This chapter addresses specific areas of the law that could improve access to care in the last stages of life through legal clarification, simplification or improved implementation. The chapter raises many novel issues that Ontarians told the LCO are in pressing need of reform.
While debates about medical assistance in dying are highly publicized, the issues addressed in this chapter raise equal concerns about autonomy, self-determination, beneficence and safeguards against abuse. The Supreme Court remarked in Carter that there is no reason to think persons receiving some of the end-of-life practices addressed here “are less vulnerable or less susceptible to biased decision-making than those who might seek more active assistance in dying”. In fact, the practices reviewed in this chapter are more routine and widespread.
Decisions about whether to receive CPR, withdraw life support, or continue eating and drinking; the availability of supports to ensure culturally safe care; and the legal options for planning ahead – these are all issues that impact a great number of Ontarians.
In this chapter we examine them and others in the following sections:
- Practice Tools for Consent and Advance Care Planning
- Decision-Making Authority over Life-Sustaining Practices
- Certifying Expected Deaths at Home
- Regulating Palliative Sedation Therapy
- Work Conditions of Supporting Professionals
- Accommodations and Supports for Faith and Cultural Communities.
Summary information about these issues has been presented throughout the discussion paper so far, particularly in chapter 2.B, “Recent Debates about Rights Nearing the End of Life”. Underlying legal frameworks relevant to these issues are also explained in previous chapters, such as chapter 3, “The Law and Care in the Last Stages of Life”, and chapter 4, “Ontario’s Laws, Policies and Programs”. Therefore, readers are advised to consult those chapters prior to considering the specific challenges presented here.
For ease of reference, we pose questions for consultation at the end of each section.
B. Advance Care Planning: Developing Strategies and Tools for Effective Implementation
1. The central importance of health care consent and advance care planning
Person-centred decision-making is an essential process for ensuring quality care aligned with a person’s preferences and values.
As the demand for care in the last stages of life increases, so too does the demand for ways to plan for the future, and future decision-making. In Ontario, individuals can engage in a process known as advance care planning. This can include the identification of who they want to make decisions for them when they cannot, and can share wishes, values and beliefs to help their substitute decision-maker with this role, a process known as advance care planning. Advance care planning conversations, and the subsequent consent process, have been demonstrated to improve patient and family satisfaction with end-of-life care. Advance care planning is situated along a continuum with goals of care discussions and health care consent comprising the person-centred health care decision-making process. In combination, these processes ensure alignment between a patient’s values and treatment, lessen family distress, decrease hospitalizations and admissions to critical care, and decrease unwanted investigations, interventions and treatments, among other benefits. Moreover, advance care planning “Respects an incapable patient’s right to self-determination in critical illness and end-of-life”.
Both in this project and in our project on Legal Capacity, Decision-making and Guardianship, the LCO has heard widespread concerns about misunderstandings of the law, and shortcomings in its implementation. In response to implementation challenges, many practice tools have been created to help individuals, SDMs and health care providers implement the existing law consistently and accurately. The LCO’s project seeks to clarify grey areas of the law that are unsettled or contested, such as these. In addition, our project looks at the challenges of effectively implementing the current legislative framework.
2. Increasing demand for practice tools to plan for care nearing the end of life
Conversations about consent and advance care planning have become a cornerstone of palliative care among community advocates and within care settings. Initiatives across many jurisdictions, including Ontario, have been created to promote pre-planning, and health care facilities have developed policies, practices and related forms to encourage (or require) patients to articulate preferences for future health care.
What We Mean by “Practice Tools”
In this project, we refer to the various policies, toolkits and forms for consent and advance care planning that are being used in Ontario care settings as “practice tools” because they are used to put the law of consent and advance care planning into practice.
Although practice tools are about implementing the law, our use of this term does not imply that existing practice tools accurately reflect Ontario’s legal framework. The LCO has heard that there are pervasive challenges with practice tools, which result in confusion among health care providers, the infringement of rights to consent and difficulties carrying out individual preferences about important life decisions.
The purpose of this section is to discuss challenges with existing practice tools for advance care planning, goals of care and health care consent in Ontario, and to consider the possibilities for supporting meaningful decision-making, and effectively implementing the law.
Until now, there was a lack of evidence on practice tools in Ontario. Therefore, the LCO commissioned an expert research paper on this topic entitled, Health Care Consent, Advance Care Planning and Goals of Care Practice Tools: The Challenge to Get it Right.
The authors of that report, Judith Wahl, Mary Jane Dykeman and Tara Walton conducted an extensive review and assessment of practice tools in Ontario, and gathered new qualitative information through interviews and focus groups. Their paper represents the most authoritative resource on this subject in our jurisdiction, and we rely on it considerably in this section.
- To read the full research paper commissioned by the LCO on decision-making practice tools, please visit our website at lco-cdo.org.
3. Legal framework for consent and advance care planning
Chapter 4 of this discussion paper sets out the basic elements of Ontario’s legal framework for consent, advance care planning and substitute decision-making under the Health Care Consent Act, 1996 and the Substitute Decisions Act, 1992. This framework represents a careful balance between needs for efficient decision-making for persons who lack legal capacity, the preservation of patient autonomy, and the ability to respond to changing circumstances.
The LCO is aware that misunderstandings about Ontario’s decision-making laws are common and we recommend that readers consult those parts of the paper before reading this section. That said, here we do provide a brief summary of key aspects of the law and common misconceptions that are essential to our review of practice tools.
i. Processes for obtaining consent and the role of advance care planning
This summary is organized to show how the process of decision-making must take place under the law. The laws that underpin consent and advance care planning emphasize that decisions must always be specific to an individual’s present condition and circumstances. Furthermore, framing decision-making as a process highlights the step-by-step approach that health care providers and decision-makers are required to follow to arrive at a valid decision.
The process for obtaining consent from a patient (or SDM, if the patient is incapable), is paramount – it enables health care providers to deliver quality care, protects them from liability, ensures that decisions are informed, and gives effect to the patient’s rights and preferences.
It is important to note that advance care planning is distinct from and instrumental to the process of obtaining consent. It allows a person to either confirm the default SDM identified in the HCCA or designate an SDM of his or her choosing, and to guide the SDM in making decisions that align with the person’s wishes, values and beliefs. The SDM must exercise his or her judgment in applying those wishes, values and beliefs to the context of a specific decision. There may, for example, be circumstances where an expressed wish is simply impossible to fulfill.
Advance care planning does not obviate the health care provider’s duty to always obtain consent from a capable patient or SDM. In Ontario, health care providers must obtain informed consent from a patient or SDM, before providing treatment, except in very limited cases of emergency.
Health care providers must engage with patients to explain their health condition, discuss their goals and consider the options for treatment. Informed consent from the capable patient is required by law and is the first priority in the decision-making process. If health care providers have reason to believe a patient is incapable, they must assess the person to determine incapacity before turning to an SDM to make decisions on his or her behalf.
When an SDM is authorized to make decisions on an incapable person’s behalf, he or she must follow the procedure for decision-making set out in the HCCA. This begins with following the person’s wishes expressed while capable, if they apply to the circumstances and are possible. A person’s wishes may be expressed orally or in written form, such as a Power of Attorney for Personal Care (POAPC). Later wishes, if expressed while capable, prevail over earlier wishes. This underscores the importance of advance care planning as a means to guide SDMs in making decisions on behalf of incapable patients.
If the person has no known prior expressed wishes that meet these criteria, then the SDM must make decisions in the person’s best interests, taking into account a variety of factors, including the person’s well-being, values and beliefs.
Health care providers have a responsibility to give the patient and SDM all of the information necessary for consent to be informed. The HCCA stipulates what types of information this includes. Consent that is not informed does not constitute legal consent under the HCCA.
Finally, consent to treatment decisions can be obtained immediately before the treatment is administered or through a plan of treatment. A plan of treatment is a plan that is developed by one or more health care providers to deal with health problems that are present or likely in the future given the person’s current health condition. Plans of treatment provide for the administration of various treatments or courses of treatment, in light of the person’s current health condition.
Plans of treatment should not be confused with advance care planning. Because plans of treatment require informed consent, both patients and SDMs can consent to a plan of treatment, whereas only a patient can engage in advance care planning.
ii. Relationship of “goals of care” to the legal framework
Another central concept to the health care decision-making process is that of “goals of care”. Health care providers may use the term “goals of care” to represent a framework that is relevant to decision-making for the contexts of serious or critical illness. The language of goals of care is not found in the HCCA or SDA, and there is variation among clinicians in understandings of the overall purpose, expected outcomes and approach to goals of care discussions. The LCO has been told that conflation of goals of care discussions with decision-making processes under the law is resulting in confusion.
Dr. Jeff Myers, Dr. Leah Steinberg and Dr. Nadia Incardona explain that there are two main “conceptual orientations” for “goals of care” discussions: treatment focused and person-focussed. Treatment-focused approaches understand the purpose of “goals of care” discussions as