This Chapter sets out some of the background and contextual information that is helpful to understanding the operation of Ontario’s laws related to legal capacity, decision-making and guardianship, and to analyzing some of the issues related to reform of the law. It begins by providing some background information about decision-making. It then sets out some basic information about Ontario’s statutory scheme and its history, and provides some general information about the individuals affected by this area of the law and the contexts in which it operates.
A. Decision-making and the Law
1. The importance of decision-making
Decision-making has a public as well as a personal aspect. When we are interacting with other individuals or organizations, decision-making is also associated with other values, such as clarity, certainty and accountability. When others are being asked to rely on or implement our decisions, it is important for them to be sure that they understand the decision that has been made, that they can rely on the finality of that decision, and that all parties can be held to account to uphold their part of the decision. In this public realm, law plays an important role, for example in determining when an agreement is valid and we are entitled to rely on it, and when a party is liable for a breach of the agreement.
We make decisions all the time. Decisions may be large or small, routine or life-changing, complicated or straightforward, but regardless they are important as expressions of our values and identity, as opportunities to learn from both our successes and mistakes, and as the fundamental means through which we shape our lives. As the Queensland Law Reform Commission has commented, “Making decisions … empowers people by allowing them to express their individuality. It enables people to control their lives and gives them a sense of self-respect and dignity.” At this personal level, decision-making is connected to autonomy, dignity, security and other fundamental values.
Decision-making involves both a process and an outcome. In both the private and the public realm, considerable importance may be attached to the quality of the decision-making process. In the legal realm, for example, a contract is voidable where “undue influence” has tainted a party’s decision-making process, leading to an unjust result. In the private realm, the process of decision-making has a value in itself, apart from the merits of the ultimate decision: a “good” decision-making process (whatever one might consider that to be) may be viewed as enhancing the dignity of the decision-maker, promoting personal growth, or asserting their beliefs, individuality and autonomy.
2. Purposes of capacity and guardianship law
As the laws related to legal capacity, decision-making and guardianship have a very long history, they not surprisingly have been seen as fulfilling a number of different goals. Modern law reform in this area has articulated a number of purposes for capacity and guardianship law. The Health Care Consent Act (HCCA) clearly articulates its purposes in its opening section; while the purposes of the Substitute Decisions Act (SDA) must be inferred from an examination of the statute as a whole. Generally, the law’s purposes may be articulated as follows:
- facilitating, where necessary, decision-making for persons who have been determined to lack legal capacity;
- preventing undue interference in the lives and decisions of persons who have legal capacity;
- recognizing and promoting the role of supportive family and friends in the lives of persons who have been determined to lack legal capacity, as well as providing last resort decision-making mechanisms for those who do not have supportive family or friends;
- supporting individuals in planning for the possibility that they may be found to lack legal capacity at some point in the future;
- providing safeguards against abuse of persons who have been found to lack legal capacity;
- providing rules and principles for substitute decision-making that are clear and that promote both the autonomy and the basic security of persons who have been determined to lack legal capacity;
- ensuring basic procedural protections for persons whose legal capacity is lacking or in question.
3. The limits of the law
Laws related to capacity, decision-making and guardianship are and can be only partial responses to complex practical, ethical and social issues. In understanding this area of the law, it is important to take into account the complexities of family dynamics, the challenges raised by the shortages of resources available to persons with disabilities and their families, the ethical issues raised for families and service providers in their relationships with persons who are at risk for exploitation or abuse or who have difficulty in speaking or advocating for themselves, among other issues.
These laws exist in a larger context of social attitudes and structures that enhance or limit their effectiveness. Many of those interviewed by the LCO during the preliminary consultation process emphasized the severe shortage of community resources for older adults and persons with disabilities. Institutions and services such as hospitals, community mental health services and home care often lack the resources to provide sufficient supports to persons who are ill, frail or have disabilities. Family and friends, acting as unpaid caregivers, are often stretched to their limits in attempting to support their loved ones to live independently and with dignity in the community. In these circumstances, difficult decisions must be made, and the laws relating to legal capacity, decision-making and guardianship may be seen as or attempted to be used as tools to address painful and difficult issues.
No legislative regime can on its own fully address all of these issues. No law reform can provide supportive family members for all those who are isolated and vulnerable, prevent all abuse of at-risk individuals, or ensure that persons who are frail, ill or disabled always receive the supports that they deserve and require. Law reform in this area may be best understood as one thread, albeit a vital one, in a larger conversation about the rights and roles of persons with disabilities and older persons; the responsibilities of families, communities and government to provide supports; and the level and type of risk that we are comfortable with individuals, particularly vulnerable individuals, assuming.
The application of laws will be influenced by social norms and attitudes, in this case related to disability, aging and risk. As the LCO’s Framework projects emphasized, both older adults and persons with disabilities have been the subject of persistent paternalism and limiting attitudes with respect to their abilities to do and choose for themselves. These attitudes may influence the application of laws related to capacity, decision-making and guardianship, limiting the effectiveness of some of the provisions aimed at protecting the autonomy of those who fall within its reach. While law can have some effect in shifting norms, it cannot by itself transform them. The implementation of new laws will also likely be affected by the attitudes that currently shape the application of existing ones.
- QUESTION FOR CONSIDERATION: What should be the primary purpose or purposes of this area of the law?
B. A Little Legislative History
Ontario’s current statutory regime for legal capacity, decision-making and guardianship took shape as a result of a monumental reform effort spanning the late 1980s and early 1990s. Ontario’s laws at that point, as found in the Mental Incompetency Act, the Mental Health Act, the Powers of Attorney Act and the Public Hospitals Act, were generally considered to be fragmented, dated, unwieldy, and unsuited to modern realities. Three separate law reform initiatives were undertaken during this time. As is evident from the current legislation, outlined in Section C of this Chapter, while this work profoundly influenced Ontario’s current laws, not all aspects of the recommendations of the various committees were finally adopted. In particular the final legislation contained much more minimal mechanisms for advocacy, supports and oversight.
1. The Advisory Committee on Substitute Decision Making for Mentally Incapable Persons (“Fram Committee”): In 1984, the Attorney General appointed a committee, headed by Stephen Fram, to “review all aspects of the law governing, and related to, substitute decision making for mentally incapacitated persons and to recommend revision of this law where appropriate”. The Final Report of this Committee (“the Fram Report”), released in 1987, identified as underlying values for this area of the law freedom from unnecessary intervention; self-determination; and community living through access to support. Key approaches included:
- An understanding of the role of substitute decision-maker that aimed to maximize the autonomy of those determined to be incapable, including requirements related to respect for prior capable wishes, and a duty to support the participation of those found incapable in the decision-making process;
- Greater emphasis on and empowerment of family members as substitute decision-makers, particularly through reforms to the law related to powers of attorney, with guardianship as a last resort;
- Provision of advocacy and supports for those falling under the law, including rights advice in a wide range of circumstances and access to publicly funded advocacy services, with the intent to ensure that the values underlying the law were upheld; and
- A role for the Public Guardian and Trustee (PGT) as a “public safety net” that would have supervisory powers over attorneys and private guardians, act as a decision-maker of last resort, undertake an educative function, and have the power to act in emergency situations involving neglect, abuse or exploitation of persons lacking capacity.
2. Committee on the Enquiry on Mental Competency (“Weisstub Enquiry”): In 1988, the Ministry of Health created an Enquiry on Mental Competency, with Professor David N. Weisstub as its Chair. The Committee was given the task of developing a set of recommended standards for determining the mental competence of individuals to make decisions with respect to health care, management of financial affairs and appointment of a substitute decision-maker. The Final Report of the Weisstub Enquiry concluded that the process for testing capacity must respect both the principle of autonomy and that of best interests, as well as reflecting the importance of proportionality, administrative simplicity and relevance. The Final Report recommended codification of a presumption of capacity, a cognitive approach to the nature of capacity, situation-specific tests for capacity, time limitations on capacity assessments, and procedural protections for individual in the capacity assessment process.
3. Review of Advocacy for Vulnerable Adults (“the O’Sullivan Report”): In late 1986, the Attorney General of Ontario announced a Review of Advocacy for Vulnerable Adults, to be chaired by Father Sean O’Sullivan, to respond to concerns regarding “an unmet need for non-legal advocacy for vulnerable adults living in institutional care settings and in the community”. The Review identified a number of goals for an advocacy system for Ontario, including: providing safeguards against unnecessary guardianship; being independent; encouraging self-advocacy (self-determination) where possible; enhancing the role of family and friends; educating, delabeling and destigmatizing; being flexible; being responsive; promoting cooperation with providers and Ministries; being accessible; being reformative (seek improvements in programs); having clout; and being accountable. The O’Sullivan Report recommended the development of an Advocacy Commission, which would develop standards and procedures, as well as regional offices which would be directed by community-based boards and staffed by advocacy coordinators. These regional offices would assist in the development and appropriate funding of local programs tailored to the needs of the vulnerable adults in their particular communities.
This thorough law reform work provided the foundation for Ontario’s legislative reforms in the early 1990s, and as a result, Ontario has one of the most comprehensive and coherent schemes of the law governing capacity and decision-making in Canada. It has been described as “modern, internally coordinated and fairly thorough”.
In 1991, three new statutes governing legal capacity, decision-making and guardianship were introduced by the Ontario government: the Consent to Treatment Act, the Substitute Decisions Act (SDA), and the Advocacy Act. The Consent to Treatment Act and the Advocacy Act were both subjects of considerable debate and controversy. Critics expressed concerns that the advocacy initiative was “a bureaucratic mess, costly (in a time of increasing fiscal restraint), and intrusive into both the private lives of families and the prerogatives and competencies of professional groups”. The Advocacy Act was repealed in 1995 following a change in government, and the Consent to Treatment Act replaced by the current Health Care Consent Act (HCCA). Some aspects of the current legislative scheme are better understood if one takes into consideration that originally it was envisioned as including the ambitious and comprehensive advocacy scheme set out in the Advocacy Act. The Advocacy Act provided extensive entitlement to rights advice, as well as creating a publicly funded Advocacy Commission mandated to provide both individual and systemic advocacy on behalf of adults whose mental or physical difficulties created barriers for them in expressing or acting on their wishes, or in determining or accessing their rights. That is, the system was predicated on the provision of significant resources aimed at supporting the autonomy of persons with disabilities and safeguarding their rights.
The resulting statutory scheme, consisting of the SDA, the HCCA and Part III of the Mental Health Act (MHA) is described briefly in the following section.
C. Ontario’s Current Legal Context
It is not the purpose of this section to give a detailed overview of Ontario’s statutory regime for capacity, decision-making and guardianship. Rather, it aims to provide an overview of the foundational elements of the key statutes and its general approaches. Specific provisions are detailed in the relevant chapters where necessary to understand particular law reform issues and potential approaches to reform.
1. Foundational Law
Ontario’s statutory regime for legal capacity, decision-making and guardianship must be understood in the light of several foundational domestic laws and international instruments that govern the law or shape its interpretation and application.
The Convention on the Rights of Persons with Disabilities
The most significant of the instruments that the international legal community has created to advance the rights of persons with disabilities is the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD codified the commitments of the international community with respect to the rights of persons with disabilities, detailing the rights that all persons with disabilities enjoy and outlining the obligations of States Parties to protect those rights. Its purpose is to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”. It reflects social and human rights models of disability and therefore highlights the need for society to adapt to the specific circumstances and realities of persons with disabilities in order to ensure respect and inclusion. It recognizes a wide range of specific rights, including rights to:
- live in the community;
- life, liberty and security of the person;
- freedom from exploitation, violence and abuse;
- respect for mental and physical integrity;
- expression of opinion;
- an adequate standard of living; and
- participate in political, public and cultural life.
Canada ratified the CRPD in March 2010 and is bound to “undertake … [t]o adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the [CRPD].” However, the manner in which Canada implements the treaty in domestic law is flexible and legislators “retain full control over domestic law and can choose to ignore Canada’s international obligations, even though doing so would result in breaching these international obligations.”
Implementation of the CRPD in Canada is further complicated by the constitutional division of powers between the federal and provincial governments. Whereas the former negotiates international agreements on behalf of the country as a whole, the latter is often charged with the task of bringing them into effect in provincial law. The issue of legal capacity traditionally falls within the jurisdiction of the provinces for the purposes of implementation. There was extensive consultation between the provincial and federal governments during the negotiation of the CRPD.
Especially important for this project is Article 12, reproduced below. The implications of this provision for Ontario’s laws are considered as relevant throughout this Paper, but it should be briefly noted here that Canada entered a Declaration and Reservation with respect to Article 12, declaring its understanding that this Article permits substitute decision-making arrangements as well as those based on supports in appropriate circumstances. The Committee on the Rights of Persons with Disabilities has recently issued a General Comment setting out their interpretation of Article 12.
CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES: ARTICLE 12
1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.
The Charter of Rights and Freedoms
The Charter of Rights and Freedoms is, of course, fundamental law, applying to any body exercising statutory authority or pursuant to government objectives. Section 52 gives the Charter overriding effect, such that any law that is inconsistent with its provisions is, to the extent of the inconsistency, of no force or effect. Under section 24(1), anyone whose Charter rights or freedoms have been infringed or denied may apply to a court of competent jurisdiction to obtain such remedies as the Court considers appropriate and just in the circumstances.
The Charter guarantees civil and political rights, legal rights, language rights, expressive rights and equality rights. These rights are limited by section 1, which allows for such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society.
Section 7 of the Charter guarantees the life, liberty and security of the person, and the right not to be deprived of these except in accordance with the principles of fundamental justice. The right to liberty has been interpreted as including the right to make fundamental personal decisions, as well as freedom from physical constraint and interference with physical freedom. Thus, liberty includes the right to an irreducible sphere of personal autonomy regarding matters that “can properly be characterized as fundamentally or inherently personal such that, by their very nature, they implicate basic choices going to the core of what it means to enjoy individual dignity and independence.” Security of the person has been interpreted by the Supreme Court of Canada as including an individual’s “psychological integrity” where the interference is sufficiently serious.
The Ontario Court of Appeal applied a section 7 analysis to Ontario’s substitute decision-making scheme for consent to treatment in Fleming v Reid. The case involved two psychiatric patients who were not capable with respect to treatment, but who had expressed prior capable wishes regarding particular treatments and whose substitute decision-maker (SDM) was refusing to consent to treatment based on the prior capable wishes. The Court of Appeal found that the statutory provisions that at that time enabled the health care provider to override the prior capable wishes violated the right to security of the person under section 7, holding that
The right to personal security is guaranteed as fundamental in our society. Manifestly, it should not be infringed any more than is clearly necessary. In my view, although the right to be free from non-consensual psychiatric treatment is not an absolute one, the state has not demonstrated any compelling reason for entirely eliminating this right, without any hearing or review, in order to further the best interests of involuntary incompetent patients in contravention of their competent wishes. To completely strip these patients of the freedom to determine for themselves what shall be done with their bodies cannot be considered a minimal impairment of their Charter right. Safeguards can obviously be formulated to balance their wishes against their needs and ensure that their security of the person will not be infringed any more than is necessary.
The Charter also guarantees the equality rights of individuals. Specifically, section 15(1) provides for equality before and under the law without discrimination on the basis of a number of grounds, including age and mental or physical disability. Section 15(2) of the Charter shields laws, programs and activities that aim to ameliorate the conditions of disadvantaged groups or individuals, including those experiencing disadvantage due to disability or age.
The Ontario Human Rights Code
Under the “primacy clause” of the Ontario Human Rights Code (“the Code”) section 47(2), where a provision of an Act or regulation appears to require or authorize conduct that would violate the Code, the Code prevails unless the Act or regulation specifically states otherwise.
The purpose of the Code, as expressed in its Preamble, is to recognize the inherent dignity and worth of every person and to provide for equal rights and opportunities without discrimination. The provisions of the Code are aimed at creating a climate of understanding and mutual respect for the dignity and worth of each person, so that each person feels a part of the community and feels able to contribute to the community. The Code prohibits discrimination on the basis of age, as well as of disability, broadly defined, in the areas of employment, services, housing accommodation, contracts, and professional and occupational associations. Where it is necessary in order to ensure equal treatment without discrimination on the basis of age or disability, individuals have the right to accommodation to the point of undue hardship for needs associated with their age or disability.
There does not appear to be any domestic caselaw directly addressing whether or how the duty to accommodate may apply to decision-making supports. The Commissioner for Human Rights for the Council of Europe has recommended the creation of an explicit legal obligation for government and key institutions (such as health care and financial service providers) to “provide reasonable accommodation to persons with disabilities who wish to access their services. Reasonable accommodation includes the provision of information in plain language and the acceptance of a support person communicating the will of the person concerned”. The Ontario Human Rights Commission has noted, in the context of its work on mental health disabilities, the argument that to achieve true substantive equality, providing supports to help people make decisions should be recognized as part of an organization’s legal duty to accommodate under human rights laws.
The Accessibility for Ontarians with Disabilities Act
Also of relevance is the Accessibility for Ontarians with Disabilities Act (AODA), which has as its central purpose the recognition of persons with disabilities as a group that has experienced disadvantage and the removal of barriers in order to achieve their full equality and participation. The AODA requires organizations to take proactive steps across a range of areas to achieve accessibility and inclusion for persons with disabilities, including the removal of physical, attitudinal, technological, informational or communications barriers for persons with disabilities, with a goal of a fully accessible Ontario by 2025.
- QUESTION FOR CONSIDERATION: What do the principles and commitments found in the CRPD, Charter, Human Rights Code and AODA tell us about the key elements of reforms to of Ontario’s legal capacity, decision-making and guardianship laws? How might they affect the interpretation and application of these laws?
D. Legal Capacity, Decision-making and Guardianship Laws
The core of Ontario’s statutory regime for legal capacity, decision-making and guardianship is found in three statutes: the Substitute Decisions Act (SDA), the Health Care Consent Act (HCCA) and the Mental Health Act (MHA). These statutes are closely related and have significant areas of overlap.
The Health Care Consent Act
The HCCA governs consent to treatment in all settings, as well as decision-making related to admission to long-term care and personal assistance services in a long-term care home. It also establishes the Consent and Capacity Board (CCB) as an innovative mechanism for resolving disputes related to these issues. The purpose of the HCCA, as described in its opening section, is to
- Provide consistent rules for consent to treatment;
- Facilitate treatment, admission to care facilities and personal assistance services for persons lacking capacity to make decisions about these matters;
- Enhance the autonomy of individuals by providing procedural rights, permitting incapable persons to request that the CCB appoint a representative of their choice to make decisions on their behalf in the areas falling under the HCCA, and requiring respect for prior capable wishes of individuals;
- Promote communication between health practitioners and patients;
- Ensure a significant role for supportive families when a person lacks capacity to make decisions falling under the Act; and
- Permit the Public Guardian and Trustee (PGT) to intervene in decisions as a last resort.
Health practitioners may not administer treatment without consent, with narrow exceptions for emergencies. The HCCA sets a standard for capacity to consent to treatment, and the health practitioner proposing the treatment must assess whether the individual meets that standard. If the individual is not capable to make a decision regarding consent to treatment, the decision must be made by a substitute decision-maker, identified through a hierarchical list. The substitute decision-maker must comply with any prior capable wishes expressed by the individual, whether orally or in writing. Where no prior capable wishes exist, the HCCA sets out considerations which the substitute decision-maker must apply when making a decision on behalf of the individual; these include the values and beliefs the individual held while capable, current wishes, and the potential impact of the treatment on the individual’s well-being.
The HCCA also sets out processes for consent to personal assistance services provided in a long-term care home and to admission to long-term care. Capacity to consent for these decisions is assessed by “capacity evaluators”. Where capacity is lacking, the same hierarchical list of decision-makers and principles for decision-making as for consent to treatment come into play.
The HCCA creates the CCB as a specialized independent administrative tribunal. Among its powers, it can review determinations of incapacity by capacity evaluators (who assess capacity to consent to admission to long-term care), capacity assessors (who assess capacity under the SDA) and health practitioners (who assess capacity to consent to treatment), hear applications to appoint a representative for the purposes of substitute decision-making under the HCCA, provide directions to substitute decision-makers under the HCCA, and determine whether the substitute decision-maker is complying with their responsibilities under the Act. The CCB must begin hearings within seven days of receiving an application and render a decision within one day after the day that the hearing ends.
The Substitute Decisions Act
The SDA addresses decision-making related to property and personal care, which includes decisions regarding health care, nutrition, shelter, clothing, hygiene and safety. It sets out separate standards for legal capacity to make decisions about property and about personal care. Where a person does not have legal capacity to make decisions in one of these realms, decisions may instead by made by a person exercising a power of attorney, or by a guardian appointed for that purpose.
Under the SDA, individuals may create powers of attorney for property that take effect immediately and may continue to operate if the grantor becomes legally incapable (a “continuing power of attorney”), as well as ones which take effect on a specific date or when a particular event happens (a “springing power of attorney”). These powers of attorney may authorize the attorney to do anything that the grantor could do if capable, except make a will. Powers of attorney for personal care may not be continuing: they may only come into effect in situations of legal incapacity. A power of attorney may be in any form and does not require preparation by a lawyer, but the grantor must have the requisite capacity to give the power of attorney or to revoke it.
The SDA creates a class of designated “capacity assessors”, who may be requested to assess an individual’s legal capacity with respect to property. Where a person is found legally incapable with respect to property decisions by this assessment, the PGT becomes the statutory guardian for property, although there is an administrative process through which family members may replace the PGT. Guardians for property or personal care may also be appointed through direct application to the Court: in such circumstances, the PGT will only be appointed as guardian where there is no person suitable and willing to act.
The SDA sets standards for the activities and decisions of substitute decision-makers, including both guardians and attorneys. Substitute decision-makers must act for the benefit of the individual, honestly, diligently and in good faith, must encourage the individual to participate in decision-making to the best of his or her abilities, foster regular personal contact between the individual and supportive family and friends, and must consult from time to time with those supportive family and friends.
The Mental Health Act
The MHA applies to psychiatric facilities, and regulates voluntary and involuntary admission to these facilities, including setting standards for assessments to determine whether involuntary admission is required. It also sets out requirements related to community treatment orders, discharge, and access to personal health information within this setting.
Issues of capacity and guardianship are not the core focus of the MHA. However, some of the provisions of the MHA are central to this area of the law, particularly Part III of the Act, which requires, upon admission to a psychiatric facility, a prompt examination by a physician of the patient’s capacity to manage property. If the patient is found incapable, the physician must issue a certificate of incapacity to the PGT, who will assume management of the patient’s property. Where such a finding of incapacity is made, there is provision for rights advice and application to the CCB.
Also important are the complex intersections between consent to treatment under the HCCA and involuntary admission under the MHA. Unlike some other jurisdictions, Ontario sets separate standards for involuntary admission and for consent to treatment (although incapacity to consent to treatment under the HCCA is one factor in the test for involuntary admission) so that patients may be involuntarily hospitalized for considerable periods, while maintaining the capacity to refuse consent to treatment. This dual standard continues to be a source of considerable controversy. Involuntary admission is not a focus of this project, but is an important context to take into account in understanding the operation of this area of the law.
While the three statutes deal with different areas of decision-making or different settings, they embody a consistent approach to legal capacity, decision-making and guardianship. The following aspects of this approach are of particular importance in understanding the legislative regime:
- Presumption of capacity: Individuals are presumed capable to make their own decisions, and others are entitled to rely on that presumption unless there are reasonable grounds for believing otherwise.
- Cognitive and decision-specific approach to capacity: The test for capacity to make a particular decision is not whether the individual will make a wise decision, or whether the individual has a particular disability that may affect memory, understanding or reasoning, but whether the individual has the ability to “understand and appreciate” the relevant information. As is discussed at more length in Part Two, Chapter I.B, it is not necessary for the individual to actually understand and appreciate the information, but only that they have the ability to do so. Further, capacity is understood not as a global quality, but as particular to specific types of decisions: an individual may have capacity for some types of decisions and not others. He or she may also have capacity at some times and not others.
- Tendency towards a professionalized assessment of capacity: Capacity is in some important areas assessed by persons who have some specialized knowledge or experience in the areas. The SDA creates a class of “capacity assessors” who are required to have particular professional backgrounds and to meet certain training requirements. The HCCA similarly creates a class of “capacity evaluators” for decisions related to admission to long-term care and personal assistance services provided in a long-term care home, although these professionals must meet less rigorous requirements than assessors. Capacity related to decisions regarding treatment must be made by the health practitioner seeking consent.
- Substitute decision-making approach: Where an individual is found to lack capacity to make a particular decision or type of decision specified under the SDA or HCCA, and a decision must nonetheless be made, that decision must be made by a substitute, such as a guardian, individual acting under a power of attorney, or individual identified through a hierarchical list. Ontario’s statutory scheme makes no provision for supported or co-decision-making.
- Procedural rights: The reforms of the 1990s included provision of a number of basic procedural rights for persons potentially falling within these laws. For example, individuals examined for capacity to manage property under the MHA are entitled to rights advice. Capacity assessors must explain the purpose and significance of an assessment, and the individual has the right to refuse the assessment. Determinations of capacity may be reviewed by the CCB; as well, the affected individual may request a fresh assessment on a regular basis. Both the SDA and the HCCA include provisions for the appointment of counsel for persons whose legal capacity is at issue.
- Preference for the private realm: Ontario’s statutory regime encourages the use of family and friends as substitute decision-makers. The SDA makes powers of attorney relatively simple and inexpensive to create and to exercise, while the HCCA uses a hierarchical list of appointees, with the PGT acting only if no individual identified through that list is capable, of appropriate age, available and willing. While the MHA automatically creates a property guardianship by the PGT for incapable persons without a valid power of attorney, it also provides what was intended to be a relatively simple and inexpensive mechanism under the SDA through which family members can replace the PGT as guardians.
E. The Broader Legal Context
This section very briefly highlights some areas of the law with which Ontario’s statutory regime for capacity, decision-making and guardianship overlaps or frequently intersects. These will not be specifically reviewed as part of this project, but form part of the context in which the laws under reviewed as understood and implemented.
The Common Law
The common law remains an important element of the laws of capacity and decision-making, governing a wide range of issues, including capacity to marry, to make a will, to enter into contracts, to instruct counsel and others. The common law related to capacity and decision-making, while forming an important context for this project, is beyond its scope. However, it was the subject of a recent and comprehensive review by the British Columbia Law Institute. Capacity to instruct counsel will significantly affect access to justice for persons who fall within the scope of the SDA and HCCA. Issues related to capacity to enter into a contract will overlap with the provisions of the SDA related to management of property.
Laws regarding legal capacity, decision-making and guardianship frequently interact with privacy laws, and that interaction is often an area of confusion or concern. As was noted above, the MHA includes specific provisions related to personal health information and access to clinical records. The Personal Health Information Protection Act (PHIPA) regulates the collection, use and disclosure of personal health information, and provides individuals with a right of access to that information, as well as a means of requiring its amendment or correction. Personal health information includes identifying information about individuals that relates to individual’s mental or physical health, the provision of health care to individuals, plans of service under the Home Care and Community Services Act, payments or eligibility for health care, health numbers, or the identity of a substitute decision-maker. Many individuals affected by the HCCA will also fall within the PHIPA. PHIPA is consistent in its approach with the HCCA, including in its use of a cognitive approach to capacity, the use of substitute decision-makers, and procedural rights that include oversight by the CCB. As is discussed at greater length in Part Three, Chapter III and Part Four, Chapter I, banking institutions, as federally regulated businesses, fall under the Personal Information Protection and Electronic Documents Act (PIPEDA), and the PIPEDA provisions related to disclosure of information have significant impact on the response of these institutions to concerns about potential financial abuse.
Laws Regulating Social Services and Supports
Laws related to social services and supports, particularly those that are targeted to older adults or persons with disabilities, also frequently address or interact with issues related to capacity and decision-making. Most significantly, income support programs such as the Ontario Disability Support Program (ODSP) and Old Age Security (OAS), as well as the Canada Pension Plan (CPP), provide support to groups that are disproportionately likely to fall under capacity, decision-making and guardianship law, and have “trusteeship” provisions that enable third parties, most frequently family members, to manage funds on behalf of the individual, where a functional evaluation indicates that this is required.
In understanding the practical operation of Ontario’s legal capacity and guardianship laws, it is also important to take into account their interaction with laws governing long-term care as there is considerable intersection in terms of the populations served. According to recent figures, 73 per cent of the residents of Ontario’s long-term care homes have a mental disorder, including Alzheimer’s or other form of dementia, and 31 per cent have severe cognitive impairment. The HCCA explicitly addresses capacity to consent to admission to long-term care as a specific domain of decision-making. There is therefore a significant and important interaction between the provisions of the Long-Term Care Homes Act, 2007 and capacity and guardianship laws. Long-term care homes have developed a range of policies and protocols intended to address issues of capacity and substitute decision-making.
Similarly, persons with some kinds of impairments or disabilities are more likely to make use of some types of social supports and programs. The Social Inclusion Act, for example, is specifically targeted to individuals who have life-long and early developing limitations in their adaptive and cognitive functioning. It aims to provide services and supports to these individuals in the areas of residential services, activities of daily living, community participation, caregiver respite, professional and specialized services, person-directed planning and other areas. That is, this statute creates a scheme for the provision of fundamental supports and services to individuals who are disproportionately likely to fall within the scope of capacity and guardianship legislation. The supports and services provided through the Social Inclusion Act may affect the context and supports available to them in making decisions, and the provisions of capacity and guardianship law may affect how they are able to access services under that Act.
- QUESTION FOR CONSIDERATION: Are there specific reforms to the Substitute Decisions Act or Health Care Consent Act that would support better coordination with other laws, such as the Mental Health Act, privacy laws, income or social support laws or others?
F. Understanding the Context in Which the Law Operates
To evaluate how well a law is working, it is important to understand whom it affects, and the areas of life on which it impacts. The laws of legal capacity, decision-making and guardianship have a very broad impact on Ontarians. As the brief description of the law above indicates, most people will encounter this law at some point in their lives, whether through their professional responsibilities, as a person with a disability or someone planning for a future in which legal incapacity is a possibility, or as a family member or friend who must act for someone who has been found to lack legal capacity and requires assistance with decision-making. The following sections give a brief overview of the circumstances and contexts for those affected by the law, thereby assisting us in understanding how the law operates in practice.
1. Who Is Affected by the Law?
Neither the SDA nor the HCCA specifically refers to any particular class of persons. The SDA provides mechanisms for the appointment for an SDM for any person who is or may be determined to be “incapable” within its provisions and requires decision-making assistance . The HCCA applies very broadly to any person whose consent is required for treatment, admission to a care facility or with respect to personal assistance matters. Particularly with respect to treatment matters, any citizen of Ontario who falls ill may potentially find themselves not meeting the standard of capacity for consent to treatment: in such circumstances the HCCA provides mechanisms for the appointment of and guidance for the decisions by SDMs.
However, it is clear that some persons will be more likely to be found legally “incapable” under one or the other of these statutes. Persons with developmental, intellectual, neurological, mental health or cognitive disabilities are both more likely to be found legally incapable to make specific decisions within the definitions of these statutes, and to be informally assumed to be incapable and therefore subject to assessments and other provisions of the statutes. Because older persons are disproportionately affected by some types of cognitive disabilities, older persons may also be disproportionately affected by this area of the law.
It is important to note that, while persons with disabilities will have in common the experience of attitudinal, systemic and other barriers to equality, their experiences may significantly differ in many ways. The stage in the life course at which impairment is incurred; the type of stigma and negative attitudes associated with a particular disability; the way in which the disability affects employment, housing or personal relationships; the way in which it intersects with other aspects of identify, such as age or gender or racialization – all of these will affect the experience of particular groups of persons with disabilities and how they encounter the law related to legal capacity, decision-making and guardianship. There will be both commonalities and differences in experiences with and attitudes towards this area of the law by those most immediately affected, and these differences and commonalities must be taken into account when analyzing current laws and developing law reform options.
There are little empirical data available regarding the application of the SDA and the HCCA. For example, powers of attorney are private matters: there is no mechanism for tracking how many powers of attorney have been created, how many are in effect, or who is affected by them. Similarly, the provisions under the HCCA setting out a hierarchy of SDMs for consent to treatment are not easily amenable to tracking.
The following sections do not pretend to provide a full description of the characteristics of the various groups that may be affected by the laws of capacity, decision-making and guardianship: this would require a book of considerable length. Rather, they highlight some of the key aspects of the experiences of these groups that may shape the way in which they experience this area of the law.
In any consideration of the experiences of older adults or persons with disabilities, attention must be given to the immense diversity within these groups, and the effect that diversity has on their experiences of any law, practice or policy. For example, gender dynamics will have a profound influence on the experience of persons with cognitive, mental health or intellectual disabilities with substitute decision-making, as will cultural patterns and assumptions. Persons who are LGBT may have particular concerns with the default assumptions towards biological families in the HCCA hierarchical list of decision-makers and the SDA replacement guardian provisions. Linguistic minorities may have additional barriers in accessing information about their rights and obtaining meaningful assessments of their legal capacity.
It should be noted that there is ongoing discussion and debate about the language used to describe persons with particular disabilities and their experiences. The LCO recognizes that there is a range of views about the most appropriate language. The LCO does not intend its use of particular terms to be construed as definitive, and recognizes that persons with disabilities themselves are in the best position to identify the most appropriate language.
- QUESTION FOR CONSIDERATION: How does the experience of this area of the law differ depending on gender, sexual orientation, gender identity, racialization, immigration status, Aboriginal identity, family or marital status, place of residence, geographic location, language or other forms of diversity?
Loss of Capacity Due to Illness
One group that is commonly affected by capacity and decision-making laws but that is extremely amorphous in its makeup, is that of persons who temporarily lose legal capacity to make decisions in the context of treatment for an acute illness, whether brief or over a longer term. Illness or disease such as stroke or progressive neurological diseases may of course result in a long-term disability, but for many, a temporary period of extreme illness may bring them under the provisions of the HCCA for a short period of time, without the necessity for more significant engagement with legal capacity and guardianship law. Anyone, in any stage or condition of life, may find themselves in these circumstances. Where this occurs at the end of life, loss of legal capacity may necessitate sometimes agonizing decisions by substitute decision-makers, in circumstances of extreme emotion and often under time pressure.
Persons with Intellectual and Developmental Disabilities
The incidence of developmental or intellectual disabilities is relatively small: Statistics Canada’s 2006 Participation and Activity Limitations Survey (PALS) found approximately 0.5 per cent of Canadians age 15 or older living with a developmental disability, defined as “Cognitive limitations due to an intellectual disability or developmental disorder such as Down’s syndrome, autism or an intellectual disability caused by a lack of oxygen at birth”.
There is a range of experience within this category: the experiences of individuals with autism may differ very considerably from those of a person with Down’s syndrome for example, and there may also be very considerable variation in experience within each type of disability. Certainly, not all persons with intellectual or developmental disabilities will fall within the capacity and guardianship laws, although they may be subjected to limiting presumptions about their abilities.
A key element in the experience of persons with intellectual or developmental disabilities is that these disabilities will be identified at birth or during early childhood. The experience of disability will follow these individuals throughout their lives, substantially influencing their access to education and employment, and shaping their personal relationships, expectations and opportunities.
Historically, the lives of persons with intellectual disabilities were limited by negative and limiting societal attitudes:
Society’s treatment of people with intellectual disabilities can be captured by the common terminologies that were used to describe them, including “imbeciles”, “idiots”, the “feeble-minded” and “morons”. The medical community restricted its examination of people with intellectual disabilities to the “degree of idiocy” suffered by the individual. This language illustrates that people with intellectual disabilities were considered different than “normal” people, consequently it was acceptable to treat them differently. Such treatment was almost always accompanied by stereotypes about abilities (or lack thereof), and in particular, the assumption that people with disabilities were unable to lead independent lives.
These attitudes resulted in extreme restrictions on the autonomy of persons with intellectual disabilities, including institutionalization and forced sterilization.
Persons with milder developmental disabilities may now live as long as the general population. This means many will outlive their parents, who are often primary care givers. Deinstitutionalization of persons with developmental disabilities and population aging have given rise to situations where parents in their eighties and nineties are still primary care providers for their developmentally disabled adult child in who is now in late middle age. The death of or onset of disability for these parents may result in a loss of crucial supports for these individuals.
Persons with intellectual or developmental disabilities are particularly likely to experience low-income. Accordingly to PALS 2006, the median income for persons with a developmental disability age 15 and older was $10, 415, the lowest for all categories of disability, and as compared to a median income of $27,496 for persons without disabilities. While persons with developmental disabilities do face barriers to employment, they are more frequently employed than in the past. In 2006, the unemployment rate for persons with disabilities was approximately 9 per cent. However, persons with developmental disabilities usually find themselves on the lower end of the pay spectrum. This means that if they collect employment insurance or pension payments, which are based on the level of income, they receive lower payments.
Persons with developmental disabilities often have few opportunities to make decisions for themselves, which may limit the capacity for self-determination and lead to unnecessary dependency. Adults and children with developmental disabilities are not only at greater risk of abuse and neglect, but face a range of barriers to getting help where abuse occurs, including their complaints not being understood or believed; or the failure to educate individuals with developmental disabilities about appropriate behaviours so that they may not recognize abuse when it occurs.
Older Persons and the Late-in-Life Development of Cognitive Disabilities
It is important not to conflate aging with disability: many older adults consider themselves to be and are in very good or excellent health. However, aging is generally associated with a decline in health and the onset of some types of activity limitations. Of particular interest for this project is the association between aging and the development of certain types of cognitive disabilities.
Alzheimers’ disease and other forms of dementia are relatively rare at any age, but the risk increases significantly with age. In 2008, 7 per cent of Canadians age 60 and older lived with some degree of dementia, while 49 per cent of those over age 90 do so. As the population continues to age over the next 30 years, issues related to consent, capacity and decision-making are likely to become more pressing. As noted above, the Alzheimer’s Society of Canada recently released a report estimating that the prevalence of dementia will more than double over the next 30 years, up from 1.5 percent of Canada’s population in 2008 to a projected 2.8 per cent of the population in 2038.
It is often popularly assumed that older age is synonymous with poor health and cognitive decline. For example, forgetfulness is often referred to as “having a senior moment”. During the LCO’s consultations for its project on the law as it affects older adults, many participants raised concerns about the tendency of service providers to assume incapacity on the part of an older person and to defer to younger family members or even to fail to address the older person at all. Combined with the tendency toward paternalism in the treatment of older persons, with the assumption that they are less capable of exercising their autonomy and in more need of protection, these assumptions mean that capable older adults are at some risk of being assumed to be incapable or of being treated as if they are incapable.
The experiences of those who have developed disability later in life are likely to differ in some significant respects from those who have lived with a disability throughout their lives. For example, older adults who have not experienced disability prior to the onset of older age are likely to have accumulated some assets, such as a pension, some savings or a house. Certainly not all older adults are wealthy or well-off: many live on limited incomes. However, their assets will influence the dynamics of their access to justice and of their interpersonal relationships. For example, one of the most common types of abuse of older adults is financial abuse: the assets of older adults, however modest, may create a significant temptation to abuse once an older person becomes in some way vulnerable, and the fact that substitute decision-makers may also expect to be beneficiaries of an estate may create conflicts of interest.
The vast majority of older adults – 93 per cent – live in private households. “Aging in place” is the goal of the vast majority of older adults; they wish to remain in their homes and communities for as long as possible. However, as age increases, so does the likelihood of living in a congregate setting, such as a retirement home or long-term care home: approximately one-third of individuals over the age of 85 live in such a setting. As was noted earlier in the Chapter, persons with dementia make up a very significant percentage of those living in long-term care facilities. While long-term care homes are homes, they are also institutions: they are heavily regulated, populated by individuals who are by definition vulnerable, removed (to greater and lesser extents) from the larger community, and under significant resource pressures. This is also true to a lesser and variable degree for persons living in retirement homes. Persons living in congregate settings experience particular barriers to access to justice that differ from those for individuals living in the community. As a result, those who live in congregate settings will have a significantly different experience of the laws of capacity, decision-making and guardianship. And of course, the HCCA creates a specific system for assessing capacity in relation to the decision to transition into a long-term care home.
Where older persons develop activity limitations or disabilities, their caregivers are most likely to be their spouses or their adult children. The caregiving dynamic is therefore somewhat different than for younger persons with disabilities, where supports may be provided by parents or siblings. Some have commented on the disorientation and difficulties that may be experienced when adult children provide care for individuals who once provided care and were authority figures for them. As families are increasingly geographically scattered, the provision of care and supports from adult children to parents may become increasingly challenging.
As lifespans extend, as more adults divorce or remain single throughout their lives, and as individuals have fewer or no children, and as families become more geographically dispersed, the number of individuals who have no family member or close friend who is both willing and able to provide supports or act as a substitute decision-maker continues to grow. Given the heavy reliance of Ontario’s capacity, decision-making and guardianship law on unpaid caregivers and the nature of the work Public Guardian and Trustee as a government service and an organization of last resort, this trend is likely to pose a challenge to the system.
Persons with Mental Health Disabilities
Mental health disabilities encompass a wide range of conditions of greater and lesser severity, only some of which will result in impairments to the ability to understand information and to appreciate the risks and benefits of various courses of action.
Mental health disabilities differ from other types of disabilities that may affect capacity in that they are often episodic, as compared to intellectual disabilities which tend to be stable and cognitive disabilities associated with later life which tend to be progressive. The episodic nature of mental health disabilities has a number of consequences for the experience of capacity and guardianship law. Persons with mental health disabilities may cycle in and out of the capacity and guardianship system. They may need considerable supports and interventions at some periods, and relatively little or none at others. As a result, any lack of flexibility in processes for entering into and exiting from the capacity and guardianship system will have a particular impact on these individuals. Significant costs or slow and difficult processes may prevent individuals from accessing supports when they need them or in regaining their full autonomy when they are ready to do so. The episodic nature of mental health disabilities also means that some persons with mental health disabilities may have the opportunity and ability to gain considerable insight into their disabilities and to identify what does and does not work for them. Advance care planning may be particularly valuable for these individuals: having experienced a range of treatments, they may be able, while they are capable, to identify what was and was not positive and develop meaningful plans for those times when they are not capable. As well, the episodic disabilities may affect family and treatment dynamics.
Of course, for some persons with mental health disabilities who find themselves falling within the provisions of the Mental Health Act, the experience of the legal capacity, decision-making and guardianship system will be heavily influenced by the provisions of that legislation, including requirements related to involuntary admission and community treatment orders. Persons with mental health disabilities are subject to heavy stigma. The Ontario Human Rights Commission (OHRC) conducted very extensive consultation in the development of its Minds That Matter report, and heard many concerns from persons with mental health disabilities about the stigmas and stereotypes that they face:
Some submissions told of being considered a security risk based on assumptions about their disability. Where there is no real evidence of risk, this type of behaviour may be a form of “profiling” based on mental health. For example, one service provider was concerned about hospitals that routinely called security personnel to be present if patients’ files revealed a mental health diagnosis.
Other stereotypes about people with mental health disabilities or addictions are that they lack credibility, are not able to accurately assess situations, and cannot make decisions about their own lives….
People said that pervasive paternalistic attitudes devalue their experiences, thoughts and choices, and lead to society having low expectations of people with mental health issues or addictions. It is hard to complain or assert yourself or your rights because your experiences are minimized and attributed to your disabilities, we were told.
The evidence with respect to the association of mental health disabilities with violence is complex, and of course varies with the particular type of disability. As the OHRC has noted, the concern that persons with mental health disabilities may do harm to themselves or to others is a significant force in the perceptions of persons with mental health disabilities and in the public perception of justifications for limitations on the autonomy of these individuals.
A disproportionate number of persons with mental health disabilities experience low-income. This is a result, not only of the effects of their disabilities, but also of the results of stigma and discrimination. Unemployment and underemployment, lack of access to safe and affordable housing and to appropriate educational opportunities may all contribute to poverty among persons with mental health disabilities, as well as exacerbating their illness and reducing the options that they have available to them in terms of housing and services. As well, as is highlighted elsewhere in this Paper, low-income = creates barriers to access to justice.
Persons with Acquired Brain Injuries
Compared to other groups affected by capacity and guardianship law, there is relatively little information available about persons with acquired brain injuries and their experiences with this area of the law.
Information about the number of Ontarians living with an acquired brain injury is difficult to come by, particularly since the available data use varying terminology, and may include individuals with mild brain injuries or those who die as a result of their injuries. The Ontario Trauma Registry 2012 Report reported 2,637 traumatic brain injury hospitalizations in the reporting year 2010-2011. Of these, 58.4% were diagnosed as mild, 6.1 per cent as moderate, 10.4 percent as severe, and 25.2 per cent as unknown or inappropriate (for whom there was not enough information available).
Injuries and their effects will vary widely, of course. The Canadian Institute for Health Information reports that
Head injury may affect memory, mood, communication, mobility, concentration and problem-solving, and cause impulsivity, loss of control of anger, emotional instability and depression. . . . Individuals with head injury may have physical disabilities, such as paralysis of the limbs or loss of vision and/or hearing, while some may lose the sense of smell, suffer from headaches or have seizures.
A survey by the Ontario Brain Injury Association of 596 individuals living with a brain injury found that 95 per cent had trouble with their memory, 93 per cent had trouble concentrating, and 91 per cent had trouble making decisions, 80 per cent experienced anxiety, and most reported depression, trouble controlling their anger and mood swings.
Acquired brain injuries may have a significant effect on functioning and on participation: the survey mentioned above found that while 75 per cent of the respondents had been employed for pay prior to their accident, only 13 per cent were so engaged afterwards. A brain injury may have a significant impact on family finances, circumstances and relationships.
- QUESTION FOR CONSIDERATION: What reforms to the law in this area are needed to ensure that it takes into account the characteristics of affected older persons and persons with disabilities?
G. The Role of Family and Friends
Ontario’s current statutory regime for legal capacity, decision-making and guardianship gives priority to family and friends to act as substitute decision-makers where they are needed, whether as guardians, or through powers of attorney or the HCCA hierarchical list. Systematic information is not gathered about substitute decision-makers in Ontario: it is impossible to know how many private individuals are currently or have in the past acted as substitute decision-makers, what their relationship is with the person for whom they are acting, or much about how they experience that role.
There is likely some significant overlap between persons who act for others under the HCCA and SDA, and those who provide unpaid caregiving supports for older adults and persons with disabilities: both types of supports arise out of the same context of intimate, interdependent caring relationships. In many cases, the same individual(s) will be acting as both unpaid caregiver and substitute decision-maker. The roles of substitute decision-makers are highly significant, responsible and potentially quite stressful, as well as subject to substantial legal regulation. These roles may have a significant effect on their life courses, and the law will certainly shape how they carry out those roles. The ways in which laws either support or create barriers for persons providing unpaid supports will have a substantial influence on the effectiveness with which these individuals are able to provide supports to those who do fall under capacity and guardianship law.
It is important not to place these roles in a negative light. Research on unpaid caregivers has found that most of those in these roles take them on because they wish to do so, find meaning in them, and do not experience their relationships with those to whom they provide care as “one-way”. However, at the same time it is essential to acknowledge that unpaid caregivers may be carrying out their roles under conditions of difficulty and may perceive that they are receiving insufficient supports in carrying out what is a vital function. For example, a recent study by the World Health Organization and Alzheimer’s Disease International found that primary caregivers may experience significant strain in terms of time pressures, the challenges of responding to behavioural or cognitive symptoms, and managing multiple roles. These caregivers tend to be prone to depression and anxiety, as well as social isolation. When caregiver resources and wider network are overwhelmed, this can result in mental and physical health issues. Where insufficient supports are provided, informal networks may collapse under the strain, resulting in institutionalization for persons with a disability.
The roles of substitute decision-makers are challenging, often requiring difficult ethical, practical and emotional choices. This is particularly true where, as commonly happens, the substitute decision-maker is also providing care and support. Any close personal relationship brings with it complex histories, dynamics and interdependencies, and these will influence the way in which families carry out any role in decision-making. In some cases, these dynamics will be clearly inappropriate or abusive. In many cases, it may be more apt to refer to misuse of the role, rather than abuse. Family members may believe that they are acting out of love and concern, but still be inappropriately exercising power and denying autonomy to the individual concerned.
In a paper prepared for the LCO, Laschewicz et al examine the ways in which families may either facilitate the voices of members with developmental disabilities, or obscure those voices. Families may be extremely effective in supporting the voices of members with disabilities, for example, by making space in the conversation, reinforcing ideas that are expressed, and prompting the expression of new ideas. On the other hand, families may also inadvertently repress those voices. In part, parents of adult children with developmental disabilities may simply fail to evolve their ideas of what their adult children can do and decide, and continue to attach to them a “young chronological age”. In other cases, these adult children will have developed habits of passivity and compliance, so that they hesitate to express their desires or to attempt to make their own choices. As well, parental caregivers who have had to shape their lives and identities around their advocacy for their children may be reluctant to abandon this ingrained and symbiotic lifestyle. In one case study, a sibling of an adult with a developmental disability indicates that because their mother has not had an opportunity to develop her life outside of her caregiving identity, she is threatened by any indication that her daughter could function successfully in any other arrangement. The sibling believes that his sister’s potential for independence is constrained by his mother’s long established caregiver identity. The mother presents herself as an authority on her daughter’s needs to the extent that her daughter’s voice about her own needs is often overridden or ignored.
It is therefore important to take a balanced view of family involvement in decision-making, keeping in mind the variable and shifting nature of these dynamics.
H. Contexts in Which the Law Operates
Issues of legal capacity and decision-making potentially affect almost every area of life. However, the statutory regime with which this project is concerned is focussed on five core areas: property management, health care (“treatment”), personal assistance services provided in a long-term care home, admission to long-term care and personal care, which includes issues related to housing, nutrition, safety, clothing and hygiene. Together, these areas touch on almost every aspect of life, highlighting the potentially profound impact of these laws on individuals to whom they are applied.
Most of these areas involve decisions which may be complex, fundamental and life-changing, as well as decisions which are relatively routine and everyday decisions. The routineness of a decision may not dictate its importance to an individual: the everyday decisions about what to eat or to wear are intimately connected to our identity, and may shape our lives as much as major decisions about where to live, for example.
The dynamics of decisions in these various domains differ in significant ways. Admission to long-term care is a single decision (albeit subject to re-visitation), though one with life-altering consequences; property management generally requires ongoing, multiple decisions. Treatment decisions tend to involve some degree of urgency, while other types of decision-making will more frequently permit a greater degree of deliberation. Some types of decision-making take place almost entirely in the private realm – this will frequently be the case for day to day decisions about property management and personal care – while other decisions, such as those regarding treatment or admission to long-term care, will necessarily involve professionals and potentially institutional service providers, so that there is some accompanying level of public scrutiny.
Reflecting these differences, Ontario’s legal capacity, decision-making and guardianship laws treat these decision-making domains differently in many important respects. For example, substitutes for decisions about treatment, admission to long-term care and personal assistance services provided in a long-term care home may be identified relatively expeditiously through the HCCA’s hierarchical list of substitutes, while the process for identifying substitutes for personal care and property management is more complex. Substitutes for treatment decisions are authorized through the list for that particular decision, while substitutes for personal care and property management are appointed on a longer-term basis. The test for capacity to create a power of attorney for personal care is much less rigorous than that for a power of attorney for property. These and other differences reflect an effort by the legislature to respond to the particular contexts of decision-making.
However, it is also true that in practice, decision-making in one area is likely to have significant effects on other areas. Decisions about admission to long-term care, for example, are likely to have significant implications for financial and property matters. The person who is making day-to-day decisions about money is likely to have considerable de facto control over an individual’s personal life. The SDA attempts to promote coordination between the domains. For example, guardians or attorneys for property must manage a person’s property in a manner consistent with decisions concerning the individual’s personal care that are made by the person who has authority to make those decisions, and must consult from time to time with those who provide personal care to the individual.
I. Pressures for Reform
As is illustrated by the brief history and outline of Ontario’s capacity and guardianship laws provided above, these laws are comprehensive, of relatively recent origin, and were the result of careful and extensive research and consultation. Nevertheless, as was discussed in the Introduction and was notable in the LCO’s preliminary consultations, there is considerable interest in and pressure for law reform in this area. There are a number of reasons for this.
As was briefly noted above, this is an area of the law that raises complex and difficult ethical, social and legal questions. It is closely tied to broader concerns related to the rights and treatment of older persons and persons with disabilities, the role of government and individual and familial responsibilities, the operation of Ontario’s healthcare system and many other issues. The challenges that underlie this area of the law are not easily solvable, or at least are not solvable by solely legal mechanisms. No legal mechanism related to legal capacity, decision-making and guardianship will ever completely resolve the competing needs, experiences and interests that it attempts to address: this is an area of the law that will likely always be subject to some challenge and controversy.
There are, however, some trends and pressures that are increasing current levels of interest in this area of the law. Demographic trends are one such factor. It is not novel to note that we live in a rapidly aging society. The proportion of Canada’s (and Ontario’s) population that is over age 65 is increasing, and the population over age 85 is doing so particularly rapidly: as a result, there is an increasing prevalence of dementia and other illnesses and disabilities related to aging that may affect cognitive functioning. Less well noted is the increasing prevalence of individuals who identify as having a disability: this increase is partly but not wholly associated with the aging demographic. The end result is that a growing number of individuals and families are directly affected by this area of the law.
At the same time, attitudes towards aging and towards disability are undergoing a profound shift. The experience of disability, once conceptualized almost wholly through a biomedical model, is increasingly understood through social and human rights lenses, shifting the emphasis from individual impairment to social and environment barriers to full participation. Paired with this has been a growing disability rights movement, aimed at empowering and bringing equality to persons with disabilities. A similar, though less marked shift has affected the experience of aging and older age, with an increasing emphasis on positive aging, age-friendly communities and elder rights. Laws related to capacity and guardianship are being reviewed through new perspectives, with an increasing emphasis on due process, advocacy and supports, and self-determination. These trends are not confined to Ontario (or Canada), and are related to a wave of interest and reform across Canada and around the world. The creation of the CRPD, and in particular Article 12 as described above, was both a result of and a spur to interest in reform to this area of the law.
Complicating these trends are the acute pressures exerted by resource shortages at all levels. While there is greater need in these areas and growing calls for increased rights and supports, there is considerable constraint in Ontario government finances, healthcare and legal systems, social services, families and at the individual level. The resources required to make the current system work optimally, or to make substantial transformations to the system, are in short supply. Some (though certainly not all) of the shortcomings of the current statutory framework can be attributed to the effects of resource pressures at these multiple levels. Law reform in this area must take these pressures into account, identify creative solutions, seek to maximize existing resources and ensure that they are used as efficiently as possible, and apply the concept of progressive realization to make the maximum progress within existing limitations.
Finally, the current statutory framework marked a profound transformation in Ontario law. As carefully thought out and coordinated as it was, there have been unintended or unanticipated results in some areas. For example, the dispute resolution mechanisms currently available where families disagree over the exercise of substitute decision-making were not designed to manage bitter and protracted family conflicts that may resemble those found in family law. There was a focus in previous reform on making powers of attorney widely accessible, for example, through the forms available on the Ministry of the Attorney General website; however, during the LCO’s preliminary consultations, many of those interviewed raised concerns that individuals completing powers of attorney do not fully understand the ramifications of these powerful legal instruments, and that this may be a factor in the financial abuse of vulnerable individuals.
The LCO’s extensive preliminary consultations revealed widespread agreement regarding the need for reform. There was general consensus on some priorities for reform, but significant divergence on other issues.
Many felt that the fundamental approach of the current legislative framework is, at its core, sound, but raised concerns about the extent to which the legislation’s foundational principles and basic rights are being meaningfully implemented. In particular, concerns were raised regarding:
- Failure of substitute decision-makers to understand and respect their roles and responsibilities under the statutes;
- Failure on the part of some institutional services and professionals to adequately understand the law and carry out their statutory responsibilities; of particular concern is the adoption by some institutions of policies and practices that do not comply with the law, raising systemic issues;
- Inadequate mechanisms to prevent, identify and address abuse and misuse by substitute decision-makers;
- Complexity and multiple barriers to users in understanding and navigating through the law and the system: this was a concern both for individuals and service providers;
- Challenges in adequately addressing the experiences of persons with fluctuating or evolving levels of capacity.
In these areas, the desire was for law reform that could advance the effective implementation of current laws. Two areas for potential fundamental transformation in approach were identified.
- While most consultees raised concerns that current provisions of the law intended to protect the autonomy of individuals affected and to keep these individuals “at the centre” were not being adequately respected, some saw the answer to these shortfalls in respect for autonomy not in improvements to existing approaches, but in a transition away from substituted decision-making towards a supported decision-making model (some also pointed to possibilities related to co-decision-making).
- There was widespread significant desire for a fundamental re-thinking with regards to rights enforcement overall, as well as with dispute resolution mechanisms under the SDA where resolutions are perceived to be excessively costly, complex and adversarial, and therefore to be inaccessible on a practical basis to many of those who need them.
J. Applying a Principles-Based Approach to Law Reform in This Area
In understanding this area of the law and identifying law reform options, it is essential to pay careful attention to the lived experience of individuals who fall within the law, as well as their family members and caregivers, and the professionals who work within the different aspects of the system. As the Frameworks emphasize, it is also helpful to situate the issues within a set of principles: this can help us to understand how current law, policy and practice affect substantive equality for older adults and persons with disabilities, and to identify how law reform could advance substantive equality for these groups.
The impact of the statutory regime for legal capacity, decision-making and guardianship is potentially very broad, keeping in mind that it affects not only those individuals who are found to lack capacity (who will disproportionately be older or persons with particular types of disabilities or both), but also those groups who are perceived to be more likely to lack legal capacity as they will be more likely to have their capacity to make decisions actually questioned. It is important to note that these are groups that tend to be vulnerable or marginalized, facing disproportionate levels of stigma and socio-economic challenges. For those directly affected, the law potentially impacts on almost every area of life, affecting decisions both large and small related to place of residence, finances, health care and other support services, and daily decisions about such matters as clothing, hygiene and food. The impact is both intimate and profound. This area of the law will therefore have significant impact on respect for the dignity and worth of persons with disabilities and older adults, and on their ability to fully participate in and be included by the broader society.
The implications of particular principles for specific law reform issues will be explored more fully throughout the remainder of this Paper. However, it is important to note from the outset that decision-making, and therefore determination of capacity to make decisions, is clearly closely tied to the principle of autonomy. As the Framework for the Law as It Affects Older Adults states, the principle of autonomy recognizes “the right of older persons to make choices for themselves, based on the presumption of ability and the recognition of the legitimacy fo choice”. The parallel principle from the Framework for the Law as It Affects Persons with Disabilities further emphasizes “the creation of conditions to ensure that persons with disabilities are able to make choices for themselves” [emphasis added]. It should be noted here that in both Frameworks, the LCO has defined the principle of autonomy and independence in a way that recognizes that humans are by their nature interdependent and acknowledges that we may require supports in order to achieve autonomy and independence.
Laws relating to legal capacity, decision-making and guardianship have their inception, in part, in a concern to avoid abuse or exploitation of individuals whose ability to receive, retain or understand information is limited, and who are therefore more vulnerable to manipulation or deceit. The Framework for the Law as it Affects Persons with Disabilities recognizes a right to live without fear of abuse or exploitation and where appropriate to receive support in making decisions that could have an impact on safety. The Framework for the Law as it Affects Older Adults recognizes a right to be free from physical, psychological, sexual or financial abuse or exploitation.
In the literature about this area of the law, this right to live in safety/security is often positioned in tension with the principle of autonomy highlighted above. In considering these issues, it is important to acknowledge that the notions of autonomy and security are themselves complex and are interdependent. There are also risks to the security of individuals where legal structures or other barriers reduce opportunities for individuals to express their needs and wishes, and thereby create opportunities for abuse or exploitation by unscrupulous third parties. Depending on how laws related to decision-making are structured and implemented, they may either increase or reduce personal safety and security. And lack of safety and security can affect the ability to express autonomy and independence: individuals who are subject to abuse or exploitation may find that not only their security and safety are compromised, but also their freedom to make choices and live as they will. That is, autonomy and security are not necessarily at opposite poles: frequently, they are intimately connected, so that one cannot be achieved without the other.
Both Frameworks include principles related to diversity, which highlight the importance of recognizing not only the particular characteristics, needs and circumstances of older adults and persons with disabilities, but also the diversity among older adults and persons with disabilities. The brief discussions in this Chapter of the ways in which older persons and persons with various types of disabilities may encounter this area of the law make clear that may experience this law very differently. Differences in the nature of their impairments, their life courses, their socio-economic status and their access to various types of supports mean that they may need different things from the law, and that a provision that may have helpful implications for one group might have a negative impact on another.
Finally, the Frameworks include principles that highlight that all members of society have reciprocal rights and obligations to each other. Laws related to decision-making must recognize that those directly affected have not only rights but obligations to others, and support the fulfillment of those obligations. As well, the law must take into account the needs not only of those directly affected, but those surrounding them, including family and other unpaid carers, recognizing that we are all interdependent.
- QUESTION FOR CONSIDERATION: What do the Framework principles tell us about designing effective reform for this area of the law?
K. Questions for Consideration
- What should be the primary purpose or purposes of this area of the law?
- What do the principles and commitments found in the CRPD, Charter, Human Rights Code and AODA tell us about the key elements of reforms to Ontario’s legal capacity, decision-making and guardianship laws? How might they affect the interpretation and application of these laws?
- Are there specific reforms to the Substitute Decisions Act or Health Care Consent Act that would support better coordination with other laws, such as the Mental Health Act, privacy laws, income or social support laws or others?
- How does the experience of this area of the law differ depending on gender, sexual orientation, gender identity, racialization, immigration status, Aboriginal identity, family or marital status, place of residence, geographic location, language, various forms of disability, or other forms of diversity? What reforms to the law in this area are needed to ensure that it takes into account the characteristics of affected older persons and persons with disabilities?
- What do the Framework principles tell us about designing effective reform for this area of the law?
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