By Stacey Kusterbeck
For formerly homeless residents living in permanent supportive housing (long-term affordable housing with social services available onsite), there are unique ethical concerns regarding end-of-life care, a recent study found.1 “The population of people being housed in permanent supportive housing are often older and are more likely to have chronic illnesses compared to the general population, meaning that they are likely to age and die while residing in permanent supportive housing,” observes Emma McCune, MD, the study’s lead author and a resident at UCSF Department of Medicine.
McCune and colleagues interviewed 17 formerly homeless residents living in permanent supportive housing in San Francisco about what they hope for and expect for end-of-life care. “Everyone has the right to dying with dignity and respect. This study can help us understand how to better tailor end-of-life care to a population that is often overlooked,” says McCune
Clinicians should have an understanding of the physical environment and social context in which the patient lives before making recommendations regarding end-of-life care, says McCune.
Many participants described challenges, both structural and social, to being able to die peacefully and comfortably in their homes. These challenges may not immediately be obvious to a clinician. “It is imperative that a clinician explores what their patient values most at the end of life and makes an assessment on whether these values are achievable in their current living situation. It would be unethical to overpromise on end-of-life care services that are not achievable for an individual either due to lack of resources and/or lack of social support,” says McCune.
There was a dissonance between how a person living in permanent supportive housing would prefer to spend their final days vs. how they expect to spend their final days. Many participants expressed a desire to not be alone at the end of their life. However, they identified geographic distance and long-term estrangement from family as barriers to achieving this. Some residents talked about not being able to live with someone because of permanent supportive housing rules, and reported lack of close relationships with neighbors.
Some participants could not name a single person they trusted to make decisions on their behalf at the end of their lives if they lost decision-making capacity. Others identified staff as the only people they could confide in or trust to ensure their wishes would be followed at the end of life. Some talked about fears of dying alone in their apartments because of routine visits by staff being inconsistent, and expressed a wish to die in a hospital where healthcare providers would check on them consistently.
“I have also cared for patients in the hospital whose case managers or social workers are their strongest advocates and have helped the inpatient team tremendously in aligning our medical plan with the patient’s wishes and desires,” reports McCune.
The study revealed the critical role that onsite care providers (nurse practitioners, social workers, and case managers) play in the lives of many people who live in permanent supportive housing. “When caring for a person living in permanent supportive housing, it is important that clinicians partner with these interprofessional colleagues who are working onsite at the patient’s residence,” says McCune. This is especially important when coordinating care transitions, such as a discharge from the hospital or a transition to hospice.
However, it also is important to respect the boundaries and scope of the nurse practitioners and social workers working in these roles. Serving as the designated power of attorney for an individual can be an emotionally challenging task. “It may be unfair to ask that of these individuals, on top of the many responsibilities that are expected of them,” acknowledges McCune.
In the hospital setting, clinicians face multiple ethical issues involving unhoused patients, reports Craig M. Klugman, PhD, a professor of bioethics and health humanities at DePaul University and ethics committee member at Northwestern Memorial Hospital. Klugman consulted on a case involving an unhoused person from Central America who had no family and arrived at the hospital unconscious and with little likelihood of recovery. The main question ethicists faced was who would make decisions for this patient.
First, ethicists reached out to social workers and the city police department who visited the encampment where the patient had been living. Although many people there knew of the patient, none knew of his family or friends. They knew he was from Central America, but no idea of the town or how to contact his family. Under Texas law, when a patient is unrepresented and lacks a medical power of attorney, the list of default surrogate decision-makers is spouse, adult child, parents, designated surrogate, nearest living relative, or member of the clergy.2 No friends or family were identified who were willing to take on that responsibility. No one knew if the patient had attended a religious institution and no clergy knew him. “Having a court appoint a guardian would take time that we did not have,” says Klugman.
Ethicists knew of a reverend who worked with the community assistance center for the unhoused. “We invited him to an ethics consult meeting to weigh in and be a representative, similar to what we would do for an IRB (Institutional Review Board) considering research in another culture or among prisoners — experts from those communities,” says Klugman. The clergy member volunteered to provide information based on his outreach work in the unhoused community.
“He was able to add a lot to the conversation. He was a cultural ambassador explaining his knowledge of that community’s values and perspectives, and what would be an acceptable life,” says Klugman.
The clergy member was willing to take on the role of surrogate decision-maker as outlined in the law. “Finding a surrogate voice for a patient who is unhoused can be challenging, given that they are likely to be separated from family and even friends. Having an expert in the community be part of a family meeting ensured that we had knowledge of the patient’s community, a voice, and perspective that we would not have had otherwise,” says Klugman.
To help ensure ethical care of unhoused patients at their institutions, Klugman suggests that ethicists use these approaches:
Create a policy before you need it. Ethicists can start by reaching out to general counsel and risk management and see what programs, proposals, and guidelines already exist. “If they have policies in place, you can offer to review and update them. If they have nothing in place, you can educate them about the need and take the initiative,” suggests Klugman.
Another approach is for a hospital to put together an “unhoused patient subcommittee” of the ethics committee to craft a policy, and to be available when decisions need to made. “Ethicists can and should take the lead in creating these support groups and in reaching out to recruit a community member. After all, someone has to and we know that there will be more of these cases. Prevention is better than reaction,” says Klugman.
Some states require an ethics committee for end-of-life decisions, some require input from a social worker, and others require a consultation with an independent physician. “The best approach for your institution will depend on state law. Remember that the law is usually the minimum that one must do,” says Klugman.
Know your patient populations. If a clinic or hospital has a substantial population of a cultural or ethnic group, it is important for ethicists to know something about those groups. The same is true for unhoused patients. “Learning about their lives can help when you are faced with a case,” says Klugman.
Contacting an organization that serves the unhoused can give ethicists access to people who know about this community and their needs. “Remember that unhoused does not mean unknown. The unhoused patient might be very loved and known in various camps and shelters,” observes Klugman. “Likewise, unhoused does not necessarily mean unrepresented. First, attempts should be made to find people who know the patient, in both camps and shelters. Second, ethicists can look for family members. There might be police missing persons reports, or ethicists can do an online search to see if any connections come up.
“If the patient really is both unhoused and unrepresented, have an ethics subcommittee, which might include ‘street clergy’ or healthcare providers who do work with the unhoused, get involved with the case,” recommends Klugman.
Holland Kaplan, MD, an assistant professor of clinical ethics and general internal medicine at the Center for Medical Ethics and Health Policy at Ben Taub General Hospital, a safety net hospital, cares for many people experiencing homelessness, and sees these ethical issues frequently in these cases:
Discharge planning and continuity of care. “Patients experiencing homelessness often face significant structural challenges that directly impact their health outcomes,” says Kaplan. Patients have legitimate concerns that essential medications, particularly opioids or other pain medications, might be stolen. Patients often struggle with receiving proper wound care and getting reliable transportation to follow-up appointments. “Ethicists can play an important role here by collaborating with healthcare teams and hospital administration to develop a framework for what constitutes a ‘safe discharge’ within their healthcare system and geographical area, accounting for local resources and institutional policies,” suggests Kaplan.
Lack of trust. Many patients who are homeless have had negative encounters with healthcare providers or law enforcement. These experiences can lead to mistrust toward systems that, ideally, should be supporting them. “Ethicists can provide education on mitigating these challenges via trauma-informed care and fostering transparent communication between providers and patients,” says Kaplan.
Implicit bias. “Negative stereotypes, like assumptions about poor adherence to medical recommendations, can adversely affect clinical decision-making,” says Kaplan.
Many unhoused individuals also may be grappling with mental illness or substance use disorders, which carry additional stigma. “Ethicists can ensure that healthcare teams are aware of these biases and are not allowing them to impact their clinical decision making,” advises Kaplan.
Managing moral distress. The many challenges associated with caring for patients living with homelessness can lead to significant moral distress among healthcare providers. Unfortunately, these ethical dilemmas often arise from systemic issues that are difficult to resolve.
“Ethicists can alleviate some of this distress by working with teams to manage their moral distress productively. This might involve providing an ethical analysis reassuring a healthcare team that they have truly optimized the safety of a patient’s discharge,” says Kaplan.
Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.
References
1. McCune EK, Visser MR, Bamberger J. “Nobody wants to talk about it, especially in this building”: A qualitative study of how people living in permanent supportive housing approach end-of-life care. Omega (Westport). 2025;90(3):990-1006.
2. Texas Constitution and Statutes. Health and Safety Code 4.f.313. https://statutes.capitol.texas.gov/docs/HS/htm/HS.313.htm#:~:text=(c)%20If%20a%20surrogate%20decision,execute%20an%20informed%20consent%20form
Homelessness complicates end-of-life care because of isolation, surrogate scarcity, and structural barriers. Ethicists should collaborate with interprofessional teams to ensure respectful, context-aware care and advocate for inclusive policies addressing this vulnerable population’s needs.
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