Ethical End-of-Life Care for Homeless Patients
June 1, 2023
Ethical issues arise frequently when caring for patients with serious illness or who are at the end of life. When a patient is homeless, the situation often is more ethically complex. “Patients are often left balancing their needs, goals, preferences, and priorities with limited options,” says Michael A. Light, MSW, MPH, LICSW, LMP, a social worker with Harborview Medical Center’s homeless palliative care team at the University of Washington.
Patients struggle with access to multiple settings — shelter, housing, hospitals, medical respite, long-term care, and other community-based locations. “They are experiencing forced containment within and expulsion from these settings,” Light explains.
It can result in a lack of goal-concordant care, disparities in health outcomes, and moral distress. “Healthcare providers feel unable to provide higher-quality care and ill-equipped to plan for creative alternatives,” Light laments. When patients experiencing homelessness are at the end of life, some simply lack decision-making capacity — and there are no surrogates to help. Other challenges are more nuanced.
For example, clinicians might want to discharge the patient to an appropriate care facility, but that location will not accept the patient because of a history of substance use or mental illness. Perhaps the clinician orders chemotherapy, and the facility currently helping the homeless patient offers the service, but no one can administer this treatment because of certain health insurance policy limitations.
Additionally, clinicians might identify a shelter for their homeless patient, but the shelter cannot accommodate the person because they are at risk for falls, are living with mobility issues, are taking narcotic medication, or otherwise cannot attend to activities of daily living.
Many states have enacted default surrogate statutes, which call on relatives to participate in decision-making. “However, some family members may have complicated relationship histories and may choose not to participate in care or decision-making,” Light notes.
Family members may not have any recent contact with the patient, so they cannot speak to the patient’s values and care preferences. Maybe the patient does not have any living relatives. Court-appointed guardians should be basing care decisions on patients’ values, but may not know how to access that knowledge. In this situation, Light recommends contacting community-based case managers, housing or shelter staff, behavioral health supports, or others who may know about the patients’ lived experiences, psychosocial needs, and personal values.
Lack of surrogate decision-makers is a frequent issue with unhoused patients in the ICU when a person has become estranged from family, according to Ann L. Jennerich, MD, MS, ATSF, assistant professor of medicine at University of Washington in Seattle. “Ethically, it can be problematic when clinicians make end-of-life decisions for the unhoused because of potential biases,” Jennerich adds.
Ethicists can help by facilitating conversations that allow a person to appoint a surrogate decision-maker before they can no longer make decision for themselves. “Advance care planning is important for everyone, even more so for patients who lack social support networks,” Jennerich observes.
In some states, physicians can make decisions without a surrogate. In other states, a court-appointed guardian is required. “One very helpful aspect of Washington state law is expansion of the list of people who can act as surrogates,” Jennerich notes.
Clinicians can find someone who knows the patient well enough to speak on their behalf, even if they are not biologically related. “In cases where no surrogate can be found, it is recommended that physicians consult an ethics committee,” Jennerich says.
Ethicists also can help proactively by providing education to direct care staff and to hospital administrators. “Ethicists can explain how housing instability may affect treatment and healthcare decision-making,” advises Ian M. Johnson, PhD, MSW, BA, assistant professor in the College of Social Work at The University of Tennessee.
For clinicians, encouraging patients to complete advance care planning, and then documenting it to ensure it is accessible when needed, can be challenging for any patient. For someone who is unhoused, the challenge is exponentially harder. If the patient does not see a primary care physician, a community-based provider might provide helpful information, such as a statement made by the patient. “Ethicists can serve a role in ensuring that a patient’s maybe-unconventional informal networks are heard and respected, even if they aren’t legally a part of healthcare decision-making,” Johnson says.
To provide ethical end-of-life care to patients experiencing homelessness, Light recommends clinicians maintain a low threshold to consult medical ethics for collaborative decision-making. Also, they should acknowledge their own potential bias. “There’s a tendency to see patients living without housing as inherently flawed, as people who have made or make bad decisions, and as lacking capacity or judgment,” Light notes. “We may tend to view patients through a lens of what they lack, not the assets that they have or the agency they have in their own lives.”
Additionally, clinicians should avoid using language in the medical record that is stigmatizing, “otherizing,” or demeaning, such as “drug addict.”
“Instead, describe the patient’s behavior objectively,” Light offers.
Finally, clinicians can request an ethics consult before making any decision to not provide care for a patient experiencing homelessness. Ethicists can analyze the ethical and equity implications and explore potential biases that are coming into play. “This includes exploring a bias for early transition to comfort-only focused care for people whose lives society places a lower value on,” Light says.
Clinicians should acknowledge their own potential bias and avoid using language in the medical record that is stigmatizing. Also, they can request an ethics consult before making any decision to not provide care for a patient experiencing homelessness.
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