As was thoroughly discussed in the preceding Chapter, under current Ontario law, where an individual is determined to lack legal capacity to make a particular type of decision, but a decision nonetheless must be made, a substitute decision-maker (SDM) will be appointed to make the decision on behalf of the individual. While the Public Guardian and Trustee (PGT) and trust companies can act as SDMs in certain circumstances, in the vast majority of cases, SDMs are family or close friends of the individual requiring assistance. This Chapter will review current law as to who may act as an SDM in Ontario, and consider some options for expanding who may act in these circumstances, as well as highlighting the need for better supports for family and friends who act in these roles.. Some of the considerations explored below may also be applicable to the question of who may act as a supporter or co-decision-maker, should Ontario legislation be amended to formalize such roles.
The role of an SDM is a demanding one, not to be taken lightly. The legislation makes this clear. Under the Substitute Decisions Act (SDA), guardians and those acting under a power of attorney (POA) are held to a high standard. A guardian, as well as a person acting under a POA for property, is a “fiduciary whose powers and duties shall be exercised and performed diligently, with honesty and integrity and in good faith, for the incapable person’s benefit”, while guardians and those exercising POAs for the person must exercise their duties “diligently and in good faith”. Both the Health Care Consent Act (HCCA) and the SDA set out detailed and relatively complex requirements guiding how decisions are to be made on behalf of another person. Guardians and persons acting under a POA have a number of procedural duties, such as explaining their powers and duties to the person for whom they are acting, encouraging the individual’s participation in decision-making, fostering contact between the individual and supportive family and friends, and consulting from time to time with family and friends. Guardians and those acting under a POA must also keep detailed records of their activities. Under the SDA, substitute decision-makers may be held liable in some circumstances for damages resulting from a breach of their duties.
Beyond the legal responsibilities, SDMs often face many practical, emotional and ethical challenges. In some contexts, such as treatment, decisions may be high-stakes, involve complex information and require rapid response. Decisions about property management may have long-term consequences for the well-being of the person involved, while decisions about personal care may affect the most intimate aspects of an individual’s life. Decisions about admission to long-term care are rarely made in cheerful circumstances, and while admission may be necessary, such a decision will often be made over the objections of the person whom it is intended to benefit. Not infrequently, despite the guidance of the legislation, it will be far from clear what the “right” thing is to do in a particular circumstance. In addition, the reality is that there are relatively few practical supports for those taking on the role of substitute decision-maker.
It is not surprising then, that family members and close friends are often viewed as being those best equipped to tackle these challenges: they can often bring the profound commitment to the wellbeing of the individual that is necessary to perform this role well, together with a deep personal knowledge of the individual that can guide decision-making and assist with the practical and emotional aspects of the task.
It is also true, that not every individual will have family or friends who are able and willing to perform this role to the standard that is required. Not every family has the practical, ethical and emotional skills to perform this role, let alone the level of intimacy and commitment that is desired. Other families may be willing, but may be already overburdened with other challenges, and unable to take on another significant responsibility. And as is discussed briefly in Chapter II, demographic changes mean that a growing number of people have no family or close friends who are willing and able to act for them. This may be because a person has outlived all of her or his family and close friends, because geographical mobility has dispersed relationships, or because stigma and social isolation associated with some types of disabilities have eroded support networks. In all of these cases, alternatives beyond family and friends must be identified.
Currently, Ontario’s Public Guardian and Trustee (PGT) fulfils an important role as decision-maker of last resort. Under both the HCCA and SDA, where there is no suitable person who is available and willing to act and decisions are required, the PGT can be appointed to do so. While this role is vital, the PGT cannot of course reproduce the type of intimate personal relationship that is often thought of as the ideal foundation for substitute decision-making, and some persons with disabilities may dislike the idea of having decisions made for them by “the government”, viewing it as intrusive. As well, the demographic changes referenced above are likely to create increasing demand for last-resort decision-making.
Advocates of supported decision-making, an evolving approach to decision-making described in the previous chapter, have acknowledged the challenge to the implementation of this approach posed by individuals who lack relationships of trust and intimacy. While substitute decision-making may often be best carried out through close personal relationships, supported decision-making is fundamentally premised on the presence of one or more supporters who have deep familiarity and commitment to the individual requiring assistance. By its nature, supported decision-making requires the existence of close personal relationships. In some cases, these do not exist. As was noted by Michael Bach and Lana Kerzner in their 2010 paper for the LCO,
Many individuals with significant intellectual, cognitive and psychosocial disabilities simply do not have others in their lives with whom they are in a trusting relationship based on shared life experience and personal knowledge. A life of discrimination and exclusion has left them without such relationships. This does not mean that such relationships cannot be developed. There is a large body of good practice and tools to assist people with more significant disabilities in developing personal relationships with others. However, this work takes time, intentional relationship building, and community-based supports to facilitate the process, identifying individuals who can play this role and provide the person with a support network.
For people with significant disabilities the outcome of relationship-building supports is the development of relationships and support networks which can provide representational supports at some point in the future. In their case, the access to representational supports maximizes exercise of their legal capacity.
The Framework principles of promoting participation and inclusion point to the importance of designing society in such a way that older persons and persons with disabilities have meaningful connections to their communities and are well-integrated in society. The growing number of individuals who do not have such connections, who are marginalized and isolated and do not have family and friends to assist with decision-making needs, highlights broader societal shortfalls in promoting participation and inclusion. These broader social, economic and attitudinal barriers are beyond the scope of this project to address, but are part of the context that must be understood in evaluating legal capacity and decision-making laws and identifying options for reform.
Certainly, the law should respect and recognize existing mechanisms for participation and inclusion, and should not create barriers to the development and maintenance of the relationships that are essential to the decision-making processes for those affected by this area of the law. The challenges experienced by those individuals who have no family and friends to assist them with decision-making needs highlight the close connection between the principles – in this case, between the inclusion and participation in society of persons with disabilities and older persons and the ability of these individuals to develop and exercise autonomy and independence. For example, a person who has, as a result of the stigma and discrimination associated with his or her disability, had limited opportunities to participate in education, employment or social activities and as a result has a limited social network, will be less likely to have the close and trusting relationships that can best support decision-making, whether through supported or co-decision-making or through substitute decision-making that is committed to participation and close attention to the values and wishes of the person for whom the decision is made. As well, the principle of recognizing that we all live in society highlights the importance of paying attention to the needs and circumstances of those who have relationships with persons who fall within this area of the law, a