Palliative care as a public health issue: understanding disparities in access to palliative care for the homeless population living in Toronto, based on a policy analysis

Even in a developed country such as Canada, a person’s housing status can predetermine not only the degree to which they are treated with respect and dignity, but also their access to basic health care services1. Regrettably, the word “homeless” has become both a negative descriptor and a stereotype in our society2.

Palliative care—defined by the World Health Organization as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering”3—is care that should be accessible to all despite social or socioeconomic status. Some authors have argued that palliative care is a human right4; however, the underpinning of the modern palliative care movement is structured on several problematic assumptions: an expectation that patients will have an informal support network (family and friends) and a stable and secure residence, and that access to health care is free of financial and other barriers through the provision of publicly funded health services5. It is the premise of this paper that those assumptions fuel the existence of a fundamental structural inequality within our current system. By “structural inequality,” we mean that the system is designed in such a way that a certain category of people (in this case homeless people) are consequentially afforded an unequal status in relation to others in the form of both rights and opportunities6.

Here, we use policy analysis to look at current data from the available literature about the known disparities in access to palliative care services experienced by the homeless population. That information, coupled with the use of a public health ethics decision-making tool, such as Good Decision Making in Real Time framework7, is used to explore the common ethics challenges that can arise in public health interventions that aim to provide palliative care to homeless adults.

Not surprisingly, given their challenging life environment in the shelter system and on the streets, many homeless people have considerable experience with death and dying5. Regrettably, reports based on qualitative research studies in this population have shown that many homeless men and women expect their own death experiences to be both sudden and violent1. We remain optimistic that a broad critical exploration of the system will allow for appropriate upstream changes to improve equitable access to supportive palliative care for this marginalized population.

Definitions

Policy Analysis

Though not meant to be exhaustive or comprehensive, the present analysis involves a review of past reports, research findings, and policy proposals, and attempts to generate a narrow and goal-focused set of opportunities, recommendations, and strategies to address the issue of the disparities that exist in palliative care for homeless people.

After a review of the literature, the most significant documents at the core of our analysis are Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnerships and Commitment to Actions8 (published in 2012, this report represents the collaborative effort of more than 80 stakeholders from across Ontario) and An Overview of Compassionate Communities in England9 (published in 2013). Together, those documents outline a global and local vision for shaping the future of palliative care, potentially affecting service delivery to the homeless population in very significant and different ways.

Disparity

“Disparity” is defined as a “lack of similarity or equality; inequality; difference or the condition or fact of being unequal”10. Braveman described health disparity as “a particular type of potentially avoidable difference in health or in important influences on health that can be shaped by policies; it is a difference in which a disadvantaged social group or groups experience worse health or greater health risks than the most advantaged social groups”11. In that context, health disparity here refers to the lack of access that homeless people have to palliative care.

Homelessness

Homelessness in Canada is defined by the Canadian Observatory on Homelessness as “the situation of an individual or family without stable, permanent, appropriate housing, or the immediate prospect, means and ability of acquiring it. The etiology of homelessness is complex and multifaceted. Typically it stems from both systemic and societal barriers such as a basic lack of affordable and appropriate housing; individuals and households living below the poverty line; a constellation of either mental, cognitive, behavioural or physical challenges; and/or racism and discrimination”12.

Quantifying the Problem: Demographic and Epidemiologic Data

In 2013, a census identified the total homeless population in Toronto, Ontario, at approximately 5220. Of that total, 8% (447 individuals) were found living “rough” (on the street), and 76% were living in city-administered shelters. Given a total population of 2,615,056, homeless people in Toronto account for approximately 0.2% of the population13. Meanwhile, in 2010, the Centre for Research on Inner City Health at St. Michael’s Hospital completed the health and housing in transition study, which showed that, for every homeless individual in the city, 23 individuals are vulnerably housed—that is, they spend more than 50% of their income on rent, live in poor conditions, or have only episodic housing stability. The vulnerably housed population was found to have a disease prevalence similar to that seen in people who were defined as homeless14.

It has been reported that between 50% and 57% of homeless people have a serious diagnosable mental illness, 80% of whom go untreated5. In addition to mental health issues, 62% have addictions to alcohol, and 58%, to other forms of drugs1. Homeless men have a life expectancy of only 42–52 years, and their mortality rate is 3–4 times the national average1,2. Given the high mortality rate in the population, it is not surprising that only 2%–28% of homeless individuals are elderly (65 years of age and older)5. A study published in 2000 identified, for men using the shelter system in Toronto, the following mortality ratios (mortality rate for homeless men divided by the mortality rate for the general population) by age group: 8.3 for men 18–24 years of age; 3.7 for men 25–44 years of age; and 2.3 for men 45–64 years of age15.

A recent report noted that upward of 50% of homeless people do not have a primary care physician, which results in a higher use of hospital emergency departments as the primary care location for this population16. It was noted that acute health care utilization for homeless people can be 3–4 times that of the general population, with visits by homeless individuals to the emergency department accounting for 25% of the total volume in some large urban centres. In addition, patients defined as homeless will typically have a 36% longer length of stay because of a lack of the social supports and safe housing that could normally expedite discharge1.

Although vulnerably housed and homeless individuals have been identified as representing only 0.2% of the total urban population in Toronto, the current precarious economic situation in Canada’s largest city could result in a sudden increase in those populations at any time. A recent survey noted that apartment vacancy rates are only 1.8% and that individual income assistance programs were averaging $656 per month when the average apartment rental is $1028, indicating that many people are currently living in at-risk conditions. In 2014, only 94,520 public and subsidized units existed, and the wait list for such accommodation had reached 77,150 people13.

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