Valuing palliative care in global health

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Jillian Moore
Jillian Moore is a student at Harvard Medical School. She has worked in rural Mexico and in indigenous communities in Guatemala with Wuqu' Kawoq | Maya Health Alliance. She is currently a Doris Duke International Clinical Research Fellow in Guatemala. Her interests include gender, inequality and marginality, palliative care, and mental health.

Naomi, a single mother of seven from a rural community in the highlands of Guatemala, has endured terminal cervical cancer for some years. When she first fell ill she could neither eat nor rise from her bed and had to stop her work of selling homemade tamales by the roadside. Her oldest daughter left school to take care of the younger children, and her sons took on multiple jobs to cover the household expenses. When Naomi was finally diagnosed with cervical cancer, a surgeon from the United States visiting to do charity operations supposedly removed her uterus and the cancer; however one year later when her symptoms returned, Naomi learned that part of her uterus remained in her pelvis, containing a growing tumor. A health NGO took her into its care and has spent thousands of dollars on palliative radiation therapy to shrink the incurable cancer. The NGO continues to bring her medicines for pain and nausea and diapers to catch the urine that has leaked uncontrollably from her bladder ever since the tumor began to affect her urinary tract; they also provide her family with money for food and other necessities. Naomi will likely die of this cancer, and until then the NGO continues to support her and her family.

I heard someone argue that with the thousands of dollars spent on palliative radiation and symptom relief for Naomi, the NGO could have done Pap smears for thousands of other women to prevent this very disease. Indeed, those providing health care in poor settings often struggle with whether they should use their limited resources to prevent future disease in a population or to care for the individuals in front of them whose bodies are succumbing to known disease. It is a sad reality that with scarce funding pools and millions in need, we do consider these numbers. We hope that by preventing disease in many people and keeping them healthy, we may support them in living more meaningful lives, taking advantage of opportunities, and caring for their families. So we value programs that provide populations with preventive interventions like good nutrition, vaccines, prenatal care, cancer screening. We value acting now to try to prevent future illness and suffering.

Perhaps we could value palliative care for a similar reason, as its root goal is also to make life more meaningful.

Perhaps we could value palliative care for a similar reason, as its root goal is also to make life more meaningful.

Perhaps we could value palliative care for a similar reason, as its root goal is also to make life more meaningful. One may worry that helping people with terminal illness facing the ends of their lives does less for society than helping those who are younger with more potential. But sadly, in poorer areas of the world those with terminal illness are often not elderly. The young develop terminal illnesses that, perhaps curable in more resourced and cared-for areas of the world, are fatal without treatment. These young people, often parents, continue to care for their families until the ends of their lives just like Naomi: harvesting bananas, collecting firewood, washing clothes, and cooking meals despite pain and fatigue. They do not live isolated lives. They are intricately embedded in loving communities; and when they can no longer bear their suffering, family members quit jobs to stay home and provide care or quit school to earn replacement incomes. Palliative care is for an entire family and community, not just for an individual herself.

Another reason why we may struggle to quantify the value of palliative care is because palliative care is not universally defined. In the Boston hospital where I train, there is an inpatient team of physicians, social workers, and chaplains all specialized in palliative care. During my medicine clerkship, we invited the team to meet many of our patients and recommend how to best relieve pain or speak to families about transitioning from intensive care to “comfort measures only.” In fact this is why the palliative care movement began: communities in the US and UK organized in response to an ever-intensifying approach to end-of-life care in hospitals, hoping to reassign autonomy to patients rather than allowing ICU teams to unwaveringly battle death until the end (1). In broad strokes, the palliative care movement began to strip away unnecessary medical interventions.

However, for Naomi and others around the world (2), good palliative care may mean something different. Naomi endures an incurable cervical cancer because she never received the necessary medical interventions: regular Pap smears, a colposcopy, and the proper surgery. Through palliative care, the NGO that cares for Naomi adds medical interventions like radiation therapy to relieve suffering caused by their lack. But beyond these abstractions, palliative care may differ in other ways. For instance, if you speak with Naomi, you will learn that her body and disease are not her greatest worries. Each day she worries instead about whether her family has enough to eat and whether she is at peace with her Lord; and she especially worries about her children, their education, and what may happen to them if she dies – whether they would disperse or stay together. For Naomi, palliative care should involve ensuring her family has the food and resources they need and that her children will be well cared for.

As Eric Krakauer writes, “the structure and function of palliative care should be dictated by the call,” (3) and especially in settings of social instability and poverty, one must not only address symptoms of physical illness but also needs of the family, issues of food, work, housing and relationships. Consequently, to offer appropriate palliative care one must understand how people suffer and the resources and support already available to them. Perhaps the patient is surrounded by a supportive family and spiritual community, and all that medicine can offer him are opioids and anti-emetics. Or perhaps the patient is a single woman abandoned by her siblings and children who struggles to prepare her own meals, as four times a day she must do kidney dialysis to keep her body alive. What palliative care means for someone depends on her gender, family structure, community, religion, concept of suffering, the illness itself. We do not know what suffering means in every community or even for every person, and until we do we cannot quantify the value of a palliative care program to compare with the other numbers on our list.

All names are pseudonyms. 

  1. Kaufman, Sharon R. 2005. …And a Time to Die: How American Hospitals Shape the End of Life. Chicago: The University of Chicago Press.
  2. While I am most knowledgeable about the experiences of people in rural Guatemala, these arguments certainly apply to marginalized people all over the world, including patients in the Boston hospital I describe.
  3. Krakauer, Eric L. 2008. Just Palliative Care: Responding Responsibly to the Suffering of the Poor. Journal of Pain and Symptom Management 36(5): 505-512.