Palliative care (PC) advocates are always trying to get more traction in the global health narrative, which systematically sidelines our equity concerns about access to essential opioid medicines and PC services. The polite lack of interest on the part of global health elites is unsurprising given their fixation on “reducing premature mortality” and “saving lives,” something PC declares itself powerless to affect. Governments construe the right to health as prevention and treatment of disease, giving little if any thought to health system planning for population level consequences when prevention and treatment are unavailable (for the vast majority of the world’s poor) or ultimately fail to produce the desired results by saving lives.
Not only is palliative care guilty of failing to prevent or control disease, the discipline admits its powerlessness over mortality itself. The World Health Organization definition says PC “intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.“ Paradoxically, this recognition is the source of palliative care’s power and underlies our offer of interdisciplinarity as the best clinical bet for people facing existential crises such as serious illness and death. PC’s interdisciplinarity produces the distinctive polyphony of palliative care teams, which is echoed in the public voice of advocacy.
Interdisciplinarity in the face of serious distress and unrelieved physical pain has the power to address both the conditioned and unconditioned domains of existence. Attention to the unconditioned, or unattended spiritual dimensions of distress, accessible when physical pain is properly managed, can relieve the anguish of patients and families whose hopes have been pinned on treatment and cure. Monastics’ prayer for a “holy death” refers to the impression our “passing” indelibly leaves with those who attended our final weeks, days, and moments. Palliative care can help us to leave them a gift, rather than traumatic memories.
St. Benedict transitus.
Henri Nouwen says, “Very often people’s lives are destroyed, harmed, or permanently wounded by the deaths of their relatives or friends. We have to do whatever we can to avoid this. When we are near death what we say to those who are close to us, whether in spoken or in written words, is very important.”
Bread for the Journey, by Henri J.M. Nouwen, ©1997 HarperSanFrancisco.
I would add, not only what we say but how we are, the kind of space we hold for the dying person and their family. There is a grace in acceptance of death and a desire to cultivate the garden of one’s dying as a way to bear fruit that can transform the lives of others. That can often come from the accompaniment offered by volunteers, clinical teams, and family members.
Photo by the author
Caryl Houselander said, “To try to avoid suffering is useless, for the seed of it is in the human heart…If it is useless to avoid, or to try to avoid, suffering, if suffer we must, it seems at least as reasonable to do it well as it is to speak well or to walk or sleep well. By suffering badly I add to the common burden …By suffering well I lighten it.”
Palliative care helps patients and their family caregivers to suffer well. At the health system level, it lightens the common burden. PC admits its powerlessness to change the outcome, but not the process or experience of serious illness and eventual decline. Acceptance of the outcome generates the power to transform the experience, to relieve the suffering. This entails courage to approach the unknown, the apparently fraught and threatening periphery, with truth telling, skill, and confidence supported by a team of like minded colleagues.
Interdisciplinary palliative care teams (IDTs) must include advocates! Our resilience and sustainability will eventually win us a seat at the global health table.
The featured image shows an IDT on a home visit in Addis Ababa led by Dr. Anne Merriman, Hospice Africa Uganda founder, with a nurse Bernadette Basemera, and Medical Officer from Hospice Ethiopie Dr. Ephrem Abaathun, with a patient and her family. Photo taken by the author and used with permission.
Global Palliative Care Blog 