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.
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. By 2011, Canadians lived an average of about 82 years with the most common age at death being 85. 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.
Therefore, more Ontarians are living longer; however, we are living longer with chronic illness and complex needs that require dedicated care. 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. 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.
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. 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. 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. 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.
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.
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); whereas in Canada and elsewhere, the practice is characterized as an avenue of last resort for persons whose death is reasonably foreseeable. Furthermore, in contrast to some countries, in Canada adults must be capable of requesting medical assistance in dying at the time of receipt. 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. (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. 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”. 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. 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”.
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. 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.
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” 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.
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. 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. 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. 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. However, the majority of Canadians still die in hospital.
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’