As we celebrate Black History Month, we are confronted with the ongoing injustice that African Americans are more than twice as likely to die from COVID-19 as our white counterparts. While some have treated this fact as if it was a new phenomenon, many of us know this is just another example of the disparities in health care outcomes that the Black community has historically and continually experienced.
Whether we’re wealthy or working class, we are often diagnosed later, live sicker and die sooner.
And we suffer more at the end of life, often from invasive treatments and lack of adequate pain relief. Our elders in nursing homes also receive feeding tubes at a higher rate and undergo more unnecessary surgeries in the final months of life.
Part of the reason African Americans are often overtreated at the end of life relates to our experiences being denied care by a racist health care system. We may ask for and receive far more intensive and invasive treatments at the end of life, because we fought for the right to receive care and we demand access to it. While this is understandable, it can also be counterproductive if it prolongs suffering instead of preventing it.
Systemic racism accounts for much of the problem, but we also have the opportunity to save ourselves from this overtreatment and the suffering that goes along with it, when we have the knowledge about how to plan for an end-of-life experience that is aligned with our values and beliefs.
We’ve all heard the phrase “knowledge is power,” and it is absolutely true when it comes to advocating for our care and our family’s care at the end of life. Although death is inevitable for all of us, there is often a stigma around talking about it at our dinner tables. We don’t talk with our family about what they would want when they are close to death, and we don’t bring it up with our doctors. My mother and sister passed away from ovarian cancer, and we didn’t speak about death until it was imminent, and therefore too late to know what their end-of-life wishes were and take appropriate steps with their doctors. In both cases, I now believe, planning ahead would have provided an easier and more peaceful death.
My family’s situation is similar to many others: Fewer than half of all African Americans have spoken with their families about their end-of-life care priorities, and only one in three has a documented advanced directive that ensures they get the medical care they want at the end of life. An advanced directive is a simple document that you can fill out online and give to your doctor. It provides peace of mind by explaining what health care you want to receive or decline if you become severely injured or terminally ill.
African Americans also rarely use hospice, a Medicare benefit that provides comfort care services for the terminally ill. According to the National Hospice and Palliative Care Organization, 76 percent of hospice beneficiaries are white, while only 8 percent are Black. There is a common misconception that choosing hospice means giving up hope. But this isn’t true. Those who use hospice experience less suffering, have more time with loved ones, and can have the dignified death we all want.
That’s why I am proud that the National Organization of Black Elected Legislative Women adopted a resolution at this year’s annual conference to advance education about end-of-life care issues like hospice and advanced planning; I also co-authored a bill last session to increase funding for that education in our own community.
Talking with our families about death and making a plan might seem difficult, but with the right support, the experience can bring families closer. These are important questions: What makes life worth living? What’s most important to us as we grow older? What do we want our loved ones to know when we can no longer speak for ourselves? And how do we want our final days to reflect the values and priorities of a lifetime? These conversations are a gift. Documenting specific answers to these questions will help protect your family from the confusion or conflict that can easily arise otherwise.
Talking about death won’t kill you, but not preparing for it can cause quite a lot of pain and suffering. Visit compassionandchoices.org/end-of-life-planning to learn how to start your own conversation.
Moran (D-Minn.), a member of the state House, represents District 65A, which includes parts of St. Paul. She chairs the Ways and Means Committee and is Midwest Region Coordinator for the National Association of Black Elected Legislative Women.