Infectious Disease Advisor: From a practical point of view, how do you plan to implement this study? Do you expect any challenges to getting participants for the study?
Dr Smith: This study is the result of a tremendous team effort. To implement Last Gift, we involved many people with different areas of expertise: psychologists, ethicists, and physicians involved in long-term care facilities and hospice, as well as the HIV community. And of course we also need pathologists on-call 24/7 and basic scientists to optimize tissue collection and storage and to perform all laboratory experiments. It is important to consider all the ethical aspects of performing end-of-life research (in particular, the role of altruism and vulnerability in the decision-making process). It is also crucial to recognize the role of family members and other stakeholders in the decision to participate in end-of-life research.
In preparation for this study, we interviewed 12 HIV-infected individuals receiving hospice services, who were referred by their primary providers at the Owen Clinic, which is the University of California, San Diego, primary HIV clinic, or the San Diego Veterans Affairs HIV clinic. All these individuals expressed a desire to be able to “give back” in some way at this time near the end of his or her life. Each individual expressed a strong interest in participating in research aimed at curing HIV, often citing such participation as a “gift” to their friends still living with HIV.
Infectious Disease Advisor: How do you think a clinician should start this conversation with his or her patients who have been diagnosed with a terminal illness?
Dr Smith: Every patient is different and has their own grieving process for their terminal illness. It is my experience that when a patient is offered an opportunity to participate in research at the end of their life, they often need a chance to digest the information before making a decision. They also want to discuss this with their families and friends. The first time I approach a potential participant, I start by saying that there is a study that they may be eligible for, and then I explain the rationale for the study. It is sometimes hard to explain why end-of-life research might be valuable to the world, but not for the study participant personally. But it is through this process that altruistic people often become engaged. During the explanation, I ask them whether they have questions, and depending on their questions and level of engagement, I continue or I stop. If the individual is receptive to the idea, I talk about study procedures, and again stop to ask whether they have any questions. If an individual does not seem engaged in the idea, I tell them that I will check in with them again at our next visit. I also ask them to write down any questions they may have after they leave so we can discuss them at their next visit.
Infectious Disease Advisor: Do you think this end-of-life research could be extended beyond the field of HIV?
Dr Smith: Absolutely. In our current research, we found that at the end of their lives, many people are altruistic. They want to give back to humanity, even though it might not benefit them at all. This goes for people who are uninfected and for people who might have cancer or heart disease. They are interested in doing something that does not affect them at all but might affect their loved ones or friends (such as those with diabetes, muscular dystrophy, or multiple sclerosis). So, in that setting, allowing people to participate in research to give 1 last gift back to humanity is a powerful and empowering thing.
Infectious Disease Advisor: Thank you so much Dr Smith. Do you have any final thoughts to share with our readers?
Dr Smith: As I tried to explain this study to my mother, she said that it was “very morbid,” and others have voiced similar thoughts. But, at the same time, once people start thinking about it (including my mother), if they were in the same situation or when I talk to people who are in that situation, it always comes down to, “Would I be willing to sacrifice part of my last bit of time and comfort to help someone going forward?” What I have always been amazed at is that almost 90% of people, even in our studies, say, “Yes, that is something I’d be interested in doing, even though I might not get a benefit from it.” What that tells me is that we might be on the right track for science, and it also gives me a lot of hope for humanity going forward.
Click here to read part 2 of this series, in which Dr Gianella Weibel talks with Jeff Taylor, community activist and long-term HIV survivor, about ethical concerns and practical barriers in end-of-life research and how the HIV community will embrace this type of research.
Click here to read part 3 of this series, in which Dr Gianella Weibel talks with Anthony B, a patient with HIV and end-stage amyotrophic lateral sclerosis and the first participant in the Last Gift study about his experience in this innovative research study.
Sara Gianella Weibel, MD, is an assistant professor of medicine at the University of California, San Diego, Center for AIDS Research.
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