This section sets out the authors’ recommendations to address the issues identified in the immediately preceding section.
A. Guiding Principle: Contextualizing Health Care Decisions
Ontario law is somewhat unique (or at least is near one end of a spectrum) in its emphasis on obtaining consent for proposed treatment from an SDM even where a patient has engaged in formalized advance care planning. “Best practices” and clinical tools cross borders easily and instantly (especially now that they are available on-line), and the proliferation of extra-jurisdictional forms and policies appears to have influenced practices in Ontario. The bottom line is that forms, tools, and policies that may work in many other jurisdictions may be legally incorrect (or incomplete) in Ontario when adopted without revision.
As we have repeated many times in this Paper, with the exception of emergency treatment, Ontario law only allows patient wishes, values and beliefs to be implemented through the law of informed consent to treatment. While some jurisdictions allow advance directives to speak directly to health practitioners (for example, Alberta and Nova Scotia allow health practitioners to take direction from a personal directive where an applicable directive does not appoint an agent), Ontario law favours contextualized decision-making to a greater extent by ensuring that either patients or, if incapable, their SDMs give informed consent before treatment is provided.
The authors do not recommend any changes to this aspect of Ontario law. This law provides an appropriate balance between the interests of the patient in directing future care on the one hand, and on the other hand the risks associated with being confined by inapplicable written wishes, the pitfalls of legal drafting, and the vagaries of future health conditions. Ontario law is also supportive of health practitioners who (with the exception of emergencies) are not required to interpret nebulously drafted legal documents and can take direction from a real-life discussion with an SDM. Health practitioners are also protected from liability where they act reasonably and in good faith upon informed consent for incapable patients given by SDMs.
In our view, Ontario law is sound, but it is not always matched in its application at the front line. The goal of these recommendations is to encourage health practitioners and health care organizations to emphasize contextualized patient decision-making over rote recording and application of wishes, values and beliefs. While there will, and should always be, opportunities for patients to express wishes, values and beliefs about future care, more emphasis should be put on the interpretation of these statements by an SDM as part of obtaining informed consent to treatment. Similarly, more emphasis should be placed on obtaining informed consent to a plan of treatment governing future care related to a patient’s present condition, rather than simply recording the patient’s wishes. These recommendations are discussed in more detail below.
Our recommendations are aimed at encouraging contextualized patient decision-making.
B. First Recommendation: Give Priority to Consent to Treatment
Too often, health practitioners solicit patients to engage in advance care planning when consent to a treatment or a plan of treatment could (and likely should) be obtained. Perhaps for reasons of expediency, health practitioners opt to record patients’ wishes, values and beliefs, rather than have in-depth discussions with patients about their present health problems, the health problems that they are likely to have in the future given their current health conditions, and the future treatments that are available to address these health problems. Moreover, some health practitioners seem not to always give appropriate consideration to the uses that will, and legally may, be made of expressed wishes, values and beliefs in the future.
Under Ontario law, prior expressed wishes, values and beliefs are intended to guide the SDM in giving or refusing informed consent to treatment. Unfortunately, many health practitioners appear not to understand this aspect of Ontario law and believe the recording of advance directives to be a sufficient and complete step.
Where the risks and benefits of treatments connected to the patient’s current health condition are known, it would be preferable for health practitioners to seek consent to or refusal of a treatment or plan of treatment from a patient (or their SDM). In many cases, utilizing the plan of treatment provisions in the HCCA would limit the need to rely upon prior capable wishes in deciding whether to provide emergency treatment. This would, at least conceptually, lead to more authentic decision-making and reduce the stresses associated with treatment decisions made in emergency situations.
Institutional and regulatory policies and practices should encourage health practitioners to seek consent to a plan of treatment to the greatest extent possible before soliciting wishes, values and beliefs. While a process that emphasizes the importance of knowing the general wishes of a patient is important, more education is needed about closing the loop by seeking informed consent to a proposed treatment, rather than relying on wishes alone. While this could also be addressed legislatively, we have decided not to propose legislative reform to address this issue as it is doubtful, based on our learnings here, that legislative reform would address the operationalization of consent at the front line.
For the ease of the reader, we have prepared the below draft language as an example of what might be incorporated into health care organizations’ policies, as well as an example of how this policy might work in practice:
Policy
(1) Treatment Related to the Patient’s Present Health Condition
Before initiating a planned conversation with a capable patient to discuss his/her wishes, values, and beliefs in relation to future treatment(s) (also known as advance care planning), a health practitioner shall consider the extent to which future treatment(s) can be governed by an informed consent to treatment (or plan of treatment) relating to the patient’s present health condition.
For any future treatment(s) relating to the patient’s present health condition, a health practitioner shall seek the patient’s informed consent to, or refusal of, such treatment(s) by advising the patient of information about each of the below matters that a reasonable person in the same circumstances as the patient would require in order to make a decision (informed consent or refusal) about the treatment(s):
- The nature of the treatment.
- The expected benefits of the treatment.
- The material risks of the treatment.
- The material side effects of the treatment.
- Alternative courses of action.
- The likely consequences of not having the treatment.
A health practitioner shall also provide responses to any requests by the patient for additional information about the above matters.
Nothing in this policy should be interpreted as limiting the right of patients to express wishes, values and beliefs at any time to guide future care and to have these recorded by health practitioners. This policy is intended to guide health practitioner initiated processes for health care consent and advance care planning.
(2) Treatment Beyond the Patient’s Present Health Condition
Where all available and clinically indicated informed consents and refusals have been obtained from the patient in relation to treatment(s) relating to the patient’s present health condition, a health practitioner may then proceed to solicit the patient’s wishes, values and beliefs in relation to other treatments (i.e. advance care planning).
(3) Summary of Policy
First, discuss treatment(s) relating to the patient’s present health condition and seek informed consent to the treatment(s) or plan of treatment from the capable patient (or if incapable, the SDM).
Second, where informed consent (or refusal) cannot be obtained because treatment(s) to be discussed do not relate to the patient’s present health condition, health practitioners may assist the patient to advance care plan through soliciting the patient’s wishes, values and beliefs. These may only be obtained from the capable patient, not the SDM.
Example:
Ms. Jones is a patient recently admitted to a long-term care home. Dr. Singh is a physician practicing at the home. Pursuant to the home’s policies, a health practitioner is required to discuss and document whether Ms. Jones wants to be transferred to a hospital to receive particular treatments in the future.
Before requesting Ms. Jones’ wishes, values and beliefs about treatments in a hospital, Dr. Singh should first consider Ms. Jones’ present health problems and the health problems that Ms. Jones is likely to have in the future given her current health condition. Dr. Singh should then seek Ms. Jones’s informed consent or refusal to a plan of treatment relating to transfer to hospital for treatment(s) related to Ms. Jones’ current health problems or the health problems her current health condition make likely.
After exhausting the clinically recommended treatment options relating to Ms. Jones’ present health condition (for which informed consent may lawfully be given), Dr. Singh may proceed to solicit Ms. Jones’ wishes, values and beliefs in relation to other hospital-based treatments, as necessary.
We accept that it may not always be easy to tell which treatments relate to a patient’s present health condition, and which do not. The limits of informed consent to treatment (or a plan of treatment) are factual questions to be determined for each patient on the basis of clinical knowledge relating to potential treatments, the patient’s current health problems, and the patient’s likely future health problems based on his/her present health condition. Our goal is to prepare a framework that prioritizes obtaining consent to treatment over rote solicitation of wishes, values and beliefs.
We recommend that institutional and regulatory policies and forms require that health practitioners utilize consent to plans of treatment for all proposed treatments relating to the patient’s present health condition (as more fully set out in the plan of treatment provisions in the HCCA) before soliciting patient wishes, values and beliefs for future care.
C. Second Recommendation: Clarified Advance Care Planning Model addressing relationship with Health Care Consent
Our second recommendation is for the relationship between health care consent and advance care planning under Ontario law to be clarified for health practitioners. Closely connected with this recommendation is our proposal that the language used in health care consent and advance care planning policies, forms, and tools be harmonized with the terminology used in Ontario legislation. Forms, policies and guidelines should also expressly distinguish between the process of obtaining consent to treatment, and the process of recording patient wishes, values and beliefs.
In the opinion of the authors, “health care consent” and “advance care planning” should be thought of as a single process, divided into three parts.
1. Identifying the SDM (Advance Care Planning by Capable Patient)
The health practitioner should discuss with the capable patient the hierarchy of decision-makers under the HCCA to determine whether the patient is satisfied with their default SDM in the event he/she becomes incapable of giving or refusing consent. The patient should be advised that, if dissatisfied with their default SDM, the patient may (if capable to do so under the SDA provisions governing powers of attorney) create a power of attorney for personal care designating an attorney (or attorneys) who will rank ahead of the default family member SDMs.
While specifically not providing legal advice, health practitioners should explain the rules governing substitute decision-making to patients. Similarly, health practitioners should not provide legal advice to patients on drafting powers of attorney for personal care, but should refer patients to available resources explaining how to designate an attorney for personal care.
2. Recording of prior capable wishes, values and beliefs (Advance Care Planning by Capable Patient)
The health practitioner should discuss with the capable patient the patient’s 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 for the specific treatments discussed. These are possible treatment options that are not related to the patient’s present health condition (which should be addressed through health care consent from the capable patient) This discussion may be geared toward a particular health condition, or may be a broader discussion about messages that will help a future SDM determine how the patient would make decisions for him or herself.[431]
The health practitioner should be careful not to solicit highly specific, yet clinically uninformed, wishes with respect to future treatments that may categorically bind future SDMs. Rather, health practitioners should focus on more general wishes, and should encourage the patient to communicate directly with their SDM.
3. Obtaining Health Care Consent (Informed Consent)
Health care consent is not commonly considered in tandem with advance care planning but, in the opinion of the authors, should be. Too often, advance care planning is conceptualized as rote collection and recording of prior capable wishes, without attention to how those wishes will be acted upon in the future.
Health practitioners should recognize that informed consent to treatment is still required from the capable patient (or the incapable patient’s SDM) even if an advance care plan exists (except in an emergency). Health practitioners should not pre-screen treatment options based on their own interpretation of the patient’s wishes, values, and beliefs, but should instead propose a full list of options to be narrowed through discussions with the patient or SDM. Health practitioners have an obligation to explain to the SDM their statutory role and obligations to the patient.
Health practitioners should recognize that SDMs cannot express new wishes, values and beliefs on behalf of the patient. Health practitioners should also recognize that they must assess whether the SDM is complying with his/her obligations to the patient, and bring an application to the CCB if necessary.
Fundamentally, we are suggesting closing the loop on advance care planning. The current practice in Ontario has advance care planning front-loaded to the point where the ‘back-end’ consideration of patient wishes, values, and beliefs appears to be secondary to their ‘front-end’ expression. More emphasis should be placed on advance care planning at the ‘back-end’: i.e., to the contextualized informed consents or refusals of SDMs (if the patient is incapable).
We should explain how the above model for health care consent and advance care planning relates to our first recommendation on giving priority to plans of treatment. In the authors’ opinion, the recording of prior capable wishes (part 2 above) should occur after consents to (and refusals of) treatments relating to the patient’s present health condition have been exhausted. Identification of the SDM and health care consent from an SDM (parts 1 and 3 above) may occur at any clinically indicated time. However, the above model for health care consent and advance care planning is not dependant on our first recommendation being accepted or implemented.
We recommend conceptualizing health care consent with advance care planning as a three part process involving the:
(1) Identifying the SDM by the capable patient;
(2) Recording wishes, values, and beliefs expressed by the patient when capable; and,
(3) Obtaining health care consent from the SDM.
D. Third Recommendation: Use Terminology in HCCA
Health practitioners, and institutional policies and forms should use the language expressed in the HCCA when seeking health care consent and engaging in advance care planning. When engaging in advance care planning, the use of language such as ‘directions,’ ‘decisions’ and ‘living wills’ should be discouraged in Ontario. Similarly, the term ‘Advance Directive’ should not be used in Ontario on health care forms, institutional policies, or in discussions with patients. These terms would appear to be transplanted from other jurisdictions where, for example, an advance directive or a living will, are specific documents that ‘direct’ treating health practitioners. The use of these terms could lead patients, SDMs and health practitioners to misunderstand Ontario’s legislative scheme for giving and refusing informed consent.
We recommend that terminology used in health care consent and advance care planning forms, tools, and policies track the language in the HCCA, and that these documents should expressly distinguish between consent and the recording of wishes, values, and beliefs.
E. Fourth Recommendation: Revise the HCCA to make advising the SDM of his/her rights and obligations part of informed consent
We believe that more informed and involved SDMs could go a long way toward ensuring that health care practice embodies Ontario’s legislative balance between health care consent and advance care planning. With knowledge of their role to interpret and apply prior capable wishes, and to make decisions in the patient’s best interests, active SDMs could help health practitioners ensure that advance care planning tools and forms are used appropriately, and that informed consent is obtained. In the experience of the authors, and as borne out by our focus groups, SDMs are sometimes unaware of the principles upon which they are to make health care decisions for incapable patients.
From a practical perspective, the best way to ensure that SDMs obtain the information they need to make decisions on behalf of incapable patients is for health practitioners to provide this information. The Ontario Court of Appeal has already recognized an obligation on health practitioners to inform SDMs of their decision-making obligations before providing treatment.[432] However, it is our experience, as confirmed in focus groups, that health practitioners are unlikely to be aware of this obligation. We recommend codifying this obligation in statute, incorporating the health practitioners’ obligation to inform SDMs of their decision-making obligations into the requirement for health care consent to be informed. In short, where an SDM is giving or refusing consent on behalf of an incapable patient, we recommend that, in addition to health practitioners’ current statutory obligation to obtain informed consent, health practitioners also be statutorily obliged to inform SDMs of their role (recognizing that this could be done by simply providing a plain language pamphlet). Where health practitioners fail to comply with this requirement, a consent obtained from an SDM will not be lawfully obtained, with all of the same consequences as currently exist at law.
From a conceptual perspective, we believe incorporating this obligation into informed consent makes sense. Just as patients should be given the opportunity to understand the risks and benefits of treatment, SDMs should be given the opportunity to understand the test they should apply in considering these risks and benefits. We also believe that the proposed consequences of failing to inform an SDM of his/her obligations (i.e. vitiating informed consent), will be taken seriously by health practitioners and make voluntary compliance more likely. The mechanisms for doing so need not be highly complex – a plain language guide for SDMs would go a long way to at least apprise SDMs of the framework for providing health care consent in Ontario.
Legislatively, we provide an example of how this amendment could be given effect in the HCCA with respect to consent to treatment (proposed new text is underlined):
No treatment without consent
10. (1) A health practitioner who proposes a treatment for a person shall not administer the treatment, and shall take reasonable steps to ensure that it is not administered, unless,
(a) he or she is of the opinion that the person is capable with respect to the treatment, and the person has given consent; or
(b) he or she is of the opinion that the person is incapable with respect to the treatment, and the person’s substitute decision-maker has given consent on the person’s behalf in accordance with this Act. 1996, c. 2, Sched. A, s. 10 (1).
Opinion of Board or court governs
(2) If the health practitioner is of the opinion that the person is incapable with respect to the treatment, but the person is found to be capable with respect to the treatment by the Board on an application for review of the health practitioner’s finding, or by a court on an appeal of the Board’s decision, the health practitioner shall not administer the treatment, and shall take reasonable steps to ensure that it is not administered, unless the person has given consent. 1996, c. 2, Sched. A, s. 10 (2).
Elements of consent
11. (1) The following are the elements required for consent to treatment:
1. The consent must relate to the treatment.
2. The consent must be informed.
3. The consent must be given voluntarily.
4. The consent must not be obtained through misrepresentation or fraud. 1996, c. 2, Sched. A, s. 11 (1).
Informed consent
(2) A consent to treatment is informed if, before giving it,
(a) the person received the information about the matters set out in subsection (3) that a reasonable person in the same circumstances would require in order to make a decision about the treatment; and
(b) the person received responses to his or her requests for additional information about those matters. 1996, c. 2, Sched. A, s. 11 (2).
Same
(3) The matters referred to in subsection (2) are:
1. The nature of the treatment.
2. The expected benefits of the treatment.
3. The material risks of the treatment.
4. The material side effects of the treatment.
5. Alternative courses of action.
6. The likely consequences of not having the treatment. 1996, c. 2, Sched. A, s. 11 (3).
Express or implied
(4) Consent to treatment may be express or implied. 1996, c. 2, Sched. A, s. 11 (4).
Information to Substitute Decision-Maker
(5) Where a person is incapable with respect to a treatment, in addition to the items set out in subsection (2), a consent to the treatment will be informed under subsection (1) only if, before giving or refusing consent to the treatment on the person’s behalf, the substitute decision-maker received information regarding the principles for giving or refusing consent set out in section 21 and received information on applications to the Board under sections 32 to 37.1.
Similar legislative provisions would have to be drafted in order to mandate a parallel obligation on health practitioners to inform SDMs of their obligations in giving or refusing consent to admission to care facilities and/or personal assistance services.
As set out in the above proposed legislative amendment, we also believe that SDMs should receive information on applications to the CCB so that they will be aware of the option to apply for directions, to depart from an applicable prior capable wish, etc.
We recommend that the HCCA be amended to codify the requirement that SDMs be informed of their decision-making obligations, and to also require that SDMs be informed of the availability of the CCB, before giving or refusing informed consent to treatment on behalf of an incapable patient.
F. Implementing these Recommendations
We recommend a comprehensive education program for all health practitioners, with a specific emphasis on those practicing in hospitals, long-term care homes, and retirement homes, as well as community agencies, providing training on the Ontario law of informed consent to treatment and its relationship to advance care planning. This educational program should be tied to funding of health care organizations.
It is beyond the scope of this paper to illustrate the various ways in which this recommendation could be implemented. However, as an example, this recommendation could be implemented by through:
- Health regulatory colleges;
- Regulations under the Excellent Care for All Act[433] provisions relating to Quality Improvement Plans (QIPs):
o These have applied for some time to public hospitals, now apply to community care access centres, and in 2015, will apply to long-term care homes – for primary care settings such as community health centres and family health teams, QIPS are mandated by the local health integrated networks (“LHINs”) through their multi-sector service accountability agreement, the “M-SAA”); and,
- LHINs
o Via multi-LHIN educational initiatives (so as not to duplicate effort and resources by creating different tools); or
o As with the community health centres and family health teams’ QIPs, using the applicable LHIN service accountability agreements such as the H-SAA for hospitals and L-SAA for long-term care homes, to enshrine accountability for such education.
These educational programs could also be enforced through accreditation bodies, such as Accreditation Canada, whose standards for service providers to the seniors’ population relating to advance care planning currently contains some of the legal misstatements identified in this Paper:
7.3 The organization works with service providers to provide information on advance care planning.
Guideline
An advance care directive (or living will or personal directive) is a set of instructions given by individuals that specify which actions are to be taken in the event that they are no longer able to make their own decisions due to illness or incapacity. An advance care directive also appoints a person to make decisions on their behalf. Information on advance care planning includes advice on how to make an advance care plan, appoint a substitute decision-maker, and communicate advance care wishes to family, friends and service providers.[434] [Emphasis added]
The above standard set for service providers to seniors suggests that an advance care directive is a “set of instructions” specifying what actions are to be taken – rather than wishes to be interpreted by the SDM. These standards are in need of revision with regard to Ontario law, and we recommend that accreditation be tied to educational programs on health care consent and advance care planning.
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