Pulse
Dying Wishes
Bioethicist John Song talks about his work helping the homeless make decisions about end-of-life care.
When University of Minnesota bioethicist and assistant professor of medicine John Song, M.D., M.P.H., M.A.T., was a medical student in the late 1980s at the University of Pennsylvania, no one was formally teaching or studying biomedical ethics there. It wasn’t until he came to Minnesota for his residency and took a class from Arthur Caplan, Ph.D., who headed the University of Minnesota’s Center for Bioethics at the time, that he even knew that a formal field existed. Since then, he has done a fellowship in bioethics and carved out a unique research niche: the end-of-life needs of homeless people.
Song and colleagues are working on pioneering research that has established that the end of life is indeed a concern for homeless people. He is now leading a randomized controlled trial to see if homeless people will fill out living wills and whether those documents will have an effect on their care.
We asked him to share his insights about his work.
When did you become interested in this population and this issue?
I’ve always been interested because my parents volunteered with homeless people. My interest took off when I went to Baltimore for my fellowship. My clinical appointment was at Baltimore Health Care for the Homeless, where I took care of homeless people, many with HIV. Several of my patients were found dead in horrific situations. One was found in a car, one under a bridge, another in a low-income hotel. I realized that these individuals who were suffering from HIV were dying terrible deaths, alone, without any comfort, in great physical, spiritual, and emotional pain. I became interested in finding out how to provide a way for them to have a dignified death.
What have you set out to do with your research?
Our first project was a feasibility study to see if homeless people wanted to talk about death and dying. What we found from that study was that they had a need to talk about it. We didn’t have to prompt them much with questions. They’d just talk.
Did this surprise you?
It didn’t surprise me that they wanted to talk about it. It did surprise me that they’d be so interested in being involved in research. They wanted their voices to be heard not just by me and the other investigators. When we told them we wanted to publish their words in scientific papers, they were excited. They were also altruistic. They said, If my experience can help others, I’d be more than willing to talk to you.
Homelessness and the End of Life
The following articles describe what Minnesota researchers have learned about what homeless people think about death and dying:
Song J, Ratner ER, Bartels DM. Dying while homeless: is it a concern when life itself is such a struggle? J Clin Ethics. 2005;16(3):251-61.
Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Experiences with and attitudes toward death and dying among homeless persons. J Gen Intern Med. 2007;22(4):427-34.
Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Dying on the streets: homeless persons’ concerns and desires about end of life care. J Gen Intern Med. 2007;22(4): 435-41.
Ratner ER, Bartels D, Song J. A perspective on homelessness, ethics, and medical care. Minn Med. 2004;87:
60-2.
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What did they tell you?
People talked a lot about the care they wanted. But they also talked a lot about death and dying itself and their experience with death and dying. So many people had experience with it. They had lost close friends or family. A lot had experienced a death at a young age. A few lost both parents and ended up in foster care and then ended up homeless. We also saw people who saw a brother or sister die at a very young age. Those experiences seemed to set up a cycle of depression and despair that contributed to their circumstances. Nearly everybody had had a friend or two die in the last year. One had lost 13 friends in the last year.
Because so many homeless people don’t have family or people they feel close to to make decisions for them, they were interested in advance directives and living wills. These are people who feel alienated from family and friends, who don’t have a voice, who feel helpless.
What are you doing now?
Our third project is a randomized controlled trial to see if homeless people will fill out living wills and if doing so will have an impact on their attitudes toward health care and their worries about death and dying. The wills will be filed at area hospitals. Eighteen months down the line, we’ll go through medical records to see if any of the study’s participants were admitted or sick, and if their wills were or are being honored.
What do you think about the adage that a society can be measured by how it treats its poor?
I take that one step further. How society treats its worst off when they’re dying really reflects its values. If you don’t even bother to give a dignified death to an individual, it says something about a society. This is the time when everybody should have comfort and everybody should have some feeling of being worthy and needed.—Carmen Peota