(The author is the CEO of Thoughtful Transitions, an ordained minister and educator, and serves as director of program development at the International End of Life Doula Association [INELDA]. She is committed to challenging the societal norms that make death a forbidden topic. – Jay Niver, editor)
Grief, loss, and dying are a part of life – for all of us. Yes, we all die. Influenced by many factors, including culture, religion/spirituality, previous history with loss, and circumstances surrounding the death, our conversation around death, and how we grieve and mourn will vary from person to person. Other considerations – such as racism and systemic oppression and anticipatory grief, generational trauma, disenfranchised grief, and a lack of social support – also impact our dying and grieving process.
As a result, the COVID-19 pandemic has presented unique health and social challenges for all of us, especially for Black Americans. Facing illness alone during a global health crisis and the racial epidemic is complex and challenging. Making matters worse is our society’s refusal to acknowledge the medicalization of dying and the rising costs of healthcare, deathcare, and dying. It costs a hell of a lot to die. I would say that there are costs associated with living for those with melanated skin, but I suspect that many know this already.
Death Positivity
Death positivity – the overarching term covering the social and philosophical ideology encouraging – perhaps empowering people to speak about death and dying – has become very popular. However, while deathcare, death positivity, and death doulas are becoming more mainstream, to consider a “good death” for Black people of African descent, we must invest our time, energy, and resources into ensuring a good life for those same people. Without the latter, the former may not be entirely possible. Even more challenging is that most of the prominent voices in death care are white.
While many prominent voices are white, this work is not new for people of color and indigenous people. We have been doing this work since the beginning of time. One of the challenges I face as one who is fully invested in the life (and death) of Black folks is watching tone-deaf, culturally insensitive, and socially unaware people enter in with a one-size-fits-all approach to deathcare. That approach completely discounts the many intersections that each locates us.
Often, this approach disregards the lived experiences of Black people – experiences that impact end-of-life decision-making. For example, are they Buddhist, Muslim, Jewish, Christian, or agnostic or atheist? How does access affect this individual? How has racism, classism, or any of the other injustices one might name impacted the life of the dying?
Navigating a healthcare and deathcare system shaped by whiteness can be disheartening. Despite the many diversity, equity, and inclusion initiatives adopted by numerous healthcare systems, Black life is still disregarded, Black death is still ignored, Black grief is still silenced, and the Black griever is still shamed.
Knowing the unique and unparalleled experiences of Black people specifically, and the global majority in general, how might one approach the concept of “a good death?” If a good death considers compassion, access, and agency, I wonder how one might realize that when one has not experienced these things leading up to their last breath.
Color-blindness and Racism
Having served in various roles – from an ordained minister to chaplain, to death doula to grief coach, to name a few – I have witnessed how many caregivers in general and doulas specifically have failed to consider the whole person. Instead, they’ve assumed a “color-blind” posture, believing that we are “all human” and therefore have the exact basic needs.
Yes, we are human. Our worth is inherent in our being. Color-blindness is not a helpful approach to providing care – it is a form of bias and erasure. One needs to see differences and have cultural humility, compassion, and an awareness of one’s own biases.
Advocacy
Beyond addressing biases, those who consider themselves death positive must question their commitment to the life of those they serve – their living and breathing. How does our death work overlap the dismantling of systems that reduce Black life to soundbites? How does our death work help reduce funeral industry costs, provide awareness about green burials, change the conversation in the hospital room about pain management, etc.? As death doulas become more and more popular, space must be given and taken to help shape death positivity, well, more positively.
Extremely important conversation.
This column was really important for my own thinking about death and dying. Of course, the Black experience is going to be in many ways very different than the experiences of the majority culture. For myself, although I have been active in the right-to-die movement for many years, I have been reluctant to bring up this subject with my Black friends and neighbors, but thanks to Rev. Jamie Eaddy Chism’s thoughtful essay, I will try to do better, to be more open and also more sensitive to their needs and values. Thank you, Rev. Chism! Thank you for helping me see the bigger picture and for helping grow my awareness. I know from experience that doing better always involves seeing more clearly, and I am grateful for this column.
If I had not taken a lot of cultural anthropology way back when I was in college, I think I would have less understanding that we are not just multi-colored but also multi-cultured in this country. I live in a heavily Hispanic part of the country, did not grow up here, and it was quite the adjustment to embrace the culture, which I ended up liking better than the one I grew up in. Recognizing differences in cultures that may (or may not) go with different racial origins is mandatory to providing meaningful services across the board, in life as well as death, to all.
If life still can’t be color-blind, surely death should. Where is empathy? Loss is painful for all, no matter where they come from, so let’s honor it and be part of the grief of our common community.
I appreciate the way Rev. Eaddy Chism ‘s column raises awareness of our readers and provokes their thinking on end-of-life care that is “tone-death, culturally insensitive, and socially unaware.” Hopefully, greater awareness will lead to actions to confront and challenge the unfairness and inequality she so compellingly describes.
All Americans, including Rev. Chism, should get down on their knees and thank Whatever or whomever has made America the freest, richest, most powerful, most generous nation on Earth! I am greatly concerned to read what she, an obviously intelligent, educated woman, has written. Because I am 82, I lived during segregation, experienced integration, and am witnessing the pendulum swing much too far to the left in atoning for our past sins. Now the tail is wagging the dog to a ridiculous degree that must soon correct itself. When that happens Blacks, like the rest of Americans, will be required to obey our laws, accept the grades in school that they earn, and cease to be shown preference in employment and promotion just because of the injustices experienced by their great-grand parents. I was an infantry company commander in Vietnam where I fought for the freedom of twenty million South Vietnamese. More than forty of my men were wounded and five died. The first to die was Black, the second was Puerto Rican, and the last three were White. I am from the Deep South, but after I returned home I quietly told my mother and father that if we were good enough to go half-way around the World to fight for someone else’s freedom, we were all good enough to enjoy it here.
My final thought to Rev. Chism is that racism and sexism have very little to do with an ‘ism but rather with how those who have power treat those who do not.
Now, let’s all continue to work together so we are able obtain the end of life we prefer, even though that right will not come soon enough for all of us.
Thank you, Mr. Morgan . . . for your comment and for your service.
As a civil rights activist in the 1960’s and many years as an advocate of human rights in the Peace Corps, I feel that until there truly is a level playing field, the struggle for racial justice isn’t over. A major recent study found that end-of-life care challenges are no exception: ” Despite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice care and the intensity of end-of-life treatment remain.” See: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2769692
This is a response to Mr. Wederspahn’s comments about a continuance of racial disparity during end-of-life treatment as stated in the Evaluation of Racial Disparities Study. No disparities in that study were attributed to racial discrimination but rather to client education and preference. It stated, “Blacks undergo more intensive treatments than Whites.” Racial disparities are not necessarily the result of discrimination. It is incumbent upon those making a claim to provide the examples and proof.
I believe that ALL lives and deaths matter. I am a Certified Thanatologist, End-of-life Doula, and I’ve been a hospice volunteer for 17 years. I have never had a black patient. It’s not because I refused, just the opposite. I love meeting new people, whatever their age, gender, color, or nationality. However, Blacks often eschew end-of-life services, so I rarely encountered a Black person in hospice. Not surprising since only about 8% of those enrolled in hospice are Black. Often, they mistrust the medical system (not without cause, Tuskegee comes to mind) that they mostly don’t partake in any offered help, including hospice or MAID. I don’t think Medicare is racist; end-of-live services are open equally to all who qualify. You can’t force people to access the services open to them.
I meet every patient where they are and feel blessed and honored to act as a death midwife to help them crossover to the next stage in their journey. I love to hear their stories; every person alive has a story to tell, and I remember all of the souls entrusted to my care. I once had a 50ish Vietnam Vet who had won the medal of honor because he drove a general through enemy territory. He was humble and grateful for his service, saying it was no big deal. I sang show tunes with a lovely lady dying of cancer who had starred in her college musicals. I read the Book of Mormon to a woman who had not read it in decades. She wanted to reconnect with her religion before she died. If any of those people were Black, Jewish, Hispanic, Asian, or any other ethnicity, I would have traveled the road with them wherever they wanted to go. Everyone dies; maybe let’s strive to help everyone have a good and dignified death, one that honors their culture and experiences, and take racism out of the discussion.
You miss the point: As much as you have done for the dying, in all those years you have not had one Afro-American patient?
The point is distrust, of the medical system, of white people telling them what to do, of a white person sitting at the bedside when it should be a person of color. Why not work to recruit and train African American, Asian, and Hispanic doulas to help those people whose cultures they share over to the other side?