VI. Specific Challenges to Accessing Care in the Last Stages of Life

////VI. Specific Challenges to Accessing Care in the Last Stages of Life
VI. Specific Challenges to Accessing Care in the Last Stages of Life2017-05-29T01:15:33+00:00

A.    Introduction

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”.[486] 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:

  1. Practice Tools for Consent and Advance Care Planning
  2. Decision-Making Authority over Life-Sustaining Practices
  3. Certifying Expected Deaths at Home
  4. Regulating Palliative Sedation Therapy
  5. Work Conditions of Supporting Professionals
  6. 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.[487] 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.[488] Moreover, advance care planning “Respects an incapable patient’s right to self-determination in critical illness and end-of-life”.[489]

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.[490]

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.[491]

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.[492]

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.[493]

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.[494]

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.[495] 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.[496] 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.[497]

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.[498] 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.[499] Plans of treatment provide for the administration of various treatments or courses of treatment, in light of the person’s current health condition.[500]

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.[501]

 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.[502] 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 eliciting treatment decisions, such as a transfer to palliative care or recording a wish not to receive CPR in a plan of treatment.[503] Person-focused approaches consider goals of care discussions as having a conversation about a patient’s personal life preferences and goals for for their care in preparing for subsequent legal decision-making.[504]

In the first interpretation, goals of care discussions may be conflated with legal decision-making under the HCCA and SDA because they are focused on reaching a specific treatment decision. This confusion is understandable because other jurisdictions use the term expressly to denote legal decision-making.[505] However, the LCO has heard that this definition could increase misunderstandings about Ontario’s unique legal framework and thereby systemically undermine informed consent.

In the second interpretation, goals of care discussions are not aimed at reaching a specific treatment decision.[506] Instead, the focus is on identifying what is important to the patients, how they understand their condition, and creating a deeper understanding between health care providers, patients and SDMs about the relationship between care and achieving the patient’s goals in alighment with their personal values. In this interpretation, goals of care discussions aim to bring to bear a person-focussed approach to formulate meaningful preferences. These preferences are the foundation for later discussions, which address specific decisions (and require informed consent). In this sense, goals of care discussions can potentially improve informed and person-centered decision-making. Myers et al. explain,

The purpose [of goals of care discussions] would be to prepare for decision-making by gaining an appreciation of who the person is, how their values are reflected in the goals he or she has for their care and how these align with both the clinical picture and treatment approaches being considered. Elements of the discussion may include an exploration of the person’s past experiences, hopes, values, priorities, perception of quality of life and what he or she considers important. The clinician clarifies what the person understands about the meaning of the current condition, how the person would define and describe the goals he or she has for their care (i.e. being able to do or experience something) as well as the meaning and role for these goals.

Approached in this way, the [goals of care] discussion enables a clinician to elicit how the patient views his or her own clinical picture. It may illuminate misinformation and misunderstandings as well as any [goals of care] that are incongruent or even incompatible with the clinical picture as it is understood by the clinician.[507]

The authors of the LCO commissioned paper on practice tools for decision-making, Wahl et. al., favour the second interpretation of goals of care “as the best ‘fit’ for the Ontario legal framework for health decision-making”.[508] And the LCO agrees. Goals of care discussions can assist both health care providers and decision-makers grasp what types of care should be considered and proposed before seeking informed consent, in light of what is important to patients and is possible to reach their goals:

Once information needs have been met and using a person-focused approach the clinician understands the patient’s [goals of care], a decision-making discussion can then ensue. This involves exploring which treatments and care decisions are best aligned with these goals. Thus, person-focused [goals of care] discussions are precursors and fundamental to decision-making discussions.[509]

While goals of care discussions have the potential to improve the quality of care nearing the end of life, they are not legal decision-making. Therefore, we suggest they should be seen as a foundation for high-quality, informed consent under the HCCA and SDA.

iii. Implications of Ontario’s decision-making process for practice tools

 The legal process for obtaining informed consent and engaging in advance care planning conversations has several nuanced implications. Understanding these implications is necessary to reviewing existing practice tools and considering whether these or new practice tools can reflect the law.

As we explain later in this section, there are many practice tools that do not accurately reflect the law due to misconceptions about the parameters of consent and advance care planning as well as goals of care. The following five key implications of Ontario’s process for decision-making should, therefore, be borne in mind as we move forward in the project:

  1. Advance care planning conversations, goals of care discussions, and informed consent are distinct processes that form a continuum
  2. Advance care planning allows individuals to plan ahead for possible legal incapacity to consent to treatment
  • Through advance care planning, individuals can confirm or identify their SDM for treatment decisions,
  • Advance care planning enables individuals to articulate their values, wishes and beliefs with respect to treatment
  1. Conversations about goals of care create a space to share information about a person’s condition and to articulate person-centered life goals
  • Discussing goals of care creates a foundation for later decision-making through Ontario’s legal framework for informed consent
  1. Within legal decision-making, consent is distinct from advance care planning
    • Receiving consent from a legally capable person is the first priority for health care providers proposing treatment
    • Capable individuals must give or refuse consent themselves; decisional authority cannot be delegated to an SDM or provider for a capable person
    • Health care providers must presume a person is capable of making decisions and determine that a person is incapable before turning to an SDM
  1. Health care providers may obtain consent from the capable patient or their SDM (if incapable) for a course of treatment by proposing a plan of treatment that is tied to the person’s current health condition
  2. Conversations with health care providers about information necessary to make a decision are an integral part of the consent process
  3. The decision-making process is dynamic and ongoing – consent is specific to a particular decision and must be updated when new information becomes available. An individual can change or withdraw their consent at any time.

A further implication of the process for legal decision-making is that individuals cannot bind themselves to future treatments by drafting a “directive” to health care providers. The purpose of advance care planning in Ontario is for the capable patient to delegate an SDM who would give or refuse consent on their behalf that would be informed, contextual and aligned with their preferences, should they become incapable.

In the LCO’s project on Legal Capacity, Decision-Making and Guardianship we reviewed proposals to reform Ontario’s laws to permit directives for future care that are available in other jurisdictions. However, the interim report suggests that Ontario’s legal framework strikes an appropriate balance that emphasizes the role of the SDM in interpreting and conveying prior capable wishes and in providing informed consent as particular issues arise.[510]

Consequently, any practice tools that could be used in Ontario should avoid relying on tools in other jurisdictions that permit directives that purport to speak directly to health care providers. Instead, the LCO believes any possible practice tools must align with the language of the HCCA and SDA, and should promote consent and advance care planning as a nuanced, dynamic and ongoing process.

4.      Challenges with existing practice tools for decision-making

i.  Practice tools being used in Ontario care settings

There are myriad practice tools that health organizations, ethicists and providers have created or adapted from online and other sources that are being used across care settings. During the LCO’s background consultations, stakeholders described practice tools as belonging to several groups, including the following:

Levels of care forms: tick-box forms regularly used on admission to long-term care homes to record preferences for interventions nearing the end of life based on standardized categories.

DNR Confirmation Form: official form created by the MOHLTC to instruct emergency responders not to resuscitate a person residing in the community or long-term care, when they are called into the situation. The DNR Confirmation Form has a narrow scope and has no legal force in other situations.[511]

DNR and No-CPR orders: recorded in a patient’s chart in hospital to document that CPR is not indicated or that consent has been given to withhold CPR (see section C, below, for disputes about legal authority to make these orders).

Advance care planning policies, guides, forms and kits: highly variable documents that may be available online and used across all care settings.

Goals of care forms: forms relating to documenting goals of care that are often used in the palliative care setting.

Packaged tools: usually containing information and forms on overlapping areas, such as advance care planning, goals of care, and consent.

As the above list suggests, there is no single practice tool being used for consent and/or advance care planning in Ontario. Rather, there are numerous tools that have been generated through discrete initiatives. The LCO commissioned paper on this topic by Wahl et. al. reviewed and assessed over 100 such practice tools.[512] The practice tools they reviewed had different focuses (e.g., consent, advance care planning, goals of care) with only 18 tools overlapping on two or more areas.[513]

There is “no one voice of ‘authority and no one ‘regulatory body’” that coordinates resources for health organizations and providers.[514] Because the health care system is fragmented across sectors, providers may receive inconsistent direction about how to prioritize and integrate consent and advance care planning into their practice. As a result, “health care practitioners and others on the frontline occasionally receive mixed messages about what is a good practice in respect to [health care consent, advance care planning and goals of care]”.[515] That is, the proliferation of practice tools, as well as the inconsistencies among and frequent inaccuracies in these tools, have the same roots: Ontario’s decentralized approach to this area, which leaves institutions and professions searching for clarity and guidance.

We address specific problems with existing practice tools that flow from these concerns below.

ii. Problems with existing practice tools

The LCO received comments from health care providers, ethicists, lawyers and community organizations about pervasive problems with existing practice tools in Ontario. We heard that practice tools are being characterized as mandatory forms in many care settings, especially long-term care homes, even though advance care planning is a voluntary process. The sheer number of and inconsistencies in practice tools is cause for confusion and, generally, reduces their credibility when shared across different care settings (for instance, when a “levels of care” form is taken to hospital).

Additionally, we were told time and again that many practice tools do not accurately convey the law of informed consent and advance care planning in the province – they are being proposed as consent “directives” (which have no legal basis in Ontario), may ask SDMs to express wishes on a person’s behalf, and list the wrong hierarchy of SDMs under the HCCA, among other concerns.

The LCO commissioned research by Wahl et al., confirms there are many problems with practice tools through their empirical assessment of a large sample of documents and consultations. We recommend that readers refer to their paper directly on our website for detailed information, but highlight at least some of the challenges they observed below:

  1. Lack of accuracy with respect to all elements of the law, especially informed consent: Many practice tools contain legal errors about Ontario’s legal framework.[516] In particular, they do not emphasize the priority of obtaining consent as a dynamic and ongoing process that begins with engaging the patient. Most practice tools do not explain the respective rights and responsibilities of health care providers, patients and SDMs.[517] Some list the SDM as the “next of kin”, rather than follow the list of mandatory SDMs under the HCCA. Moreover, practice tools may seek to have an SDM express wishes on the patient’s behalf, which is not permitted by law.[518]
  1. Incorrect use of tools to obtain consent or to limit treatment options: Practice tools are frequently used to obtain consent to treatment, including the withdrawal and withholding of treatment, in a manner that resembles a “directive” to health care providers.[519] Practice tools are often used to solicit a specific outcome or treatment decision (e.g., consent to no-CPR), rather than focusing on the decision-making process. However, unless the document is a valid plan of treatment (see definition above), individuals cannot consent to future treatments; they can only express wishes to be interpreted by an SDM should they become incapable.
  1. Missing connections between advance care planning, goals of care and informed consent: There are crucial misunderstandings reflected in practice tools about the intersection of advance care planning, goals of care discussions and informed consent.[520] Currently, goals of care may be treated as consent or advance care planning, when each should be considered separately, as part of a continuum.[521] Consent and advance care planning may also be conflated.[522] This hampers the appropriate use of practice tools and further compounds inaccuracies about the respective roles of health care providers, patients and SDMs.
  1. Reliance on documents obtained elsewhere: A treating health care provider is responsible for ensuring that informed consent has been obtained. This includes the responsibility to confirm consent that was previously expressed to another care provider before being transferred elsewhere. [523] Practice tools are particularly problematic where they are used to indicate a person has consented to withholding life-sustaining measures because the quality of information provided to the patient cannot be ascertained and the circumstances may have changed. [524] An example is the misuse of DNR Confirmation Forms which are only intended for emergency responders.[525] These forms are a narrow solution to a practical problem (to fill a gap in emergency responders’ scope of practice); yet they are being used in hospitals as confirmation of DNR status on admission, which may not reflect the person’s changed health condition and is simply not legally authorized.[526]
  1. Limited legal review: The involvement of legal professionals in reviewing practice tools appears to be rare.[527] Ethicist and health care providers may be asked to review documents or are retained to manage projects to develop tools, but lawyers are not regularly retained or included as part of the teams.[528] Also, although long-term care homes are required to have documents containing consent and advance care planning matters certified by a lawyer to ensure compliance with the law, this does not appear to consistently happen in practice.[529] The MOHLTC inspection protocols for long-term care homes also do not appear to require specific review of this requirement, although inspectors do look at regulated documents when a complaint comes in or a concern is identified during a Resident Quality Inspection related to resident charges or other concerns where a regulated document is used.[530]

While there are other challenges associated with practice tools, the role of education about the law is a final challenge that we draw attention to at this moment, reserving more discussion of these issues to our conversations with members of the public in our dedicated consultation phase.

We encourage you to contact us about your experiences with additional challenges with practice tools that would add to our review.

iii. The role of education about the law

During background consultations to this project, as well as more extensively during the LCO’s multi-year project on Legal Capacity, Decision-Making and Guardianship, there was a widespread perception among stakeholders that misunderstanding of this area of the law is endemic at all levels, and that this is causing significant and serious misapplications of the law.

Education is one response to this widespread misunderstanding, and many stakeholders have emphasized the importance of more effective and extensive education in this area.

However, it is important to keep in mind that education, on its own, is not a panacea to resolving the issue if the forms and tools that professionals are using are incorrect, if standard processes do not include appropriate mechanisms for consent, or if there are systemic disincentives or barriers to proper implementation of the law. That is, education is just one component of any broader initiative to ensure effective implementation of Ontario’s laws for advance care planning and consent.

That said, a prominent theme in the LCO’s background consultations and external research is the lack of education among health care providers and members of the public on advance care planning, goals of care, and consent. Health care providers have been described as “having basic knowledge” of these processes, “but not always recognizing the distinction between these concepts”.[531] Knowledge translation from concept to practice has been found to face difficulties.[532] Incorrect or deficient practice tools can also drive inappropriate habits.[533]

The LCO’s project on Legal Capacity, Decision-Making and Guardianship includes an examination of education about the law, which we rely on in this project. Our interim report in that project made thoroughly researched findings about gaps in education following multiple years of consultations across the province. It also makes recommendations on solutions to remedy this problem.

For ease of reference, below we provide you with an overview of key findings and draft recommendations in that project, which are also relevant here.

  • To read more about the LCO’s project scope, please see ch. 1.C, “The project scope incorporates ongoing developments,” and ch. 1.D.2, “Project development, research and consultations.”

 LCO’s proposals affecting education about the law

 The LCO’s Legal Capacity, Decision-making and Guardianship Interim Report found there is insufficient education and guidance for providers who assess capacity for treatment decisions.[534] A lack of clear standards under the HCCA, together with shortfalls in education within some professions, has led to confusion and anxiety around assessments.[535] Furthermore, there is limited awareness among many providers about their obligations to assess capacity and provide rights information to patients whom they determine to be incapable.[536]

Taking into account these and other factors, the LCO proposed that official guidelines be developed for assessments under the HCCA. We suggested a number of basic principles and procedural rights to be included in these guidelines.[537] We made recommendations on how the provision of rights information to patients could be reformed through requirements for minimum standards under the HCCA.[538] Also, we suggested that the HCCA be amended to include a clear and explicit duty on health care providers to inform SDMs of their roles and responsibilities, stating that the creation of a standard form may support them in this regard.[539]

Other pertinent recommendations relate to outreach, education, information, quality assurance and the allocation of regulatory authority over these matters. Within the constraints of this discussion paper, we cannot describe all of the LCO’s proposals. We invite readers to access our reports for more details, but highlight that our recommendations address the roles of the following institutions in strengthening these areas based on their mandates:

  • Professional educational institutions
  • Health regulatory colleges
  • Health Quality Ontario
  • Local Health Integration Networks
  • Ministry of Health and Long-Term Care.[540]

For instance, the report suggests that professional educational institutions re-examine their curriculum and consider strengthening coverage of issues related to capacity, decision-making and consent.[541] Additionally, we proposed that health regulatory colleges include issues concerning these areas of the law as a priority in their quality assurance programs, including for the identification and assessment of core competencies.[542]

Our recommendations in the capacity and decision-making project also propose the Government of Ontario to lead the development of an overarching strategy for outreach, education and information to be delegated to an appropriate institution.[543]

This last recommendation was intended to benefit professionals who advise on and apply the law as well as users who are directly affected by capacity and decision-making. Thus, any future institution would facilitate public education and professional education for health care providers and others relating to capacity and decision-making.

  • The LCO’s final report on capacity and decision-making was released in March 2017. It can be accessed on our website at lco-cdo.org.

5.      Opportunities to improve understanding of the law of consent and advance care planning

The LCO was asked to consider strategies to overcome the problems arising from multiple, inconsistent and inaccurate practice tools being used for decision-making nearing the end of life. This project does not reconsider the decision-making process for informed consent and advance care planning in Ontario.

We believe the HCCA strikes the right balance in putting consent front and center by first requiring informed consent from a capable person. Should the person become incapable, having an SDM interpret and convey prior wishes, values and beliefs in the circumstances at hand promotes the patient’s autonomy and self-determination. It also reduces the risks inherent in binding instructions for future care that cannot be properly understood outside a person’s current health condition.

Therefore, our task concerns the translation of Ontario’s laws for consent and advance care planning into practice for health care providers, patients and SDMs. This task raises a number of questions that we would like to investigate through further consultations.

The first question relates to whether creating standardized practice tools would be desirable or, even, possible to implement Ontario.

There are several jurisdictions in Canada and the US that have created standardized practice tools, such as the Alberta Health “Green Sleeve” package, which contains a “Personal Directive” (to designate an SDM) and “Goals of Care Designation” (which is recorded as a medical order).[544] However, these jurisdictions, including Alberta, have different laws than Ontario and they would not meet our standards for informed consent.[545]

Another example are the British Columbia Fraser Health Authority materials, which again do not reflect Ontario law because of differences in legal distinctions between consent and advance care planning, and Ontario’s emphasis on consent as an ongoing process.[546]

Given that Ontario’s laws require a continuous decision-making process that is always context specific and changeable, the LCO wonders whether standardized documents could uphold the law.

Following their expert review of Ontario’s legal framework, existing practice tools and stakeholder experiences, Wahl et al. conclude that “a set of standardized practice tools would not be possible”.[547] To begin, they explain that the business of practice tools is too widespread and entrenched that it would be impossible to stop. Second, they find that “there is no one set of ‘perfect’ practice tools” that would meet all needs for different types of health care services.[548]

Depending on what we hear during our consultations in this project, the LCO’s second question asks what alternatives to the design of standardized tools could be pursued. Wahl et. al. propose the implementation of a systemic approach that seeks to shift behavior within the health care system, including health care organizations and providers, and members of the public. They focus on four key elements:

  • Using HCCA terminology in all existing practice tools
  • Educating all stakeholders
  • Ensuring legal accuracy of all practice tools
  • Promoting compliance with the law through enforcement methods.

The authors recommend a multipronged strategy to creatively integrate these aspects of systemic change that engages all levels of governance, including the MOHLTC, LHINs, HQO, health regulatory colleges, long-term care home operators, the Patient Ombudsman, accreditation bodies and others.

It merits noting briefly here that there are significant efforts underway within community organizations in Ontario to gather and assess existing practice tools against the legal framework, and to coordinate knowledge sharing about best practices.

For example, the ACE and the HPCO Health Care Consent and Advance Care Planning Community of Practice are two centres of excellence for integrating Ontario’s laws into practice into practice tools. In addition to a centralized leadership advisory team, which includes an ACE representative, the HPCO initiative includes regional leaders, representing each of the province’s regional LHINs.[549] Both ACE and the HPCO community of practice review practice tools, disseminate public legal education and host workshops for service providers.[550] Therefore, strong efforts for creating systemic change are apparent in the province, though perhaps not to degree that would be required to generate a full culture shift.

The LCO would be interested to learn about whether ongoing efforts could be scaled-up to be embedded within other community or regulatory systems. In particular, we would like to know whether our recommendations in the Legal Capacity, Decision-Making and Guardianship project on strengthening information and education could be further detailed in this project to include a dimension relating to quality assurance for practice tools.

A final question that LCO would like to hear more about is the content of any potential practice tools or other approaches to education and implementation. The content of such tools could potentially differ across care settings, while still highlighting a core set of fundamental rights and principles under the HCCA and SDA to be integrated across the board.

Specific objectives for content development might look at how the nature of legal decision-making as a process can be emphasized. Or, whether good communication and goals of care discussions could be better integrated into preparing for decision-making. They might also address ways to incorporate the primacy of informed consent (including plans of treatment) into initiatives focused on advance care planning.

For further examples we direct you to the funded research paper appendix which makes recommendations for content areas by target audience (e.g., health care provider, patients, SDMs, health care organizations).

6.      Questions for discussion

10. How can institutions, professionals and the public be better supported to obtain meaningful and legally compliant health care consent?

11. How can practice tools achieve the goal of providing accurate, consistent and meaningful information about consent and advance care planning?

C.     Decision-Making Authority over Life-Sustaining Practices

1.      Introduction

Many Ontarians have personal experience making decisions about life-sustaining practices from our own health conditions or those of our family and friends. Some of these questions are about whether to receive lifesaving treatment (i.e., CPR) or life-sustaining treatment (i.e., life support). Aside from medical treatment, assistance with the necessities of eating and drinking also becomes increasingly vital nearing the end of life.

Decision-making in these situations is extremely difficult; it relies on confronting and defining our defining values and emotions. It also raises ethical concerns for health care providers who view their role as only providing what they see as clinically beneficial treatment. Sometimes patient and SDM values conflict with those of health care providers when it comes to deciding whether life-sustaining measures should be provided to a person who is nearing the end of life. These situations can be confusing and stressful, especially when the law about who has decision-making authority is unclear.

Adding to the challenge is the difficulty that many of us have in communicating and making decisions effectively in stressful and emotional situations. Patients and families may not be well-prepared for conversations about the end of life. A number of stakeholders have suggested that popular culture encourages unrealistic expectations of modern medicine. In a paper prepared for the LCO, Cartagena et. al. noted that for some patients even speaking about suffering at the end of life was difficult or impossible: it requires individuals to face what is coming, and so requires great courage.[551]

As well, families may be understandably reluctant to discuss with each other the possibility of death. As a result, some families and patients may not be ready to accept the realities of their situation, and continue hope for “a miracle”. Family members may not be prepared for the emotional and ethical burdens of end-of-life decisions: they may find themselves reluctant to shoulder the responsibility for decisions that result in death, even if they believe that such decisions may be for the best or indeed reflect the wishes and values of their loved one.

For their part, some health care practicioners may also find these conversations difficult. Cartagena et. al. identify time, training and resources as constraints on the ability of providers to address the needs of patients and families at the end of life.[552]

The LCO accepts the need to balance the interests of patients, SDMs and health care providers in decision-making, as a general matter, but there are important questions about who has legal authority to make decisions in particular circumstances nearing the end-of-life that need clarity.

Here we review the state of the law on this subject and ethical debates surrounding it. Specifically, we review who has authority to decide whether a person is offered or receives life-sustaining measures in the two areas mentioned above:

  • health care treatment
  • the necessaries of life (i.e., food and water).

In some respects, the law is clear on these issues, but to a large extent the law is unsettled. The ultimate purpose of this section is, therefore, to ask what the law ought to be.

  • For ease of reference, we use the term “life-sustaining practices” to refer to the various types of practices considered in this chapter.

2.      Identifying values and concepts influencing decisions

Decisions about the withdrawal and withholding of life-sustaining practices may influenced by a number of values and concepts, which are briefly outlined below. These values may underpin law, ethical frameworks, or professional obligations. They may also influence the approaches or decisions of patients, families or health providers. These values may have their sources in ethical or legal frameworks, or more broadly in religious or spiritual values.

This discussion is not meant to provide a comprehensive list of relevant values or concepts, or to thoroughly explore any of them. Rather, it is intended to provide some basic starting points for consideration.

Autonomy and self-determination: Autonomy and self-determination are generally acknowledged as central principles in the provision of any treatment, recognizing the fundamental importance of bodily integrity.

The principle of autonomy has been particularly recognized in the context of treatment decisions. In Fleming v Reid, the Ontario Court of Appeal emphasized that “The common law right to bodily integrity and personal autonomy is so entrenched in the traditions of our law as to be ranked as fundamental and deserving of the highest order of protection. … [T]he common law right to determine what shall be done with one’s own body and the constitutional right to security of the person, both of which are founded on the belief in the dignity and autonomy of each individual, can be treated as co-extensive”.[553] The HCCA specifically identifies the enhancement of autonomy among its purposes.[554]

These core principles of autonomy and independence are both reflected in two recent LCO project, the Framework for the Law as It Affects Persons with Disabilites and the Framework for the Law as It Affects Older Adults (the “Frameworks”).[555] The definitions in both Frameworks emphasize that the achievement of autonomy or independence may require the provision of supports, and that autonomy should be understood in the context of the individual’s relationships. This is particularly relevant in the end of life context, as individuals become more frail and family relationships tend to become more important.

Perspectives that favour principles of autonomy and self-determination reveal serious concerns about taking away the “voice” of the very persons whom treatment is intended to benefit.[556] The dying experience is incredibly personal. It engages our innermost sense of identity as individuals, family members and community participants. There are significant apprehensions among some that giving health care providers authority to make decisions about life-sustaining treatment might not adequately capture the importance of non-medical, personal values in the dying process.

In the view of some, as a culture, we may over-burden autonomy, both culturally and legally, particularly at the end of life, when the very nature of the process is one of becoming less autonomous, less in control and less aware. Cartagena et. al. quote one provider as follows:

And when we are in our threat system, we are not utilizing our frontal cortex. Our thinking is very limited and it’s all about ‘How do I make myself safe?’ So if someone is in their threat system, and worried about dying a horrible death, it might make sense in that to say, of course, ‘Hastening my life is going to make sense. That’s going to, it’s going to get it all over with.’ … So in terms of capacity, I think if somebody is in their threat system, they might make a decision that is different than they would if they were actually in the wise part of the brain, not feeling isolated and alone, feeling connected to other people and connected to their own strength. [557]

Providers also pointed out that many other cultures do not place such a heavy emphasis on autonomy, and that it may be a disservice to the end of life experience of some individuals to automatically assume that autonomy should override other values.[558]

Beneficience: The principle of beneficence refers to the ethical and professional obligations of a health care provider to alleviate suffering and provide treatment that benefits the patient. Similarly, the principle of non-malfeasance requires health care providers to refrain from providing treatment that would harm the patient.[559]

 The Manitoba Law Reform Commission highlights that the primary goal of medical treatment is to restore or maintain patient health as much as possible, maximizing benefit and minimizing harm.[560]

In a paper commissioned by the LCO on suffering and capacity at the end of life, the authors emphasized that providers may experience moral distress from the provision of non-beneficial treatment that causes suffering.[561]

 Utility: Concepts of utility are often referenced in discussions of beneficience, and the two are sometimes confused or conflated.

Where a proposed treatment is useless or ineffective, it may be inappropriate to offer or continue it. The Manitoba Law Reform Commission helpfully distinguishes two aspects of “futility”:

Physiological futility describes a treatment that will not work or one which cannot achieve its desired goal. It is largely a matter of clinical medical judgment. Qualitative futility introduces the highly controversial concept of treatment which is not worth doing or one that will not produce a desirable outcome. The word futile tends to emphasize the qualitative connotation of the word and suggests that a predominantly value laden judgment is being made. This has led to the term falling into disrepute. In particular, it generates discomfort in vulnerable groups such as persons with disabilities and the elderly.[562]

The Manitoba Law Reform Commission suggested that a more helpful approach is to focus on “medical inappropriateness”, as emphasizing the clinical aspects of decision-making.

Both the concepts of beneficience and utility are grounded in the health care provider’s expert clinical judgment and standards of practice.

Understanding the potential application of these principles requires basic knowledge about potential physiological and social consequences of life-sustaining treatment as well as commonly held beliefs within the health profession. In Ontario, there is no legal definition of what constitutes utility, medical appropriateness, beneficence and malfeasance in this context.

Distributive Justice: In a recent paper, Downie, Wilmott and White identified distributive justice as a relevant consideration in withdrawal and withholding of potentially life-sustaining treatment. No health system has unlimited resources, and resources such as intensive care beds are expensive and in limited supply. The authors emphasize that “It is not immoral to ration resources. It happens frequently and is necessary: no country can afford to provide all that is medically possible to everyone …. If just policies are in place, then it can be ethically defensible to deny treatment to some individuals.”[563]

In considering the concept of distributive justice, it is important to acknowledge the concerns of, for example, older persons and persons with disabilities. Negative and stereotypical assumptions about the quality or value of the lives of particular groups could inappropriately influence decisions about the provision of life-sustaining treatment. The Framework for the Law as It Affects Older Adults, for example, highlights attitudes that see older persons as having nothing further to contribute and as simply waiting for death.[564]

Value of life: The value of life is a fundamental starting point in any discussion of the withholding and withdrawal of life-sustaining treatments. In some cases, this value draws on religious understandings of the sacredness of life, but it also has roots in broader ethical and legal frameworks that see life as having intrinsic value. In Rodriguez v. British Columbia (Attorney General), the Supreme Court emphasized that the sanctity of life must be considered, along with liberty and security of the person, in weighing issues related to the end of life.[565]

In some decisions, these values will be harmonious. In others, there will be tensions between them. Downie, Wilmott and White have suggested that a clear statutory framework that is addressed through legitimate and accessible processes can go someway to effectively addressing the values that should underlie these difficult decisions. [566]

3.   Decisions about the withdrawal and withholding of life-sustaining treatment

i. Defining withdrawal and withholding of life-sustaining treatment

The withholding of lifesaving treatment refers to allowing death to occur naturally in the face of a life-threatening event, such as a heart attack. Typically, the term is used in circumscribed situations where CPR might be offered. CPR may be given or withheld wherever a person may be located, including a private home, long-term care home or in hospital.

In contrast, the withdrawal of life-sustaining treatment means ceasing life supports that are already being provided, such as artificial ventilation and nutrition in hospital. The result of withdrawing life-sustaining treatment is similar to withholding treatment in the sense that death may naturally ensue.

The withdrawal and withholding of life-sustaining treatment are not synonymous with palliative care. However, they may precede and are intertwined with the receipt of palliative care, including pain and symptom management, and accompaniments.[567]

ii. Areas of legal decision-making authority

In Canada, it is legal for capable persons to refuse life-sustaining treatment and for SDMs to do so on behalf of another person who is incapable.[568]

In the case of Malette v. Shulman, the Ontario Court of Appeal found the common law entitles capable persons to refuse lifesaving treatment, consistent with rights to autonomy and self-determination.[569] The Supreme Court has also recognized the legality of consenting to these end-of-life practices in several cases.[570] Most recently, the Supreme Court affirmed in Carter that although death may result from a person’s decision, this does not vitiate the right to self-determination.[571] The HCCA also codifies the right to refuse treatment.[572]

The law is clear that individuals (or SDMs) have the right to refuse life-sustaining treatment. However, the law less clear – or at least contentious – as to whether health care providers are required to propose treatment that they believe would not benefit the patient in the first place, and whether patients (or SDMs) can insist on treatment when health care providers do not agree.

For instance, can health care providers choose not to offer CPR if they believe it would not benefit the patient? Can SDMs demand that all treatments be provided to do everything possible to prolong a patient’s life?

In these situations, “The problem is that of conflicts between patients’ (or families’) interest in determining their medical treatment and physicians’ interest in not being required to practice medicine contrary to their professional ethics”.[573]

iii. Competing perspectives on legal decision-making authority

There are two main competing perspectives on who should have decision-making authority over the withdrawal and withholding of life-sustaining treatments.

Some claim that health care providers should have authority to choose what treatments are offered, based on their clinical judgment about what would be beneficial to the patient. Others claim that health care providers must offer life-sustaining treatment, so that patients or SDMs can themselves decide.

These approaches are not always at odds: in a given case, they may be aligned where patients or SDMs agree with health care provider views about what beneficial treatment would entail.

Nonetheless, conflicts do occur between health care providers, patients and SDMs about whether life-sustaining treatment should be provided. The LCO has observed that conflicts are especially common where the most vulnerable person in the dispute – the patient – is unconscious or otherwise incapable and a decision must be made on his or her behalf.

A person who is seriously frail might recover from a health event with CPR, but remain in the ICU until death. Someone on life support might not regain consciousness and decline indefinitely, developing complications along the way. Others might not be able to live as independently as before receiving treatment. Still others might fully recover their physical and psychological abilities. These are examples of situations that health care providers, patients and SDMs might judge differently in terms of quality of life, and the benefits or harm of treatment.

In the clinical environment, health care providers may have their own definitions of beneficence and malfeasance. According to an expert study commissioned by the LCO, “Canadian clinicians generally share similar definitions of ‘non-beneficial treatment’”.[574] Citing prior qualitative research the authors, Downar et al., explain

…ICU-based physicians, nurses and respiratory therapists generally defined non-beneficial treatment to be “the use of considerable resources without a reasonable hope that the patient would recover to a state of relative independence or be interactive with his or her environment”. A subsequent survey found that the most commonly accepted definitions of non-beneficial treatment were: “advanced curative/life-prolonging treatments that would almost certainly result in quality of life that the patient has previously stated that he/she would not want” and “advanced curative/life-prolonging treatments that are not consistent with the goals of care (as indicated by the patient)”.[575]

Thus, Downar et. al. explain that health care providers often take patient values into account when determining beneficial treatment. Those authors acknowledge that, where patient values are unknown or where health care providers perceive known values to be unrealistic or incorrectly conveyed, patient values cannot always be easily incorporated into the health care provider’s assessment.[576]

In general, health care providers need not offer treatment that is not clinically indicated: “Physicians ought not to prescribe antibiotics for viral illnesses [or] perform therapeutic surgery without clinical indicators of illness or injury”.[577] Moreover, as we’ve explained previously, there is no positive right to health care in Canada.

However, as the Manitoba Law Reform Commission (MLRC) describes in its 2003 report, Withholding or Withdrawing Life Sustaining Medical Treatment, the health care provider’s power to choose what treatment to offer is undeniably different in end-of-life care:

The sanctity and value of all human life, the profound and irreversible consequences… the personalized circumstances of the patient’s family, spiritual and cultural life and the patient’s fear of losing personal control at the most vulnerable of times explain the emotional and intuitive attraction to the notion of personal autonomy and support for a patient’s right not only to refuse life sustaining treatment but also to demand life sustaining measures.[578]

The LCO also heard that concerns exist about the lack of consistent, transparent standards to assess beneficial treatment.[579] Legal professionals, in particular, have expressed fears about the potential for bias against certain groups who may be frail or vulnerable – such as the elderly and persons with disabilities – when qualitative judgments about quality of life are involved.[580] We heard concerns that in some cases financial resources may be prioritized over the lives of these groups who may be viewed (inappropriately) as less worthy of care. We were also told about possible disregard for faith and cultural beliefs, which health care providers may not always share.[581]

For example, CCB decisions attest to disagreements among health care providers and SDMs due to differing views on the balance between faith and cultural beliefs, quality of life, and perceptions of medical benefit.[582] Moreover, several HPARB decisions evidence allegations made by SDMs that lifesaving treatment was not proposed for their family members due to stigma about older age.[583]

The LCO heard from more than one individual about instances where health care providers placed a “Do-Not-Resuscitate” order in their family member’s medical records in hospital before they were consulted (which would prevent CPR from being delivered in the event of cardiac arrest). Shock and anger were expressed and feelings of unfairness. HPARB decisions also evidence disputes concerning the authority of health care providers to make DNR orders and the role of consent, communication and documentation.[584]

Even advocates who suggest greater authority be awarded to health care providers, speak about the overall benefits of sensitive and open communication with patients and SDMs, better education about the risks of life-sustaining treatments and improved collaborative decision-making methods.

iv. Ontario’s existing legal framework

As alluded to above, decision-making authority over life-sustaining treatment is clear in some areas, but not others.

Specifically, while consent must be obtained to withdraw treatment from a person who is already being treated, the law is unsettled as to whether providers can legally withhold treatment by simply not offering it to the patient or SDM from the outset (or by refusing to provide it on request). That said, some continue to advocate for legal reform in the areas that are already settled.

 

Areas of Debate over Decision-Making Authority

There are multiple areas of ongoing debate about who should have decision-making authority over life-sustaining treatment.

The primary medical treatment that is subject to debate is CPR – does withholding (not offering) CPR require consent from a patient or SDM under the law? Or, can CPR be withheld based on the health care provider’s judgment?

Nevertheless, some advocates also propose that Ontario’s existing laws that require consent from a patient or SDM to withdraw life support should be reevaluated.

 

The most reliable source for Ontario’s legal framework is the Supreme Court case, Cuthbertson v. Rasouli.[585] Otherwise, the jurisprudence is conflicting.[586] Below, we summarize Rasouli and other key sources of law that feature at the center of public debate.

Withdrawal of life-sustaining treatment under Rasouli

 In Rasouli, the Supreme Court confirmed that the HCCA requires providers to obtain consent from a patient or SDM before life support can be withdrawn.[587]

Mr. Rasouli developed an infection causing brain damage after undergoing surgery for a benign tumor. He was first diagnosed as being in a persistent vegetative state, but was later diagnosed as being “minimally conscious”. Mr. Rasouli’s cognitive functioning was severely compromised and he was being kept alive on life support (Mr. Rasouli remains in this condition today).[588] The health care providers treating Mr. Rasouli found that continuing treatment would not benefit him and proposed palliative care to his wife, who refused consent as his SDM. The providers responded that they did not require her consent, claiming that withdrawing life support is not treatment under the HCCA. His SDM then applied to the courts to prohibit the withdrawal of life support.[589]

The Supreme Court interpreted the HCCA’s language to establish that withdrawal of treatment constitutes treatment and, therefore, requires consent. As Handelman and Gordon explain,

based on the HCCA’s definition of treatment, withdrawal of life support is a treatment. It is done for a therapeutic, palliative, or other health-related purpose. And, except in emergency situations, initiating a treatment requires consent – even when the treatment to be initiated is the withdrawal of treatment.[590]

The Supreme Court in Rasouli also confirmed the process to be followed in providing substitute consent under the HCCA, and the avenues of recourse open to SDMs and health care providers when disputes occur. Important aspects of this HCCA process can be summarized as follows:

  • SDMs must adhere to the decision-making process stipulated by the HCCA, which begins with realizing the patient’s prior capable wishes, if they apply to the circumstances. If the patient’s wishes are unknown, not applicable or impossible to carry out, the SDM must make decisions in the patient’s best interests.
  • The best interests test requires a range of factors to be considered, including the patient’s values and beliefs along with the risks and benefits of treatment.
  • Health care providers have an obligation to obtain informed consent from an SDM who complies with the principles for decision-making under the HCCA.
  • If health care providers do not believe the SDM is complying with the HCCA, and are unable to resolve the issue, they can apply to the CCB for a determination of the patient’s wishes or best interests, as the case may be.

For the purposes of the LCO’s project, several elements of this process must be highlighted.

First, Ontario law already seeks to balance the principles of autonomy, self-determination and security with principles of beneficence and non-malfeasance. Beyond considering the patient’s values and beliefs, SDMs must also consider other factors, including whether treatment is likely to improve the person’s condition or well-being and prevent deterioration, and whether the benefits outweigh the risk of harm.[591]

The HCCA does not, however, provide guidance on how these diverse factors should be balanced. Therefore, applying the best interests test under the HCCA (or the patient’s wishes for that matter) can result in very different outcomes, depending on the patient’s wishes, values and beliefs, and medical condition.[592] In fact, unlike Rasouli, in the majority of cases where the CCB was consulted on end-of-life disputes, the CCB adopted the health care providers’ submissions that treatment would not be in the patient’s best interests.[593]

Still, health care providers told the LCO that the best interests test does not sufficiently address the principles of beneficence and non-malfeasance, and that they should have greater authority to make unilateral decisions about life-sustaining treatment. Part of their concern relates to efficiencies in the CCB process, which we discuss in chapter 7 on alternate dispute resolution (ADR). Yet health care providers also object to the prospect that they may be required by law to provide treatment they believe contradicts their professional and ethical responsibilities.

Rasouli is a statutory interpretation case. Therefore, the Supreme Court made no pronouncement on who ought to have decision-making authority based on questions of “philosophical” and ethical legitimacy.[594] Instead, the Court read the HCCA on its face to determine what Ontario statutory law mandates at present.

The Supreme Court did acknowledge the health care providers’ concerns about ethical responsibilities. But, in the end, it found that health care providers cannot be faulted for following the law, and that creative solutions might be necessary where there are unresolvable conflicts between the law and a provider’s ethics:

…a physician may feel that his legal obligation not to withdraw life support is in tension with his professional or personal ethics. Such tensions are inherent to medical practice.

Wherever one tries to draw the line, it is inevitable that physicians will face ethical conflicts regarding the withdrawal of life support. No legal principle can avoid every ethical dilemma. What may be needed is a practical solution that enables physicians to comply with the law and to satisfy their professional and personal ethics.[595]

 

Ongoing debates about withholding CPR

The Supreme Court limited its determination in Rasouli to the narrow set of facts in that case.[596] It did not explicitly find that not offering treatment, such as CPR, requires consent under the HCCA.[597] As a result, debates on whether health care providers have decision-making authority to not offer CPR are highly controversial in Ontario. The LCO’s project is designed, in part, to address some of these controversies and to make thoughtful recommendations.

In its 2016 policy on Planning for and Proving Quality End-of-Life Care, the CPSO recognizes, “The law is currently unclear regarding the consent requirements for a no-CPR order”.[598] There are a considerable number of cases, administrative tribunal decisions and professional guidance documents that have come to contradictory conclusions on this issue.[599] A recent HPARB decision interpreted Rasouli to mean that consent is required before providers place a DNR order in a patient’s chart while in hospital.[600] This case has, in turn, incited critique and activism within the health community.

One of the expert papers commissioned by the LCO for this project canvasses various stakeholder positions on this topic. The authors claim that, in practice, providing CPR has become a “default” treatment for a few reasons. Providing CPR does not require the patient or SDM’s consent, as it is considered an emergency treatment under the HCCA.[601] But the law surrounding not offering CPR it is fraught with ambiguity. Thus, although it is inappropriate to offer non-beneficial treatments as a default in many other contexts, the authors assert there is a “double standard” when it comes to CPR.[602] On the other hand, many health care providers, they say, “wish to avoid CPR in patients nearing the end of life, reasoning that it can cause suffering for no apparent medical benefit”.[603]

At this juncture, it is important to recall that legal authority to decide whether life-sustaining treatment is provided is not equivalent to an outcome, as was the point made in Rasouli over withdrawing life support. The HCCA and Rasouli require consent to withdraw life support because doing so is equivalent to an outcome (likely, death). But not offering CPR in narrow circumstances may fall within the provider’s discretion (i.e., where CPR would not achieve its physiological purpose). If patients and SDMs have legal authority to decide, they may very well choose a natural death and palliative care, especially as social acceptance of these practices grows.

The LCO is aware that providers, patients, SDMs and lawyers have a range of views on life-sustaining treatment generally as well as on who should ultimately have authority to decide whether it is offered.

CPSO’s policy on end-of-life care proposes a compromise of sorts. Acknowledging the law is unclear, it gives process-oriented guidance to physicians. The policy advises as follows:

  • Where physicians wish to place a DNR order in a patient’s chart, they cannot do so unilaterally. Instead, they must discuss this with the patient or SDM and explain why CPR is not being proposed.
  • If the patient or SDM disagrees and insists that CPR be provided, physicians must engage in a conflict resolution process (which the LCO addresses in chapter 7).
  • While conflict resolution is underway, physicians cannot write a DNR order.
  • If an event requiring CPR actually occurs, physicians must provide CPR unless the patient’s condition will prevent the intended physiological goals of CPR from being achieved (i.e., providing oxygenated blood flow to the heart and brain).
  • Aside from informal conflict resolution (such as an ethics consult), if a conflict arises from an SDM’s interpretation of a wish or because the physician believes the SDM is not complying with the HCCA, he or she may apply to the CCB.[604]

The CPSO policy is current as of May 2016 and, therefore, takes into consideration Rasouli, the HPARB decision and stakeholder submissions on the policy. As can be seen from the above, it prohibits health care providers from issuing DNR orders without consent; however, it allows them not to offer CPR if an actual event occurs and CPR will not be physiologically effective. This recognizes the relative time considerations in both cases (there may be time to discuss DNR orders in hospital), and health care provider discretion in narrow circumstances, where a qualitative assessment about quality of life would be less likely.

The CPSO policy has received little comment to date, albeit some have argued that it still does not give health care providers sufficient clarity or flexibility.[605]

v. Achieving legal clarity and consistency

It should be apparent from the CPSO policy and the differences in opinion between withdrawal of life support and not offering CPR that a variety of possibilities exist for law reform. The principles of beneficence, non-malfeasance, autonomy, self-determination and security may yield nuanced solutions to these different types of practices.

The LCO believes the law should be clear and consistent for all stakeholders when it comes to decisions about life-sustaining treatment.[606] Consistency does not necessarily require that each medical practice be regulated in the same way. In some jurisdictions, including Ontario, separate end-of-life treatments are managed differently. But these differences must not be arbitrary; they must reflect a justifiable balance of principles.

Ontario’s existing legal framework includes the HCCA, the Supreme Court’s decision in Rasouli, conflicting case law and various policies. The CPSO’s policy distinguishes between consent requirements for different types of end-of-life treatment. It says that the HCCA and Rasouli require consent to withdraw life support and that DNR orders also require consent, but that not offering CPR in narrow circumstances fall within the provider’s discretion (i.e., where CPR would not achieve its physiological purpose).

Other jurisdictions have confronted the same issues as we do in this project and have come up with a variety of responses.

For example, the Australian state of Queensland has a fairly similar framework to the CPSO policy.[607] Consent is required to place a DNR order in a patient’s medical chart, since there may be time for consultation and discussion. However, health care providers are permitted to withhold CPR without obtaining consent from an SDM in “acute emergencies”, if the patient is incapable, the provider unaware of wishes to the contrary, and the provider reasonably believes that CPR would not be good medical practice.[608] Queensland law sets out further nuanced rules in other circumstances, including the withdrawal of life support with consent. [609]

In the United Kingdom, physicians are generally entitled to determine the appropriateness of life-sustaining treatment.[610] However, physicians must seek judicial direction from the Court of Protection about both the withdrawal and withholding of life-sustaining treatment for patients in a permanent vegetative or minimally conscious state.[611]

There are also many jurisdictions that simply prioritize the health care provider’s discretion.[612] After reviewing a considerable range of reform options, the MLRC recommended this approach, which is now regulated through the College of Physicians and Surgeons of Manitoba.[613] The MLRC’s report was issued prior to the Rasouli case, and it is not certain if this approach would withstand a challenge given the Supreme Court’s decision.[614]

Taking into account experiences in other jurisdictions and Ontario’s particular context, the LCO would like to know whether our current mix of approaches achieves the best possible balance for Ontarians.

In concluding this section, we would like to acknowledge the difficulties addressing this area of the law apart from concerns about education and communication, tools for consent and advance care planning, and dispute resolution. The literature demonstrates a dire lack of education and communication among health care providers, patients and SDMs, alike, as well as the inadequacy of existing strategies to resolve conflicts.

Various proposals emphasize the benefits of these other practices in achieving amicable resolutions among the affected parties:

in most cases, when physicians, patients and SDMs discuss whether or not to provide life-sustaining treatment, all stakeholders are able to reach agreement. Clinicians, patients and SDMs alike show a strong preference for consensus approaches to decision-making rather than unilateral decisions. Disagreements and intractable disputes are relatively rare.[615]

As these issues cut across many other concerns, the LCO has chosen to address them later in the discussion paper (see section D, below, and chapter 7).

  • For more information on Ontarians’ views about decision-making authority over life-sustaining treatment, we invite you to access the report commissioned by the LCO, Downar et. al., “Balancing the interests of patients, substitute decision-makers, family and health care providers in decision-making over the withdrawal and withholding of treatment”, online: http://www.lco-cdo.org.

3.      Decisions about offering the necessaries of life in daily living assistance

i. Defining the necessaries of life in daily living assistance

There are life-sustaining practices aside from what might be considered “treatment” that are common nearing the end of life. In this section we review laws that regulate decisions about offering the necessaries of life in daily living assistance, namely food and water.

Support with eating and drink is different from treatments including artificial nutrition and hydration that may be part of life support although, evidently, they are just as necessary to maintain life. Food and water may be offered to persons receiving care in a private home, long-term care home, retirement home, hospice or even in hospital. During the LCO’s preliminary consultations, stakeholders primarily referred to residents in long-term care, who depend heavily on others for daily living activities.

The issues in this section of this paper arise primarily in the context of persons who have an SDM making decisions about activities of daily living. Where individuals are capable, they may voluntarily stop eating and drinking (VSED). Some capable patients may voluntarily stop eating and drinking as a means of hastening death. [616]

Anecdotal evidence suggests that SDMs have at times instructed nurses and PSWs not to offer an individual food and water in order to comply with prior expressed wishes or their interpretation of the HCCA’s best interests test. A recent British Columbia case, Bentley v. Maplewood, has also brought this issue to public attention (further discussed below).[617]

Therefore, the LCO was asked to examine whether SDMs have the right to refuse consent to the provision of food and water. We were also asked to determine if there is a conflicting legal duty in these situations that require services providers, such as PSWs and nurses, to offer food and water to residents in their care.

It is important in this context to distinguish between offering food and water, and forcing food or water on an individual. The discussion in this section focusses on whether providers have a duty to offer food and water.

Again, the law is unsettled in this area – in this case due to overlapping laws that potentially conflict. We address their interaction by seeking to answer the two questions posed above.

ii.Can SDMs refuse consent to food and water?

 It is normal for persons nearing the end-of-life to lose their appetite or to face difficulties eating and swallowing.[618] They may stop eating and drinking if they choose to do so as a matter of self-determination and physical integrity. Our inquiry about consent to food and water is less about individuals refusing food themselves, than the possibilities for SDMs to refuse consent to food and water on another’s behalf.

The Bentley case, mentioned above, illustrates how this inquiry affects people in reality. In Bentley, family members requested that a care facility cease spoon feeding Mrs. Bentley, an elderly woman in the advanced stage of Alzheimer’s. Mrs. Bentley had previously recorded wishes that if she came to have no reasonable expectation of recovery from extreme physical or mental disability, she wished to be allowed to die, including through “no nourishment or liquids”.[619] She also asked that she be “euthanized” in the event she was unable to recognize members of her family.[620] Against the family’s request, the care facility continued to spoon feed Mrs. Bentley, claiming they were required to provide the “necessaries of life” under provincial legislation and the Criminal Code.

The Bentley case is complex to review for this project because decision-making laws in British Columbia are not the same as in Ontario. In Ontario, a similar case might well have a different outcome. It is also important to remember that the court found that Mrs. Bentley was capable of making her own decisions. Nonetheless, the court made a few findings that could be relevant here.

The court found that nourishment in a care facility constitutes personal care, rather than treatment. It also held that withdrawing food and water from an incapable person is not permitted by law under provincial care legislation because it would amount to neglect. It did not address issues surrounding the Criminal Code.[621]

Below, we address whether an SDM is prohibited by law to consent to the withdrawal of food and water. Here, we first consider whether an SDM could, possibly, refuse consent to nutrition under relevant sources of provincial law.

Health Care Consent Act, 1996

The HCCA addresses various considerations relating to daily living assistance, called “personal assistance services”.[622] This applies only to services provided in long-term care homes. The statute defines personal assistance services to include assistance with eating and drinking. It does, however, exclude personal assistance services from the definition of treatment.[623] As a result, the positive requirement to obtain consent to treatment in the HCCA does not apply to providing food and water. The HCCA also does not contain an explicit provision requiring that a provider obtain consent before giving daily living assistance, which contrasts with the requirement to obtain consent to treatment.[624]

Arguably, the requirement for consent is nonetheless implied in the HCCA. For instance, the HCCA sets out who can provide substitute consent for personal assistance services. The HCCA also permits individuals to express prior wishes about personal assistance services, and requires SDMs to follow a similar process for substitute decision-making as they would for treatment.[625]

Long-Term Care Homes Act, 2007

The Long-Term Care Homes Act, 2007 requires long-term care homes to obtain consent to assess residents in determining their “plan of care”, and states, “Nothing in this Act authorizes a licensee…to provide care or services to a resident without the resident’s consent”.[626] The “Residents’ Bill of Rights” also affirms the right of residents of long-term care homes to participate fully in the development, implementation and revision of their plans of care, and in any decision regarding any aspect of his or her care, as well as to give or refuse consent to any treatment, care or services for which consent is required under the law.[627] Therefore, a resident’s consent is required to provide care, and an SDM can provide substitute consent for an incapable person in a long-term care home. It is also helpful to place these provisions in the broader context of the duty of the licensee not only to protect residents from abuse but to ensure that they are not neglected by the licensee or by staff.[628]

Substitute Decisions Act, 1992

Daily living assistance under the SDA is called “personal care”.[629] The SDA sets out appointment processes for a guardian or attorney for personal care. Personal care under the SDA is not specific to the long-term care setting, it applies to home and community care as well, and it expressly includes “nutrition”.[630] The SDA also states that if a person grants a POA for personal care, the POA “may contain instructions with respect to the decisions the attorney is authorized to make”.[631]

Home Care and Community Services Act, 1994

The Home Care and Community Services Act, 1994 makes a statement about consent that resembles that for long-term care, which is to say that providers cannot “provide a community service to a person, without the person’s consent”.[632] The CCAC Client Services Policy Manual affirms that an SDM may provide consent where a community service involves nutrition.[633]

 

Health College and Association Policies

Most Ontario regulatory college and provider association policies do not specifically address this issue. Although consent is often highlighted as an important and mandatory aspect of care, in general, practice guidelines on care nearing the end-of-life also emphasize providing adequate food and water.[634] One policy advises providers to develop a care plan for “nutritional/hydration approaches” and to “offer fluids and diet as tolerated and as desired by the resident”.[635] The LCO has also heard that facilities adopt conflicting informal policies on whether to continue to offer food and water nearing the end-of-life.

To summarize this section, Ontario’s legal framework implies that an SDM’s consent is required to withhold food and water to a person who is incapable.

In practice, however, the LCO is aware that the relationship between providers and SDMs is much more fluid and consent is not provided on a regular basis for long-term, and home and community care. This could contribute to varied expectations among providers and SDMs about their respective decision-making authority.

 iii. Are health care providers required by law to provide food and water?

Any possible requirements to obtain consent before providing food and water, discussed above, would appear to conflict with other provisions in the Long-Term Care Homes Act, 2007 and the Criminal Code. These statutes seek to ensure that persons who are in a relationship of dependence with care providers are regularly provided with food and water by law.

The Criminal Code imposes legal duties on individuals in stipulated circumstances to provide the “necessaries of life”, unless they have a “lawful excuse”.[636] Food and water fall within the definition of necessaries of life.[637] The relevant Criminal Code provision reads as follows:

Duty of persons to provide necessaries

 Every one is under a legal duty:

(c) to provide the necessaries of life to a person under his charge if that person

(i)  is unable, by reason of detention, age, illness, mental disorder or other cause, to withdraw himself from that charge, and

(ii) is unable to provide himself with necessaries of life.[638]

The application of this provision to the circumstances at hand is not clear.[639] Professor Jocelyn Downie has argued that the “[a]bsence of consent or, even more pointedly, the explicit refusal of the necessaries of life through a clear and explicit instruction… is arguably a lawful excuse” for not providing food and water.[640] Insofar as a “lawful excuse” would mean a criminal offence does not arise, under this interpretation, an SDM could refuse consent to food and water on another’s behalf.

Another source of law which could potentially require providers to offer food and water for some individuals is the Long-Term Care Homes Act, 2007. The Act states that licensees “Shall ensure that residents are provided with food and fluids…”, and the regulations stipulate facilities must offer each resident three meals daily, beverages at regular intervals and a snack in the afternoon and evening.[641] The Act also has detailed provisions to prevent and address neglect that could, conceivably, prohibit the withdrawal of food and water.[642]

Again, one might argue that refusing consent would eliminate concerns about neglect. At the same time, however, it could be difficult to argue that long-term care homes should not continue to simply offer food and water (without force) as required by legislation.[643]

 iv. Achieving legal clarity and consistency

As with our analysis of withholding and withdrawal of treatment, the LCO is concerned that there be clarity and consistency under the law to ensure equal access to care for Ontarians. Currently, there appear to be conflicting laws in Ontario respecting whether SDMs can refuse consent to the provision of food and water. This could, in turn, affect whether individuals can realize their own prior expressed wishes to die in this manner, similar to Mrs. Bentley.

If SDMs cannot refuse consent to the provision of food and water, there could be potential inconsistencies with laws that do permit them to refuse consent to treatment, such as life support. Whether these inconsistencies are principled, not arbitrary, is something to consider for this project.

Not unlike current approaches to regulating different types of life-sustaining treatment differently, providing the necessaries of life at home and in the community could, ostensibly, be regulated separately under the law. Our project asks whether refusing consent to food and water is substantively different from refusing consent to treatment, although the ultimate outcome might be similar.

The LCO would like to hear about how decision-making about the necessaries of life should be regulated from a law reform perspective. For instance, could providing food and water be defined as “treatment” under the HCCA to clarify that consent from a person (or SDM) is required in these situations? Or, could the Long-Term Care Homes Act, 2007 and Home Care and Community Services Act, 1994 be amended to clearly and expressly exclude SDMs from refusing to consent to the provision of food and water?

4.      Questions for discussion

12. There are connecting laws, principles and policies regarding decision making for life-sustaining practices such as CPR, DN, and nutrition. What are the strengths, weaknesses and gaps in Ontario’s current legal framework for decision-making authority over life-sustaining practices?

13. Who should have authority to determine whether life-sustaining and lifesaving treatment (e.g., CPR, DNR) is offered to, or withdrawn from, a patient – the patient (or SDM) or a health care provider? Under what circumstances?

14. Should Ontario regulate the offering of food and water to persons nearing the end of life, including the authority of SDMs to consent to withholding necessities of life?

D.    Palliative Sedation Therapy

1.      Understanding palliative sedation therapy

Palliative sedation therapy is an end-of-life treatment that is clinically and legally accepted in Canada. 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.[644]

The object of this therapy is not sedation itself, but symptom relief.[645] Refractory symptoms are present if all other possible treatments have failed or, in the patient’s circumstances, there are no available or acceptable means to alleviate symptoms.[646] Palliative sedation therapy may, nonetheless, be combined with other palliative care treatments and accompaniments, such as pain management.[647]

Palliative sedation therapy is intended to be a proportional response to symptoms, meaning that the level of sedation and duration vary.[648] There are two main forms of palliative sedation:

  1. Continuous palliative sedation, which involves providing therapy until a person dies as a result of the natural course of illness. Continuous palliative sedation may be clinically indicated in the last days or hours of life. Continuous palliative sedation is not usually recommended for patients who are more than two weeks away from death.[649]
  2. Respite sedation, which is provided temporarily, as needed, and monitored. Respite sedation involves an agreement with the patient about a timeframe for sedation (e.g., 24 to 48 hours), after which the patient is awakened to determine if he or she would benefit from further therapy or if the rest and stress reduction improved the ability to tolerate symptoms.[650]

Palliative sedation therapy raises significant ethical concerns, especially when it is provided continuously. Generally speaking, this treatment engages similar principles to those arising in the context of other end-of-life practices, including beneficence, non-malfeasance, autonomy, self-determination and security (see our discussion of these principles in section 6.C.2).

In addition, as mentioned above, proportionality is a core principle for palliative sedation therapy.[651] Proportionality comes into play when assessing whether palliative sedation should be used from the outset, since it is not clinically indicated when there are less-invasive interventions that could be effective.[652] Proportionality also means that when palliative sedation is used, “the dose of sedatives administered to the patient should not be higher than that needed to alleviate the patient’s suffering”.[653]

The definition of symptoms gives rise to ethical concerns as well. In particular, the presence of psychological (sometimes called “existential”) suffering is a very controversial grounds for palliative sedation therapy.[654] Most guidelines and policies do not recommend that psychological symptoms be considered sufficient for intervention, except in rare cases, and then only in consultation with a palliative care team that can provide advice on alternative options.[655] Nonetheless, psychological suffering is recognized as a contributor to the inability to tolerate physical refractory symptoms.[656] And some argue that short life-expectancy and patient preferences could justify the expansion of therapy to psychological suffering.[657]

Another ethical concern that engages all of the principles listed above is that palliative sedation not be used to hasten death. Although palliative sedation may be provided until the point of death and may sometimes involve the withdrawal of life supports, from an ethical standpoint, it is not intended to hasten death.[658] Sometimes this is referred to in terms of the doctrine of “double effect”: since the intent of the provider administering the sedatives is to control the suffering at the end of life, and not to shorten life, the practice is ethically distinct from the practice of intentional killing.[659]

The principle of proportionality is essential to concerns about hastening death because continuous palliative sedation without life-support could conceivably affect life-expectancy when it is provided to a person whose death is not imminent.

There is a complex relationship between palliative sedation and medical assistance in dying. The LCO has heard that some patients, family and friends do seek to use palliative sedation as a form of medical assistance in dying.[660] The LCO heard there is a risk that palliative sedation could be used for patients who are not eligible for medical assistance in dying, such as those whose death is not reasonably foreseeable or who rely on an SDM to consent to treatment due to incapacity. (On the eligibility criteria for medical assistance in dying, see chapter 4.E.) Some patients may forego palliative sedation now that MAID is available. As MAID is integrated into the legal, policy and practice landscape, approaches to palliative sedation may see some adjustments.

For persons who are nearing death, there is no evidence that nutrition or hydration is physiologically relevant to hastening the death of a sedated person.[661]

Although palliative sedation therapy is clinically and legally accepted, it is not yet regulated under statute or in standardized polices that apply across the province of Ontario. Given that the practice raises concerns about abuse or misuse, capacity and informed consent, and equality in access, the LCO’s project considers whether it ought to be addressed, and if so, how.

2.      Legal framework for palliative sedation therapy

Palliative sedation is not currently the subject of a specific or separate regulatory regime in Ontario. And unlike the withdrawal and withholding of treatment and medical assistance in dying, palliative sedation has not been subject to a constitutional or other legal challenge. Therefore, there is no case law to guide the practice in terms of eligibility criteria, procedural requirements and safeguards against abuse. Moreover, in Ontario there is no statute that purposefully addresses palliative sedation therapy.[662]

The Supreme Court referred to palliative sedation therapy in Carter as a matter of dignity and autonomy in the face of a grievous and irremediable medical condition.[663] In comparing palliative sedation and other end-of-life practices to medical assistance in dying, the Supreme Court did note that palliative sedation raises equal concerns about capacity and decision-making, vulnerability and the possibilities of bias and misuse, remarking “Concerns about decisional capacity and vulnerability arise in all end-of-life medical decision-making”.[664]

There are no special procedural or other requirements for palliative sedation therapy in Ontario.[665] In terms of consent and decision-making, the Health Care Consent Act, 1996 applies to palliative sedation just as it does to other treatment decisions nearing the end of life. Thus, health care providers must obtain consent to provide therapy from a patient or SDM in the patient is incapable. The person (or SDM) must have the ability to understand the information that is relevant to making the specific decision at hand, and to appreciate the reasonably foreseeable consequences the decision.[666]

Applying the same legal framework to palliative sedation as to other treatments is akin to the regulation of withdrawal and withholding of treatment in Ontario, but it differs from medical assistance in dying. In the latter case, there are heightened safeguards against abuse, including the requirements for a second opinion, documented request, signatory witnesses and the presence of mental capacity up until the person receives treatment.[667] In all end-of-life decision-making, capacity is decision-specific.

While there are no statutory or case law requirements for palliative sedation therapy in Ontario, various regions and organizations have adopted policies and guidelines to regulate the practice.

For instance, in 2012 a number of clinicians with the Canadian Society of Palliative Care Physicians developed the Framework for Continuous Palliative Sedation Therapy in Canada. The framework addresses a wide-range of issues including definitions, aims, ethical considerations, decision-making and policy strategies. The framework suggests that palliative care institutions and programs should adopt policies, possibly, in consultation with regulatory and legal authorities.[668] Among other recommendations, the framework proposes enhanced conversations about and documentation of informed consent for palliative sedation therapy.[669]

Further organizational guidance has been provided by CPSO and the RNAO Palliative Care Nurses Interest Group.[670] The LCO located separate guidelines published by three regions in Ontario.[671] We are also aware that some clinicians in Ontario favour standards developed in other jurisdiction, such as the British Columbia, Fraser Health, Refractory Symptoms and Palliative Sedation Therapy Guideline.[672]

Studies have demonstrated that a large majority of Canadian physicians agree on core issues relating to clinical aspects of palliative sedation therapy, such as the kinds of symptoms it is indicated to treat, the exercise of caution around psychological suffering, and the use of certain medications.[673] Nevertheless, the available sources in Ontario and Canada do vary in their level of detail and recommendations.

For example, the Fraser Health guidelines apply to adults age 19 and over, while other documents do not specify age limits, and the LCO is aware that children do receive palliative sedation in practice.

A recent study of an Ontario hospital also revealed a lack of consistency in operational definitions and documentation.[674] The authors found that patient records had no documentation of palliative sedation in 65% of cases, no identification of symptoms in 46% of cases and no records on informed consent in 41% of cases. In cases where consent was documented, “the consent provider was often unclear” and “[t]here were no documented discussions about artificial nutrition and hydration before [palliative sedation] initiation”.[675]

To be sure, the lack of documentation in this one study does not indicate that discussions about palliative sedation had not, in fact, taken place.[676] Nor does it speak to practices in other care settings. Nonetheless, our overall discussion above shows that there are concerns about the existing regulatory framework for palliative sedation in Ontario relating to consent, vulnerability, inconsistent terminology, lack of documentation and fragmentation in standards.

3.      Possible avenues to address challenges with palliative sedation therapy

There are multiple avenues to improve clarity, consistency, safety and other challenges with palliative sedation therapy. Options for reform might include the following:

  • creating a legislative framework
  • elaborating clinical guidelines through a taskforce or network approach (e.g., with OPCN or MOHLTC involvement)
  • requesting that regulatory colleges adopt thorough clinical guidelines.

In considering approaches to clarifying the issues surrounding palliative sedation, it is important to think carefully about both the benefits and the downsides of legislative and non-legislative approaches.

Approaches in other jurisdictions may provide insights into how these options might work. For example, Quebec’s An Act Respecting End-of-Life Care establishes a statutory framework for requesting and documenting palliative sedation therapy. Quebec’s legislation only applies to continuous palliative sedation therapy. It stipulates what must be provided for consent to be “informed”, and requires a request from a patient or SDM to be documented in a prescribed form and filed in the patient’s record.[677]

Alberta has taken a different approach. Alberta Health Services has recommended that a provincial palliative sedation clinical guideline be developed by an expert panel in conjunction with the government and a provincial steering committee that is working on broader palliative care advancements.[678] Alberta’s recommendations are situated within its overall provincial strategy, the Palliative and End-of-Life Care Provincial Framework.

As Ontario moves toward developing our own provincial strategy on palliative care, we may also be able to build on lessons learned from organizational and regional guidelines that are already being used in this province.

4.      Questions for discussion

15. Should Ontario regulate the clarity, consistency and safety of palliative sedation therapy considering the ethical challenges, medical assistance in dying, and the need for safeguards like informed consent?

E.     Managing Planned Deaths at Home

1.      Dying in the comfort of home

A majority of Canadians would prefer to die at home.[679] “Home” in this context denotes a range of settings, including but not limited to a private home, residential hospices, retirement home and long term care homes. “Home” is distinguishable from hospital settings for acute care, such as the ICU.

Despite this preference, several studies demonstrate that hospitals are a common place of death in Canada. In a report commissioned by the LCO, Wilson and Birch found that 41.2% of Ontario residents who died in 2014-2015, died in hospital.[680] Various social determinants have an impact on place of death, and reports by Health Quality Ontario, among others, provide some information on what these may be.[681]

LCO’s background consultation identified two potential contributors to a good home death of a legal nature. These are: the sufficiency of decision-making tools to support consent and advance care planning (which we review in section D, above); and the accessibility of processes to certify that a person has died in the home.

This chapter addresses legal barriers to planning for and managing deaths that are expected to occur in the comfort of one’s own home.

2.      Difficulties family and friends encounter when a person dies at home

When a person dies at home, surrounding family and friends are not always well-informed about what to do to. In Ontario, there are processes that exist to facilitate the direct transfer of the deceased from home by funeral services, namely, the “expected death in the home” (EDITH) protocols and guidelines of the Coroner. However, people may not have planned ahead or know what these processes involve and, understandably, people often call 911 for help.[682]

Once 911 is called, emergency responders become involved – such as the police, ambulance and firefighters – as well as the Coroner’s office.[683] This can lead to distressing and confusing administrative complications that disrupt the natural bereavement process that many family and friends experience immediately after someone’s death.

If family or friends do not call 911 and, instead, contact a funeral home directly, the LCO has heard that funeral services routinely ask family members to obtain a death certificate before they will transport the deceased. However, there are frequent delays in obtaining death certificates that many stakeholders informed the LCO cause suffering for grieving families.

Addressing improved planning and management of deaths that are expected to occur in the home was one of the foremost challenges that stakeholders cited during the LCO’s preliminary consultations. Moreover, while the CPSO was updating its policy on end-of-life, it released a brief paper documenting this as an area as one in need of change.[684]

3.      Legal framework for transferring the deceased to a funeral home

There are two ad hoc tools that have been created in Ontario to aid expected deaths at home: Expected Death in the Home (EDITH) Protocols and Office of the Chief Coroner for Ontario guidelines. This section considers gaps in the legislative framework that have given rise to these stop-gap approaches. We consider EDITH Protocols and Office of the Chief Coroner guidelines in the next section on strategies for reform.

When individuals are at the end of their lives and are able to die naturally at home, rather than in hospital, their family and friends are not required to initiate a police or coroner’s investigation when death occurs. In normal circumstances, a funeral service can transport the deceased away from the home to preare for burial, cremation or other services. In the less usual circumstances, the coroner or police must be notified under the Coroners Act where there is reason to believe that the death was suspicious or requires investigation (e.g., violence, negligence, suddenly and unexpectedly).[685] Otherwise, a funeral service can transport the deceased away from the home to prepare for burial, cremation or other services.

The Vital Statistics Act (VSA) creates some restrictions on how the deceased can be treated. For instance, burial, cremation, funeral services and transportation outside a municipality cannot take place until required documentation has been obtained.[686] Documentation under the VSA includes various documents that the funeral director plays a role in coordinating; however, they also include a “Medical Certificate of Death”, which funeral services rely on others to prepare.[687] In Ontario, death certificates can only be issued by one of three professionals: a physician, nurse practitioner or the coroner.[688] Legislation was also recently introduced that, if passed, will clarify the operation of the VSA in circumstances in volving MAID-related deaths (see section 4.E).

To be clear, the VSA does not require funeral services to obtain a death certificate before transporting the deceased away from the home as long as they remain in the municipality. Therefore, there is no prohibition against quickly alleviating family and friends of the organizational tasks involved in obtaining a death certificate. Nonetheless, on the ground, funeral services commonly refuse to follow a request to do so. The LCO was informed that funeral services fear the potential liability that could be attached to transporting a deceased where the death actually was suspicious and they prefer the reassurance of a death certificate in advance. In addition, we were told that if funeral services take charge of the deceased, it can be challenging for them to assume the burden of arranging the death certificate.

At the same time, we were told that it can be incredibly difficult for family and friends to arrange for a physician or nurse practitioner to visit their home to issue a death certificate, as many professionals are not habituated to making home visits after hours or on weekends. In context of a MAID death, a physician may be present or not as people have the right to self-administer. Consequently, family and friends may end up contacting the police or coroner’s office in the event of either a natural or MAID death to reduce any delay associated with the burdensome process or arranging the attendance of a physician or nurse practitioner.

The legislative framework is, however, clear that a physician who has been attending to a person in the dying process or is aware of the illness must issue a death certificate. The relevant provision of the VSA regulations reads

[A physician] who has been in attendance during the last illness of a deceased person or who has sufficient knowledge of the last illness shall immediately after the death complete and sign a medical certification of death…and shall deliver the medical certificate of death to the funeral director.[689]

The CPSO policy on Planning for and Providing Quality End-of-Life Care emphasizes the obligatory nature of this role and advises physicians,

When a decision is made for a patient stay at home as long as possible or to die at home, it is recommended that the physicians plan in advance by designating the physician(s) or nurse practitioner(s) who will be available to attend to the deceased in order to complete and sign the medical certificate of death. It is also recommended that physicians inform caregivers of this plan.[690]

The VSA regulations contain similar provisions regarding nurse practitioners with primary responsibility for the person’s care. Nurses are also mandated to issue a death certificate and deliver it to the funeral director immediately, but in more limited circumstances.[691] As nurse practitioners will often be the provider with whom the person has more frequent contact, there are several educational tools designed for them from the RNAO, CNO and Government of Ontario.[692]

Despite the straightforward legal responsibilities in this area there remains a lack of education for individuals, families and friends (and therefore a lack of planning) as well as a lack of responsiveness from health care providers in visiting the deceased’s home to issue a death certificate in a timely manner.

4.      Strategies to better plan for and manage home deaths

We mentioned above that there are two stop-gap strategies currently being used in Ontario to enable a timely transfer of the deceased to a funeral home without having to engage the coroner’s mandate. The first avoids emergency services and the coroner’s office altogether: EDITH Protocols.

EDITH Protocols evolved as a grassroots response to a perceived gap. These are community-based tools, developed on the basis of shared principles and common needs, but regionalized in response to local needs and differing somewhat in their specific contents. EDITH Protocols are overwhelmingly favoured in the palliative care community across Ontario as the community-based tool to facilitate at home deaths. Moreover, the CPSO end-of-life policy refers to EDITH Protocols when advising physicians to take into account community strategies.[693]

It is important to understand that there is not a single EDITH Protocol. Cancer Care Ontario along with several CCACs, and LHINs disseminate an EDITH Protocol with instructions.[694] The specific contents of EDITH protocols vary.

EDITH Protocols provide funeral homes with the reassurance that they may transport the deceased after death upon a so-called “pronouncement” of death, before a death certificate is provided. They enable nurses, beyond nurse practitioners, to make a pronouncement and states that a physician will provide the funeral home with a death certificate within 24 hours. It thus gives funeral homes the security they seek and permits physicians added time to issue the death certificate. EDITH Protocols also contains information to confirm that CPR is not included in the treatment plan, identifies the primary health care provider and an alternate with their afterhours contact information, and contains information on alternative courses of action should problems arise.[695]

While the LCO has heard criticism of the specific content of particular EDITH protocols, ithe LCO has heard that EDITH protocols generally viewed as effective and easy to use. The major concern is inconsistent adoption across the province as an optional tool that some may not be aware of.

Ontario’s second stop-gap tool was created by the Office of the Chief Coroner as guidelines to simplify the process of obtaining a death certificate in cases where they have already been called in.[696] The guidelines specify a process for Office of the Chief Coroner employees to manage the situation in a timely manner and to avoid investigatory proceedings. The LCO was informed that the coroner’s guidelines have been updated over time and are operating very well in practice.

To the extent that the coroner’s mandate is to investigate unexpected and suspicious deaths, their involvement in facilitating home deaths is being provided out of the Chief Coroner’s generous vision of good public service. However, the coroner should not be required to be called-in to facilitate the transfer of a deceased to a funeral home during a very private and sensitive time.[697] The LCO heard that family and friends prefer the familiarity of physicians or nurses with whom they’ve been in contact rather than new and unfamiliar faces immediately after a loved one has died.

Because EDITH Protocols are working well, a significant number of stakeholders suggested the LCO recommend law reform measures to standardize this approach. Ensuring that health care providers broach conversations about planning for at home deaths would be an important part of this strategy.

The LCO also found that British Columbia has taken a novel approach to instituting a province-wide protocol, called the Joint Protocol for Expected/Planned Home Deaths in British Columbia.[698] The protocol allows family and friends to dispense with both a pronouncement of death and death certificate prior to funeral services transporting the deceased.

The British Columbia protocol may be used when the patient’s physician completes the form, sends it to the funeral home before the death, and agrees to fill out the death certificate within 48 hours after the death. In these situations, family and friends can themselves contact the funeral home directly to arrange for transportation without the involvement of a health care provider at all. Due to the advance documentation and information sharing, the funeral home should be prepared when the time comes.

Participants in the protocol include the provincial government, Office of the Chief Coroner, health regulatory colleges and the Funeral Services Association of British Columbia, among others.[699] It is also buttressed by specific provisions in provincial legislation, listing who has a right to contact funeral services after the death.[700] The legislation contains a hierarchical list of delegates beginning with the personal representative named in the deceased’s will, then the spouse and onto others from there.[701]

With this range of possible options available, the LCO would like to hear more during our consultations about what types of reform would be more appropriate for Ontario. EDITH Protocols are already being widely used across the province and have proven to be effective. On the other hand, the British Columbia model would limit the formal requirements to arrange for funeral services to transport the deceased without delay.   In particular, the LCO would like to hear about the potential benefits and drawbacks of a legislative or regulatory response, as opposed to, for example, policies or standardized protocols.

5.      Questions for discussion

16. Which options are preferred to better plan for and manage expected deaths at home? Would it be beneficial to have a province-wide strategy or formal regulation?

F.     Understanding the Experiences of Supporting Professionals

1.      Addressing the concerns of health and legal professionals

Improving the last stages of life will depend in large part on understanding and addressing the experiences of professionals who support persons who are dying and their family and friends. Professionals themselves require practical, ethical and moral supports to effectively provide for others. They are also individuals in their own right who are deserving of dignity and equality under the law.

The LCO’s project examines how work-related challenges can be minimized for two types of professionals that play an essential role in this domain: health care providers and legal professionals. The health care providers we address mainly offer services to patients, SDMs, family and friends, while legal professionals advise these persons as well as health care providers, facilities, government and organizations such as regulatory colleges.

In the following section, we review employment protections for health care providers who suffer mental and moral distress as a result of continuously supporting persons through death and dying. Then, we consider legal professionals’ challenges receiving guidance on practice and ethics in this growing legal field.

2.      Health care provider mental and moral distress

i. Explaining the scope of the LCO’s review on health care provider interests

The LCO received many comments from members of the public about several challenges that health care providers face in providing palliative care. The foremost challenges that were identified were the lack of moral supports for psychological distress, lack of clinical education (especially for primary care providers), and the desirability of expanding aspects of registered nurses’ scope of practice to increase accessibly to a range of services (e.g., medications, death certifications, treatments).

Of these issues, the LCO’s project will only address health care providers’ employment-related psychological supports for a number of reasons. First, when we asked stakeholders about limitations on the LCO’s project, we were advised not to address matters of clinical practice, and we agree. The LCO views the analysis of health care providers’ scope of practice as falling outside our mandate as a law reform agency. Second, the LCO is concerned that making recommendations about strengthening education for health care providers relating to palliative care would duplicate the ongoing efforts of the OPCN and MOHLTC.

Moreover, any review of education for health care providers relating to capacity, consent and advance care planning would overlap with the LCO’s own project on Legal Capacity, Decision-Making and Guardianship. A final report with detailed recommendations was released in early 2017, and is available on the LCO’s website.

We also provided you with an overview of key findings and recommendations relating to education, information and quality assurance in the capacity and decision-making project in section D.3 of this chapter.

  • To read more about the LCO’s project scope, please see ch. 1.C, “The project scope incorporates ongoing developments,” and ch. 1.D.2, “Project development, research and consultations.”

ii. Work-related mental and moral distress

 The serious mental and moral stress that health care providers experience when working continuously with persons nearing death was a recurring theme during the LCO’s consultations. Stakeholders requested that the LCO consider opportunities under the law to support health care providers across all care settings with psychological wellness.

The existing literature confirms that persons working as health care providers experience a higher incidence of stress and “burnout” than employees in other sectors.[702] Burnout out is a “persistent, negative work-related state of mind” characterized by feelings of exhaustion and distress, and the “development of dysfunctional attitudes and behaviours”.[703] Aside from stress and burnout, the LCO heard that health care providers can develop mental health issues relating to trauma and depression if they do not receive adequate care.

Health care providers naturally have psychological responses to their professional environments, which include emotional responses to contact with patients who are suffering and dying.[704] Palliative care providers, in particular, have a very high burnout rate that is especially high among nurses, social workers and chaplains.[705] Specific stressors for palliative care providers include

…absorption of negative emotional responses, breaking bad news, challenges to personal beliefs, coping with inability to cure, immersion in emotional clashes, poorly defined roles, recurrent exposure to death, working in an area of uncertainty, patient suffering, and secondary trauma.[706]

Palliative care staff has been found to be “at risk of poor psychological outcomes as a result of insufficient ability to cope with these demands”.[707]

Nurses and PSWs in long-term care homes also face stressors connected to caring for persons with declining health and dementia, and to their regular exposure to death.[708] One study in Ontario by the Quality Palliative Care in Long-Term Care Alliance found that staff often goes through a process of grief and bereavement after a resident passes away. About 80 to 90% of services in long-term care are provided by PSWs who offer very personal forms of assistance, such as bathing, feeding, dressing and caring for residents’ psychosocial needs.[709] Residents and staff may develop close bonds through intimate contact, and staff may experience intense grief upon a resident’s death.[710]

However, this same study found there is a lack of systemic education and supports for providers’ mental wellness:

The LTC setting provides little formal support for staff in managing their grief and loss when a resident dies… staff does not systematically receive training on grief and bereavement, despite the regular occurrence of death. As more residents live and die in LTC homes, it is important for staff to have access to support that enhances their ability to continue providing compassionate and quality care.[711]

These findings on long-term care homes mirror what the LCO heard about the inadequacy of wellness supports for health care providers in other care settings as well.

Unfortunately, supports for providers to alleviate stressors and address grief and bereavement are not well researched or understood.[712] Therefore, implicit in our discussion about legal frameworks for employment protections is a recognition that more reliable information is necessary to understand what successful interventions might look like.

iii. Legal framework for employment health and safety protections

Some providers will fall within the ambit of Ontario’s Occupational Health and Safety Act. The Occupational Health and Safety Act protects employees from health and safety “hazards” in the workplace that could potentially result in harm.[713] The Act requires employers to internalize workplace responsibilities by imposing various legal duties to minimize hazards and respond to harms. In most situations, employers shoulder the greatest burden to protect the health and safety of their employees.[714]

Workplace protections are fairly limited to particular types of hazards in the workplace, such as unsafe physical environments and harassment.[715] However, in addition to specific protections, the Occupational Health and Safety Act establishes a general duty to take precautionary measures and provide resources to protect workers:

Duties of employers

                 s.25(2) …an employer shall,

  • provide information, instruction and supervision to a worker to protect the health or safety of the worker

(h)  take every precaution reasonable in the circumstances for the protection of a worker.[716]

There are no provisions in the Act that expressly deal with the mental health of workers. Moreover, the LCO received information indicating that workplace environments that may negatively impact employees’ mental health are not considered to be “hazards” that could give rise to any legal duties under the statute.

In 2013, the Standards Council of Canada, a federal Crown corporation, published voluntary standards on protecting employees in the workplace from mental health issues, called Psychological Health and Safety in the Workplace.[717] However, the Occupational Health and Safety Branch of the Ministry of Labour (MOL) has prepared guidance for inspectors stating that this standard should not be considered a reasonable precaution, which employers are required to implement in order to comply with the general duty to protect workers.

Providing for the mental health of workers is, nevertheless, a developing area. In 2014, the MOL was mandated to support mental health in the workplace by engaging with companies that have introduced strong mental health programs and working with employers to expand on employer-provided services.[718] The following year, MOL hosted a summit on work-related traumatic stress.[719] These initiatives culminated in new legislation in 2016, which amended the Workplace Safety and Insurance Act, 1997 to better account for the prevalence of post-traumatic stress disorder (PTSD) in first responders, including paramedics and emergency medical attendants.[720]

Under the new legislation, the Workplace Safety and Insurance Board (WSIB) must presume that PTSD is work-related, unless the contrary is proven, which lightens the employee’s burden in claiming benefits.[721] The Ministry of Labour is now also authorized to direct employers to report on their plans to prevent employment–related PTSD.[722]

Needless to say, these gains are extraordinarily positive. Still, amendments to the Workplace Safety and Insurance Act, 1997 are limited in terms of the types of providers who might be touched by stressors considered in this project. Many health care providers are not covered who might experience workplace distress, such as nurses, social workers and PSWs.[723] The legislation is also aimed at employees whose injury rises to the level of a diagnosed psychiatric disorder (i.e., PTSD).[724]

Therefore, beyond these recent gains, the LCO’s project considers whether health care providers who habitually support patients who are dying could benefit from a similar expansion of occupational health and safety legislation to address the emotional repercussions of their work situation, or if there are other legislative or policy reforms which would be effective and appropriate.

iv. Competing rights and the health care context

 LCO’s background consultations heard from health professionals who identified ways in which the challenges of providing care during the last stages of life may be compounded by competing rights or duties. The challenges associated with these competing rights are particularly complex because of the range of settings in which end of life care takes place, including patient’s homes.

Given the incredible diversity of Ontario society, it is not surprising that situations arise where there are conflicts between the rights of individuals, and it is likely that the incidence of these types of conflicts will only increase.

These may be conflicts between competing human rights. The right to be free from discrimination on the basis of gender or sexual orientation may come into conflict with rights related to creed, for example where a patient makes a request based on his or her creed, for care to be provided by a professional of a particular sex or sexual orientation.

There may be conflicts between different types of rights and responsibilities. For example, a patient may, for reasons related to creed of culture, request that a service provider remove footwear in the home or certain areas of the home, but this may conflict with health and safety requirements related to foot protection.

There may be circumstances where a patient unintentially engages in offensive behaviours that violate the rights of health care providers – for example, because of dementia.

Health care professionals provided us with many examples of these types of conflicts.

These challenges are not unique to the health care setting, and within the health care setting, are not particular to end of life care. However, the gravity and emotional weight of end of life care may bring an increased pressure and difficulty to managing and resolving these conflicts at the end of life.

In an effort to assist Ontarians with addressing these challenges, the Ontario Human Rights Commision released a Policy on Competing Rights in 2012. The Policy is intended as a tool for individuals and organizations, and sets out a process for analyzing and reconciling competing rights.[725]

The OHRC’s Policy points out the no rights are absolute, and no right is more important than any other right. All rights must be given consideration. Rights have limits in circumstances where they substantially interfere with the rights of others.[726]

The Policy suggests processes for resolving competing rights claims that involve human rights issues, including informal dispute resolution processes and more formal ADR approaches. In some cases, disputes may find their way to the Human Rights Tribunal of Ontario.

Competing rights raise issues far beyond the scope of this project, and it is not the intent of the LCO to broadly address these challenges. However, these challenges are an important consideration in understanding the needs for supports among those working to provide care at the end of life. Strategies for improving supports should take these challenges into account.

 v. Opportunities to improve mental health supports in the workplace

We mentioned above that there is inadequate information on successful interventions to prevent and respond to mental distress for health care providers providing services to persons in the last stages of life. Yet some suggestions in the literature include strategies to

  • integrate education and awareness about mental health into the workplace, including strategies to manage grief and loss
  • clearly delegate responsibility to plan and implement mental health protection measures within the organization
  • educate employees in leadership roles to promote and address the psychological health of employees (e.g., supervisors, managers, unions)
  • reduce financial barriers to care through health care benefit coverage
  • encourage peer support and conversations about their experiences.[727]

The LCO would like to know whether such strategies could be incorporated into employment health and safety legislation (i.e., Occupational Health and Safety Act), into sectoral frameworks, such as the Long-Term Care Homes Act, 2007, or through the LHIN’s mandate under the Local Health System Integration Act, 2006. Improved supports for palliative care providers could also possibly be included in Ontario’s developing provincial palliative care strategy.

The LCO believes that further investigation of opportunities to improve psychological services for health care providers could build on advancements for first responders at risk of PTSD as well as systemic programs that counter harms which are not always physical, but have gained acceptance over time, such as workplace harassment.[728]

3.      Ethical and practice difficulties for legal professionals

  1. The role of legal professionals nearing the end of life

When individuals become ill or transition into their older years, they often go to lawyers to assist with drafting a will or POA, or to seek out advice about their rights. Legal professionals are usually advocates: they represent clients in disputes and offer supports to help them navigate through the complexity of Ontario’s health, social and legal systems. In addition to individuals, their clients may be counsel for government, regulatory colleges, health care providers and facilities. Legal professionals may also be educators and adjudicators in administrative tribunals or the courts.

Legal professionals may face a variety of challenges when it comes to advising clients who are dying and those around them. Similar to our approach to health care providers, this project does not consider challenges with education for legal professionals on decision-making issues due to our work on that subject in the Legal Capacity, Decision-Making and Guardianship project (see section 3.D of this chapter). However, legal professionals who work with those who are dying have particular experiences that should be acknowledged.

In order to gain an appreciation of their interests, the LCO held an event to gather evidence from legal professionals with expertise in this practice area, called the “Roundtable on Legal Ethics and Practice for the Last Stages of Life”. The roundtable is introduced briefly in section 1.D.2 of this discussion paper and more thoroughly in Appendix E. We primarily rely on information received at the roundtable in this section.

  1. Understanding the experiences of legal professionals working with end of life issues

In their practice of law, legal professionals may face challenges or require support in understanding their responsibilities concerning the practice of law (e.g., advising clients, resolving disputes) as well as ethical duties that arise from practice. The Law Society of Upper Canada (LSUC) governs Ontario’s lawyers and paralegals in accordance with the Law Society Act.[729]

Legal professionals must conduct themselves in a manner that is consistent with the LSUC’s Rules of Professional Conduct and By-Laws (Rules).[730] Like health care providers, other sources of guidance for legal professionals might include rules established under the common law or knowledge gained from professional development opportunities and community networks.

Since legal professionals deal with the law, by definition, ambiguities in Ontario’s legal system pose significant problems for them. Without clarity in law, it can be stressful to advise clients with confidence and certainty about their options. Lawyers may also inadvertently perpetuate misinformation in the community as a result. As one lawyer told us, “lawyers don’t know what they don’t know”.[731] During the Roundtable, some lawyers expressed their view that greater clarity would be beneficial with respect to the withdrawal and withholding of life-sustaining practices, and use of DNR orders (see section B, above).

Apart from complications with the law, legal professionals at the Roundtable reported a number of practice and ethical challenges. Examples of core issues they struggle with involve the following:

  1. Duties towards persons who may be indirectly affected by immediate clients: Nearing the end of life, planning and decision-making can involve patients, family members, SDMs, health care providers and facility operators. When a lawyer represents anyone of these individuals there could be ramifications for the other parties. Lawyers owe a duty of loyalty to their clients and the Rules of Professional Conduct require them to advocate for the client, but they do not speak to broader obligations to others (except when a child’s health, welfare or security is affected).[732] Some lawyers questioned whether, for example, a lawyer representing a health care provider treating a patient should have obligations toward the patient, given that the client itself (the health care provider) owes duties to the patient? What might this look like if a lawyer is representing an SDM, who is not acting in the patient’s best interests? The LCO heard from attendees at the roundtable that the reach of a lawyer’s responsibilities might be revised to include other vulnerable persons when essential health care issues are at stake.
  1. Determining the lawyer’s role in assessing capacity: In this discussion paper, we have concentrated on capacity to grant a POA for personal care and to make treatment decisions, but there are other domains of decisional capacity as well. Capacity is decision-specific. For example, lawyers may need to determine whether a client has capacity instruct counsel. Legal professionals at the Roundtable expressed a need for greater practical guidance on the standard for capacity to instruct counsel and how to conduct such an assessment. Greater guidance was also desired on the practical and ethical issues associated with representing clients who may be legally incapable with respect to treatment. The Rules require lawyers to “as far as reasonably possible, maintain a normal lawyer and client relationship” when a client has diminished capacity.[733] However, the LSUC’s commentary on the Rule is general and does not discuss the interaction of different capacity issues. Related issues were raised in the LCO’s project on Legal Capacity, Decision-making and Guardianship, and were the subject of proposals for reform in recommendations 33 and 34.
  1. Knowing how to manage dynamic family relationships: Lawyers are regularly approached to represent a patient by a family together or, even, separately by a spouse, parent, sibling or child. Family relationships nearing the end of life can be marked by disputes and heightened emotion and they may give rise to possible conflicts of interest for lawyers who become involved in family dynamics. Family members may contact lawyers seeking private health or legal information. Furthermore, capable patients may defer to their family members to make treatment decisions for them. The Rules of Professional Conduct advise lawyers on managing conflicts of interest and confidentiality.[734] However, legal professionals expressed a desire for more practical and specific guidance on these issues.
  1. Representing children who are nearing the end of life: Representing children can be a challenge because of family and health care team dynamics. For example, the LCO was told that children’s voices are not always heard within the context of prevailing models for decision-making that are used when children are ill. Health care providers often adopt a team approach involving the providers, parents and child together in decision-making; however, the LCO heard that children’s voices can sometimes be subsumed or influenced by that of their parents in the process. Health care providers may not assess a child’s capacity for decision-making and children may not be informed about their rights – adults speak about them, rather than to them. Participants in the roundtable mentioned that children have two options for legal representation: advocates (when the lawyer represents the child) and child protection. Questions about whether to represent a child or involve child protection or other independent counsel are ones that lawyers find hard to answer. Although the Rules of Professional Conduct require lawyers to advise clients to take the child’s best interests into account in adversarial proceedings, they do not address how lawyers proceed when they are representing children.[735]
  1. Disclosing information regarding medical assistance in dying: Overall, legal professionals did not see many practice and ethical dilemmas for lawyers resulting from the availability of medical assistance in dying since it will be delivered by health care providers. However, they did observe two topics for review: the creation of rules on lawyers’ conscientious objections and referrals, and the revision of existing Rules on disclosure of confidential information. The Rules of Professional Conduct currently permit lawyers to disclose information if the lawyer believes there is an imminent risk of the client’s death.[736] Legal professionals expressed concern that this Rule could lead to the disclosure of sensitive information about medical assistance in dying to family and friends, who the client would rather not have know.
  1. Recognizing where the lawyer’s competence ends and facilitating referrals: Legal professionals may have limited expertise when it comes to clinical practices, religious beliefs, alternative courses of action or other knowledge and skills that feature in health care matters. Under the Rules of Professional Conduct, when lawyers lack competence they should decline to act, obtain the client’s consent to consult or collaborate with a lawyer who is competent, or seek out advice from experts in non-legal fields.[737] Yet the LCO was informed that legal professionals may not be compensated for assuming such a “liaison” role or for making referrals to non-legal experts, such as religious leaders or social workers. Participants were hesitant to say that lawyers ought to take on this responsibility, rather some suggested that strengthened independent advocacy, for instance through an end of life care coordinator, would be preferable.

 

  1. Promoting guidance for legal professionals

Although opinions differ on the exact challenges that legal professionals face and what should be done to remedy them, there appeared to be consensus at the LCO’s roundtable that legal professionals desire guidance on the law and how to effectively and appropriately carry out their duties, specifically pertaining to the last stages of life. Participants remarked that this is a specialized field of law demanding a level of competence that many lawyers do not presently have. They said that novel strategies are in order and gave various suggestions.  

For instance, strategies might consist of clarifying the law where it is unsettled – which is one of the LCO’s objectives in this project. Enhanced, independent community advocacy was also proposed as an option to assist clients with referrals to non-legal experts and social supports outside the lawyer’s competence.

The majority of proposals for reform concerned changes to the Law Society of Upper Canada Rules of Professional Conduct that could accurately reflect Ontario’s expanding client base in palliative, long-term, retirement and home care. Such changes could take the form of amendments to the Rules, mentioned above, additional commentary on those Rules, or supplementary education and guidance tools.

The LCO would like to hear from members of the public about other options to improve guidance for lawyers supporting individuals nearing the end of life.

4.      Questions for discussion

17. How can strategies for addressing the needs of health care providers assist with mental and moral stress? How can health care practitioners be better prepared to manage disputes?

18. Do legal professionals require specific education and guidance on matters relating to the last stages of life, and what form might this best take?

G.    Accommodations and Supports for Faith and Cultural Communities

1.      Introduction

Palliative care’s holistic philosophy was originally conceived by Cicely Saunders, a deeply religious person who sought to integrate pain management with community environments and spiritual engagement.[738] As a result, “Religion has had a profound role in shaping the development of the international hospice movement”, as has respect for community membership.[739]

Saunders’ use of the term “spiritual” was connected to her own religious traditions.[740] It preceded contemporary usage of the same term to mean a value system apart from, or at least not necessarily, connected to religion.[741] In this section, we explore the relationship between concepts including “religion”, “faith”, “spirituality”, and “culture” to understand how they overlap and differ before beginning our review.

Following our discussion of terminology, we consider the significance of faith and culture to quality care in the last stages of life. We then review Ontario’s existing legal frameworks for faith and cultural rights. Finally, we analyze challenges and opportunities for reform.

Much of this section relies on a report the LCO commissioned from external experts. The paper, Integrating Religious and Cultural Supports into Quality Care in the Last Stages of Life in Ontario, presents new qualitative information that the authors gathered in consultation with health care providers, faith leaders and representatives of cultural communities in Ontario.[742]

  • To read the full research paper commissioned by the LCO on faith and cultural issues, please visit our website at lco-cdo.org.

2.      Significance of faith and culture nearing the end of life

 i. Defining faith and culture

 The LCO has chosen to use the terms “faith” and “culture” in our report for their broad scope and regular usage among stakeholders whom we consulted. We intended these terms to be inclusive of other words relevant to the issues the project reviews such as “religion”, “ethnicity”, “ancestry” and “language”. We also acknowledge they might overlap with additional social concepts such as “race”.

The Ontario Human Rights Commission (OHRC) recognizes that individuals see themselves and others as a “unique combination of identities”.[743] Within the human rights system, there are distinctive attributes associated with each ground for equality (e.g., sex, age, race), but people also have intersecting identities that may not be captured by one ground. If individuals face discrimination, ideas about identity – such as faith and culture – are not easily separable.

In considering issues related to faith, it is useful to reference the OHRC’s definition of “creed”, which includes religious traditions and other “belief systems that, like religion, substantively influence a person’s identity, worldview and way of life”.[744] The OHRC explains that a creed

  • is sincerely, freely and deeply held
  • is integrally linked to a person’s identity, self-definition and fulfilment
  • is a particular and comprehensive, overarching system of belief that governs one’s conduct and practices
  • addresses ultimate questions of human existence, including ideas about life, purpose, death, and the existence or non-existence of a Creator and/or a higher or different order of existence
  • has some “nexus” or connection to an organization or community that professes a shared system of belief.[745]

Approaches to the concept of “creed” remain controversial. The LCO is sensitive to apprehensions about the OHRC’s definition of “creed” as being overly broad because its capacious scope includes social movements that are not at all akin to religion (for instance, worshipping extraterrestrials).[746] From a practical perspective, an overly broad definition could confuse or dilute attempts to delineate religious accommodations. During the LCO’s preliminary consultations, we heard considerable confusion about how to appropriately apply this definition in this context.

At the same time, however, the LCO values the OHRC’s definition for its potential to encompass variations within traditions and between individual and group beliefs. The OHRC’s definition also validates beliefs and practices that are intimately tied to history, tradition, ethnicity and culture, such as Indigenous spirituality.

“Cultural competence” is an established term in the health care context. Culture is not an enumerated ground under the Human Rights Code or the Charter. However, there are linkages to grounds enumerated under the Code such as ancestry, place of origin, ethnic origin, race and creed. The possible overlap between these concepts is evident in the following definition of culture:

A way of life common to a group of people, including a collection of beliefs and attitudes, shared understandings, and patterns of behavior that allow those people to live together in relative harmony, but that set them apart from other peoples. These practices also produce behavior that falls within a range of variation the members consider proper and acceptable.[747]

In this discussion paper, we write about faith and culture together, and distinguish them where appropriate. For instance, a newcomer to Canada may belong to a cultural community but hold no faith beliefs. Later in this section, we explain that the Charter protects freedom of religion under a separate provision from equality.[748] Equality rights extend to religion, but they also protect individuals and groups that may not be religious (or may not have been discriminated against as a result of religion). The legal tests to assert a rights claim under these Charter provisions differs.

A Note on “Spirituality”

Spirituality may refer to an individual’s religious experience. However, in contemporary usage, the word often does not refer to experiences with a single formal religious tradition. People who are atheist or agnostic may consider themselves spiritual as well.[i][749]

In present-day palliative care, psychosocial “spiritual” supports are not usually associated with religion. They may be provided by health care providers, chaplains and social workers who lead conversations on existential issues about meaning and loss.[ii][750] Understood in this way, the application of legal frameworks to spiritual rights and accommodations is ambiguous.

ii. How faith and cultural affect access to quality care

 Spiritual care and faith based care is somebody’s way of life. It is how they know themselves and how they known how to interact with others… In the medical world we say we are providing total care, you know, we are providing holistic care. It is not holistic, if spiritual and faith based care [are not there] and particularly… when you are not looking at the culture that… the client is telling us he is a part of or feels strongly [about].[751]

  • Registered nurse

 Faith and culture are integral to attitudes about care nearing the end of life and perceptions of quality in health care services. While Ontario strives to improve equitable and high quality palliative care, it should consider strengthening services that reflect deeply held patient values and wishes for community engagement. As the Fraser Report explains, Ontarians have pronounced views “about the importance of ensuring that all patients have access to culturally appropriate and safe palliative and end-of-life care”.[752]

Perhaps it is because faith and culture have profound meaning at the end of life that disagreements – even misunderstandings – about suitable care may lead to conflict. Nearly each person whom the LCO has spoken to referenced faith and culture as factors leading to disputes between patients, SDMs and health care providers. Much of the case law that affirms decision-making rights in this context also results from disputes between health care providers and faith adherents.[753] Thus, in addition to promoting experiences of good care, avoiding disputes is a material rationale for integrating faith and culture into the health system.

These disputes may arise in a wide variety of ways. Faith may shape a decision to request or reject a particular treatment contrary to the recommendation of the health provider. In cases where the patient has become legally incapable, disputes have arisen as to how the patient’s faith should affect the interpretation of their advance care planning documents. These disputes may be particularly challenging where individual beliefs do not cleanly conform with institutional orthodoxy. In some situations, a patient’s faith may lead to a request to have services provided by an individual of a particular gender or sexual orientation. Or, health providers may have conscientious objections to providing a requested treatment.

Some of these disputes raise concerns about competing rights. For example, a patient’s faith-based request to receive treatment or services only from professionals of a particular gender, or not to receive services from persons who are LGBTQ, may have a discriminatory effect on the service provider. The Ontario Human Rights Commission has explored these issues in its Policy on Competing Rights.[754] These issues are discussed at more length in Chapter 6. F.

The LCO commissioned paper explains these two interrelated ways in which faith and culture affect access to quality care:

A recurring theme of our research [is] an acceptance and acknowledgement of the importance of faith and cultural beliefs as vital components in shaping how Ontarians choose and direct their care at the end of life. However, these beliefs also act as unexpected barriers to health care providers providing the best services for Ontarians as they approach death.[755]

 Within the confines of this discussion paper, the LCO cannot describe examples of beliefs and practices among Ontario’s diverse communities without being reductive. We recommend sources that readers can access for that information at the end of this part.

Below, we simply highlight general ways in which faith and culture influence care for the dying. Our purpose is to identify moments when heightened attention to faith and culture is due:

  1. Treatment decisions: Patients and SDMs may take faith and cultural beliefs into account when making decisions about life-sustaining treatments. Some belief systems are uncomfortable with mainstream health services; others maintain that life support should be provided indefinitely until a person dies. Between the two, there is a spectrum of beliefs about withholding and withdrawing life support, medical assistance in dying and the receipt of non-traditional treatment.[756]
  2. Practices during illness: Faith and cultural communities may exercise meaningful practices during illness, such as prayer and ceremonies. Practices are expressive and may require adaptive physical environments that can accommodate singing and music, smoke, prostration and visitations from community members that may exceed standardized allowances.[757] Practices may occur at key junctures in the illness trajectory that could require adjustments to procedural routine.
  3. Significant community figures: Community figures may embody a sense of history and collective experience. For instance, elderly persons who survived past atrocities emanating from hate and discrimination can hold special significance for community members.[758] Family and community members might expect these figures to receive particularly respectful treatment.
  4. Care for the deceased: Caring for the deceased may involve a variety of practices, ranging from prayer to tending to the body and burial ceremonies. There may be a critical order for the succession of practices. Community members may also request to be involved in physical after-death care, and to exclude health care providers. Keeping the deceased’s body “whole” is a central belief for many faiths and cultures, which organ donation or autopsies might offend.[759]

The above description of moments when faith and culture are engaged during the dying process is admittedly limited. Other recurring themes that the LCO heard about include food preferences, language needs and continued contact with faith and cultural peers, especially in long-term care homes.

For detailed examples of common beliefs and practices among Ontario’s diverse communities, readers might consider the following sources:

Summaries of End of Life Beliefs and Practices

Ruby Latif, Omar Ha-Redeye & Kashif Pirzada, Integrating Religious and Cultural Supports into Quality Care in the Last Stages of Life in Ontario (2016)[i][760]
Harold Coward & Kelli Stajduhar, eds, Religious Understandings of a Good Death in Hospice Palliative Care (2012)[ii][761]
Paul Bramadat, Harold Coward & Kelli Stajduhar, eds, Spirituality in Hospice Palliative Care (2013)[iii][762]
Canadian Multifaith Federation, Multifaith Information Manual (2011)[iv][763] 

iii. First Nations, Inuit and Métis cultural safety

Legal responsibility for health care in First Nations, Inuit and Métis communities in Ontario is complex because it is shared between Indigenous, federal and provincial governments. In chapter 5 of this discussion paper, we outlined key barriers to care for Indigenous peoples living in Ontario. In this section, we consider the necessity of integrating Indigenous beliefs and practices into care nearing the end of life as a matter of “cultural safety”.

The term cultural safety was coined in New Zealand with respect to Maori peoples’ health care. However, it has developed into a way of speaking about culturally appropriate health care for Indigenous peoples around the world, including in Canada.[764]

There is no single definition of cultural safety. Generally, it aims to convey the interconnectedness of Indigenous health with the continuing repercussions of colonization, cultural and social assimilation and persisting systemic discrimination, which have led to trauma within communities and a loss of culture.[765] Health care that does not respond to these factors has been considered to generate “risks” to security.[766]

Cultural safety is sometimes placed on a continuum alongside the term “cultural competence”; however, some proponents consider it to be a “paradigm shift” – a more dramatic change in approach.[767] Whereas cultural competence may be characterized as health care provider education about and sensitivity to various cultures (and, therefore, a service provision model), cultural safety is envisioned as an outcome from the patient’s viewpoint. Thus, cultural safety involves awareness about power imbalances between health care providers and Indigenous patients, and a fundamental power shift toward the patient’s experience of quality care.[768]

The Assembly of First Nations describes the shift in location of power and control that cultural safety entails as follows:

The person who receives the services defines whether it was culturally safe. This shifts the power from the provider to the person in need of the service. This is an intentional method to also understand the power imbalance that is inherent in health service delivery.[769]

The National Collaborating Centre for Aboriginal Health has accumulated definitions of cultural safety from organizations that endorse this language, including the National Aboriginal Health Organization, Indigenous Physicians Association of Canada and Canadian Indigenous Nurses Association of Canada. Key aspects of their and other descriptions of cultural safety include

  • Analyzing colonial relationships, discrimination and power imbalances
  • Having service providers reflect on their own culture and its impacts on their providing care
  • Understanding the pervasiveness of health problems within Indigenous communities
  • Respecting the patient’s definition of what “safe” service means.[770]

In practice, cultural safety calls upon policymakers, service providers and communities to reformulate approaches to health care. It requires the incorporation of Indigenous understandings of death and dying, healing practices, traditional foods, spirituality, and language and cultural translation, and true engagement with community members in service planning and delivery.

Specific barriers to these goals that the LCO has heard about include the lack of long-term and palliative care on reserves and in rural and remote communities; the insufficiency of paid translators; and the need for spaces that accommodate ceremonies and large groups of people, including immediate family, elders and extended community members. Although not all First Nations, Inuit and Métis individuals will want to access traditional healing, integrating traditional medicine into palliative care approaches has also been said to be important for many diverse groups.[771]

In a paper describing the development of an innovative community-based palliative care program in Six Nations of the Grand River Territory, the authors identified several policy challenges for First Nations communities seeking to develop palliative care, including accessing human resources and equipment, jurisdictional issues as barriers to funding, the need for education and training to develop qualified First Nations healthcare professionals from the community, and the lack of dedicated funding allotted for end of life care in First Nation communities.[772]

As a first step, in terms of the LCO’s project, we could consider making recommendations that build on the many best practices that community members brought to our attention. In addition to the program at Six Nations of the Grand River Territory referenced above, examples of best practices in Ontario include the Sioux Lookout Meno Ya Win Health Centre, which primarily serves Anishinabe communities in Northern Ontario, and the Lakehead University Improving End-of-Life Care in First Nations Communities project, which is a “bottom-up” model for First Nations capacity-building at the local level.[773] Each of these initiatives is based on principles of community mobilization, self-determination and cultural safety.

3.      Legal framework for faith and cultural rights

i. Freedom of religion, provincial human rights and Indigenous rights

Previous chapters in this paper summarize equality rights under s.15 of the Charter and the Human Rights Code as well as other rights and principles relevant to ensuring equality and substantive justice in health care services. In particular, chapter 5 addressed legal frameworks germane to communities with unmet needs. Faith and cultural communities are among those with unmet needs and the legal frameworks presented earlier in this paper apply to them. (See also, chapter 3.C, “Legal Rights and Principles Affecting Health Care”.)

Here, we supplement prior chapters with a brief account of further rights and principles that could apply to faith and cultural communities: freedom of religion under s.2(a) of the Charter, the OHRC policy on creed, and Indigenous rights.

On the whole, these laws do not paint a cogent picture of what rights faith and cultural communities are entitled to on the ground when it comes to requesting positive, culturally competent and safe health care services nearing the end of life. This is due, in part, to tensions between laws. Faith and cultural rights are complicated by their connection with capacity and decision-making, and child protection laws. In some respects, these other laws may already incorporate faith and cultural considerations, albeit as factors to be balanced against other rights and principles (especially, security and wellbeing).

The OHRC policy on creed provides the most pragmatic lessons for the LCO’s project due to its focus on positive accommodations across both government and private sectors. The OHRC policy and other sources of rights and principles are summarized below:

  1. Freedom of religion (Charter, s.2(a)): Freedom of religion is protected as a fundamental right under the Constitution.[774] It guarantees individuals and groups freedom from government activity that interferes with their sincerely held religious beliefs and related practices.[775] The relationship between freedom of religion and health care services has not been clearly delineated. The Supreme Court has heard just a few claims where the Charter was invoked directly or indirectly to assert a patient or SDM’s right to refuse consent to treatment on religious grounds. These cases concern both the right to refuse the provision and withdrawal of treatment.[776] Most recently, religious beliefs have been generally characterized as implicit in “best interests” tests that factor in values and beliefs.[777] Where matters of child protection are involved, the Court has repeatedly split on whether prohibiting a parent to refuse lifesaving treatment on a child’s behalf violates s.2(a) of the Charter.[778] However, even Justices who found there to be a rights violation have concluded it was justifiable as a reasonable limit.[779]
  1. OHRC policy on creed: The OHRC describes the Code protections for creed as going beyond freedom of religion under the Charter, which it says “is primarily concerned with preserving individual liberty”.[780] The Code promotes equality and non-discrimination in requiring that individuals and groups “may equally access, benefit from, and are equally treated”.[781] Under the Code, health care providers and facilities have a duty to accommodate sincerely held beliefs and practices to the point of undue hardship.[782]

Accommodations may require “inclusive design” to remove barriers to full access and participation that flow from standardized policies. They must also be individualized. While persons seeking accommodations must help to secure them, the provider is responsible for putting solutions in place with the person’s cooperation.[783]

Based on the OHRC policy, health facilities and providers should assess whether staff have necessary cultural competency. The policy states that cultural competency is “key to recognizing and meeting human rights-related needs of different groups and communities” and gives the example of a hospital that could meet its duties by training staff and maintaining a “roster of counsellors and chaplains on hand to support end-of-life care”.[784]

  1. Indigenous rights: Existing aboriginal and treaty rights are recognized and affirmed under s.35 of the Constitution Act, 1982. The definition of “aboriginal peoples” under the Constitution includes First Nations, Inuit and Métis peoples. In chapter 5.D, we explained how First Nations, Inuit and Métis health care is regulated in Ontario. Whether culturally safe health care rises to the level of a constitutional right engages another line of inquiry. One Ontario case considered whether child protection laws violate Indigenous rights, when a parent refused consent to treatment on behalf of her daughter to pursue traditional medicine.[785] That case is controversial and the results, which were subsequently amended, do not provide clarity on the balance of rights in such cases.

Aside from s.35, First Nations assert that the government has a fiduciary duty to provide quality health services to Indigenous peoples.os[786] A recent Supreme Court case affirmed that the Ontario government is subject to fiduciary duties in dealing with Indigenous interests in some circumstances; although, it does not speak to fiduciary duties to provide culturally safe health care.[787] It also should be recalled that a new landscape of partnership is forming between Indigenous, federal and provincial governments. The federal and provincial governments have made new funding commitments to Indigenous health to be managed in partnership with Indigenous governments.[788]

The OHRC policy on creed devotes a full chapter to Indigenous spirituality. The policy recognizes a flexible and robust definition of Indigenous spirituality and requires accommodation for Indigenous peoples’ beliefs and practices, including ceremonies and customs. It specifically addresses the need to accommodate smudging in hospitals, for health care providers to develop cultural competency skills, and for extended time for bereavement leave. It also recommends service providers create a complete strategy to prevent and address issues affecting Indigenous spirituality.[789]

Finally, the LCO supports non-binding sources of law, such as the TRC’s Calls to Action, which establish compelling objectives for culturally safe health care. In 2016, Canada also ratified the United Nations Declaration on the Rights of Indigenous Peoples – an international treaty with standards for the attainment of health, involvement in determining health programs, right to traditional medicines and health practices, and the protection of culture.[790]

Again, it is possible that legal frameworks do not provide the practical guidance required to integrate positive, faith and cultural supports into health care services in the last stages of life. The OHRC policy on creed has the most robust formulation of what equality means in these situations, and it recommends that employers, facilities and health care providers implement concrete strategies to prevent and address diverse faith-related needs.

One question for the LCO’s project is whether the OHRC policy goes far enough in relying on “accommodations” to guarantee supports for what could simply be good, quality care. In this project, the LCO uses the terminology of “accommodations and supports” to acknowledge that although some services may not be protected rights, they may be part of a person, family and community centered approach to quality care that can be integrated into sectoral laws, discussed below.

ii. Sectoral laws: hospital, long-term, home and community care

Because Ontario’s health care system is fragmented across sectors, separate laws may contain various provisions relating to faith and cultural preferences.

For instance, the Long-Term Care Homes Act, 2007 and Home Care and Community Services Act, 1994 establish rights to receive services that respond to preferences based on ethnic, spiritual, religious, linguistic, familial and cultural factors.[791] In developing a plan of care or services, providers must ensure that these factors are incorporated or considered.[792] Moreover, in assisting a resident with placement in a long-term care home, coordinators must consider faith and cultural preferences.[793]

There are long-term care homes in Ontario for First Nations peoples on reserve and for cultural and linguistic communities across the province. Such institutions are protected by provisions of the Human Rights Code for special interest institutions.[794] However, the LCO has been told there are too few. A 2016 study found that persons who apply for culturally specific long-term care homes wait longer than other applicants. It explains, “those from linguistic and ethnic minority communities may have to wait for years to enter their preferred homes that serve traditional cuisines and activities and provide care and nursing services by staff who speaks their mother tongues”.[795] The LCO also spoke to service providers who told us that coordinating appropriate faith and cultural supports remains a challenge in home and community care. This can be especially difficult in regions that serve high populations of newcomers to Canada.

With regards to retirement homes, the Retirement Homes Act, 2010 states that residents have the right to have their “lifestyle and choices respected and to freely pursue [their] social, cultural, religious, spiritual and other interests”.[796] However, as retirement homes are residential tenancies, these rights are limited; they must not substantially interfere with the reasonable enjoyment of the home for the licensee and other residents.[797]

The LCO commissioned research study offers insights into the adequacy of faith and cultural accommodations and supports in hospitals. The authors surveyed 19 leading Ontario hospitals through website searches and the distribution of questionnaires (three hospitals answered the questionnaires). Interviews with health care providers, and faith and community leaders also complemented the research.

Their findings demonstrate that there appears to be no uniform approach across the province to achieving faith and culturally sensitive care. Regulatory colleges and professional associations advise their members to provide services that respond to the faith and cultural needs of their patients, such as the RNAO guidelines on cultural competence and the CPSO policies on end of life and human rights.[798] Nevertheless, education for health care providers is variable.

Health care providers indicate they do not feel comfortable providing culturally competent and safe care because they receive little formal education to serve patients in this respect. Aside from the lack of education, they spoke about difficulties with requiring health care providers to take on added areas of competence, which could increase their workload – some said there should be a dedicated person with the expertise to address faith and cultural preferences in facilities.[799]

Currently in hospitals, there are few formal policies on faith and cultural issues.[800] Traditionally, chaplains have played a significant role in care settings as experts in faith counselling. Chaplains may belong to one faith or be able to support patients in multiple faiths and spirituality.[801]   Many facilities do not, however, have full-time chaplains and most are Christian, creating inequalities across religious traditions.[802] Additionally, there is a common perception in Ontario that chaplaincy programs are not essential services, and they are the first to be cut when resources are low or system restructuring takes place. Often, patients and families are not asked about their preferences at the bedside and are left to coordinate their own faith and cultural supports.[803]

There are certainly centres of excellence in the province; however, as Latif et al. report, “Where excellent programs exist, they seem to be driven by individual communities and motivated professionals”.[804] The piecemeal approach to integrating cultural competence into care settings has led to inconsistencies in services and, overall, inequalities in access.[805]

The authors of the LCO commissioned paper summarize these and other barriers to integrating faith and cultural preferences as follows:

  • Lack of cultural competence in health care
  • Inconsistent policies supporting culturally sensitive and faith-based care for all denominations
  • Insufficient resources provided to faith-based and cultural supports
  • Inadequate consultation with faith and cultural groups in health policy development.[806]

4.      Strategies to improve culturally competent and safe care in Ontario

There are a number of practical challenges in strengthening accommodations and supports for members of faith and cultural communities during the last stages of life.

The complex web of laws and policies surrounding accommodations for faith and cultural communities makes it difficult for those working in this environment to identify responsibilities and good practices. Persons of good will may be genuinely confused or ill-informed on these issues. The challenge is heightened where legal obligations are inconsistent, such as where the duty to accommodate a faith related need is in contradiction to a health and safety requirement.

As well, this is a setting where resources are scarce and pressures are significant, a reality that must be taken into account in crafting strategies towards holistic approaches to care.

Individuals in the last stages of life and their families may not be aware of the available supports, or be in a position to advocate for them. If accommodations or supports are denied, pathways to enforcement are unclear.

There are multiple strategies that could be used to improve culturally competent and safe care in Ontario. The LCO proposes that these strategies should be framed as accommodations and broader supports that may be part of a person-, family- and community-centred approach to quality care.

Possible solutions that service providers and community members spoke to LCO about include creating educational tools for cultural competence and safety. There are several existing manuals that summarize the traditional beliefs and practices of diverse communities respecting health care, such as the Canadian Multifaith Federal information manual, mentioned above. However, it is unclear how widely these resources are disseminated and how well they are working on the ground. The LCO would like to know more about the usefulness of these tools and whether they might be improved to ensure they are not overly general. We would particularly like to know whether such tools would be helpful in the end of life context.

The LCO could also review the possibilities for requiring Ontario’s regulatory institutions and care settings to create and implement formal policies on faith and cultural integration. We heard that the LHINs, CCACs, long-term care homes and hospitals do not currently serve diverse populations appropriately in terms of language needs, education about eligibility for health care, providing faith and cultural supports onsite and facilitating contact with leaders in the community. Consequently, we wonder if a more coherent approach to systemic change could be realized through a mandatory policy approach.

Although the LCO’s understanding of faith and cultural competence and safety goes beyond accommodations, we would also like to know if more detailed guidance from the OHRC is warranted. The OHRC has a mandate to address systemic discrimination in both government and private sectors, and has recently published its policy on creed. While that policy does give instruction on the overall framework for human rights accommodations, the OHRC could go further in consulting with health care institutions and care settings to establish protocols that prevent and respond to core barriers in this context.

Finally, the LCO recognizes that cultural competence within a multicultural society is not necessarily the same as cultural safety for First Nations, Inuit and Métis peoples. Certain individuals suggested that cultural safety can be used as a lens for all faiths and cultures, yet others said it is most applicable to the contemporary experiences of Indigenous peoples.

As with the LCO’s review of palliative care in Indigenous communities more generally, we recognize that our project can only address cultural safety if there is a desire for us to do so within Ontario’s Indigenous communities. Therefore, we will begin exploring what the LCO’s role concerning cultural safety might possibly be through additional community engagement in early 2017.

5.      Questions for discussion

19. What approaches are best suited to address barriers, accommodations and supports to better integrate faith, cultural and spiritual practices into care nearing the end of life?