ONTARIO ASSOCIATION OF CHILDREN'S MENTAL HEALTH CENTRES
ADVOCACY CENTRE FOR THE ELDERLY
THE COLLEGE OF PHYSICIANS AND SURGEONS OF ONTARIO
ONTARIO PSYCHIATRIC ASSOCIATION
ONTARIO NURSING HOME ASSOCIATION
ONTARIO PSYCHIATRIC SURVIVORS' ALLIANCE OF METRO
PSYCHIATRIC PATIENT ADVOCATE OFFICE
ONTARIO SOCIETY OF PAEDIATRIC DENTISTS
CITIZEN ADVOCACY WINDSOR-ESSEX
CONTENTS
Wednesday 12 August 1992
Advocacy Act, 1992, and companion legislation
Ontario Association of Children's Mental Health Centres
Dr Xavier Plaus, executive director, Roberts/Smart Centre, Ottawa
Suzanne Stamper, assistant director
Advocacy Centre for the Elderly
Judith Wahl, executive director
The College of Physicians and Surgeons of Ontario
Dr Michael E. Dixon, registrar
Dr Rachel Edney, president, college council
Dr George H. Morrison, past president
Bala Nambiar, senior public member, college council
Ontario Hospital Association
Dr R.J. Brian McFarlane, chairman-elect
Carolyn Shushelski, senior legal counsel
Ontario Psychiatric Association
Betty Bangay
Jennifer Bangay
Dr Brian Hoffman, psychiatrist
Ontario Nursing Home Association
Deborah Wall-Armstrong, vice-president
Fran Bouchard, nursing home administrator
Ontario Psychiatric Survivors' Alliance of Metro
Shoshannah Benmosche'
Psychiatric Patient Advocate Office
David Giuffrida, acting provincial coordinator
Ontario Dental Association
Dr Peter Fendrich, president
Ontario Society of Paediatric Dentists
Dr Jack Maltz, president
Dr Paul Andrews, secretary-treasurer
Citizen Advocacy Windsor-Essex
Shirley Jarcaig, managing director
Nola Millin, president
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
*Chair / Président: Cooper, Mike (Kitchener-Wilmot ND)
*Vice-Chair / Vice-Président: Morrow, Mark (Wentworth East/-Est ND)
*Akande, Zanana L. (St Andrew-St Patrick ND)
*Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
*Curling, Alvin (Scarborough North/-Nord L)
Harnick, Charles (Willowdale PC)
Mahoney, Steven W. (Mississauga West/-Ouest L)
*Malkowski, Gary (York East/-Est ND)
Runciman, Robert W. (Leeds-Grenville PC)
Wessenger, Paul (Simcoe Centre ND)
*Winninger, David (London South/-Sud ND)
Substitutions / Membres remplaçants:
*Cordiano, Joseph (Lawrence L) for Mr Mahoney
*Owens, Stephen (Scarborough Centre ND) for Mr Wessenger
*Sterling, Norman W. (Carleton PC) for Mr Harnick
*Sullivan, Barbara (Halton Centre L) for Mr Chiarelli
*Wilson, Jim (Simcoe West/-Ouest PC) for Mr Runciman
*In attendance / présents
Also taking part / Autres participants et participantes:
Auski, Juta, senior consultant, policy development branch, Ministry of Health
Fram, Steve, counsel, policy development division, Ministry of the Attorney General
Malkowski, Gary, parliamentary assistant to the Minister of Citizenship
Clerk / Greffière: Freedman, Lisa
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
ADVOCACY ACT, 1992, AND COMPANION LEGISLATION / LOI DE 1992 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Consideration of Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / Loi concernant la prestation de services d'intervenants en faveur des personnes vulnérables; Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care / Loi prévoyant la prise de décisions au nom d'adultes en ce qui concerne la gestion de leurs biens et le soin de leur personne; Bill 109, An Act respecting Consent to Treatment / Loi concernant le consentement au traitement; and Bill 110, An Act to amend certain Statutes of Ontario consequent upon the enactment of the Consent to Treatment Act, 1992 and the Substitute Decisions Act, 1992 / Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1992 sur le consentement au traitement et de la Loi de 1992 sur la prise de décisions au nom d'autrui.
ONTARIO ASSOCIATION OF CHILDREN'S MENTAL HEALTH CENTRES
The Chair (Mr Mike Cooper): I'd like to call this meeting of the standing committee on administration of justice to order. We'll be continuing with the second round of public hearings on the amendments to the advocacy package.
I'd like to call forward our first presenters, from the Ontario Association of Children's Mental Health Centres. Good morning. Just as a reminder, you'll be allowed a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Dr Xavier Plaus: Good morning. I'm Dr Xavier Plaus. I'm a psychologist and the executive director of the Roberts/Smart Centre in Ottawa, which is a children's mental health centre providing children's mental health services to adolescents.
Ms Suzanne Stamper: I'm Suzanne Stamper. I'm the assistant director of the Ontario Association of Children's Mental Health Centres, an umbrella organization representing 87 children's mental health centres in the province of Ontario.
Dr Plaus: The Ontario Association of Children's Mental Health Centres appreciates the opportunity to make this presentation to the standing committee on administration of justice. Our request for permission to attend at this committee was prompted by a consultation meeting for a variety of service providers on June 2, 1992. At that time, we were apprised of a very significant change in Bill 109 and collateral changes in Bill 110. More specifically, we are referencing the decision, after first reading, to drop from the bill section 8, which stated, "A person who is less than 16 years of age is presumed to be incapable with respect to the treatment, but the presumption may be rebutted."
Since that consultation meeting, the association has had time to consider in some detail the implications for the children we serve, their families and member centres. There are two basic issues raised by the proposed amendments that we wish to bring to your attention. On the one hand, there is the basic conflict between parental rights and the child's rights and, on the other, the concept of consent as it relates to the parent-child relationship. In the context of the first issue, the association supports the retention of section 8 in Bill 109. On the second, it will be made clear that the concept of capacity is too complex to be settled by a one-sided presumption of capacity over a presumption of incapacity that is totally silent on the impact of age.
The Ontario Association of Children's Mental Health Centres, as we mentioned, represents 87 treatment centres across Ontario. These centres provide a range of multidisciplinary treatment and prevention programs to children with emotional problems and their families. The association's mission is to advocate for the wellbeing of children and families, to promote an environment conducive to positive mental health for children and families and to support, promote and maintain quality children's mental health programs throughout Ontario.
The extension of freedoms and legal privileges to children and adolescents is a controversial topic in our society. Finding a balance between the competing interests of individual freedoms for children and maintenance of family autonomy and integrity is fraught with considerable difficulties. The problem arises most acutely when mentally ill children seek to exercise their right to autonomy, while sometimes acting destructively towards themselves or others, disrupting family life and ignoring those who believe they are acting beneficially on their behalf.
The perceived benefits on the side of granting children autonomy are that they may be more likely to seek treatment for socially stigmatizing health concerns if such treatment could be outside of parental involvement or awareness, that there is mounting evidence that granting them more control over treatment decisions may enhance the participation and encourage the development of self-efficacy and that expecting more autonomy and responsibility may provide requisite experience for responsible decision-making later in life.
At the same time, endowing children with greater freedoms in decision-making may be detrimental, by overwhelming their ability to consent and inducing stress and anxiety, and undermining the authority of parents, leading to family discord and compromising family integrity.
The debate on the right to self-determination in treatment decisions is hinged on whether young people are capable of providing valid informed consent. However, it must be pointed out that much of the debate is focused on physical health decisions and especially reproductive health decisions. This association's particular focus is on that subset of children and youth who are emotionally disturbed and who, by the very nature of their disorder, are frequently unwilling to participate over time in any treatment process.
In this presentation, the association wishes to speak to a number of issues that arise from Bill 109, other statutes and proposed bills.
The role of the family: In Ontario, the statute that bears most directly on the issues at hand is the Child and Family Services Act. This is also the statute that governs the operation of children's mental health centres in the province.
The first section of this statute clearly delineates a set of principles which articulate the purposes of the act. The most relevant are, and I'm sure you know them: to promote the best interests, protection and wellbeing of children; autonomy and integrity of the family unit; the least restrictive or disruptive course of action; that children's services are to respect the children's needs for continuity of care and to take into account physical and mental developmental differences among children.
The association is gravely concerned that Bill 109, if passed in its current form, will undermine the legitimate parental right and responsibility to act in the best interests of the child, aggravate relations between parent and child and force responsible parents and health practitioners into an adversarial relationship with the child.
Generally speaking, the law recognizes the right of parents to the care and custody of their children. In addition, criminal law provides that parents or persons in loco parentis are required to provide the necessities of life for children under the age of 16 years.
Similarly, in law parents are presumed to be the natural personal guardians of their children. To maintain this stewardship, however, they must act in the best interests of their children. The CFSA delineates in considerable detail when a child is in need of protection.
We wish to point out several sections of the CFSA where the authority of parents over children under 16 is recognized in statute. For example:
"A service provider may provide a residential service to a child who is less than 16 years of age only with the consent of the child's parent or, where the child is in a society's lawful custody, the society's consent, except where this act provides otherwise."
Similarly, the statute provides that, for a child under 16: On information provided by a parent, a justice of the peace may issue a warrant to apprehend a runaway child; a service provider may administer a psychotropic drug on parental consent; an application may be made to a court for commitment to secure treatment on parental consent; an application may be made to an administrator for emergency admission to secure treatment on parental consent.
Under these last two examples, the child's consent to admission to a secure treatment program is not required. However, under Bill 109 as it is proposed, treatment by a health practitioner would not be permitted during the period the child is in a locked residence, unless he or or she consents. However, treatment by a non-health practitioner, for example a social worker, would be permitted.
In a similar vein, Bill 108 speaks to the issue of care in subsection 2(2). It states: "A person who is 16 years of age or more is presumed to be capable of giving or refusing consent in connection with his or her own personal care."
This is further complicated by sections 44 and 46 of the same bill. These sections define when a person is incapable of personal care. However, the combination of subsection 2(2) and sections 44 and 46 seem to make it not possible for a person under 16 to sign a power of attorney for personal care. It appears this may create a situation where 14-year-olds under the CTA or Bill 109 could consent to complicated surgery, if not found incapable, but could not sign a power of attorney directing someone else to make a decision with respect to their clothing if they thought they were going to be incapacitated as a result of the surgery.
It is obvious from these examples that the situation is not straightforward, but that for children under 16 years of age, the authority of parents for the care and treatment of their children is given some recognition in statute.
The CFSA does recognize two limitations to this authority. The first is in regard to counselling. Section 28 states:
"A service provider may provide a counselling service to a child who is 12 years of age or older with the child's consent, and no other person's consent is required, but if the child is less than 16 years of age the service provider shall discuss with the child at the earliest appropriate opportunity the desirability of involving the child's parent."
The CFSA further provides that a residential placement and advisory committee shall review the placement when the child objects and a child over 12 may apply to the Child and Family Services Review Board for a determination of where he or she should remain or be placed.
With these perspectives in mind, the OACMHC strongly endorses this support for parental rights and responsibilities in the care and treatment of their children. Further, the OACMHC strongly endorses the retention of age 16 as the age of consent, but the presumption of the lack of capacity may be rebutted on application.
This leads us to examine the question of capacity to consent as it is influenced by the parent-child relationship.
The child's decisional capacity: The principal components of informed consent are that the consent must be informed, that is, made knowingly; competent, that is, if there's a capacity to make it intelligently, and voluntary. It's the latter two which are the foci of our concern. The question of capacity, voluntariness and the effect of a capacity ruling will be dealt with in turn.
First, capacity: The research on psychological abilities of children suggests that by the age of 14 a child's comprehension of treatment would be at the same level of reasoning as that of an adult. Thus, if reasoning ability alone is the guide, children over the age of 14 are likely to be as capable as the average adult.
However, some research also suggests that adolescence is when the child is coming to terms with individuation and separation. The result is conflict with authority figures -- parents -- and susceptibility to peer pressure. This raises the question of whether capacity is merely a function of reasoning capability or whether other psychological factors should be considered.
It is clear that a child's wishes are not coextensive with his or her best interests. The question arises, "At what point in a child's development should parents be permitted or, worse, be forced to withdraw from any participation in a child's treatment?"
An example of this occurs in the Young Offenders Act. This federal statute provides for decisional capacity by age 12, such that no order can be made unless the youth court has secured the consent of the young person. However, the giving of consent to treatment under this section is very rare, thus rendering the section effectively useless.
This result should not be surprising. For many disturbed young people, the very nature of their problems precludes them from providing consent. Children's mental health centres are very familiar with young people initially objecting to a treatment intervention but over time becoming a willing participant. This is most particularly the case in residential care. Adolescents typically arrive resistant, but in the context of a very structured program come to feel safe and secure and thus available for psychosocial intervention and treatment.
It seems clear that giving a child who is depressed, disturbed or angry the right to consent is more harmful to the child and family and more costly to society. With hostile and oppositional youth, not providing treatment results in several typical courses of events: Family functioning is impaired, the young person ends up on the street at considerable risk to him or herself, or a pattern of criminal behaviour develops, frequently resulting in incarceration.
The third component of informed consent is voluntariness. Research on this topic suggests that adolescents making treatment decisions are responsive to parental influence and generally deferent rather than reactant to parental authority. An excellent research study asked adolescents their reasons for deferring to parental authority. They tended to give four types of responses: They felt coerced, or had no choice; they wished to avoid family tension and conflict with parents; they respected parental judgement and felt their parents knew more about such matters, and they felt a need for parental support, emotionally and financially.
From this kind of research finding, there is no conclusive evidence that adolescents are incapable of voluntary consent. However, there is a suggestion that there are important differences in the quality of decision-making autonomy between adolescents and young adults.
In a recent unreported decision in June this year, the Supreme Court of Canada considered the nature of an interpersonal relationship and its impact on the capacity for consent as follows:
"The concept of consent as it operates in tort law is based on a presumption of individual autonomy and free will. It is presumed that the individual has freedom to consent or not to consent. This presumption, however, is untenable in certain circumstances. A position of relative weakness can, in some circumstances, interfere with the freedom of a person's will. Our notion of consent must, therefore, be modified to appreciate the power relationship between the parties."
Although the case before them dealt with sexual activity between a physician and patient, they drew the analogy to the parent-child relationship and others where an underlying personal or professional association creates a significant power imbalance between the parties. The court held that the mere existence of such a power dependency relationship will usually be evidence of an inequality of power such that the weaker party will not be in a position to choose freely.
Finally, it is our contention that when capacity is being considered in regard to an individual under the age of 16, two other criteria should be considered, namely, the psychological development of the child and maturity or life experience.
In a 1982 article entitled "Competence: No Longer All or None," Gaylin argued that when a person is very old, or perhaps lacking a little competence, there is a reason to allow the person to, for example, choose not to have lifesaving medical treatment. The reason is out of respect for who the person is and has become, whereas "We may deprive young people of certain privileges of autonomy out of respect for the person he might become, and out of fear that his own vision of the future may be too limited to allow even himself a proper respect for its value."
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When these considerations are taken in total, it appears that:
(a) There is considerable reason to believe the average younger, normal adolescent will be sufficiently influenced by the power dependency relationship with parents as to not be in the position to choose freely;
(b) There is a subset of adolescents who will demonstrate sufficient psychological independence as to be viewed as "emancipated," but will remain under the statutory control of their parents if they remain in the parental home while under 16;
(c) There is a further subset of adolescents who, because of emotional disorders, may possess the intellectual capacity to consent but be deficient in psychological development, maturity or life experience.
It seems important, at this point in time, to acknowledge that there's no legal formula that can be applied across all contexts. However, as one approach to a differential response, the OACMHC recommends that subsequent regulations under Bill 109 require the health practitioner to consider the psychological development of the child and maturity of life experience when considering the question of capacity.
Effect of a capacity ruling: Mandating that a health practitioner must make a capacity judgement for an adolescent under 16 has two types of negative consequences when the decision is for incapacity. These consequences can be psychological or procedural.
The psychological consequences for the child are as follows: (1) a labelling effect, being destructive to the adolescent's self-esteem; (2) a negative impact on the relationship with parents and health practitioners, and (3) an intensification of an adolescent's feelings of loss of control.
From a procedural point of view, we have two concerns. First, on the one hand, if a child over 12 is found not to have capacity, a rights adviser is informed. This is an inappropriate intrusion of the state in the parental role and responsibility. In addition, there's no way for a parent or a children's aid society to make an application to the Consent and Capacity Review Board to challenge a health practitioner's decision that a child is capable.
Second, for emergency admissions to secure treatment, there would be two regulatory bodies to which a child could appeal, the Child and Family Services Review Board and the Consent and Capacity Review Board. The OACMHC supports prior recommendations that a mechanism be established for cross-appointing members to both the Child and Family Services Review Board and the Consent and Capacity Review Board, such that the evidence can apply to both issues of committal and capacity.
Issue 3, the nature of treatment: Bill 109 at subsection 6(2) recognizes, "A person may be capable with respect to some treatments and incapable with respect to others."
As a corollary, children are capable of different decisions at different ages. The concerns that underline much of the conflict on this issue result from the type of treatment that is being envisaged. Thus, some have argued before this committee that the reference to age 16 would result in adolescents being refused or failing to seek needed health services. It is this association's contention that leaving open-ended the issue of age of consent will have the same effect; that is, some adolescents, because of the nature of the mental disorder, will refuse treatment, to the detriment of their long-term wellbeing.
Consent to treatment must be looked at differentially depending on the type of treatment involved. Those professionals supporting an extension of children's rights frequently are doing so in the context of physical health, particularly around consent to abortion, contraception and treatment of sexually transmitted diseases.
When an adolescent is asked to consent to an abortion, this is a single event in time. The evidence to date would argue that the majority of children 14 years of age and older possess the adult capacity to consent as you have defined it. What is being advocated is the child's right to seek such treatment either against parental wishes or without their involvement.
In most treatment areas, and for the majority of adolescents, either there will be no disagreement or the young person will go along with parental wishes, but there are circumstances when an independent source of action is in the child's best interests and when legislation should make this possible.
Our association fully agrees with this perspective. However, it is our contention that mental health services perforce must be handled differentially from other health concerns. Treatment services that form the core of children's mental health centre interventions with adolescents mean that consent is not a simple binary function. Rather, it is a shaping process over time by which and through which the adolescent's participation is elicited, prompted or pressured.
The major ethical and therapeutic issue in psychosocial intervention is how to accomplish pressuring for change, not in a punitive manner but in a caring and supportive atmosphere. By attempting to deal with one health problem for a particular subset of adolescents, you have created a very grave one for a different subset of adolescents and their families.
Given that one legal mechanism cannot cover all treatment contexts, the association further recommends that a logical exemption be made regarding consent to treatment and that the following clause be added to Bill 109:
"A child between the age of 14 and 16 is presumed capable to consent to an abortion or contraceptive medication but this presumption of capacity is rebuttable on application."
The association recognizes that there are potentially other areas where conflict between parent and child may arise as, for example, in kidney donation between siblings. However, in Ontario legal mechanisms are in place -- the Child and Family Services Act and proposed Bill 109 -- to handle such events.
Our recommendations then are that the association:
Strongly endorses the support of parental rights and responsibilities in the care and treatment of children;
Strongly endorses the retention of age 16 as the age of consent, but the presumption of lack of capacity may be rebutted on application;
Recommends that the subsequent regulations under Bill 109 require the health practitioner to consider the psychological development of the child and maturity or life experience when considering the question of capacity;
Suggests that a mechanism be established for cross-appointing members to both the Child and Family Services Review Board and the Consent and Capacity Review Board such that the evidence can apply to both issues of committal and capacity; and
Recommends that the following be added as subsection 8(3):
"That a child between the ages of 14 and 16 is presumed capable to consent to abortion or contraceptive medication but that this presumption is rebuttable."
Conclusion: The focus of this association's concern is that Bill 109 avoids the complex issue of child and adolescent consent by opting for an extreme solution. By remaining silent on the issue of age, great harm will be done to family integrity and mental health services for those children most in need of intervention.
One fundamental issue raised is how society should resolve the primary moral conflict between self-determination and responsible parenting. The second issue is that the question of capacity to consent is too complex to be resolved by a sweeping assumption of capacity. It is readily apparent that some middle ground must be achieved.
The association wishes the Legislature of this province to recognize that a one-sided solution to these dilemmas does not make for good law, that there's no legal mechanism that can adequately deal with all contexts involving the treatment of children, and that previous legislative efforts, particularly the CFSA, have been framed in the general context of supporting, not abrogating, family rights and responsibilities and this direction must be continued in the best interests of all.
The Chair: We have time for a quick question from each of the caucuses.
Mrs Barbara Sullivan (Halton Centre): This has been a useful brief to us. As you will know from the second round of public hearings, we have been placing a fair amount of concentration on the issue of age.
As I reread the Child and Family Services Act and the obligations that are placed there, I'd like your opinion -- and I don't know that we've pursued this with any other groups because we're trying to come to terms with the issue ourselves -- as to whether the Bill 109 definition of capacity, "A person who is capable with respect to a treatment is able to understand the information that is relevant to making a decision concerning the treatment and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision," isn't where the problem is, rather than age itself, and that determining capacity with a young person may require different criteria than determining capacity with an adult.
Dr Plaus: I think the definition of "capacity," as you've defined it in Bill 109, really comes at it from the perspective of adults, so that the components of what is implied in the question of capacity changes if you look at it from the perspective of development over time and the child's capacity to understand the information and be informed.
For example, if you inform adolescents of their rights when they first enter a residence, they are so anxious that they may say they understand and agree, but if you ask them a few days later what their rights are, they haven't a clue. They didn't hear you. So there's a problem with getting the information. I then suggest there's a problem with understanding it not solely intellectually, but in terms of framing it in terms of what is going to happen to their lives over the next few years.
You can talk to a 14-year-old girl about the effects of prostitution, but it has no meaning to her in terms of where her life is going to end up because it doesn't have any significance. What is more crucial at the moment is that she is going to be able to buy a really nice wardrobe.
Mrs Sullivan: I think the capacity decisions are being made within the context of medical treatment. As I look, by example, at the professional's determination of "capacity" of a person who may be distraught, emotionally overwrought, who may have a mental handicap, in those circumstances the health practitioner would say that this young person lacks capacity to make a decision, and the substitute decision-maker, who is the appropriate substitute decision-maker under this or another bill, should be consulted in terms of providing consent to the medical treatment.
Dr Plaus: Historically, it was a major advance when mental health was conceived within the same philosophical framework as health problems. But I think we're beyond that now. We understand that when we're talking about mental health services, when you apply the same rubric as you're applying for medical problems, you're missing some of the issues of the kind of participation the adolescent is excepted to have in arriving at the willingness to participate, for example.
For me, a good contrast is in asking a 15-year-old whether she wants to have an abortion, because then it is like a light switch; the consent is a binary yes or no. But when you're talking about involvement in a treatment process that's going to go on over a long period of time, getting an adolescent to consent to that is a crucial part of the treatment itself, because you're asking the adolescent to participate in growth and change. So the concepts of health as they apply to medical disease issues are not the same issues in terms of consent when we're talking about psychosocial or mental health problems for adolescents.
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Mr Norman W. Sterling (Carleton): First of all, I really appreciate your brief. You've done a lot of work on it.
Dr Plaus: Thank you.
Mr Sterling: It's very well done, of very high quality.
Can you tell me, if there was not the rights adviser involved, as indicated by this legislation, would you be here today?
Dr Plaus: Yes, probably. The rights adviser has added one slice of it in terms of what it does, in our view, to what is the role of parents. But at the same time, when we saw the initial version with the presumption of lack of capacity at 16, that was great. We run into problems all the time trying to treat 16- and 17-year-olds who we don't believe understand what the consequences are going to be, but I think many professionals in the mental health business said, "Okay, at least parental authority is still there for kids under 16."
But when we saw the amendment, the whole group of service providers at that meeting in June blew off the roof, because everybody got very upset that in our perception the drafters of the bill didn't understand the question of capacity as it relates to 12 to 16. So there are two issues. The rights adviser is one component of it, but there's also the issue of understanding the complexity of what is around the question of capacity when we're talking about a developing person, not an adult.
Mr Sterling: Your anger was not so much with regard to what is going to happen in the future, but the lack of understanding about what capacity meant in terms of mental health.
Dr Plaus: But our expectation is that if it was passed the way it is now, we would not be able to treat kids between 12 and 16 until things had gotten so out of control that the parents were going to withdraw their statutory rights to care for the kids and kick them out of the home. They'd end up in the care of the children's aid society or they'd be on the street and breaking the law and end up on an open custody order.
Our view is that what you're doing is preventing us from dealing with those kinds of adolescents until the problem becomes so severe that the intervention has to be mandated by law, rather than empowering the parents to say, "Look, we need assistance for our kids who are in trouble," and to seek it voluntarily.
Mr Stephen Owens (Scarborough Centre): Just in terms of your concerns with respect to age, I don't think there's clearly the magic age where all of sudden a person develops reason. I think that our legislation, in terms of having the treatment agency or physician or perhaps a worker from your agency determine capacity, is probably a more reliable test as to whether the individual understands the information, and probably more importantly, understands the consequence of either the refusal or the acceptance of the treatment. That's a situation or a language that allows situational analysis to take place, as opposed to having the magic age, whether it's 12, whether it's 16, whether it's 21, in place.
The second point is with respect to your concerns about the family involvement. I think that especially in agencies such as yours, as to the nature of the problem that children have who come to your services, be it physical abuse, sexual abuse, I have a real difficult time trying to put it in blanket language that would say, "Yes, all parents need to be involved in all situations with respect to the treatment of their kids," especially children who are coming from dysfunctional living situations.
Dr Plaus: On the face of it, that makes obvious sense, except if you are not aware of the fact that in many adolescent treatment centres, even if the adolescent has been physically or sexually abused, he or she will return home. If they've been taken out of the home and the care of their families before they're 16, they will go back when they're 16 or 17. The majority of our kids, in point of fact, end up, under some rubric or other, returning home.
My perspective on that is that if they're going to continue to be involved with their families, no matter how destructive the family is, treatment professionals need to continue to try to help the adolescents and their parents work together in some way that's going to benefit the adolescents and the families in the long run.
You can't just assume that because the child is in need of protection you're going to take the kid out of the family and the family's destructive influence is going to be, therefore, wiped out. It doesn't happen that way.
Mr Owens: No, and I think that would be a naïve presumption, to think that would happen. But in terms of the child, to individually assess him, let's take a look at a child coming from that situation. I raised the same view with the children's aid society, that you have a child who is coming out of a coercive situation, whether it's physical abuse or sexual abuse. My question is, why would you want to put them into yet another coercive situation where they're not being allowed to determine for themselves their treatment and therapeutic path?
Dr Plaus: I think that misses some of the basic dynamics of what happens to those kids. They have experienced a long period of abuse and have now done considerable acting out against society, schools, parents etc. When you bring them in, in my experience, into a residential environment that is very structured and controlled, what happens is they settle down.
The majority of kids in a very structured environment, as long as it's not punitive -- and that's where you have to find a balance between having a very structured treatment program and one that's sufficiently structured to the extent of being punitive, that's not therapeutic. But when you provide a safe and secure environment, the adolescents settle down and become available to treatment, become available to participate over time, and once that happens, you move them from a position of control by others, in their best interests, to control by themselves over time.
But this isn't an on or off switch, as I've said before; this takes time. We're talking about kids who have been physically or sexually abused over many years. To get them to the point of being responsible in terms of exercising autonomy over their own lives in a pro-social constructive manner takes time, several years.
The Chair: Dr Plaus, Ms Stamper, on behalf of this committee, I'd like to thank you for taking the time out this morning and giving us your presentation.
ADVOCACY CENTRE FOR THE ELDERLY
The Chair: I'd like to call forward our next presenters from the Advocacy Centre for the Elderly. Good morning. A reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Ms Judith Wahl: My name is Judith Wahl. I'm the executive director of the Advocacy Centre for the Elderly. I'm pleased to be back here again to be able to respond to the amendments that have been proposed to the four pieces of legislation.
We've not been very critical of most of it. We're actually in support of most of the amendments. I notice most of the amendments comply with the submissions we made at the earlier presentation, both our oral and written submissions. We've also been very pleased to have been included in this process since 1984 in the development of the legislation. Many of our comments we made along the way are reflected in the legislation.
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But I do want to make some comments about the whole system and then a few references to specific sections. Through this whole process, your committee has been receiving many different submissions and getting a great deal of criticism of all the pieces of legislation. This is very complicated legislation overall. I think ultimately it's a system that works. I'm asking you to keep a perspective on what the system you're creating is.
Similar to my previous submissions, take note that this is a decision-making system being set up. It's a reform of mentally incompetency legislation. It's a reform of the approach that we're taking to adults and children, to people within the province of Ontario and how they make decisions. We're asking you to keep this overall philosophy in mind as you look at the details. If you forget the overall philosophy, I think the details could end up conflicting with each other.
What has been proposed in the four acts is a system for individual decision-making. The simple purpose of the legislation is to make it clear that individuals have the right to make decisions for themselves unless there's clear evidence the person is not capable. This is more than being able to express a wish or a desire. I'll come back to my comments on the use of the word "wish" in the legislation. This is the ability to make decisions or express preferences, whether verbally or in some other form.
Obviously, I'm talking about the fact that many people cannot express their preferences verbally. We have to become more sensitized to seeing that people who are not able to verbalize in fact are quite capable and can express through some other form: through expressions, touch, non-verbal means, physically.
To assist the person in expressing a preference in considering options, in making decisions, that person may need some assistance. That assistance may be information. It may be assistance in speaking out in the most appropriate and effectual manner. It may be the person giving instructions to another to have him speak for him or her. This is one of the key roles of the advocate in relation to the individual.
Another key role of the advocate and others in the Consent to Treatment Act is that of rights adviser. As rights advisers, the advocates and these other rights advisers are part of a system that ensures due process protections.
But note that the advocate is not a decision-maker. We appreciate the amendments that were made to make that clear in the Advocacy Act. The advocate is also not a rescuer. The advocate takes instructions from an individual and does not make judgements for the vulnerable person. A person, even a vulnerable person, if capable of making decisions in a particular area of his or her life, is entitled to make those decisions that others, including the advocate, would not agree with. These decisions may be made for all kinds of reasons, reasons that others think are not very good but that are important for that individual. It's part of our respecting those persons' choices.
If the person is not capable of giving instructions to an advocate, the advocate should not take action on his or her own volition, with the exception of a clear emergency. That's the balancing. That's permitting the intervention in a situation of serious danger, where there's serious danger of imminent harm. Again, we appreciate the amendments that have been made to the Advocacy Act to make that clear.
We want to emphasize that, because I know other people are making representations for a broader form of non-instructed advocacy. The advocates are not decision-makers. If they act otherwise and attempt to be a rescuer or a decision-maker, then the advocate places himself or herself in a position of conflict, moving into a decision-making role from an advocacy, instruction-based role.
Other than in the most limited emergency situation, the advocate should not be able to act without instructions. The advocate should not be able to do non-instructed advocacy, because you have a decision-making system that you're creating with all the acts. You have provisions for substitute decision-makers. Those acts have to interact with each other. If you put too much into the advocacy basket and not connect it with the decision-making process, you're going to have acts in conflict.
The scheme already provides for a public safety net decision-maker, the office of the public guardian and trustee. I again emphasize that the Advocacy Commission should not be the public safety net decision-maker. This would be a conflict of interest, as the Advocacy Commission is established to control the advocacy services, not to be decision-makers. Those functions need to be very clearly defined: a decision-making system and an advocacy system.
We're in support of the general schemes that have been set out in all the acts. Ultimately, in our opinion, it's how these acts are going to be applied and interpreted and the resources that are allocated to make these acts work, and I can't emphasize that enough.
We're very concerned about the allocation of resources. So far, from our observations -- and we of course are not privy to everything that's going on -- we see a lot of resources being put into the advocacy project, which we're very supportive of, but where are the resources being placed in the rest of the system?
I'm thinking in particular of the public guardian and trustee's office. That is a very key element in the system. We have many conflicts already with the existing public trustee's office because it's not adequately supported. This system, I submit, will work to the detriment of many people unless that office as well works effectively. Some of the problems that now exist in the public trustee's office are not addressed.
Specifically, we have only a few comments on some specific sections. First of all, under the Advocacy Act, section 1, wishes and preferences: This actually applies to all the pieces of legislation. The word "wish" is used throughout the legislation: What are a person's wishes in respect to treatment or wishes in respect to decisions to be made for him?
If you look at a variety of dictionary definitions, the word "wish" is something that's unattainable. It's something you dream about, like I wish I didn't have cancer or I wish I could have chocolate cake. But a preference is something you've thought about and chosen; you've deliberated about it. I submit what we really have here in these acts is a discussion of preferences, not wishes. Preference is something deliberate.
I'm making this comment from our practice in doing advocacy for senior citizens. Many times people express to us wishes, things that they would like to have done but they don't instruct us to do. In fact, if we acted purely on the wishes, we could be acting to the detriment of our clients. We could be doing things they really didn't want done. I think that's very important to remember. That's why I'm making the distinction between the word "wish" and the word "preference". Preference is something that's thought out. We recommend that wherever the word "wishes" appears in any of the legislation, it should be replaced by the word "preference."
We're very supportive of the sections to the Advocacy Act that make the role of the Advocacy Commission clearer. Our concern was that we were unable to really see what the system was like. I think the amendments have gone a long way to clarifying the system and resolving some of the concerns others have about how the Advocacy Commission would work.
Subsection 7(2), the authorization of non-profit agencies: We support the addition of this subsection as long as this would not exclude legal services in the term "advocacy services." In my own discussions with members of the ministry, there's some confusion about what the words "advocacy services" would mean.
I'll be quite blunt. I'm talking out of self-interest. We run our own advocacy program at this point. We have an institutional advocate. We've been doing this since 1985. We've been involved in extensive education on these acts because we've been trying to support them and encourage people to respond to your committee on it. We would like to be able to further participate, particularly in the educational processes. Of course, other social services would be in conflict with the provision of independent services. I submit that legal services are not that type.
Legal services are in fact aligned with advocacy services as contemplated in this legislation. I suggest this section be amended to include the words "or legal services" after the words "advocacy services" so you can take advantage of the systems that already exist in this province and take advantage, particularly of the legal clinics, in doing education and contributing to that process in developing the advocacy services.
We support the inclusion in the act of the specific statements that an advocate must not act in a manner inconsistent with the person's instructions or wishes, again emphasizing that we would like the word "wishes" changed to "preference."
We believe that by limiting the non-instructed advocacy to the emergency situation, it coincides with the rest of the act and makes this thing work as a system and prevents the advocate from becoming the rescuer. It has a respect for the individuals' rights to make decisions that others might not think are in their own best interests, but if they're capable of making those decisions, can so make them.
The Substitute Decisions Act: Again, we're in support of most of the amendments that have been proposed to this legislation. We particularly are pleased with the inclusion of the powers to the public guardian and trustee, which I think were an omission from the earlier draft, particularly with their powers to investigate.
Our key concern here is in terms of implementation. Will the public guardian and trustee be given the appropriate resources to plan and fulfil his responsibilities and duties as set out in the act? Although I'm coming from the advocacy perspective, this is the office we have a great deal of contact with and our clients have contact with, and that office will continue to play a major role in the lives of people who have lost some degree of capacity. If that office isn't working efficiently and effectively, it will work to the detriment of these same people. It doesn't matter how many advocates you have in the system and how many lawyers and legal workers you have in the system, it won't work unless that office is properly supported.
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Will the necessary resources be made available for the education of the public and professionals working with the legislation on the details of all four pieces of legislation? I've been involved in probably over 100 presentations on these acts, many to seniors' groups and many to professionals working with seniors, and I've been appalled at the lack of information they have even on the present law, never mind the new acts. We've had repeated occurences where the Mental Health Act is not being applied appropriately, even though it was amended many years ago. Will the resources be put in there to make sure that that public information gets out to the appropriate parties?
Lastly, with respect to this legislation, the trigger to the loss of rights of the individual to make decisions for himself or herself is primarily an assessment. The assessment process and who does the assessments must not end up being a cookie-cutter, one-plan-meets-all process. This process will be implemented by regulation. Appropriate resources must be allocated to the development of the assessment process and the selection and training of assessors. The assessors are not menial workers; they're key players in whether these people's rights are respected or not.
Under the Consent to Treatment Act, section 1, rights advisers, we support the inclusion of persons other than the advocates authorized by the Advocacy Act to be rights advisers for the purposes of this act. However, it must be made clear that these additional rights advisers cannot be persons who are delivering the health and social services to the persons or associated with the health care practitioners who are determining whether this person is capable of giving consent to treatment. The rights advisers must have the same independence, be the same step removed from the health care practitioner, in order to really give that person who's allegedly incapable the due process rights that you're trying to put into the legislation. It is recommended that this section be amended to make this clear.
We also support the changes to the requirements for the advocate visit in other places. This is a practical solution in balancing to this problem. Some concern has been expressed, particularly by seniors on our board, about the ability for family members to consent to treatment. We're not making recommendations for changes to this section, but we're flagging it for you because we're very concerned, based on our experience of the warring relatives, such as the daughter from California who comes in and starts making treatment decisions for a parent who is not capable of making decisions and then it turns out that the person has had no contact with the older adult for many years. We understand the practical reasons for making this recommendation, but our concern is that it be carefully watched because this may be a section that requires amendment in the future if abuses do occur.
Development of the four pieces of legislation is only the first step in the reform of this whole system. We must all continue to be vigilant and to scrutinize how legislation is implemented and interpreted, as the protection of all of our rights depends on it.
The Chair: Thank you very much. Questions and comments?
Mrs Sullivan: I have two questions relating to your comments with respect to Bill 109. The first relates to your advice that rights advisers cannot be persons delivering services such as health and social services to the individual or persons employed or associated with the health practitioner who is making the allegations that the person is incapable of decision-making. It's my impression that the intention of the government is, because of amendments that have been made to the bill, to place the burden of employing rights advisers on the institutions that are covered in the act, whether they are hospitals, nursing homes and so on. Your view is that a rights adviser should not be associated with the delivery of treatment or health care services. Is it your view also that the rights adviser could not be the health practitioner himself or herself?
Ms Wahl: I believe that is true. It has to be somebody outside. The health practitioner has a certain role to play already. They are required to tell the person that he or she is entitled to receive rights advice. If they're also the rights adviser, they're in a position of conflict. You're asking them to do two jobs. It's the same thing with the person who is employed by the institution.
In effect, I could see a system in which you have rights advisers at a hospital, for example, but that rights adviser is not accountable to the chief executive officer. He is in some way accountable back to the advocacy system. Maybe they're funded through the health system, from the hospital system, but whether they're employed or not doesn't depend on the hospital staff, because otherwise you're going to get a situation where you're not really giving the appearance of justice. You have to give the person due process. If you're not giving them independent advice, where's your due process here?
Mr Jim Wilson (Simcoe West): Thank you very much for your presentation. What is your -- to use your word -- preference in terms of implementation of this legislation? I'm thinking in particular of the development of the regulations. Should we, for example, be legislating at this time a process by which we can ensure that the public is fully involved in the development of subsequent regulations to this legislation?
Ms Wahl: That's a hard question for me to answer, quite frankly, because I don't know enough about the processes of governments and how the regulations come into being and how the public is consulted or has it been consulted in the past.
Obviously there are key regulations to these acts. The example we're giving is about the assessment. I would think the public does have a contribution to make.
At the same time, I don't want to hold up the process of this legislation. Personally, I've been involved in this since 1984. I'm very anxious for many of my own clients that these schemes come into place at some date in the immediate future, not five years from now.
Mr Jim Wilson: But does it concern you that we, as elected representatives, are being asked to pass legislation that really doesn't contain a clear definition of what an assessor is or what the competency of an assessor would be or the rules and regulations defining assessment? I'm not even really sure what an advocate is any more, because every group comes with a different vision of what an advocate is and who these people will be and the rules and responsibilities governing the commission.
Ms Wahl: I'm not concerned enough to say, "Stop the legislation," not by any means. This is too important. There are too many parts to this legislation that are too important. I think the public and the opposition and the government have to watch very carefully the regulations that do come into play. They have to be consistent with the intent of this legislation.
Mr Jim Wilson: I mention it because, being realistic, we're not going to stop the legislation, nor have any of the parties suggested that it be stopped in whole. I think, though, it's useful to hear your comments, because now we have the opportunity to perhaps put a process in place where people will have greater input into the regulations and some assurance, because you know how regulations are done. They're published in the Gazette after the bureaucrats cook them up and they go through cabinet, and very, very often they're in place, the professionals have to deal with them, and the public is really caught off guard.
Ms Wahl: I really can't provide any more comment.
Ms Jenny Carter (Peterborough): Thank you for a well-thought-out presentation. You show that you do understand what we're trying to do with these acts.
There's one point you raised that I'd like to hear further from you about, and that is the way in which the different acts mesh together. You obviously see the advocate as doing everything possible to communicate with a vulnerable person, even if it's somebody who is non-verbal or who may be quite severely handicapped as far as expressing their preferences goes.
Do you see any conflict between advocacy and the guardianship provisions of Bill 108? Do you feel that a person might be given a guardian who, if given the support of an advocate and maybe other people around him, would be able to make his own preferences known and function without a guardian?
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Ms Wahl: I see these acts working together as a kit. That's why I keep emphasizing that you have to look at the overall scheme, because I don't see a conflict between the advocates and the guardians from my vision of this legislation. You shouldn't have a guardian if you're capable enough of functioning with assistance. I'll give you examples from some of my own clientele. I've had clients who have been aphasic, with tremendous difficulty in communication, but they are not incapable; they don't need a guardian. They can give me instructions as their advocate. It's looking at that individual situation. So you have advocacy for the individual right up to the point that they are not capable; then you have a guardian, but the guardian can work with the advocate to assist that person. We sometimes, on a rare occasion, assist family members advocating on behalf of older adults who are now incapable of giving us instructions. So it has to work as an integral system.
Ms Carter: And you feel we've got that sufficiently defined?
Ms Wahl: I think the acts define it. Again, it's going to be how it is implemented.
The Chair: Ms Wahl, on behalf of this committee, I'd like to thank you for taking the time out this morning and giving us your presentation.
THE COLLEGE OF PHYSICIANS AND SURGEONS OF ONTARIO
The Chair: I'd like to call forward out next presenters, from the College of Physicians and Surgeons of Ontario. Good morning. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourselves for the record and then proceed.
Dr Rachel Edney: Mr Chairman and committee members, thank you for the opportunity to participate in another round of public hearings on consent and advocacy. I am Dr Rachel Edney, president of the college council. With me are Dr George Morrison, past president; Mr Bala Nambiar, senior public member of council; and Dr Michael Dixon, the registrar of the college.
As you will recall, we came before you in February to warn you that the original bills would seriously jeopardize a patient's right to receive appropriate and timely treatment and that the consent act couldn't be effectively implemented unless it was workable and understandable for patients, families and practitioners.
In its amendments to those bills, the government has made significant efforts to try to resolve the problems while protecting the patient's right to consent and the interests of vulnerable persons. We believe these are fundamental principles and we believe legislation is required to protect them, but the consent and advocacy acts are still not ready to enter the real world of Ontario's front-line health care system. I hope that we can assist by providing further suggestions.
In February, I used examples from daily practice to illustrate our points. This legislation remains so complex that I believe it is the best way to discuss it again. A divorced father brings his 14-year-old daughter into my office. The mother normally has custody, but the girl is visiting the father for several days while the mother returns from an extended trip. The teen is suffering from diarrhoea and has not been able to keep much food or liquids down. The condition has lasted for two days and doesn't seem to be ending. I examine her to determine what the problem is. I find she's dehydrated and has some abdominal pain. She appears to have gastroenteritis, or stomach flu. The young woman is certainly feeling ill, but you could conclude on "reasonable grounds" that she is not experiencing "severe suffering" or at risk of "serious bodily harm." Nevertheless, she does require an intravenous solution to restore her body's fluids, and I'd like to conduct further tests to rule out more serious causes of abdominal pain. I am uncertain but suspect that her condition could be indicative of a beginning appendicitis or could even be an ectopic pregnancy. To determine this, I would order blood tests, X-rays and perhaps a laparoscopy, which is an invasive procedure where I would insert an instrument into her abdomen to visually observe the situation. I suggest she be admitted to hospital overnight.
The 14-year-old is irritable and sulky; she just wants to go home. She and her father are not getting along, and she objects strongly to my suggestions. At the moment her condition is not life-threatening but, depending on the diagnosis, it has the potential of quickly becoming a serious condition without active medical treatment.
At this point there are several possible outcomes. I accept the teenager's decision to refuse over her father's objections and she goes home. In the middle of the night she awakes with acute abdominal pain and almost dies before she gets back to hospital for emergency surgery for an ectopic pregnancy.
Or, according to Bill 109, section 10, I conclude that the teenager, because of her emotional state, is "incapable with respect to a treatment." The act is unclear as to whether or not my office will be a prescribed facility, or whether the treatment I am proposing is "a controlled act...other than a prescribed controlled act."
However, according to the bill, I advise her of my finding, give her a written notice and notify a rights adviser. The act is unclear as to who that rights adviser will be.
The teenager refuses to meet with the rights adviser, who informs me of this fact. I turn to the father who, although he does not have permanent custody of the child, is present and prepared to give consent under section 16. I accept his consent and admit the young girl to hospital where we begin intravenous fluids. Tests reveal she has simple stomach flu and she recovers quickly.
Or, finally, the teenager meets with the rights adviser. She just wants to go home, so she says she'll appeal my decision to the board. I must now ensure that she receives no treatment until either seven days have elapsed or the board has made a decision and the appeal period has elapsed. You could conclude on reasonable grounds that a case of stomach flu will be better within that time period, or you could conclude that a suspected ectopic pregnancy is a potential emergency which would, of course, allow me to treat.
However, the father is angry and takes the girl to the emergency ward where he finally convinces her to agree to the hospital doctor's proposed treatment. The tests indicates an ectopic pregnancy and she receives appropriate care.
These scenarios illustrate several points which Dr Morrison will outline.
Dr George Morrison: There has been much debate over where the government should set the age of presumed capacity at 12 or 16. If it is set at 16, as in the original Bill 109, it could prevent many young teens from consulting practitioners about birth control or sexually transmitted diseases.
If it is set at 12, as in the amended bill, you have situations where immature teenagers can make decisions that are clearly not in their best interests because of temporary emotional upset.
The parliamentary assistant, Mr Wessenger, was recently quoted in the media expressing frustration over this issue and we have sympathy for that. But the dilemma will always exist, no matter where you set the age.
The solution is to try to create the same kind of flexibility as provided by the common law where a young person between the ages of 12 and 18 makes a significant health care decision that is clearly not in his or her best interests.
As Bill 109 currently reads, the entire rights adviser/review board process must come into play in these cases when the practitioner concludes the person is incapable with respect to a treatment, thus inserting itself between the child and the parent or legal guardian in all instances of dispute. This will not work in the best interests of patients and their families.
Our recommendations therefore are that the government can substantially reduce the extent of this problem by ensuring that offices, clinics and acute care hospitals should not be a prescribed health facility.
The government has also introduced the concept of a "controlled act...other than a prescribed controlled act" as one way to try to minimize the original bill's logistical quagmire and focus its requirements on significant treatment decisions. This may also help solve the age difficulty, but the government will need to clarify how it intends to draft the appropriate regulations.
Third, we recommend that section 10 of Bill 109 be amended so that common-law principles are followed for persons between the ages of 12 and 18. In these circumstances, the health practitioner may notify the rights adviser if clauses 10(4)(a) and (b) apply, or accept the decision of the parent or guardian.
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This example also focuses on the frequently imprecise nature of an emergency. In the original Bill 109, the emergency provisions were so restrictive as to jeopardize a patient's right to appropriate and timely care. In today's example and in the scenario we used during the first hearings, we described situations that are common occurrences, where there are few solid facts and frequently no hard and fast rules. In such cases, it is the practitioner's judgement, his or her training and experience, that must guide proposed treatment decisions.
The amendments to Bill 109 have solved much of the original difficulty. A practitioner can conduct an examination without consent if it is reasonably necessary to determine if a potential emergency exists. But in our two scenarios, the definition of what constitutes an examination is very important. For the young teenager, a laparoscopy might be necessary to diagnose her condition. In our February example, I would have to do a lumbar puncture, an invasive procedure that could be considered to put the patient at some risk, but necessary to determine if she had meningitis.
In either circumstance, the existence of an emergency could not be determined reliably without diagnostic procedures that might not normally be considered part of a routine examination. The act should ensure that health practitioners can conduct an examination to the extent necessary to determine if an emergency exists.
Our recommendations are, therefore, that subsection 1(1) of Bill 109 be amended by striking the paragraph referring to treatment and substituting the following:
"`Treatment' means anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose, and includes a diagnostic evaluation or a course of treatment;
"`Diagnostic evaluation' includes the performance of such examinations or investigations as may be reasonably necessary in order to determine whether the circumstances set out in clause 22(1)(b) exist or to form the opinion set out in clause 22(2)(b) of the act."
Our two examples highlight another point, the issue of liability. Section 24 of Bill 109 states that a practitioner is not liable under this legislation if he or she acts on reasonable grounds.
In our first example, insisting the young teen be hospitalized may be reasonable if she has an ectopic pregnancy but not if she simply has stomach flu. Deciding on appropriate treatment is an exercise in professional judgement, often in the absence of solid facts. Different patients have different needs under different circumstances.
The consent bill recognizes the need for professional judgement. It asks a health care practitioner to judge whether patients are at risk of serious bodily harm, whether they are experiencing severe suffering and whether an emergency exists now or will exist 10 hours from now.
At the same time, the government is asking practitioners to observe legislation that, despite many amendments, is still exceedingly complex and technical. What is the goal here? Does the government want practitioners to act in the best interests of their patients or to act according to the letter of the law regardless?
Last year before this committee, the Minister of Health expressed concern about creating a situation where practitioners felt it necessary to observe the technical requirements of the bill rather than using common sense; we share that concern. But by setting up a bureaucratic legal standard of reasonable grounds in all circumstances, the government will encourage health care workers to observe technical compliance above all else.
If the government wishes to ensure that the interests of vulnerable or incapable people come first and do not get lost in bureaucratic interpretations of the act, then it should allow health care practitioners, whether nurses, midwives or doctors, to act in accordance with the judgement they are trained to deliver; in other words, in good faith.
The government would appear to believe that vulnerable people in need of advocacy services are best served by this approach. In section 9 of Bill 74, advocates are allowed to exercise their trained judgement in good faith. We believe all patients deserve this protection.
We see another problem in section 9. We are concerned that the government proposes to weaken its protection for vulnerable people by protecting advocates from any liability for "alleged neglect or default." If the act's requirements for qualifications and standards for advocates are to be taken seriously, and if the proposed complaint process is to have credibility, we question the need for this phrase in that bill.
Our recommendations therefore are:
Subsections 24(1) and 24(2) of Bill 109 should be amended so that practitioners may act on an apparently valid consent or refusal "that a health practitioner believes on reasonable grounds and in good faith to be sufficient for the purposes of this act."
Subsection 24(3) of Bill 109 should be amended to read, "A health practitioner who administers treatment to a person in good faith and in accordance with section 22 or 23.1 or who refrains from doing so in good faith and in accordance with section 23 is not liable for administering the treatment without consent or for failure to administer the treatment, as the case may be."
Mr Nambiar will make our final points.
Mr Bala Nambiar: Advocates will frequently work in the health care system, so great care must be taken to balance their access to information with the public's right to privacy and the government's goal of promoting quality assurance. We do not believe that sections 24 and 25 of Bill 74 achieve this. Both sections could be used to gain access to many kinds of confidential records, in some cases without the consent of the person to whom the records relate.
For regulatory colleges, that could include complaint files. For many patients the confidentiality of their complaint is very important. In hospitals advocates could see records related to quality assurance activities. Access to these files could discourage the thorough and honest peer scrutiny so critical to quality management. Both groups of files are currently subject to specific privacy rules. The government is considering steps to tighten them even further under the Public Hospitals Act and proposed confidentiality legislation.
We are particularly concerned about protecting the confidentiality of complaint files. For example, section 25 lets advocates review records relating to an individual without that person's consent if the Advocacy Commission believes that systemic policies detrimental to vulnerable persons existed in a facility or program prescribed by regulations under the act. There is no provision for a facility or organization to challenge or appeal a decision by the commission or an advocate to access such records.
What does Bill 74 mean to a woman trying to put together the emotional strength to make a complaint of sexual abuse against a doctor? It means that a patient representative at the college to whom she provides private information must warn her that the college cannot guarantee her confidentiality. Should self-regulating bodies be captured by this provision, it will create a serious barrier to patients coming forward with complaints about health professionals. It is difficult enough to encourage women who have been sexually abused by doctors to come forward. It will be almost impossible to convince them to do so if we cannot promise that their files will remain confidential.
We therefore recommend that clauses 34(1)(c) and 25(1)(c) allow access to records in the custody or control of "a person who operates a program prescribed by the regulations made under this act." Regulatory colleges should not be prescribed in these regulations. Bill 74 should prohibit access for the purposes of advocacy to records in hospitals and facilities pertaining to quality assurance activities.
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We further recommend that Bill 74 ensure that access to patient files for the purposes of individual or systemic advocacy can only be obtained with the consent of the person to whom the file pertains or the consent of his substitute decision-maker; provides for written notice to organizations identifying the specific records to be accessed; and creates a mechanism for facilities or organizations to appeal a decision by the Advocacy Commission regarding access to records.
Finally, we would like to express our continuing concerns over the complexity and implementation of these acts.
Despite the government's efforts, Bill 109 remains a very complicated piece of legislation. How will it protect the patient's rights if consumers, families and practitioners are left scratching their heads as to what its meaning is?
For example, the bill states that "If, in a place other than a psychiatric facility or prescribed health facility, a health practitioner finds that a person who is 12 years of age or more is incapable with respect to a treatment that is a controlled act within the meaning of...the Regulated Health Professions Act, 1991, other than a prescribed controlled act, the health practitioner shall ensure that the person is given a written notice (which may be in the prescribed form) indicating that the person is entitled to request a meeting with a rights adviser and is entitled to make an application to the board under section 26."
Could someone please explain what this will mean to a doctor in a community clinic?
Or what about this one, where substitute consent can be given "if the person who is present is a person described in paragraph 5, 6, 7 or 8 of subsection (1), he or she has reason to believe that a person described in an earlier paragraph of subsection (1), other than paragraph 1, 2 or 3, is available and would want to make the decision to give or refuse consent" etc.
With all due respect, I wonder if anyone can sort through that one without the legislation itself sitting handily at the patient's bedside.
Both patients and practitioners are going to have great difficulty understanding what their rights and obligations may be in certain circumstances.
As the regulatory body for the medical profession, we have serious concerns about being able to provide simple, clear policy guidance to members of the profession who want to know what they can do and under what circumstances.
For example, section 10 contains an array of different notification requirements depending on where a treatment is to occur, whether it is a controlled act, an emergency or the patient objects.
In section 13, patients will need to clearly understand how to make their wishes and preferences known and under what circumstances. They will have to understand that a casual statement to a potential substitute decision-maker today could be regarded by that person as an expressed wish tomorrow under entirely different circumstances.
Thousands of individuals, health care workers and institutions will be affected the day this bill becomes law. To ensure that it is applied consistently and not unintentionally circumvented because people can't understand it, a major public and professional education campaign will be needed before implementation. Without this, the act will not meet its objectives.
While each professional organization and regulatory college must play its part, this has to be a government-led initiative which takes the time to reach out to all health care workers as well as the public.
We therefore recommend that:
The Ministry of Health should put together a working group of health care professionals and providers, patient representatives and ministry officials to develop comprehensive and uniform policy guidelines for the public and practitioners before the act is proclaimed. These guidelines should be issued by the government as interpretative notices; and
The government should establish a consultation process regarding the regulations unders Bills 74, 108 and 109 so that potential problems can be identified before the acts are proclaimed. The process should be similar to the consultation process for regulations under the Regulated Health Professions Act.
That concludes our presentation. We look forward to your questions.
Mrs Sullivan: We appreciate this brief. I think you have provided a lot of very useful guidance to the committee in terms of recommendations with respect to liability, treatment, diagnostic evaluation and access to records. Certainly the request you make with respect to the implementation of these bills and consultation on the regulations is one I hope the government will take seriously.
I wanted to pursue with you the points you made with respect to section 10 of the bill which does two or three things, one of them defining the responsibilities of a doctor or other health care practitioner differently, depending on the different location of the diagnosis or treatment recommendation, and being very vague in terms of what would be a prescribed act or a prescribed controlled act under the regulations and what wouldn't be.
Second, as I read this, it would mean that a pelvic examination, by example, in a physician's office perhaps, would be treated differently and the obligations on the physician would be very different than if that pelvic examination were to be conducted in a hospital, assuming that a hospital is a prescribed health facility, which we don't know. I suspect that, of your recommendations, that's one that won't wash with the government.
Can you speak to that issue? I think it's highly problematic for physicians and certainly for patients.
Dr Edney: That is a real problem, just the understanding of it. I think that is the major problem, that the physician, particularly as you may have the same physician working in those two facilities, has to try and understand and remember what he or she has to do in the office as opposed to what he or she has to do in the hospital.
I think we're creating immense confusion, and with the public as well. They will have great difficulty in knowing why it is that I can do something in my office, or can't do something if they ask me not to, and the same thing doesn't apply in the hospital. I think the understanding of this for the physician is going to be extremely difficult.
Mrs Sullivan: Is there any other area of medical law, or areas where the college has jurisdiction, where you would see requirements placed on a physician that depend on the location and not on the treatment?
Dr Edney: Maybe Dr Dixon can answer that.
Dr Michael Dixon: With the exception of the Mental Health Act and the Mental Hospitals Act, no; specifically to answer your question, no, with that exclusion.
Mr Jim Wilson: I want to thank the college this morning for once again appearing before the committee and presenting us with an excellent brief and with a scenario that is quite disturbing and which you used to raise a number of concerns.
I want to say from the outset two things. One is that in my party, on the basis of the second round of these hearings, we are certainly taking a very serious look at the age issue with respect to capacity.
Second, I think we continue to be disturbed that this legislation in our view appears to be anti-professional. It appears to continue to reflect a philosophy that somehow professionals have been generally incompetent in dealing with their patients and that there's been a lack of fairness out there -- as the Premier likes to use the word constantly in other contexts -- and that the power relationships between patients and doctors have been skewed in favour of doctors. It really raises a lot of concerns that in some ways are philosophical but in other ways, none the less, are very, very disturbing.
I want to ask you, as this is the second round and there have been 199 amendments introduced, whether your comfort level is higher now with respect to the amendments that have been introduced?
Dr Edney: Yes, it undoubtedly is. We have been very pleased that we were listened to and that many amendments were introduced. I think we still do share some of your concerns that this does sometimes appear to be an act that is anti-professional, not just anti-physician but anti-nurse and many other professions.
We undoubtedly agree there are situations in which something similar to this act is needed, but that perhaps this is going to cause so much confusion when in fact there are far fewer situations in which it's really needed.
To answer your question, yes, we are more comfortable but we do share some of your concerns.
Mr Jim Wilson: I am sincerely pleased to hear that, because the legislation will go through in some form. I think that's inevitable because of the government's majority in this parliamentary democracy. None the less, I note in a press release, which you're putting out accompanying your presentation today, that you really would like to see, as I read here, a real consultation process with respect to the regulations. Do you want to expand on that concern?
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Dr Morrison: Even the introduction of the health professions legislation with its regulations has involved consultation with the people affected, all of the various colleges. There certainly is some consultation that goes on, but we see a need for even more of that. We see the need to have an expansive education program introduced and a game plan established that's already in place from the time that this legislation is ready to go, even to the extent of having some kind of interpretation bulletins that will make it clear to the practitioners of all specialties how they are to behave in given situations.
Mr Owens: Dr Morrison, I think you hit the nail on the head when you used the phrase "common sense." It's unfortunate that we as legislators cannot legislate common sense. In terms of your view of dropping the age of consent from 16 to 12, I think what you're going to find in terms of common sense, as well as what I'm sure we're going to demonstrate in terms of common law, is that the ability to understand and appreciate the consequences of the refusal or the acquiescence to a treatment is probably more important than the person's age.
I wasn't here during the February hearings when you presented the case of the person with suspected meningitis, but I guess my question is, how would you draw spinal fluid from a non-compliant patient? What has the profession done up to now in terms of dealing with individuals, whether they're 12, 16 or 47, in the light that not all patients are compliant when they're presented either in emergency or in your office?
Dr Morrison: In meningitis, a lumbar puncture done in an infant, which is perhaps the most common one in the younger age group, is done by bundling them. They clearly are under 12 and it does not apply to them but to the individual who is resisting. There is a degree of resistance where one can mollify the patient sufficiently to achieve the positioning and then do the procedure without getting into trouble. Our major concern is that you wouldn't be able to even propose doing this to them until they had given a consent. We think you should put into the law the principle of common law that says that between 12 and 18 we can apply or accept the decision of the parent or guardian in that situation.
Mr Owens: Would there be other pieces of legislation that perhaps would kick in in terms of a contagious disease like meningitis that has the potential to spread, whether it's the Health Protection and Promotion Act or other such pieces of legislation? In terms of the example of gastroenteritis, not being a medically trained person, it's my understanding that gastro has the potential to be quite serious and can potentiate an emergency. Can you not use the proposed language to treat, or even common sense again, if you have a suspicion that it's an ectopic pregnancy?
Dr Morrison: I'm going to ask the registrar to answer that question in relation to the other legislation because I'm not positive about the answer to that.
Dr Dixon: I don't think that's relevant, with respect. But I think the issue of the assessment of an emergency depends on the standard you put of whether it's a good-faith assessment or whether it's reasonable grounds. You're not really making clear what the onus on the practitioner is.
Mr Owens: You would like to see a clarity in terms of the onus.
Dr Dixon: Also, the practitioner must have the ability to make the assessment prior to making the conclusion as to whether it's an emergency or not.
The Chair: Dr Edney, Dr Morrison, Mr Nambiar, Dr Dixon, on behalf of this committee, I'd like to thank you for taking the time out of your busy schedules and coming and giving us your presentation this morning.
ONTARIO HOSPITAL ASSOCIATION
The Chair: I'd like to call forward our next presenters, from the Ontario Hospital Association. Good morning. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Dr Brian McFarlane: My name is Brian McFarlane. I'm the CEO of the Toronto Doctors Hospital, and I'm addressing the committee today in my role as chairman-elect of the Ontario Hospital Association. With me is Carolyn Shushelski. She is the senior legal counsel for the OHA.
Thank you for the opportunity to speak to the committee about Bills 74, 108 and 109 and the government's proposed amendments to these bills. The OHA would like to acknowledge the considerable efforts by the government and the committee which resulted in the introduction of the package of some 200 amendments to meet concerns raised by our association and others earlier in this process. While many of these concerns have been addressed, certain substantive issues remain outstanding and must be addressed. We will address some of these issues in our discussion today, but we would urge you to read our submission, which outlines our concerns in detail.
OHA's submission to this committee in February stressed that the bills were unworkable, they imposed an unnecessary bureaucratic barrier between patients and the delivery of care and would increase hospital operating costs at a time when the health care system is experiencing severe financial constraints. We are not here today to go over that ground yet again. However, we hope you will keep these concerns in mind to the extent that they have not yet been addressed.
First, on implementation: Once the legislation has been finalized, it must not be viewed as the journey's end; it should be regarded as the foundation from which the plan for implementation must be launched. Potentially, the greatest benefit from this legislation can be realized with the greatest number of persons only when the public and health practitioners are aware of and appreciate the potential impact that this legislation can have on them.
We believe it is essential that the government ensure that adequate provision is made for the implementation of the legislation. Specifically, this will include the education of the public about the intent and potential impact of the legislation, the education of health practitioners as to their obligations under the legislation and the consultation and participation by OHA and other interested groups in the development of regulations to be made under this legislation.
Let me first deal with the issue of education. To achieve these goals the government should ensure that an educational program is implemented on two fronts, namely the education of the public and the education of health practitioners as to their obligations. We recommend that the government ensure that the education programs for the public and health practitioners be provided prior to the implementation of the legislation.
The implementation period must be adequate to ensure that the following areas of concern are addressed in the educational programs before the legislation is actually proclaimed in force: a public education program that is intended to make individuals aware of the intent and potential impact of the legislation on them as individuals and also as family members who will have obligations under the legislation, an education program for health practitioners that is intended to make them aware of the intent of and their obligations under the legislation, and a public education program that makes individuals aware of how they can take advantage of the legislation to plan for their future health care or property management should they become incapable.
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Second, review after implementation: Upon implementation it may be that certain aspects of the legislation are problematic from a practical standpoint. Provisions should be made now to review the legislation after it has been in effect for a reasonable period of time. Following this review, the legislation could be revised if necessary.
Third, development of regulations: Many of the proposed amendments have incorporated provisions that will be prescribed by regulation. We acknowledge that such provisions may permit flexibility in the actual implementation of the legislation. Nevertheless it is difficult to provide meaningful comment on these provisions because we do not know what the provisions in the regulations will require. The regulations will be an important and integral part of the legislation. We strongly urge that the OHA and other interested groups be given an opportunity to participate and comment on the proposed regulations.
Bill 109 is proposed to be amended by substituting the term "rights adviser" for persons who were previously designated as "advocates." We support this amendment. The role, training, accountability, remuneration and availability of rights advisers must be clearly defined under Bill 109. In fact, we believe the administration and jurisdiction of rights advisers should be under the Minister of Health and the Consent to Treatment Act.
Rights advisers should provide rights advice and facilitate appeals to the Consent and Capacity Review Board. They should not overreach that mandate to become involved in systemic or case advocacy. Furthermore, rights advisers should be available 24 hours a day, seven days a week, to provide rights advice to individuals deemed incapable to consent to treatment.
The definition of "treatment" in Bill 109 has been amended to state that it does not include "a prescribed thing" which will be designated at a later date. We support amendments that will permit a greater degree of flexibility and allow for appropriate treatment to be rendered properly. However, we do not know what these regulations are to be. Thus we cannot provide meaningful comment on this proposal. We request that OHA be consulted on the development of regulations that prescribe these things under this provision.
The provision of emergency treatment is a key function of many hospitals. In our opinion the emergency provisions in subsection 22(1) should not be limited to only subsections 10(11) and (12), which deal with board applications, hearings and appeals. Rather, the emergency provisions should apply to all of section 10.
New subsection 22(3.1) introduces the word "examination" into the bill. We support this amendment. We would make a further recommendation: The definition should state that a health practitioner may perform those examinations and assessments that are necessary to make a diagnosis and/or determine whether the patient is experiencing severe suffering or is at risk of suffering serious bodily harm.
The complexity of legislation is exacerbated by the fact that the proposed amendments to section 10 of Bill 109 introduce one set of rules to be followed by health practitioners who work in a psychiatric facility or a prescribed health facility and another set of rules for those who work in other settings. We believe that a single set of rules would facilitate consistency and promote compliance. It is not clear at this time whether a public hospital will be included by regulation as a "prescribed health facility" under section 10. We believe hospitals should not be prescribed health facilities for the purpose of section 10.
Furthermore, we suggest that the finding of capacity should relate more to the kind of treatment being proposed rather than the place where the treatment is being administered. We continue to have serious concerns with respect to patients whose conditions do not fall into the emergency category. The requirements of section 10 can delay treatment where it is not emergency treatment. Persons found to be incapable of consenting to treatment may suffer from pain which is not severe in nature or may be at risk of bodily injury that is not of a serious nature. The pain cannot be alleviated or the injury treated because it does not meet the definition of emergency treatment. These persons will fall into a wide grey area and be subject to the procedural delays to treatment imposed by section 10.
Consider the case of a senior suffering from a disorder who has injured her wrist in a fall. Although her injury would not be considered an emergency, she's still in need of treatment. An attending physician must comply with section 10 of Bill 109. This could easily include notice, rights advice, board applications, hearings and appeals. The time it takes to comply with all of these steps could be days, if not weeks or perhaps longer. In the meantime the patient needs her wrist fixed.
The legislation must be amended to reflect the reality of the hospital setting. Patients arrive and they need to be treated. Even if an advocate is available within a reasonable time frame, if the patient chooses to have a board hearing the treatment must be delayed until all of the procedural elements of section 10 are satisfied. This will take days or perhaps weeks. What is to be done with the patient and his or her pain or injury? Appeals to the court from a decision of the board would take months.
Bill 74: We continue to have concerns about the extraordinary range of powers given to the advocates under Bill 74. Sections 24 and 25 of Bill 74 deal with access to records by advocates and the Advocacy Commission. These provisions give sweeping powers to advocates and the commission, but few safeguards exist in the legislation.
For example, patients can be deemed vulnerable but it is not clear who has the authority to deem them so. In the case of section 24 it appears that advocates make this determination. In the case of section 25 it is not clear whether the commission has this authority. By virtue of the definition of a vulnerable person, practically anyone could be deemed vulnerable. Once this designation is made, then certain rights by advocates and the Advocacy Commission are triggered pertaining to access to records.
Also related to the issue of access to records is the designation that someone is incapable to consent to the release of records. It appears that advocates can determine that someone is incapable to consent to release of records, but there is no requirement for that person to be advised of this or to challenge this finding. The commission has wide powers of access to vulnerable persons' records and indeed to any records in a facility. Again, there is no requirement to notify the person that his or her records are being accessed or to give the opportunity to refuse the access.
We recommend that safeguards be legislated to include such things as an assessment by a person who is trained and qualified to make determinations of incapacity, notice in writing of a finding of incapacity and a right to appeal this decision. Where a person is deemed vulnerable, he or she should be so advised. Where a person's records are to be accessed, he or she should be advised and have the opportunity to refuse the access.
The bill should also include procedural steps such as written notice to the facility or organization identifying the specific records to be accessed. The facility should be empowered to refuse to disclose certain records where the information is sensitive due to the fact that it relates to medical audit, quality assurance or risk management. The facility must be allowed to challenge this information access.
The bill contains provisions which attempt to clarify which legislation prevails. There's still some confusion since other legislation contains similar provisions. This needs to be clarified.
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A facility or organization should have the right to challenge a decision of the commission that a policy or practice of the facility is detrimental to vulnerable persons. First of all, the facility should be given written notice of the decision. Second, there should be a right of appeal up to the courts. Third, the facility should be allowed to refuse to disclose information related to other persons, peer review or medical audit information or other sensitive information.
We believe that the powers of entry given to advocates under Bill 74 are excessive and unjustified. Dispensing with warrants, and the necessity of showing a compelling reason for needing one, imperils everyone's right to privacy. An advocate could, under the bill, walk into a hospital treatment room or an intensive care unit. This is inappropriate and an extreme invasion of privacy.
We recommend that provisions similar to those for controlled access residences be put into place for facilities. This would mean that advocates could only enter common areas of the premises.
We have concerns with the composition of the Advocacy Commission. For an effective commission, the membership should be broader and include families, consumers, health care and social service professionals and providers. The bill should guarantee that these persons are included as members of the Advocacy Commission.
The legislation should include a mechanism whereby individuals who have a complaint about the decision or actions of an advocate or the Advocacy Commission may appeal for the review of those decisions.
The amendments to Bill 74 require the minister to establish an advisory committee. However, the committee is given no particular mandate. This should be formalized in the bill. Further, we believe that the committee should be required to submit an annual report to the minister and it should be tabled in the Legislature by the minister.
Bill 108: As you know, hospitals operate seven days a week, 24 hours a day. Under Bill 108, the public guardian and trustee is to establish and maintain a register of guardians of property, guardians of the person and attorneys under powers of attorney for personal care. The legislation must clarify that this register is to be available on a 24-hour basis.
We have concerns with the provision in the bill that permits more than one person to have powers of attorney for an individual's personal care. What happens in the event of a dispute? What happens if one or more attorneys are not available to make a decision? These matters should be addressed in Bill 108.
In conclusion, we believe these bills will have a significant impact on the provision of health care in this province. We appreciate the well-meaning intent of the legislation. However, in our view the legislation as proposed continues to impose obstacles to prevent health practitioners from providing proper treatment promptly in certain circumstances, and this must be rectified.
We need to develop legislation that ensures that our health care facilities are places where care and treatment of patients is the primary concern. We believe that the ultimate goal of all interested parties is to create legislation that will be workable, safe and ultimately improve the quality of life for all persons who will be affected by this legislation.
We hope our comments will be useful in achieving this mutual goal, and we thank you for the opportunity to make this presentation. We would be pleased to answers questions you may have.
The Vice-Chair (Mr Mark Morrow): Thank you very much. Any comments or questions?
Mrs Sullivan: We appreciate this brief. It's been very thorough in the analysis. We also appreciate the recommendations you've made in some detail with respect to additional amendments that would make the bills more useful.
I wanted to concentrate in questions on the remarks that you've put forward with respect to section 10. Your recommendation, which is comparable to that of the College of Physicians and Surgeons, that hospitals not be described as prescribed health facilities. My view is that the government has in fact made the amendments to section 10, including changing the advocate to the rights adviser, and will be, through regulation, in fact presenting a greater burden to the hospitals.
You've already noted that rights advisers would have to be on call 24 hours a day, year-round. In hospitals of size, clearly there'd have to be more than one available. My view is that the Ministry of Health's other shoe is going to be to say to hospitals that hospitals will have to pay for those rights advisers, employ them and provide facilities for them in the institutions. Your recommendation that public hospitals not be prescribed health facilities is one that the minister will not look favourably on. I wonder what your response to that scenario would be.
Dr McFarlane: The question of hospitals having to staff for this would be a significant impact on hospital operating budgets. As many of you are aware, there are significant operating cost constraints in hospitals today, and we need to lessen that burden rather than add to it.
Mrs Sullivan: I think that's what the intention of the ministry is. I'm certainly aware, with a 1% change this year with bed closings around the province and some areas of the province now being underserviced, that the implications would be quite extraordinary for hospitals. The difficulty, as well, for health practitioners who are working either in a hospital setting -- presuming that a hospital is a prescribed health facility -- or in another office or in a community base or on an outpatient basis is it is going to be very confusing. Without the education process and the regulation consultation, can you see it put into effect with any kind of clarity?
Dr McFarlane: Mrs Sullivan, in our presentation we stress the need for education at all levels, be it the public to educate them about the intent, the purpose, their responsibilities and rights, as well as extensive education to all levels of practitioners to have them understand their responsibilities and rights as well. So a massive education program before the legislation is put into place is our suggestion.
Mr Jim Wilson: I very much appreciate your brief, once again, this morning. On page 49 of the brief itself, you mention review and accountability of the Advocacy Commission. We have grave concerns, as is reflected in your brief, about the accountability of the commission. In terms of review of the commission, can you elaborate on what you mean there?
Ms Carolyn Shushelski: We feel there should be some kind of formal mechanism in place that could ensure that those decisions on those matters that are before the commission, at least in some public forum, can be reviewed so that we can understand exactly what matters are before it and so the public has an opportunity for that review.
Mr Jim Wilson: Do you envision any particular model there? Would a ministry take responsibility for reviewing? The auditor is going to review the books of the commission; that's in the act.
Ms Shushelski: No, we have not identified the specific model in our brief itself. I would suggest that it has to be something that can be objective and can ensure there is this objective review of the commission.
Mr Jim Wilson: I almost need another arm's-length body to review this arm's-length body?
Ms Shushelski: That was what we were envisioning.
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Mr Sterling: I'd like to say that I'm getting increasingly alarmed about the right of the advocate to this health care information. We've had it expressed by a number of groups, and I'm very much concerned about the misuse of vulnerable people's health care information and how widespread the use of that information becomes by the advocate or the commission. There seems to be nothing in Bill 74 to prevent the advocate from sharing it with all 140 other advocates. There doesn't seem to be any kind of penalty with regard to how that advocate is dealt with if in fact he shares that information with somebody else. I'm very concerned about it.
Another part I'm concerned about is the fact that we again do not have the political element from the Ministry of Health in these hearings to hear some of the most influential groups with regard to our health care system. We had, before you, the College of Physicians and Surgeons of Ontario; we have you, the Ontario Hospital Association; we have next the Ontario Psychiatric Association; we had the Ontario Association of Children's Mental Health Centres this morning; we are going to have this afternoon the Ontario Nursing Home Association. We don't have the political element from the Ministry of Health here in these hearings.
I'll tell you why it's really important in these hearings. We have three ministries involved in these bills: the Ministry of the Attorney General, the Ministry of Citizenship and the Ministry of Health. This legislation, this pack or group of bills, affects mostly the health care system. We have the Ministry of Citizenship carrying the bills, which I think is wrong, but notwithstanding that, it is here to represent its interests. How are we going to affect the decision of the government as a whole to put forward reasonable legislation when the political element from the Ministry of Health is not here?
The Minister of Health continues to say, "This should be commonsense legislation. This should be legislation which our health care professionals can put in place, where our health care institutions can put forward a reasonable program of treatment." Yet we don't have the political element here. We don't have legal counsel here from the Ministry of Health. We haven't had the parliamentary assistant for the Minister of Health here all week.
Our frustration in the opposition is that we believe that possibly we could get a good package of bills here. We're not trying to obstruct this legislation; we're trying to work towards a meaningful, workable group of bills, notwithstanding that we have some difficulty with the whole setup and the spending of $30 million to $40 million on an Advocacy Commission from which we don't think we're going to get good value for money. Notwithstanding that, we'd like to constructively work together a workable package, yet we're lacking the most important political element in these hearings. I think it's arrogant and I think it's distasteful that a government should hold sham hearings and not have the political element in these hearings.
To a group as important as the Ontario Hospital Association, a group as important at the College of Physicians and Surgeons of Ontario, I find as a member of this Legislature a great deal of discomfort that the end result of these four pieces of legislation is going to be more than imperfect. I think there are going to be some real disasters that result out there in the public after this legislation comes forward because this government has been inattentive and incompetent in how it's handling itself during these hearings.
I'm sorry I've used up my time, but I wanted to express that to you. You may be frustrated yourselves, but you are more kind and courteous than I as a member of this Legislature. I've got to tell you, I'm really concerned that when this legislation is done -- and it's very, very complex -- there are going to be some major glitches in it and they could have been dealt with if the government had been paying attention and had put its efforts and its work behind it in order to make it workable. We're really concerned.
Mr Owens: Before I ask my question, I would like to correct the record and I would appreciate it if this time would not be deducted from our allotment.
Mr Sterling has made a comment with respect to the non-attendance of the parliamentary assistant to the Minister of Health. This is in fact not true. The parliamentary assistant has been here. He was in attendance yesterday. He is not here today; he is off doing consultations with respect to the Public Hospitals Act.
The day before yesterday Mr Sterling again alleged the parliamentary assistant had never been here, which again is factually incorrect. We do have a policy adviser from the Ministry of Health who is quite capable in terms of answering questions.
Mr Sterling: He's not a politician, has nothing to do with policy.
Mr Owens: In terms of answering technical questions, we do have a --
The Chair: In fairness to our presenters, maybe we could continue with the presentation.
Mr Owens: My question, then, is either to staff from the Ministry of Citizenship or from the Ministry of Health. In terms of the rights advisers and what currently exists in health care institutions now, I gather they're called patient ombudsmen. How do we see that role interrelating? Will the rights adviser take the place of the patient adviser or the patient ombudsman, or do we see the patient ombudsman taking on the role of the rights adviser?
Ms Juta Auksi: What you're talking about now is an implementation issue, but currently in psychiatric facilities there are rights advisers operating.
Mr Owens: But also in acute care hospitals; for instance, the Toronto General Hospital has what it would call a patient ombudsman who takes on the role of advocate on the patient's behalf if there are problems within that institution that the patient has identified. Will the position of rights adviser usurp or take over the position of patient ombudsman or will there be two different individuals operating within that institution with respect to patient rights?
Ms Auksi: This is, as I say, an implementation issue that's certainly not an obvious conclusion to draw. As you've heard in the hearings, there are concerns that people would have about conflict of interest if it's someone working within the hospital setting. So the actual development of a program of rights advisers is something that comes at the next stage, and how much rights advice would happen depends on what the limits of the role of rights adviser are. The amendments that have been put forward involve a lot less rights advice than would have occurred under the original bill, and the question, then, is how to do that in an efficient manner. If you're not going to have rights advice needed very frequently in any one place, then presumably it would have to be organized in a way that you don't have someone sitting around waiting for a call, but rather a way of plugging into a rights advice system as needed in a cost-efficient and timely way.
Ms Carter: With respect to Bill 74, this legislation, of course, is to empower the vulnerable -- that is what it's all about -- to protect them from neglect, abuse or not having their preferences respected. In light of that, I'd like to question three of the points you raised.
One is access to records. In addition to helping individuals, the advocates have the power to carry out systemic changes, and they need to access records for that reason, because they find that there's a whole group of vulnerable people who have a problem that they share because of what is happening in some institution or whatever. So I put that before you.
Regarding rights of access, the object is that the vulnerable person must be able to meet privately with an advocate. So I hope that when you say they should only enter common areas of premises and so on, you would bear in mind that this is what we're trying to achieve, and, of course, if the vulnerable person doesn't want to see them, they have to leave immediately.
Regarding the composition of the Advocacy Commission, with respect, I think if we adopted your suggestion there we would lose the whole point of what we are trying to do. The intent is to have representatives of vulnerable groups on that commission so that it will act, as it were, from their point of view and in their interest.
Of course, as you mentioned, we do have an amendment which gives an advisory committee which will have people from families and so on represented on it. I would just like your comments on those points.
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Dr McFarlane: I'll just comment on the advisory committee and Carolyn will answer your other questions. At the moment this bill has not been formalized and we were unable to comment on that because we're not sure what its mandate will be. We're waiting for the opportunity to comment on that. Carolyn may speak to your other points.
Ms Shushelski: With respect to the facilities and the access by advocates to facilities, I certainly understand and respect what you're saying: The intention is to empower the vulnerable persons. The only difficulty we're having -- and I'm going to speak about a hospital and most particularly an acute care facility -- is that even now I think if relatives want to visit their family members there are certain hours that are restricted, and even outside those hours, at the very least they announce themselves before they enter the room, for obvious reasons. There are things of the most personal nature going on in hospitals every moment of the day and it could prove to be embarrassing or humiliating to have people just be able to walk anywhere they want.
Ms Carter: I question whether that would in fact happen, but if it did, maybe it would be unfortunate.
Ms Shushelski: I guess what we're saying is that the way the legislation is written it could happen and what we're doing is drawing that to your attention. Maybe there's some middle ground that can be reached here. What we're saying is at least we should have the ability to know that this person, who's really a stranger to the hospital and to the patients, is entering the hospital, who the person wants to see, and even be escorted to check that the patient is in a state that's reasonable to receive someone. I don't think it's unreasonable to really ask that much.
As to the records issue, our concern overall is that the records in the facility certainly relate individually to patients. There could be the patient's individual records. There are also records that are in the facility that relate to peer review, quality assurance, many kinds of records such as that. OHA and other groups, such as OMA, have argued for many years to be able to have a provision that would exempt that kind of material from access by outside bodies for the very reason that this kind of discussion, dialogue and comment that goes on within the facility is intended to promote better health care overall. If we have that material available to outside bodies, it will increase the likelihood that there'll be a reduction in the amount of discussion and overall improvement in health care. That's how part of the policing goes on within the institution. That's a reality, and those records are very important to us.
The fact that the commission has this overall ability to basically say that in that facility it believes there are vulnerable persons and you may access those certain records is the concern that we have. We've argued for a long time and we feel now we're just gaining some ground. As the College of Physicians and Surgeons mentioned, the Public Hospitals Act Review Steering Committee is making the recommendation that peer review information will be exempt. If we override that in this legislation, it sort of takes us back to square one and perhaps makes it even more difficult for us.
The Chair: Mr McFarlane, Ms Shushelski, on behalf of this committee I'd like to thank you for taking the time out this morning to give us your presentation.
ONTARIO PSYCHIATRIC ASSOCIATION
The Chair: I'd like to call forward our next presenters, from the Ontario Psychiatric Association. Good morning. Just a reminder: You'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Dr Brian Hoffman: I am Dr Brian Hoffman, a psychiatrist. At my side are Jennifer Bangay and her mother, Betty Bangay, who are relatives of a psychotic patient currently refusing treatment.
I wish to make some comments about the proposed legislation, allow the Bangay family to tell you their plight and then ask you to re-examine your proposals to see which sections will help mentally ill patients to receive treatment and which sections will prevent psychotic patients from receiving effective treatment in our society.
I am here representing the views of the Ontario Psychiatric Association, with over 1,100 psychiatrists in the province. I graduated from medical school in 1966, 26 years ago, and have had a family practice and a psychiatric practice since then. At the present time I am director of the psychiatric day hospital and a teacher at Mount Sinai Hospital in Toronto. I chair the legislative review committee of the Ontario Psychiatric Association, which is why I am here today to respond to your legislation.
I want to give Jennifer Bangay and her mother an opportunity to describe a current situation they are having with Valerie, a 28-year-old woman who is the sister and daughter of these two women with us. I first met them only last Friday, after a psychiatrist who had treated their relative had called me to ask if there was anything else he could do to get their relative help.
My image of your work is that perhaps you sometimes get bored with all the posturing, the political statements and the dogma, and you might appreciate an opportunity to look at the reality of how your work will improve the lives of many of the mentally ill and how it could prevent treatment of others.
I believe we must make it easier for the families to help their ill relatives. We are not here only to help the families of them, though, because there is no "them." We are here to help ourselves. My mother was psychotic for the last 20 years of her life until her death; I'm told David Reville's son committed suicide, and Martin Barkin's brother is schizophrenic -- 1% of our relatives will have schizophrenia at some point in their lives. Many more than that will require psychiatric treatment for short or longer periods of time. We must make it easier for competent patients to make decisions about treatment before they become incompetent, and for substitute decision-makers chosen by the patient and for family members and others to make decisions for the incompetent patient.
Ontario laws for years have ignored the mentally ill and have given them the right to remain psychotic, and through legislation Ontario has guaranteed that the mentally ill will receive more rights and less treatment than comparable medically ill patients. This is especially so when the rights advisers and the advocates are hostile to the health care systems and introduce a high level of adversarial conflict to the therapeutic setting and therapeutic relationships. This adversarial approach is the only possible result if the consent legislation does not state its purpose in the preamble. That is that it is there to protect the rights of the competent patients and to ensure the treatment and rights of the incompetent patient. If this is unstated, then the advocates will of course come in thinking they are there only to ensure rights. Rights are not much good to you if you're dead and they're not much good to you if you're psychotic.
You, as politicians, are no longer on the cutting edge of legislation. Twenty years ago you were among the first to restrict involuntary hospitalization to dangerous patients. Many of the states followed on the civil rights bandwagon. We have stayed there.
Since then, over 30 states have revised their laws, loosening the requirement for dangerousness and allowing more psychiatric patients to receive treatment while ensuring their rights. In my opinion you are still in the legislative backwater by interfering with psychiatric treatment and not giving families the authority to look after their relatives, by introducing more procedural safeguards for the mentally ill than for the medically ill, as if the medically ill need protection from family and from therapists. You have not ensured that psychiatric patients receive the same rights as medically ill patients. In fact, you give them more rights and therefore less right to health and treatment.
You are moving less quickly than many other jurisdictions in the States, in Europe, and even in the Middle East. Your legislation still discriminates against psychiatric patients by giving incompetent psychiatric patients the right to thwart their treatment, even when similar patients with brain disease or incompetent medical patients would receive necessary treatment.
Let's hear from a family, a family that I've only known for five days, and then I will make a few additional comments to look at specifics about your legislation.
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Ms Jennifer Bangay: My sister Valerie was diagnosed as a schizophrenic just over two years ago. She remained untreated for one year because shortly after she was diagnosed she became pregnant and neuroleptics are not recommended during pregnancy.
One month after the birth of her child, she had a psychotic episode. She was hospitalized by the police under a form 1, reluctantly agreed to be treated, and within days she was vastly improved and able to return home.
At some time during the fall of 1991, she stopped taking the medication. Her mental state slowly deteriorated and by May, 1992, she was again seriously delusional and psychotic. My mother went to the courts to get a form 2 from a justice of the peace and Valerie was again admitted into the hospital by the police. This time she refused the medication.
After the 72-hour holding period allowed under the law, the psychiatrist recommended that we apply some pressure by giving her the choice between living at home with the medication and living on her own. Reluctantly, we agreed, naïvely believing that she would be provided with accommodation while she contemplated her options. Instead, Valerie was released and she disappeared.
She called us from time to time but refused to tell us where she was. Two weeks later she wandered home and my mother allowed her to stay at home while she decided which option to choose. She again became delusional and psychotic, phoned 911 and told the police that I was feeding her baby cocaine from a popsicle stick. The police came, quickly understood the situation and tried to get Valerie to go to the hospital. She refused and again left the house.
That night, although we didn't realize it at the time, she slept outside underneath my mother's bedroom window. She hung around town for a few days, then disappeared into Toronto and we have not heard from her since. She is, however, in regular contact with the minister of our church. He is her last link to our family.
I'd like to give you some background. Valerie stood at the top of her class throughout public school and high school, and I mean at the top of her class. She trained in gymnastics with the Winstonettes at the time they were being coached by members of Canada's national team. She held summer jobs, she dressed well, she had a boyfriend.
After completing high school in four years instead of five, she went to the University of Toronto to study sciences and, despite the onset and development of this illness during her university career, Valerie graduate in the top 15% of her class.
During university, Valerie began to have unexplainable outbursts of anger, which occurred more frequently as time passed. As she became more abusive, her social and her family life became unpleasant, which compounded her discontent. She began to tell lies. Her arguments became more and more annoying to others, because as the illness progressed, she lost the ability to articulate in a logical process of thought. Her self-esteem suffered one blow after another as she lost the ability to maintain personal relationships, and she began to sleep an inordinate amount of the time, I believe from depression. Meanwhile her stories become ever more dramatic.
When she began to have psychotic episodes, drugs became her rationale. She missed an exam and explained this by telling us that she had seen the professor doing a drug deal and he was out to get her. She claimed he later put drugs in her drink while she was at the pub. She paid some con artist $750 because he told her he would protect her from "them." Two days after attending a party, she claimed she had been forcibly injected with drugs, but she was at home the day in between and she was fine. She was accepted into teachers college in Edmonton but was asked to leave after accusing one of the individuals under whom she was practice teaching of being involved with drugs. Throughout her pregnancy, Valerie was obsessed with the idea that she had AIDS and herpes and that the baby would also contract them. More recently, she has registered complaints with the police about drug deals she has witnessed and restaurants where she got food poisoning. With drugs as a running theme in her illness, is it surprising that she won't take the medication she so desperately needs?
My family has an endless list of worries, and I'd like to tell you about four of them.
1. When Valerie accuses me of feeding her baby cocaine, I understand that she is ill, and although it hurts to have her stand and tell the police and accuse me of having already been in jail once for trafficking, I would not press charges against her. Other people may not react the same way. We are afraid Valerie is going to find herself in court under mischief charges, defamation of character charges, damages to business charges. The courts will treat her as if she's normal. The teacher in Edmonton threatened to have her charged, and no wonder. Can you imagine the effect that accusation could have on his career?
2. Valerie's life is full of delusional terror and bitterness because no one will help her to prove that she has been a victim of crime. Her range of emotion when not psychotic is flat and depressed. She is always sad and convinced that the worst is happening. She gets no joy from her life, not even from her daughter. Her intellectual potential and desire to contribute is being wasted and frustrated, and her chances for a normal life with normal relationships are becoming less possible as more and more of her acquaintances realize that she is mentally ill.
3. Valerie's daughter, who is the light of my life, is, thankfully, blissfully unaware of the problem right now, but as she gets older, we worry about the impact on her.
4. Valerie's illness has consumed my family for the past two years. We are all victims of her illness. My mother is terribly fatigued. At 65, she is the main caretaker of Valerie's daughter, but the care of the baby is nothing compared to the stress my mother is under in trying to care for Valerie, who requires far more of her time and energy than the baby does.
I have some problems with the way human rights are being applied to the mentally ill, and I'd like to give you an example to explain that.
My neighbour also has a sister who is mentally ill. Thankfully, she is under treatment. She told my neighbour that when she was ill, her mind worked on two levels. On the first level, she was angry, and this anger was projected to the outside world by abusing, accusing and blaming her family and others for her delusional problems. This level was unable to articulate the real reasons why she needed help. I believe that this is the level that is causing Valerie to refuse her medication.
The second level knew the first level was bizarre but couldn't prevent it from saying all the hurtful things. This second level suffered from auditory hallucinations, causing her to believe that she had told her family about her illness and her need for help, and at this level of understanding she could not comprehend why her family would not help her. She felt that no one cared enough about her to help her. I have lived with and watched Valerie for five years, and I believe that she feels this way too.
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How do you apply human rights legislation in a case like this? Is it only the level that screams at the outside world that is heard? What about the silent level that the patient thinks she has projected? Will it never be heard?
My family is a close but not a suffocating family. We do not want to control Valerie's life. We do not want to control her finances. We don't want to control where she lives. We know from our experience in living with her that the more normally we treat her, the more normally she acts when she's not psychotic. We do, however, want to help her to live as full a life as possible. We feel that under the current law, it is preventing us from helping Valerie's second level of thought have its say. We are frustrated and angry that someone with so much potential and a beautiful daughter to care for is being prevented, by an intrusive law, from being helped. My brother, my sisters and I have discussed the fact that this is a genetic illness; it's "There but for the grace of God go I." We all agree that if we were Valerie and Valerie were one of us, we would want her to do everything in her power to help us to lead as normal a life as possible. We keep asking ourselves how a cold, distant law can take precedence over the collective wisdom of her family. We are the ones who love her.
Please, before you make the final changes to these laws, make sure you consider the terror and unhappiness of the untreated schizophrenics. Make sure you consider the impact they have on their families and on their community and make sure you consider Valerie's silent voice. Thank you.
Dr Hoffman: This patient has schizophrenia. We believe it is largely an organic or physical illness. It is not caused by unemployment or poverty. Such patients drift down to unemployment and poverty. It is not caused by the family or family disruption; not in this family and not in the Sabatino family, where Dominic was shot just two days ago, and not in other families.
Tomorrow you will hear a joint presentation led by the Ontario Medical Association in conjunction with the Alzheimer Association, the College of Nurses, the College of Physicians and Surgeons, the Ontario Friends of Schizophrenics, the Ontario Hospital Association and the Registered Nurses' Association of Ontario.
We have read their submission and agree with the many questions they have raised: The powers and lack of accountability of the advocates, their wish to restrict rights advice to the incompetent patient when there's a controlled act, rather than defining settings and the lack of substance to the definition of "patient wishes."
However, as a psychiatrist I want to underline and look at this family -- two or three specific points that pertain to psychiatric patients. On page 22 of the submission you will have tomorrow, or maybe already have, that conglomerate of diverse groups points out how the emergency admission procedures discriminate against psychiatric care. Tell this family that you're going to discriminate against psychiatric patients by not allowing an admission, even if a medical patient with similar symptoms would need admission, someone with multiple sclerosis, someone with a brain tumour. Tell this family that you're leaving the law as it is.
On page 26 they discuss how the advance directive of competent psychiatric patients can be thwarted when they become incompetent. Tell this family that you're going to allow psychiatric patients, when they're incompetent, to thwart their own advance directives, but that you don't plan to do that with someone with a physical condition.
Many coroners' inquests have come to the same conclusion. They have to know what a coroner's inquest is. It's an investigation into a death. The findings are made by a jury. The jurors are laypeople. They hear the evidence and they come forward with recommendations. Inquest after inquest of impartial jurors has said: "The laws interfere with the treatment of psychiatric patients. They interfere with the rights of families to look after their ill. They don't define their purpose."
I refer to the death of Hendrick Looman in November 1989, Margaret Miller in August 1989, Paul Pendock in March 1989, Timothy Gamble on November 22, 1989, Stella Lacroix in 1989 and Ronald Davies in 1989. One, two, three, four, five, six coroners' inquests in a single year, and all of their requests have been ignored despite their impartiality and a consistent thrust to ask for more authority and responsibility for the family to look after their ill and for better laws to allow the treatment of medically ill, and this can be done without encroaching on their rights.
I have told this family, in my one interview with them, that they may be able to get their relative some help, some treatment, a year from now when these laws are passed.
There are changes that you're making. Some of the strengths are: the definition of competency; the use of advance directives, including powers of attorney, a clear list of substitute decision-makers including guardians under the Substitute Decisions Act, patient representatives appointed by the board, other family members and finally the public guardian and trustee, who can all act as substitute decision-makers; the principles of substitute decisions; the improvement of some emergency provisions, at least for the medically ill; and the notification of rights advisers in some settings and with some procedures.
I have also told this family that they may not be able to get their relative treatment where they would if the patient had a medical illness because these amendments do not really address the need and the right of the incompetent psychiatric patient to receive treatment and the right and the responsibility of the family to the patient after the rights advisers and the lawyers have gone home. This is a family that wants to look after its ill. The Sabatino family wanted to look after its member. What do we give these people in our society? We give them streets; we give them bullets; we give them suicide as an option.
One of the weaknesses in the legislation is the lack of relatives on the Advocacy Commission. How can you have incompetent psychiatric patients on the Advocacy Commission? Obviously you can't, so who's going to represent them -- less ill people or perhaps people who have never been schizophrenic or people with other forms of mental illness who don't know what it's like to be incompetent but know what it's like to live with? You're telling these people, "You're not needed on the Advocacy Commission." Yet where do you want the patient to go when treatment fails, to the lawyer's office or home?
The Chair: Excuse me, Dr Hoffman. Our half-hour is almost up, so if you could wrap it up, please.
Dr Hoffman: Okay. Other weaknesses are: advance directives can be appealed by the incompetent psychiatric patient but not by other patients; the restriction of psychiatric admissions and treatment in an emergency setting under subsection 22(9); restrictions to a psychiatric admission if a psychiatric patient objects. Will their relative object? Of course. Notification of a rights adviser and an adversarial tenor is immediately sent when a psychiatric patient is found to be incompetent in a setting, even if a controlled act is not being prescribed. You always introduce an adversarial role into the psychiatric setting with the incompetent patient which you do not introduce with other medically ill patients under the current proposals.
Last, the patient's wishes when competent would be very hard to determine. It is likely that the vague and fuzzy wishes of their daughter when she's incompetent would be confused but would be convincingly argued by the patient's lawyer and advocate, thereby preventing treatment.
I end my presentation and ask you to ask questions.
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Mrs Sullivan: This has been a very poignant brief to us, because it really does bring the reality of the schizophrenic patient living within a family who is seeking treatment for that patient. I am quite concerned, and actually it's an opportunity for us to raise subsection 19(2) of the Consent to Treatment Act, which it seems to me provides an incorrect impression that a substitute decision-maker under the Consent to Treatment Act will be able to consent to admission to a mental facility, a psychiatric facility. In fact that's not the case, and we will have to have an amendment to that section, and I don't think this has been raised before in committee. I think Bill 108 has it correctly under section 56, but Bill 109 is quite incorrect in 19(2) and will continue to be incorrect even with changes in the law, and I hope that will be taken into account. Other than to note that, I don't have questions.
Mr Joseph Cordiano (Lawrence): I just wanted to make a brief comment. I am a substitution on this committee, but I just wanted to say that obviously this is an issue I've come in contact with on a number of occasions with constituents in my own riding. I know what you've said here today is increasingly important and is very touching to me personally, because I've heard these pleas from a variety of people in my riding, both personal friends and others who suffer similar circumstances.
Being only a substitution on this committee, I think I would ask members of the committee to look at what you've said very carefully, to listen to those concerns, and I know that in my capacity as only a substitution here this week I would make that endeavour to look at the sections which apply to those aspects of the concerns you've raised today. Having been the critic at one time for this area, when this legislation was introduced we raised these concerns as a party at that time. I think further work needs to be done in this area in these pieces of legislation to look after those very, very poignant matters you've brought before us today. Thank you very much.
Mr Sterling: I'd like to thank particularly the family for coming forward. I know it must have been very difficult for you to do this in front of a legislative committee. We have had other families in front of this committee.
I think that from our point of view, Mr Wilson and I from the Conservative Party have recognized that there is a significant problem with this particular mental illness and governments in the past not dealing with it. We only feel that, in terms of our bias at this point in time, we would be very much more prone to the right of a psychiatric patient to treatment rather than the right to consent to treatment.
We believe, I think, that with this legislation in the Advocacy Act, the culmination of these acts leads the health care provider to the conclusion that there is an adversarial process which is being set up under these acts, which we disapprove of. We basically trust health care providers in terms of what they have done in the past for various patients, either in a psychiatric setting or a medical setting, and this legislation calls into question the integrity of health care professions and unnecessarily so.
I am frustrated, as Mr Cordiano is, from time to time when I have mothers and sisters of schizophrenic patients come into my riding office, which I had two weeks ago, telling a similar story as to how they can help or cannot help their family members. I believe the law has to go even further than some of the few helps in Bill 108 to deal with this problem. I believe that should we get another opportunity to come back to government then we would strengthen the hand of families in dealing with, in particular, schizophrenic patients, because I believe it is a different disease, it is a different illness and perhaps we need some specific legislation to deal with the treatment of these individuals in our society.
It's also very costly for our health care system to maintain its present blindness to the disease. I just wanted to let you know that we will be fighting, in terms of the amendments, for some of the suggestions you've put forward to this committee.
Mr David Winninger (London South): At the outset of your presentation, which I thought was very moving, you indicated that there was a lot of political posturing that went on that you detected. Unfortunately that's often all too true as politicians descend into the arena and sometimes take cheap political shots, but hopefully we can ignore that kind of posturing and get on with the necessary changes that have to be made.
I, like you, have a family member who's schizophrenic. I know Mr Wilson has said on the record that he does too. I have a brother who was at the top of his class, well socialized. All that changed overnight when he was 18. He's become withdrawn and is very maladapted.
Fortunately there are some changes that are being introduced with our legislative package that change our ability to afford the necessary treatment to schizophrenic patients, such as you describe. At the same time that my family has an interest in seeing that my brother receives necessary treatment, I am interested that his civil rights are respected and complied with. I think there's a very fine balance between the need to treat and the need to respect and affirm a patient's rights.
Under Bill 108, the Substitute Decisions Act, there are changes that will be implemented that will make it a little easier, perhaps, to treat a non-compliant psychiatric patient. I allude to the expedited validation of powers of attorney; I allude to guardianship, whereby a guardian can make a decision to admit a patient and to have a patient treated, and that's deemed to be voluntary.
Furthermore, as a result of numerous submissions that were made detailing the plight of a psychiatric patient who realizes and acknowledges that there may be times when that patient lacks the lucidity to consent to treatment but would later, after receiving the treatment, admit that it was very helpful to have that treatment and to stabilize him or her, we've introduced an amendment, which we call the Ulysses clause, which allows a specialized power of attorney to be drawn directing an attorney to make those kinds of decisions.
So I think this government has gone a long way towards obviating the kind of difficulties that you expressed today, because this revolving door of psychiatric patients going in and out of treatment and the difficulty that people like you encounter when you try to get an order from the justice of the peace for treatment, a form 2, is well documented. So I don't think it's quite fair to say that no changes are being made to meet the concern, and I particularly took umbrage when you suggested that we're not responding to the needs of these vulnerable people. I give you the recent example of the setting up of the Lightman commission, an investigation into the kind of abuse that goes on in unregulated boarding homes. We really have to be sensitive to the stories we've heard, in the initial stage of these hearings, from psychiatric survivors who have encountered all kinds of abuse within the system.
While I applaud your efforts to improve and ameliorate the condition of your family members, I also think we have to be very careful in how we go about that so that whatever changes we invoke we're still respecting their rights as individuals and their human dignity.
The Chair: Thank you, Mr Winninger. Dr Hoffman, Ms Bangay and Mrs Bangay, on behalf of this committee I'd like to thank you.
Mrs Betty Bangay: May I say one thing? You're going to have to hurry your laws up, because a lot of people are going down the drain while they're waiting for you to dither along and take one little step at a time. It's only common sense: A schizophrenic in a psychotic condition is completely irrational, and it's common sense that an irrational person cannot make a rational decision. A rational decision is to be helped, and that's what I want you to think about. I think it's about time that you stopped dilly-dallying around and got to work and got it cleared up. That's the point.
Mr Winninger: Just one point: Some of the changes you're asking for are also being considered in our review of the Mental Health Act, which is a separate review from the one we're involved with today, admissions to psychiatric facilities.
The Chair: Thank you, Mr Winninger.
Mrs Bangay: I hope you'll do your very best.
The Chair: Once again, on behalf of this committee I'd like to thank you for taking the time out and giving us your presentation today.
This committee stands recessed until 1:30 this afternoon.
The committee recessed at 1232.
AFTERNOON SITTING
The committee resumed at 1351.
ONTARIO NURSING HOME ASSOCIATION
The Chair: I would like to call this meeting back to order. I'd like to call forward our first presenters from the Ontario Nursing Home Association. Good afternoon. Sorry for the delay. As you know, you'll be allowed a half-hour for your presentation. The committee would appreciate it if you'd keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Ms Deborah Wall-Armstrong: My name is Deborah Wall-Armstrong. I'm a vice-president and board member of the Ontario Nursing Home Association. I'm also a lawyer and I represent the owner of a 110-bed nursing home in Barrie. With me today is Fran Bouchard, a registered nurse and the administrator of that same home. Mrs Bouchard has worked directly for many years with long-term care residents before assuming her administrative duties. Our role here today is as spokespersons for the members of the Ontario Nursing Home Association.
These members represent almost 300 nursing homes in Ontario which provide care to over 27,000 seniors. We have outlined in the past to this committee a profile of our residents which bears repeating. This information was the result of a randomly selected survey of 50 nursing homes done for a director of nursing consensus conference.
The outline indicates that 75% of our residents are moderately to severely cognitively impaired. This means they have difficulty making decisions. They're not oriented to time, place, person. They are unable to form judgements. They're unable to follow instructions and their memory is impaired. They're not capable of learning new skills or information.
Thirty per cent of our residents are immobile, requiring total assistance of one or two persons to move. The remaining 70% require some degree of assistance with mobility.
Fifty-four per cent of residents have behavioural problems, such as aggression, wandering, screaming, hoarding. Eight per cent of residents are unresponsive in that they are unable to communicate either because of physical problems, such as a stroke, or they're semi-comatose. Sixty per cent of residents have difficulty communicating because of psychosis, aphasia, language barrier or an inability to transmit or understand communications. Twenty per cent of our residents have no family or next of kin.
With the proposed changes resulting from the redirection in long-term care, we will see an increase in the number and severity of resident cognitive impairments. This means that theoretically 100% of the residents will require substitute decision-makers for personal care eventually. More residents will have aggressive behaviour problems. These behaviours impact on the rights of other residents and we can foresee an increase in advocacy service to determine which residents' rights will prevail.
In general, all care levels will increase and there will be less family involvement and support. Those with family support are expected to remain at home.
As you can see, our sector is anticipating a major impact by these pieces of legislation right from day one. All our residents fall under the definition of "vulnerable," and many thousands are "incapable" as to person and property. At present, our staff and physician advisers work comfortably within the boundaries of common practice guidelines to care for residents in a fashion that they feel does not expose themselves as care givers to significant liability.
This package of legislation, while recognized as needed, strikes fear in the hearts of many of those care givers. In our ever-increasingly litigious society, that fear spells a real threat to the care of the residents. Individuals who have to respond to resident needs will become unsure of their right to act or disagree about the technical requirements.
Avoiding these glitches will be critical to the quality of care and even the lives of thousands of our residents. The most acute time will be in the initial days, weeks and months of implementation. If we have the bogged-down effect that has happened with some acts -- and what comes to mind is SCOE, support and custody order enforcement -- then we see ourselves having to face crisis management and unnecessary threats to lives. None of us wants that. You don't want it; we don't want it.
We were pleased to see the many extensive amendments which the government has already introduced; however, there are many substantive and technical issues that continue to be of concern to us. We've given you our paper and time does not permit me to read the whole of the paper. I would ask that you please read it carefully because we do make several comments there on certain key considerations. At this point I will just review certain ones.
Our association was a member of the ad hoc committee that presented yesterday and we endorse all the recommendations of that committee's report. Of special concern to us are the general needs for checks and balances for the Advocacy Act.
The things that are recommended deal with giving vulnerable individuals the right to challenge the finding of "vulnerable" if they oppose its implications, providing an accountability of the commission and advocates, looking at a need for a natural justice provision to apply to the commission's dealings with facilities or organizations, establishing an appropriate infrastructure, and last but certainly not least, limiting the advocate's right to warrantless entry.
We treat and usually are encouraged by government to treat our facilities as the home of our residents. Their rights to privacy should be respected as much in a nursing home as in their own home, and we see no need to diminish their right to privacy by virtue of their mere need to live in a long-term care facility.
In Bill 109, I want to particularly draw your attention to the section in our paper dealing with the definition of "treatment." We find that the definition of "treatment" is so broad that it will affect virtually everything we do with residents and consequently tie us up in a continual bureaucracy of obtaining consents.
We recommend that the legislation recognize the use of care plans that are used in long-term care facilities. If I can take a moment just to highlight from our brief, we feel a more effective definition for residents in long-term care facilities would be to allow a blanket consent upon admission for the care plan which outlines the day-to-day nursing and personal care, social and restorative, spiritual and recreational activities. Only physician-prescribed procedures that are invasive or that do not happen on a regular basis should be subject to a separate consent.
We therefore recommend that section 1 dealing with definition of "treatment" in Bill 109 be amended to read: "In long-term care facilities, a plan of treatment shall not include a plan of care which outlines the day-to-day nursing and personal care, social, restorative, spiritual and recreational activities, if it's been consented to by the individual or their duly authorized substitute decision-maker as to person. The plan of treatment does include in long-term care facilities any prescribed procedure by a health care provider that's invasive or does not occur on a regular basis."
We'd also recommend that a transitional provision should also be considered for a specific time, allowing care providers to rely on pre-existing plans of care in the case of those incapable residents who are in existence at the time of implementation of the act. This would dramatically ease a concern we have about transition and allow for the required time for the appointment of substitute decision-makers for care for thousands of our residents.
We know, practically speaking, that even right now, when we need to have the public guardian step in to even deal with procedures for palliative care for dying patients when there is no next of kin, that procedure takes four months, as it stands at the moment, and if they're going to be potentially thousands of applications, we have no idea how long it would take for us to get those decision-makers in place who would be needed from day one.
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Many of our concerns about Bill 109, we feel, could be dealt with successfully by an implementation task force. Those concerns include the sections in our paper dealing with evaluating capacity, "emergency treatment" definition, the concept of global incapacity, statements by family members, and other implementation concerns that are highlighted.
In Bill 108, I specifically want to draw your attention to our concerns about subsection 65(2) dealing with "change of person's residence." This is an area that very much concerns, from a practical standpoint, the people in the nursing home industry, in that it deals with the requirement, before changing an incapable person's place of residence to a more restrictive setting, to outline requirements, to notify the public guardian and trustee of the incapable person and others, or involve the courts on an application to authorize the change.
We've had discussions with ministry staff, who have indicated that they interpret that the movement between types of living environments, as well as moves within an environment, will be deemed movement to a more restrictive setting. We find that this seems to be an unreasonable request and may delay required care.
It's important to note in here that what we're talking about is that the majority of moves for a more restrictive setting in our sector are based on care requirements. For example, if we have an aggressive resident who needs to be placed for his own safety or the safety of others, he can't wait for days for bureaucratic decisions to be made; otherwise it is likely to cause injury either to himself or certainly others around him.
Further, we anticipate that there will be a large number of applications under this section. We aren't sure whether it would overwhelm the system itself and cause delays in processing the applications for transfer. We would ask that you consider that it be more appropriate to have a review of the decision to move, after the fact, should the incapable person appear to be dissatisfied or not appropriate for the setting.
As you can see, my comments earlier on about the resident's profile would indicate that this kind of problem with aggressive residents will only increase with time.
In summation, I want to point out that our members are totally regulated in regard to funding and we have for many years had to deal with underfunding, so any cost to our facilities to provide the education to staff will need to be appropriately budgeted for by government. I'm aware that the long-term care reform funding does not have provision for this extra cost factor at the moment. New money will need to be committed for it.
We cannot stress to you enough the need for a practical and thorough approach to implementation. Serious problems in implementation could cost some of our residents their lives. We feel the best protection for the public will be the education of both the public, those in the new advocacy infrastructure and the care providers in advance of implementation.
Mrs Fran Bouchard: I would only like to add one comment, and that is, that as a front-line member of the care team, I can't emphasize enough the importance of a well-planned implementation of this legislation, so that we can continue to provide care for the residents who are entrusted in our care.
The Chair: Questions and comments?
Mr Jim Wilson: Thank you very much for your brief. You are correct in stating that a number of these concerns have been mentioned in previous briefs. Please be assured that we want to be as helpful as we can on many of the recommendations that you have made. I think many of them are very good.
There is one here, though, I just happened across that I hadn't really noticed before, and that was that you mention on page 20 of your brief, point 13, about advisory physicians and the requirement now for nursing homes to have an advisory physician. Is there a difficulty now, as you state, in getting advisory physicians? I think you made an excellent point, that with the added burden this legislation creates, that could even more difficult without some sort of financial compensation built in.
Mrs Bouchard: It's very difficult. We are currently fortunate to have an advisory physician, but he himself is having some serious concerns about the legislation which is coming, because it's going to make it much more difficult for him to even see a resident to do an admission physical.
Ms Wall-Armstrong: In our particular home that we're dealing with, we have a significant number of individuals who would require a substitute decision-maker and they are not readily available. He anticipates some really serious implementation concerns.
But it's a chronic problem across the industry, not just with our home, just because of the paperwork involved currently under the Nursing Homes Act, and I know under the reform for long-term care and the funding formula that part of that is being looked at for existing problems, but there are no additional funds that are being put in here that we're aware of to deal with what we would anticipate to be an increased burden to the physician advisers.
Mr Jim Wilson: A hypothetical question really that asks for some speculation on your part, but when I had the opportunity -- it wasn't in a nursing home specifically; it was homes for the aged in my riding as recently as two weeks ago -- to explain to the residents there because I was asked to come in and speak on this legislation, I found little or no support for it when I explained it, and we had someone else from sort of the other side to explain it.
As we've heard in a lot of these submissions, people were more concerned about resources and services than they were about rights. Now maybe this is an exceptional home. I don't really think it's exceptional other than my aunt is head of nursing and I know they get exceptional care there, but there were no complaints. I'm in there regularly to give plaques to people for their 90th birthdays and that sort of thing. Do you think that your residents are really crying out for the type of advocacy services that are envisioned here and that encompass nursing homes?
Ms Wall-Armstrong: From our standpoint, we don't see it as a major problem or concern. Our residents, particularly in nursing homes, are more interested in care and in the care that's going to be available. I mean, it's part of the reason that you had the whole issue raised about the funding issue in the nursing homes themselves and the amount of moneys that were available just for resident care. That was sort of their first priority ahead of that --
Mr Jim Wilson: It's much easier to envision the need for this legislation in psychiatric facilities and when you're dealing with psychiatric patients than it really is in terms of nursing homes, so I appreciate your comments there.
Ms Wall-Armstrong: They're really more interested that the nursing home be a home-like setting and that the care be there in a home-like setting as much as possible.
Mr Winninger: I think it's acknowledged by most people that there are homes that provide extremely good quality nursing care, and I don't think anyone intends any legislation that would take away from the ability of good nursing homes to provide quality care, but there have been well publicized instances of abuse or neglect or exploitation.
I'd be a little concerned about a blanket clause on admission that a patient would sign that would enable a nursing home to conduct a plan of care in perpetuity, as it were, because that's what would happen if you would restrict the definition of treatment to just invasive treatment by physicians.
You could have a patient admitted to a nursing home with a plan of toileting, for example, but then let's say the patient becomes incontinent. There have been examples I've read about in which nursing home residents have actually been strapped down on beds, just because they happen to be incontinent, to keep them in place. That sort of change in a regimen of nursing care wouldn't attract the kind of attention perhaps it should if we were to adopt your narrow definition of treatment. That's just one example.
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Ms Wall-Armstrong: Currently nursing homes are one of the most highly regulated and highly inspected facilities. There's no question that there's abuse. There's abuse in any process, in any situation. However, considering the amount of regulation in nursing homes and the amount of inspection that is currently being done, I really question whether this legislation itself is going to be any more helpful.
I would really question that the challenge to -- from the residents' standpoint themselves, whether on the other side you have several people who, if you want to change toileting, if you have to change them, you have to obtain their consent every time and you get tied up in that bureaucratic process, whether you may not cause more problems in that particular one because just changing an individual who becomes incontinent by definition is a treatment that requires consent. If that person is also incapable, virtually you could see, from a technical standpoint, somebody saying, "You have to have a consent every time you want to change them."
Mr Winninger: I guess it's a matter of degree. I'm not saying every day you need to invoke an advocate and these heroic measures. All I'm saying is that if there's a substantial change in what constitutes treatment, you shouldn't have a blanket clause that the nursing home can rely on that would preclude access to the kind of advocacy that people outside the nursing homes would be entitled to.
Ms Wall-Armstrong: If you notice, though, when we talked about that, the care plan had to be agreed to by the individual. If there was a concern, for example, in toileting and individuals are capable, then they can require a change to their care plan. If they're incapable, they would then have a substitute decision-maker who would be required to make that change. They also still have availability to advocate services and, if they felt they weren't being dealt with on it, the advocate could question the challenging of the care plan as well.
That doesn't preclude the involvement of an advocate on there. It only deals with a practical solution to having to get consent for everything you're doing from changing a dressing to changing somebody's diaper, any kind of care like that on a day-to-day basis that could involve many times a day getting that consent, particularly from an incapable person. We're not trying to remove their ability to get assistance if they're not being cared for properly.
Mrs Bouchard: I would also like to add that the care plan is an evolving process. The care plan is not only devised by the members, the nursing staff themselves; we include the residents and the families, whoever has a particular interest in that resident, to help us develop and change the care plan as things progress.
Ms Wall-Armstrong: Care plans have been very well used in long-term care facilities for a long period of time. There is a multidiscipline plan that is developed on it. It isn't just the nursing home or any long-term care facility that makes up the plan without consultation from many parties.
Mr Winninger: All I wanted to add is that the nursing homes and residents I've talked to must be different from the ones Mr Wilson has consulted with because they welcome the changes that we've introduced.
Mr Owens: I just had a quick question around your concerns with respect to change of residence. Could you maybe explain that a little bit more?
Ms Wall-Armstrong: Around the change of residence, a good example might be a nursing home that's set up almost in an apartment-style building. Usually your most mobile and your cognitive residents would be on the main floor, giving them easiest access to outside. If you have people who have advanced Alzheimer's or you have aggressive residents, you may have actually a particular floor that they are on that the staff are aware that these people have these problems.
Mr Owens: Generally described as a locked-in unit, I guess.
Ms Wall-Armstrong: No, you're not allowed to do a lock-in. It's not a locked-in unit. But if they're up on the second floor, it may be easier to catch somebody who has Alzheimer's and who is a wanderer and stop him from leaving the building. They are already on, say, the second floor of a building as opposed to being on the ground floor. That might be one good example of that change in location.
Some homes don't have that tiered level at all. It may be that for them it's easier to have all of their wanderers in a particular wing. But you still cannot lock in. You don't have a locked-in unit. You're not allowed to. Certainly our regulations don't allow for that.
The Chair: Ms Wall-Armstrong, Mrs Bouchard, on behalf of this committee I'd like to thank you for taking the time out this afternoon and giving us your presentation.
ONTARIO PSYCHIATRIC SURVIVORS' ALLIANCE OF METRO
The Chair: I'd like to call forward our next presenters from the Ontario Psychiatric Survivors' Alliance of Metro. Good afternoon. Just to remind you that you'll be allowed up to a half-hour for your presentation. We would appreciate it if you'd keep your remarks to about 15 minutes so we'll have time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the committee and then proceed.
Ms Shoshannah Benmosche': I'm Shoshannah Benmosche', again presenting for Metro OPSA, Ontario Psychiatric Survivors' Alliance.
We would like to thank this committee for this opportunity to respond to the progress you have made with respect to the advocacy legislation package. We feel that you have heard us, that the legislation has been improved by many of the changes you have made and that you have not forgotten why and how urgently we need this legislation. Thank you. Please press on and put it forward. It is already in a form that substantially meets our most critical and urgent needs.
For our part, we recommit ourselves to continuing to assist you in its ongoing perfection by providing feedback on the impact it is having on us. We are encouraged by your response and will provide this feedback as long as it is welcomed and received with an open mind and an open heart. Communication seems to flow freely when its results are mutually beneficial, when communication takes the form of a lateral, even-handed dialogue, however peculiar and democratic this concept of partnership may seem to some mainstream mental health practitioners when scuttling to implement the Graham report in time for the next budget.
Our support for and our suggestions regarding the amended proposals in the advocacy package have been comprehensively addressed in both of the submissions made by the Ontario Advocacy Coalition. Our mother organization, OPSA, is a member of the coalition and our membership's views have been consistently represented at OAC meetings. We have only one correction to make to their August 6 written presentation: on the suggested wording for section 3 of the Consent to Treatment Act, the words "present...serious harm" should be corrected to read "prevent...serious harm."
We will therefore use the remaining time allotted to us in an effort to enhance your personal appreciation of the one most serious flaw we have found in the package. We think that clause 56(4)(c) and clause 56(6)(b) of the Substitute Decisions Act, 1992 are contrary to the Charter of Rights and Freedoms.
Long ago, corporal punishment, notably the use of the yardstick in elementary schools, was legal and practised on offending students in Ontario for their own good. We have outlawed the practice in favour of more humane encouragement. This standing committee has been advised by experts of every persuasion. Their opinions are at variance. However, we are grateful that schools no longer beat our children into submission.
But the legislatively sanctioned use of cattle prods on certain groups of people somehow managed to sneak its way into this proposed legislation which is purportedly designed to protect these very persons. We have been enlightened by professionals who only use these electric shock devices for educational and therapeutic purposes. What a relief. Ontario is the only province in Canada to embrace this practice. That's a relief too.
We leave it to the members of this committee to decide if they would like history to remember them for deciding that cruel and unusual punishment, referred to as "aversive conditioning" in subsections 56(4) and 56(6) of the Substitute Decisions Act, 1992 ought to be permissible anywhere in Canada. We wonder how it crept into the legislation. We and other caring people would like it removed. It does not belong in this legislation.
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Let us take a closer look at aversive conditioning, sometimes referred to as aversion therapy. As a point of clarification, "aversive" refers to the arousal of deep-seated dislike for something. To induce a state of aversion in the patient or inmate, the therapist must incite feelings of fear and repugnance excited by something offensive. It is difficult to receive this as a gift of love. The point at issue here is whether lawmakers should allow therapists or educators or trainers unrestricted freedom to choose the methods by which they bring their subjects to such a state of fear and repugnance. The condition of someone who is experiencing anger is not bettered by adding fear to their experience. Nor is the condition of someone experiencing confusion or difficulty in expressing themselves in ways we can understand improved in a context of fear, hatred and futility.
Aversive conditioning is referred to by some as therapy. Others call it torture. This is usually when it is used in another country, or in a less humanitarian context than Ontario's care facilities. We are sure of that, most of the time. It is happening now, as we speak, in Ontario homes for the elderly, group homes for children, on psychogeriatric wards, and in institutions for the developmentally handicapped. It is used to punish and control by imposing conditions of fear, through the use of instruments of torture such as cattle prods.
We are not comforted by the knowledge that such practices may not be redressed when 20 years from now the results of our continuing neglect are shoved under the nose of public scrutiny at the whim of the media. In the event this legislation is not passed now, we will again be forced to content ourselves with periodic public inquiries into the abuses of the next "20 years ago," perhaps in perpetuity.
While debating the humanity and efficacy of controversial therapies is perhaps beyond your mandate, we submit that giving such practices the misinformed blessing of this standing committee is contrary to the intent and purposes of this legislation, which is to protect vulnerable persons from abuse and neglect.
We made an attempt to obtain and present a cattle prod for the examination of this committee in order to accelerate the learning curve and to elevate our discussion beyond the abstract bafflegab of experts, and to inform us all, in concrete terms, of what we are talking about. However, when we used the words "learning curve," "cattle prod," "personal experience," and "informed consent" in the same breath, the prospective lender of this loathsome device became worried that it was our intent to use it on the members present.
The owner of the cattle prod was obviously unaware that we are opposed to the use of cattle prods on any human being, including elected politicians, who would be subjected to mind-controlling drugs if a past president of the American Psychological Association had his way. We find his expert opinion unjustifiable and wish to lend it no credence. We hope the members of the committee agree and join us in our ethical and practical rejection of this repugnant idea.
We realize this is a logical leap and may seem akin to comparing apples and oranges. However, justification for the use of mind-controlling drugs and electrical shocks spring from the same ethical basis, and one of them was advocated by the eminent psychologist for use on you. Both are repugnant. Both produce desired effects for very limited duration and must be repeated unto death, and both purport to help an individual and society by the use of harmful and brutal techniques for our own good.
You, the members of this committee, are proposing to permit a judge to order repulsive acts to be performed, for example on your young niece, or the old woman who sleeps underneath Nathan Phillips Square, or the little girl who lives with her abusive, alcoholic father in Thornhill.
A judge will be conferred, by you, the power to order dehumanizing treatment, a coercive act against the wishes of a vulnerable child or adult that few people in this room -- even, we hope, few judges -- would find permissible under any circumstances were they forced to be present or a party to its perpetration. No legislator, no judge, no substitute decider is likely to seek out opportunities to participate in brutal acts of torture, unless they are themselves brutalized or sadists; nor is it required by the Substitute Decisions Act, 1992, that their consent be free or even that it be informed, either by personal experience directly or indirectly.
We are aware that cattle prods are presently employed in many Ontario care facilities, and routinely so in some. We are aware of only one instance of free and informed consent to the use of a cattle prod on a person. It was for the purpose of learning what the experience felt like. It was not administered with disinterest or malice, but curiosity regarding its effect. The recipient of the shock told me that it was very painful and he would not willingly permit the recurrence.
We think that responsible, caring adults would not permit such harming of themselves or any other human being. We think that no qualified substitute decider could consent to any treatment that he or she would not consent to for themselves and on their own behalf if they were in similar circumstances.
How, then, does abuse happen? It happens when we ignore it; when someone else does it, not us; when we believe that it only happens elsewhere and deny that it happens here. It happens when care givers are socialized into routinely using inhumane methods, when violence against the least audible, least powerful, among us is tolerated, and especially when we give abuse legislative sanction.
If the standing committee abrogates its responsibility to make choices about the way human beings in Ontario are cared for, then those choices will be made by others who may not share your values or our values. When there exists the possibility that the legal power of the state may be abused to permit the suspension of the rights and privileges of individual human beings, legislators must exercise extreme caution.
We recommend that you delete permission to inflict unjustifiable pain or to harm vulnerable persons and pass the package with its present provisions for ongoingly correcting it.
We hope we have left you enough time for your questions this time around. Thank you for giving us another crack at it. I'd like personally to thank all of those many, many survivors who contributed to this and contributed to informing me and have given me moral support to come again before you. Thank you.
The Vice-Chair: Thank you very much. Comments or questions?
Mr Owens: The first time I became aware that cattle prods were still being used in this province was a presentation by David Baker from ARCH, and I can't believe that in 1992, with the literature that exists with respect to aversive therapy, that this kind of treatment is still ongoing.
My concern in terms of the clause you address at this point is that until, hopefully, our government addresses this issue, do you not see it being needed in terms of a preventive so that --
Ms Benmosche': What is needed in terms of a preventive?
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Mr Owens: In terms of not allowing a guardian to consent to this type of treatment until it can be removed from use.
Ms Benmosche': I don't think that if you list it within the array of treatments that are permissible to be ordered by a judge, to be given permission by a substitute decision-maker -- I don't understand the question exactly. I don't know whether you mean that there should be a ban on it pending its listing as a dangerous weapon that should not be used on human beings; that goes without saying. I don't quite understand what it is that you are asking.
Mr Owens: I guess my question is that in terms of the clause that you've addressed in section 56 --
Ms Benmosche': It says that they may permit such other procedures or treatments or whatever; I don't have the thing right in front of me right now. But it is among the things that may be ordered or added to the substitute decision order. It's in the Substitute Decisions Act.
Mr Owens: I'm clearly in agreement with your comments in terms of having this type of aversion therapy taken out of practice --
Ms Benmosche': I don't think it should be practised at all.
Mr Owens: -- in this province, whether it's ECT, whether it's --
Ms Benmosche': I would add ECT to that, for sure.
Mr Owens: Or whether it's cattle prods. I guess my question is, then, that until that can be legislatively done, is it not better to have the clause --
Ms Benmosche': To have it regulated, is what you're saying?
Mr Owens: That's right, clause 56(4)(c).
Ms Benmosche': I really thought about what could we possibly accept as a regulation of this, and about the only thing I could come up with was taking the handle off so that the person administering the shock would be getting an equal amount of shock; that if it was that loving and important to administer to this person, it must be good enough for the giver as well to receive simultaneously.
Mr Owens: While it's certainly not on the subject, Chair, I would like, if possible, that we be provided with the names of institutions that are using this.
Ms Benmosche': Have you received no requests from presenters that it be retained?
Mr Owens: Not as yet. Not in my sitting on this --
Ms Benmosche': I would suggest that anyone who wants it retained is probably using it.
I have no personal experience of its being used on me in any way, malicious or out of curiosity. I've gotten quite a jolt from a fence that I misrigged on a battery once, and I do electrical work and I've been bounced a few times, but I've never, ever been in a situation of incarceration where a cattle prod was used or even threatened to be used on me. So, no, I personally have not; however, I have acquaintances and friends who were in that situation. I must admit that they are developmentally handicapped persons, and that this is a very daily and real experience for many of them.
Mr Owens: I want to again express my horror and disgust, Chair, that this type of abuse is going on. If we read any kind of United Nations conventions with respect to the treatment of people they call prisoners, you will not see the use of these kinds of implements on people. I think we should clearly pursue that in another forum.
The Vice-Chair: I want to thank you very much for taking the time to appear before us today.
Ms Benmosche': Thank you.
PSYCHIATRIC PATIENT ADVOCATE OFFICE
The Vice-Chair: Next is the Psychiatric Patient Advocate Office. Thank you for appearing before us. As you know, you have a half-hour. The committee would appreciate it if you would divide that and give them some time to ask you questions. Begin when you want, and would you please state your name for the record.
Mr David Giuffrida: I'm David Giuffrida, acting provincial coordinator of the Psychiatric Patient Advocate Office. Our program is one of more than 30 member organizations of the Ontario Advocacy Coalition. I had the privilege of speaking to this committee last week as one of three representatives of the coalition.
I believe the submission of the patient advocate office has been circulated to you. I thought the committee might appreciate its brevity. Having participated in the drafting of a 24-page document on behalf of the coalition, I thought there was probably little I need to add in writing to that.
What I wanted to do was to focus attention on some particular provisions in the coalition's brief. On one issue that was in the brief presented by the coalition in January, advocacy for children in care, I am certainly available to discuss any points raised in the coalition brief that I'm not proposing to raise myself with you, if you've had any questions about the brief since you last had an opportunity to read it. I know that presenters between last week and now have touched upon some related issues about perhaps recasting the definition of treatment, for example, and issues about who is going to be the rights adviser and who is going to pay for rights advisers.
I also have some additional copies of the advocacy coalition brief with me for those of you who may wish to refer to the wording of it but might not have brought it with you since we last presented to you.
I'd like first to talk about Bill 74 and about advocacy for children in care. I am no closer to understanding why the Advocacy Act is adults-only legislation than I was when it was introduced. Some of the most vulnerable people are people in institutions, and of those people in institutions, some of the most vulnerable of them have to be children. The proposition seems so self-evident from the most cursory review of the print and electronic media.
I enclosed some articles selected almost at random for your perusal, one being "Girls Abused at Hospital, Report Says." This April 1992 article touches upon a report generated by our program in respect of the London adolescent unit at London Psychiatric Hospital. Conditions there have been significantly improved.
I only draw attention to perhaps a two-year-old issue to point out to you just how bad things can get in a situation where there is abuse in the exercise of authority. This included male staff stripping teenage girls naked. Some of these girls reported having been survivors of childhood sexual abuse. Whether or not there was any sexual content in that transaction on the part of the health care staff -- and they of course denied there was -- it's more than likely that there was significant sexual content and feelings of violation on the part of the girls.
Who was there to listen to them? The patient advocate office was, because we have advocates in the 10 provincial psychiatric hospitals including two, London Psychiatric Hospital and Whitby Psychiatric Hospital, that have adolescent units.
When the patient advocate office moves under the commission and becomes bound by the Advocacy Act, if it remains adult-only legislation we are going to have to tell the young adults and children in these two units that we'll no longer be able to help them assert their rights. I have no adequate explanation for it and I have no alternatives to offer to them.
I'd like to suggest that Bill 74 be modified to include advocacy for children in care, which is the coalition's submission. This would not be advocacy for every vulnerable child -- every child with a disability perhaps living happily at home with family. It would be for the most vulnerable children with disabilities who live in institutional settings and perhaps have no family who visit them regularly.
Alternatively, you could at least add a regulation-making power that would allow you to add by regulation children in certain settings as you see fit and as cabinet sees fit. At least there would be the opportunity to add in regulation the two units we now serve so at least children who now receive advocacy services aren't denied them.
I'd like to touch upon non-instructed advocacy in Bill 74. We were pleased to see the significant amendments to Bill 74 since it was introduced to increase the services provided to the most vulnerable people who are unable to instruct an advocate. I was able to hear the submission on behalf of the Alzheimer society where they noted the very large numbers of Ontarians who have Alzheimer's disease and are predicted to have it in the future and the large number of those people who may then end up in our nursing homes.
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I think it's probably likely that only a small minority of them in those institutional settings will at some point become at risk of serious bodily harm. I think many people with Alzheimer's at the end stage of Alzheimer's will not be able to instruct an advocate. It's part of the course of the illness. Very few of them will reach the threshold that currently exists in the Advocacy Act to benefit from the service of an advocate: that of harm to the person.
I would predict that probably quite a significant number of them will suffer from poor-quality care. That might include being tied in a chair much longer than their clinical needs require or their security needs require. They'll be tied in the chair for hours and hours because the institution is short-staffed and doesn't have someone to walk around with them and make sure they don't fall. They'll be fed too hurriedly with a purée diet shoved into their mouths too quickly by an overworked staff person who has to feed five people in a short period of time. They'll sit in urine-soaked clothes if they're incontinent and there's inadequate staff to meet those needs, and on and on and on.
There are many quality-of-care issues that an advocate can detect and be effective in helping remedy, but not if the legislation obliges us to turn a blind eye to those important issues but those issues that fall short of being life-threatening.
I'd like to speak about access to information. There are a couple of categories of documents that, as Bill 74 is currently worded, would not be available to advocates. These are documents that the advocates employed by the Psychiatric Patient Advocate Office have had access to since our program began in 1983 and that we find vital to the discharge of our obligations. They include hospital policy manuals. These manuals deal with what authority the hospital asserts to search people upon admission to the hospital, what authority it searches to restrain and confine people, to allow them to have access to visitors, to the telephone -- any of a number of issues dealing with quality of care and dealing with the rights and liberties that a person enjoys in an institutional setting.
It's very difficult to advocate effectively for individual clients if you don't know what policy is being applied to those clients that is being used to restrict their liberties. It's almost impossible to do systemic advocacy to change a system when you don't have access to the documents that document the decisions the system is making now.
As recently as the last week or two I have become aware of a patients' rights organization that tried to get access to the policy in one hospital on stripping patients. Having regard to the article that's included with my materials, you can see why it would be interesting to them to know in what circumstances the hospital thinks it can strip a person's clothes off. They were told, "You can't see that." The provincial psychiatric hospitals are government-run hospitals, and under the Freedom of Information and Protection of Privacy Act they're accessible institutions. In fact, I know a private lawyer who has pried these policy manuals out of the provincial psychiatric hospitals using the freedom of information act.
The public hospitals are not under the freedom of information act; nursing homes are not under it. If they decide that they don't want members of the public to see their policy manuals, the public advocates, consumers themselves, won't see them. It's important to make the statement that these are accessible. That also includes ward motion reports. They might report someone who's been in seclusion since Friday afternoon. The advocate reads the report on Monday morning and decides that this is a person who might want to talk to an advocate and can't dial a phone right now because he's in four-point restraints. These are important documents.
Subsection 27(2) of Bill 74 would deny an advocate access to any information in a record that fits the definition of personal information in the freedom of information act. That's superficially, I guess, a sympathetic provision because we all want to be protective of other people's privacy. But it's flawed and should be removed.
The definition of "personal information" in the freedom of information act can be too broad for these situations. If there is an allegation in a clinical record that the patient's father sexually abused her, that might be relevant to an advocacy issue. The patient may want to see that record, may want the advocate to see that record, may want him to act on that information. Is that the personal information about the father that the patient shouldn't be able to see? Is it personal information that the advocate shouldn't be able to see? I think we'd all agree that there's a vital interest in being able to see that information.
I'm aware of a situation in which the patient alleged that he was physically assaulted by a staff member. Apparently another staff member witnessed it, was horrified by what he saw and documented it in the chart. Is that document in the chart about this incident the personal information about the alleged assailant that the advocate shouldn't be able to see? Any information that's in the patient's clinical record can potentially affect the clinical care of that patient and can affect his or her rights. Any information in that chart will be presented to the Mental Health Review Board or the Consent and Capacity Review Board. They'll look through it and they'll be influenced by what's in there in making decisions about whether the patient is competent or not, whether he or she should be able to leave the institution or not. Our view is that if it's in the patient's clinical record the patient should be able to see it and with his or her instructions the advocate should be able to see it, whether or not it fits the definition of personal information.
I'd like to turn to Bill 109, the Consent to Treatment Act. In the coalition brief we made reference to the amendment which would permit people added as rights advisers in regulation, and we acknowledge that, given the importance of having a fast response time and being able to respond province-wide, there could be a need to deputize someone, for example, in a community legal clinic who can get to an outlying area, can get to an institution to provide rights advice on short notice. However, it's chilling to think that a person who is employed by a nursing home might be given the conflicting assignment to also give unbiased rights advice to a resident of that nursing home.
I noted that some people making submissions from the perspective of facility operators and providers have expressed their own concern about this section because they worry that they're going to be obliged to do this and will have to foot the bill for these services. The amendment proposed by the coalition would allay their fears and ours. It would say that the person prescribed to be a rights adviser has to be someone who does not provide and is not employed by an organization which provides housing, vocational or health care services to vulnerable people. So we can satisfy the concerns of many different groups by putting in this amendment.
Finally, I'd like to speak about the coalition's suggested modification of the definition of treatment. I think this is an issue that's been hit on as well by provider groups as causing some concern. We are sympathetic to the concern that the Consent to Treatment Act and the due process that it provides be appropriate to the degree of invasiveness of the proposed treatment. No one wants to swat a fly with a cannon, for example. We don't see a need for the Consent to Treatment Act even to apply to such non-invasive interventions as changing a bandage or rotating someone in bed or doing health education for health care consumers.
The only intervention that we can envision that we'd like the Consent to Treatment Act to apply to and is not a controlled act as defined in the Regulated Health Professions Act is behaviour modification. You've just had an articulate expression of some of the abuses of behaviour modification programs, so I hope you will understand why we think that should be subjected to the due process that the Consent to Treatment Act provides.
At the boldface on page 4 we say that we recommend that section 10 be amended to require that rights advice be given whenever a health care provider determines a person aged 12 or over to be incompetent with respect to a treatment, and that's treatment as modified to be controlled acts or behaviour modification, to be administered within a health facility.
I heard some questions asked of other presenters about what the significance is of distinguishing between treatment administered within a health facility and treatment administered within other settings. First, once the regulations establish what is a health care facility and what isn't -- we don't know now because it's going to be put in regulation -- that will be readily understood. I think it will be easy to distinguish between a corner doctor's office and a public hospital, for example. So I have no doubt that health care providers will understand what is considered an institution and what isn't.
I think it is a meaningful distinction, because people who are in institutional settings are at greater risk of loss of autonomy. Their ability to make decisions is compromised in those situations. There is an inherent coercion in institutional settings, even in the most benign ones with the most well-meaning health care providers. You're told when to rise, when to sleep, what to wear, what to eat, with whom to associate. It's a very controlling environment and it's a difficult environment for people, particularly people who are not accustomed to being assertive, to assert themselves and say: "Excuse me, Doctor. I know you want to give me that treatment right now, but I'd really like you to hold off until I see a rights adviser." It's our position that people in institutional settings should not be required to be that assertive. If it is a controlled act to be administered in an institutional setting, they should automatically have a visit from a rights adviser.
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The distinction between instititutional and community settings does have some precedent, I would say. In the Mental Health Act, if a person is admitted as an inpatient, part III says that the attending physician "shall" assess him or her for financial competence. However, if they're an outpatient it says they "may" assess them for financial competence. There is a distinction made, depending on whether they are an inpatient or an outpatient.
I note in the way the Mental Health Act deals with psychosurgery -- the lobotomy is a common example of it and thankfully it has fairly fallen into disuse, but it hasn't yet been banned -- the section says -- it's now renumbered as subsection 49(4) -- that the consent to psychiatric and other related medical treatment of an involuntary patient or a substitute of a patient does not include and shall not be deemed to include psychosurgery.
Why won't they let an involuntary patient consent to psychosurgery? They'll let an involuntary patient consent to ECT, consent to neuroleptics. It's because it's such an invasive treatment and so irreversible and so dramatic that we doubt whether an involuntary patient can truly give a voluntary consent. This is an acknowledgement that a coercive setting and being detained in an institutional setting can really compromise voluntariness.
I'll pause there for questions.
Mrs Sullivan: Once again I'm going to disagree with you on your view of the proposed amendments to section 10, which would distinguish between controlled acts on the basis of the location in which they are going to take place. I suggest to you that a pelvic examination, by example, is just as intrusive if it occurs and the consent for it to occur is requested in the physician's office, in a home setting or in a hospital.
I think there are many other controlled acts which are in those categories and I think your suggestions with respect to rights advice on controlled acts is a good one, but I don't think it should be limited by location of either where the recommendation by the physician has been made or where it's going to be carried out. I think that's ludicrous. It gives a standard of rights to people not based on the medical act that's going to occur but on the basis of where either the advice came from or where the treatment will take place.
I am interested in your proposals. I believe the medical association and the college are both looking at the proposals for bringing section 10 together so that the controlled act becomes the determination for consent and for the springing of rights advice. I think that's a very useful suggestion and we certainly made note of it when it was part of the coalition's presentation.
Apart from that, I wanted to ask you: What do you think will happen to your office after these bills are put into place? We now have a situation where there are rights advisers dealing with consent to treatment rather than advocates. We assume the role is different. Will the role of your office now become the rights of the rights adviser or will it continue to be the more extensive role of advocate that you now play?
Mr Giuffrida: I'd like to touch upon both of your comments. I'll start with the second one. Our clients now are entitled to the services of an advocate who has access to their clinical records with their consent and can mediate and negotiate their concerns and make referrals. If our clients' legal status is changed, under the Mental Health Act they have access to a rights adviser who visits them to tell them their rights and assist them to apply to the review board if they so choose.
In any reorganization of these services we believe our clients should continue to have access to both. As these bills have been proposed to be amended by the government, the distinction between advocate and rights adviser has been introduced. During this round of amendments, the role of rights adviser is now introduced. That creates the potential to recognize the distinction that has existed in our program for some years between the more narrow function of a rights adviser -- very important, but a narrow, circumscribed one -- to visit a person without invitation, upon receiving a notice, and explain about the actual or proposed change in his or her legal status, and the full-service role of an advocate. I am fully confident that the commission will understand the need for inpatients in the provincial psychiatric hospitals to continue to have the services of both. It remains to be seen what structural changes will occur when our program moves under the commission.
To turn to your comments about the distinction between inpatient and outpatient settings, I know the coalition has tried to respond to these bills in a spirit of compromise and tried to be realistic about limited resources. It might make it problematic to provide a rights adviser, for example, when a developmentally handicapped young man presents at a dentist's office with his mother and needs a filling. He wants it and she wants to consent to it and the dentist wants to give it. With the previous draft, since that's a controlled act, "No, you'll have to come back in six weeks after you see a rights adviser." That didn't appeal to many people, so we thought, "Okay, in that situation, how about you just give the person the notice?"
However, once we say that for that kind of controlled act we're content to give the person the notice and tell him of his right to have a rights adviser, that doesn't mean that for every controlled act in every setting we think that just a written notice is enough. For more invasive treatments, for psychiatric treatment in psychiatric settings, we think there should be an automatic rights adviser visit. So where do you cut it? We said, "We've got to cut it between institutional settings and non-institutional settings." If that distinction isn't going to be made, I'd suggest that everybody gets an automatic rights adviser visit because I wouldn't want to see someone scheduled for an amputation in a public hospital not get an automatic one. So either we make a distinction or we give it for everybody.
Mrs Sullivan: I've used the example of the pelvic examination. I suggest to you that perhaps with a consultative process in the course of drafting the regulations, determinations could be made that the finger that requires stitching as a result of a cut on a pop bottle is not going to require the triggering of rights advice for an incapable person, whereas the pelvic examination certainly should.
Mr Giuffrida: I'm sympathetic to the distinction you're trying to make, but if I understand you correctly, you're making a distinction within the various categories of controlled acts.
Mrs Sullivan: I think that's the way the act is going, and I think your recommendations take it further that way.
Mr Giuffrida: We still deal with controlled acts as a single category. You're proposing a refinement that would even put controlled acts on a continuum and say some controlled acts are still fairly non-invasive, like a filling or a stitch, and some are more invasive, like a pelvic exam or an amputation. Of course, that's true. Every distinction you introduce adds levels of complexity and adds greater difficulty in interpreting and applying it, so we'd be asking practitioners to not only know what's a controlled act and what's not, but to know where on the continuum this controlled act is. So there's a cost to be paid for introducing those kinds of subtleties.
Mr Jim Wilson: David, I just wondered if you could clarify for me once again -- you and Mrs Sullivan were chatting about it -- the difference between a rights adviser and the advocate as you have seen it.
Mr Giuffrida: The contact between the rights adviser and the client is not typically initiated by the client, for example. Under the Mental Health Act, if a client's legal status has changed in some way, he is either placed on a certificate of involuntary admission or is determined to be incompetent in one or more ways: finances, treatment, access to his files. The doctor completes that determination and is meant to give a written notice to the patient but also a notice that reaches the rights adviser, who then visits that person to explain to them the implications of what the doctor has done and what options are open to them. They don't wait to be asked by the patient; they proactively go out to visit the patient. If the patient says, "Thank you for telling me this information. I also have a concern that I don't like a certain drug" or "I don't like my roommate. Could you help advocate for me to the nursing station about that issue?" the rights adviser will say, "That's beyond the scope of my job, but I can make a referral to the patient advocate for that purpose."
Mr Jim Wilson: And that model is carried right through the new acts? The distinction is clear in your mind?
Mr Giuffrida: The minimal vocabulary is there: "rights adviser" and "advocate." It's not elaborated in the way I've just described to you.
Mr Jim Wilson: I guess that's why it's a bit confusing for me. In round 2, after the amendments, we now have rights advisers in Bill 109. My first reading of the amendments was that we were really playing semantics here, that the government can now say, "We're not hiring 250 advocates; we're hiring 100 rights advisers and 150 advocates." Do you really think a layperson's going to know the difference?
Mr Giuffrida: I support the introduction of the term "rights adviser" because it gives the commission the latitude to define two different categories and could have two different degrees of training, because the rights adviser function is a narrower one; frankly, two different salary levels as well, which has important economic implications in tight times. I think giving them the opportunity in the implementation to flesh out that distinction is important.
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Mr Jim Wilson: But do you not get doubling up of duties with the same patient, for instance? When the patient does express, as in your own example, a need for some advocacy and the rights advisers step back and say, "No, I'll have to call in so and so."
Mr Giuffrida: In those cases it does, but it is only some fraction of patients who receive rights advice who ask their rights adviser to make a referral to the advocate.
Mr Jim Wilson: That's if they know it. Say you don't really know the system and you're chatting with someone -- I would assume it's my advocate or someone I'm supposed to tell my wishes to. How many people are actually going to sit down and say, "This is my rights adviser and I can only go this far with this person, and then I might need someone else after that."
Mr Giuffrida: I agree with you that some of our clients are not equally clear about the distinction between advocate and rights adviser.
Mr Jim Wilson: Some MPPs aren't either.
Mr Giuffrida: But in neither case does it impair the delivery of our services. If they don't understand, the advocate or rights adviser can help them understand.
I think to have an advocate who is employed and trained and has an appropriate salary to do full-service advocacy, to do systemic advocacy, to negotiate with the administrator and the front-line nursing staff, to have that person doing the narrow rights advice function might be devoting more resources to that narrow job than it requires, and it would be more efficient to have someone possibly doing just rights advice.
The Chair: Mr Wessenger -- Mr Winninger.
Mr Winninger: I can understand your confusion, Mr Chair.
A couple of points I wanted to make have already been covered by Ms Sullivan, but there are a couple of points I wanted to raise with you here today, and one is access to clinical records.
There is an exclusion built into the disclosure provision of the Mental Health Act, as I recall, where there's a potential for harm to the patient or to other members of the public. I always had some problems with that exclusion. However, I can see some value in retaining some restrictions on blanket disclosure of clinical information, simply because there may be names of informants in those clinical records whose lives could be prejudiced. It may be that the information they gave was totally fallacious, but their lives may be prejudiced if that information is disclosed to a patient. Maybe I'll give you a chance to respond to that, and then I have one other.
Mr Giuffrida: If their information is fallacious, I hope they are prejudiced. I'm aware of a case that came to the attention of our office recently, where one spouse allegedly gave just gross misinformation to health care providers for the purpose of getting the other spouse locked up in hospital and later acknowledged, "Gee, I was under a lot of pressure because of the separation." I'd like that person to experience a lot of prejudice.
Sometimes informants are mistaken. Almost always, when a client has access to a record and looks at what has been recorded about some controversial interaction, some dispute, they have a different take on it than the other witnesses have.
Mr Winninger: Let's say the information was accurate, it wasn't fallacious, but names were given of informants whose lives could be threatened by full disclosure. How do you deal with that?
Mr Giuffrida: The point I come back to is that this information is used to make serious decisions affecting the life of the patient. The Mental Health Act is one of the few statutes we have outside of the Criminal Code and the Provincial Offences Act that allows people to be locked up, and it allows people to be locked up who have committed no crime and allows them to be locked up based on information given by third parties. We haven't reached the point where we allow our complainants to testify with hoods in our criminal courts; you have a right to face your accusers. In any system that's going to take away your liberty, you should have the right to know who is making what allegations about you.
Mr Winninger: I don't disagree with you. I was just looking for reassurance from you.
The other point involved the role of the rights adviser, and I wish Mr Wilson were still here for this discussion. There are situations, such as in the public hospitals, where lawyers are called in to give rights advice, and it would be entirely appropriate for a lawyer to come in and say: "You have the right to a hearing, you have the right to a lawyer, you have the right to apply for legal aid," this kind of basic information that a patient needs.
Now, the patient may say, "I've heard what you've got to say, but I don't want a lawyer, I don't want a hearing, I don't want to apply for legal aid." The patient may say: "I don't want to see you at all. I don't even know who sent you here, so why should I see you?" But you need that kind of initial intervention to at least assure yourself that the patient knows his or her rights and could act on them if necessary, but you don't need full-blown advocacy.
So what I'm suggesting is that there is an ongoing role for the rights adviser and there is an ongoing role for the advocate, but the two don't necessarily have to be confused in all cases or overlap or be duplicated.
Mr Giuffrida: We think the distinction has worked out very effectively in our program.
The Chair: Ms Sullivan for clarification?
Mrs Sullivan: Yes, Mr Chairman. I'm going to ask that the clerk follow up with the legal counsel to the Minister of Health with respect to Bill 109, subsections 10(2) and (3). In reading this and in discussions with ministry officials, particularly subsection 10(3):
"If, in a place other than a psychiatric facility or prescribed health facility, a health practitioner finds that a person who is twelve years of age or more is incapable with respect to a treatment that is a controlled act within the meaning of subsection 27(2) of the Regulated Health Professions Act, 1991, other than a prescribed controlled act, the health practitioner shall ensure" etc, etc, etc.
This section contemplates a hierarchy of controlled acts, and we would like confirmation of how that hierarchy is going to be developed and, because the word "prescribed" health facility is included, what in fact that means. There's clearly a different interpretation of that section of the act from this presenter than has been the understanding from other presenters today.
I've raised this issue on several occasions. Believing that, the presenters before us understood that it meant a hierarchy of controlled acts. I think the Ministry of Health has been perhaps less than forthcoming with the committee and the people with whom it's been in consultation if that is not the understanding, and I think we all deserve a full clarification.
The other part of that clarification has to be, is a prescribed health facility, by example, an acute care hospital? Is it a dentist's office? Is it a psychiatric institution? What else is going to be left out or put in, quite arbitrarily and without public consultation? We should have had that information in an open way long before this.
Mr Giuffrida: If I could just respond briefly, you're certainly correct that that subsection contemplates certain acts, some subset of controlled acts that are prescribed controlled acts, being carved out on it. It's still not a full continuum.
Mrs Sullivan: That's right. Who knows? We don't know that.
Mr Giuffrida: It seems to contemplate that either it's a controlled act or it's prescribed out of that category, kind of a two-point scale, two categories, perhaps not a continuum.
The Chair: Thank you, Mr Giuffrida. On behalf of this committee I'd like to thank you for taking the time out this afternoon and giving us your presentation. Thank you.
Mr Giuffrida: Thank you.
ONTARIO DENTAL ASSOCIATION
The Chair: I'd like to call forward our next presenters, from the Ontario Dental Association. Good afternoon. Just a reminder that you'll be allowed up to a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you're comfortable, could you please identify yourself for the record and then proceed.
Dr Peter Fendrich: I'm Peter Fendrich, president of the Ontario Dental Association. With me today is our director of government relations, Frank Bevilacqua. Let me say that we're pleased to have this opportunity to speak to the committee on Bill 109, the Consent to Treatment Act.
Like many other organizations, we outlined our serious concern with the original package of bills on consent to treatment during the committee hearings in March of this year. We're pleased to see that so many of the revisions in the current bills attempt to overcome the problems that had been highlighted during those hearings.
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As health care practitioners, dentists support the idea of informed consent. In very simple terms, we know that practitioners have a responsibility to share information about diagnoses, treatment options, risks and outcomes with their patients. As you know, this information-sharing process is a two-way exchange. The patient must consider all available information when deciding to accept or refuse health services.
We recognize that this process presumes a certain level of patient competence. As we understand the background of the bills, the Consent to Treatment Act is intended to protect those patients who are not capable of making these judgements.
I must say that we are concerned that there is an underlying presumption that dentists and other practitioners would not be able to act appropriately without this legislation. In fact, we're here today to ensure that the mechanisms outlined in Bill 109, the Consent to Treatment Act, do not become so complicated that they leave the vulnerable patient at even greater risk.
In our view, this is exactly what is wrong with this bill. The process has become so complex that patients may not receive the treatment they require in a timely fashion. In fact, the process is so difficult to understand that it may not be applied evenly by practitioners across the province, yet the bill is supposed to ensure that the vulnerable members of our society are treated in a like manner by all regulated health professionals.
One of our concerns relates to the protection of the practitioner who relies on and follows the process outlined in Bill 109. We expect that the amendments were intended to simplify the process so that only the practitioner prescribing or proposing the treatment will be responsible for initiating the consent process where a rights adviser will be involved.
We know that practitioners will welcome anything that would make the process less cumbersome. However, we're worried about the liabilities that might accrue to the treating practitioner who relies on the prescribing practitioner to complete the entire consent process. At the same time, there is some question about what aspects of the consent process the prescribing practitioner will be held accountable for.
First, we need to be absolutely clear about who the prescribing or proposing practitioner is for the purpose of this legislation. For instance, if I recommend periodontal care for a patient and refer that patient to a periodontist, would I be considered the prescribing practitioner? I certainly don't feel comfortable in taking responsibility for explaining all of the risks and benefits associated with a specific treatment plan that will be detailed by the periodontist.
Again, I think this is primarily a point of clarification. We just need to understand exactly what is meant by the term "a health practitioner proposes a treatment." Is the referring practitioner always the proposer?
We certainly do not wish to see the consent and treatment process become more complicated; however, we need to understand the potential ramifications for any one practitioner linked with providing treatment for a vulnerable patient.
We would like to take some time to explore what sort of treatment services will be covered by this legislation.
The first issue relates to when you have to contact the rights adviser. This question is central to the implementation of the Consent to Treatment Act. As a family dentist, I'm going to have to follow these rules on a daily basis, yet I simply do not understand the rules.
For instance, what are the prescribed controlled acts? In section 10, the bill indicates that a rights adviser must be notified where "the treatment is a controlled act within the meaning of subsection 27(2) of the Regulated Health Professions Act, 1991, other than a prescribed controlled act, and the person objects to the treatment or requests a meeting with a rights adviser."
Under the RHPA, some 13 acts were set out as controlled services. As we understand it, these procedures were controlled because of the potential risk of harm to the patient. If any of these potential harmful services are to be exempt from some aspects of the bill, we recommend that you re-evaluate the need to call in a rights adviser for any services.
I will just continue on this point of contacting a rights adviser. As I understand it, I will have to notify the rights adviser where the patient objects to the treatment. We would like to be very clear on what constitutes objection. The patient's objection is very clear where the patient says, "I do not want this treatment." On the other hand, are we to assume that an uncooperative patient is voicing his or her objection to treatment?
Is the adolescent who has a fear of needles also objecting to treatment? Are we going to place the 12-year-old, who does not understand either the benefits of the treatment or the risks of not having care, in control of the entire treatment process? As we reported to the committee previously, the ODA continues to support the parents' participation in the decision-making process wherever possible.
I'm sure you will understand that we do not want to sound unreasonable when we ask for clarification on what constitutes objection. As we read this bill, consent to treatment may be expressed or implied. If we're to follow the legislation, the rules must be very clear for everyone. Practitioners must understand what will constitute objection under this legislation.
As we stated in our opening comments, our primary concern is protection for the incapable patient. It is absolutely essential that vulnerable patients do not face treatment delays simply because they are confused about the need for care.
We're pleased that Bill 109 does not envision the need to contact a rights adviser where the incapable person agrees with the treatment plan. We wonder why the practitioner's judgement is questioned only in instances where the incapable patient objects to care. We feel very strongly that vulnerable patients are going to suffer unreasonable treatment delays because of this legislation.
Under the terms of this bill, I will not be able to provide care for a vulnerable patient who has objected to the treatment plan until: the rights adviser notifies me that they have provided an explanation to the patient and the patient does not wish to make an application to the board; or the rights adviser notifies me that the patient refused to meet with the adviser; or seven days have passed since I notified the adviser and no application has been made to the board; or the board gives a decision in the matter and the appeal period lapses without an appeal being commenced or an appeal of the board's decision is disposed of.
I'm a practising dentist. How are my colleagues and I going to track this process? I'm very much afraid that our vulnerable patients who have been sent home to wait to hear from the rights adviser will fall between the cracks. Further, it is not clear to me what happens when the incapable patient refuses to meet with the rights adviser.
We know that this patient has already objected to treatment. Am I to deny needed care simply because the patient is incapable of making a decision, or am I able to contact a substitute decision-maker once I'm notified of the refusal to meet with the rights adviser?
Under the revised bill, the rights adviser is only required to meet promptly with the person who has been found incapable. While we are pleased that practitioners will not have to coordinate private meetings between the patient and the adviser in our offices, the opportunity for continuing patient care in a timely manner is sure to be lost.
Where an appropriate substitute decision-maker is available and willing to make decisions on behalf of the vulnerable patient, we believe that treatment decisions should be made and care should not be delayed.
We would point out that section 23.1 envisions certain instances where the health practitioner would be expected to override the decision of a substitute decision-maker. It is impossible for health professionals to judge whether or not the person refusing consent to treatment on the patient's behalf complied with the principles of the process outlined in section 14. However, we believe that we should be encouraged to rely on the available substitute decision-maker without calling in a rights adviser.
We recognize that section 24 would relieve the practitioner of any liability for failure to treat when the incapable patient has refused care and the consent process has been followed. Quite frankly, we would prefer to see a more proactive and positive process that would ensure the provision of timely care to our vulnerable patients.
Finally, we would like to ask another question about the age of consent. Will it be necessary to receive permission from the 12- or 13-year-old to share their health information with their parents? We certainly do not envision that adolescents would usually refuse this sharing of information, but it is a point of concern that we would like clarified.
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At the same time, we would just note that parents normally would authorize payment for services provided for their children and the billing process would identify the services performed. Again, we don't see these as a major problem, but we would like to hear your thoughts on this.
In summary, we are pleased to see that there has been some progress in Bill 109, but we do continue to worry about the complexities of the Consent to Treatment Act.
We are also extremely concerned about the parts of the process which are not included in the bill. For example, how do we contact the rights adviser? Will our practitioners and patients in northern or remote communities have timely access to an adviser?
Confusion about the process will lead to uneven application of the legislation. In our view, the inability to have the patient meet with the rights adviser in a timely manner may add inappropriate hurdles to needed care for the very patients we are attempting to protect.
Ontario dentists wish to ensure that this legislation will work in favour of our vulnerable patients. We want to ensure that resources are not misplaced in developing unnecessary and complicated administrative procedures. Our limited health resources should go towards patient care.
Let me assure you that the ODA is committed to working with you to achieve this goal.
Once again I would like to thank you for the opportunity to speak to Bill 109. We would be pleased to explore some of the issues we have raised with the members of the committee.
The Chair: Questions or comments?
Mr Alvin Curling (Scarborough North): I am actually forced to comment on this because all this morning I was at the dentist with about eight needles stuck in my throat and all over. I'm frozen. I just became unfrozen now. That's why I'm able to speak.
Mr Owens: That's a miracle.
Mr Cordiano: That doesn't apply to his brain.
Mr Owens: Are there neurological implications?
Mr Curling: So you can see one side of my mouth moving and the other --
Mr Owens: Typical politician.
Mr Cordiano: Speaking from both sides of his mouth.
Mr Curling: It's not the fact that I'm holding back the frozen part.
I think the presentation was well done and many of the concerns you have raised here have been raised by many people who have made their presentations here. If a 12- or 13-year-old was watching the dentist as he tried to do the cleaning of my teeth, I'm sure if he or she were next, he or she would have said no. But if I were able to really explain to the young person that having those teeth cleaned is important to one's health, he would have a difficult time deciding whether he should take the needle to have them cleaned, not knowing the consequences later on.
I am speaking in respect to the age group in which they can make a decision, a 12- or 14-year-old, and your concern whether the neglect of treatment could cause severe problems later on, so people have come forward here and raised that concern. I hope the government is listening, because it's important.
I have also, over the years, admired the dentists especially who have brought in the family to make decisions and make it a family process in having teeth cleaned and being looked after properly.
I'm just speaking from the point of view that I worry a bit whether this will distract and discourage family participation if a young individual of 14 or so would say no because, "I just saw dad going through this and I have to get someone to make this decision for me," after the negotiations went on for months to get that child to the dentist.
It may sound rather light-hearted, but I am as concerned as you are on this. I think most of the dentists should be aware of what is happening here, that you make it known to the government. Those are my comments.
Mrs Sullivan: I'm interested in the remarks you've made to the committee with respect to the health practitioner and defining the health practitioner who proposes the treatment as being required to obtain the consent. I think that's an issue that moves into several areas of health practice, and in the dental area it may include not only a patient whom you have referred to another practitioner but a practitioner working under your orders in your office, say, doing the cleaning of teeth or whatever.
But in a physician's office the question of, say, the nurse performing duties under the direction of a doctor also fits into that exact same category. Is the nurse also required to obtain consents as the process moves on and are the activities of the nurse or another practitioner equivalently part of the original course of treatment or do they become a new course of treatment? I think that's something there is reason to clarify, not only in the regs but in the legislation itself.
I also note that you've raised the very issue I raised in the last intervention about the hierarchy of controlled acts; your conclusion is that if there is going to be a hierarchy, in fact you don't need any rights advice at all. That's an interesting proposal and I think one we'll want to explore further with the Ministry of Health when they come back.
Do you deal much with patients who are in your offices under the aegis and protection of the children's aid society, and are you aware of the concerns they have raised with respect to these bills and about their ability to provide consent if a youth under their care refuses treatment?
Dr Fendrich: Two questions. In answer to your question about whether we treat children who are under the care of the children's aid society, yes, and I would think that also our specialists in paediatric dentistry do as well. In terms of my awareness of the concerns they have raised on that issue, I'm not clear as to the issues they have raised.
Mrs Sullivan: Their position is that Bill 109 interferes with their responsibilities under the Child and Family Services Act in providing consent and making the treatment decisions they are required to make for children in their care because the parents of the child have not been carrying out those duties as parents.
One of the issues the Children's Aid Society of Metropolitan Toronto and the Ontario society brought to the attention of the committee was the area of dental care where, if nutrition isn't being appropriated provided by the family, it frequently shows in the mouth with additional caries and loose teeth and so on. The requirement of providing consent and ensuring that the treatment is delivered, the children's aid society believes, is an important part of its mandate. I wondered if you wanted to comment on that aspect.
Dr Fendrich: The concern we would clearly have is that the creation of those kinds of delays -- when you see a patient who is dentally compromised in that manner, to then subject the patient to a significant further delay I think would make their dental treatment that much more complex. In many instances, when you see a patient and you can do some conservative treatment, by delaying that conservative treatment it then changes to become not so conservative, and I just can't see how that would be in a patient's best interests when that situation arises.
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Mr Jim Wilson: Thanks to the ODA again today for a very thoughtful presentation.
I want to turn to page 7, because I believe you are sincere when you say that you really just want to understand how dentists fit into Bill 109. Most important, you want to understand really what constitutes an objection; I think it's the crux of your written brief.
Through you, Mr Chairman, perhaps we could try to get some answers here today. Given that we have no Minister of Health or parliamentary assistant of Health, perhaps the policy adviser who's here might give us an opinion under Bill 109 of what does constitute an objection in the dentist's chair.
Ms Auksi: I can attempt it. That obviously is something a practitioner must determine. I don't know how one could really determine for a practitioner when a person is refusing. If they're in doubt, if they have suspicions that a person is not consenting, then it seems to me they would need to inquire further. You can't really proceed with a consent unless you're satisfied that the person consents.
Mr Jim Wilson: Inquire of whom, or what, further?
Ms Auksi: Of the patient.
Mr Jim Wilson: What if the dentist, as you said, has really no conclusion whether there's been consent or not? We've heard all kinds of testimony, both in the last round and this round, about young teenagers objecting and just being obstinate to various types of treatment. What type of process is envisioned here? If the dentist is having a problem, what type of help is the government going to give the professional?
Ms Auksi: This is the case of whether a rights adviser should --
Mr Jim Wilson: Is there going to be, for people in my riding, a 1-800 line where the professional can phone and get some advice?
Ms Auksi: I guess we would welcome suggestions from the practitioners if they feel that they're not able to decide these things as they normally would. It seems to me it would be similar to how you would judge whether a mentally capable person had consented. You have to somehow be confident that you have a consent. If you have someone who you feel is incapable, the kinds of communication they would convey to show that they're not in agreement -- I'm sorry. I guess I don't quite understand.
If they're resisting the treatment or if they're pulling away from it, and you've said they're incapable, the whole point of rights information is that they would have a right to challenge the finding of incapacity. That would be their one ability to perhaps not get the treatment: if a review showed them in fact to be capable. Their objection would be something that would then mean they would get further information about being able to dispute the finding of incapacity.
Mr Jim Wilson: It gets difficult when you're dealing with expressed and/or implied consent. I think that's where I have difficulty going through some scenarios in my mind. Do the presenters have any comments on that?
Dr Fendrich: I'll give you an example, if I may. I'd be interested to know how this might apply to my own situation. I have two young daughters. I dare say that when I take them to the paediatrician to get their checkup, and I know they require periodically to be vaccinated, neither of them is too keen about getting a needle. If they raise an objection to that, how does that play itself out under this proposed legislation? It's clearly in their best interests to have a vaccination done but they're not keen to get a needle. What does the paediatrician do? What do I do as a parent? How does that play itself out? That's a scenario that we see in our dental offices not infrequently as well.
Ms Auksi: Bearing in mind of course that under the age of 12, under the amended version of the bill, there would be no rights advice.
Mr Jim Wilson: But over the age of 12 --
Ms Auksi: Twelve and up, yes there would be.
Mr Jim Wilson: Automatic rights advice in all cases.
Ms Auksi: The minute that someone objects I suppose one can try to allay their concerns. If they stop having the concern --
Mr Jim Wilson: What if you're accused of coercion?
Ms Auksi: I guess an objection that doesn't abate is a standing objection. I don't mean to be facetious, but there is certainly an element of judgement here.
I'd just like to comment on the expressed versus implied consent. There may be some need for clarification still there in the wording of that in the draft, because it certainly was not intended that implied consent could mean an absence of information, an absence of voluntariness. It is simply to mean that it doesn't have to be in writing or someone doesn't have to verbally actually say, "I consent to procedure X." It still requires that the information have been given, that the practitioner be satisfied that the information has been understood and that the person has in fact applied their mind to it and is consenting voluntarily and so forth. The requirements of a consent have to be in place; it's just that the manner of conveying the consent doesn't have to be in those exact words. There is an element of judgement there.
Mr Jim Wilson: I didn't want to be rude in my questioning, but I wanted to do this little exercise to highlight exactly what the dentists and the ODA have said here today, that there does need to be further clarification of this section.
Mr Owens: I just wanted to follow up on that issue around implied consent, especially for the -- if the witnesses would like to respond.
Dr Fendrich: I'm sorry. I was consulting with Mr Bevilacqua while you were speaking. I didn't hear your question.
Mr Owens: I see. As to the implied consent section, is there not an implied consent, especially in terms of dental work, that a person makes an appointment for the twice-yearly checkup and that implies that there's going to be some digging, some picking and some fluoridation etc. Does that mean with this section now, if I decide at some point during the treatment that no, I don't want fluoride applied or no, I don't want the digging as opposed to the picking, that the rights advice section is going to kick in and the dentist has to stop treatment?
Ms Auksi: In rights advice, of course we're talking about someone who is found mentally incapable, so someone making a dental appointment for himself would be unlikely to be mentally incapable of making a treatment decision. I suppose it's vaguely possible.
Mr Owens: On Thursday; maybe on Friday they're not. Who knows?
Ms Auksi: In fairness, in terms of someone who is mentally capable, the act of going to a practitioner's office is a part of an acknowledgement that you have a treatment need, you want it attended to; there's information given about what is wrong, what can be done about it. There is an element where you don't have to really spell out your agreement to what is happening as long as you've been given the necessary information. You can withdraw your consent, of course, because if you decide that something is being done or that something is being proposed that you hadn't envisaged or that you disagree with, you don't have to go through with it to the bitter end because you, somewhere way back when, said yes, you'd like that.
Mr Owens: Then in terms of the advice that you would give or the ministry would give to the Ontario Dental Association in where you stop, where do you draw the line and what is reasonably acceptable under implied consent versus what you would ask for explicit consent for?
Ms Auksi: I'd really like to make sure that it's understood that implied consent is not something that is being used to deal with the issue of mental incapacity. Someone who's mentally incapable can't imply a consent, because they can't consent. I hope I didn't confuse the issue by drawing that in because it arose at the same time as the issue of implied versus express. When you're talking about an incapable person and a substitute consent made on their behalf, then basically the substitute has to express a consent on that person's behalf or at least by some action to show that they're consenting after they've received the information.
I'm sorry. Perhaps I don't understand your question.
Mr Owens: Maybe I don't understand the concerns of the dental association. I guess their concern is that they have somebody who they want to treat and no matter what the treatment is, if the person refuses, competent or not or capable or not, the rights advice process is going to kick in. Is that what I'm hearing?
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Dr Fendrich: I think I have an appreciation for the question that you're raising. If I can put it in a context, I can think of many instances where a patient presents and the treatment plan and different phases of the treatment plan may spread over multiple appointments. Say the patient presents for the first two appointments and the consent, implied or otherwise, is there. Say a particular treatment plan may spread out over six or seven appointments. Does the whole consent process have to take place each time, or when one explains the initial overall treatment plan is consent agreed upon there?
I think Mr Owens is giving a scenario where patient X has a change of mind or whatever, and does that then require a practitioner to go through a consent process at every patient interaction.
Ms Auksi: If you had an incapable patient and there was a course of treatment that was spread out over a period of time, after the finding of incapacity is made initially, after it's established either that they are or aren't going to dispute the finding of incapacity -- and say they don't, which would probably be by far the most usual case -- then the treatment could proceed on the substitute consent and that would cover the remaining parts of that course of treatment.
It's not the administration of the treatment each time that triggers the need for the process, but rather the consent to that series of interventions that may be seen as a whole. In fact, in some cases -- the nursing home people, for example -- it is pointed out that they're dealing with a wide variety of treatments that are going to be ongoing for people with multiple kinds of treatment needs. It doesn't mean they have to deal with them all discretely and go through the process many different times. They can say, "This person is incapable for all the treatments he's going to need." They would get the rights advice the one time dealing with it all, and unless something new and different arises in the course of that person's stay in the facility, then they really would be able to obtain consent for ongoing treatment based on a consent at the time.
In the case of a mentally capable person, of course they are free to withdraw their consent. In the case of an incapable person, the substitute may withdraw the consent; he may decide, "This is not doing the person the good I thought it would."
Dr Fendrich: I appreciate your clarification on that. That certainly wasn't apparent or clear to us from reading it.
Ms Auksi: We thought we had clarified that in some of the wording around that "a treatment" includes "a course of treatment" or "a plan of treatment." But it is something that bears emphasizing.
Ms Zanana L. Akande (St Andrew-St Patrick): I appreciate the presentation especially, and I recognize the importance of it in spite of the levity.
I'm interested, though, in your experience as a dentist. It seems to me that we've formulated a situation here, some of the examples you give, where consent and who is capable of giving it and how it is given seems common. Is a reluctance to endure pain inferred by many dentists as a withdrawing of consent to have treatment?
Dr Fendrich: Are you asking the question as to how the legislation would apply to that, or how we deal with that at the present time?
Ms Akande: Yes, at present. Very often children, 12-year-olds, 13-year-olds will cringe and shy away and do all kinds of things, even some of the things Mr Curling was referring to. Is a reluctance to endure pain at present inferred as a lack of consent to have treatment?
Dr Fendrich: Obviously we can't treat an uncooperative patient. We don't treat patients against their will. A reluctance to experience pain would trigger us to work with the patient to establish a rapport that will allow them to be more receptive to whatever treatment needs they require.
Ms Akande: And that is what most commonly happens in those situations.
Dr Fendrich: Yes.
Ms Akande: Is there anything in this legislation which would allow you to believe that would not be your course of action in the future?
Dr Fendrich: Yes.
Ms Akande: And that is the way it is written.
Dr Fendrich: That's our concern: Does that kind of objection to perceive pain constitute a withdrawal of consent?
Ms Akande: Certainly it wasn't the intention when the legislation was written.
Dr Fendrich: That's one of the points we would hope can be clarified.
Ms Akande: Because I would suggest that you will probably still have many 12-year-olds and even 50-year-olds who are reluctant to endure pain. We would certainly want to clarify it, if such is necessary, so that you didn't see that as a withdrawal of consent.
The Vice-Chair: Thank you very much for that presentation.
ONTARIO SOCIETY OF PAEDIATRIC DENTISTS
The Vice-Chair: Our next witness up is the Ontario Society of Paediatric Dentists. Good afternoon. As you know, you have a half-hour for your presentation. I would appreciate it if you would leave some time during your presentation so the committee members can ask you questions. Before you begin, can you please state your names for the record. Begin any time you feel comfortable.
Dr Jack Maltz: Thank you very much. Good afternoon, ladies and gentlemen of the Legislature. Dr Andrews and myself are making this presentation on behalf of the Ontario Society of Paediatric Dentists. In reading over the revisions to Bill 109, we were impressed by the amount of work done by your committee. You obviously listened to the concerns of the presenting groups and addressed many of our concerns. However, in spite of this, there are still several areas we feel can be improved. The purpose of the bill, as we understand it, is to give patients rights and some form of protection from treatment they do not desire or deem unnecessary.
The bill, however, may do exactly the opposite. Instead of giving patients rights and choices, the bill will actually hinder and delay treatment, leading to undue suffering, more extensive treatment and drive up the cost of dental care.
Because many of these individuals lack communicative skills, they may suffer needlessly in silence. A patient with cerebral palsy or autism may not be eating well as a result of an infected tooth, yet he may not be able to communicate this problem to his or her care giver until the problem becomes acute. Thus, timely treatment is essential in these patients so that dental treatment does not deteriorate. As paediatric dentists, our areas of expertise are in child management and care for the developmentally delayed. A good portion of care for the disabled is performed by general dentists. However, when and if they run into difficulty, we are the people of last resort, so that we often deal with the most difficult cases. We basically see patients in three types of settings: (a) private offices, (b) hospitals and (c) institutions. In the private office, some of these patients are extremely functional and have no problems accommodating themselves to a dental environment. Others are a bit more difficult to handle, but the amount of dental work required is minimal. For the more severely disabled patients who require extensive dental work, a hospital setting where the patient can be safely sedated or given a general anaesthesia is advisable. The most seriously disabled patients are institutionalized, and these people may require special care even for minor procedures.
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At this time I would like to take a case and run through the procedures as we interpret them and show the problems that we perceive may occur if Bill 109 is not amended.
1. Say a 13-year-old developmentally delayed child shows up with a care giver for dental treatment.
2. If he objects to any controlled act, he can be deemed incapable by the doctor, and the doctor must notify him in writing that he is deemed incapable. The doctor must notify the rights adviser that this person is deemed incapable.
3. The rights adviser meets with the patient promptly.
4a. The doctor might wait seven days after the rights adviser meets the patient to see if the patient makes a board application to contest the doctor's assessment of incapacity. The rights adviser notifies the doctor if there is no application to the board after seven days. At this time, treatment may proceed.
4b. On the other hand, if an application has been made to the board, the board must hold a hearing within seven days and render a decision within one day of the hearing and notify the doctor in writing within two days.
At this time, if everything went smoothly, a delay of 17 days has occurred. If the patient is incapable, the doctor can proceed with treatment, with the guardian's approval, if there is no appeal. If the patient has been deemed capable, no treatment is carried out.
After the board's decision, the patient can appeal the decision in seven days, thus adding seven more days to the delay. Now 24 days have accrued, if everything went according to plan. The delay can obviously be much longer.
A patient with large caries who receives timely treatment can be easily treated with simple dental restorations. If the teeth become abscessed, dental fillings are not adequate. The person may now need multiple root canal therapy, and because these teeth have been weakened, they would have to be restored with caps. Alternately, the infected teeth would have to be extracted and a denture placed, especially if the person has a heart defect. Sixty per cent of Down syndrome patients have such defects. Many of these people do not adapt well to new dentures, and therefore eating and possibly speaking would be more difficult. If a hospitalization procedure is required for treatment, a rebooking for a general anaesthesia may add anywhere from one to six months to delay of treatment, as there is a severe shortage of these services now available.
In scenario 4b, if the patient is 16 years old the doctor can notify the public guardian and trustee if the guardians do not have proof of power of attorney. The onus is now on the doctor to track the process and find out if notification has been obtained and in which jurisdiction. We are now put in the unacceptable position of enforcement officers.
Some other problems we perceive are in the tracking process. We often receive referrals from a wide geographic jurisdiction, and as many of these referrals could be in midtreatment, we would have to know at which stage they are at in the process and also which jurisdiction has okayed the treatment. Will there be a central registry where we can get this information? Further, because of the complication, we recommend that all communications thus be in writing.
In making an application to the board, the doctor is a participant. However, Bill 109 does not specify whether he is to appear in person or whether a written report will suffice. And who will remunerate the doctor for the time and effort spent?
In the section on emergency care, we feel the word "pain" should be added to the definition as patients may not be in pain at the time of the actual dental visit, but a toothache is transitory and will recur.
Last, the patients can reapply the entire process in six months, very convenient if the patient comes in for six-month recalls.
We feel the process of the law must not be so onerous as to victimize the people it is trying to help. These areas require some amendments so that treatment is not unduly delayed. We are in accord with the intent of Bill 109 and will gladly be of any assistance to make the bill and the necessary process run as smoothly as possible. Thank you for your time.
Mrs Sullivan: You've really pointed out the practical applications of two conflicting rights: One is the right to treatment, and the other is the right to due process in terms of a capacity determination. This issue has been brought before the committee by several groups and organizations and is one we're certainly concerned about, where the best interests versus the rights are in conflict.
I think you were in the room when the ODA was presenting. At that time, I asked them about the impact on the children's aid societies for children in their care. I wonder if you'd like to add to your presentation with respect to those situations now. Would you feel, knowing a child was in a CAS's care, that you would be able to treat that child under the direction of the CAS or would you feel that under this bill you would be constrained in doing so?
Dr Maltz: I feel that under this bill we would be constrained in doing so. We would have to find a proper guardian. It would not be clear and I would feel hesitant, unless it would be an emergency situation, in dealing with the situation.
Normally, the way we do things in our office is that when a patient comes in, he or she has a checkup. We do see many children from children's aid and what we do is give them a checkup, work up a treatment plan and send it to the children's aid and ask if there's anybody else who needs to know. But under the bill the way it is drawn up right now, I don't know if we would even be able to do a treatment plan.
Mrs Sullivan: That's interesting.
I'm going to ask, as a result of those comments and other comments we've received from children's aid societies, that we ask counsel and the Ministry of Community and Social Services as well to appear before the committee and discuss some of the issues that are of some concern. We have asked for legal advice from the Ministry of Health through a fairly botched vote that was taken here the other day. I think it would be very useful to have Comsoc with us to discuss this and other issues. We know the CASs have raised, particularly, the question of dental care. I don't know what the schedule is looking like, but I think that the committee has the right and deserves that information from Comsoc.
The Chair: Just a reminder, Mrs Sullivan, that tomorrow is the last day.
Mrs Sullivan: I understand that. We can make a call anyhow.
The Chair: We can try and do that then.
Okay, we do have an opening tomorrow at 2:30, so we'll see what we can do.
Mrs Sullivan: Good.
Mr Jim Wilson: Thank you very much for your presentation. Mr Sterling and I were sort of kidding here. I think sometimes our presenters must think they are a bit crazy or something when they present us with these scenarios that at first glance don't seem plausible, but when you are familiar with legislation and you go through your scenario -- both of the two you presented -- I think you're dead on. I think you deserve a response.
I'm going to ask, Mr Chairman, whomever you deem appropriate to give the committee a response, to take the scenarios as outlined -- particularly the first one which involves the 13-year-old developmentally delayed child -- and perhaps have the ministry get back to the committee and tell us what the response is in terms of some of the concerns raised in this brief specifically. I think it's a very straightforward scenario. As I understand the legislation, I think this group has got the steps down correctly. I think if the public were aware that this is what the legislation calls for at this stage, they would find it totally unacceptable.
Secondly, I want to ask the questioners to help put things into perspective for parliamentarians. What do you do now in terms of dealing with a developmentally handicapped or mentally impaired child? You're the family dentist and you've been dealing with the child for a number of years. What happens when that child turns age 16 and under the law could consent or not consent to treatment? Is there a difference in dealing with the child you've been dealing with for many years? Do you want to explain that?
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Dr Paul Andrews: Certainly, at the present time, and we see many developmentally delayed children for a very extended period of time, one of the interesting points about paediatric dentistry is that when they become 16 they continue on seeing their paediatric dentist because there just is no where else for them to go.
As Dr Maltz indicated, we see perhaps the most difficult cases to deal with, and just because they, so-called, become adults, doesn't mean they don't require the care and don't require the expertise, and there is no other specialty out there that's available to deal with them.
As such, we continue to provide care for these individuals. Historically, we have always turned to the families for consent as to the procedures we felt were necessary for these patients. Traditionally, we would consult with them for that consent.
Under the proposed Bill 109, under subsection 11(1), for anyone who is 16 years of age who is deemed incapable, and we feel that this incapacity under subsection (2) will extend for beyond a six-month period, we are then mandatorily required to notify the public guardian and trustee.
This to my mind puts me in a very untenable situation. I've been dealing with this family for upwards of 14 to 16 years, every six months, having them consent to treatment. Now this child or this individual becomes 16 years of age, and because they have not obtained legal guardianship over the individual, I have to turn to them and say: "I'm sorry. I can no longer include you in the decision-making process as to the appropriate treatment for your child. I must mandatorily notify the public guardian and trustee's office that your child is incapable, and I must consult with that office as to the appropriate treatment for your child."
As a parent, I would be horrified if a dentist tried to tell me that I was incapable of caring for my own child or to go to the expense of hiring a lawyer and going through the process of obtaining power of attorney over my child, whom I have been caring for since birth.
Under the bill, if, as the dentist, I do not notify the public guardian and trustee of the situation, I am at risk of a $5,000 fine for each case that walks through the door.
Mr Jim Wilson: Yes, it does appear ludicrous. We'll see what we can do for you.
The Chair: Thank you, Mr Wilson. I think we can work through that one case now.
Ms Auksi: I'd just like to say that in most details it's correct, the case of the 13-year-old. There's one error I think in saying that the doctor must wait seven days after the rights adviser meets the patient to see if the patient makes a board application. It's the responsibility of the rights adviser to meet promptly with the person and then to report back to the doctor. If, however, they don't, which could occur if the meeting never took place, for example, then if after seven days they haven't heard from the rights adviser, there's a presumed okay to go ahead.
If there's no notification that there is a board hearing and there's no information that the person is making an application to the board after seven days, then they could go ahead, but they probably would have heard earlier from the rights adviser in those cases where a meeting does happen.
Dr Andrews: The big problem we have here is in the tracking of the procedure. We see the person initially. We inform them that they are incapable and that they have the right to meet with a rights adviser. We notify the rights adviser.
Then under the context of the bill, it says that the rights adviser must meet promptly. We don't know what time period that constitutes. They then meet with the rights adviser. Now there is that seven-day period in which the patient can decide to make an application to the board, and even if immediately after meeting with a rights adviser, they are content with the situation, under the context of the bill, they have that seven-day period with which to make the application to the board to contest, and so we have to wait that seven days.
Ms Auksi: Not necessarily. If there's no indication at the meeting that the person wants to make an application or the person doesn't say, "Well, let me think about it," then the rights adviser would just notify the practitioner.
I guess what I'd like to say then, in addition to that, and not by way of defending the process beyond a certain point, is the fact is that the whole hearing and appeal process is one that is available to people, but it isn't something, from experience with the Mental Health Act, that huge numbers of people actually exercise. It's a kind of safety valve for those situations where people truly have a concern, or where there are borderline calls of incapacity. Someone who is really profoundly incapable is not at all likely to take these steps, someone who is so confused that he couldn't even get his thoughts together to do it.
In a way, that's an indication of their incapacity, but this does help to ensure that in some cases that have been brought to our attention, for example where a difficulty in communicating is the problem rather than mental incapacity, it gives one a way of really checking on the fact that the person does know that he has a right to appeal the finding.
In the Mental Health Act area, the number of cases that actually go to review board hearings in a year -- I think I've mentioned this to the committee before -- out of about 50,000 admissions to psychiatric facilities -- of course there would be many cases of people being incapable to consent -- there have been in the course of a usual year about 100 hearings in the entire province.
Dr Andrews: The major problem we see with that, especially with regard to the outpatient care of the special needs patients, is that there are a number of centres -- one in particular in Mount Sinai Hospital -- that on a regular basis, twice a week, see outpatient special needs patients, mentally handicapped patients, for their dental care.
Under those circumstances, every time a patient arrived at the door and objected to having treatment performed, which occurs on a regular basis for something as simple as an examination and cleaning, under the confines of this act we have to stop and initiate the process with which to have, if they're over the age of 16, a public guardian and trustee appointed and to have a meeting with a rights adviser etc. Basically, what it would do, especially to that type of program, is that it would close it. We would be unable to operate.
Ms Auksi: Actually, perhaps someone from the Ministry of the Attorney General could speak further to that, but in the case of someone with mental incapacity who is frequently objecting to treatment and is incapable, then a far better approach would be to undertake the guardianship provisions. This could be a parent who could obtain the guardianship, and then that would mean there would be a formal assessment carried out and that would mean not having repeated rights advice because there would be a provision for that.
Dr Andrews: I certainly understand that in the long term that would be the preferential situation to have develop, but we will see 25 patients in the course of an afternoon. At the end of three weeks we will have seen hundreds of patients. If we have to ensure this process for each one of those patients, whom are we treating?
Mr Jim Wilson: The fundamental issue here, I think, is why are dentists even included in this legislation under the definition of "health practitioner"? The government often pulls out newspaper stories to justify various aspects of this legislation, that there's abuse going on with vulnerable people, but I've never read of families taking their vulnerable son or daughter to the dentist for torture sessions. I've just not read of it.
I don't know why dentists and dental hygienists are even included in this. Is there perhaps somebody who could tell me the rationale? It seems crazy that you've got to get a guardianship order to take your kid to the dentist. Have we lost our marbles totally? I feel I have after weeks of these hearings. But it's getting crazier and crazier.
Perhaps I could have a serious answer, though, from either the spokesperson for the Attorney General or one of the parliamentary assistants. Have you seriously considered or is this just blanket legislation and, for the fact that they're health care practitioners, they're rolled in with everybody else.
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The Chair: Mr Winninger, your response.
Mr Winninger: Sure, I'd be pleased to respond to that. Aside from situations where there can be a finding that this patient is in need of emergency care, and there will be those situations, there will be more marginal situations where a child appears to be incapable and you'll have to resort to section 16. So let me talk about section 16 of the Consent to Treatment Act for a moment here and go through the hierarchy.
If you look at section 16, the first person the health care practitioner can turn to in the dentist's office is a guardian, if a guardian has been appointed. I put it to you that it's unlikely a child will be seen to be incapable for the first time in the dentist's office, but that's not beyond the realm of possibility. It's quite likely that a guardian will already be involved on behalf of the child.
But let's say there is no appointed guardian and let's say there is no attorney for personal care, because it's a child we're dealing with and he or she can't execute a power of attorney anyway, and let's say there's no representative appointed by the board under section 27 to consent, and let's say the child is quite unlikely to be married.
Once you get past the incapable person's child, the next person the dentist turns to is the incapable person's parent, or if the incapable person is less than 16 years of age, a person lawfully entitled to give or refuse consent to treatment on his or her behalf. Then you go to the brother or sister and then you go to any other relative. It's only at that stage that you start looking at the public guardian and trustee. That's not the first person you have to go to. You don't have to get a guardianship order. You can turn to the child's parents because that's specifically laid out in paragraph 16(1)6.
Maybe you can illuminate for me where your concern resides, because I quite frankly feel, in a close reading of this section, that the parents' rights to consent on behalf of the child are there. It's quite clearly set out.
Dr Andrews: Just give me a second to re-read this. That's not how I understood it.
Mrs Sullivan: In the meantime, I wonder if I could put another issue on the table that is comparable to a follow-up to Mr Wilson's question, why dentists are in this at all. The issue I raised about the requirement for obtaining consent, if you look at how a health practitioner is defined, you'll see that dentists themselves are defined as health practitioners and therefore are required to provide consent. However, dental hygienists are also health practitioners required to obtain consent.
Dental hygienists work at the direction of the dentist and therefore there would be two processes of consent required. Therefore, the next question becomes, why would the dental hygienist be included in this legislation as well?
Dr Andrews: Just to respond to your comment, under section 11 where it is referring to notice to the public guardian and trustee, it states that "a person who is 16 years of age or more is incapable with respect to a treatment and who is of the opinion that the person may need decisions with respect to treatment to be made on his or her behalf on an ongoing basis may notify the public guardian and trustee of the matter, using the prescribed form."
Subsection 11(2) says, "The notice is obligatory if the health practitioner is of the opinion that the incapacity has lasted for at least six months and is likely to continue."
That supersedes any involvement of the parent because I am now obligatorily required to notify the public guardian and trustee, now that he is 16 years of age, that this individual is going to have an ongoing incapacity.
Mr Winninger: Maybe at this point I'll defer to Mr Fram so that he can reconcile these two sections for you, unless the Ministry of Health wants to do that.
The Chair: Mr Fram.
Mr Winninger: Have a seat.
Mr Steve Fram: Thanks. Everybody always gets excited when I get on my knees. Women think I'm proposing.
Mr Jim Wilson: I was just going to ask you to explain that, Mr Fram.
Mr Owens: We'll leave it to your fertile imagination.
Mr Fram: You were alluding to section 16?
Dr Andrews: No, section 11.
Mr Fram: All right. First of all, in our first illustration we weren't talking about a person over the age of 16. Nevertheless, what this is supposed to do is to be a provision that, where a health practitioner finds that somebody is going to be incapable of a broad range of things and is going to need a substitute decision-maker on an ongoing basis, since the public guardian -- if you have a family member and the family member can consent, there's obviously no reason to inform the public guardian and trustee. There is somebody to make a substitute decision.
Dr Andrews: That's what I would hope would be the case, but that's not what the bill says. Under subsection 11(2), it says I am obliged to inform the public guardian and trustee, and later in the act, I am then subject to a $5,000 fine if I do not comply with the provisions of the act.
Mr Fram: Okay. You are to read (2) with (1). Subsection (1) starts out with a hypothesis that you have found that a person 16 years of age or more is incapable with respect to treatment and you are of the opinion that the person may need decisions with respect to treatment to be made on his or her behalf on an ongoing basis.
Dr Andrews: Right.
Mr Fram: Okay. So you have come to the conclusion that not only is this person incapable with respect to the particular treatment decision about his teeth, but this person is going to have an ongoing need for decision-making on an ongoing basis; not a sporadic basis, but an ongoing basis.
Ms Akande: Sorry. May I interject and tell you that it says in section 12, "Sections 10 and 11 do not apply if the person has a guardian of the person appointed under" --
Mrs Sullivan: That's the point.
Dr Andrews: Right. Under section 12, it says that that guardian is under the Substitute Decisions Act, 1992. Under the Substitute Decisions Act, parents are not automatic guardians of their children over the age of 16. An application must be made for a power of attorney for personal care, for that individual to be a guardian of that individual over the age of 16.
Mr Fram: Okay. Over the age of 16, if people know who they can trust and that they will need somebody to help them with decisions, they can choose their parents.
Dr Andrews: Absolutely. If that process has occurred.
Mr Fram: Right. So if that's done, we get the public guardian and trustee out of the issue.
Dr Andrews: Then you don't have a problem. I think the issue is --
Mr Fram: Okay. Now we get to the second subsection. You now have concluded that the person in the hospital is going to have ongoing decisional needs for a period of more than six months and doesn't have a guardian and doesn't have an attorney, so it says you have to give notice to the public guardian and trustee of the situation.
Dr Andrews: Right.
Mr Fram: What the public guardian and trustee is going to do is to check out the situation and see if somebody can be appointed as the attorney for this young person.
Dr Andrews: My question is: Is this doing a service to the needs of the patient? We are inflicting a process on this individual that can potentially lead to harm. We're presenting them with an extended delay, because they now have to meet with the public guardian and trustee. The public guardian and trustee has to check into the situation and see if the best thing is to have the parents be the guardian. They are then instituted as the guardian --
Mr Fram: There's no delay in the delivery of dental service.
Dr Andrews: Why?
Mr Fram: Because it doesn't say that you stop. This is just --
Dr Andrews: I don't have informed consent then.
Mr Fram: No, but you've got the parent to consent. You see, we go into the --
Dr Andrews: But they are not the guardian. How can they consent if they are not the guardian?
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Mr Fram: Because under this act, they are the highest person on the list to consent to the particular treatment that you are giving. What that section that we were talking to is about is to alert the system to the fact that somebody is going to be in the need of a guardian or an attorney on a long-term basis. In the meantime, we plug back into the Consent to Treatment Act and we're saying, "Okay, if you've got the parent to consent and the person is incapable but doesn't want to go to the review board, go ahead."
Dr Andrews: My concerns then are twofold: One is that it puts the health practitioner in the position of being an enforcement officer, where I have been dealing with this family for 10 to 12 years without any problems of consent or involvement or anything like that. This child then turns the age of 16 and I now have to inform the public guardian and trustee of the situation.
To me, that puts me in a position where I may not belong. Because this child is 16 and the parents do not have official guardianship over the child, I am in a position where I have to make this notification and I don't feel that I have any responsibility for doing that.
Mr Fram: Let's turn this around. You are being both helpful to the child, to the young person, and to the parents.
Dr Andrews: The parents will not view me as being helpful.
Mr Fram: I know, but you see --
Dr Andrews: The parents will be viewing me as putting up another roadblock that they have to jump over.
Mr Fram: Yes, but you're perceiving it as a roadblock. Part of this whole process of public education, this person that you've identified is going to have ongoing needs, health and otherwise, over a long period of time.
Dr Andrews: My point is that the Ministry of Community and Social Services should be taking the responsibility of making this notification to the public guardian and trustee, and it should not be the position of the paediatric dentist, or any other dentist or health care practitioner, to have to make a notification to the public guardian and trustee of the incapacity of this individual.
Mr Fram: But you're not doing anything bad. It's not a bad thing.
Dr Andrews: You do not perceive it as a bad thing, but the parent who then has to deal with the process perceives it as meddling on my behalf, and I do not feel that I have any business being put into that position. That's my first concern.
My second source of concern is that it's not always the parents who bring the child, especially the special needs individual; it's not always the parents who brings that individual to the dentist. Now I have to deal with the case worker or attendant who has brought the individual to the dentist. So I don't have that necessary consent that you say I have under this bill through the parents, because they're not the parents and they don't fall within the listing of family or any other relative or the incapable person's brother or sister within that listing. I now have to deal with that individual.
Mr Winninger: Could I just complete the response very briefly to the question that was posed? Looking at these two sections very carefully, I note that section 11 only applies to a person over 16 years of age, that it will not hold up treatment of children in any way, and I don't see any logical inconsistency between these two sections.
Section 11 merely provides a safeguard for those people over age 16 that may require some plan of care in the future, and it's made mandatory if it's six months. But to an ordinary parent who brings a small child for treatment, the parent will make the substitute decision to consent or refuse treatment on the child's behalf and you don't need the involvement of --
Dr Andrews: Absolutely, and I appreciate that. I think that change that has been made to the bill in order to designate age has been a major step forward.
Mr Winninger: So bringing in the public guardian and trustee here is a bit of a red herring because we're not dealing with the PGT in these circumstances at all.
Dr Andrews: Okay, the concern -- and I'm not referring to the young child, I am referring to the individual that is 16 years of age or older that I will have to deal with as a paediatric dentist because I am the only person out there that the family has available to them to provide treatment.
Mr Winninger: Well, would it not concern you where you've got a person over the age of 16, seemingly incapable, that there be some protections there before you treat that person outside of an emergency situation?
Dr Andrews: The protections that I have had in comfort is the parent and having the parent who is the primary individual who is responsible for the care of this individual to provide to me the consent that is required, and that would continue under this bill.
My only concern here is that I'm being put in the position of notifying the public guardian and trustee of the situation, and I don't want to feel that it's our position to be put into that place. That should be up to the ministry of social services, not up to the individual dentist to ask each individual: "Do you have power of attorney over your child? You don't? Okay, well then I have to call the public guardian and trustee." That's not my place.
Mr Winninger: Well, I don't know how often you encounter parents with children over the age of 16, but I can't believe it's that prevalent that it would pose an insurmountable problem under this legislation.
Dr Andrews: At Mount Sinai Hospital, we see 25 patients a day twice a week, of which I would estimate easily a third would fall into that category.
Mr Winninger: Incapable and over 16?
Dr Andrews: Absolutely.
The Vice-Chair: I want to thank you very much for that fine presentation.
CITIZEN ADVOCACY WINDSOR-ESSEX
The Vice-Chair: Next witness is Citizen Advocacy of Windsor-Essex, please. Good afternoon. You have a half-hour for your presentation. The committee would appreciate if you would leave some time at the end of your presentation so they can have some questions and comments. Before you begin, could you please read your names into the record. Begin when you're ready. Thanks very much.
Ms Shirley Jarcaig: Hello, my name is Shirley Jarcaig. I am the managing director of Citizen Advocacy Windsor-Essex. I would also like to introduce you to our president, Nola Millin, who is setting next to me, and to Marie LeBel, who will be acting as Nola's interpreter since she communicates through a word board.
We wish to thank the committee on administration of justice for this second opportunity to speak with you about the proposed advocacy legislation. Although we definitely have our concerns about how the new advocacy system may affect our organization and the future of voluntary, long-term advocacy in Ontario, we wish to also express our support of the recent changes made in Bill 74. We also express our support of recent changes made in Bill 74. We consider this bill a good, sincere effort on the part of this government to address the needs of a growing segment of our population who've been ignored and neglected for far too long.
The clarification made in Bill 74 that states that no service-providing community agency can also provide advocacy services will ensure that there will be no question of conflict of interest. It will also ensure that the system will be truly consumer-driven.
Empowerment of the disabled and seniors can only happen when they are guaranteed control. Years of conditioning and prejudice must be eliminated by education and example. The Advocacy Commission and the advocacy system is the example that must be set by this province to prove not only to the disabled and senior communities but the entire society that we truly believe in the equality of all of our citizens under the law. Who is better qualified to safeguard the quality of services than the people receiving them?
We would also like to express our satisfaction with the introduction of an advisory committee to the Advocacy Commission that will recognize the interests, concerns, responsibilities and rights of families and care givers. The perception expressed by many groups that advocates would be a divisive threat to the family unit and to devoted care providers will hopefully be eliminated by this new provision.
Our organization through the years has found that it is the exception rather than the rule when family interests do not support the vulnerable individual. It would impede the consumer empowerment process, however, if family members and care givers were to be directly involved with the commission. The advisory committee gives family members and care givers access to the system without giving them control.
It is still our belief that all disability groups should be represented by consumers, including those with neurological disabilities. Making this one group an exception is discriminatory and could lead to other exclusions in the future.
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We feel all disabled individuals should have access to advocacy. Any designation will be a problem for those individuals who have difficulty with identifying themselves as disabled, such as individuals with AIDS, and seniors who do not consider themselves disabled but due to problems of aging are in need of assistance. We feel that the moderate to severe change is not necessary and will lead to added confusion, excluding individuals who are still in need of the system.
We were pleased to see that non-instructed advocacy is now included in the Advocacy Act. We do not, however, agree with the very limited access to it.
We have people in our program who require advocacy on an ongoing basis. It is only with the ongoing monitoring of care that abuse can be prevented. We believe prevention is far better for the wellbeing of the individual than to wait until a life-threatening situation develops to take action. Many laypeople find the health care system intimidating. Calling an advocate in with this qualification could be viewed by both the family and the service provider as the least intrusive measure.
We believe that long-term advocacy in relationships that develop and enhance natural supports is the best way for volunteers to practise advocacy.
There is much good that can come from this new advocacy system, and we look forward to seeing this legislation becoming a law that will enhance our society.
The Vice-Chair: Is that all?
Ms Jarcaig: That's it.
The Vice-Chair: Any comments or questions?
Mr Owens: I'd like to thank the group for its presentation. You certainly touch on some issues that I have a deep and abiding interest in. The first is your point with respect to conflict of interest. We've had a number of presenters come forward and say there's an inherent conflict of interest by having service providers in fact doing the advocacy as well. In dealing with the Adult Protective Services Association of Ontario in the person of Trish Spindel, she's been quite eloquent in terms of that, as well as Patrick Worth from People First, in terms of his strong objections to service providers providing advocacy services.
The second and ongoing concern of mine is with respect to the non-instructed advocacy. I firmly believe we need to strengthen that section in order to provide for quality-of-life issues as well. At the point where it reaches that a person's life is in danger or serious harm in fact a lot of time has passed, and perhaps it's too late at that point and it doesn't matter whether the person is in group home, in a private residence or a nursing home. These quality-of-life issues need to be addressed so that our most vulnerable citizens are able to lead as productive and challenging life as possible.
Mr Gary Malkowski (York East): Thank you for your presentation. Not only your group has raised a concern, but other groups have talked about the exception for the neurological category. I'm just interested. Do you feel that it is important for us to consider removing subsection 15(1), specifically the exception referred to in paragraph 6, to allow people with neurological problems to be involved?
Ms Nola Millin: Yes, it's very important.
The Chair: Any further questions or comments?
Ms Carter: Just following up on Mr Malkowski's question, if there were a provision in there that as soon as any group managed to develop an organization of 20 consumers or more, which is I guess the provision for the other groups, they would be represented on the appointments commission, do you think that would solve the problem?
Ms Jarcaig: Yes.
Ms Carter: As far as non-instructed advocacy goes, as you say, we have gone quite some way with the amendments to open that up. If somebody is in danger, an advocate can draw attention to this and can do something about it. What, in detail, do you feel should be done to extend advocacy? Would it depend on a person being able to make his or her wishes known by some means or other, or would we say that an advocate could intervene if a person appeared to be being neglected or not treated right, or whatever, regardless of whether he or she could communicate, even though it wasn't an emergency?
Ms Jarcaig: I know within our programs -- and we have volunteers who go into institutions and deal with people who require ongoing care -- it's the monitoring of that care, the person coming in there on a regular basis and seeing that the person is receiving the proper kind of care, that prevents any kind of abuse from happening.
This can easily be done by a volunteer. You don't need a tremendous amount of training for it. It's just like any family member who comes in on a regular basis and sees that mom was fed her dinner and has been taken to the bathroom on a regular basis and those kinds of things. But if there is no one there, that's when the abuse takes place.
Ms Carter: And of course we do accommodate voluntary advocacy in the act so that somebody who chose to perform that function would be empowered to do so.
Ms Jarcaig: That's right. But if that person is not capable of giving instruction, what we're concerned about is that the care providers in the institution will not feel that anything that advocate says is of any weight.
Ms Carter: So we need to broaden that.
Ms Jarcaig: Yes, that's what we feel.
The Chair: On behalf of this committee I'd like to thank you for coming in this afternoon and giving us your presentation. We appreciate it.
Seeing no further business before the committee this afternoon, we'll adjourn until 10 tomorrow morning.
The committee adjourned at 1639.