Accompaniment
The term “accompaniment” is derived from the French “accompagnement”, which is commonly used in France and Quebec alongside the word “treatment” (fr. “soins”) to describe two interconnected elements of palliative care. Accompaniment complements medical treatment and involves a range of services and supports for persons transitioning through the dying process such as being present; listening; and providing cultural, spiritual, psychological and social counselling. Various individuals provide accompaniment, including health care providers, caregivers, family, friends, community members and volunteers.[865]
Advance care planning
The LCO has adapted the definition of advance care planning used by the Hospice Palliative Care Ontario “Health Care Consent Advance Care Planning Community of Practice” as follows:
The Substitute Decisions Act, 1992 and Health Care Consent Act, 1996 govern ACP in Ontario. ACP is a process that involves the mentally capable patient:
- IDENTIFYING his/her future SDM, by either
Confirming his/her satisfaction with their default/automatic substitute decision-maker in the SDM hierarchy list in the HCCA (presented above)
OR
Choosing someone else to act as SDM by preparing a power of attorney for personal care (the formal written document, discussed above).
- SHARING HIS/HER WISHES, VALUES AND BELIEFS through conversations with the SDM and others that clarify her/her wishes, values and beliefs, and more generally how he/she would like to be cared for in the event of incapacity to give or refuse consent (e.g., What is quality of life to the patient? What is important to the patient with respect to his or her health?)
ACP does not constitute consent to treatment. Except in emergencies, health care providers must always obtain consent from an individual or SDMs prior to administering treatment, even if the individual has engaged in ACP. Obtaining consent is a continuous process that must precede every treatment. When substitute consent is required, known wishes, values and beliefs service to guide the SDMs’ decision-making process. Because a person’s wishes, values and beliefs may change over time, later wishes expressed while mentally capable prevail over earlier wishes.
ACP can be initiated and reviewed at any time, not just at end-of-life.[866]
Advance care plan, living will, advance directive
These terms are not legally defined in Ontario law.[867] Although they are used commonly, they are borrowed from decision-making regimes in jurisdictions outside Ontario, including Canadian provinces and foreign jurisdictions.[868]
In those jurisdictions, these terms may refer to documents that can be used to instruct a health care provider to administer treatments directly when a patient becomes incapable, without first obtaining consent from an SDM. Ontario law, however, requires that health care providers always obtain consent – even where a patient has engaged in advance care planning or has documented wishes.[869]
Capacity
Under the HCCA, a person is capable with respect to a health care decision if he or she is able to understand information that is relevant to making a decision and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision.[870] In Ontario, where an individual lacks capacity and a decision must be made, a substitute decision-maker will be authorized to do so in his or her place.
Care
We use the term “care” broadly to include all forms of treatment, accompaniment and assistance with daily living that individuals may receive as they approach death. The definition of care used in this document also recognizes service and supports for caregivers, family and friends, such as respite and bereavement counselling.
Caregiver
Caregivers are individuals who provide care to family, friends, neighbours and community members with health conditions, disabilities or aging needs. For the purposes of this project, the term “caregiver” includes those who provide care informally and on a voluntary basis and does not include professional providers.
Care setting
Care settings are locations where care is provided to persons who are dying, including private homes, the community, group homes, shelters, long-term care homes, hospitals, residential hospices and retirement homes, among others.
Consent
Under the HCCA, health care providers must obtain consent from a capable individual or an SDM prior to administering treatment, except in emergencies.[871] Consent must relate to a specific treatment, be informed and voluntary, and must not be obtained through misrepresentation or fraud. Informed consent requires that information is provided on the nature, expected benefits, material risks and material side effects of the treatment as well as on alternative courses of action and the likely consequences of not having the treatment. Informed consent also requires that the person receives responses to his or her requests for additional information about those matters.[872]
End-of-life care
End-of-life care refers to care provided to persons whose death is likely imminent.[873] Persons at the end of life are typically in the advanced stages of a life-limiting condition, are in their last weeks or days of life and may require intensive services. The terms “end-of-life care” and “palliative care” are often used synonymously in the literature; however, they are distinguishable. End-of-life care is only one aspect of palliative care. As defined below, palliative care is a philosophy of care and it encompasses a broader range of treatments and accompaniments throughout the dying process.
Frailty
Frailty is a syndrome that some older adults experience when they are particularly vulnerable to adverse health outcomes. Frailty is associated with the presence of multiple physical or cognitive conditions that put older adults at risk when they face additional stressors. Even seemingly minor stressors can trigger major changes in frail persons’ health and social functioning, potentially resulting in disability, death and hospitalization.[874]
Goals of care
Discussions about goals of care may take place between persons receiving care, SDMs, health care providers and family members and are intended to support goal-oriented decision-making.[875] Common goals of care include preferences to live longer, to maintain independence or to be comfortable at the end of life, among others.[876] In Ontario, goals of care are not defined under the HCCA and conversations about goals of care do not constitute consent to treatment. Instead, discussing goals of care is a precursor to informed and person-centred decision-making through legal frameworks for consent and plans of treatment under the HCCA.
Guardian
Guardians may be authorized to make decisions on behalf of another person with respect to property management or personal care. Guardians of the person may be appointed following an application to the Superior Court of Justice. Guardians of the person who have authority to give or refuse consent to treatment on an incapable person’s behalf are the first individuals identified in the hierarchical list of automatic SDMs under the HCCA.[877]
Last stages of life
The “last stages of life” is a broad and inclusive umbrella term that we use in this project to capture the experience of all persons who are approaching the end of their life, whether as a result of terminal illness, chronic conditions or serious frailties that could progress until the end of life. During the last stages of life, individuals might benefit from different forms of care, including palliative and end-of-life care.
Medical assistance in dying
There are two forms of medical assistance in dying in Canada. Under the Criminal Code, medical assistance in dying means 1) the administering by a physician or nurse practitioner of a substance to a person, at their request, that causes their death; or 2) the prescribing or providing by a physician or nurse practitioner of a substance to a person, at their request, so that they may self-administer the substance and in doing so cause their own death.
There are eligibility and procedural restrictions on medical assistance in dying, which are described in chapter 4.E of this discussion paper.
Palliative care or hospice palliative care
Palliative care has philosophical and clinical dimensions. As a philosophy of care, palliative care strives to help individuals, families and caregivers address physical, psychological, social, spiritual and practical issues from the point of diagnosis throughout the dying process. Palliative care includes helping to prepare for and manage choices, cope with loss and grief, treat active issues, prevent new issues from occurring, and experience personal self-actualization. Palliative care represents a shift in focus along a continuum of care, when the goals of care move away from curative treatment toward the relief of suffering, improved quality of life and comfort measures; however, it does not exclude life-prolonging treatments.[878] Patients may be eligible to receive specific treatments and accompaniments that are available in the health care system and reflect the philosophy of palliative care. Palliative care, hospice care and hospice palliative care are often used interchangeably, and they are not defined in health legislation.
We discuss nuanced understandings of palliative care in chapter 4.C.
Palliative sedation therapy
Palliative sedation therapy is intended to address the needs of patients who experience intolerable suffering from refractory symptoms by administering medications that have the effect of reducing consciousness. Refractory symptoms are present if all other possible treatments have failed or, in the patient’s circumstances, there are no available means to alleviate symptoms that he or she finds acceptable.[879] Palliative sedation therapy may be combined with other palliative care treatments and accompaniments.
Physician-assisted dying
The Supreme Court of Canada has used the term “physician assisted dying” to describe a physician providing or administering medication that intentionally brings about a patient’s death, at the patient’s request.[880] More recently, the federal and provincial governments have adopted the term “medical assistance in dying” (see above) as a means to capture the involvement of other health care providers, such as nurses and pharmacists, in this type of treatment.
In this document, we use physician assisted dying only when referring to the Supreme Court’s decision and its ramifications. Otherwise, we use medical assistance in dying.
Plan of treatment
Under the HCCA, a plan of treatment is defined as a plan that is developed by one or more health care practitioners to deal with health problems that a person has and may, in addition, deal with health problems that the person is likely to have in the future given the person’s current health condition.[881]
Plans of treatment provide for the administration of various treatments or courses of treatment and may, in addition, provide for the withdrawal and withholding of treatment, in light of the person’s current health condition.[882]
Power of attorney
A power of attorney is a legal document that an individual can use to authorize another person to make decisions on her or his behalf for property management or personal care. As one specific area of decision-making for personal care, a power of attorney may confer authority to give or refuse consent to treatment on the grantor’s behalf, in the event he or she becomes incapable.[883]
Hospice
Hospice care is used interchangeably with palliative care and hospice palliative care. However, the term “hospice” is also used to describe a variety of specific services and supports, and care settings. Residential hospices create a home-like environment for patients who are at the end of their lives and need constant, sometimes intensive, care.[884] In contrast, visiting hospices offer care through out-patient facilities or by travelling to a patient’s home. Finally, virtual hospices offer online resources to members of the public on palliative care, advance care planning and other issues relevant to the last stages of life.[885]
Respite
Respite provides relief to caregivers who need a break from supporting a person with daily living activities. Examples of respite include having a personal support worker attend to the person’s needs during the day or supplying a space for caregivers to rest for a few hours or overnight. As in these examples, respite may take place in the home or involve travelling to another care setting. Respite may be regular and planned in advance or provided in unexpected moments of need.
Substitute decision-maker
“Substitute decision-maker” is a generic term used to identify a person who is authorized to make decisions on someone else’s behalf. They include but are not limited to guardians, persons acting under a power of attorney and persons authorized to make decisions in accordance with the hierarchical list of automatic SDMs under the HCCA.
In this project, we primarily refer to SDMs who are authorized to give or refuse consent on a behalf of an incapable person with respect to health care treatment. These SDMs are identified in the hierarchical list of automatic SDMs under the HCCA. Health care providers proposing treatment must follow this list when a patient has been found to be incapable of making a treatment decision.
- The full list of SDMs who can give or refuse consent to treatment under the Health Care Consent Act, 1996 is reproduced in Appendix F.
Treatment
The HCCA defines treatment as “anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose” with some exceptions set out in the legislation.[886]