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