The Critical Need for Palliative & End-of-Life Care for the Unhoused
The Critical Need for Palliative & End-of-Life Care for the Unhoused | By Dr. Pilar Ingle
“You know, hospice care is actually hard for the housed. So, it’s like a thousand times harder for the unhoused.”
This quote comes from my dissertation project, where I interviewed 17 healthcare and social service providers around Colorado in the summer of 2022 to find out more about their experiences working with unhoused individuals with life-limiting (advanced chronic illness that limits the life expectancy of a person, such as cancer or heart failure) or terminal illness (end-stage of a life-limiting illness). The speaker of this quote, who has experience working for hospice organizations and homeless service organizations, remarked on the challenges many people with terminal illness face when considering hospice care whether they are facing housing instability or not. Can they receive hospice at home? If hospice providers are only in the home a few hours per week, who will be there the rest of the time to care for them? For someone who is unhoused, these challenges are even more complicated in the face of houselessness, competing needs, social isolation, and inequitable access to healthcare.
As a healthcare researcher who studies access to palliative and end-of-life care, I believe everyone is deserving of care and a dignified death. Palliative care and hospice are forms of integrated, medical care that focus on quality of life for people with life-limiting or terminal illness, including pain and symptom management and psychological, emotional, and spiritual wellbeing. Palliative care is for anyone with a life-limiting illness from the time of diagnosis all the way through the end-of-life, whereas hospice is provided for individuals who are expected to die from their illness in six months or less. Yet, our society does a poor job of prioritizing palliative and end-of-life care.
I wrote more broadly on our culture around death and the policies that impact death and dying in the U.S. in a 2021 op-ed. These same issues (death avoidance, hospice reimbursement, rising funeral costs) deeply impact serious illness and end-of-life among our unhoused neighbors and are compounded by the structural issues that drive homelessness and the related stigma. Compared to the stably housed population, unhoused individuals have higher rates of chronic and serious illness, die at much younger ages, and are more likely to die in the hospital or in unsupportive settings, such as on the streets. Over and over again, unhoused folks have expressed fear of dying anonymously, in pain, and without dignity.
Most of the providers I interviewed for my dissertation emphasized the inhumane lack of resources available to address the health needs of our unhoused neighbors who are living with chronic or life-limiting illness across our healthcare and social service systems. There are few options for providing hospice care to unhoused folks nearing the end of their lives, and the options that exist are limited in resources. Moreover, our healthcare and housing systems are often siloed and don’t communicate with one another, which makes it difficult to create plans for care that are realistic for their unhoused clients. Many of the people I talked to highlighted the need for specialized palliative and end-of-life programs designed for the unique needs of unhoused individuals, such as street-based palliative care or social model hospice homes (non-medical homes that provide two vital things that often make it difficult for individuals to receive hospice care at home: a place to receive hospice care, and the informal, family-like care needed to support individuals around the clock).
Another related, common theme from my dissertation and in conversations I’ve had since with people invested in this issue is the issue of funding: we need the funding to invest in our unhoused neighbors, to improve our services, and to create new programs that tailor to palliative and end-of-life needs for those experiencing houselessness. We see this need for funding happening in action with Rocky Mountain Refuge. Featured in Episode 12, this innovative organization is one of a few social model hospice homes in the country dedicated to serving individuals experiencing houselessness with terminal disease, and the only one in Colorado. However, they’ve struggled with funding issues due to the lack of investment in end-of-life care, particularly for people who are unhoused.
It’s important to consider that this issue is more than ensuring that everyone has access to palliative and hospice care when they have a life-limiting illness. We must also address the factors and policies that cause or hasten the deaths of our unhoused neighbors. For example, a recent study led by Denver physician Dr. Joshua Barocas found that continuous forced displacements, or encampment “sweeps”, contribute to decreased life-expectancy of those experiencing houselessness. We must confront the stigma that leads to disparities in care—including unhoused individuals being less likely to receive life-saving treatment than stably housed individuals when presenting to the hospital with a heart attack.
The bottom line: it’s going to be difficult to create meaningful and accessible solutions to palliative and end-of-life care for our unhoused neighbors without also addressing the structural factors that create and maintain poverty and homelessness. As the Elevated Denver podcast has highlighted time and time again, these issues are interconnected. And in the meantime, we urgently need better palliative and end-of-life care options, like Rocky Mountain Refuge.
To donate to Rocky Mountain Refuge: https://rockymountainrefuge.org/donate
To learn more about social model hospice homes: https://www.omegahomenetwork.org
Denver Medical Examiner’s dashboard on Fatalities Among People Experiencing Homelessness: https://denvergov.org/Government/Agencies-Departments-Offices/Agencies-Departments-Offices-Directory/Public-Health-Environment/Medical-Examiner/Medical-Examiner-Data#section-6