During my sophomore year of college, I was thinking seriously about applying to medical school, but I was not sure if I would be able to handle working with dying patients. I decided to volunteer at a local hospice over the summer to confront that question as well as my personal fear of death.
While on various home visits however, I discovered a realm of end-of-life realizations that I had not encountered before; those of resilience, search for meaning, and quality of life. I still hold with me countless patient-interactions where, at the end of life, they mended relationships with loved ones, reconciled with God, or drastically re-prioritized how they wanted to spend the last months of their lives. Though there were conversations about the dying process, there were also many conversations about the important things in life, which I found to be meaningful. Although I still left with questions about death, I felt that I had found my calling in palliative care.
During my third year of medical school, I rediscovered my desire to work in palliative care after being assigned to palliative patients frequently. Towards the end of my third year, I decided to dedicate my research year combining my interests in global health and palliative medicine by working on a project, building and assessing indicators of palliative care development in Africa.
In order to do so, my mentor, Carlos Centeno, MD, PhD, University of Navarra, asked me to spend my first two months volunteering at Hospice Africa Uganda—one of the model hospices on the continent—as well as working once a week with our project collaborator: the African Palliative Care Association.
Upon doing so, I was moved by the nurses when going on home visits. They would bravely challenge the unpaved, difficult streets of Kampala—sometimes for hours at a time—to arrive at patients’ homes to offer words of comfort, relieving symptoms, and counseling the patient and their family.
The days were not without difficulty. I remember a 17-year-old orphan with rapidly progressive osteosarcoma that was unable to lift his upper torso due to the weight of the tumor located on his proximal humerus. I also remember a six-year old with a rare spinal cord tumor who was being taken care of by his 23-year old brother but without resources for treatment or care. Still, in those moments, the team was able to offer symptom relief to and be a presence for the families, who were emotionally distressed over their loved ones’ condition. Those conversations were some of the deepest moments I have experienced in all of medicine, and they have left me with much to reflect on, including the search for hope amidst suffering and the infinite importance of being a knowledgeable and empathetic presence for my patients.
These experiences also fueled my work over the past year in creating a comprehensive report of the state of palliative care development in African countries. The project was in partnership with the African Palliative Care Association (APCA), the International Association for Hospice and Palliative Care (IAHPC), the Arnhold Institute for Global Health at the Icahn School of Medicine at Mount Sinai, and the Institute for Culture and Society at the University of Navarra. Together, we have recently published the APCA Atlas of Palliative Care in Africa— the first comparative overview of palliative care in Africa in over a decade. The APCA Atlas can be used in advocacy efforts led by local experts to continue building palliative care resources and capacity in African countries. The indicators used in the APCA Atlas were derived from interviews with African palliative care experts, and the information was gathered through a network we built over the year of key informants in nearly 90 percent of African countries.
The APCA Atlas was launched at the 15th World Congress of the European Association for Palliative Care (EAPC 2017) in Madrid, where representatives from the World Health Organization, APCA, the Lebanese Center for Palliative Care—Balsam, among others, presented its release to various press agencies.
The APCA Atlas provides a benchmark from which future growth can be measured and provide a sense of accountability. Our hope is that the Atlas will inform advocates and Ministries of Health to provide accessible palliative care, making it available across the continent. In Africa, where access to treatments are limited and costs are major barriers to care, palliative medicine is even more necessary so that, at the very least, people can die with minimal pain within the comfort of their own homes.
When I mention my interest in palliative care to people, I find that many are often surprised and tend to label the field as “depressing”. But I have found so much meaning in the practice—despite moments of pain and suffering with my patients. My patient interactions fill me with joy and laughter.
I want to continue helping palliative care patients to find meaning at the end of life, because I have found meaning in my mine by holding their hand through the end of theirs.
John Y. Rhee, MPH, is a fourth-year medical student and Dean’s Scholar of Global Health at the Icahn School of Medicine at Mount Sinai. He is the Principal Investigator of the APCA Atlas of Palliative Care in Africa. He plans to specialize in Neurology and Palliative Medicine.