A. Demographic Changes and Evolving Values about Death and Dying in Ontario
The way we treat death and dying shifts over time in response to demographic changes (such as life expectancy, ethnic and cultural diversity and aggregate population size) as well as to evolving values (about quality of life and ethics, for instance). In recent years, the provision of care in the last stages of life has garnered considerable attention due to several intersecting social developments that are drastically intensifying the demand for care. These include Ontario’s aging population, advances in medical innovation that may prolong life and changing values about the location, timing and general circumstances of our deaths.[21]
The number of individuals transitioning through the last stages of life in Ontario is expected to increase in the coming years. This is due in part to increased life expectancy. The average life expectancy of Canadians has improved since the early 20th century by an astounding 24.6 years.[22] By 2011, Canadians lived an average of about 82 years with the most common age at death being 85.[23] Moreover, the proportion of elderly persons is increasing. Although individuals born in the early part of the “baby boom” are still relatively young (they are only entering into their 70th year at present), the proportion of elderly Ontarians will grow over the next few decades as this generation continues to age.[24]
Therefore, more Ontarians are living longer; however, we are living longer with chronic illness and complex needs that require dedicated care.[25] Exactly what that care looks like and how it is delivered have also experienced a shift over the past century. Whereas the emergence of new medical innovations in the mid-20th century has been correlated with a preference for curative, sometimes aggressive treatment, the LCO was informed that Ontarians are reembracing death as a natural and social phenomenon, not only a medical one. For instance, there is an emerging preference among Ontarians to die at home.[26] Moreover, a large majority of hospitalized Canadian elderly have reported wishes for comfort measures nearing the end of life, rather than traditional life-prolonging treatment.[27]
Meanwhile, palliative care is an established model for comprehensive, person-centred care that aims to relieve suffering and generate “meaningful improvements in quality of life and mood”, and effectively prolong life as well.[28] In fact, less aggressive care that focusses more on comfort does not necessarily adversely affect duration of life. Rather, patients receiving early palliative care have had improved survival compared to those receiving standard care alone.[29] Stakeholders told the LCO about evolving values and experiences that support such data, which speaks to the commonality of preferences that prioritize quality of life over intrusive treatment nearing the end of life.
Finally, Ontario’s increasing diversity could have a tremendous effect on death and dying in the province. Higher levels of immigration since the end of the 1980s mean that older Canadians are becoming more ethnically and culturally diverse: among the cohort of persons turning 65 in the 2030s, at least 1 in 3 people could be born outside Canada.[30] The recognition of various equality-seeking groups under human rights regimes – including and beyond ethnocultural communities – could also influence the delivery of care in future.
Insofar as beliefs and practices surrounding the dying process can be quite different across faith, cultural, age, gender and other equality-seeking groups, Ontario’s system will be called upon to proffer an array of services that enable individuals and communities to exercise nuanced choices. Respecting Ontario’s diversity is of the utmost importance to the LCO and is an integral part of this project.
B. Recent Debates about Rights Nearing the End of Life
Ontario is not alone among jurisdictions grappling with an increasing demand for care in the last stages of life. The Canadian federal government and other provinces and territories are moving to address similar challenges, as are foreign jurisdictions around the world. Therefore, policy debates on related issues are taking place at all levels of governance from the international to the local. In this section, we briefly introduce readers to prominent global debates about rights nearing the end of life before turning to our in-depth review of Ontario`s approach to specific issues further in the paper.
The first area that merits discussion is medical assistance in dying (MAID) because it has recently attracted an overwhelming amount of public debate. Individuals and organizations have asserted the right to receive medical assistance in dying in various forums for decades and, in 2016, Canada joined a handful of countries that allow the practice in certain circumstances. Medical assistance in dying is premised on principles of human dignity and the rights of individuals to determine their own manner of death when a medical condition causes them to suffer intolerably.[31]
However, the eligibility criteria and procedures for medical assistance in dying differ by jurisdiction. In some countries it is available to persons who suffer intolerably, but who are not dying (such as persons with disability and mental illness);[32] whereas in Canada and elsewhere, the practice is characterized as an avenue of last resort for persons whose death is reasonably foreseeable.[33] Furthermore, in contrast to some countries, in Canada adults must be capable of requesting medical assistance in dying at the time of receipt.[34] The Canadian government has undertaken to study extended eligibility criteria, including for persons with disability and mental illness who are not dying, and for those who wish to make a request in anticipation of future incapacity.[35] (For more information see section 4.E., “medical assistance in dying”).
Medical assistance in dying raises a variety of concerns, such as reconciling the interests of objecting service providers and patients seeking access, assessing capacity to request assistance and ensuring safeguards against abuse.
The heightened attention awarded to medical assistance in dying has also raised concerns about the persisting need for improved health care that successfully alleviates suffering for many individuals.[36] Stakeholders have expressed apprehensions about medical assistance in dying detracting from efforts that are in progress to reinforce established forms of care, while others claim it creates an opportunity for frank dialogue to be leveraged. For our part, the LCO agrees with statements made in expert reports that medical-assistance in dying must be “part of a continuum of services and supports for Canadians at the end-of-life”.[37] In our opinion, medical assistance in dying should not, however, diminish the consideration of issues affecting persons who are dying and their supporters, such as better palliative care.
Palliative care has achieved widespread acceptance as the primary model of care for persons who are dying and their caregivers, family and friends.[38] Palliative care has philosophical and clinical dimensions. As a philosophy of care, palliative care strives to help individuals, families and caregivers address physical, psychological, social, spiritual and practical issues from the point of diagnosis of a life limiting illness, through the dying process, and into bereavement. It emphasizes quality of life, “reinforces the person’s autonomy and right to be actively involved in his or her own care, and strives to give individuals and families a greater sense of control”.[39]
Palliative care includes helping to prepare for and manage choices, cope with loss and grief, treat active issues, prevent new issues from occurring, and experience personal self-actualization.[40] In the health care system, persons who are eligible for palliative care may receive treatments and accompaniments that reflect the philosophy of palliative care. Treatments and accompaniments may be delivered in teams that include specialists, registered nurses and nurse practitioners, social workers, family physicians, psychologists, personal support workers (PSWs) and hospice volunteers.[41]
It is important to understand that palliative care is separate from medical assistance in dying. A request for medical assistance in dying does not, and should not, affect access to palliative (or any other) care, and palliative care may be provided right up until the time of death.
Unfortunately, the LCO has learned that there are significant challenges with “knowledge translation”[42] in the area of palliative care – which is to say that there are difficulties disseminating and applying knowledge about providing palliative care in the health care system.
In addition, closely connected to palliative and other forms of social care are very sensitive debates occurring on the right to decide whether a person will receive life-saving or life-sustaining treatments, such as feeding tubes and artificial ventilation. Critical questions being asked in these situations include who has legal authority to decide the withholding or withdrawal of treatment when a patient has lost the capacity to decide – substitute decision-makers or physicians – and on what criteria? Law reform agencies and regulatory colleges around the world have reviewed associated laws in their jurisdictions and the LCO has been asked to do so in this project.[43]
It should be apparent from our discussion so far that capacity and decision-making laws are inseparable from policy debates about rights nearing the end of life. Informed consent, advance care planning and substitute decision-making are regulated under standalone legislation (in Ontario, the SDA and HCCA); nevertheless, they are essential aspects of palliative care and the withholding and withdrawal of treatment, among other practices.
Notably, the widespread use of ad hoc practice tools to record patients’ wishes, values and beliefs for common end-of-life treatments has faced serious critique.[44] The LCO heard that, in Ontario, “Do-Not-Resuscitate”, “levels of care” and other such forms are inconsistent across care settings, often misstate the law and are disregarded by some health care providers. On the other hand, we were asked to explore whether the design of new practice tools could promote meaningful decision-making consistent with the law, such as template forms to obtain consent to treatment.
A final major subject of debate that each of the above areas must confront is equitable access to care.[45] The quality of care in the last stages of life can vary based on factors such as place of residence, ethnic and cultural background, income level, LGBTQ identity and medical diagnosis.[46] In the previous section, we mentioned research showing that many individuals would prefer to die at home and jurisdictions have prioritized improvements to home and community care in recent years.[47] However, the majority of Canadians still die in hospital.[48]
Given the immense significance of death and dying for everyone and Ontario’s increasing diversity, promoting equality is a pressing objective for this project.
C. Affected Individuals, Communities and Institutions
The issues raised in the LCO’s project affect all Ontarians because each of us dies and is affected by the deaths of those around us. The LCO recognizes the advantages of a person-centred approach to caring for individuals moving through the last stages of life and their supporters. In addition, we accept that individuals belong to community networks that may share a sense of identity, discourse and experience that the LCO must take into account.
In addition to individuals and communities, the LCO’s project concerns those who shape and implement that law as professionals, government and delegated agencies. Our project strives to understand the difficulties they encounter in providing services and supports to persons who are directly affected.
In this section, we provide contextual background information on these interest groups.
1. Persons in the last stages of life
In the introduction to this paper, we explained the LCO’s inclusive approach to defining the experience of persons who are approaching the end of their life as a result of terminal illness, chronic disease or serious frailty. These conditions have different trajectories that vary in terms of their symptoms, predictability and response measures. They could deteriorate quickly or over an extended period of years. Moreover, they may unevenly affect different populations.
From the LCO’s perspective, the law must be able to reflect common goals regarding the care that persons who are dying receive, while remaining sufficiently flexible to capture their personal experiences. As a result, any potential measures to change the law must be informed by the full range of conditions that Ontarians experience and how those conditions interact with their livelihoods, care settings and access to adequate care.
Persons with cancer receive the most publicly funded services for palliative care in Ontario.[49] Cancer is the leading cause of death in Canada.[50] Almost half of Canadians will develop cancer in their lifetime and about 1 in 4 persons will die of cancer.[51] The large majority of persons who develop cancer are over age 50 (89%). However, cancer can occur throughout the life course and it has been the leading cause of disease-related death in children under age 15.[52] Despite progress in treating cancer, the Canadian Cancer Society predicts, “there will be an increasing number of cancers related to the growing and aging population”.[53] It goes without saying that cancer imposes emotional, financial and other costs on individuals and their supporters, and it also “has major economic ramifications on Canadian society at large”.[54]
Although cancer is the leading single cause of death, at least the same proportion of Canadians die from just a few other chronic conditions, and there has been considerable public acknowledgement of the need to better serve these individuals.[55] For instance, circulatory and respiratory diseases (e.g., heart disease, stroke, and chronic obstructive pulmonary disease) together are the cause of approximately 29.8% of deaths in Canada (see Figure 1).[56]
There are also illnesses that are admittedly less prevalent, but that also deeply affect a significant number of Ontarians who are deserving of equal treatment under the law. By way of example, there are an estimated 27,000 Ontarians living with HIV and 1000 new diagnoses each year.[57] HIV disproportionately affects men who have sex with men, African and Caribbean Ontarians, persons who use injection drugs, Indigenous peoples as well as women among or interacting with those groups.[58] Some of these individuals “struggle with low incomes, unemployment, depression, substance use, cognitive impairments, and stigma”.[59] Long-term planning remains a concern. The onset on HIV-associated neurocognitive disorders (HAND) is younger than those with Alzheimer’s disease. The prevalence of milder forms of HAND is high at 50-60%, and 2-3% for more severe forms.[60] Prevalence also does not necessarily equate to awareness; the disorder comes as a surprise for many and can trigger concerns for financial planning, the availability of HIV-designated services, or other ways of addressing vulnerabilities arising from intersecting stigma related to dementia, HIV diagnosis, and LGBTQ status.
Multiple sclerosis, amyotrophic lateral sclerosis (ALS), kidney disease and Alzheimer’s disease are further examples of progressive illnesses that could develop slowly and affect fewer people, but do eventually result in death and do merit access to high quality, personalized care. Alzheimer’s disease is the particular focus of many community organizations as its incidence is rising with Ontario’s shifting demographics toward a higher proportion of older adults.[61] Among deaths due to chronic conditions in Canada, Alzheimer’s underwent the largest growth from 2000 to 2009 (25.4%).[62]
Alzheimer’s disease is the most common form of dementia. It poses special challenges along the illness trajectory because it is a “progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to affect social or occupational functioning”.[63] Thoughtful and legitimate advance care planning has thus been identified in our project as an important area of the law for this community of Ontarians.
About 90% of persons diagnosed with dementia transition from living in the community to long-term care before their death.[64] The relationship between dementia and long-term care demonstrates the firm connection between medical condition and the location where individuals find themselves placed within Ontario’s system. Moreover, the LCO learned that certain care settings are more or less equipped to provide dedicated care for persons who are dying, leading to disparities in access based on medical condition.
Yet individuals’ experiences with death and dying are influenced not only by their medical condition, but also factors including their access to information, place of residence and informal supports, which may determine whether they can or cannot access suitable treatments and accompaniments. Therefore, as much as possible, in this paper we try to highlight connections between social factors, access to care and the role of legal frameworks.
We hope to learn more about these connections in our consultations.
2. Caregivers and other family and friends
Whether the law hinders or nurtures caregivers greatly affects their ability to support persons who are dying and, also, the caregivers’ own wellbeing.
At some point in life, most Ontarians act as a caregiver to a family member or friend.[65] Up to 75% of care in Canada is provided voluntarily by unpaid individuals and 97% of patients receiving home care in Ontario get assistance from a caregiver.[66] With Ontario’s aging population and a “continuing shift away from institutional, hospital-based forms of care toward more home and community-based care”,[67] caregivers occupy an integral role in the health system that is becoming still more vital.[68]
Age-related needs are the single most common problem requiring help in Canada, but an equal proportion of persons receive assistance to manage chronic diseases, and over one quarter (28%) of caregivers have supported a person through terminal illness.[69] In Ontario, specifically, Health Quality Ontario (HQO) estimates that recently 35,000 persons a year acted as end-of-life caregivers in a private home or long-term care facility.[70]
At the end of life, as an individual’s condition deteriorates, there is an “increasing need for assistance with daily tasks”.[71] As such, persons at the end of life and their caregivers struggle with the implications of advanced medical conditions, which include symptoms as well as practical demands. Caregivers lend their support through a great variety of activities that include emotional comfort, grocery shopping, cleaning, providing transportation, coordinating appointments, managing medications and helping with hygiene.[72]
Caregivers told the LCO that the time and effort required by such daily tasks can be incredibly difficult to manage without supports (such as paid benefits and respite) and that Ontario’s existing law and policy framework is wanting in this respect.
Thus, there are positive aspects as well as challenges arising from caregiving in the province. Research on caregivers’ perspectives has found that most of them assume the role because they wish to do so.[73] Many find meaning in it and they experience feelings of reciprocity in their relationships with those whom they care for.[74] As the Change Foundation reports, “Caregiving can bring incredible joy, rewarding relationships, personal satisfaction and depth to the human experience; it can be enriching and life defining”.[75]
Nevertheless, it is essential to acknowledge that caregivers often function in worrying conditions. In a report on supports for end-of-life caregivers, HQO found that
Providing informal care for people at the end of life can be burdensome, and studies have shown that it can have negative health impacts for the caregivers, such as sleep problems, fatigue, psychological distress (i.e., depression and anxiety), burnout, and an increased risk of mortality. Studies have also shown that informal caregivers tend to suffer from financial strain. Furthermore, it is important to recognize that more people are now working outside the home, which may further add to the burden of informal caregiving.[76]
This discussion paper examines the adequacy of existing supports in Ontario that are intended to relieve difficulties, such as those listed above.
Additionally, we consider the needs of family and friends who may not be caregivers but who are, nonetheless, touched when someone close to them passes away. As with caregivers, family and friends are important stakeholders in the LCO’s project because they are bereaved. They may also assume responsibility over practical issues that must be dealt with after a person has died, such as obtaining a death certificate and arranging funeral services. Consequently, part of the LCO’s task is to review the current state of benefits that family and friends receive (e.g., leave from work, counselling) and related challenges.
- Detailed information on existing services and supports for caregivers, family and friends and on the challenges they face is found in chapter 5.D.1.
3. Professionals
There is a wide range of professionals who provide services and supports in this area including the following:
Health care providers: Health care providers in this context include family physicians, medical specialists, registered nurses and nurse practitioners, social workers, personal support workers, pharmacists, psychologists and psychiatrists. Health care providers work in a variety of environments, are regulated separately and may be funded under different arrangements. However, palliative care emphasizes coordinating services in interprofessional teams and capacity building among providers so that not only specialists but also primary level providers can address patients’ basic needs. Health care providers are the frontline workers who interact most closely with persons who are dying and their supporters.
Legal professionals: Legal professionals with an interest in this project include legal clinics, such as the Advocacy Centre for the Elderly (ACE) and ARCH Disability Law Centre, and members of the health, and trusts and estates bars. Besides legal professionals who have specialized expertise in this area, general practitioners are called upon to assist in related matters, for example, drafting powers of attorney, estates planning and legal representation in disputes.
Ethicists: Ethicists develop and apply analytical frameworks to resolve controversial questions that engage medical, legal, philosophical, ethical and other viewpoints. Ethicists practicing in this area work with facilities, government and delegated agencies and research institutions to conduct studies, craft policies and mediate case-based decision-making.
Facility operators: Facilities are hospitals, long-term care homes, residential hospices, community clinics and other institutions that oversee service delivery within their authority. For instance, some hospitals have palliative care units and palliative consult teams, and long-term care homes are statutorily required to provide end-of-life care.[77]
Academics, educators and trainers: The LCO heard there is a high level of concern about the lack of education and training for professionals who regularly encounter persons in the last stages in life. Furthermore, there is a lack of information for members of the public on relevant topics, such as eligibility for services and consent to treatment. As such, it is essential to include regulatory colleges, professional associations, and academics in law and the health sciences in the LCO’s project. Beyond education and training, academics also contribute greatly to the availability of trustworthy research.
4. Government and delegated agencies
Core government and delegated agencies described below are also presented in a flowchart in section 4.B.2, Figure 2, Ontario’s Framework for Publicly Funded Care in the Last Stages of Life.
Government: Overall responsibility for health care in Ontario rests with the MOHLTC. The MOHLTC sets priorities for the sector as a whole and has a stewardship role that focuses on strategic planning, policy development, investment, system-wide performance and accountability.[78] The MOHLTC directly plans, funds and oversees certain services while delegating the majority of funding and administration to external agencies, such as the Local Health Integration Networks (LHINs) and Cancer Care Ontario (CCO). For instance, the MOHLTC funds residential hospices and physicians and is leading the development of a strategy on palliative and end-of-life care.[79] Apart from the MOHLTC, the issues raised in this project cut across government ministries and departments, for instance, MAG, the Ministry of Community and Social Services, Ministry of Children and Youth, Office of the Public Guardian and Trustee, Ontario Seniors’ Secretariat and Office of the Chief Coroner.
Ontario Palliative Care Network: The OPCN is a partnership of community stakeholders, such as health providers, HQO, the LHINs, CCO, health system planners, patients and their families. The OPCN is mandated to be a principle advisor to the government on hospice palliative care in Ontario. It is accountable for quality improvement initiatives, data and performance measurement and system level coordination along with supportive regional implementation of high-quality, high-value hospice palliative care in Ontario.
Local Health Integration Networks: Ontario’s 14 LHINs are Crown agencies that plan, fund and oversee the accountability of far-reaching health services in the province, including hospitals, long-term care homes and community support services. Under Bill 41, Patients First Act, 2016, which received royal assent December 8, 2016,[80] the LHINs are proposed to assume greater responsibly for primary care, long-term care placement coordination, and home and community care (the latter two have otherwise been the responsibility of the Community Care Access Centres (CCACs)). Home care is intended for those who can live independently when they receive nursing, homemaking and personal support services.[81] The LHINs are mandated to promote the integration of health services within their regions. In furtherance of that mandate, all LHINs have a Regional Palliative Care Network that brings stakeholders together to strengthen quality, integrated services. Planning and implementation at the local level will be through the governance structure of these 14 Regional Palliative Care Networks, which will aim to ensure a system-wide approach to palliative care that is patient focused. The networks are connected through the Provincial-End-of-Life Network, which fosters strategic guidance, collaboration and the dissemination of best practices.[82] The LHINs are core participants in the OPCN.
Cancer Care Ontario: Cancer Care Ontario is mandated by the MOHLTC to improve cancer and kidney disease services, and access to care for key health services, through strategic guidance and funding arrangements with facilities and service providers. CCO creates and maintains information systems, establishes guidelines and standards, tracks system-wide performance, and delivers care at the local level through 14 regional cancer programs that correspond to the LHIN regions. CCO devotes considerable resources to improvements in palliative care, for example, by developing evidence-based standards and piloting early identification tools.[83]
Health Quality Ontario: HQO is a Crown agency that collects and analyses information on the quality of health care in Ontario, in part, through the review of annual performance reports that health care organizations are required to submit (called quality improvement plans). HQO publicly disseminates its reports and advises government and health care providers on evidence to support improvements.[84] HQO has conducted research to generate an evidentiary framework for end-of-life care.[85] HQO is a core participant in the OPCN.
Regulatory colleges and professional associations: Regulatory colleges oversee health care professionals’ responsibilities by drafting practice guidelines, standards and policies, and by undertaking enforcement. Professional associations advocate on behalf of their members in consultation with the government and regulatory colleges. Ontario regulatory colleges and professional associations have released documents relating to palliative and end-of-life care, decision-making and physician-assisted dying.[86]
Administrative tribunals: Three administrative tribunals adjudicate disputes relevant to care in the last stages of life. The Consent and Capacity Board (CCB) adjudicates disputes about capacity and decision-making, including issues surrounding the suitability of a substitute decision-maker’s (SDM) provision of consent for end-of-life treatments. The Health Professions Appeal and Review Board (HPARB) considers the reasonableness of regulatory college complaints committees’ findings about matters of professional conduct, for example, whether a health care provider has met practice standards in delivering palliative care. Finally, the Health Services Appeal and Review Board (HSARB) adjudicates complaints about eligibility for home and community services that have been dismissed by prior designed complaints committees.
Office of the Patient Ombudsman: The Patient Ombudsman is a recent addition to Ontario’s health care system with the first appointment to the role in December 2015.[87] The Patient Ombudsman’s responsibilities include responding to unresolved complaints from patients and caregivers about the patient’s health care experience at a health sector organization, which includes hospitals, long-term care homes and centres for coordinating home care.[88] Because the operationalization of the office is relatively new, there is little information currently available to understand its role and effectiveness. The Patient Ombudsman’s mandate does, however, include responding to complaints from patients and caregivers, investigating a health sector organization in response to the complaint or on her own initiative, making recommendations to a health sector organization, making reports to the MOHLTC and annual recommendations, and providing reports to LHINs as appropriate.[89]
5. Community organizations
Some community organizations overlap and collaborate with professionals working in this area of the law. Nonetheless, they have separate interests as communities advocating for the rights of their constituencies.
Advocacy organizations: Community organizations with an interest in this project include those advocating for patients, older adults, persons with disabilities and caregivers. Often advocacy organizations have conducted research, carried out law reform endeavors and published materials for public education. Hospice Palliative Care Ontario (HPCO) is a prominent voice for advocacy in this area. HPCO is also the Secretariat for the Quality Hospice Palliative Care Coalition of Ontario whose membership includes provincial associations and organizations, such as universities, community organizations and professional associations, among others.
Faith and cultural communities: Religion and culture strongly influence beliefs and practices surrounding death for individuals, families, health care providers and communities. Faith and cultural leaders have begun to address ethical approaches to the last stages of life in recent years with some having delivered positions on the appropriateness of different courses of treatment. They may also be involved in supporting persons as they move through the dying process by providing counsel, leading prayer, mediating disputes and performing rituals after death.
D. Questions for Discussion
- Within the scope of LCO’s project, are there any additional affected individuals, communities, and institutions that should be taken into account?
- Are there any additional recent debates or legislative frameworks that LCO should be aware of?