IV. Ontario’s Laws, Policies and Programs

A.    Introduction

This chapter summarizes Ontario’s laws, policies and programs. After this chapter, the remainder of the discussion paper analyzes issues that might benefit from reform.

The chapter begins with an overview of Ontario’s regulatory framework for health care funding, planning and delivery. Then, it situates palliative care, health care decision-making, medical assistance in dying and dispute resolution within that framework. Finally, the chapter briefly reviews a number of specific laws that are separate from but intersect with these areas.

As Ontario’s health care system is presently in a state of change, the chapter focuses on providing summary information about the existing regulatory landscape.

B.    Framework for Health Care Funding, Planning and Delivery

1.      Overview of the Ontario’s Regulatory Framework

In chapter 3 we introduced the constitutional foundation for health care in Ontario, which is grounded in the division of powers between the provincial and federal governments. The federal government uses its constitutional spending powers to transfer funds to provinces that provide health care services through insurance plans – OHIP is Ontario’s health insurance plan. Service planning and delivery then rests largely with the provinces.

The legislation governing this arrangement, the Canada Health Act, only covers medically necessary services provided by hospitals and physicians. There is a range of so-called extended health services that are not funded by the federal government and that are significant for the last stages of life, including medications outside hospital and most palliative care provided in private and long-term care homes. As a result, in addition to overseeing the planning and delivery of medically necessary care, Ontario supplements the CHA with provincial funding.

However, there may be limits to eligibility for provincially funded services and some services may receive partial or no funding. For instance, patients who are receiving complex continuing care in hospitals while waiting for admission to long-term care may be required to pay a co-payment for the cost of their meals and accommodation.[145] Once in a long-term care home, residents must also make co-payments for food and accommodation. If a resident is in standard/basic accommodation and is unable to afford the co-payment rate, they may be eligible for financial assistance and have their co-payment amount reduced based on their income.[146]

Retirement homes are an example of an entirely private arrangement. Retirement homes are regulated under the Retirement Homes Act, 2010, but residents are legally tenants who also have rights under the Residential Tenancies Act, 2006.[147] Retirement homes may, but are not required to, offer care services that meet the needs of persons nearing the end of life.[148] In this project, we review concerns that stakeholders raised about palliative care in retirement homes (see chapter 5, “Access to Justice for Communities with Unmet Needs”).

In the following section, we set out Ontario’s existing framework for publicly funded care in the last stages of life. It should be recalled that some of these services may still require co-payments.

2.      Framework for Publicly Funded Care in the Last Stages of Life

Ontario’s framework for publicly funded health care is decentralized. The MOHLTC has overall responsibility for the sector; however, significant planning, funding and accountability functions are delegated to agencies that operate within 14 separate regions across the province.

Despite this distribution of authority, the MOHLTC maintains control over certain matters. It provides partial funding for residential hospices.[149] It funds primary care, physician fees, medications covered in hospital, and other drug programs.[150] It also plays a role in funding and regulating public health initiatives.[151] Moreover, the MOHLTC has a stewardship role that focuses on regulation, strategic planning, policy development and rule-making, investment, performance and accountability for the whole system.[152]

Beneath the MOHLTC sit the Local Health Integration Networks. LHINs are Crown agencies charged with promoting the integration of local health systems within their respective regions under the Local Health System Integration Act, 2006.[153] LHINs plan, fund and ensure the accountability of wide-ranging health services delivered in hospitals, long-term care homes and community support services, as follows:

Hospitals provide many essential services to persons with life-limiting illness in departments, including emergency, intensive care, complex continuing care and palliative care units. Some hospitals also have palliative care consultation teams that visit patients in other wards.[154] Hospital-based palliative care programs and consultation teams may also offer day programs and make house calls.[155] Public hospitals operate under the Public Hospitals Act.[156]

Long-term care homes are “home” for thousands of individuals, many of whom may experience serious frailties, including chronic conditions and dementia.[157] Almost one third of the residents in long-term care pass away each year.[158] The Long-Term Care Homes Act, 2007 requires licensees to train all staff who provide direct care to residents on palliative care.[159] Licensees also have a statutory duty to “ensure that every resident receives end-of-life care when required in a manner that meets their needs”.[160]

Community support services include a mix of initiatives run by community agencies.[161] Visiting hospice programs stand out as an example in this area: their volunteers serve thousands of Ontarians with daily living support, respite for caregivers, counselling, and recreational activities, among other services.[162]

LHINs also fund and oversee CCACs, which are independent agencies that facilitate access to home and community care under the Home Care and Community Services Act, 1994.[163] CCACs coordinate admissions to long-term care and assess eligibility for a range of services provided in the home.[164] The Act stipulates a maximum number of hours that individuals can receive for homemaking and personal support services.[165] In practice, however, CCACs determine eligibility for services.[166] Persons eligible for palliative care may be able to receive added services to help them die at home and their caregivers may also receive supports.[167]

Cancer Care Ontario operates beneath the MOHLTC in parallel with LHINs. Under the Cancer Act, CCO plans, funds and ensures the accountability of services for persons with (or at risk of developing) cancer and kidney disease.[168] CCO manages regional cancer programs in each of Ontario’s 14 regions and works with LHINs and providers to deliver care in different settings.[169]

Finally, the Ontario Palliative Care Network is a recent addition to Ontario’s provincial approach. As discussed below, Ontario has experienced immense difficulties achieving equitable access to palliative care due to a lack of coordination across our decentralized institutional framework and care settings, and a lack of unifying policy. The OPCN was introduced to improve the quality of and equitable access to palliative care for all Ontarians. We discuss the OPCN’s history and mandate in more detail in section C.2, below.

• Readers should be aware that this description of Ontario’s framework (and Figure 2) will be changing in the near future as a result of a legislated restructuring of the system through the recently enacted Bill 41, Patients First Act, 2016.[170] Bill 41 gives the LHINs enhanced responsibility over home and community, primary care and public health care. Most importantly for this project, the LHINs will assume the current responsibilities of the CCACs and sub-regions would be created to deliver care across the 14 LHIN regions.

Ministry of Health and Long-Term Care
Pharmaceuticals	Primary Care	Regional LHINs	Cancer Care Ontario	Residential Hospices
Medications in hospitals are covered under OHIP.	MOHLTC funds and oversees most primary care, which is “first-contact” care such as Family Health Teams.	MOHLTC funds 14 LHINs.	CCO oversees cancer and renal care through 14 regional programs.	MOHLTC funds residential hospices, many of which also receive private funds.
Eligible individuals can receive certain drugs outside hospital under programs such as the Ontario Drug Benefits Program.		LHINs fund and oversee Community Care Access Centres, which purchase and facilitate access to home care services, including palliative care and respite. CCACs set eligibility requirements and coordinate placements in long-term care homes.
		LHINs fund and oversee hospitals, including palliative care units and consultation teams.
		LHINS fund community support services, including visiting hospice, pain and symptom management nurse education and day programs.
		LHINs fund long-term care.
		Some LHINs have developed different palliative care networks that are linked at the provincial level.

Ontario Palliative Care Network

• Executive Oversight (representation from LHINs, CCO, HQO, and QHPCCO)
• Secretariat
• Advisory Councils
• Regional Palliative Care Networks (for each of Ontario’s 14 regions)

C.     Palliative Care

1.      What is palliative care?

The term “palliative care” describes both a philosophy of care and a wide-range of services that are provided to realize the philosophy for individuals and society at large.

Referring to palliative care as a “philosophy” captures its nature as a general approach to providing care that is rooted in assumptions, values and principles.

For example, the World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness…”, among other characteristics.[171] In Ontario, the MOHLTC, LHINs and Quality Hospice Palliative Care Coalition of Ontario define palliative care as,

 [A] philosophy of care that aims to relieve suffering and improve the quality of living and dying. It aims to help individuals and families to:

• address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears
• prepare for and manage self-determined end-of-life choices and the dying process
• cope with loss and grief during illness and bereavement
• treat all active issues and prevent new issues from occurring
• promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization.

Individuals with palliative care needs are those where much (but not necessarily all) of the focus of care is the relief and prevention of suffering and improving quality of life and comfort.[172]

This philosophy is also translated into practice. The “service” dimension of palliative care refers to the actual medical, social and legal services and supports that individuals receive on day-to-day basis, such as treatment, facilitating health care consent and advance care planning conversations, social activities and counselling. These services may be offered by a number of providers alone or in teams across the different care settings mentioned above, which include

• private homes
• long-term care homes
• retirement homes
• hospitals
• residential hospices
• day programs.

A person’s actual care setting, services and supports will depend on her unique needs but, ideally, the approach to caring for each individual will be consistent with the goals that palliative care seeks to achieve.

2.      Origins and evolution of palliative care

i. Early years of advocacy and government involvement

In Ontario, the provision of palliative care as a publicly funded service has resulted from the advocacy efforts of committed health care providers and grassroots organizations.[173] Since the 1960s, palliative care has progressively gained increased attention, publicly and within government, and it has become an integral part of the health care system.

The 1970s and 1980s were “foundational years” for the palliative care movement in Ontario.[174] Ontario’s first community-based hospice opened in 1979, an institute for research and education was founded in 1983 and, by the late 1980s, there were two provincial hospice palliative care organizations (which eventually merged into Hospice Palliative Care Ontario).[175] Important centres of excellence emerged in and around that time, such as the Temmy Latner Centre for Palliative Care, as did notable programs providing home-based palliative care.[176]

Whereas during its early years of development palliative care was aimed at persons with terminal illness, especially cancer, it gradually became more inclusive of different conditions along the life-course.[177] Throughout this early period, however, palliative care services reflected the demands of local challenges – they were largely confined to isolated programs established by community advocates in the locations where they worked.

Federal and provincial government involvement in palliative care grew from the 1990s on.[178] Ontario’s commitment of funding in 1992 for community palliative care was a milestone for the movement, even if it was “not closely coordinated or distributed across the province”.[179] Furthermore, the federal Senate brought palliative care to the national stage in the 1990s, when it began a series of report on the subject.[180]

In 2005, Ontario launched a three-year End-of-Life Care Strategy, which aimed to shift end-of-life care from acute settings to the home and to enhance the coordination of service delivery.[181] Important components of the strategy were its funding for community providers and the establishment of palliative care “networks” embedded within some of Ontario’s LHINs.[182] Not all LHINs have established networks and they do not all operate with the same degree of representation and participation. The networks that are functional bring together individuals and organizations interested in palliative care in order to promote integrated care, and they are linked at the provincial level.[183]

An evaluative review of the End-of-Life Care Strategy found that it had some positive impacts, but also challenges. For instance, more patients had been served and the strategy may have resulted in broader identification criteria; however, “individual patients did not use more home care or less acute care services after the implementation”.[184] And beyond the creation of the networked-approach to management at the LHIN level, the strategy did not establish an overarching regulatory framework for palliative care.

ii. Agreement on a Declaration of Partnership

In 2011, acknowledging that there was still “a tremendous gap” in services, the MOHLTC, LHINs and Quality Hospice Palliative Care Coalition of Ontario (QHPCCO) agreed on a vision document “to provide equitable access to safe, comprehensive and high quality palliative care and support for individuals and their families across the province”.[185]

The document, Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnership and Commitment Action (Declaration of Partnership) accomplishes a number of tasks, including elaborating a coherent definition of palliative care, agreeing on core values and assumptions, and formulating a model for service delivery.

The Declaration of Partnership asserts that palliative care may enhance other types of restorative and rehabilitative care, is most effectively delivered in teams and should be integrated at multiple scales within Ontario’s regulatory framework – at the clinical, organizational and overall system levels.

Important to the LCO’s project, it also recognizes an inclusive approach to identifying persons who could benefit from palliative care. According to the Declaration of Partnership, palliative care is “appropriate for any individual and/or family living with, or at risk of developing a life-threatening illness, at any time they are prepared to accept this type of care and support”.[186]

It links chronic disease management with palliative care, so that coordinated planning occurs throughout the chronic disease and aging process. Moreover, its model for service delivery requires that “[i]n each setting where individuals die, there is a clearly defined care program that is founded on the palliative care philosophy and approach”.[187]

In short, the Declaration of Partnership is the most comprehensive, ambitious vision for palliative care in Ontario to date.

A steering committee was formed in 2012 to implement the Declaration of Partnership.[188] The committee was comprised of representatives from government, LHINS, CCACs, Cancer Care Ontario, professional associations, hospitals, community organizations and others.[189] It held a series of meetings and delegated work items to be undertaken by a Clinical Council and Working Groups, some which produced expert reports.[190]

Despite these initial steps, however, in December 2014 the Auditor General of Ontario released the results of an investigation into the state of palliative care, which found that “three years after its creation, significant work still needs to be done to meet most of the commitments made in the Declaration of Partnership”.[191]

The Auditor General observed that services in Ontario evolved in a “patchwork fashion” according to the sites in which advocates were located and that, “although efforts have been made to create an integrated, co-ordinated system… no such system yet exists”.[192] Notably, she found that Ontario lacks standard eligibility criteria for services, a common process to identify patients, equitable access to palliative care across the regions and public education.

Among other recommendations, the Auditor General of Ontario proposed the design of a government-approved policy framework:

The Declaration of Partnership should be linked to a policy framework for approval by the government. This framework could outline the necessary direction and funding to support the implementation of the commitments.[193]

iii. Proposal for a provincial strategy and the Ontario Palliative Care Network

In November 2014, while the Auditor General’s report was being prepared, the Minister of Health and Long-Term Care mandated his Parliamentary Assistant, John Fraser, to lead the development of a strategy on palliative care. In addition, Fraser was mandated to oversee the expansion of residential hospices to almost double the number of beds in the province.[194] Fraser held 16 roundtables with dozens of individuals, organizations and hospices over the course of several months.[195] The results of his consultations were then reported in the Palliative and End-of-Life Care Provincial Roundtable Report (Fraser Report).[196]

The Fraser Report was released in March 2016 along with an announcement that the government invested increased funding through the Provincial Budget to strengthen community-based hospice and palliative care.[197]

The Fraser Report confirms much of what had been recorded previously in the Declaration of Partnership and Auditor General report on the state of palliative care in Ontario. It also makes new findings of interest to the LCO’s project that we rely on in this discussion paper. Of particular interest to our project are the following findings:

• Families and caregivers find the health care system difficult to navigate.
• Diverse communities face unique barriers accessing palliative care, such as rural and northern communities, francophone persons, cultural groups and Indigenous peoples.
• Long-term care homes should be a part of the continuum of palliative care.[198]
• Caregiver supports should be improved.
• Public education and awareness should be enhanced.

• The LCO’s project examines these issues as part of the remaining chapters of this report.

 In conjunction with the Fraser Report’s release, the government also announced the inauguration of a provincial-level “network” that brings together various partners to drive implementation of consistent quality hospice palliative care across the province, called the Ontario Palliative Care Network.[199]

Ontario Palliative Care Network

The OPCN is an organized partnership of community stakeholders, health service providers and health system planners, accountable for the development of a coordinated, standardized approach to the delivery of hospice palliative care in Ontario. The OPCN’s mandate is to

• act as a principal advisor to government on hospice palliative care in Ontario
• be accountable for quality improvement initiatives, data and performance measurement and system level coordination
• support regional implementation.

The OPCN governance structure is multifaceted. It includes an Executive Oversight with representation from the LHINs, Quality Hospice Palliative Care Coalition of Ontario, Cancer Care Ontario and HQO. There are several Advisory Councils that focus on clinical improvements, data and information, implementation and community partnerships (with representation from diverse providers, care settings, geographies and patient groups). There is also a Secretariat with staff to support the OPCN operational and tactical activities and, generally, execute the OPCN mandate.

As part of the OPCN structure, Regional Palliative Care Networks are being created for each of Ontario’s 14 regions. For each region, the LHIN CEO and regional cancer program VP will jointly oversee the networks to ensure that planning and implementation is aligned with the OPCN’s provincial standards.

The OPCN builds on existing institutional arrangements in Ontario. Therefore, providers will continue to deliver palliative care through the LHINs, MOHLTC and CCO. However, they will do so in conformity with the new provincial standards.

Figure 3:   Timeline of Recent Palliative Care Initiatives in Ontario

2005	Ontario initiates End-of-Life Strategy (ending in 2008)
2011	MOHLTC, LHINs and QHPCCO release Advancing High Quality, High Value Palliative Care in Ontario:  A Declaration of Partnership and Commitment to Action
2014	Auditor General of Ontario releases a review of palliative care calling for improvements, including a government-approved policy framework
2014	Minister of Health and Long-Term Care mandates MPP, John Fraser, to support the development of a strategy on palliative care and oversee the expansion of residential hospices
2016	MOHLTC announces measures to improve palliative care, including ·   establishment of the Ontario Palliative Care Network ·   proposal of $75 million investment over three years ·   release of Palliative and End-of-Life Care Provincial Roundtable Report (Fraser Report)

iv. Ongoing non-governmental initiatives

Another way in which the government has recently committed to improve palliative care is through partnering with HPCO to provide training to hospice volunteers.[200] Beyond this initiative and others that the government supports, community organizations, regulatory colleges and professional associations have maintained their record of leadership in this area, and they develop independent programs and resources.

For example, the Registered Nurses’ Association of Ontario and CPSO have drafted policies and practice guidelines for providers.[201] The Ontario Medical Association (OMA) has been leading an end-of-life strategy and has published guiding documents.[202] HPCO offers a great variety of training and educational opportunities on all aspects of palliative care and it has initiated a community of practice on health care consent and advance care planning. [203]

Given the importance of non-governmental initiatives in this area, we have listed associated publications alongside key government documents in Figure 4, below.

Figure 4:   Essential Palliative Care Documents for Ontario

A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice (CHPCA, 2013)

Advancing High Quality, High Value Palliative Care in Ontario:  A Declaration of Partnership and Commitment to Action (MOHLTC, LHINs and QHPCCO, 2011)

Palliative and End-of-Life Care Provincial Roundtable Report (MOHLTC, 2016)

End-of-Life Care During the Last Days and Hours (RNAO Clinical Guideline, 2011)

Planning for and Providing Quality End-of-Life Care (CPSO Policy, 2015)

End of Life Strategy Framework (OMA, 2014)

Health Care Consent Advance Care Planning Community of Practice Glossary (HPCO, 2016)

Patients First: Action Plan for Health Care (MOHLTC, 2015)

3.      Emerging directions: the public health approach to palliative care

i. Introduction

 The public health approach to palliative care is a theoretical model that complements the main tenets of palliative care. It aims to have palliative care treated as a matter of broad public interest.

During the LCOs consultations we were urged to consider reviewing the public health approach as the next step in an evolving philosophy of palliative care. However, in our review process, it became apparent that the approach itself is still developing and, therefore, difficult to study. Indeed, scholars acknowledge the “breadth”, “ambiguity” and “lack of clarity” in this emerging area[204] – there are limits to the available information among proponents, researchers and also for the LCO.

In this section, we nonetheless seek to draw out some of its major features from the existing literature. We pose questions that we believe require further clarity throughout and, particularly, in the concluding part. Notably, we ask what the public health approach might look like on the ground as a matter of law reform.

ii. Overview of the public health approach

Not unlike palliative care, generally, the public health approach is premised on the “recognition of the limitations of traditional models of health care delivery”.[205] Some of the principles shared between palliative care strategies and this approach include person- and family-centred care, involvement of non-specialists (such as primary care providers, social workers and PSWs), and equitable access for the entire population.[206]

However, the public health approach has a distinctive focus on social aspects of care: it seeks to integrate palliative care into everyday living through raising public awareness, supporting healthy attitudes about death and dying, and fostering community engagement.[207] It critiques palliative care focused on “inpatient, outpatient, day care and home care services and not community development”.[208]

The public health approach overlaps with initiatives that go by the terms, “compassionate communities”, “compassionate cities”, and “health promoting palliative care”.[209] These initiatives have progressed over several decades in parallel with the palliative care movement and they have been integrated into government strategies in various jurisdictions.[210]

The major focus of these initiatives that can be discerned from the literature (and that do not overlap with recent palliative care models), include

• community capacity-building and engagement
• public awareness and education about death and dying.

We discuss these two major features of the public health approach below.

iii. Community capacity-building and engagement

As discussed previously in this paper, advancements in palliative care first arose at the community level with the development of hospices and other centres of excellence. The public health approach to palliative care seeks to build on this history of past successes at the local level and to foster more community engagement with government support.

The rationale for community engagement is based on a number of principles. First, given the social-orientation of this approach, it views the responsibility to care for persons who are dying and their supporters not only as a responsibility for government, but also for surrounding community, including neighbours, workplaces, schools, local businesses and others.[211]

It is important to remark that the concept of community responsibility should not be mistaken for offloading responsibility onto communities in order to decrease government input and achieve certain outcomes. Rather, community engagement from the public health perspective can be understood “as an empowerment model” that strengthens community capacity to develop responses to caring for their own members.[212]

Prof. Allan Kellehear, the founder of health promoting palliative care, explains that some of the problems persons living with life-limiting illness encounter include social isolation, family breakdown, premature job loss and financial strain.[213] Many of these problems, he says, “are not easily addressed by health services”.[214] Moreover, he claims that palliative care services have struggled to provide bereavement support to family and friends.[215]

Whereas families have long shared responsibility with the health care system to provide for persons in the last stages of life, advocates of the public health approach claim that community members also have a role to play in addressing such challenges. In Kellehear’s words, “Health is everyone’s responsibility”.[216]

According Kellehear and other advocates, the public health approach means enabling communities to provide the social aspects of palliative care (e.g., food, transportation, company) that supplement clinical interventions provided through the health care system. Community engagement they claim,

allows for the provision of a continuous background level of support that is developed pertinent to specific needs within the community, upon which discrete episodes of professional intervention can occur.[217]

Examples of Community Capacity-Building and Engagement

There are many examples of community capacity-building and engagement for palliative care in Ontario and abroad. In Ontario, local initiatives that emerged organically alongside the palliative care movement have begun to expand and self-identify with “compassionate communities” through initiatives, such as Pallium Canada’s national and the HPCO’s provincial compassionate communities community of practice.[i][218] The Windsor-Essex project is an initiative that gives a good example. Among other components, it involves mobilizing youth, faith, cultural, senior and informal social networks to generate volunteer opportunities; introduces a phone service for advice in distressing situations; and includes the formation of care networks for people in the last year of life with dementia or who need personal support with daily living activities. The Windsor-Essex project involves partnering with government agencies and departments at the federal, provincial, LHIN, county and municipal scales.[ii][219] Compassionate communities have also received considerable attention and support in other common law jurisdictions, including England, Australia and Scotland. In Australia, for instance, a national palliative care association published a guide for local health care service providers to foster community development and education.[iii][220] A number of local initiatives have also been funded through the federal Department of Health and Ageing “Caring Communities” program.[iv][221] A “Compassionate Cities Charter” is being used by local governments to assist them formulate and achieve related goals.[v][222] The charter signals a government’s commitment to ensure that institutions within their jurisdiction support wellbeing in the context of death and dying, including schools, workplaces, faith communities, correctional facilities and shelters.[vi][223] In Ontario, the Windsor-Essex project has created its own charter and statement of values.[vii][224]

A notable claim of the focus on community engagement is that it is particularly supportive of marginalized and disadvantaged groups.[225] For instance, the public health approach has been tendered as a framework for “age-friendly communities” that promote participation and autonomy for older persons nearing end-of-life.[226] Community-mobilization has also been used to empower First Nations health care providers to create culturally appropriate locally designed and controlled palliative care programs in four diverse First Nations communities in Ontario.[227]

Given the public health approach’s focus on community capacity-building and engagement, the LCO would like to know more about how legal frameworks might empower community members to become involved in palliative care in a manner that is voluntary and not motivated by resource concerns.

iv. Public awareness and education

Public awareness and education is another core feature of the public health approach to palliative care.

In Ontario, public awareness of palliative care is limited.[228] However, a lack of knowledge or misperceptions can inhibit access to services and supports. The Auditor General’s report recognized this connection between education, awareness and access to care. It explains,

To help patients who could benefit from palliative care, more people need to learn what palliative care entails, what services exist in the community, and how to access these services. Otherwise, there is a risk that patients will suffer unnecessarily by not receiving timely palliative care….[229]

Participants in the Fraser Report consultations also spoke about the public’s misperceptions about palliative care, which they view as a final option when “nothing else is working”.[230] The report explains: “Too many people think that palliative care just helps people die comfortably, instead of helping them to live longer and better”.[231]

The public health approach recognizes the need for better understandings of palliative care, but it also focuses more specifically on the need for transformational change in the public’s perceptions of death, dying, loss and bereavement.

A core objective of the approach is to promote healthy, life-affirming attitudes about dying and grieving as normal human experiences.[232] Thus, it seeks to combat “death-denying” practices that, potentially, lead to “many people and their loved-ones being unwilling or unable to openly discuss their preferences and priorities for care and death, views on organ donation, prepare a will or plan a funeral”.[233]

During the LCO’s consultations, we heard from numerous stakeholders who held views akin to this perspective. For example, we heard that more needs to be done to secure the dignity of patients and their supporters by helping them understand the repercussions of their situation and the available options. This could better enable them to be actively engaged as participants in their own life course. We also heard that key messages from the public health perspective for Ontario would be a shift in thinking about death, dying, loss and bereavement.[234]

Community engagement is one of multiple channels through which the public health approach aims to enhance awareness.[235] Other channels might include combatting negative attitudes from an early age in school curriculums;[236] sensitizing non-specialized health care providers to identify those who might benefit from palliative care (such as family doctors and primary care nurse practitioners); and encouraging open conversations with individuals, families and providers about health care consent and advance care planning.[237]

v. Incorporating the public health approach into legal frameworks

Earlier in this chapter, we summarized Ontario’s regulatory framework for health care planning and delivery. The question for the LCO’s project here is how the public health approach to palliative care would feature in this regulatory framework, if it were determined to be beneficial for Ontarians. This central question raises several lines of inquiry.

For instance, it is unclear to the LCO whether proponents of this approach seek to replace palliative care models with something wholly different or to complement dominant models with improved government support for community engagement and public education. In either case, we would like to know more about what these proposals would require in practice in terms of laws, policies, funding and service delivery.

Presently the MOHLTC and LHINs have ongoing initiatives both on community engagement and public education. For instance, local palliative care initiatives may already be aligned with the compassionate communities model, such as residential hospices and community support services (e.g., visiting hospice volunteers, day programs, and pain and symptom management education). These initiatives can be viewed as a marriage of bottom-up organizing by community members and top-down support from the government.

Furthermore, the Fraser Report highlights stakeholder submissions on the desire for innovative community-based models, and enhanced public awareness and education.[238] And the Erie St. Clair LHIN has explicitly recognized the public health approach as well as community capacity-building and public awareness in its regional palliative care strategic plan.[239]

Taking into account these existing initiatives, we ask whether increased government support for such efforts would fulfil aspirations for the public health approach.

The LCO is also aware that advocates in this area are seeking to link palliative care directly to public health systems.[240]

In England and Scotland, partnerships between palliative care and the public health system have been called for in government policies on palliative care.[241] Additionally, in Scotland, the national Public Health Network has issued a report with recommendations for the public health system to develop the roles of public health specialists in the context of palliative care.[242]

At this moment in the project, the LCO has been unable to determine how successful these efforts are on the ground. Furthermore, we wonder how applicable these comparisons might be in the context of Ontario’s unique public health system.

Previously in this paper we stated that the MOHLTC plays a role in funding and overseeing public health in Ontario. According to the MOHLTC, “The primary focus of public health is the health and well-being of the whole population through the promotion and protection of health and the prevention of illness”.[243] Public health programs and services seek to address determinants of health – such as income, social support networks, education, working conditions and personal coping skills – and to reduce health inequities.[244]

A fundamental concern of the public health system is health promotion and chronic disease prevention through public awareness and capacity-building for municipalities, schools, workplaces and other community partners[245] – all of which might provide relevant experience for similar initiatives addressing palliative care.

However, a substantial part of public health work in Ontario is concerned with issues that are quite distant from palliative care principles and practices, such as emergency preparedness, environmental safety standards and infectious disease prevention and control.[246]

Moreover, public health institutions are quite separate from the overall health care system. Under the Health Protection and Promotion Act, programs and services are managed by 36 local boards of health and delivered by public health units with specially qualified staff. Also, municipalities are significant partners in funding and administering the public health system.[247]

Given the unique design of Ontario’s public health system and its mandate, further information is needed to understand what advocates propose. The LCO would like to know more about what proponents believe involving Ontario’s public health system in the planning and delivery of palliative care would achieve and require.

4.      Issues for the LCO’s project

The above discussion makes it clear that Ontario’s regulatory framework for palliative care is in a state of change. Reliable sources report that Ontario’s system for palliative care suffers from a lack of coordination and difficulties serving certain populations – all of which of have led to inequities in accessing care. The MOHLTC is moving forward to address these challenges with new investments and the establishment of a provincial network to coordinate and improve palliative care across the province, the OPCN.

As mentioned previously, the LCO’s project avoids reviewing issues that fall within the MOHLTC and the OPCN’s priorities. The most notable issue areas that we do not address as a result of their mandates are

• institutional coordination
• education and training for health care providers
• the overall enhancement of Ontario’s palliative care services and supports.

The LCO’s project does, however, address issues in Ontario’s developing regulatory framework that supplement the MOHLTC and the OPCN’s efforts.

Accordingly, among other issues, the LCO’s project seeks to address the concerns of communities with unmet needs to ensure equitable access to care regardless of characteristics such as their age, sexual orientation and identity, abilities, and place of residence (chapter 5). We review benefits for caregivers and other family and friends (chapter 5.D.1). And we also review navigational supports that could assist individuals as they transition through the system from one care setting to another (chapter 7).

In addition, in this chapter, we presented various options for the integration of public health approaches into Ontario’s legal frameworks. A question relating to this issue is posed at the end of this chapter at section 1, “Questions for Discussion”.

D.    Health Care Decision-Making

1.      Informed consent and advance care planning

Whether a choice needs to be made to provide treatment for palliative or other forms of care, laws that regulate decision-making are an essential part of care during the last stages of life.

Ontario’s statutory framework for informed consent and advance care planning took shape following a monumental reform effort spanning the late 1980s and early 1990s.[248] The regime that resulted is extensive, intricate and nuanced. It reflects principles of dignity and integrity, and it balances other principles that may conflict when making important choices about health care matters, such as autonomy and safety from harm.

At the core of Ontario’s regime are two statutes:

• The Substitute Decisions Act, 1992, which addresses decisions related to property management and personal care, and identifies the appointment processes and the duties of guardians and those acting under powers of attorney (POA).

• The Health Care Consent Act, 1996, which addresses consent to treatment, admission to long-term care homes and personal assistance services for residents of long-term care homes.

The LCO’s project on Legal Capacity, Decision-Making and Guardianship comprehensively reviews the SDA and HCCA. In contrast, this project addresses narrow issues that frequently arise for health care decision-making nearing the end of life. To address these narrow issues, it is necessary to first set out key features of Ontario’s framework, which we briefly summarize here: capacity and informed consent, substitute decision-making, advance care planning and plans of treatment.

i. Capacity and informed consent

Capacity and informed consent are fundamental to Ontario’s legal framework for health care decision-making. Persons who are capable have the right to make decisions for themselves and are held to be responsible for those decisions. On the other hand, those who have been determined to lack capacity in an area of decision-making or for a particular decision may lose the right to make corresponding decisions: others will be responsible for making decisions on their behalf and can be held accountable for how the decisions are made.[249]

Health care providers are required by law to obtain informed consent from a capable individual or a substitute decision-maker prior to administering treatment, except in emergencies.[250] This means that health care providers are not permitted to make treatment decisions on a patient’s behalf, unless an emergency situation requires it.

The HCCA defines treatment generally as “anything that is done for a therapeutic, preventative, palliative, diagnostic, cosmetic or other health-related purpose” with some exceptions set out in the legislation.[251] It also includes a course or plan of treatment.

Because determinations of capacity affect our autonomy interests, the HCCA codifies a clear presumption that we are all capable of making treatment decisions for ourselves.[252] This presumption of capacity is reinforced by the entitlement that health care providers and others have to rely on the presumption of capacity, unless they have reasonable grounds to believe that a person is incapable.[253]

If a health care provider must assess a patient’s capacity, there is a statutory test to be followed. This test is commonly referred to as the “understand and appreciate” test. It requires that a person have the ability to understand information relevant to making a decision, and the ability to appreciate the reasonably foreseeable consequences of making a decision (or of not making a decision).[254]

The focus of Ontario’s capacity test is on the functional requirements of a particular decision and not on a particular diagnosis, the outcome of the patient’s decisions, or an abstract judgement of abilities.[255] Moreover, a patient may be capable with respect some decisions but not others, and his capacity may fluctuate over time.[256] For example, someone who is in the last days of her life, may experience the periodic loss of consciousness as a result of her condition or medications. She may be capable of making decisions about her treatment at certain times but not at others.

For a capable person to consent to health care treatment, his consent must relate to a specific treatment, be informed and voluntary, and must not be obtained through misrepresentation or fraud. Under the HCCA, “informed consent” requires that information is provided on the nature, expected benefits, material risks and material side effects of the treatment as well as on alternative courses of action and the likely consequences of not having the treatment. Informed consent also requires that the person receives responses to his or her requests for additional information about those matters.[257]

If a patient has been determined to lack capacity and a decision must be made, an SDM will be authorized to do so in her place.

ii. Substitute decision-making

“Substitute decision-maker” is a generic term that refers to a person who is authorized to make decisions on someone else’s behalf. In this context, an SDM is a person who is authorized to give or refuse consent to treatment on behalf of another person who has been found to lack the capacity to do so.

Due to the time-sensitive nature of decision-making related to health care, the HCCA sets up a simple system for determining the identity of an SDM where one is required. The statute lists persons who may act as SDMs in descending order of preference, as follows:

1. The person’s guardian of the person, if the decision required falls within the guardian’s scope of authority
2. The person’s attorney for personal care, if the decision required falls within the attorney’s scope of authority
3. A representative appointed by the Consent and Capacity Board, if the decision falls within the representative’s scope of authority
4. The person’s spouse or partner
5. A child or parent of the person, or a children’s aid society or other person who is lawfully entitled to give or refuse consent in the place of a parent
6. A parent of the person who has only rights of access
7. A sibling of the person
8. Any other relative of the person (including those related by blood, marriage or adoption).[258]

There are a number of terms used in the list above that require an explanation, such as “guardian of the person” and “attorney for personal care”. Guardians of the person may be appointed following an application to the Superior Court of Justice. The procedures for such an application are stipulated in the SDA.[259] An attorney is a person named in a power of attorney, which is a legal document that an individual can use to authorize another person to make decisions on her behalf in accordance with the SDA.[260] The word “attorney” in this context should not be confused with a “lawyer”.

Regardless of whether an SDM is authorized to make a decision under this hierarchical list as a guardian, spouse or other type of individual, she must meet certain requirements. For instance, an SDM must be capable with respect to the decision to be made, available and willing to assume the responsibility.[261] If no person identified through the hierarchical list meets all of the HCCA requirements, the Public Guardian and Trustee must make the decision.[262]

Once an SDM is authorized to make a treatment decision, he must follow steps that are required under the HCCA to arrive at the decision. First, he must respect the prior capable wishes of the individual, if those wishes are applicable to the circumstances and are possible.[263] If the patient expressed no prior applicable wishes while capable, then the SDM must make a decision in the patient’s best interests, taking into consideration the following:

• The values and beliefs a person held when capable
• Other wishes expressed while incapable
• Whether treatment is likely to:
  • improve the person’s condition or well-being
  • prevent the condition or well-being from deteriorating
  • reduce the extent or rate of deterioration
• Whether the person’s condition or well-being is likely to improve, remain the same or deteriorate without the treatment
• Whether the benefit of the treatment outweighs the risks of harm
• Whether less restrictive or less intrusive treatment would be as beneficial as the proposed treatment.[264]

SDMs are entitled to receive all of the information a patient would receive in order to give or refuse informed consent through the above process.[265] Furthermore, prior to administering treatment, health care providers are required to ensure that SDMs give or refuse consent in accordance with the HCCA, including through this decision-making process.[266]

Considering the range of wishes, values and beliefs that an individual may hold, and the various conditions that a person may experience, SDMs may give or refuse consent to treatments that produce very different outcomes that may be appropriate in a given case, including administering, withholding or withdrawing life-supports.

iii. Advance care planning

Advance care planning is a process that involves a patient identifying a future SDM for himself, and/or a patient sharing wishes, values and beliefs that an SDM must interpret when making decisions on his behalf.

The LCO has adapted the definition of advance care planning used by the HPCO Health Care Consent Advance Care Planning Community of Practice as follows:

Advance Care Planning (ACP)

The Substitute Decisions Act, 1992 and Health Care Consent Act, 1996 govern ACP in Ontario. ACP is a process that involves the mentally capable patient: 1.      IDENTIFYING his/her future SDM, by either a.       Confirming his/her satisfaction with their default/automatic substitute decision-maker in the SDM hierarchy list in the HCCA (presented above) OR b.      Choosing someone else to act as SDM by preparing a power of attorney for personal care (the formal written document, discussed above). 2.      SHARING HIS/HER WISHES, VALUES AND BELIEFS through conversations with the SDM and others that clarify her/her       wishes, values and beliefs, and more generally how he/she would         like to be cared for in the event of incapacity to give or refuse     consent (e.g., What is quality of life to the patient? What is     important to the patient with respect to his or her health?)  ACP does not constitute consent to treatment. Except in emergencies, health care providers must always obtain consent from an individual or SDMs prior to administering treatment, even if the individual has engaged in ACP. Obtaining consent is a continuous process that must precede every treatment. When substitute consent is required, known wishes, values and beliefs service to guide the SDMs’ decision-making process. Because a person’s wishes, values and beliefs may change over time, later wishes expressed while mentally capable prevail over earlier wishes. ACP can be initiated and reviewed at any time, not just at end-of-life.[i][267]

Readers may be familiar with terms, such as advance directive, living will or advance care plan. These terms are not legally defined in Ontario law.[268] Although they are used commonly, they are borrowed from decision-making regimes in jurisdictions outside Ontario, including Canadian provinces and foreign jurisdictions.[269]

In those jurisdictions, these terms may refer to documents that can be used to instruct a health care provider to administer treatments directly when a patient becomes incapable, without first obtaining consent from an SDM. Ontario law, however, requires that health care providers always obtain consent – even where a patient has engaged in advance care planning or has documented wishes.[270]

The LCO’s project on capacity and decision-making reviewed the HCCA’s existing requirements for consent to treatment and found that

The HCCA strikes a careful balance on these issues…. This emphasis on the role of the SDM in conveying and interpreting the prior capable wishes and in providing consent as particular issues arise differs in important ways from the status in other jurisdictions where “advance directives” may bindingly speak directly to the treating health practitioner.[271]

In that project, the LCO did not recommend amending Ontario’s laws on the process for obtaining consent and advance care planning. Furthermore, the LCO agrees with the HPCO community of practice’s statement that using terminology, such as advance directive, “may cause confusion and misrepresentation of [health care consent] or ACP. It is suggested that these terms should not be used when referring to advance care planning to avoid confusion”.[272] (Additional considerations related to advance care planning are discussed in section 6.B).

iv. Plans of treatment

Under the HCCA, the definition of “treatment” includes a plan of treatment. A plan of treatment is defined as a plan that is developed by one or more health care practitioners to deal with health problems that are present or likely in the future given the person’s current health condition.[273] Plans of treatment provide for the administration of various treatments or courses of treatment, including the withdrawal and withholding of treatment, in light of the person’s current health condition.[274]

As treatment decisions, plans of treatment require informed consent. Therefore, as with all consent to treatment, patients must be able to access the information necessary to make a decision within the context of their existing condition. Plans of treatment reflect the fact that “the HCCA limits consent to treatment to time-limited and contextualized decisions, grounded in the patient’s current health condition”.[275]

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 himself can engage in advance care planning.[276] (Withdrawal and withholding of treatment are discussed in greater detail in section 6.C.3).

2.      Issues for the LCO’s project

In comprehensively reviewing the SDA and HCCA, the LCO’s project on Legal Capacity, Decision-Making and Guardianship addresses significant questions in this area, which we may apply in the project, but do not reconsider. Some of the recommendations in that project include the following, among others:

• Creation of official Guidelines for capacity assessments under the HCCA
• Strengthening the role in this area of professional educational institutions and of the health regulatory colleges in providing training and education, as part of their quality assurances initiatives
• Amending the HCCA to allow individuals to exclude a particular individual or individuals from appointment under the hierarchy set out in that statute
• Creation of a central clearinghouse for information for SDMs and persons directly affected by the law
• Strengthening the provision of information under the HCCA to patients and SDMs.[277]

There are two major issues that stakeholders brought to our attention for this new project. The first issue concerns whether a “package” of informational supports and practice tools can be designed to promote decision-making about common end-of-life treatments that is meaningful and consistent with the law (see chapter 6.D). We briefly introduced this topic earlier in the discussion paper at section 2.B.

The other issue concerns who has legal authority to decide whether a person is offered or receives life-saving or life-sustaining treatment. There are ongoing debates about whether SDMs or health care providers ought to decide these matters for an incapable person when, in the health care provider’s opinion, life-supports would be of little or no “beneficial” value. These debates raise very sensitive issues about quality of life, rights to autonomy in decision-making and the security of patients who cannot make end-of-life choices for themselves. The LCO examines them in chapter 6.B.

• The LCO commissioned two expert research papers on these subjects for this project and one for the capacity and decision-making project. Their findings were incorporated into ch. VI of this discussion paper. They can also be found online here: http://www.lco-cdo.org/en/last-stages-of-life.

E.     Medical Assistance in Dying

1.      State of the law on medical assistance in dying

In the Supreme Court’s 2015 decision in Carter, the Court found that criminal sanctions against physician assisted dying under the Criminal Code violate the Charter in certain circumstances. The Court found that physician assisted dying is available to competent adults who consent to the termination of life and who have a grievous and irremediable medical condition that causes enduring, intolerable suffering to the individual.[278]

The Court suspended its declaration of invalidity of the Criminal Code provisions for 12 months.[279] Following a change in government at the federal level, the new Liberal government was granted a request to extend the suspension of the Supreme Court’s declaration of invalidity, which expired on June 6, 2016.[280]

i. Federal developments

Prior to the Supreme Court’s decision coming into effect, the federal government introduced a Bill in Parliament to regulate “medical assistance in dying”.[281] The term “medical assistance in dying” (MAID) is now preferred in Canada’s policy landscape because it recognizes that, in practice, this service is being delivered in teams of health care providers, not only by physicians.

The federal Bill, An Act to Amend the Criminal Code and to Make Related Amendments to Other Acts (Medical Assistance in Dying), became law in late June 2016. Therefore, there was a period of adjustment and limited availability of physician assistance in dying before the federal legislation was passed. We discuss the implications of this period of adjustment after setting out the new legislative scheme, below.

Under the Criminal Code, medical assistance in dying can be delivered in two ways:

1. A physician or nurse practitioner can administer a substance that causes death to a person at that person’s request.
2. A person can self-administer the substance obtained with a physician or nurse practitioner’s prescription.

The Criminal Code exempts individuals involved in the process from criminal liability, including the physician, nurse practitioner and anyone who does anything to aide them.[282] It exempts anyone who aids the patient to self-administer at the patient’s request.[283] Furthermore, it protects pharmacists who dispense associated medications with a valid prescription.[284]

The Criminal Code also now explicitly sets out eligibility criteria, procedural requirements and safeguards against abuse. Persons who are eligible for medical assistance in dying must be entitled to Canadian health insurance, be at least 18 years old, make a voluntary request, give informed consent and have a grievous and irremediable medical condition. A “grievous and irremediable medical condition” is further defined to limit eligibility to persons who are dying – which is to say that their natural death is “reasonably foreseeable”. This criteria excludes individuals who may suffer as a result of physical or mental conditions, but who are not dying. The Criminal Codes describes grievous and irremediable harm as follows:

Grievous and irremediable harm medical condition

 A person has a grievous and irremediable medical condition only if they meet all of the following criteria:

• They have a serious and incurable illness, disease or disability;
• They are in an advanced state of irreversible decline in capability;
• That illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider to be acceptable; and
• Their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.

The other eligibility criteria mentioned above (i.e., informed consent and age) mean that children under 18 cannot receive medical assistance in dying, nor can persons who do not have legal capacity for health care decision-making. There is no provision for substitute decision-making for medical assistance in dying. A further requirement for consent immediately before receiving the service also restricts individuals from making a request in advance through an advance care planning document that would become effective if the person became incapable in future.[285]

In light of these particular considerations, the federal government is following through on commitments made on behalf of the Ministers of Justice and Health to initiate the independent review of issues “relating to requests by mature minors…, to advance requests and to requests where mental illness is the sole underlying medical condition”.[286] The government announced on December 13, 2016 that they have engaged the Council of Canadian Academies (CCA) to conduct independent reviews related to these specific types of requests for medical assistance in dying. As part of the review process, the CCA will consider evidence from national and international experts, other levels of government, health care providers, and stakeholders impacted by the issues under review. The studies will be completed within two years and will be made available to Parliamentarians and the public by December 2018. [287]

As for procedural issues and safeguards, the Criminal Code now contains several interrelated provisions. Among other requirements patients must

• be informed of alternative means to relieve their suffering, including palliative care, before giving consent
• make the request in writing before two independent witnesses
• obtain the opinion of two independent physicians or nurse practitioners that they satisfy all required criteria
• wait 10 days before receiving medical assistance in dying (unless their death or loss of capacity is imminent)
• be given another opportunity to withdraw immediately before receiving the service and, at that time, express consent again.[288]

Finally, the Minister of Health will make regulations respecting the collection of information relating to medical assistance in dying requests for the purposes of monitoring the practice.[289] After five years, the Act will be reviewed by a Parliamentary committee that is also mandated to report on the state of palliative care in Canada.[290]

ii. Ontario developments

The federal government’s action on medical assistance in dying is a skeletal framework that serves to create a “carve-out” or exemption to the Criminal Code – it does not speak clearly to the pathway that individuals and providers follow when it comes to accessing provincial health care services on the ground. Therefore, the provinces have supplemented the federal legislation with measures to enable medical assistance in dying as a publicly funded service.

In Ontario, MAG and the MOHLTC have worked together to clarify that patients should consult directly with their health care providers about medical assistance in dying and, in turn, health care providers should consult their regulatory colleges about any rules, guidelines or practices.[291] Each of the health regulatory colleges most affected (physician, nurses and pharmacists) has disseminated related policies to guide their members.[292] The MOHLTC is also making various informational services and template forms available for ease of access.[293] Other groups are also helping develop materials. For instance, the Joint Centre for Bioethics at the University of Toronto created a MAID Policy Template. The Template assists Ontario health institutions as an aid to local planning and seeks to operationalize the ethical principles of accountability, collaboration, dignity, equity, respect, transparency, fidelity and compassion.[294]

On the question of conscientious objections, the College of Physicians and Surgeons has affirmed that physicians must not abandon patients who have requested medical assistance in dying: an effective referral must be made in a timely manner. Similarly, the College of Nurses of Ontario has stated that nurses who conscientiously object must transfer the care of a client who has made a request for medical assistance in dying to another nurse or health care provider who will address the client’s needs. MOHLTC has established a telephone Clinician Referral Service to support physicians and nurses who conscientiously object to fulfil this obligation.[295] The MOHTLC also recently committed to establishing a “care coordination service” to asssit patients and caregivers in accessing additional information and services for MAID and other end-of-life options, with further information to follow in early 2017.[296] As for institutions, the MOHLTC has asked that objecting institutions make their policy known to members of the public. But, at the time of writing, the ministry was still investigating how conscientious objections might work in long-term care homes, which are required by law to provide end of life care.

In addition to these non-legislative measures, on December 7, 2016, the government of Ontario introduced Bill 84, the Medical Assistance in Dying Statute Law Amendment Act, 2016.[297] Bill 84 aligns with the federal MAID legislation (Bill C-14), and if passed, would address areas relevant to MAID that fall under provincial jurisdiction. This includes proposed amendments to six existing statutes in order to provide clarity in relation to MAID in Ontario:

• the Coroners Act and the Vital Statistics Act, mandating that the physician or nurse practitioner who provided the medical assistance in dying shall give notice of the death to a coroner, and clarifying that the Coroner does not need to sign the medical certificate of death for MAID deaths unless the Coroner investigates the death
• the Excellent Care for All Act, clarifying that MAID may not be used as a reason to deny a payout on insurance or other benefits, and providing immunity from proceedings for damages to physicians, nurse practitioners, and any other persons assisting them in the lawful performance of MAID
• the Freedom of Information and Protection of Privacy Act and the Municipal Freedom of Information and Protection of Privacy Act, to protect the identities of clinicians and institutions that provide MAID from being disclosed pursuant to an FOI request
• the Workplace Safety and Insurance Act, ensuring that a claim made under the WSIA where the worker received MAID would be determined based on the illness or disease for which the worker was determined to be eligible to receive MAID and not another cause of death.

How the LCO’s consultation process will address Ontario’s rapidly evolving legal regulatory scheme for MAID is outlined in sub-section 3, “Issues for the LCO’s Project,” below.

2.      Areas of continued debate

The LCO is aware that there are several points of contention on the state of the law that continue to be debated. The most visible areas of debate include the following:

• Whether advance requests will be permitted.
• Whether persons with medical conditions will be eligible if their death is not reasonably foreseeable (e.g., persons with disability and mental illness who are not dying).
• What the referral process should be for conscientiously objecting individual and institutional providers.
• Whether enhanced safeguards will be put in place to protect persons who may be incapable, suffer from suicide ideation or otherwise vulnerable to the undue influence of others.

There are several sources of information that put these points of contention into context.

First, following the Carter decision, but prior to federal legislation, a number of expert reports were commissioned and delivered at the federal and provincial levels over the course of 2015 and 2016.[298] These reports made various – sometimes congruent, sometimes conflicting – findings on regulating medical assistance in dying. Specific topics addressed in these reports include advance requests, conscientious objection and eligibility criteria. Debates surrounding conscientious objection have also been taken up in the expert academic literature. Legal professionals are actively considering the constitutional ramifications of balancing freedom of religion and conscience with patients’ equitable access to care.[299]

Another source for these continued debates is Parliament itself. During Parliament’s consideration of Bill C-14, the Senate made or suggested amendments to the Bill that would permit broader eligibility criteria for medical assistance in dying as well as advance requests. Legislative debates among parliamentarians were highly divisive and publicized in the media. [300]

Additionally, there is also a small body of case law that provides information on these issues. During an interim period before federal legislation was passed, persons were permitted to apply to a superior court to exercise their constitutional rights to medical assistance in dying.[301] This court process was used in at least 7 cases in Ontario and the results are not entirely consistent with legal frameworks that have emerged since. For instance, based on the Carter decision, the Ontario Superior Court of Justice found that persons need not have a terminal or life-threatening illness.[302]

Last, the LCO is aware there has been considerable advocacy within the disability community to alter standards for consent through the implementation of “vulnerability assessments” along the course of the service pathway. Notably, the Canadian Association of Community Living (CACL) published a report claiming that certain groups are vulnerable to making requests that are not “well-reasoned” due to risk factors, such as stigma, inducement and coercion, social isolation, chronic mental illness and suicidal ideation.[303] A notable concern of advocates, such as CACL, is that a spectrum of alternative supports be improved to mitigate the desire for medical assistance in dying – from palliative care to mental health supports and secure housing.

At the core of most areas of debate, listed above, are fundamental tensions, namely between rights to equality in access for all persons who are suffering intolerably, on the one hand, and a concern for safeguarding persons who may be vulnerable to involuntary requests, on the other. The concern for safeguards extends not only to people who are capable and vulnerable due to their social circumstances, but also to those who become incapable having bound themselves in the past through an advance request. While some argue that advance requests should be available in the event of capacity, others believe that individuals cannot predict future wishes accurately enough to bind themselves to a fatal decision.

The LCO is aware that there are several ongoing or intended Charter challenges to the new legislation as well as to regulatory college guidelines on the referral process for objecting clinicians.

3.      Issues for the LCO’s project

In chapter 1 of this discussion paper, we explained that the LCO has sought to avoid duplication with ongoing government efforts in this project in the area of medical assistance in dying (see ch. 1.C, “The project scope incorporates ongoing developments”).

The actions taken, initiatives proposed, and measures introduced by the federal and provincial governments in December 2016, as outlined above, indicate the kind and scope of issues which will be subject to government regulation, the legislative process, and continued government leadership in 2017 and likely even into 2018. This greatly clarifies which issues the LCO should address in this project as complimentary to or beyond the scope of these government initiatives. Outside this scope of proposed legislation, the LCO has heard about several additional issues related to MAID. These include questions related to:

• transitions between care settings to receive MAID
• conscientious objection to the provision of MAID services in long-term care
• appeals of capacity determinations for persons requesting MAID, and
• policies and practices that could be put in place to preempt or resolve disputes arising from the above.

F.     Resolving Health Care Disputes

Death, dying and bereavement are highly emotional and important experiences for everyone involved – patients, family, friends and health care providers, alike. It is not surprising then that disputes arise in these circumstances and, when they do, that disputes can have serious repercussions on everyone’s well-being.

There are several avenues of recourse to resolve conflicts in Ontario. In this section, we briefly summarize administrative law procedures that have been put in place to deal with disputes in a streamlined fashion in the health care system.

As explained below, the LCO’s project considers whether additional policies and practices could be introduced to either preempt or resolve disputes prior to engaging these existing processes.

1.      Disputes regarding decision-making

The Consent and Capacity Board was established as an independent, expert administrative tribunal with jurisdiction over issues raised by the HCCA (along with issues under statutes, such as the SDA and MHA).[304] The CCB may hear applications relevant to this project that seek to,

• review a health care provider’s finding that a patient is incapable of making treatment decisions[305]
• appoint a decision-making representative to make decisions about health care treatment[306]
• obtain permission for an SDM to depart from the prior capable wishes of a person who lacks capacity[307]
• determine whether an SDM is acting in compliance with the requirements of the HCCA as to how decisions must be made[308]
• receive directions to clarify the HCCA’s application with respect to a decision.[309]

In practice, the majority of applications that the CCB addresses are challenges to capacity determinations with respect to treatment under the HCCA, and to findings that an individual should be admitted or remain at a psychiatric facility on an involuntary basis under the MHA.[310]

Nonetheless, reported CCB decisions demonstrate that it does also hear applications concerning treatment decisions at the end-of-life.

A study of CCB decisions concerning the determination of a patient’s best interests in end-of-life situations identified a number of prominent themes.[311] In such cases, health care providers typically suggested that life-sustaining treatments be withdrawn, while the patient’s SDM disagreed.[312] Among other findings, the study emphasized, “SDMs frequently relied on their own values and religious beliefs in their interpretations of best interest, and that [providers] focused primarily on clinical condition of the patient”.[313]

For the LCO, findings about the substance of CCB decisions offer a reliable way to understand the types of disputes taking place in Ontario, and we refer to them throughout the discussion paper.

Different individuals can initiate the CCB review process depending on the type of application. For instance, a health care provider can apply to determine whether an SDM has complied with the rules for decision-making under the HCCA, if he believes the SDM has not.[314] Health care providers and SDMs can also apply to the CCB for directions about an incapable person’s treatment decisions.[315]

The CCB has broad remedial powers, based on the application at hand, which may include affirming an SDM’s decision, appointing a representative to make a treatment decision under the HCCA or substituting a different decision about an incapable person’s treatment.[316] In the area of end-of-life treatment decisions, the CCB has made a variety of findings on what decisions would be in a patient’s best interests, taking into account the HCCA’s requirements for decision-making on an incapable person’s behalf and the facts of the case.[317] (Further discussion of decision making over life-sustaining practices is found in section 6.C).

The CCB prioritizes expeditious resolutions: hearings must commence within seven days of an application and decisions must be rendered within one day of the conclusion of the hearing.[318] Decisions of the CCB may be appealed to the Superior Court of Justice.[319]

2.      Disputes regarding the quality of services and supports

Disputes about the quality of care provided in the last stages of life routinely arise in two main circumstances. First, patients or their supporters may allege that they received substandard services in terms of quality (i.e., improper treatments, lack of communication). Second, individuals applying for government-funded services that are administered at home or in the community through the CCACs may appeal a refusal to provide them with the level or type of services they requested.

Until recently, two administrative tribunals were the avenues of recourse in these situations, the Health Professions Appeal and Review Board and the Health Services Appeal and Review Board. However, the Ontario government has also established a Patient Ombudsman who is intended to “help meet the needs of patients who have not had their concerns resolved through existing complaint mechanisms”.[320] We discuss these in turn below.

i. Regulatory college complaints and the Health Boards

Under the Regulated Health Professions Act, 1991, regulatory colleges are required to maintain complaints procedures for members of the public who allege they received substandard care.[321] For instance, the College of Nurses of Ontario explains that its complaints procedure is designed to address concerns including the failure to provide adequate care, inadequate documentation and unsafe medication administration.[322]

Complaints to the regulated colleges are reviewed by specialized committees and may involve a combination of alternative dispute resolution, investigations and hearings.[323] These processes may result in a variety of remedies if the complainant is successful, such as a caution, discipline or an order to undertake actions.

If the complainant or health care provider wishes to dispute the resolution of a complaint, they can apply to HPARB. HPARB has a mandate to review health college committee decisions on a number of grounds. It also has powers to confirm the decision, refer the matter back, make recommendations, or require the committee to do things within its jurisdiction, such as requiring the health care provider to take remedial action.[324] Decisions of HPARB may be appealed to the Superior Court of Justice.[325]

HSARB plays a similar role as an administrative tribunal; however, its mandate involves reviewing determinations made by agencies acting under 12 different statutes (that do not include the regulated health colleges).[326] In terms of matters relevant to this project, HSARB reviews decisions of approved agencies under the Home Care and Community Services Act, 1994 regarding eligibility for and the amount of community services (such as the CCACs). It also adjudicates appeals of OHIP decisions respecting eligibility for coverage and payment for services under the Health Insurance Act.[327] HSARB’s authority depends on the legislation under which it is operating.

Both HPARB and HSARB are regulated under the Ministry of Health and Long-Term Care Appeal and Review Boards Act, 1998, and respective Rules of Practice and Practice Directions.[328]

As with the Consent and Capacity Board, the health boards provide insights into the types of disputes arising in the last stages of life. HPARB, in particular, has heard a significant number of cases relating to palliative and end-of-life care.[329] Complaints in those cases relate to delays in providing palliative care, failures to consult family members about transferring a patient to palliative care, and failures to communicate the risks of harm associated with treatments.[330]

One of the areas of high dispute also occurs when health providers allegedly issue “Do-Not-Resuscitate” (DNR) orders without obtaining informed consent from a patient or SDM.[331] Considering that this issue could be dealt with as a matter of capacity and decision-making law, there appears to be some overlap in the cases that individuals bring to the CCB and the health boards (by way of the regulatory college complaints procedures).

Compared to the CCB time frames, proceedings at the health boards can be somewhat longer. HSARB must hold a hearing respecting home and community services within 30 days after the appeals process begins and must make a decision within 3 days of the hearing.[332] More generally, the health boards resolve over 80 per cent of cases in less than one year.[333] In the LCO’s capacity and decision-making project, we did hear from stakeholders, however, that complaints procedures within the regulatory colleges can be time consuming, and those procedures must conclude prior HPARB’s review.[334]

In either case – the CCB or the health boards – the LCO has also been told that appeals to the Superior Court of Justice can be costly, difficult to understand and last for extended periods. Therefore, the time between bringing and finally resolving a dispute can unpredictable.

ii. Patient Ombudsman

The Patient Ombudsman is a recent addition to Ontario’s health care system and there is little information currently available to understand its role and effectiveness. The Patient Ombudsman was formally established through a 2014 Bill amending the Excellent Care for All Act, 2010.[335] The position was filled and publicly announced in December 2015.[336]

At a general level, the provincial government’s action plan for the health system, Patients First: Action Plan for Health Care, explains that the Patient Ombudsman will “help people who have an unresolved complaint about their care at a hospital, long-term care home or Community Care Access Centre”.[337] Under the Act, a “patient” is defined to include patients of hospitals, residents of long-term care homes and clients of the CCACs as well as the substitute decision-makers for any of those individuals if they are incapable with respect to treatment or another matter.[338]

The Patient Ombudsman’s powers and responsibilities include,

• responding to complaints from patients and caregivers about the patient’s health care experience at a health sector organization, which includes hospitals, long-term care homes or CCACs
• investigating a health sector organization in response to the complaint or on her own initiative
• making recommendations to a health sector organization that is the subject of an investigation
• making reports to the MOHLTC on her activities and annual recommendations, and providing reports to LHINs as appropriate.[339]

The Act explains that, following a complaint, the Patient Ombudsman will work with the complainant, the health care organization and, potentially, the relevant LHIN to facilitate a resolution. After attempting to facilitate a resolution, the Patient Ombudsman can also conduct an investigation of the complaint, which could result in recommendations to the health care organization.[340]

However, the Patient Ombudsman might not respond to all complaints. Should she determine that the complaint relates to a matter falling within the jurisdiction of another body, she can refer the complaint to that other body.[341] The Government of Ontario’s public announcement of the first Patient Ombudsman also characterizes her role as responding to “unresolved” complaints.[342] As a result, it is not clear at this time what formal and informal avenues of recourse patients and caregivers will be required to access before engaging the Patient Ombudsman, including the CCB, regulatory colleges and health boards.

3.      Issues for the LCO’s project

More than any concerns about existing avenues of recourse, during the LCO’s consultations we heard when it comes to disputes in the last stage of life, there is a need for alternative dispute resolution (ADR) mechanisms that can be accessed prior to initiating administrative procedures.

Expediency and usability are critical assets for dispute resolution processes in this area of the law, especially when end-of-life decisions and services are at stake.

Stakeholders told us that the majority of disputes are actually resolved in a person’s care setting through good communication practices between health care providers, patients and SDMs. Health facilities, such as hospitals, may also have internal policies and procedures to resolve escalations in conflict that bring in third parties, including ethicists, chaplains and legal counsel. These procedures can offer a low-cost and non-adversarial means of resolving issues.

However, the LCO is aware that there are various critiques of these existing processes, and we were asked to investigate other possibilities for ADR to standardize, simplify and increase access to conflict management (see chapter 7.B).

It is possible that the Patient Ombudsman might provide a means to fill the gap between informal complaints to health care facilities and administrative procedures. The LCO will keep updated on progress respecting the Patient Ombudsman’s mandate and implementation, and address related issues in this project.

We also note here that, aside from our review of ADR, this discussion paper does also review topics that could minimize disagreements by getting to their source, such as clarifying the law surrounding the withdrawal and withholding of treatment (see chapter 6.B), and accommodations and supports for faith and cultural communities (see chapter 6.G).

• Please also note that the LCO’s capacity and decision-making project made recommendations concerning the CCB and the increased use of mediation, and we will rely on our work in that project here.

G.    Specific Laws Affecting Care in the Last Stages of Life

The LCO’s project examines specific laws, policies and programs in Ontario that intersect with but are separate from the regulatory framework for the health care system. Although we address these in detail in the following chapters, a few examples are provided here.

An example of a law affecting care in the last stages of life that the project examines is the Employment Standards Act, 2000. Previously, we mentioned that caregivers are eligible for services and supports in the health care system through the CCACs and community support services, such as respite care and counselling, if they are available. In addition, the Employment Standards Act, 2000 permits caregivers and other family members to take protected leave from work for stipulated periods of times.[343] Under these provisions, individuals are entitled to take time to care for others without losing their employment. The LCO’s project considers whether the Act’s entitlements, coupled with other benefits, are sufficient to give caregivers and family members the supports they need (chapter 5.D.1).

Health care providers are also protected from work-related concerns under the Occupational Health and Safety Act.[344] Presently, these protections are fairly limited to particular types of hazards in the workplace, such as unsafe physical environments and harassment.[345] However, providing for the mental health of workers is a developing area.[346] Protections from the mental health effects of high-risk jobs are actively being considered by the Ontario government.[347] The LCO’s project considers whether health care providers who work regularly with patients and their supporters could benefit from a similar expansion of occupational health and safety legislation to address the emotional repercussions of their work situation (chapter 6.F).

A final example of a distinctive law that the LCO reviews is the Vital Statistics Act.[348] There are many determinants that affect a person’s place of death. One potential contributor of a legal nature is the efficacy of procedures to certify that a person has died of expected causes in the home. Funeral services routinely require receipt of a medical certificate of death before they will agree to transport the body of a person who has died away from the home. However, there are frequent administrative complications and delays that arise in this process that may cause suffering for grieving families. As a result, the LCO was informed that the Vital Statistics Act, which regulates associated issues, could need to be refined (chapter 6.E).

• Ontario has proposed amendments to six existing statutes in order to provide clarity specifically in relation to MAID, including the Vital Statistics Act. See the discussion above at section 4.E.1.

Lastly, it is also worth recalling that this paper considers laws that cut across sectors, such as the Charter, Human Rights Code and Regulated Health Professions Act, 1991 (which we introduced in chapter 3, above).

H.    List of Statutes the LCO’s Project Considers

The remaining chapters of the discussion paper analyze issues to be addressed in the project. For a comprehensive list of these issues, we invite you to refer to the Table of Contents.

Below, you will find a list of statutes that we review to a greater or lesser extent, depending on the issues being addressed:

1. Accessibility for Ontarians with Disabilities Act
2. Canadian Charter of Rights and Freedoms
3. Cancer Act
4. Constitution Act, 1867
5. Constitution Act, 1982
6. Coroners Act
7. Employment Standards Act, 2000
8. Excellent Care for All Act, 2010
9. Home Care and Community Services Act, 1994
10. Health Care Consent Act, 1996
11. Human Rights Code
12. Law Society Act
13. Local Health System Integration Act, 2006
14. Long-Term Care Homes Act, 2007
15. Occupational Health and Safety Act
16. Regulated Health Professions Act, 1991
17. Retirement Homes Act, 2010
18. Substitute Decisions Act, 1992
19. Vital Statistics Act

I.       Questions for Discussion

4. Legislation governing health care, housing, employment, professions, and other areas intersects with the last stages of life – what gaps exist that would benefit from greater certainty or clarity?

5. Should a public health approach to palliative care be integrated into Ontario’s regulatory framework, and how would it look on the ground?

6. The LCO has identified several areas where medical assistance in dying could be clarified, including transitions in care, conscientious objection, and appeals of capacity determinations. Are there other additional issues to consider?