3. Are there special end-of-life considerations for someone experiencing homelessness?
In the final section, we take up a question that is as important as it is difficult. We know that death is part of life. In our society we have ideas about what a āgood deathā means, which is often that a person dies comfortably at home surrounded by loved ones. Like the pandemic messaging, that says to stay home if you are sick, the idea of dying at home requires that one have a home in which to die. This notion is rather straight-forward but it raises a number of considerations. If a person does not have a home, where do they go to die? What happens to the personās belongings after they die? Who supports them at end-of-life if they are estranged from their family members?
Before you begin this section we encourage you to pause and consider this idea of a good death and whether it is possible within the context of homelessness. How can a person be supported to die a good death? Are there special end-of-life considerations for someone experiencing homelessness? You may use the space below to write your thoughts and reflections.
How to complete this activity and save your work: Type your response to the question in the box below. When you are done answering the question navigate to the āExportā page to download and save your response. If you prefer to work in a Word document offline you can skip right to the Export section and download a Word document with this question there.
This section follows from the previous two sections not only in order, but in logic. If a person has multiple chronic and complex health conditions and does not receive adequate health care to treat them, their risk of dying is considerably higher. We see from the research that people who experience homelessness have four times the rate of cancer (Lawrie, Charow, Giuliani, & Papadakos, 2020) and face higher risks of dying from hypothermia (Zhang et al., 2019), cardiovascular disease (Baggett et al., 2018), or as the result of cirrhosis, drug overdose, murder, or assault (Webster, 2017). In the next video, Dr. Katrina Milaney reflects on how being excluded from mainstream health care creates the conditions of neglect for people experiencing homelessness that carry into end-of-life.
Dr. Katrina Milaney: Are there special end-of-life considerations for someone experiencing homelessness?
In this video, Dr. Katrina Milaney explains that people who experience homelessness are often excluded from mainstream health care because of discrimination, which can lead them to get caught in a cycle of poor health and exclusionary practices. She notes that this cycle continues at end-of-life, as there are many people dying in shelters without good palliative care. While mobile teams do offer palliative care onsite in some agencies, Dr. Milaney argues we need to address the underlying issue that people experiencing homelessness lack equal access to the same kinds of care and dignity, at any stage of life, as those who are housed. This video is 2:00 in length and has closed captions available in English.
Key Takeaways ā Dr. Katrina Milaney: Are there special end-of-life considerations for someone experiencing homelessness?
- Many people who experience homelessness are excluded from mainstream health care. This largely occurs because there is a lack of understanding about why homelessness occurs, and people are blamed for their situation.
- People experiencing homelessness often have negative health care encounters and can get caught in a cycle of poor health and exclusionary practices.
- For example, a person might have a chronic illness, such as diabetes or COPD that creates a health crisis and a visit to the emergency room, where they are treated and released. The patient may stabilize on medications while in hospital but then not be able to sustain them after discharge.
- The cycle of poor health and exclusion does not change at end-of-life.
- There are many people dying in shelters without good palliative care.
- Mobile teams may provide palliative care onsite at some shelters or agencies. This helps but does not address the underlying issue that people experiencing homelessness lack equal access to the same kinds of care and dignity ā at any stage of life, including end-of-life ā as those who are housed.
In a highly cited study, Dr. Stephen Hwang and his team (2009) examined mortality rates for people experiencing homelessness or housing vulnerability compared to those in higher income brackets. They calculated the probability of living to age 75 as an indicator. Take a moment to think now about your own life expectancy. What do you think the chances are that you will live to be 75 years of age? In this study, Hwang et al., (2009) found that for women living in homelessness or precarious housing, the probability of living to age 75 was 60% and for men it was a mere 32%. The risk of dying ā and of dying prematurely ā is considerably higher when a person is experiencing homelessness than when they are securely housed. Consider this statement as you watch Dr. Naheed Dosani speak about his work providing palliative care to people experiencing homelessness at end-of-life.
As we alluded to in the introductory part of this section, not having housing or a suitable place in which to die, is a primary challenge of supporting people experiencing homelessness to have a good death. Not having housing also removes a personās ability to choose where they want to die. For instance, a review of how income impacts place of death in Toronto, not specifically related to homelessness, showed the those in the lowest income quintile were more likely to die in a hospital or palliative care unit than at home (Wales, Kalia, Moineddin, & Husain, 2020). While these places can certainly offer excellent end-of-life care, people experiencing homelessness are often lacking choice in whether or not they wish to die somewhere else. This suggests that people with lower incomes may lack the social and financial resources to die in a place of their choosing, such as their own home. In the next video, Dr. Bernie Pauly explains the need for more housing and hospice resources.
Dr. Bernie Pauly: Are there special end-of-life considerations for someone experiencing homelessness?
In this video Dr. Bernadette [Bernie] Pauly explains that it is often when they are nearing death that people who experience homelessness finally get access to housing. She notes that they often lack access to hospice care and may either get better in housing or die with limited resources. This video is 1:20 in length and has closed captions available in English.
Key Takeaways ā Dr. Bernie Pauly: Are there special end-of-life considerations for someone experiencing homelessness?
- It is often at the palliative phase that people experiencing homelessness get access to housing. They then either get better or sometimes die with limited supports. These individuals often lack access to hospice and other community resources.
Access to palliative care is a right that should be available to all persons at end-of-life, but a review of the literature shows that access is largely tied to having a higher socio-economic status (Huynh, Henry, & Dosani, 2015). Since there is no unified national strategy, many programs are inaccessible to people experiencing homelessness or are designed in ways that are prohibitive to meeting their needs (Huynh et al., 2015). Despite the high prevalence of multiple chronic health conditions and early mortality rates, there is limited published research on palliative care for people experiencing homelessness, and associated considerations such as their unique and complex circumstances, patient-related outcomes, caregiver burden, and cost-effectiveness (Sumalinog, Harrington, Dosani, & Hwang, 2017).
One of the barriers for people who are at end-of-life and experiencing structural vulnerability is that health care places tend to be imbued with social relations of power that reinforce structural vulnerability and produce further inequities in access and care (Giesbrecht et al., 2018). For instance, palliative care treatment, such as for people with advanced cancer, may be complicated by complex symptom burden among people who experience homelessness, are Indigenous, have a history of addictions, and have mental health or psychosocial issues (Santos Salas et al., 2019). We need to consider how previous experiences of health care, and power relations within them, influence peopleās decision-making in relation to seeking support for serious illnesses like cancer (Moravac, 2018).
Dr. Stajduhar and her team (2019) conducted a critical ethnography with structurally vulnerable people at end-of-life, their support persons, and service providers, and found there were five significant barriers to accessing care that they faced. These included the need to focus on survival like finding food and shelter, the normalization of dying within this population and on the street, the problem of not being identified as being in need of end-of-life care unless actively being treated by a health care provider, having their environments being thought of as unsafe or risky for care providers to go particularly around stigmas attached to substance use, and cracks in the siloed care systems making it difficult to navigate care between health and social service systems (Stajduhar et al., 2019). Here Dr. Stajduhar speaks about her research further.
Dr. Kelli Stajduhar: Are there special end-of-life considerations for people experiencing homelessness?
In this video, Dr. Kelli Stajduhar explains that a palliative approach to care is taking an upstream view for people who have serious and advancing chronic illness. For people experiencing homelessness, attending to the social determinants of health is the first palliative intervention. She notes that the average life expectancy for a person experiencing homelessness is lower than the average housed Canadian, but that these individuals are not always treated as though they are near death because the focus is on basic survival. Dr. Stajduhar notes that the unsafe drug supply and criminalization mean that within many communities dying has become normalized. People who experience homelessness may go to the hospital for serious chronic illness, yet not be identified as needing palliative care interventions. Dr. Stajduhar argues it is important not to make assumptions, but rather to use tools like advanced care planning to document their wishes. Much like the AIDS epidemic, people experiencing homelessness at end-of-life may be closer to non-biological persons than their bio-legal families, but these individuals may not be permitted to participate in their care plans. Dr. Stajduhar concludes that people experiencing homelessness near death may wish to die in a place that is comfortable to them, such as in a tent, and health care workers are needed even if they feel uncomfortable. Part of the work of mobile palliative care teams is about building community capacity and strength to flatten power differentials such as addressing the discrimination and stigma these patients experience, even when near death. This video is 8:55 in length and has closed captions available in English.
Key Takeaways ā Dr. Kelli Stajduhar: Are there special end-of-life considerations for people experiencing homelessness?
- A palliative approach to care is taking an upstream view for people who have serious and advancing progressive chronic illness, such as cancer, COPD, kidney failure, or liver failure.
- Attending to the social determinants of health for someone who is progressing towards death is the first palliative intervention.
- In mainstream palliative care there is a focus on pain management and getting symptoms under control. Within the context of homelessness, the first priority is to attend to the social determinants of health before anything else.
- In palliative care the question is posed, āIs homelessness a terminal diagnosis?ā
- The average life expectancy of a person experiencing homelessness is significantly lower than the average housed Canadian.
- There are many people who are dying that go unnoticed because palliative care is not often integrated into the homelessness sector. People experiencing homelessness, and their support workers, are focused on survival, such as obtaining housing, food, and supports or managing a substance use issue.
- An unsafe drug supply, combined with the criminalization of drugs, has created a situation where dying seems to be normalized within many communities.
- We cannot make assumptions about what people want at end-of-life.
- People experiencing homelessness may go to the hospital regularly for advancing chronic illness, but not be identified as needing palliative care.
- Research shows that a lot of people who experience homelessness do want health care interventions when near death because they have survived many hardships already.
- A critical piece of palliative care with this population is advanced care planning.
- In Victoria, the team of palliative care workers, outreach and housing workers, and people with lived experience developed an advanced care planning tool.
- When someone is hospitalized, they may not have strong connections to their biological family and/or be able to speak for themselves. The advanced care planning tool ensures peopleās decisions are documented and provided to the hospital.
- Reflective of the AIDS epidemic, people experiencing homelessness near end-of-life may be closer to non-biological persons than their bio-legal families. These individuals, while close to the dying person, may not be recognized as decision-makers in their care.
- In the health care system, we often want to support people to die at home. Those experiencing homelessness may wish to die in a tent or other place where health care workers may express resistance to going.
- When people experiencing homelessness are at end-of-life, they still face the same stigmas and discriminations within the health care system and by society in general.
- Mobile palliative care services are not about coming in and taking over, but rather helping communities build capacity and strength to flatten power differentials through palliative care efforts.
What do you think?
Dr. Stajduhar explains that in palliative care the question is posed, āIs homelessness a terminal diagnosis?ā Based on what you have learned so far, what do you think? Is homelessness a terminal diagnosis? Does it need to be a terminal diagnosis, or is there something we could do to change this trajectory?
Dr. Stajduhar makes the comparison to people dying during the AIDS epidemic being denied the support of their partners and chosen family because of restrictive societal definitions of who constitutes oneās family. We see similar circumstances as people experiencing homelessness may die, particularly if in hospital, without being permitted to have their street friends and families present. This issue is explored further in the featured reading below, from Dr. Stajduhar and her research team. This article details a study of 25 family caregivers for people at end-of-life, which found that nearly half of the family caregivers were themselves living with constraints of structural vulnerability, such as poverty, substance use, and homelessness, and were part of the personās street family (Stajduhar, Giesbrecht, Mollison, Dosani, & McNeil, 2020). We invite you to read this ethnographic study below.
Featured Reading:
Stajduhar, K. I., Giesbrecht, M., Mollison, A., Dosani, N., & McNeil, R. (2020). Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life. Palliative Medicine, 34(7), 946ā953.
A final issue pertaining to end-of-life care that has already been raised, but deserves further consideration, is that of planning for oneās death and what happens afterward. Many people in society create wills as a way to dictate who will receive their property, such as their house, and who will inherit any money they leave behind. Many people will also have written instructions on what they want to happen to them in the event of a medical emergency, such as providing life-sustaining measures or not. When a person who is experiencing homelessness nears death, they often will also have possessions they wish to give to the special people in their lives, and ideas about how they want their final moments to be spent.
Advance care directives are used in palliative and medical settings to help a person document these wishes in the event they are unable to communicate them directly at a later time. Leung et al., (2017) conducted a study in Toronto to see whether advance care directives created in a community setting by people experiencing homelessness would be utilized in subsequent hospitalizations over the period of 1 year and found that hospital workers were significantly likely to use them if they were on record. In the next video Dr. Stephen Hwang, a co-author of this study, explains the value of advance care planning in helping to navigate some of the challenges associated with end-of-life care for people experiencing homelessness.
Dr. Stephen Hwang: Are there special end-of-life considerations for someone experiencing homelessness?
In this video, Dr. Stephen Hwang discusses the additional challenges of offering palliative care to patients who lack housing. He notes that often these patients have close relationships with others residing or working in shelters and may wish to die in the shelter itself. He explains that these patients may have lost contact with biological family members in their lives and wish to re-establish these connections when they are near death. From a health provider perspective, Dr. Hwang notes, it can be challenging to know who to contact when an unhoused patient arrives at hospital actively near death. He urges practitioners who work with homeless populations to ask the āsurpriseā question, about whether they would be surprised if the person died within a year. If the answer is no, practitioners should have end-of-life discussions. Dr. Hwang concludes that these conversations should likely occur with most people experiencing homelessness, as their risk of death is considerably higher. This video is 3:07 in length and has closed captions available in English.
Key Takeaways ā Dr. Stephen Hwang: Are there special end-of-life considerations for someone experiencing homelessness?
- Palliative care is always challenging, but even more so when the person lacks housing.
- People who experience homelessness often have connections to others, such a street family, others residing in a shelter, and/or workers in the homelessness sector. These individuals are special to the person but not considered family with legal protections.
- For some individuals, dying at home means being able to die in the shelter. This is important to realize but difficult to honour.
- These patients may have had falling outs with their family and may desire to re-establish these connections when near death.
- Within the hospital it can be challenging to know who to contact when a patient arrives at the emergency room actively dying, and the staff have no way of contacting their family.
- Practitioners working with people experiencing homelessness should ask the āsurpriseā question: Would you be surprised if this person died in the next year? If the answer is no, then an end-of-life discussion is needed.
- We should probably be having these conversations about advanced directives and next of kin with the majority of people experiencing homelessness because their risk of death is higher, due to poor physical health and/or addictions.
Advance care planning is an important palliative care measure because it offers tangible guidance to care providers while also providing the person who is near death a sense of reassurance that their wishes will be respected. This planning can be done at any stage, even if not immediately near death, to help document and communicate oneās requests. As Dr. Stajduhar explains in the next video, this process provides hope to the individual and their support network within the community.
Dr. Kelli Stajduhar: The impact of palliative care in the community
In this video, Dr. Kelli Stajduhar reflects on her involvement in community-based palliative care work, and the important role it plays for people experiencing homelessness. Notably, she cites advanced care planning as something that occurs in palliative care, where health and social care providers talk with people about what is important to them and what their wishes are. This information is recorded and submitted to the hospital for use in the event the person is admitted while critically ill. Dr. Stajduhar concludes that palliative care approaches offer community members a sense of hope that their wishes will be respected. This video is 3:31 in length and has closed captions available in English.
Key Takeaways ā Dr. Kelli Stajduhar: The impact of palliative care in the community
- People may not always understand the role or importance of palliative care within community-based agencies.
- In palliative care, one of the things that happen is advanced care planning, where health and social care providers spend time talking with people about what is important to them and what their wishes are. This information is written down and sent to the hospital to be kept on record.
- For people experiencing homelessness, advanced care planning is important because it may not be clear whom to call if they are critically ill in hospital, and/or to whom to provide their property after death.
- Advanced care planning offers people a sense of hope that their wishes will be listed to and respected.
People who experience homelessness and their health care providers negotiate many obstacles in the provision and receipt of palliative care. However, there is tremendous potential and opportunity to improve quality of care at the endāofālife for this vulnerable population (West, Wrobel, Pallotta, & Coatsworth, 2020). Opportunities for helping people achieve a good death are explored further in this brief video entitled, āDignity, at the end of life, for the homeless.ā
Death and dying are difficult topics to consider. As we began this section by stating, we have specific ideas about what a good death looks like in our society, which generally means dying at home, in bed, surrounded by loved ones. Homelessness challenges this notion and requires that we think differently about what it means to support someone who is at end-of-life without the resources and comforts that many housed individuals might take for granted.
We began by referencing the preceding sections that showed people who experience homelessness often have complex and chronic health issues and lack equitable access to the primary care needed to treat them. The rates of mortality are considerably higher amongst people experiencing homelessness, as is dying at an earlier age. You may recall that research shows the chances of living to age 75 are only 60% for women and 32% for men experiencing homelessness (Hwang et al., 2009). These figures are heart-breaking, if not surprising.
We learned that although palliative care is a right there is no unified national strategy, which makes access particularly challenging for people living with structural vulnerabilities like homelessness. The research identified a number of special considerations for people experiencing homelessness at end-of-life. Notably, they may lack access to hospice care, not be permitted to die in a shelter, not have their loved ones with them, and have their possessions discarded against their wishes. Some of these challenges can be prevented through advance care planning, which is a tool used in palliate care to help people document and communicate their wishes. While palliative care is a difficult field, it is critically important to provide hope to people at end-of-life, their loved ones, and the community as a whole.
Podcast: Are there special end-of-life considerations for someone experiencing homelessness? (19:54)
Click the link below to listen to all of the researchers answer the question āAre there special end-of-life considerations for someone experiencing homelessness?ā in audio format on our podcast!
