BWH Clinical Ethics Case Review, a monthly newsletter, is published by the BWH Office of Clinical Ethics. Each issue highlights a BWH case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and BWH Ethics Committee discussion. Some of the details in this case review may have been altered in order to protect patient privacy and confidentiality. “We’re Worried about Discharging a Homeless Patient”
Ethical Concerns Around Discharge with a Less-Than-Ideal Plan
This issue of the BWH Clinical Ethics Case Review highlights a case in which a homeless patient with a serious medical condition wanted to leave the hospital without being treated and return to living on the streets.
The patient was a middle-aged man who had lived on the streets in the same neighborhood for decades, occasionally spending nights in a homeless shelter. He had no known family or health care proxy agent. He presented with trouble swallowing and was found to have a malignant mass. The recommended treatment was surgery, radiation and chemotherapy.
When the patient heard what treatment would entail, he said he had had enough and wanted to leave. He became increasingly withdrawn and
uncooperative, refusing to take medications and pulling the bed covers over his head to avoid interacting with the care team. He was interviewed by psychiatric services, during which he gave vague answers to some questions and declined to answer others, leading them to conclude that at that time he lacked the capacity to make decisions for himself and should not be allowed to leave against medical advice (AMA).
Over the next few days, the nurses caring for him were able to coax him to speak up, and he complained that the psychiatric assessment was incomplete because “they haven’t lived my life.” When asked to explain, he said that he had lived on the streets for years and that it was his right to return to the streets without treatment. He said that he hadn’t walked out of the hospital yet because he didn’t like to get into conflicts with people, but that he was getting frustrated by the delays and was ready to leave.
An ethics consultation was requested to help address the uncertainty the staff felt about the patient’s ability to understand his medical problem and
treatment and to make his own choices.
When a homeless patient wants to leave the hospital AMA and return to living on the streets, the clinician often feels ethically torn. On the one hand, clinicians have an ethical obligation to prevent harm from an unsafe discharge. On the other, adult patients with decisional capacity have the right to accept or refuse medical treatment based on their own values and priorities, even if their choices seem ill-advised from a clinical standpoint. Ethical principles of beneficence (doing good) and nonmaleficence (avoiding harm) come into conflict with autonomy (respecting patient choice) in these cases.
Managing these situations requires an understanding of the personal values and priorities motivating the patient’s choices. This information may not be forthcoming for a variety of reasons. Homeless patients are often reluctant to discuss their housing status or other details about their lives out of fear of being discriminated against or receiving suboptimal care. They may be embarrassed that they don’t have money for medication or transportation, or feel judged by providers who don’t understand street culture (Greysen et al. 2013).
Such concerns may inhibit open communication with caregivers, making it difficult to assess the patient’s true reasons for declining medical treatment.
When a patient’s inability or unwillingness to participate in care results in a determination that he/she lacks decisional capacity, we generally rely on a surrogate decision maker – typically a family member or friend who knows the patient well — to make decisions on their behalf through the exercise of substituted judgment. If the patient doesn’t have an adequate surrogate, as was the case in this scenario, BWH policy recommends trying to construct, as best we can, a “synthetic” judgment of who the patient is. This is done by collecting information from those who have been part of the patient’s life and who can describe past behaviors and choices. Through this process, we can begin to answer the questions that reflect respect for patient autonomy: What would this person want for himself? What would be consistent with past choices that have directed his life? (BWH Policy 5.5.6).
The ethics consultants facilitated this process with the care team. They spoke with the patient’s primary care physician, who felt him to be capable of making decisions during their interactions, and who related his past resourcefulness in accessing medical care. They also contacted staff at the shelter and learned that the patient preferred the streets to the shelter because of the friendships and supports he had in his homeless community. As an example, the staff recalled one occasion where he turned down permanent housing in a nearby town after they arranged it for him.
During the ethics consultation, the team reviewed this information, together with their own impressions, and reached the following conclusions:
It was now clear that the patient understood his diagnosis but wasn’t sure he wanted to go through the treatment process. His withdrawing behavior was a way of coping with fear and he needed time to process the information.
Input from those who had known the patient for years demonstrated that his values over the course of his life had been to prioritize his independence and social relationships within the homeless community over health care and housing. His current requests to leave the hospital were more in accord with these values than aggressive medical treatment and prolonged hospitalization.
Based on this reasoning, the team agreed that reasonable ethical care of this patient would allow him to leave as he was requesting, with encouragement to return to the Brigham or another hospital if needed and to follow up regularly with his primary care physician.
During the Ethics Committee discussion of this case, the committee members cautioned against assuming this patient’s story was representative of every homeless person’s story. Mental illness is prevalent in this population, and for those who see the world through the distorted lens of their disease, the “choice” to live on the streets may not be a real choice until they get the clinical help they need.
Supporting Policy and Literature
BWH Policy 5.5.6: Medical Decision Making for Patients Lacking an Adequate Surrogate Decision Maker.
Greysen S et al. “Improving the Quality of Discharge Care for the Homeless: A Patient-centered Approach.” J Health Care Poor Underserved. 2013: 24(2); 444-455.
We welcome your feedback about BWH Clinical Ethics Case Review! Please email your questions and/or comments to BWHEthicsService@partners.org. To learn more about ethics consults, visit the Office of Clinical Ethics website.
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