A Look Inside the Just-Released Second Edition of “Finish Strong”

June 7, 2023

The following is excerpted from “Race and Culture Matter,” a new chapter in the second edition of Barbara Coombs Lee’s original 2018 book, Finish Strong: Putting Your Priorities First at Life’s End,

The Way Ahead

We have a long way to go before Americans of every race and ethnicity are in charge of their own end-of-life care and can tailor it to meet their individual beliefs, values and priorities. Our society is just beginning to acknowledge and understand the overwhelming disparities in end-of-life care among historically disadvantaged communities. Every person and every part of the healthcare system has a part to play bringing these realities out of the shadows, instituting vital discussions and effecting systemic change.

On the provider side, the racial justice protests of 2020, and a strained healthcare system during the pandemic, brought new awareness and new urgency to rectifying inequalities in healthcare. A growing number of hospices are launching or investing more resources in diversity initiatives, with many assigning it top priority. As with so many cultural advances, relationships are key, so hospices across the nation are building partnerships and enlisting participation among communities of color in their locales. Hiring more diverse and bilingual staff is also part of their strategies for inclusion.

Physicians and medical systems, too, must change. Currently many people in historically underserved communities do not have a primary care physician. They obtain care through emergency departments or urgent care clinics. This tends to funnel patients into high-intensity treatment settings, irrespective of whether invasive treatments are appropriate to the status of a terminal illness or personal preference.

Among policies to increase the supply of family practitioners are incentives like student loan forgiveness in exchange for practicing in an underserved community. Similarly, regulators could expand practice guidelines and enhance deployment of nurse practitioners and physician assistants in underserved areas. Expanding telemedicine could make primary care more widely available. Adding incentives to increase the number of people of color who pursue careers in healthcare is also important.

Post-graduate education for medical practitioners increasingly includes training to compensate for their inherent bias and build cultural sensitivity. One hospice leader recently published an open letter to his physician colleagues. “Simply acknowledging our own biases and knowledge gaps is a powerful place to start,” he wrote. “Then, address those gaps with compassionate curiosity. Learn about where your patients come from, how their history may inform their perception of healthcare and hospice, and how their generational status and inter-family dynamics may intersect with their national origin or racial or ethnic community.”

Through all such efforts, diverse communities may acquire access to better information about advanced and terminal illnesses, better options for care, and better opportunities to prepare their families for the inevitable sadness of dying. In the end, decisions will come down to reckoning with the inequities and injustices of the past, overcoming the temptation to deny that death comes to all, and making the best decision at the time, for oneself and one’s family.

Though a person may be “Black and wary,” the responsibility to make choices for themselves remains.  Damon Young explains this in his New York Times essay Black and Wary, I Got Vaccinated Anyway, about choosing to get the COVID-19 vaccine in spite of his deep distrust of the American institution of medicine. He writes, “Existing in America while Black requires a ceaseless assemblage of negotiations and compromises. Even while recognizing the anti-Blackness embedded in society, participation is still necessary … .” Young looked to a “force greater than cynicism” to yield to the recommendation from institutions in which he otherwise had scarce confidence.

What is that “force greater than cynicism”? To James Baldwin, the esteemed philosopher of race relations, it is the force of authentic relationship with life, with death, to which we owe a responsibility, and from which we extract meaning and purpose for our lives:

Life is tragic simply because the earth turns and the sun inexorably rises and sets, and one day, for each of us, the sun will go down for the last, last time. Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves to totems, taboos, crosses, blood sacrifices, steeples, mosques, races, armies, flags, nations, in order to deny the fact of death, which is the only fact we have. It seems to me that one ought to rejoice in the fact of death — ought to decide, indeed, to earn one’s death by confronting with passion the conundrum of life … One must negotiate this passage as nobly as possible, for the sake of those who are coming after us.

James Baldwin, The Fire Next Time

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