Dissecting “Disparities” in End of Life Care
The field I practice in, Hospice and Palliative Medicine, is almost always credited to Dame Cicely Saunders, as the “founder of the modern hospice movement.” Saunders was a nurse in England who was inspired to change what she saw as the culture of care for dying patients. Within the rigid western medical system, she worked to abolish the prevailing thought process: that cure is the only meaningful goal of medical care and that patients who could not be cured were a sign of failure. She opened St. Christopher Hospice in London in 1967, a place where dying patients could receive the same level of care and attention from a medical team that those seeking cure were receiving.
Cicely Saunders’ work is important for the field of Hospice and Palliative Medicine, but it is not the whole story. Born of this work, the modern hospice movement remains one that is rooted in white supremacist culture and is catered toward white cultural values. A quick google image search of the term “palliative care” or “hospice” quickly points this out. The images you see are almost all of white elderly folks, being cared for by white medical professionals. When Black and Brown faces do appear in the search, they are most likely in the role of caregiver. Unfortunately, these google search results match the reality of what patients in hospice look like. Of all patients enrolled in hospice in the United States, only 14% are people of color (compared to 20% of the population) [1]. Many studies document lower rates of hospice use for minoritized older adults than for whites across diagnosis, geography, and settings of care. Importantly, there appears to be higher rates of hospice disenrollment for Black patients than white patients [2]. Relatedly, compared to whites, minorities are more likely to die in the hospital and more likely to receive intensive aggressive care in the last six months of life [3].
In my field, the current debate is: Do these differences (lower utilization of hospice, higher utilization of aggressive care at end of life) come from different cultural preferences or are they result of racism on the part of the health care system? I believe that this “either/or” debate is missing the point. Both may be true (definitely the second one), and neither side provides a clear path to justice.
On the one hand, when we consider differences in location of death as a disparity, we are assuming there is a “right” place to die. Perhaps there is something about the culture or collective values of minoritized populations that leads to these populations being more likely to choose care at the end of life that is more aggressive. The vision that many of us who work in healthcare hold up as a “good death” is informed by the white, western dominant culture of medicine. We often assume patients and families will have the priorities of being at home, disconnected from tubes, lines, machines, surrounded by family as they are dying. Where did these priorities come from? Why do we assume that these are priorities for everyone? For some, perhaps of higher value when they are approaching the end of their lives is a sense of knowing they tried everything they could to preserve life, even if this means dying in an ICU. Or, maybe the sanctity of life is considered differently, such that all medical decisions should be aimed at keeping a person alive as long as possible. For some, perhaps a value of avoiding speaking or planning about care at the end of life predominates. I have seen each of these values rise to the top for patients and families I care for, within and across culture and race.
However, attributing differences in care at the end of life to “cultural differences in preferences” (even if aspects of this are true) is failing to explicitly name and address the racism that occurs in healthcare for Black and Brown patients and their families. As we discussed in class, Black patients are far less likely to receive adequate pain control. Recent surveys of US medical students continue to show that incorrect beliefs about racial differences in pain sensation and response to opioid pain medications persist and permeate widely [4]. Bereaved family members of Black patients who died are less likely to be satisfied with the quality of end of life care and communication their loved one received [5]. Perhaps most importantly, the long history of medical experimentation and exploitation of Black and Brown, as well as the ongoing daily acts of racism in our heath care system means that we (as health care providers) have not earned the trust of our patients and families who are impacted by this history of medical racism. Without trust, can we truly engage in an honest conversation about what is most important, meaningful, and valuable as you approach death? We as healthcare providers have work to do to dismantle the system that has led to this injustice.
Ultimately, I worry that asking where the root of the differences lie in end of life care is the wrong question altogether. Full stop, our system for caring for dying patients is firmly rooted in our white supremacist healthcare system and society. I think the question we all should be asking instead is: What would a system of care look like that is built by and for all of us?
References:
1. “Improving Palliative Care for Cancer” at NAP.Edu. doi:10.17226/10149
2. Johnson KS. Racial and Ethnic Disparities in Palliative Care. J Palliat Med. 2013;16(11):1329–1334. doi:10.1089/jpm.2013.9468
3. National Center for Health Statistics (US). Health, United States, 2010: With Special Feature on Death and Dying. National Center for Health Statistics (US); 2011. http://www.ncbi.nlm.nih.gov/books/NBK54381/
4. Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci. 2016;113(16):4296–4301. doi:10.1073/pnas.1516047113
5. Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53(7):1145–1153. doi:10.1111/j.1532–5415.2005.53357.x
