(This blog is from the Summer of 2016.)
Many of the patients I meet are actively dying—some from HIV/AIDS, others from cancer. Such is the nature of working in a hospice in a developing country. I have spent the past month in Uganda working at an organization called Hospice Africa, whose mission is to serve as a model of palliative care in Africa and work for the expansion of palliative care services across the continent.
One aspect of Hospice Africa’s model of palliative care involves going on home visits to see patients who are too ill or too poor to make the trip to one of their three hospices in Uganda. I have had the honor of accompanying the clinical team on a few of these home visits, and I have witnessed a steadfast insistence on life, even in the face of impending death.
However, this insistence on life does not imply an adversarial relationship with death and dying. Rather, it stems from the realization that dying—and even death—is a natural stage in the course of life, and the dying process can be lived well, fully, beautifully. A phrase embroidered on Hospice Africa apparel is telling: “Adding life to days, not just days to life.”
As medical interventions have advanced, there are more and more ways to simply add days to life. Sometimes, a narrow focus on adding days to life overpowers considerations of the patient’s quality of life. I do not say this to discredit modern medical marvels; I am in awe of the vast number of medical problems the modern-day physician is able to overcome. However, I do think that it is important to weigh the costs of intervention against the benefits. If a novel treatment might add days, weeks or even months to life, but that additional time is filled with pain and exhaustion, is the treatment preferable to palliative care that ensures the patient is comfortable and pain-free as she approaches death? I would argue that it is better to manage pain and provide psychological and social support to patients as they prepare to enter their last act of life.
This is precisely what Hospice Africa does so well. In a nation that has been slow to benefit from medical advances (there is only one radiotherapy machine in the country, and it broke this past April, leaving many cancer patients without treatment), there are fewer ways to add days to life. As a result, the focus shifts toward adding life to days.
The interactions between social workers, nurses, and patients during home visits are a beauty to behold. Somehow, in these tiny shared spaces, laughter and companionship enter and grow. One moment, a social worker will tell a joke, and the room will erupt with laughter. The next moment, a nurse will gently rest her hand on the patient’s hand, and the room will become silent in a moment of communion that transcends words. In addition to medical and physical issues, the team makes sure to ask about social and psychological factors as well. They will ask a caregiver what the most difficult aspect of caring for their loved one has been, and how they can support the caregiver. They will ask a patient how their disease has affected their spiritual life. They will ask if any friends or family members are willing and able to help the patient in any way. Hospice Africa employs a truly holistic approach to patient care that works to fill the patient’s last days with love, joy, and companionship—the very things that make life lively. This, I believe, is how a good death comes to pass.