The Substitute Decisions Act, 1992, deals with decision-making for personal care, as well as financial management, in particular permitting the creation of a power of attorney for personal care. The criteria set out in the Substitute Decisions Act, 1992 for competence to give a power of attorney for property management is different from the criteria for a power of attorney for personal care, with a somewhat higher standard in place where property management is involved. Instructions in a power of attorney often are included to permit the attorney to withhold treatment when it will only prolong life but will not lead to recovery. That said, such instructions need to be specifically considered with the person making the document. The degree of specificity to be included in the document may depend upon the actual stage of life and overall health of the person giving the power of attorney. When considering the types of instructions to be included, it is wise to keep in mind that it is not usually possible to anticipate all future circumstances that may arise and require a substitute decision maker to make a care decision. Generally the types of directions given in a personal care power of attorney should allow the attorney enough latitude to be able to adapt to the actual circumstances that he or she may face in the event that substitute decision-making is required.
Rules for execution and witnessing of a power of attorney for personal care, and for the revocation of it, are the same as those applicable to the execution, witnessing and revocation of a power of attorney for property management.' In addition, there are restrictions on the individuals capable of being attorneys, in that anyone providing health care to the donor for compensation or providing residential, social, training or support services to the donor for compensation, cannot act as an attorney for personal care unless he or she is also a spouse, partner or relative of the donor.2 This limitation prevents paid caregivers from also taking over decision-making powers. Basically, a person is capable of giving a power of attorney for personal care if he or she has the ability to understand whether the proposed attorney has a genuine concern for the person's welfare, and appreciates that he or she may need to have the proposed attorney make decisions for him or her. The person giving a power of attorney can be capable to give a power of attorney even if he or she is incapable of actually making decisions regarding personal care. However, if the power of attorney document for personal care contains specific instructions regarding decisions to be made, the donor of the power of attorney must be capable of making such decisions at the time the power of attorney is given. Therefore, if the donor wants to provide specific instructions about the nature of care decisions that are wanted, the donor must be capable of making those decisions when the power of attorney is signed. A power of attorney for personal care can specify the way in which the person is to be assessed, who is to do the assessment, and specific factors to be considered in making such an assessment).
A power of attorney for personal care can also detail the donor's wishes in terms of care, which is why powers of attorney for personal care are often combined with, or mixed up with "living wills" and "advance medical directives". In all such cases, the donor of the power of attorney is in fact giving instructions to his or her substitute decision-maker as to his or her wishes for treatment, which the attorney is required to take into account in making decisions, as "prior capable wishes" of the donor) In the preparation of a power of attorney for personal care, it is important to understand that the document itself appoints a decision-maker who will be responsible for making care decisions if the donor is incapable of doing so. The power of attorney document may or may not identify the types of decisions to be made by the attorney when he or she is acting as the substitute decision maker. In the absence of specifically stated and known wishes, the substitute decision-maker is charged with making care decisions that are in the best interests of the incapable person. The issue of setting out specific instructions in a power of attorney goes even further in the case of a power of attorney which allows the attorney to use force if necessary to ensure that the donor of the power of attorney is assessed and receives treatment. Such powers of attorney are sometimes referred to as "Ulysses Contracts", and if properly prepared, with the necessary proof that the donor was capable when the document was signed, permit attorneys to impose treatment on an unwilling patient. Such situations arise with diagnosed schizophrenic patients who when under mediation know that they must have it, but who will resist treatment and mediation if they ever cease taking it. For the "Ulysses Contract" to accomplish its purpose, the donor must be assessed by a qualified capacity assessor within 30 days of signing the Power of Attorney, and the assessor must complete Form D under the Regulations to the Substitute Decisions Act, 1992 to confirm capacity to make such a power of attorney which is described in the Regulation as a "Power of Attorney for Personal Care with Special Provisions" for the purpose of paragraph 2 of subsection 50(1) of the Act.
If the donor of a personal care power of attorney has very specific wishes in connection with a known medical condition, it is advisable to consult the individual's medical advisors. In order for the wishes as expressed to be effective, they need to conform with medical language and practice. Therefore, to ensure that the decision-maker can implement the actual wishes of the donor, it is important that the language of those wishes be expressed in a way that can be carried out. For example, a direction in a personal care power of attorney to use "no heroic measures" may not be an effective way to express care wishes, particularly for an individual already diagnosed with a condition where certain care programs are known and expected. The Substitute Decisions Act, 1992 anticipated the possibility of compensation to an attorney or guardian for personal care, in that s. 90(1)(c.1) allows for the ability to pass Regulations setting out compensation terms for guardians and attorneys of the person. However, no such Regulations have been passed. Some case law has gone forward where a personal care attorney or guardian has sought compensation. No specific scale has been established, but the courts have held that there is nothing to prevent compensation being paid if there is evidence of the amount and type of work done, and some means of calculating its value. An actual time log has been allowed to form the basis for a compensation award. A person making a power of attorney for personal care who wants to ensure that the attorney is paid should specify his or her wishes in the power of attorney document, and should also put a complementary direction into his or her power of attorney dealing with property management, to require the attorney for property to pay compensation to the attorney for personal care.
2. Activation of Power of Attorney for Personal Care
A power of attorney or property management, if stated to come into effect on signing, can be used whether the donor of it is incapable or not. A power of attorney for personal care is effective only if the donor is incapable of making care decisions for him or herself. Incapacity to make care decisions is defined in the Substitute Decisions Act, 1992 as an inability to appreciate the reasonably foreseeable consequences of making a decision or of not making a decision. Care extends to health care, nutrition, shelter, clothing, hygiene and safety. While many lay people tend to think of the power of attorney for personal care as relating to end of life decisions only, in fact, much of the decision-making that can fall to a substitute decision maker in the case of incapacity is of a much less dramatic and more long term nature. Choice of and preparation of applications for long term care, decisions around additional care, hospitalization and other treatment for various ailments are all part of the role of an attorney for personal care, and anyone giving such a power of attorney needs to consider the need to appoint someone who will be able and willing to take on the role for possibly a prolonged period of time.
Powers of attorney for personal care are often considered in the same vein as "living wills" or "advance medical directives" which generally are intended to address decision making at the end of life. In fact and practice, powers of attorney for personal care become the instrument for consent to a much broader spectrum of treatment issues, particularly in terms of placement for individuals on discharge from hospital, or in applications for long term care placement. In many instances, the capacity assessment to determine that the placement papers or the application documents are to be signed by the substitute decision maker is not carried out on a particularly formal basis and it may be a very subjective determination. If disputes arise in such circumstances, appeal to the Consent and Capacity Board may be the most appropriate means of proceeding as the board has and does rule on treatment decisions; the scope of powers of attorney for personal care and the interpretation to be placed on living wills; advance directives; and other statements put forward as to the prior wishes of the capable person which will conflict with those of the now apparently incapable person. The alleged incapable person may well also exercise rights to hearing before the Consent and Capacity Board in challenging findings of incapacity.
If there is a power of attorney for personal care, and there has been a finding that the donor is incapable of making personal care decisions, the attorney is able to make necessary care decisions. If there is a power of attorney in existence, and the attorney has reason be believe the donor is incapable and the donor does not object to the attorney acting, and there is nothing in the power of attorney document that sets out the process for determining incapacity, the attorney can also step in under those circumstances. If there is no power of attorney for personal care and there has been a finding that there is no capacity to make care decisions, the only way of getting a guardian for personal care is to obtain a court appointment. There is nothing for personal care that is comparable to the statutory guardianship system in existence for property management. If a power of attorney for personal care has been activated due to mental incapacity on the part of the donor, the attorney is then called upon to make care decisions. If the power of attorney limits the decision-making, for instance permitting medical care decisions, but not allowing decisions on housing, the attorney may not be able to fully function, and the need for one of the excluded decisions may force an application to the court for directions. If a power of attorney for personal care is lacking in powers to allow the decision-maker the scope needed for the necessary decisions, the appointment of a guardian for personal care may be the only viable alternative. If the issue is more of a dispute among family members over how care is to be provided, and a court application arises, either to interpret a power of attorney or to replace it with a guardianship, the same considerations as those mentioned in connection with court applications regarding property management apply. That is, costs can be high and unless a court is satisfied that the issues are legitimately about the well-being of the vulnerable person, and not a control battle among family members, the costs of the fight will have to be borne by the family members engaged in it.
If a power of attorney for personal care expresses specific intentions and wishes, the named attorney is required by the Substitute Decisions Act, 1992 to carry them out to the extent reasonably possible, and in the absence of known wishes, to act in the best interests of the donor of the power of attorney. Similarly, the Health Care Consent Act, 1996 requires substitute decision-making for health care decisions to be made having regard to known, capable wishes of the patient. If such wishes cannot be ascertained or if it is impossible to comply with that wish, the decision-maker must act in the best interests of the patient. The issue of determining wishes, and applying them, has been before the court recently in the context of a power of attorney for personal care which contained extensive directions to provide virtually all care possible. The application of those provisions was essentially overruled by the Consent and Capacity Board, which can be invoked pursuant to the Health Care Consent Act, 1996. It ruled that there was no proof that the terms contained in the power of attorney were the real expression of the donor's wishes (he was not familiar with English and there was evidence that they had not been fully explained to him) and that in his circumstances (he was terminally ill) the treatment plan was reasonable and the refusal by the attorney to accept that plan was not in the best interests of the individual. An appeal of the Board decision to the Superior Court of Justice was dismissed.
Other decisions of the Consent and Capacity Board, and in some cases appeals from those decisions, tend to suggest that where there are disputes among family groups or between family members and care providers as to the type of care that is or must be provided, the Board and the courts tend to attempt to apply levels of common sense. Interpretations of the language of Personal Care Powers of Attorney are made in the context of the actual conditions that have developed and several decisions have held that, despite directions in a Personal Care Power of Attorney, the decision of a health care team will be adopted if there is reason to expect that the donor of the power of attorney did not really anticipate or direct his or her mind to the actual events that have occurred. The conclusions that can be taken from the various decisions point to the notion that courts and the capacity board will find that maintaining a patient alive at all costs may not be considered to be in the best interests of the patient, and on the other hand that the particular personal opinions of the decision maker will not be upheld as being in the best interests of the patient.
The Health Care Consent Act, 1996 specifies a number of decisions for which informed consent is required, and the attorney for personal care must make those decisions. Similarly, other decisions associated with overall care arise, including matters relating to family law issues like separation, divorce, access to children, housing and the like, which are not covered by the Health Care Consent Act, but affect the overall care of the individual. The attorney is also required to make those decisions. The Health Care Consent Act, 1996 defines the principles that must be taken into account by the substitute decision-maker in giving and refusing consent. They are first that if a wish applicable to the circumstances, made while the person is over 16 years of age and capable, is known, then consent shall be given or refused in accordance with that wish, and if no capable wish is known to apply or if compliance with such expressed wish is impossible, then the decision making must be in the best interests of the incapable person. The statute defines best interests as including a consideration of the values and beliefs held while capable, which are believed to be ones that would continue to impact the person if he or she was still capable, and consideration of the proposed treatment in terms of whether it would improve the condition or well-being of the incapable person, whether it would prevent the condition from deteriorating or reduce the extent or rate of deterioration, whether the person's condition or well-being is likely to improve, remain or deteriorate if there is no treatment, whether the benefit of the treatment outweighs the risk and whether there is a less intrusive or restrictive treatment that would be beneficial.
3. Court-Appointed Guardian of the Person
When there is no one appointed as a substitute decision-maker by way of a power of attorney for personal care, and on-going care decisions will be needed, application can be made to court to appoint a guardian of the person. Either an individual or the Public Guardian and Trustee can initiate the application. The process for appointment is similar to the process for appointment of a guardian of property. As in the guardianship for property, a court must be satisfied that there is incapacity, that decisions must be made, and that there is no reasonable alternative to guardianship. There is no equivalent for personal care to a Statutory Guardianship as there is for property management. Either care for an incapable person is managed by an attorney appointed in a power of attorney or by a guardian appointed by the court.
An applicant wishing to become guardian must file a guardianship plan which describes what the guardian will do once appointed. The statute sets out a number of elements that must be fulfilled in the management of an incapable person's care, including encouraging participation of the incapable person in his or her care to the fullest extent possible, fostering of contact with supportive family members and friends of the incapable person, and consultation with the family and friends of the incapable person. Overall the stated goal in the Substitute Decisions Act, 1992 is the fostering of independence of the incapable person to the furthest extent possible. Reported cases dealing with applications for guardianship are not plentiful, but those that exist specifically consider the interests of the incapable person as being paramount. The choice of a guardian, when it is contested, is decided on the basis of who can best address the needs of the incapable person. Disputes over treatment decisions, usually between the recommendations of a medical practitioner or medical team and the substitute decision-makers, can be referred to the Consent and Capacity Board. The Board can be convened on short notice, usually within 7 days of an application being made, and the Board members hear the positions of the various parties and make a decision on the course of treatment to be applied. This can include medications to be given or withheld, and commonly whether life support is to be continued or withdrawn. An appeal lies from the Board decision to the Ontario Superior Court of Justice, and then to the Court of Appeal and ultimately to the Supreme Court of Canada.
From the perspective of the substitute decision-maker put into the position of managing the care of an individual who clearly no longer has capacity to make decisions, the issues are no less difficult. These considerations were the basis for the decision by the Supreme Court of Canada in Cuthbertson v. Rasouli, where the patient had been in a persistent vegetative state since he had suffered complications after surgery and was on full life support. The medical team had advised the family that there was nothing more that could be done and that life support should be withdrawn and the patient be allowed to die. The family refused to allow the withdrawal of life support on the grounds that the prior held beliefs of the patient required life to continue regardless of physical pain and suffering that might accompany it. The matter ultimately went to the Supreme Court of Canada on the question of whether the withdrawal of life support amounted to treatment and as such whether consent from the substitute decision-maker was needed in order to do so. The court held that life support is treatment and its withdrawal is a treatment that requires consent, such that the substitute decision-maker had to consent before such a step could be taken. Ultimately the court also ruled that in a dispute between the medical staff and the substitute decision-maker over the appropriateness of such a treatment, the proper forum for the determination was the Consent and Capacity Board, operating under the Health Care Consent Act, 1996. Whether a power of attorney for personal care would have created a different outcome is hard to predict.
Since the decision of the Supreme Court of Canada in Cuthbertson v. Rassouli, a number of decisions have addressed end of life decision-making, and the role of the substituted decision-maker, with what seem to be somewhat inconsistent results. Both the criteria for allowing substitute decision-making and the role of the substitute have been reviewed. In the area of determining capacity to make decisions, the Bentley (Litigation guardian of) v. Maplewood Seniors Care Society matter in British Columbia determined that the patient was not in need of a substitute decision-maker in determining whether feeding was to continue. Although the patient suffered from advanced Alzheimer's disease and was unable to speak, and her daughter as litigation guardian maintained that her mother would not want her life prolonged by force feeding, the court held that her mother in fact was making her own decisions on that issue. On the facts as found by the court, the patient was accepting food by opening her mouth, indicating preferences for certain foods and refusing to eat when full. Based on these findings, the court refused to look at prior stated preferences, and ruled that feeding was to continue, that the daughter could not make decisions on behalf of her mother, and that cessation of feeding by the care facility would amount to neglect which could be actionable against the facility. An Ontario decision in Ackie v. Manocha upheld a decision of the Consent and Capacity Board, requiring a substitute decision-maker to consent to palliative care for her daughter, rather than being able to insist upon indefinite active treatment. There was a clear finding that the patient did not have capacity to consent or express her wishes, such that the substitute decision-maker was required to make the care decisions. However, the mother's claim that her daughter's spiritual views and stated belief in miracles did not overrule what was confirmed as a decision in the best interest of the patient, namely to provide palliative care for pain relief only. Some months later, the court made a ruling in favour of the views expressed by the substitute decision-maker in Hamilton Health sciences Corp. v. H. (D.) where the mother of a minor child wanted to discontinue conventional chemotherapy treatment for her daughter to treat leukemia in favour of what was presented as traditional aboriginal treatment methods. The child was 11-years-old and found to lack capacity to make her own care decisions, such that her mother was the proper substitute decision-maker. However, the court ruled that the child was not in need of protection, despite the position taken by the hospital medical team, and the ruling upheld the right being advanced by the mother to follow traditional aboriginal methods as the exercise of a constitutional right allowed under the Charter, and that the intervention of the court to force modern treatment practices would be an erosion of aboriginal rights.
The decision of the Supreme Court of Canada in Carter v. Canada (Attorney General) on assisted suicide, struck down as unconstitutional the Criminal Code sanctions against doctor assisted suicide, as they related to a competent adult person who consented to the termination of life and had a grievous and irremediable medical condition which was defined as including an illness, disease or disability which caused enduring suffering that was intolerable to the individual. The court decision specifically stated that there were no pronouncements being made on other situations where physician-assisted suicide could be sought and in particular the decision did not specifically address the involvement of a substitute decision-maker. However, it is likely that the matter of whether or not authority can be given in the form of a power of attorney or advance medical directive, to permit a substitute decision-maker to authorize assisted suicide will ultimately have to be addressed.