III. The Law and Care in the Last Stages of Life

////III. The Law and Care in the Last Stages of Life
III. The Law and Care in the Last Stages of Life2017-05-29T01:08:35+00:00

A.    Introduction

This project addresses complex systems for planning and delivering health care in Ontario. During the LCO’s consultations several stakeholders, especially in the medical field, asked the LCO to explain how law reform is relevant to what they perceive to be medical, administrative or public policy issues.

In this chapter, we explain the law’s contributions to governing the health care sector. We begin by exploring nuanced definitions of what the law is. Then, we discuss fundamental legal rights and principles that must be adhered to in delivering health care and the law’s interaction with professional standards of care.

The purpose of this chapter is to clarify the law’s expansive reach, but also its limits, and the LCO’s approach to law reform.

In contrast, the next chapter of this paper provides detailed information on Ontario’s existing law, policy and institutional framework specific to care in the last stages of life (including key government agencies and health care benefits).

B.    Defining “Law”

1.      The LCO’s expansive understanding of the law

The LCO has an expansive definition of the “law”, which includes legislation and case law as well as the policies, institutions and everyday practices necessary to implement the law on the ground. Understood in this way, the law can assume various forms and it can be enforced and shaped by many actors.

To begin, the law includes the decisions of governmental and non-state actors whose authority derives from statute, such as regulatory college standards, tribunal guidelines, and government policies and programs. These types of delegated authority do not require the same rigorous procedures as enacting legislation. However, they are a significant part of the legal system and must conform to fundamental legal frameworks, such as administrative and constitutional law.

Take the College of Physician and Surgeons (CPSO), which is one of the colleges regulated under the Regulated Health Professions Act, 1991 (RHPA).[90] The CPSO’s policies must fit within its mandate under that statute, and they must maintain consistency with the Human Rights Code,[91] SDA, HCCA, common law standards of care for physicians and so on. Should these laws change, the CPSO’s policies would change. In turn, the CPSO itself might influence the advancement of the common law when its standards are considered by the judiciary.[92]

There are also different legal traditions in Canada, including Indigenous legal traditions and religious laws.[93] These legal traditions are grounded in protected rights that individuals and communities enjoy under the Constitution and human rights statutes.[94] Other rights under these two sources of law include rights to life, liberty and security of the person; language rights; and the right to be free of discrimination based on grounds such as race, national or ethnic origin, sex, age and disability.[95]

Laws can infringe these guaranteed rights on their face or in practice, and one of the roles that law reform agencies assume is to identify areas of concern that may not be readily apparent. Although the LCO cannot declare a law invalid, we may nevertheless recommend measures that would ensure consistency with foundational rights and principles.

Moreover, where we find that a law is valid or appropriate but there are barriers to proper implementation, we may make recommendations about practical tools for implementation, such as pilot programs, education and training, and advocacy supports in the community.

Given the LCO’s expansive definition of the law, our analysis and recommendations may thus concern a range of instruments and, also, actors from government ministries to regulatory colleges and community organizations.

2.      The limits of the law

Laws relating to care in the last stages of life can only be a partial answer to the complex medical, administrative, ethical and social issues that run throughout this project. Stakeholders informed the LCO about various constraints that exceed the law’s reach and, therefore, limit the project scope. Clinical best practices are an obvious example.

Economic pressures in Ontario must also be taken into account as we formulate our recommendations. In our consultations, we heard about the shortage and inequitable distribution of resources available for care in the community, long-term care homes, hospices and elsewhere. Often facilities lack the resources to provide adequate supports to persons who are ill or frail. And caregivers may be stretched to the limits when they use their own finances to help another. As a general rule, the LCO does not make direct recommendations about policies for specific government expenditures. Our suggestions could nonetheless have an indirect impact on resource allocation insofar as changes to legislation, policies, programs and institutions may require funding.

Additionally, while the law can foster change, it cannot transform society by itself. Perspectives on the value of life and death, prejudices against certain groups and opinions on a patient’s best interests illustrate the types of issues that the law can address as a matter of rights and principles, such as safety, equity and dignity. However, the law also exists within the larger context of attitudes and structures that naturally enhance or diminish its effectiveness.

C.     Legal Rights and Principles Affecting Health Care

1.      Constitutional rights and principles

The Constitution Act, 1867 and Constitution Act, 1982, including the Canadian Charter of Rights and Freedoms, lay the foundation for government powers and duties respecting health care and corresponding rights for individuals.

Under the Canada Health Act (CHA), the federal government participates in regulating health care through its constitutional spending powers.[96] The federal government transfers funds to provinces that provide health care services through insurance plans, such as the Ontario Health Insurance Plan (OHIP). Service delivery rests largely with the provinces due to their exclusive authority over hospitals (and other health institutions) and “property and civil rights”, which “has been interpreted broadly by the courts to encompass most professional services”, including health care providers.[97]

There is no constitutional right to health in Canada and the Supreme Court has explained that medicare “is, by its very terms a partial health plan”.[98] The CHA grants conditional funding for the provinces to insure “medically necessary” services provided by hospitals and physicians.[99] Medically necessary services are not defined in standardized criteria and they vary across jurisdictions.[100] But the Act does distinguish them from “extended health care services”, which the provinces are not obliged to fund or administer.[101] Extended services relevant to this project include palliative care in private and long-term care homes not administered by physicians, and medications outside hospital.[102]

The provinces can and do supplement the CHA baseline of core services at their discretion.[103] For instance, the Ontario Drug Benefit Program covers the costs of some prescriptions for persons age 65 and older, living in long-term care or receiving home care.[104] Across the country publicly funded non-core services are inconsistent, there may be limits on eligibility and private co-payments may be charged.[105]

While rights to care arising from the CHA and provincial plans are circumscribed, the Supreme Court has nonetheless found that “where the government puts in place a scheme to provide health care, that scheme must comply with the Charter”.[106] In several cases, the Court has also identified what types of government activities violate the Charter. Below, we briefly summarize notable findings on the grounds of equality and life, liberty and security of the person:

Equality (Charter, s.15): Publicly funded health care services must be provided in a non-discriminatory manner. In Eldridge v. British Columbia (Attorney General), the Supreme Court held that requiring deaf persons to pay for communication assistance services they needed to access the same basket of health services as the general public violated s.15 of the Charter.[107] As a result, the government was ordered to take positive steps to accommodate deaf persons up to the point of “undue hardship” by providing sign language interpretation necessary for effective communication.[108] Section 15 equality protection does not, however, extend to discrimination claims relating to services that governments have chosen not to include in the basket of medicare services.[109] 

Life, liberty and security (Charter, s.7): The Charter protects individuals from criminal sanctions against medical practices that deprive them of fundamental rights and s.7 cases have expressly supported rights for persons with terminal illness and chronic disease.[110] In explaining the invalidity of prohibitions against physician-assisted suicide in Carter, the Supreme Court held that s.7 engages principles of autonomy, dignity, quality of life and the right to make decisions about one’s bodily integrity and medical care.[111] Particularly relevant to this project, the Court stated that the Constitution “recognizes the value of life, but it also honours the role that autonomy and dignity play at the end of that life”.[112]

The application of s.7 to health care outside the criminal context is ambiguous.[113] In Chaoulli v. Quebec (Attorney General), the Court split on whether restrictions on private insurance for otherwise publicly funded services infringe s.7 when the public system fails to provide timely, quality care.[114] The case was ultimately decided in the claimant’s favour under Quebec’s provincial rights framework.[115] But “even the justices who read section 7 more liberally emphasize[d] that the Charter does not constitutionalize a positive right to health care”.[116]

As mentioned above, specific constitutional rights have been recognized by the courts regarding health, such as non-discrimination in publicly funded care. Furthermore, the Supreme Court’s decision in Carter established a right to physician-assisted dying in Canada. This constitutional right has since been interpreted and incorporated into federal and provincial measures for the planning and delivery of medical assistance in dying. We discuss these developments more in-depth in chapter 4.

However, a positive right to palliative care has not yet been adjudicated in Canada. Quebec’s An Act Respecting End-of-Life Care establishes a “right to receive end-of-life care” in facilities, residential hospices and homes in that province.[117] The LCO is aware of legal professionals and community advocates who argue for a national right to palliative care under ss.7 and 15 of the Charter and we will keep abreast of related developments in this project.[118]

Constitutional rights to other forms of health care have also already been asserted on Indigenous and religious grounds.[119] The cases addressing those rights involve complex issues about the interaction of the Constitution with provincial decision-making laws, and we have reserved our analysis of them to more suitable parts of the paper. Only a few observations are notable here.

The first is that the federal government’s power to make laws respecting Indigenous peoples under the Constitution Act, 1867 complicates governance over health care for Indigenous peoples, both in terms of planning and administration, and individuals’ access to palliative care.[120] Second, faith and cultural communities’ legal advocacy on constitutional grounds attests to concerns that the LCO heard regarding the need to integrate differing values about life, death and treatment into medical perspectives and systems.

  • For more information on care in the last stages of life for Indigenous peoples, see chapter 5.D.3, and for faith and cultural communities, see chapter 6.G.

2.      Fundamental provincial rights and principles

 Ontario’s institutional framework for delivering health care is embedded in statutes that are fragmented across sectors, such as the Home Care and Community Services Act, 1994 and Long-Term Care Homes Act, 2007.[121] Unlike Quebec, British Columbia, Alberta and other jurisdictions with strategies to incorporate palliative care across the system, Ontario is currently formulating its provincial strategy.[122] We present how Ontario’s existing regime is developing later in this discussion paper, including specific laws, policies and programs (see chapter 4).

Here, the focus is narrower. This section briefly canvasses three areas of provincial law that (similar to constitutional law) integrate fundamental rights and principles across sectors: health quality, human rights and decision-making.

The Excellent Care for All Act, 2010 articulates an overarching vision for publicly funded “high quality health care” in Ontario.[123] The preamble describes a high quality health care system as one that is accessible, appropriate, effective, efficient, equitable, integrated, patient centred, population health focused, and safe…[124]

Furthermore, the preamble expresses the belief that supports for patients and caregivers and patients’ lived-experience are “a critical element of ensuring the future of our health care system”.[125] These acknowledgments directly underpin Ontario’s performance measurement and improvement laws, and they could be interpreted as principles that guide separate laws relating to care in the last stages of life (e.g., accessibility, integration and equity).

The Ontario Human Rights Code (Code) applies more directly to a range of actors in the province as legislation with quasi-constitutional status. The Code resembles s.15 of the Charter because its purpose is to uphold and mainstream equality rights.[126] Similarly, it prevails over statutes and regulations, and applies to government activity. However, the Code has a wider scope – it also applies to private businesses and organizations, including care settings.[127]

The Code requires that services, goods and facilities treat every person equally without discrimination based on race, place of origin, creed, sexual orientation, gender identity, age and disability, among other grounds.[128] Compliance may demand accommodations that meet the needs of disadvantaged persons up to the point of undue hardship.[129]

The Code is inspired by principles of inherent dignity, the worth of every person and participation in community life.[130] The Accessibility for Ontarians with Disabilities Act (AODA) and Ontario’s Action Plan for Seniors have comparable goals with respect to these specific communities, which have an interest in the LCO’s project. These two frameworks supplement to Code with methods for implementing tailored standards, policies or programs.[131]

Decision-making laws are not the final instance of cross-cutting provincial laws in this context, but they are our last example here.[132] Together, the Health Care Consent Act, 1996 and Substitute Decisions Act, 1992 govern informed consent, advance care planning and substitute decision-making. The HCCA empowers individuals to make decisions for themselves when capable.[133] It also enables them to express wishes, values and beliefs that SDMs must take into account when making decisions on their behalf, should they become incapable.[134] Health care providers must obtain informed consent from a patient or SDM prior to administering every treatment with very few exceptions stipulated in the HCCA.[135]

The HCCA and SDA codify common law rights to bodily integrity and personal autonomy in decision-making, which the courts have described as “co-extensive” with the constitutional right to security.[136]

3.      Interactions with professional standards of care

Professional standards of care are intimately tied to the law. Professional standards of care have several sources: the common law, statute and regulatory college guidance, which may include policies, codes of ethics and guidelines.[137]

In the course of this project, the LCO learned that health care providers sometimes refer to the “standard of care” as a clinical determination about beneficial treatment options for a patient. As a legal concept, however, standards of care are much more – they determine what can be reasonably expected of a prudent professional in the circumstances.[138] They encompass clinical judgment about treatment options and non-clinical rights and principles under the law. For instance, standards of care include duties of disclosure and obtaining informed consent.[139]

Standards of care may be defined through case law when individuals allege that providers negligently executed their duties. Negligence law helps to define standards of care insofar as it provides information about what would be expected of a prudent professional faced with the facts at hand. In determining the standard of care, the courts may take into account statute as well as regulatory college guidance. Regulatory college guidance may be informative, though not determinative of the standard of care. In turn, regulatory college guidance and general clinical standards of practice must be updated to be consistent with the law.[140]

Aside from health care professionals, lawyers also provide services to persons who are dying, caregivers and family members. Their respective regulatory colleges are mandated under statute to oversee issues relating to licensing, practice standards, competence, complaints and discipline.[141] For lawyers, the Law Society Act applies to the Law Society of Upper Canada, while for health professionals the Regulated Health Professions Act, 1991 applies broadly to a number of self-governing health professions.[142]

Members of the public who have complaints about the care they receive have several avenues of recourse within and outside regulatory colleges. Many health facilities, such as hospitals, have informal dispute resolution processes. The Law Society Act and RHPA also require regulatory colleges to administer complaints resolution procedures.[143] Furthermore, appeals of regulatory college complaints determinations may be available through administrative processes (e.g., HPARB),[144] and the courts may lend an added degree of supervision as a last resort.

Throughout this paper, we consider matters relating to professional ethics and practice. We also review mechanisms that could prevent or resolve disputes prior to making a formal claim.

D.    Questions for Discussion

3. What legal rights and principles are important for shaping care and establishing professional standards in the last stages of life?