Improving access to palliative approaches to care for vulnerable and marginalized populations (ePAC)

ePAC is a program of research focused on improving access to, and  quality of, care at the end-of-life. We work in participatory and collaborative ways with people in community and the health and social care systems to conduct local, national and international research that aims to bring attention to, and enhance provision of, equity-oriented palliative care. Through our research and partnerships, members of our collaborative develop resources and tools, programs and services aimed at improving palliative care for those who are often excluded from care. See our ePAC collaborative page here.

People all over the world have different access to health care and the conditions that create good health, like safe housing, enough income, clean water, and nutritious food. When these differences create social disadvantage such as lower life expectancies, suffering and poor quality of life, we call it inequity. People experiencing inequities as a result of racism and discrimination, ageism and ableism, criminalization of illicit drugs, stigmatization of mental illness, poverty or homelessness, need approaches to care that recognize system barriers and seek to do something about them. Equity-informed care doesn’t mean “equality” - or giving everyone the same thing. It means that we direct our attention and resources to people who have the greatest needs.

Broad demographic trends in the 21^st century include an aging population with more chronic disease and social burden. Social supports have not kept pace with the widening income gap, increasing cost of living, and extreme unmet need. In Canada, seniors (55+) are emerging as the “new face” of homelessness. When we talk about life-limiting conditions, we must also contend with the growing social inequities such as homelessness, poverty, racism, ageism, ableism, and stigma that cause early, unjust, and preventable deaths.

Current health care policies and directives encourage moving the site of care from hospital into community. Yet, early patient discharge from hospital to home and prioritization of these acute care patients mean that older, frail, chronically ill people and those in need of palliative supports are less likely to have timely access to needed services. Care is increasingly shaped by risk and safety discourses removing the ability for people to have their needs and preferences heard or attended to by providers. These trends have exacerbated population-level inequities in access to supportive care in the community.

Some people are fortunate enough to have families and friends to step in and fill the gaps. Others are not so lucky. Societal and health trends are disadvantaging already disadvantaged people. Options become limited for people who do not have the financial resources or social support to get care and remain at home to live and die. Some people end up in under-funded long term care homes, while others end up in hospital in crisis, and still others wind up spending time isolated and suffering at home without the support to die well.

Growing social inequity and the changing context of care means that equity-informed palliative care is needed now more than ever.

The modern hospice and palliative care movement emerged in the 1960s as a response to health systems focused on treatment and cure. In these systems, people living and dying with life-limiting conditions experienced dismissal and marginalization. Rather than seeing illness as something to be controlled and death as a failure, palliative care leaders emphasized relief from suffering and quality of life until death.

Palliative and hospice care gained popularity in the 70s and 80s as it became formalized in health care institutions. This formalization came with professionalism (i.e., palliative care experts), institutionalization (i.e., palliative care as a place), and routinization (i.e., palliative care as a set of tasks). While the growth of palliative care has undoubtedly improved people’s lives and encouraged a different way to approach life-limiting illness, a consequence has been the narrowing of palliative care to a specialist service rather than an approach to care.

Our program of research follows in the footsteps of many who have come before to improve quality of living and dying and to prioritize the needs and wishes of the dying person embedded in their family and community.

A palliative approach involves attending to the whole person including their physical, mental, emotional, social, and spiritual needs. It prioritizes autonomy, self-determination, and support for a person’s caregivers and communities. As an approach, palliative care can and should happen across settings wherever people are living with life-limiting conditions and dying – hospice and palliative care units, long term care, acute care, and in people’s homes and communities. See more on a palliative approach on the iPanel site.

Recognizing that people have been looking after their family members, friends, and communities for years, there are movements to re-instill some of the grassroots foundations associated with care of people who are dying. These movements – such as Compassionate Communities – recognize that death and dying has never really been solely a medical experience, but also a social one. Our experiences and meanings of health, loss, grief, illness, and dying are shaped by social factors including historical and ongoing access to health and social care, quality of care, and the conditions we are living in and with (e.g., housing, income, social networks, geography, etc.).

Our research program seeks to understand and support the development of equity-informed palliative approaches to care across settings. This includes increasing the capacity of communities to show up and attend to death and dying wherever it happens.