Dying in Community: Being Present in the Hour of Death | Sojourners

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The illustration is of a dying Black man in a hospital with a doctor at his side. The man is also holding the hand of a woman.

Illustrations by Kalima Alain

Dying in Community: Being Present in the Hour of Death

Reflections from a palliative care doctor in Rwanda.
By Christian Ntizimira

I LIVE IN Rwanda, a beautiful East African country also called the Land of a Thousand Hills. We have a saying here: “When you are well, you belong to yourself, but when you are sick, you belong to your family.” But my first trip to the United States taught me that culture matters, particularly in the context of end-of-life care.

In a palliative care education and practice course at Harvard Medical School, I learned the principle of patient autonomy — that individuals have the ultimate authority to make decisions about their own health care. Patients are “in control.” But while shadowing my mentor at Massachusetts General Hospital, I noticed photos of family members in patients’ rooms. I remember asking, “Where are the people who are shown in the photographs?” I now know that this may be an attempt to recreate a family or to provide a last chance to reconnect with life, but all the people I saw in the pictures were alive — why were people trying to create an illusion of family when the family exists?

I asked my mentor, “How can we bring back those people from the photos to the room?”

Of course, I came with my bias and an African perspective on end-of-life care. Here, decision-making is based on patient autonomy and community responsibility, because one aspect does not exclude the other. There is synergy between them.

In Rwanda, there are no photos in the patient’s room. Instead, there are people.

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The illustration shows the August issue of Sojourners magazine which depicts a doctor at the death bed of a dying man. The dying man is black and wearing a green shirt and holding the hand of someone else who is not in the image.
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A black and white photo of a bald Black man with a goatee, smiling at the camera

Christian Ntizimira, a physician and the author of The Safari Concept: An African Framework of End-of-Life Care, is founder and executive director of the African Center for Research on End-of-Life Care in Rwanda.