentally challenged people are capable of being good parents. Sometimes they're better parents than you or I can ever hope to be. Any person who is able to deal with the prejudice of the community and still raise a child deserves praise, not sterilization.
How do we protect vulnerable individuals from the prejudices in our society when we use best interests models? It is not too long ago that we put people in institutions because we believed it in the best interests of those who did not fit the norms of society or whom we were unable to provide for. We have environmentally stunted generations of orphans, the deaf, the blind, persons with autism, epilepsy, cerebral palsy and developmental handicaps because we thought what we were doing was in their best interests.
We as a society tend to act in our own best interests, not in the interests of vulnerable people, and this piece of legislation clearly shows this. In the era of cost-efficiency and economic uncertainty, would we be better served and protected if we repeal all four pieces of legislation, Bill 74, Bill 108, Bill 109 and Bill 110, and return to the pre-1992 era and reconsider our intent? Vulnerable people would also be better served and protected. The Adult Protective Service Association of Ontario must ask the fundamental question, protection for whom?
The Chair: Thank you, Mr Casey, for your presentation. There's no time for questions.
Mr Clement: I understand that. Could I ask our researcher? I'm very concerned about the statistics that are presented in this presentation. If I might be permitted, because I know just from my own casual reading that some of the statistics that were mentioned have been criticized, I'd like to know in particular whether the researcher can research the Pillemar and Moore document that was referred to by the presenter, and I'd like to know what the definitions are in terms of the violence that has been cited. Is that permitted, Mr Chair?
The Chair: Yes. Is there any objection to that? We will have that for the committee as a whole.
DAVID EVANS
The Chair: Dr David Evans. Dr Evans has filed a written submission with the committee. Welcome. You have 20 minutes, sir. Please proceed.
Dr David Evans: Mr Chair and members of the committee, I'm Dr David Evans and I'm appearing today as an individual psychologist. I wish to thank you for the opportunity to appear before you today to comment on some of the aspects of Bill 19.
You should be aware that I have a number of credentials and accomplishments that put me in a position to comment with some experience on several of the provisions of Bill 19. I'm a professor at the University of Western Ontario and I teach clinical psychology to both undergraduate and graduate students. I'm a past president of the Ontario Psychological Association and a member of the government affairs committee of the association. I am currently the president of the Canadian Psychological Association. I have written articles on the acts that Bill 19 will repeal, revise and amend, and I have monitored their development and implementation on behalf of the Ontario Psychological Association. I'm a practising psychologist, an academic and a researcher. My area of research is directed towards the evaluation of quality of life and the factors that determine quality of life.
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At the outset, let me indicate that all my comments will be positive with respect to the modifications that will occur with the passage of Bill 19. I believe that the changes that are envisaged to the current legislation will clarify what is a somewhat chaotic process of consent and substitution decision-making for both clients and health practitioners. Many clients and health practitioners remain confused with respect to the current legislation and Bill 19 goes some way to simplifying the process.
First, I am pleased that under section 2 of the Health Care Consent Act, 1995, members of the College of Psychologists of Ontario are included among those professionals defined as "evaluators." Practitioners in psychology have been involved in the development and administration of assessment and evaluative instruments for approximately 100 years, since before the turn of this century. Evaluation is in fact the cornerstone of our practice and it is one of the areas in which all practitioners in psychology are skilled.
Second, I would like to compliment the authors of the legislation for including a definition of "plan of treatment" in section 2 of the Health Care Consent Act, 1995, and the attendant section 12 which permits one of the health practitioners dealing with the client to propose the treatment plan, determine capacity and ensure consent is obtained on behalf of all practitioners involved in the treatment plan. This will remove considerable potential confusion and redundant communication for clients who are already distressed by their health problem.
Third, the new list of persons who may give or refuse consent on behalf of an incapable person outlined in section 18 of the Health Care Consent Act, 1995, provides clarification of a number of issues that are unanswered in the current legislation. Of particular note is the identification of the relative rights of custodial parents and parents having only right of access to children in giving consent on their children's behalf. I assume that when a parent who has only right of access presents a child for treatment, there is an obligation on the part of the practitioner to determine the unavailability of the custodial parent or, on the other hand, to ascertain that the custodial parent would not object to the decision. With respect to the latter, it might assist practitioners if such agreements concerning treatment were included in separation and divorce custody agreements, when possible.
The final set of changes that I would like to comment on relate to the decision not to include section 14 of the Consent to Treatment Act, 1992, in the Health Care Consent Act, 1995, and to repeal subsection 66(12) of the Substitute Decisions Act, 1992. These changes would permit a person as defined in section 18 of the Health Care Consent Act, 1995, to consent to the use of electric shock as an aversive conditioning procedure with an incapable person. This ability of other persons to consent on behalf of those who are incapable is essential in those cases where such procedures are the treatment of choice to maintain the wellbeing of the client concerned.
In addition to the qualifications that I stated at the beginning of my presentation, I have administered, researched and written on the use of aversive procedures in the treatment of clients with alcohol addiction and sexual deviations. While I have not used the procedures with clients with self-injurious behaviour, the principles underlying the use of the procedures with these clients are the same.
Unlike several procedures used by health practitioners, the theory behind the success of aversive procedures using electric shock in controlling unwanted behaviours has been well researched and is well understood. Electric shock is used in these procedures because it is safe, easily controlled and provides the least invasive impact on the client compared to other aversive stimuli. As a psychologist, I'm required by the standards of my profession to follow a strict protocol before administering electric shock to a client, including testing the equipment before it is used with the client. While clients are always permitted to discontinue aversive conditioning at any time, I have never, in the course of treating several hundred clients, had a client withdraw from such treatment.
What does the shock feel life? Those you who have had an electric shock in the past will know. Those who have not may wish to compare it to the act that we all carry out all too frequently; that is, touching a hot pan in the oven. The mechanism and the effect are the same: We remember not to repeat the self-injurious behaviour in the future. However, as you are all aware, some time in the future we will require a reminder. This will occur the next time we reach for the pan without a pan holder.
Those of you who had time last weekend to watch some of the Canadian figure skating finals will no doubt have observed the competitors engaging in what is called visual-motor behaviour rehearsal or mental rehearsal. If you did not observe the competitors using the procedure last weekend, then watch for it in Atlanta at the Olympics in the summer. What is involved in the procedure of mental rehearsal is the mental review of the complete set of motor actions that will be engaged in during the athlete's performance. When a therapist uses the same procedure with a client, it is often referred to as guided imagery. I would like to use guided imagery with you for just a moment.
First, I would like you to imagine that you have a helmet on and that you are in a straitjacket with your arms secured behind your back. Try to imagine yourself in this scene as vividly as you can. Imagine also that you have been like this all day. Despite the restraint, you still try to strike your head with your fists.
I'd like you to set this scene aside now and relax for just a moment. Next, I would like to imagine that you are not restrained and that you have freedom to move in your environment. Imagine that although you have not beaten your head with your fists for several weeks, you get an urge to do so. You act on the urge and you feel a very brief shock to your leg. The shock is similar to the burning sensation that you get when you touch a pan in the oven without a pan holder. As with the oven situation, you stop the self-injurious behaviour and go on to do something else.
These two scenes are based on the life of Brian Singer, whom you have already heard about. Under the present legislation, the first scene represents daily life. Under the proposed changes to the legislation, the second scene would represent daily life. I ask you, having visualized the two scenes only briefly rather than living them day in and day out, to consider which represents a better quality of life for clients who engage in self-injurious behaviour that has not come under control by any other procedure.
I would hope that you would support these changes which permit a concerned parent or other party to consent to this treatment on behalf of the incapable person, thus enhancing his or her quality of life immeasurably. Thank you.
The Chair: Thank you, Dr Evans. Each caucus has three minutes. Mrs Caplan.
Mrs Caplan: This legislation would permit faradaic therapy as a diversion technique to be done in your office outside of a Comsoc facility. Do you have any problem with that?
Dr Evans: No, I don't. I think it's pretty essential that that happen, because I have used it in my office with alcoholics, sexually deviant clients and so forth. So that I think to restrain it to Comsoc facilities -- now I think the difference probably is going to be that in a Comsoc facility, the person will be incapable, hence someone else will have to make the decision. In my office, it's usually the client who will agree or not agree to the treatment.
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Mrs Caplan: I guess it would be possible for someone in a Comsoc facility actually to go out with their family for an afternoon and stop by your office and have the treatment, wouldn't they, with this legislation in place?
Dr Evans: The question is whether I'd be working on that particular afternoon but, anyhow, I presume it would be possible.
Mrs Caplan: Do you think, for people who have been found to be incapable of making treatment decisions on their own, that perhaps an appeal to a board such as the Consent and Capacity Board before a treatment like this is permitted outside a Comsoc facility might be a reasonable limitation?
Dr Evans: I think the difficulty with that is that it makes the possibility for the treatment rather elaborate. I think also it assumes that those who may consent on behalf of the other individual may not have their best interests in mind. I think, as in any other situation, the practitioner would brief them fully on the pros and cons, the difficulties and the possibilities associated with the treatment, and one would hope that they could make a reasonable decision. In actual fact, if I may just add a clause --
Mrs Caplan: Yes, just add to that as you're answering the question. Under this legislation, practitioners would be free from any liability for offering treatment and so would the person who's consented on their behalf, even if it should be found in the future that they weren't acting in the best interests of the person who was incapable. Does that cause you any discomfort?
Dr Evans: That perhaps; I think we should all be liable for the activities that we engage in. I've always assumed that there was a possibility in the courts to pursue me if I inappropriately administered a treatment.
Mrs Caplan: The other thing is the government has stated very clearly that any time a problem's come up, they can deal with that by regulation. There's no requirement here in the legislation for there to be any consultation on regulations, for the regulations to be gazetted or people to be notified or have any waiting period. Do you think it would be a good idea if there were a requirement in the legislation that before they brought in regulations, either there should be at least the opportunity to have them publicly made available in a waiting period before they're implemented, or also perhaps some mandatory consultations? So much seems to be left to regulations. Does that concern you?
The Chair: Thank you, Mrs Caplan. If we could go to Mr Marchese.
Mr Marchese: Thank you for your presentation. I have a question which arises out of the comments you make around changes that you're happy about, which permits one of the health practitioners dealing with a client to propose a treatment plan, determine capacity and assure consent is obtained on behalf of all practitioners involved. Then you say, "This will remove considerable potential confusion and redundant communication for clients, who are already distressed by their health problem." I appreciate the fact that in some ways this simplifies it for the government because they say having one person instead of three is easier, it's easier having one than having three, and that it simplifies the process.
We've heard a number of individuals in the last week and a half, and organizations, who are very concerned about this. You have doctors or evaluators on the one hand saying, "This is really good, we thank you, government," and a number of people seriously concerned about the ability of one evaluator to make that assessment because of possible biases, because of the inability perhaps in some cases, for one person to have the whole total picture of what it takes to evaluate an individual. Unlike a court of law, where you might have a judge and 12 jurors, in this case you would only have one person dealing with the matter.
A number of people are very, very concerned about having one individual determine their life and so there is considerable contrast between yourselves and individuals who are very frightened about that. I'm not sure what your response to it is, but I'm very sensitive to their concerns.
Dr Evans: If I can respond quickly. I think, first of all, the assessment issue -- it seems to me that all practitioners are supposed to be able to assess capacity, and if we can't carry that argument then some practitioners, perhaps, shouldn't have the ability, and not be on that list at the front. That's my first reaction.
The second reaction, having been a patient on a cardiac unit where I think it wasn't three, it was about 10 different practitioners dealt with me -- in that day they didn't have to do this. To have them all seek consent every time, and on the day that I went to surgery, would have been very confusing and overwhelming. I had enough to grapple with and I would have preferred an individual.
The other point I would make is that that individual usually represents a team decision. The practitioners have all sat down and caucused with respect to what treatment plan are we going to pursue.
The Chair: Thank you, Mr Marchese. Mr Klees.
Mr Marchese: Is that three minutes?
Mrs Boyd: Is that our time? I'm sorry.
The Chair: Yes, three minutes.
Mrs Boyd: A very short three minutes.
The Chair: Well, it was a very interesting question.
Mr Klees: Thank you, Dr Evans, for your presentation. I would like to also thank you for a very logical presentation on the electric shock treatment. We, as you know and as you mentioned, had a presentation from Mrs Singer on this, a very moving one indeed. I have a couple of question for you, though, with regard to this.
We have had presentations made to this committee over the last couple of weeks from people who have been opposed to this and in the context of their presentation have used the term "cattle prod," in describing this procedure. When I hear this it strikes me in a very grating way because it seems to me to be demeaning a procedure that may be appropriate for some, and I'd like your comment on the appropriateness of describing this treatment, that obviously helps some people, that way. Does it add to the discussion in a positive way?
Dr Evans: No. It seems to me, logically we use cattle prods with cattle, and I would hope that we use treatment apparatus with clients who are human, so I would be very upset if any person working with me would use that terminology and I would actually be upset at others. This is a treatment that has a tremendous impact for those few individuals who need it, the impact being that they have a better quality of life as far as I'm concerned.
Mr Klees: Thank you. I have another question for you with regard to using the treatment in facilities outside of Comsoc facilities. Do you in your practice require a release statement signed by people with whom you use this? Do you think that would be an appropriate way of providing some guidelines? Also, do you think it would be appropriate for legislation to require colleges to incorporate some guidelines for the use of this treatment?
Dr Evans: In terms of the consent, I always have a signed consent when I'm using this procedure. I think it simply protects me and it's very specific as to what will happen.
In terms of the colleges, I think that's reasonable. Certainly the college of psychology -- we're required to obey a number of standards and those standards would take us back to the set of guidelines for the use of this procedure which are in the literature.
The Chair: Thank you, Mr Klees. Thank you, Dr Evans.
Dr Evans: Thank you.
Mrs Johns: Mr Chair, I'd like to just have a point of clarification: In the question that Mr Marchese asked, the section that they were talking about was section 12 with respect to one health practitioner being able to propose a plan for a number of people, not section 71, as Mr Marchese was talking about, which is the one-person board versus the three- or five-person board. I just wanted --
Mrs Caplan: What page is that on?
Mrs Johns: I don't have a page -- the same as you said, section 12 of the HCCA.
Mrs Caplan: I've got it. Because there are so many different acts in here, you've got to reference an act.
Mrs Johns: HCCA, section 12 as opposed to section 71. When he asked his explanation he asked it about 71 when the paper actually referred to section 12.
Mrs Caplan: My section 12 on page 70 refers to a plan of treatment.
Mrs Johns: Yes. "If a plan of treatment is proposed for a person, one health practitioner may, (a) propose the plan of treatment...."
Mrs Caplan: That's correct.
Mrs Johns: That's what this gentlemen was talking about in the second from last paragraph on page 2, as opposed to section 71.
Mrs Caplan: Good.
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PSYCHOGERIATRIC COMMUNITY CLINIC
The Chair: Next listed is the Psychogeriatric Community Clinic, Victoria Hospital, Dr David Harris, psychiatrist, and Mr Patrick Fleming. Welcome, Dr Harris and Mr Fleming. We have 20 minutes which includes any questions, so please proceed.
Dr David Harris: I'd like to thank you for the opportunity of being able to speak to you today. My name is Dr David J. Harris and I'm the director of the Psychogeriatric Community Clinic here in London, Ontario. Our topic is geriatric psychiatry. I'm going to share the presentation with my colleague, Patrick Fleming, who is a social worker.
We welcome some aspects of Bill 19 but we still have serious concerns regarding the bill and its impact on seniors in the hospital and in the community.
I'm going to present you with a brief overview of clinical geriatric psychiatry. I will then describe certain clinical concerns that we have relating to the bill, and then Patrick Fleming will discuss some aspects of community assessment.
Geriatric psychiatry is a branch of psychiatry dedicated to the care of seniors with mental illness and their caregivers. Geriatrics is a very functional discipline, heavily concerned with quality of life. The diagnoses that we see include both major and minor depression, delirium, which is acute confusion, dementia, paranoid or delusional disorders, family dysfunction and so on.
There are three groups of elderly people that we see with mental disorder. Firstly, the seriously mentally ill who have grown old, and I believe you've seen some of these when younger in the TV hearings that I watched last week. Secondly, and this is a very different group from the group that you've probably heard about mainly, are elderly people who have become mentally ill for the first time in old age. About half of all depression presents for the first time in old age, and obviously, most dementias present in old age. The third group that we also need to be aware of are those people with mild to moderate mental illnesses whose illnesses may nevertheless seriously impair the ability of others to care for them. For example, minor depression may seriously impair the ability of the patient to cooperate in rehab or even to cooperate with a home care program.
If you look at Roth's figures, about 19% of the elderly suffer from significant mental disorder and another 21% minor degrees of disorder.
There are also some social realities that we need to recognize when we look at this population. Most women in old age are widows, most males are still married, a quarter have no surviving children, so putting the responsibility on the family may not always be realistic because there may be no family. Indeed, many of the children may themselves be seniors. Last week I saw a man of 75 who reminded me that I'd seen his mother-in-law the previous week. Indeed, I had. She was 95.
I work in the community clinic here in London, Ontario. We see about 500 new cases a year and have an active caseload of another 500 cases at any one time. The clinical staff consists of one psychiatrist -- myself -- two social workers and one and a half nurses. Indeed, we carry the heaviest caseload of any program of its type in the province of Ontario and currently run a two-month waiting list.
We see about a third of patients in the office, but two thirds are seen outside the office: a third in their own homes and a third in nursing homes or homes for the aged. We also do about 10% of our work doing ward liaison work where we visit medical and surgical wards doing liaison with our colleagues there.
We have no inpatient beds of our own and are therefore dependent on our general colleagues, such as Dr Velamoor, who you'll hear from shortly, next time, in the general hospital, or for selected cases going to the provincial psychiatric hospital. Incidentally, the absence of psychogeriatric beds in a general hospital is a great deficiency, because so often one is dealing with both medical and psychiatric pathology in old age.
Some general principles I think that you need to recognize in legislation: Legislation should reflect societal values and may influence them. Legislation may lag behind scientific knowledge, and I think this is one of the purposes of these meetings here today. Medicine should care always and cure sometimes. Legislation should not impair that care/cure model.
Most mental health legislation, particularly in the Canadian provinces, was originally very heavily hospital-based and only now is legislation beginning to look at community issues. There's certainly a need to enhance geriatric aspects of legislation.
General adult psychiatry interfaces with society and to some extent medicine, but geriatric psychiatry interfaces very heavily both with medicine and society. Thus the medical model cannot be ignored and multiple pathology is the rule. Even in our own clinic, which is an outpatient, outreach program, 92% of the patients seen by us had major medical problems requiring consideration in the psychiatric management.
Why is geriatric psychiatry important, and why should legislation reflect clinical reality? Firstly, psychiatric illness is common among the elderly with acute medical conditions. Undiagnosed depression may lead to suicide, either active or passive. One third of all patients over 65 admitted to a general medical ward in a general hospital will be confused during part of their stay, and that is double the adult rate. So the psychiatric management of delirium is a very real issue that has to be dealt with on a daily basis in any general hospital.
Eighty per cent of the nursing home residents in Ontario have a psychiatric diagnosis, half of which is dementia. Shulman has described the Canadian nursing homes as "the new mental hospitals for the aged." Yet half of all nursing homes in southern Ontario have no visiting psychiatrist. There is a real deficiency of clinical services to this section of the population.
A quarter -- 27% -- of provincial psychiatric hospital beds are occupied by the elderly, and in Middlesex county, which is where we are now, where 14% of the population is over 65, 35% of all hospital discharges are elderly.
You're devising legislation that presumably will take us into the next century. Let's look at some realities to show how important a topic this is. We're dealing with an aging population. Putting it in context, if we look at the 15-year frame from 1986 to 2001, the general population rises 17%, females over 85 -- these are the people who are going into nursing homes these days -- rise by 81%, and this issue has not yet been adequately addressed either in health care planning or indeed in legal planning.
What modalities of intervention are we involved in? We may see patients in consult only, and that is usually a team assessment: myself plus other members of my team such as Patrick Fleming. We also take patients on in treatment, which may involve pharmacotherapy, in the community, group therapy and so on. We have to liaise with various other groups, including home care. We have to deal or liaise with our physician colleagues in other areas of medicine regarding medical issues, and frequently we come into legal issues as well, mainly to liaise, for example, with the family lawyer.
What are the main issues as they relate to the legislation? This is in the printed handout that you have.
Firstly, it should be normal clinical practice to tell most patients found not to be competent one's findings. It should, however, be possible to use one's clinical judgement to decide how and in what manner this message is conveyed to the patient. If the psychiatrist is in any doubt as to the extent of the disability, he may choose to actively suggest that the patient may wish to appeal, if he so wishes, and advise him accordingly. This is not appropriate for most patients who are found to be grossly demented or delusional; particularly if they've been previously highly functioning, they may be genuinely distressed by having this finding rammed home to them.
Secondly, and this is very relevant to an omission in this Bill 19, specialist clinical teams such as our own, if properly staffed and trained, should be in a position to assess competence and issue appropriate certification, including outpatient certificates of incompetence. These were not restored in Bill 19 and they had been taken away by the previous legislation.
Under current legislation, who requests and who pays for capacity assessments still has to be clarified. Particularly in the absence of outpatient certificates of incompetence, this is a very serious problem at the present time and frequently interferes with patient care.
This is a comment that was raised by some of my inpatient colleagues: Under the current legislation, delays in getting substitute consents may be a very real problem and delay recovery. In the case of the elderly, delays may be very damaging to health. One of my colleagues described a patient admitted to hospital yesterday who is actively delusional, is aggressive and cannot be treated until the rights adviser comes to see him today. So this man, who could be your grandfather, is going untreated in a hospital in this province.
Incidentally, I did an audit of such cases about 10 years ago in Victoria Hospital and found that as soon as appropriate medication was instituted, these people really regained their freedom very quickly; they didn't need to be restrained within a 24-hour period. I think there was one in 100 whose restraints lasted longer than a 24-hour period.
We do have concerns regarding the use of volunteers in the PGT office. We would also like to clarify the ability of the PGT to participate in "do not resuscitate" orders. At the very least, this should be available as part of the treatment plan, and every attempt, when a patient is competent or of variable competence -- that's a very real clinical reality -- should be made to ascertain the patient's own wishes. One very much wishes to avoid the situation where a patient with terminal cancer is resuscitated, only to die again a few days later.
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The law must accept that at times, albeit in a minority of cases, the next of kin or the decision-makers may not be competent to carry out their role. This creates problems in a program such as my own, particularly in the community where we're, in a sense, in a least-restrictive environment.
Certified social workers should be given status as health care evaluators, as they provide such a vital service within the context of most team assessments in this field. Patrick will talk about that later.
The major efforts of advocacy activity should be directed at high-risk cases, specific cases where errors of judgement or management are raised and particularly where family conflict is evident. Advocacy should also address the issue of systemic advocacy, and the latter should be clinically appropriate and aware. Incidentally, geriatric education, which has expanded in the last few years in the medical schools and the nursing schools, would really be the route to go to yield most benefit.
Obviously an appeal system is necessary, but do bear in mind that that time and those dollars are less available for direct patient care. I'd point out that there's a shortage of psychiatrists in this province, and there's certainly a worldwide shortage of geriatric psychiatrists, therefore one has to be aware of the clinical realities when it comes to using, say, the psychiatrist's time.
Many, if not most, physicians have found the current legislation too complex for clinical practice. They frequently avoid issues as they do not know where they stand. They feel in a legal minefield and, at best, they may just treat anyway.
Just a very quick vignette, and it's not in the handout because this cropped up only this week, just to illustrate the realities in which I work:
For several years, I'd been involved in monitoring an elderly eccentric lady. She would not bathe herself or wash her hair and she lived on grapefruit and yoghurt. She repeatedly refused medical care. She was in hospital a few years ago when we thought she might have a cancer, but this was ruled out and we could not detain her further, and she lapsed back into a state of self-neglect.
A year ago, she collapsed and refused assistance from the ambulance attendants. They were bound by her expressed wishes and so she was not taken to hospital. I continued to monitor this lady at home roughly every two or three months. About a year later, after discussion with the family member, I felt that once again we might have reached a time when maybe we could intervene. This decision was partly arrived at because of the aging of the caregiver, so there's a second player to be considered now in this situation. He's over 80, by the way. We certainly knew that she was not viable at home without his support, so if he died, she would certainly be a problem.
I therefore sought the opinion of a colleague who has inpatient beds, and this request was answered fairly quickly, within two weeks; this was to assess a problem that's been there for years. As it happens, during those two weeks she did collapse twice again and she refused treatment, so the husband did not call an ambulance. My colleague went to see her the other night. There was an ambulance there and she was dead.
My regrets with this case are, firstly, that she may well have had a treatable medical disorder; but more particularly, the quality of her life was significantly impaired in the last several years, and with compulsory treatment -- her life was not in danger at that time -- we could have improved dramatically not only the quality of her life but that of the caregiving family member.
The Vice-Chair: Thank you, Dr Harris. We've got about two minutes. Oh, we're not finished? You're going to continue?
Dr Harris: I thought I had 10 minutes, sir.
The Vice-Chair: Yes, you do, absolutely. I assumed you were finished and we were going to move to questions, but if you want to continue, go ahead.
Mr Patrick Fleming: Community assessment; I'm wanting to focus on that. Most situations that create concern around capacity of an individual, personal or financial, are not observed in an inpatient setting. With shorter inpatient admissions and rapid discharge planning, this lessens the chances for inpatient care teams to witness the discrepancy in behaviour.
Most often, it is in the community where the individual lives that changes with coping skills will begin to create concern. Also, unless the change in functioning is gross in nature, it is vital to assess individuals in their own environment to see the level of functioning in a familiar setting.
Health care practitioners, physicians, nurses, occupational therapist, psychologists and many others, along with social workers, have been doing assessments in the community for years. Emphasizing equal importance with assessments on an inpatient or community basis will reflect the new realities of health care.
The profession of social work is unregulated in the province of Ontario. Under present legislation, professionals regulated under the Regulated Health Professions Act are designated as health care practitioners and can take part in the assessment of the individual. Often, social workers are significantly involved with the psychosocial assessment of an individual, both on an inpatient and community basis. Their clinical findings play a critical part of the assessment; however, they cannot be one of the authors. It is an unbalanced use of an important professional resource.
Capacity assessors. Under the present legislation, professionals and agencies are unable to assess individuals who have had contact with them. In large agencies, for instance hospitals, service areas are often quite independent of each other; therefore, little risk of conflict of interest. The professionals involved, guided by their professional standards of practice, would minimize conflict of interest. With specialized assessments, resources to complete them may be limited. Unnecessary delays may take place with situations that are quite vulnerable.
It would be a good use of resources to enable professional personnel within agencies to assess individuals who have had past or present contact with the agency. If a second opinion is requested, then different professional personnel could be used.
User-friendly information. In a final comment, individuals, family members, professionals and the general public find the issue of capacity assessment quite confusing. It would be very beneficial to have a simply worded flow chart to visually demonstrate the process from start to finish. It could highlight how to start, who becomes involved, who pays, individual rights, outcome from assessment, appeal mechanisms etc. This would allow a better understanding and use of the resources available.
The Vice-Chair: Thank you. We'll move to questions now. Each caucus has about one minute. We'll start with the third party.
Mrs Boyd: Thank you, Dr Harris and Mr Fleming. I always learn more every time I hear you, so thank you for coming. I was following you just fine until you came to your example. I guess that's where we fell off the wagon, because I take it that you do not think that a person's expressed wish should take precedence over a medical opinion as to whether that particular illness ought to have been dealt with whether the patient wanted it to be or not.
Dr Harris: There were two parts to my concerns with that patient. Firstly, her expressed wish was not to be treated. This was probably based on her fear of doctors and hospitals. I'm saying that's something that happened, and you can argue whether that should or shouldn't have happened. The second point was that she had a miserable last 10 years of her life. Her husband, who is the only other member of her family in this country, has had a miserable last 10 years of his life. I think that we could have, with some compulsory powers, enabled her to lead a normal life and possibly live longer. But it wasn't the living longer that was worrying me; it was the quality of life.
Mrs Boyd: We believe that the Advocacy Act would do that. An advocate could have intervened.
The Vice-Chair: Ms Boyd, we have to move on.
Mr Parker: Thank you both very much. Dr Harris, in your paper you've made a few comments and recommendations on the subject of assessors, particularly the qualifications for assessors and the appointment of assessors. Under the present act, that's a matter that's handled by way of regulation, and frankly, that's not going to change; it will be handled by regulation under the proposed bill. Your comments and recommendations will be very helpful to us in establishing the regulations under the proposed bill.
Tell me, were you consulted on the establishment of regulations under the current law?
Dr Harris: I was not personally. I don't know whether OPA was consulted. I heard Brian Hoffman talking to you last week on television, but I was not personally consulted. I've been quite active in OPA and in CPA.
Mr Parker: Thank you very much for your assistance to us. That will assist us in establishing the regulations under the proposed bill.
The Vice-Chair: Thank you, Mr Parker. To the Liberal caucus, Mrs Caplan.
Mrs Caplan: I want to thank you. Over and over again we've heard, from most of the people who've appeared before the committee, your first point: that it should be normal clinical practice for people to be told.
The other thing we've heard, frankly, is that psychiatrists who are used to dealing with the Mental Health Act are comfortable with that and they know how important that communication is. Our concern is that if there is not that obligation somewhere to do that, then people are denied important information.
While there's the black and the white, where it's clear that those who are totally demented and are comatose or whatever are not going to be able to comprehend -- those are the clear ones; nobody has a problem with those -- and where you're clearly competent, there's that whole grey area, where you may be going in and out of competency, where communication is so important because it can lead to, and I've seen it from personal experience, "You're keeping something from me." In fact, if you are keeping something from them and they find out you've kept something from them, it makes their condition worse. Have you had that experience, where finding a way to communicate can actually be therapeutically beneficial?
Dr Harris: Can I address that? It depends on the disorder you're dealing with. If I can give you an example of manic-depressive illness, when I have manic-depressives who are well I will spend a considerable time discussing with them what I did to them when they were sick. I detained them. As I'm the outpatient doctor, I might not have been the treating doctor. They usually say: "That's fine. Please do that next time if it's necessary." Then I feel far more comfortable when I have to do the same thing again a year later.
The Vice-Chair: Thank you, Mrs Caplan. Sorry, we're out of time. Thank you very much, gentlemen, for the presentation.
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Mrs Johns: Mr Chair, I just want to make a point of clarification. I know I've done this before, and if everybody's got it, I'll just go. In section 2 of the Health Care Consent Act, the "health practitioner" definition: As we all know, the social workers aren't with a college or a registered body yet, so they can't be outlined in there. They would have to be part of clause 2(1)(t).
"Evaluator," in the same light, can't be outlined under "health practitioner," where we're drawing our definition from, and it would have to be prescribed by the regulations as evaluators. it's not to say that in this act we're not taking social workers as evaluators; it's just because they have not been able to form their own college or register yet. We deem that social workers will be a very important part of the evaluator process.
LONDON AND DISTRICT ACADEMY OF MEDICINE
The Vice-Chair: The next presentation will be the London and District Academy of Medicine, Dr R. Velamoor and Joy Wendling, please.
You have 20 minutes for your presentation. You may want to leave some time for questions at the end. You can begin any time.
Dr Raj Velamoor: We appreciate this opportunity to be heard, because we believe that participation in the planning process is extremely important so that we can work together. Also speaking today is Ms Joy Wendling, who is a paralegal adviser at St Thomas Psychiatric Hospital. Dr Chandarana is unable to be present today. He has requested that I forward to the committee his summary of a recent survey of physicians to gauge the reaction to the Consent to Treatment Act.
We are thankful to the London and District Academy of Medicine for arranging this time slot so that the comments and concerns of the department of psychiatry at the University of Western Ontario could be presented to this committee.
Our presentations will focus on the general adult psychiatric services, which means the age group of 16 to 65. At the very outset, I would like to state that we support the changes the provincial government is introducing to the Consent to Treatment Act, Advocacy Act and Substitute Decisions Act. The government has corrected some of the imbalances the acts created and also removes the several layers of costly bureaucracy.
We believe that Bill 19 deals with the issue of informed consent in a practical and realistic way, while maintaining the rights of patients to make informed choices about their own care. The new act also strengthens the role of families in making treatment decisions on behalf of incapable relatives and improves the relationship between care providers and their patients.
The doctor-patient relationship, in my view, is critically important in the overall management of psychiatric patients. Treatment alliance between the doctor and the patient is founded on trust. The advocacy system has created an adversarial climate which covertly promotes lack of trust between the doctor and the patient. What is often forgotten is the fact that every individual in psychiatric distress has also the right to receive the best treatment so that his health interests could be safeguarded.
In the new act, the list of substitute decision-makers has been streamlined. The definition of "emergency" has been clarified to include a person who is "apparently experiencing severe suffering." Proposed changes to the Substitute Decisions Act should make it easier for families to assume decision-making authority for their loved ones. We endorse the provision in the new act for the possibility of a substitute decision-maker to consent, withhold or withdraw treatment in the patient's best interests.
Here are some of my concerns which I hope can be addressed so that we will have a happy compromise between what we had and what we might get:
(1) We are concerned that we may be moving too quickly from a mode which was bureaucratic, adversarial and expensive to a model which places too much responsibility on family members without adequate supports available to them.
(2) The new model is a medical model which does not adequately address the specific concerns of psychiatric patients. For example, several of our patients are cared for in the community by rehabilitation programs and other outpatient services. Some of these patients are non-compliant and are unable to be helped until they actually decompensate and become certifiable.
I couldn't agree more with Dr Harris's earlier comment that sometimes it's very difficult to bring them into hospital for the simple reason that we just don't have the beds. There are far too many people chasing too few beds.
(3) Although the new act has amended the definition of "emergency" to include a person who is "apparently experiencing severe suffering" which will put the patient at risk of sustaining serious bodily harm, there is no mention in the definition of "risk to others" due to aggressive behaviour on the part of an individual also requiring urgent intervention. This might be because the definition of an emergency is a medical one, and does not perhaps capture the psychiatric perspective adequately.
(4) The Health Care Consent Act allows those who have been found incapable to apply to a tribunal. It is not clear who will assist these individuals to make this appeal. One wonders whether they'll have the ability to do it themselves. Who will, therefore, assist those individuals and how will they be paid?
(5) The Health Care Consent Act, under 19(1)2: "If the person does not know of a wish applicable to the circumstances that the incapable person expressed while capable and after attaining 16 years of age, or if it is impossible to comply with the wish" -- that's what I'm going to comment on -- "the person shall act in the incapable person's best interest." While we recognize the value of this provision, the family will need considerable assistance and support in this respect because I think that is a great deal of emotional burden on the family.
(6) It is unclear in the new act whether a substitute decision-maker can consent to personal assistant services in a hospital. For example, patients who are in a psychiatric hospital receive assistance with routine activities of daily living, nutrition, shelter, clothing etc. This is in addition to treatment. It is unclear whether a substitute decision-maker can consent to such personal assistance services in a hospital.
In conclusion, I would like to commend the government for making much needed changes to the consent, advocacy and substitute decisions acts. Hopefully, we will design a new model that facilitates treatment without delay while recognizing the right of the individual to question decisions regarding their management. I would like to emphasize that every support should be made available to the families of psychiatric patients in helping them make the best decisions in the best interests of their loved ones.
I would at this point like to hand you over to Mrs Joy Wendling.
Ms Joy Wendling: Over the past decade a great deal of emphasis appears to have been placed on one's right to refuse treatment. Many health care practitioners have been concerned about a person's right to be treated, even when one's illness leads to a belief that treatment is not necessary. Bill 19 goes a long way towards finally attempting at least to balance these rights.
The main problems with the existing legislation today are that it is complicated to follow and cumbersome to implement. Many of the changes included in Bill 19 will solve these problems and we applaud and endorse them. These are listed in the part of our written submission that is called "Discussion of Legislation." I'm not going to read the whole thing out to you. I would just like to highlight a few of our concerns. I'll refer to the numbers on that discussion of legislation as I go through my discussion.
Items 1 and 2 of the written submission deal with welcome changes regarding treatment and treatment plans. When one is dealing with a capable patient, consent is relatively easy. The health practitioner informs the patient about his condition and proposes treatment. The patient consents to the treatment or refuses it. When minor adjustments in the treatment are required, this is quickly explained to the patient and consent obtained. The patient may also consent to the withholding or withdrawal of treatment, particularly do not resuscitate, recognizing that sometimes treatment simply prolongs the pain and suffering while postponing the inevitable. Often minor adjustments are required before optimal treatment is found. We can easily obtain this with a capable person.
When the patient is not capable, everything becomes much more difficult. First, a substitute decision-maker at present can only consent to treatment, not to the withholding of treatment. Second, local general hospitals provide primary psychiatric care; provincial psychiatric hospitals provide secondary and tertiary care. This means that family, the usual substitute decision-makers, are at a distance from the hospital. When the patient is transferred to the psychiatric hospital, it is usually by ambulance and frequently family members are not present. It is in the patient's best interest to continue treatment, but at present we cannot do that until we obtain a new consent. This can take some time. It is also much more difficult to contact the substitute for a minor adjustment in the treatment. So we strongly endorse those proposed changes.
Item 3 of the written document, treatment seldom consists of one modality proposed by one health care practitioner. Many practitioners contribute to the treatment plan. Current practice is to obtain one consent to the entire plan of treatment, but we do welcome the clarification of this in the legislation.
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Item 4 addresses what I consider to be a very important issue. The Consent to Treatment Act is written, I believe, from a perspective of proposing a new treatment to a substitute decision-maker. This is appropriate in many cases, but in psychiatry capacity to consent is not always clear-cut. Patients can and do become incapable after treatment is initiated.
When that happens, we must obtain a substitute consent to continue the treatment. Stopping treatment until substitute consent can be obtained is at best detrimental, and at worst dangerous. While an argument could be made that subsection 16(3) does not apply to this situation because the terminology of the act is "begin," we believe that it should be clearer on this and actually specify that subsection 16(3) does not apply to treatment already begun with the patient's capable consent. Treatment should stop only if the patient is found by the board to be capable.
Item 5: One problem with current legislation is that it is not always clear who should provide consent when spouses are separated or when parents are separated or divorced. We have had cases of separated spouses insisting on being involved in making decisions. So section 18 will clarify this.
Section 71 would permit a hearing of the board with only one member. We believe that decisions made by the board regarding capacity to consent to treatment are extremely important and should never be made by only one person. With all due respect to the legal profession, unless a board member is one of the very small number of lawyers who are also health care practitioners, we do not believe they have the expertise to make a decision in isolation regarding capability to consent to treatment.
We strongly recommend that any board which is reviewing a health practitioner's finding of incapacity to consent to treatment must have at least one member with clinical experience and expertise in evaluating mental capacity.
Item 11: While I believe the intent of the legislation is to include personal assistance services provided in a hospital, a careful reading of the applicable sections of the Health Care Consent Act, which I have itemized in the written document, does not make it clear that this is the case. The definition of "treatment" specifically excludes a personal assistance device. Part IV of the act which deals with personal assistance plans applies to care facilities, not to hospitals. If the intent of the act is that personal assistance services can be provided in a hospital, and I certainly hope that is the intent, then this should be more clearly defined in the act.
Item 12: While the system of providing rights advice in the Consent to Treatment Act is cumbersome, and we welcome the changes about this, we believe it is still important that a person be informed he has the right to apply to the board for a review of a finding of incapacity. In the best of all possible worlds, the health practitioner who makes the finding will inform the subject of that finding and of her right to apply to the board. I believe a majority of health care practitioners would do this. This is, though, an imperfect world and I believe the act should direct that this be done.
In our part II, "Substitute Decisions Act," item 1: We do not agree that a child of the grantor of a power of attorney should be allowed to witness it. Unfortunately, in our business we sometimes see the worst of people. There is a real risk that vulnerable, elderly patients will be coerced into signing a power of attorney by someone who may be able to benefit financially from it. It is minimal protection to prohibit children from witnessing the document. It is also minimal protection to require the witnesses to believe that the person granting the power of attorney is capable to do so. There are a great many vulnerable people in our society and we have a duty to protect them.
Item 2: Prior to the Substitute Decisions Act, I was frequently asked by family physicians and other health care providers what action they could take when they believed a patient was not financially capable. The answer was, unfortunately, none.
When I first learned that the Substitute Decisions Act would allow anyone to request an assessment, I believed we now had a solution for these situations. Unfortunately, it was decided that the person who requests the assessment must pay for it, and that assessors would set their own fees. Hospitals and care facilities are not prepared or able to pay for assessments. It is not reasonable to expect a health care practitioner to pay for an assessment out of her own pocket. I realize that this allocation of cost is not inherent in the act itself, but we strongly recommend that something be done to exempt health care practitioners from the fee for assessments.
Item 3. We do not agree that subsection 17(5) should be revoked. Someone should not be permitted to appear out of the blue, so to speak, and be able to obtain control of a person's property or person. Forgive me if I sound cynical, but I've worked in health care for over 30 years, most of it in chronic care and psychiatric care. This does happen much more frequently than any of us like to realize or to admit.
It is not mentioned in our written submission, but I should like to state that we also endorse the removal of registration and validation of powers of attorney for personal care. These provisions were unnecessarily complicated, and I have to admit I often felt like Alice in Wonderland when I was trying to explain it to staff and to families. Powers of attorney for personal care will be valuable only if they can be used easily when appropriate.
Part III, the Mental Health Act. We believe very much in the confidentiality of personal information, but it is extremely important in psychiatry that we have as much information about a patient as possible. Information from other health facilities can be obtained without the patient's consent through a request from the officer in charge. However, other agencies, such as the children's aid society and correctional services, require consent.
We deal with people who cannot or will not give consent, and often will not give us any information themselves. Often we cannot find a substitute to consent either. We recommend that the provision allowing the chief executive officer to obtain information without the patient's consent be extended to other agencies. We must also have the patient's consent to release information to family physicians and community agencies who will be following up the patient. It is unrealistic to expect these people to provide care to the patient without adequate information, yet if for some reason we have failed to obtain a consent before the patient leaves hospital, we cannot provide it. We recommend that the Mental Health Act allow us to release information to anyone providing follow-up care.
Thank you for the opportunity to appear before you today to discuss issues that are of great importance to the health care field and especially to the field of psychiatry. We believe, with the exception of the few areas we've mentioned, that Bill 10 provides excellent revisions to the legislation which governs our daily lives.
The Vice-Chair: Thank your for your presentation. Each caucus will only have one minute for questions; we'll start with the government side.
Mr Parker: Thank you very much for your very helpful comments. We will pay close attention to everything you've submitted. I'd like to respond just to one at the moment.
On page 7 you comment on the obligation for payment for the assessment where it's the doctor who's ordered the assessment, and you're not the first one to raise that concern in practice in one way or another. One of the expectations we have is that we will expand the number of people qualified to provide assessments and will include, in the group of those qualified, people in salaried positions in clinics and hospitals and so on so there would be greater access to assessors able to carry out the required activities without charging for it. You give an example of where it might be appropriate to use a person of that sort. I hope my comment in response to your concern gives you some comfort, but I want you to know that we have heard your concern and we'll take it into consideration as we move forward.
The Vice-Chair: To the Liberal caucus.
Mrs Caplan: I find the comments from Mr Parker interesting. I'd also like to know what their plans are to ensure that there's appropriate training and certification for assessors, because I think quality assurance is important. I hope you would agree with that.
Mrs Wendling: Yes, I do.
Mrs Caplan: I would like to congratulate you on the very clear recommendation regarding the individual's right to know when they've been found incapable. I agree that the statute should be very clear about that, particularly given the fact that it has removed any liability from either the substitute or the practitioner who makes those kinds of findings and proceeds to treat. I think it's just a basic right.
I want to ask one small question on the issue of 17(5), which has been deleted. I wondered why it was taken out. It seemed to me that while there may be an exception, usually if someone's going to apply to be a substitute decision-maker they would have a relationship. If you get a chance to comment on that from your experience, I would appreciate it.
The Vice-Chair: Mrs Caplan, I'm sorry, you're out of time. You just had one minute and you chewed it up pretty quickly. We'll move to the third party.
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Mrs Boyd: It's indeed a pleasure to have health care providers coming and saying many of the same things consumers of health care have been saying. I'm delighted with most of what you've said in terms of the concerns you have. I would agree with you that the current process of registration and validation is cumbersome. We were assured it had to be done that way in order to be legal, so we're delighted that different advice has been given now.
I wanted you to comment on whether the addition to section 66 of "the following factors: Whether the guardian's decision is likely to... improve quality of the person's life" etc could interfere with the withdrawal or refusal of treatment.
Mrs Wendling: I don't believe so, given that the definition now includes withdrawing or withholding.
The Vice-Chair: On behalf of the committee, I want to thank both of you for your presentation.
Mr Parker: Mr Chairman, I just want to make the observation that the previous government obviously didn't consult enough when it passed its legislation.
Mrs Caplan: At least he's laughing when he says that. I do have a point I'd like to make.
Mrs Boyd: I'd like to make a point of personal privilege, if I may. The current government has consistently said it doesn't need to consult on this bill because we consulted too much.
The Vice-Chair: Ms Boyd, Ms Caplan, I'm sorry, this isn't time for debate. We're going to move on. The next speaker is Dr Sandra Fisnan from the Children's Hospital of Western Ontario. Is she in?
Mrs Caplan: While the next presenter is coming forward --
The Vice-Chair: Ms Boyd, please.
Mrs Boyd: I'm not saying a word.
The Vice-Chair: Ms Caplan. You see, now I'm getting all mixed up between the two of you.
Mrs Caplan: While they're coming forward I'd just like to clarify something.
The Vice-Chair: Hang on one second. Dr Sandra Fisnan wasn't scheduled to appear until 4 o'clock and she isn't here yet that I'm aware of. Can have unanimous consent to recess till 4 o'clock when she is scheduled to appear? Is that a problem?
Mr Clement: What happened to the 2 o'clock? They're gone?
The Vice-Chair: They're gone. Dr Fisnan is the last one of the day and isn't here yet and isn't scheduled to appear till 4.
Mrs Caplan: Mr Chairman, I suggest this might be a good opportunity for us to have some questions answered by the ministry people who are here.
Mrs Johns: Can I have a point of clarification about this presentation before we go on to that, and then you can ask some questions? Is that okay with you?
Mrs Caplan: Sure I wanted to clarify something as well.
Mrs Johns: Okay. In section 3 in this paper that Dr Velamoor presented, he talks about risks to others. I just wanted to clarify that we talk about that in the HCCA portion of the bill under section 6. We're talking about the common law taking precedence with respect to someone who could cause serious bodily harm to someone else. I wanted to show you that it was considered and it is in the common law, so we are considering that person in that kind of situation with this act.
Mrs Caplan: I think there's also another application. If a physician deems the person to be a risk to themselves or to others, they can detain them under a form 1 under the Mental Health Act, so there is the double protection there. That's not changed by this legislation. I also, as a matter of fact, wanted to point out that there are two places that should respond to that concern that the previous presenter raised.
Mrs Boyd: Just in reply, I'm not sure that didn't answer, actually, the other example Dr Harris raised about the current problem he has in his own ward at the moment about a person who's untreatable. He did say that person was aggressive, and I was quite curious about why that hadn't been deemed to be an emergency. It may be because, under the current act, it may not be. That then is a good change, if we've blocked that hole, because we're all concerned about that kind of thing happening and I don't think it was the intent. We've just had a really good example of how there are some real changes that are acting together to solve some of the concerns people have raised.
The Vice-Chair: Do we want to ask ministry staff some questions? Okay. Could we have you sit at the witness table, and we'll start with Ms Boyd.
Mrs Boyd: I had a question on the last presentation, and it was something I hadn't really noticed before. It is in the Health Care Consent Act, paragraph 19(1)2. It is the underlined portion that Dr Velamoor gave: "if it is impossible to comply with the wish."
Could I have an indication from the ministry staff as to, first of all, what that would mean. I just need an indication of the circumstances under which that would happen, because Dr Velamoor goes on to say that would be a really impossible decision for a family to make. I don't think that was your intention, that that constitute impossibility. Impossibility might be something like somebody's up at the top of a tower and you can't get to them or something.
Mrs Johns: The treatment isn't available.
Ms Auksi: Yes. Partly, that's intended to address something which doesn't technically get into the scheme of the Consent to Treatment Act at all. If someone wants a treatment but it's not considered, let's say, clinically appropriate for them, it's to really make it clear that just because someone has wishes about treatment doesn't necessarily mean that treatment is going to be offered to them. That needs to be considered in the consent process, sometimes, by a substitute decision-maker.
Mrs Caplan: I have several questions. The first one relates to the last presentation about the removal of the section on the closeness of family. I just wondered what the rationale was for the removal of that section. If it was a political decision, fine, but I just wondered if that had been recommended by the ministry.
Ms Auksi: There are certain problems with inserting any kind of really inviolable rules. The kinds of situations that can arise are, for example, let's say siblings grew up together and actually are quite close but they live in different cities, but an important health care decision comes up and that sibling is the closest relative. In some cases that might not be an appropriate person, but in another case it might be a perfectly appropriate person. With parents of adult children that may happen too. They may end up living in separate places, and not everyone maintains contact by phone -- they might not be able to afford to -- and writing letters is not really that common, but they may still have a very close bond. If the person enters the picture and wants to be the decision-maker and someone has concerns that they may not be appropriate, there are ways under the act for alternatives to be explored. It's not as though they have a right to make that decision without anybody having any way of looking for alternatives.
If you set the rule that you had to have had close contact with the person over a certain amount of time, maybe the alternative would be that you'd have to go to the PGT. Is it necessarily better for it to be a public official as opposed to someone maybe you were very close to growing up but just very recently you might not have had contact with?
Mrs Caplan: Perhaps there's another alternative in those rare situations. Rather than a formal process of the PGT, there might be some other referral to the Consent and Capacity Board.
Ms Auksi: That can always be done. The thing is, let's say there was a friend who was willing to play this role -- first of all, if it were a partner, they wouldn't even have to take any separate steps, but if it's a friend who doesn't fall into the "partner" definition, the incapable person could apply or the friend could apply to the Consent and Capacity Board to be appointed representative to make the decision. Some people may be hesitant to do that, but it's a heck of a lot simpler to do than to make a guardianship application, for example. It sounds as though that step has been taken by a number of people and that people are being encouraged to do it where it's appropriate.
Mrs Caplan: I'm just concerned that the act is too loose.
Ms Auksi: With regard to family.
Mrs Caplan: The assumption that a long-lost nephew who appears on the scene would be considered ahead of a friend I think is an issue.
Mrs Johns: But you could always take it to the board and have them evaluate it. If you're unhappy with who gets the decision under section 18, you can go to the board.
Mrs Caplan: Can the practitioner take it to the board? What would be the procedure for getting to the board in that kind of situation? Who would make the application?
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Ms Auksi: The application to the board is by either the person who is proposing to be the representative --
Mrs Caplan: So the friend could do that?
Ms Auksi: The friend could do that. Or the incapable person, if the incapable person expresses a preference for someone to be the decision-maker, someone may need to give them a hand, but they could make the application directly.
Mrs Caplan: Good. Unless you're going in rotation --
The Vice-Chair: No one else is on the list so if anybody else has a question, raise your hand.
Mrs Boyd: Just in pursuit of this, because I think I'm getting a lot clearer in terms of what the intention was. If there are no friends or relatives and this long-lost person appears, and there's no requirement for any kind of a declaration at all, if the person is incapable and unable to do that, can anyone else ask the capacity review board to look at this?
Ms Auksi: How do you mean?
Mrs Boyd: A care provider? Could a care provider ask?
Ms Auksi: You mean to become the representative, no.
Mrs Boyd: Let me give you the example, and it's one I know of personally, where an older person has a care provider who has been in the home for a number of years. In that number of years, there has never been any familial contact. This person slips into a comatose state, becomes incapable. And all of a sudden, out of the blue, in blows an in-law, under this -- yours; in ours at least it would've been a relative, a real relative, but it's an in-law who suddenly says, "I will take charge of this."
There's considerable property involved. Who tells the public guardian and trustee? Is the care provider able, in those circumstances, to say to the public guardian and trustee: "Look, this person has arrived to take this woman's stuff. She really wanted to leave it to the humane society, but this person is going to come in and deplete this estate under a power of attorney -- under a guardianship kind of thing, when she doesn't even know him, and he hasn't had anything to do with this." What do we do?
Mrs Johns: You've just moved from health to --
The Vice-Chair: Ms Johns, excuse me, I don't want the interjections. If you want to make a comment, raise your hand, and I'll put you on the list.
Mrs Boyd: But I have, and that's our problem. We keep slipping from one to another.
Mr Garry J. Guzzo (Ottawa-Rideau): We're asking the questions to the staff.
The Vice-Chair: That's fine, but what I don't want is for parties to interject back and forth. Simply raise your hand, and I'll put you on the list and you can make your comments then.
Mrs Boyd: May I just then complicate it by saying, and also under the health care part of the act, suggest the withholding of nutrition and hydration, which we've also heard about.
Ms Spinks: If I could address that, I think you're asking two questions. One is a general one, when someone may be a guardian or may have some decision-making role or claim some role, and there are nefarious motives or there's potential harm, is there anything that can be done, and, yes, under the Substitute Decisions Act, the PGT is authorized to investigate a report of either a threat to financial or wellbeing --
Mrs Boyd: From anyone.
Ms Spinks: -- or personal wellbeing, from anyone. One of the problems is getting that complaint to the PGT, which is why the regulation authorizing disclosure to our office needs to be built in, because people who want to report that issue have expressed difficulty. But we could deal with that situation.
The second question I think is more specific. What do you do when someone claims, under the Health Care Consent Act, in the hierarchy, a right because "I'm an in-law" that maybe hasn't seen a person for five years, and they're saying, "I want to withhold treatment." And the practitioner's saying, "I think that this is because of a financial interest and this is actually going to do harm to the person," could we become involved? The answer would be yes. It will fall under the potential-harm-to-the-person category, and a guardian always takes precedence over somebody in the health care consent hierarchy.
Ms Auksi: Could I add to that too, the substitute decision-maker making a decision is not the only person who would be aware of that incapable person's condition, because if the substitute refused treatment that was clearly in the best interests of the person, then the substitute decision-maker can, in an emergency, treat notwithstanding, unless there were prior wishes to refuse that treatment by the person. On a best-interests basis, if they feel the substitute decision-maker was not complying with best interests, they can treat regardless, and if it's not an emergency, the health practitioner can launch a compliance review with the Consent and Capacity Board to question that decision, and the board then can give direction to that substitute as to how they should decide, and if they refuse to decide in that way, then they lose the right to make the decision. If they don't act properly, there are ways to address that.
Mrs Boyd: In one of our presentations, one of the presenters suggested, is there some way that we can have some kind of a flow chart that really shows how all of these things work together, for the family physician, for the psychiatrist and the emergency department, for the home care provider, for relatives? Is there some way we can flow this so we can see how these things interact, so that it's easily seen?
I think it would alleviate some of the real fear, real panic that we've heard from people, and I think we need to respond to. If people knew how this was -- and knew that was going to be generally available. We've heard a lot of talk about the need for education, but clearly, when we start to talk about it, we skip from one act to another, and get confused, and we've got the thing in front of us and we've been really working hard at this. I think when people come before us and say this is still very complex, even though it's simplified, that one of the jobs we need to be trying to do as we go on is find some way to get that reassurance by showing how this all works together.
It really needs somebody who thinks in graphic terms, which I don't but I know some people do, and it might help us to explain what's going on.
The Vice-Chair: Thank you, Mrs Boyd. I want to move on now. We've got our next presenter here, and I want to thank you for your information.
CHILDREN'S HOSPITAL OF WESTERN ONTARIO
The Vice-Chair: The next presenter will be Dr Sandra Fisman from the Children's Hospital of Western Ontario. You've got 20 minutes, and you may want to leave some time for questions at the end, and you can begin any time.
Dr Sandra Fisman: I'm very happy to be here because it isn't often that child and adolescent psychiatry gets a chance to input into some important changes, and these are important changes. So thank you.
I wanted to let you know that the current legislation has created many dilemmas for us. It's been somewhat of a nightmare, particularly in caring for 14- and 15-year-olds, and what we've found is that the needs and the rights of kids, of adolescents, have sort of been pitted against their parents, and it's been very difficult at times.
There's also been a spillover. I heard something about different legislative issues, and how they spill over from the consent and other acts, and one of the things that's happened to us is that there's been confusion at the moment as to whether kids who are able to consent can then sign their own form 14s and release their own information. So it's been very difficult.
There have been difficulties where kids have consented to treatment and haven't wanted their parents to know about the treatment, and we've wondered about our legal liability in those cases. And there's been the reverse, where parents have wanted kids in treatment, kids who are competent to consent have refused, and that's created a nightmare as well.
While I think it's an oversimplification to have found a magic age where you think kids are capable to consent to treatment, nevertheless, I think we would support the fact that you've done that, and would see, given that there are going to be times where we'll feel that a kid of 14 is really quite competent to consent, weighing that versus the nightmares that we've experienced, that it'll be better to have a uniform age of consent.
We would ask, as a group, that you consider something beyond that, that for adolescents, the different legislation that deal with when they're allowed to do different things, just creates a nightmare in confusion. For example, you can smoke and drink at different ages. You become an adult criminal at a particular age. You can vote at a particular age. You can drive at a particular age, and none of the ages are congruent, or most of them aren't. What I think would be a solution, and the people I work with agree with me, is that if we had a uniform age of majority, adolescents would be a lot less confused, and one of the logical ages may be to pick 18 as the age of majority. So I would suggest that to you as something to think about. I know it's complex and it goes beyond the changes that you're suggesting.
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The second area that I would support is the changes in the definition of treatment. I think it's been difficult for us to define some of the things that we do as risk treatment, so family therapy, milieu therapy, individual therapy, are low-risk, no-risk kinds of treatments, and it'll be very nice not to have to worry, if you like, about consents for each of those treatments, that we can have a therapeutic alliance and work with people, but not get into the issues that we need to get into with the designated treatment.
We would support that change as well, and we would also support the change where one can make minor modifications without a new consent, and that seems to make a lot of sense to us as well.
The other thing I would like to support is that you have clarified for us the ranking of a custodial versus an access parent, and that's very helpful. It's been most unhelpful to have to have the consent of two separated parents, where one parent is a custodial parent and the other parent is an access parent, and to have to go to the public guardian to decide on an issue where an access parent disagrees with a custodial parent, where the custodial parent was in fact given the right by the courts to have custody of their child. So clarifying that has been very helpful.
The other area that I think is going to be helpful for us that again we would support -- and you must be wondering why I'm supporting everything that you're suggesting, but they're very helpful changes -- is the whole issue of the informal patient, between the age of 12 and 15. It's going to be very helpful that a kid between the age of 12 and 15 not be able to apply to the Consent and Capacity Board to review the decision that's been made by their parents for them to be in treatment.
The only concern I have is that you haven't clarified for us whether the Mental Health Act will supersede that or whether this will supersede the Mental Health Act. So under section 13 of the Mental Health Act, in fact children at that age, as informal patients, have the right to a review board, as it's stated in the Mental Health Act. And unless you clarify that for us in this act, it's going to be very confusing.
The other thing I haven't mentioned in the handout that I've given you is that there is a statement that the Child and Family Services Act will supersede this act and all acts, and that makes a lot of sense, because child protection issues need to be dealt with first, and then the treatment issues become much more simple when there is an appropriate legal guardian.
In summary, we really support the changes, find them very helpful and would only suggest that you look at a uniform age of majority that would cross all legislative issues for children and adolescents.
The Vice-Chair: We've got about 15 minutes left for questions, five minutes per caucus, and we'll start with the Liberal caucus.
Mrs Caplan: I'll keep it brief because my colleague has a few other questions also. It's my understanding that the Child and Family Services Act, children's mental health and all of that under Comsoc is dealt with and then the Mental Health Act here, so you have a continuum. Frankly, from my experience as a former Minister of Health, I felt that worked reasonably well.
The intent of the Health Care Consent Act, which I also support, leaves silent and allows the health practitioner to determine whether or not the child is at an age where they can appreciate what a treatment is, and the difference here is that when you're dealing with mental illness or mental disability or even physical disability that may impact on capacity from time to time, the difference here is that access to the health system for other types of services are a singular event, and may result in treatment for that purpose.
We heard from Sick Children's Hospital, for example, that children who are suffering from a sexually transmitted disease will not talk to their parents, will not even go their family doctor, but will want the anonymity of the big hospital and present there. We know that whether it's in young men or young women, untreated sexually transmitted disease can lead to terrible damage if left untreated. I'm not sure your concerns are not addressed by existing legislation. In fact, I'm comfortable that when it comes to age, there's no one consistent number that we should apply to all legislation. I'm going to leave Mr Ramsay -- I don't have a question. I just wanted to give you my perspective on that. If you disagree, we'll just disagree on it.
Mr Ramsay: Do you have a response to that first?
Dr Fisman: Yes, and I appreciate what you're saying. You have to look at both sides of the story. One of the good examples that I could give you would be of a young adolescent with an eating disorder who clearly needs treatment, who will generally not see the need for treatment but who has parents who are adamant that their kid needs treatment, and that kid may be competent to make a decision about treatment. He may not be at a level of physical danger where you could say that he needed emergency treatment.
Mrs Caplan: Under this act, you should be able to treat him if you deem the child competent enough to make the decision.
The Vice-Chair: Mrs Caplan, Mr Ramsay has the floor. His mike is the one that's on.
Mr Ramsay: Thank you very much, Mr Chair. That's great.
Dr Fisman: I wondered if I could just finish the problem. Under the existing legislation it becomes very difficult, so you would say to that 14-year-old, "You need to be in treatment," and the 14-year-old would say: "I don't need to be in treatment. My parents think I need treatment but I don't." You would then have to judge them incompetent, get them a legal rights adviser and their parents would then be pitted against the legal rights adviser, who may say, "Well, you have every right to decide whether you're going to be treated or not."
Mrs Caplan: Or go to the board.
Dr Fisman: What happens is, the kid goes untreated.
Mrs Caplan: Or goes to the board, and the board decides the kid's incapable and then you get to treat.
Dr Fisman: It's difficult.
The Vice-Chair: We're going to move on now to the NDP caucus. Five minutes has expired.
Mr Clement: I just want to say for the record I agree with Elinor.
Mrs Caplan: It is only because it's Valentine's Day.
Mrs Boyd: That was worth getting on the record, Mr Chair.
Mr Ramsay: You're wearing them down, Elinor.
Mrs Boyd: Dr Fisman, I want you first of all to know that I really admire the work that you've done. I know that you are greatly thought of in our community, so I would not want you to think that anything I'm saying is a criticism of your personal work, because it certainly isn't.
Dr Fisman: Thank you.
Mrs Boyd: This act does not give 16 as the age of consent. I may be reading your paper wrong, but you seem to be assuming that it does. In fact, you should know that all three parties here are in agreement with the act as it stands, that there be a presumption of capability regardless of age. You need to know that we hear you, we don't happen to agree with you, but we really have looked at all of these ramifications. It's not that we haven't looked at them. We've all struggled with them now for a lot of years and it's a very difficult issue.
Dr Fisman: It's difficult, then, to interpret the act because it repeatedly comes back to "and if this person is 16 years or over, then...." So the assumption is that under 16 there would be a different set of rules.
Mrs Boyd: I believe that's only in the Substitute Decisions Act. I may be wrong about that, but I think in the Substitute Decisions Act we don't allow someone to substitute their decision for an incapable person until they're 16. I believe that's the only place 16 is mentioned.
Mrs Caplan: It's for the purpose of a power of attorney.
Mrs Boyd: It's for the purposes of a power of attorney.
Dr Fisman: Okay, so it's not in consent to treatment.
Mrs Boyd: It's not there.
Dr Fisman: Thank you for pointing that out.
Mrs Caplan: Consent to treatment signed --
Mrs Boyd: My second issue: You made a comment, in terms of treatment, allowing little no-risk treatment. I know you do a lot of work with anorexics, I have reason to know how difficult that is, as a parent, and I understand entirely what your concern is.
In that situation of an anorexic child refusing to eat, under 90 pounds, what would you consider a no-risk treatment?
Dr Fisman: Under 90 pounds? Well, you know it depends on whether the 90 pounds is a critical weight for that particular kid.
Mrs Boyd: Yes, let's assume it is.
Dr Fisman: That then becomes an emergency so that isn't an issue.
Mrs Boyd: All right. So if we take that same kid, same body build and have it at 110 --
Dr Fisman: Then it's a different story.
Mrs Boyd: Okay, and what would be a no-risk treatment?
Dr Fisman: A low-risk treatment would be individual work, family work and working with the nutritionist. That is a low-risk but beneficial treatment.
Mrs Boyd: Okay, so when you talk about low-risk, you're really talking about very non-intrusive, low-risk treatments that are encouraging and supportive of the person but not in any way like force-feeding or that sort of thing?
Dr Fisman: That's right. That's not a no-risk --
Mrs Boyd: I just wanted to clarify that because I think sometimes we get a different nuance, from physicians who come forward, in terms of the continuation of treatment or some alteration in treatment that gives pause to us in terms of whether it is really little or no risk. I just wanted to ascertain that was clear.
Dr Fisman: Yes, and it really comes down to the intrusiveness of the treatment.
The Vice-Chair: Mrs Caplan, we're going to move to the government side now. The five minutes have expired.
Mrs Boyd: I'm Mrs Boyd.
The Vice-Chair: Oh, Mrs Boyd.
Mrs Caplan: I'm Mrs Caplan.
The Vice-Chair: I know who you are.
Mrs Boyd: We may look exactly alike, but --
Dr Fisman: And I'm Fisman.
The Vice-Chair: Thank you. Mr Clement.
Mr Parker: Maybe we just can't tell the Liberals and the NDP apart. That's our problem.
Mr Clement: Just getting serious for at least half a second here, I have been personally grappling with this age-of-consent issue, because in the case of good parents who care about their child -- and I know we can get into an argument about what is a good parent, bad parent -- I don't want to be putting impediments in the way. Anorexia nervosa is a very cogent point on this. I guess I have a bit of confidence that in the case of good parents and good health practitioners both agreeing that a course of treatment is necessary, and in the case of the child disagreeing with that course of treatment, our system has enough in it under this legislation to allow the parents and the health practitioners to basically have their way. If that isn't the case, if that isn't what occurs, then I would like to revisit this legislation. But I think that's the only way we can grapple with the situation and balance that off with the case where we have kids who don't have parents or who have bad parents and we need a way to deal with them as individuals and allow the treatment to take place. So I just wanted to say that.
Dr Fisman: It sounds to me as though my misreading of the act and your clarification still mean that a 14-year-old who is not competent to consent will not have to go to the Consent and Capacity Board; the parents will then consent, which is fine.
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Mrs Boyd: That's right.
Mr Clement: In the first instance. They have the right to appeal, but in the first instance, you're right.
Dr Fisman: That would then solve the whole issue of the adolescent with a sexually transmitted disease who doesn't want parents to know about treatment. It doesn't solve our dilemma of treating somebody where there is some risk and not letting the parents know, the treatment going wrong and then deciding who is liable. That's a dilemma for us.
Mr Clement: That is an extraneous issue.
Dr Fisman: It's not an extraneous issue if you're a practitioner.
Mr Clement: No, but I think what I described was a risk situation.
Mrs Boyd: An ectopic pregnancy, you could treat.
Mr Clement: That's right.
Dr Fisman: Just an emergency situation.
Mrs Boyd: No, even without it, if the child agrees, you treat.
Mr Clement: Emergency situation, go right ahead.
The Vice-Chair: Ms Boyd, sorry.
Mr Clement: Emergency situation, go right ahead. No-risk situation, go right ahead. It's a risk situation, where there are costs and benefits of a course of treatment, where we get into this. That's what we're talking about.
Dr Fisman: May I ask a quick question, then? A competent 14-year-old who wants to go on the birth control pill and doesn't want parents to know can go on to the birth control pill. You don't need to let the parents know. The kid has a thrombosis, and who's liable?
Mr Clement: I'll take door number 2 for $500. I don't know the answer to that.
Mrs Boyd: I suppose with the Health Care Consent Act you should be fine.
Mrs Johns: Yes. I was going to say that as long as the child, when they're making the decision, is able to understand the decision and is able to appreciate the reasonable effects that could cause, then the health care practitioner is not liable. So the child who decides to take birth control is capable, therefore, understands --
Mrs Caplan: I agree with Helen.
Mrs Johns: Thank you. Thank you very much. If you've explained that that is a potential that could happen, then the health care practitioner is not liable.
I can't find what she's referring to here. Seems to apply to subsection 32(2) of Health Care Consent Act, but not taken directly from it.slwWith respect to section 4 -- you ask if you need clarification -- your assumption is correct. The revised act states that an informal patient between the ages of 12 and 15 may not apply to the Consent and Capacity Board for review of a decision to consent, on the person's behalf, to their admission to a psychiatric facility -- clarification as to whether this is superseded by the right of application for informal patients between the ages of 12 and 15 under section 13 of the Mental Health Act. That is correct.
The Vice-Chair: We are out of time. Dr Fisman, I want to thank you very much for your presentation.
We will stand adjourned until tomorrow morning, Windsor, at 9:30.
The committee adjourned at 1616.