This post, written by Dr. Randi R. Diamond, is in response to a series of discussions about ethical dilemmas in global health, with responses from one global health leader in the Global South and one in the Global North. Please leave us your feedback in the comments section below, and send us ethical dilemmas you would like to see discussed, or your responses to those already posted.
Compiled by Dr. Majid Sadigh, Trefz Family Endowed Chair in Global Health at WCHN and Director of Global Health at UVMLCOM, and edited by Mitra Sadigh, Editor of Global Health Diaries.
I have been following the excellent entries in the Global Health Diaries on Ethical Dilemmas in Global Health. I am currently here in Uganda seeing palliative care patients and wanted to respond to a recent case that others have written about, but from the perspective of a palliative care physician.
In regard to the first ethical dilemma in which the visiting student watches a patient endure spasms while approaching a death that could be prevented by a drug that is unavailable and/or unaffordable: Involving the family in a discussion and helping them make an informed decision is an ideal approach to this issue. However, doing so may present the additional challenge of communicating essential information in an understandable way. ICU and palliative care treatment options should be presented. It should be emphasized that palliative care, while having a different, perhaps less desirable outcome than the curative intervention in this particular case, is not in any way an abandonment or a failure of care but rather an alternative form of care and caring in which the patient’s comfort and quality of life continue to be highly valued.
Honesty and reassurance of continued care in the ICU or elsewhere may help the family cope with what must be an unimaginably difficult decision for them to have to make, and will likely help build trust between the family and the healthcare worker. Discussing and modeling good communication, the techniques and skills of shared decision making, the value of support for the family’s decision and struggle, and the potential therapeutic benefits of being there for the family and of symptom management in the face of an inability to select the life-saving option will undoubtedly leave a strong impression on the visiting medical student or resident and will serve him or her well throughout his/her medical career.
While lack of knowledge about palliative care in the public domain may influence current cultural norms, there is an active campaign by the African Palliative Care Association, based in Kampala, to broaden the understanding of palliative care among the public and medical professionals. As such, it is important to clarify that palliative care should not be thought of as a second-rate alternative appropriate only for dying patients. Rather, palliative care is focused on symptom management as well as honest and compassionate communication, and may be delivered in different situations in concurrence with curative treatment in an effort to alleviate patient suffering from disease and treatments. It is care directed at the whole person that extends to include families, thereby providing a framework for considering the impact of the recommended treatment on the well-being of both patient and family.
In contrast to the idea that palliative care may lead to a perception of insensitivity among physicians, most families, once familiar with palliative care, are appreciative of the efforts made to help the patient and the family, even when their loved one dies.