A. Background to this Research Project
At common law and under Ontario legislation, informed consent is required before a health practitioner can provide treatment to a patient. This is the lens which focuses and guides the analysis of many health law problems encountered by the authors in daily legal practice. While there are exceptions to the requirement to obtain informed consent, these are narrow and time-limited.
Where a patient is incapable of giving or refusing informed consent to treatment, the common law has historically provided incomplete guidance to health practitioners on when, and in what circumstances, treatment can be provided. In Ontario, this issue has been legislatively addressed through the Health Care Consent Act, 1996 [the “HCCA”] and its predecessor legislation. The HCCA sets out an overarching requirement to obtain informed consent to treatment (except in emergencies), and also provides for a hierarchy of substitute decision-makers (“SDMs”) who may give or refuse consent in place of the patient where that patient is incapable.
Importantly, where a patient is incapable, the requirement to obtain informed consent is not abrogated, but instead the informed consent is obtained from communications with SDMs. In this way, consent in Ontario must always come from contextualized communications with a person (either the patient or the patient’s SDM) and can never come solely from a document.
While health practitioners are required to obtain informed consent from patients before providing a proposed treatment (except in an emergency), many health care organizations have developed policies and practices encouraging or requiring patients (or if incapable, their SDMs) to articulate the types of health care they might want in the future. In many cases, this occurs upon admission to a health care organization or service. On the one hand, this pre-planning is a welcome development (because patients are turning their minds to what they would want in the future) but it is also potentially problematic: discussions around future health care typically occur in a factual vacuum, without specific reference to the patient’s current health condition or prognosis. This creates a risk that patients are expressing uninformed and arguably low-quality wishes (e.g. wishes that are less likely to reflect the decision the patient would make if capable in the future and fully informed of the risks and benefits of treatment). Often, these discussions about future health care are imposed by health care organizations, prematurely and subject to arbitrary timelines. This emphasis on pre-planning has also extended to other settings where health services are provided, such as long-term care homes, retirement homes, and home care.
Patients are often required to participate in this “advance care planning” by giving what are sometimes referred to as “advance directives” about specific treatments they will accept or refuse in future. “Advance care planning” is a generic term used across many Canadian and international jurisdictions to describe the process of planning by an individual for a time when he or she no longer has the mental capacity to make health care decisions. Advance care planning is comprised of two elements:
(1) Identification of the individual who will make decisions for the patient in the event the patient becomes incapable (sometimes referred to as a “Proxy Directive,” as the patient is designating their proxy decision-maker). The Proxy is referred to as an SDM in the HCCA; and,
(2) Expression of wishes, values, and beliefs about future health care decisions to be made in the event the patient becomes incapable (sometimes referred to as the “Instructional Directive,” as the patient is giving instructions about future care). In the HCCA, these instructions are referred to as “wishes”.
This research paper on health care consent and advance care planning in Ontario (the “Paper”) focuses on persistent misconceptions around the use of instructional directives in Ontario, rather than the designation of proxy decision-makers. This is largely because in Ontario there is a hierarchy of SDMs already established under section 20 of the HCCA, which sets out the default SDM(s) of a patient, unless he or she makes a choice to deviate from the ranking (the exception is where a person other than the patient applies to become the patient’s representative, which will be discussed further below).
In many settings, forms or documents (such as “level-of-care” forms or other advance directive forms) are used to record instructional directives. In Ontario, with the narrow exception of emergency treatment, health practitioners can only give effect to prior expressions of wishes, values and beliefs through informed consent to treatment by an SDM.
“Advance directive” is a generic term used in Ontario to refer to specific communications from a patient containing his/her wishes regarding health care choices in the future. However, in many other jurisdictions this phrase refers instead to a formal document providing directions specifically to a health practitioner. The term “advance directive” is also sometimes used beyond the expression of wishes, values, and beliefs (instructional directives) to refer to the designation of an SDM (a proxy directive).
The terms “advance care planning” and “advance directive” do not appear in the HCCA, nor in the Substitute Decisions Act, 1992 (the “SDA”): collectively, the Ontario statutes governing health care consent and substitute decision-making. With regard to the designation of an SDM, the SDA refers only to the designation of an attorney pursuant to a power of attorney for personal care. With regard to future health care instructions, the HCCA refers only to the patient’s “wishes”, “values” and “beliefs”. The use of the language of wishes, values and beliefs reflects the fact that an individual may not always have all of the necessary information required to give an informed consent when speaking about future health care. Wishes, values and beliefs will eventually guide that individual’s SDM when a treatment is proposed and substitute consent is required. An SDM must act in accordance with the patient’s applicable prior capable wishes and, if none were expressed, must consider the patient’s other wishes, values and beliefs in deciding what is in the patient’s best interest (as that term is defined in the HCCA).
Importantly, wishes, values and beliefs expressed by an SDM have no legal effect, unless such wishes were expressed, or such values and beliefs were held, by the now incapable patient. In short, no legal effect is given to new wishes, values, and beliefs where they are expressed by an SDM. Under Ontario legislation, the SDM’s role is solely to give or refuse consent to treatment and to recount the patient’s wishes, values and beliefs to health practitioners. The SDM may not make new wishes on behalf of the incapable patient. Only the patient can express wishes, values and beliefs to guide their own future care. This point cannot be emphasized enough, given that SDMs do occasionally try to assert new wishes on behalf of incapable patients.
While legal effect is not given to new wishes, values, and beliefs expressed by the SDM, SDMs can lawfully give informed consent to a plan of treatment governing future care to be provided to the patient. This is permitted only if this consent is limited to care related to the patient’s current health condition. This is one of the most significant (and potentially least understood) issue in advance care planning in Ontario: only a capable patient may make wishes governing future treatment, whereas either a capable patient or if incapable, an SDM, may provide an informed consent to a plan of treatment (including its withholding or withdrawal), tied to the patient’s current health condition. This will be discussed in detail below.
In the authors’ view, the Ontario model of decision-making for incapable patients provides an appropriate balance between the right of patients to direct their own health care and the risk that patients may be inadvertently trapped by inapplicable and categorical wishes expressed while capable. Prior capable wishes may not reflect the decision the patient would make if capable today. When applied properly, the law in Ontario ensures an opportunity for patients, while capable, to express wishes about their future care and treatment. It also enables SDMs to interpret and apply the patient’s wishes when the SDM is called upon to give or refuse informed consent for an incapable patient. Importantly, we believe the law in Ontario is also good for health practitioners, as it allows health practitioners to take direction from an SDM rather than be required to make decisions for patients. Except in emergencies, health practitioners are relieved from deciding the value of their services to patients, and can rely on the clear hierarchy of SDMs set out in the HCCA.
Unfortunately, there are persistent misconceptions around the use of instructional directives in Ontario. Some health practitioners in Ontario mistakenly believe that written advance directives are equivalent to informed consent. For example, if an advance directive is included with the patient’s record of personal health information (such as the hospital chart), some health practitioners erroneously believe they can bypass patients or their SDMs when a treatment decision is required. They may incorrectly treat a recorded wish as sufficient and binding – regardless of whether the patient is capable or incapable of giving informed consent with respect to the proposed treatment. Even if health practitioners seek informed consent where a wish has been expressed, the health practitioner may pre-screen possible treatment options proposed to the patient or the SDM based on an interpretation of the patient’s wishes.
As noted above, in some other jurisdictions, an advance directive is a direction specifically to the treating health practitioner, who does not then need to obtain consent from an SDM before providing treatment. The difficulty with this model, which was not adopted in Ontario, is that it gives sole authority to health practitioners to determine the applicability of a patient’s prior capable wishes. This often means that health practitioners with only passing contact with a patient are given authority to decide whether to administer the treatments they are proposing, with only a sparsely worded written directive as their guide.
The authors do not recommend following other jurisdictions’ models for advance care planning. Such models generally give a great deal of authority to health practitioners to make end-of-life decisions for patients – interpreting patient wishes, values and beliefs. These models also tend to de-emphasize informed consent to treatment and contextualized decision-making, and instead, replace them with rote recording and implementation of paper forms. Both of these facets may increase the risk of inauthentic decision-making.
In Ontario, informed consent is a process that requires communication, almost always oral, between a health practitioner and the patient or SDM. While consent can and should be recorded by the health practitioner in writing once obtained, it must always come from a contextualized discussion with the patient or SDM (if the patient is incapable) about patient’s health condition and treatment options (and not from a form).
Misinterpretations about health care consent and advance care planning may also have a disproportionate impact on patients and SDMs who are more vulnerable due to age, disability, cultural background and/or health literacy, and who may, as a result, be excluded from appropriate health care decision-making contrary to the law.
In an effort to influence both law reform in Ontario and the best practices of health care organizations and health practitioners, this Paper will explore the standards, information and supports that are statutorily mandated or voluntarily available to those creating, exercising and applying health care consent and advance care planning tools. We will also analyze the legislative schemes in select jurisdictions to contrast what is in place in Ontario, and how the laws of these jurisdictions may contribute to persistent misunderstandings of Ontario law.
B. Structure of this Paper
This Paper begins with a conceptual primer on the principle of patient autonomy followed by a factual primer on advance care planning. It then provides a comprehensive explanation of Ontario’s health care consent and substitute decision-making laws. This is followed by a discussion of how advance care planning and advance directives fit within Ontario law. We then examine the laws of other provinces and countries.
Following this review of the law, we examine how health care consent and advance care planning are operationalized in Ontario. This is done through a review of policies, procedures and the results of our focus groups with stakeholders, including representatives of seniors’ organizations, lawyers practicing in this area and health practitioners. Finally, we summarize the issues we have identified in Ontario and make recommendations for possible reform and/or education.
C. Advocacy Centre for the Elderly (ACE)
ACE is a specialty community legal clinic that was established to provide a range of legal services to low income seniors in Ontario. These legal services include individual and group client advice and representation, public legal education, community development and law reform activities. ACE has been operating since 1984 and it is the first and oldest legal clinic in Canada with a specific mandate and expertise in legal issues of the older population. A significant portion of the practice at ACE is focused on health law issues related to patient’s rights, health consent, and substitute decision-making. Over the years, ACE lawyers have been directly involved in many of the major initiatives in Ontario on these issues including the Advisory Committee on Substitute Decision-Making for Mentally Incapable Persons, the Ontario Strategy for Alzheimer Disease and Related Dementias, Initiatives #2 and #7 on Physician Training, and Advance Directives on Care Choices and currently the Ontario Medical Association President’s Advisory Panel on End-of-Life care.
Judith Wahl was appointed by the Ontario Attorney General to act as the Chair of the Interim Advisory Committee for the Implementation of the Substitute Decisions Act , and was a primary writer of the content of the health professionals’ training manual for the Alzheimer’s Physicians’ Training which focused on health care consent and advance care planning . She has been a presenter and teacher at numerous educational forums on consent and advance care planning for seniors and their families, as well as for health professionals.
Brendan Gray was called to the bar in 2010 after articling as a judicial law clerk for the judges of the Ontario Superior Court of Justice in Toronto. Following his call to the bar, Brendan practiced in the private bar with a particular focus on health law at a litigation firm in Toronto, and joined ACE in 2013. Brendan has represented clients in health law related proceedings at all levels of Ontario Courts.
D. Dykeman Dewhirst O’Brien LLP (DDO)
DDO is a boutique health law firm located in Toronto, serving primarily institutional clients such as public hospitals, long-term care homes, community mental health and addictions agencies, family health teams and community health centres. A significant portion of the advice DDO lawyers provide relates to consent, capacity and substitute decision-making, advance care planning, end-of-life, and difficult situations involving patients/residents and families. Mary Jane Dykeman was previously in-house counsel to the Psychiatric Patient Advocate Office, as well as to two Toronto teaching hospitals (one with a major long-term care facility). She sits on the board of the Alzheimer Society of Toronto and chairs the Board of the Anne Johnston Health Station, a community health centre serving seniors, the barrier-free (clients with mobility issues) and youth.
The methodology for preparing this Paper was comprised of three main parts: (1) a literature review; (2) a survey of institutional policies and practices; and (3) conducting focus groups and meetings with stakeholders.
1. Literature Review
We conducted a comprehensive literature review of issues surrounding health care consent and advance care planning, including:
- Provincial and international legislation;
- Policies and practices;
- Case law;
- Academic articles;
- Advance Care Planning tools, forms and systems; and,
- Web-based materials.
In addition to reviewing the laws and policies of Ontario, we examined legislation in four other Canadian provinces: British Columbia, Alberta, Nova Scotia and Saskatchewan. Outside Canada, we examined legislation in Queensland (Australia), England, Hawaii (USA), Oregon (USA), and Texas (USA). We chose these jurisdictions for a variety of reasons, including: language (these countries speak and write in English, and their statutes are readily available in English); similar legal systems; varying size (in terms of both geography and population); and noteworthy laws and/or approaches to health care environments.
The purpose of the comparative review was to analyze different legal models to explore how those models differ from the laws of Ontario, and how those models may contribute to persistent misunderstandings around Ontario’s laws on health care consent and advance care planning. Due to the time constraints of the project, our analysis was not exhaustive. There may also be gaps between what is legislatively required and what happens in practice in other jurisdictions, as is the acknowledged experience in Ontario.
2. Survey of Institutional Policies and Practices
We conducted a survey of institutional policies and advance care planning documents to critique how Ontario’s laws on consent and capacity are applied throughout the province. We requested that public hospitals and long-term care homes provide copies of:
(a) excerpts from training materials, guides, and/or operational manuals that relate to consent to treatment, advance care planning, and/or substitute decision making;
(b) documents made available to patients and/or substitute decision makers relating to consent to treatment, advance care planning, and/or substitute decision-making (e.g., information pamphlets given to SDMs); and,
(c) standardized forms, templates, tools, and questionnaires used by health professionals to record consent or advance care plans (e.g. level of care, do not resuscitate (“DNR”), and consent forms).
We were fortunate to have the assistance of numerous health sector organizations and governmental regulators in facilitating our request for policies and forms from long-term care homes and hospitals.
In collecting documents from long-term care homes and hospitals, we undertook to not identify any particular health care organization in our final report, nor to disclose the contents of documents provided to us unless information identifying each participating organization had been removed. This is in keeping with the overall goal of this Paper to positively influence law reform and best practices, rather than to critique or publicize how particular health care organizations operationalize consent, capacity and substitute decision-making.
In total, we received documents from thirteen health care organizations from geographically diverse regions of Ontario. We received documents from hospitals, private long-term care homes, municipal long-term care homes and other institutions.
3. Meetings with Stakeholders
We met with a range of stakeholders to obtain their understanding of Ontario’s laws on consent, capacity, substitute decision-making and advance care planning, and on how health practitioners interpret and apply these laws in daily practice. Our primary goal was to speak with health practitioners, as they have the direct responsibility for obtaining informed consent to treatment and giving effect to advance care planning. We also had the opportunity to hear the views of focus groups comprised of seniors and lawyers, respectively. These focus groups provided anecdotal evidence but did not attempt to rise to the level of generalizable conclusions.
(a) Health Practitioners Focus Groups
Consultations and meetings with health practitioners for this project took place primarily between October and late November 2013. The breakdown of health practitioners at each meeting varied. At some meetings, the participants were primarily physicians. At other meetings, the participants were a broader cross-section of health professionals. Some of our consultations for this report were incorporated into scheduled educational sessions for health practitioners given by the authors. These educational sessions took place in Sarnia, Chatham, Windsor, Sudbury, and Toronto. Other consultations occurred during separately scheduled meetings organized specifically for this research project in Sarnia, Chatham, and Windsor (with the assistance of project staff at the Erie St Clair Local Health Integration Network (LHIN)) and in North Bay (organized with the help of a palliative care project manager at the North East LHIN). Below, we provide a list of the location of each presentation/consultation and the approximate number of participants:
- Toronto: Presented at four sessions during the Ontario Long-Term Care Physicians (OLTCP) Annual Meeting. These sessions occurred on October 26 and 27, 2013 with approximately 40 participants at each session.
- North Bay: Presented at a meeting of palliative care practitioners (various health practitioners) organized by the North East Regional Hospice Palliative Care Coordinator, North East LHIN. This meeting occurred on November 5, 2013 with approximately 20 participants.
- Sudbury: Presented at a meeting at the Northeast CCAC organized by the North East Regional Hospice Palliative Care Coordinator, North East LHIN. This meeting occurred on November 7, 2013 with approximately 60 participants.
- Sarnia, Chatham and Windsor: Presented at meetings organized by the Erie-St Clair LHIN. There were two sessions at each site on October 7-9, 2013 to approximately 265 total participants.
Neither the sampling of health practitioners, nor the phrasing of questions and follow-up questions to participants were intended to reach the level of a formalized scientific study. Instead, these were viewed as more informal stakeholder consultations.
(b) Seniors Focus Group
The authors conducted a focus group with long-term care residents and representatives of seniors’ organizations to obtain stakeholder input on the application of health care consent and advance care planning in the real world. While again these focus groups did not meet the rigours of scientific sampling, they were nonetheless invaluable to the authors in providing insight into some of the concerns seniors have with the process of health care decision-making.
ACE has extensive connections with seniors organizations throughout the province of Ontario (and nationally), and the authors sent invitations to almost all of these organizations requesting their participation in this research project. Groups were selected for invitation based on their involvement with health care matters and long-term care homes. Our seniors’ stakeholder focus group was comprised of eight individual representatives of the following organizations:
- Canadian Pensioners Concerned;
- Family Councils’ Program (an organization that facilitates family councils in long-term care homes);
- Ontario Society (Coalition) of Senior Citizens’ Organizations (OCSCO);
- Ontario Association of Residents’ Councils (an organization that supports Residents’ Councils in long-term care homes); and,
- the Canadian Association of Retired Persons (CARP).
Almost all of these representatives were seniors.
(c) Lawyers Focus Group
The authors conducted a focus group and other informal consultations with lawyers whose legal practices focus on elder law and health care consent. The purpose of these focus groups was to discuss the common practices of health practitioners in obtaining and acting upon informed consent and advance care planning that may not strictly comply with Ontario law. We were fortunate to discuss these issues with both prominent ‘patient-side’ and ‘hospital-side’ lawyers to understand their experiences, and to gain their insights into some of the commentary that grounds this Paper.
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