Americans have unequal access to the benefits of advance care planning
As COVID-19 death tolls mount rapidly, palliative care experts have urged Americans to have difficult conversations with loved ones about our end-of-life wishes. With death all around us, they have argued, it is now more urgent than ever that we plan for our deaths.
But in addition to having “the conversation” about end-of-life wishes, we should also grapple with deeper societal questions about who gets the privilege to plan.
It may sound perverse to suggest that a cancer diagnosis could be a fortunate event, but cancer compels people to anticipate death in a way that many never will. Most people will never have the opportunity to choose when, where and how they die because death comes unexpectedly, or the circumstances impede planning. If anything, my research on the desire for control at the end of life has taught me that death, all too often, ignores our plans.
But planning has nevertheless been a prominent focus of nationwide public health efforts to improve end-of-life care over the past several decades. Advance care planning is a broad term that encompasses talking with loved ones and health care providers, appointing a surrogate decision maker and recording end-of-life preferences in writing. Advance care planning enables people to legally document their wishes—for example, to avoid life-prolonging treatment if one is unlikely to survive or to attain a certain quality of life—in case they become incapacitated.
Such planning is particularly important for COVID-19 because of the vital use of mechanical ventilation among the sickest patients. Contemplating decisions about life-prolonging treatment in advance takes on heightened importance in a climate in which critical care resources are scarce and in which intubation puts health care workers at increased risk for contracting the virus themselves.
Americans do not engage equitably in planning for the end of life, however. Black Americans consistently utilize less advance care planning than white Americans. The reasons for this include worse access to medical care, especially culturally sensitive medical care; religious beliefs and cultural values that favor leaving decisions to God; and mistrust in medicine rooted in historical legacies of mistreatment, experimentation, and racism. Yet without the benefit of planning, Black Americans are less likely to receive care consistent with their preferences.
These inequities are all the more painful in a year in which police brutality and anti-Black violence brought the Black Lives Matter movement to the forefront of public consciousness. The tragic deaths of George Floyd, Ahmaud Arbery, Breonna Taylor, Elijah McClain and many other Black Americans highlight not only a foreclosed opportunity to engage with death as an object of anticipation and planning, but also, more fundamentally, a systemic failure of white Americans to acknowledge and uphold the value of Black lives. When the system has failed and shortened Black lives at every step, can we blame Black Americans for a reluctance to engage with the very same system to plan for death? From this perspective, advance care planning may seem tantamount to acquiescence.
This is not to deny that advance care planning and communication with loved ones are important and useful goals for all Americans, regardless of race or age. I teach a seminar for second year medical students on Death and Dying in America, in which I ask them to interview a partner or family member about their end-of-life wishes. I don’t want my students—many of whom have never experienced the death of a loved one—to confront the discomfort of speaking with patients about death before having done so at home. This year’s exercise was particularly poignant, as several students had family members in ICUs, or working on the pandemic’s frontlines.
But I also ask my students to think critically about who gets the privilege of planning: to examine the cultural values that underlie the expectation for choice at the end of life and confront racial inequities in advance care planning. When we advocate for more conversations about death and dying, let’s make sure that a piece of this conversation is facing the tough questions about who among us will get to plan and choose.
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