Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

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Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article HERE!

A researcher’s quest to make end-of-life care more equitable for Black Americans

Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.

By Leslie Walker, Dan Gorenstein

The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.

Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.

“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”

That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.

Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.

Research shows that, for seriously ill patients, high-quality supports like advance care planning, hospice and palliative care can alleviate suffering for them – and their families. Benefits include reduced pain and emotional distress, and fewer unwanted interventions.

But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.

A lonely road

This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.

“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.

She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.

“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.

Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.

A system that can’t be trusted in life or in death 

America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.

She recalled conversations with Black seniors who remember when their local hospital was segregated or when their communities were targeted with toxic waste sites.

“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.

Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.

Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.

A culturally incongruent model of care

Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.

But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.

“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.

But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.

The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.

“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.

A path toward more equitable care for the seriously ill

For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.

Some experts, including Bullock, are prioritizing collecting better data and diversifying the medical workforce. Others are focused on expanding access to palliative care, which offers much of the same physical, emotional and spiritual support as hospice without requiring patients to cease aggressive interventions. Research shows Black patients tend to prefer having more intensive treatment options available even at the end of life.

Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.

Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.

As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.

It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.

“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”

Complete Article HERE!

Race and ethnicity affect end-of-life care for dementia patients

— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” says Elizabeth Luth.

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Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.

Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.

“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.

“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”

To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.

In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.

The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.

The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.

“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.

“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”

Complete Article HERE!

Why don’t more people of color receive end-of-life care?

People from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

Brandi Alexander is the National Director of Community Engagement for Compassion & Choices.

by Brandi Alexander

Since New Jersey’s “Medical Aid in Dying for the Terminally Ill Act” took effect three years ago, not one Black, Hispanic, Native Hawaiian, Pacific Islander, or Native American state resident has used the law to gently end their suffering.

The question is: Why?

According to state Health Department reports, 89 of the 95 New Jerseyans who have used the law were white (94%), four were Asian, and two were of an unspecified single race. This racial disparity is similar to what’s seen in annual reports in eight of the 10 other jurisdictions that authorize medical aid in dying.

As to why white people are more likely to use this option, some suggest it is because white people mostly are the ones who want it. But that is not true.

A recent national survey showed that 62% of Black voters, 70% of Hispanic/Latino voters, and 65% of voters from all other ethnic groups surveyed would want the option of medical aid in dying if they became terminally ill, compared with 67% of white voters.

Reducing New Jersey’s 15-day waiting period, or waiving it when necessary, would improve access to medical aid in dying statewide. Other states such as California, New Mexico, and Oregon have reduced their waiting period; Oregon also waived its residency requirement. New Jersey should also authorize the state’s share of Medicaid to pay for medical aid in dying, as California, Hawai’i, and Oregon do. After all, New Jersey’s Medicaid program covers hospice care; it also should cover the end-of-life care that patients want, including medical aid in dying.

But these revisions alone would not be enough to reduce the racial gap.

Everyone deserves equal access to all types of end-of-life care.

The reality is people from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

As anyone whose loved one has entered hospice can tell you, it is an invaluable resource, which gives peace and comfort to the dying person, as well as to loved ones.

There are likely a variety of reasons why people of color are not getting this care at the end of their lives. They may tend to prefer aggressive treatments, and may not be offered palliative options, due to institutional racism, cultural and language barriers, lack of access, and economic and insurance hurdles. These facts have been documented by researchers, who found that people of color with end-stage kidney disease were less likely to receive referrals for palliative care than white patients. Other reasons may include mistrust of the health-care system, lack of in-home resources, influences of cultural and religious beliefs, lack of knowledge about available services, and misconceptions about hospice and palliative care.

Indeed, the racial disparities in use of hospice and end-of-life care are consistent with a broad range of racial disparities in the use of health care, as well as health outcomes.

Everyone deserves equal access to all types of end-of-life care. So how do we make that happen?

It will take time, cultural and religious sensitivity (e.g., understanding the importance and impact of faith, spirituality, and culture on end-of-life care decisions in communities of color), and trusted voices to empower and inform diverse communities about the quality-of-life benefits of hospice and palliative care.

Heath-care professionals should initiate conversations with all of their patients, no matter their background, about the importance of discussing their end-of-life care options with their doctors and loved ones, documenting their preferences in writing by completing an advance directive, and appointing a health-care proxy to carry them out if they are unable to speak for themselves. This information can be a source of enormous comfort for terminally ill patients and their loved ones.

Just as we fight for everyone to have equal access to what options people want in life, so too should we fight for equal access to options they want when it comes to death.

Complete Article HERE!

How Black Joy Helps Me and My People Hold Our Collective Grief

In a world where the Black experience is often marred by tragedy and hardship, finding joy is essential.

Choosing to embrace joy can be intentional — even in the face of grief.

By Nneka M. Okona

I know what it means to mourn. I know what it means to look at what was once a life full of joy and levity — only to see heaviness and despair left as the fruits of the harvest of life. Since 2017, I’ve been in a free fall, rattled by loss. In a five-year period, I’ve lost one of my dearest and closest friends from graduate school, two beloved aunts, and my dad.

In five years, I’ve watched my social circles get smaller as grieving made me shrink into a more fearful version of myself, always crouching somewhere safe within my psyche to avoid experiencing the pain of loss, especially sudden loss.

Often people say that grieving is lonely. And it is. When you grieve, whether a person, place, thing, or a state of being, you are actively calling back the love and affection you poured into that person or thing, trying to understand how to extend that care to yourself again.

That is inherently lonely, because it is your relationship that you are mourning; no one else can know the depth or realities of it. No one else can relate to your pain — your grief is yours alone. Grief requires a reordering within of everything you formerly knew about the self attached to that other entity — work that could assuredly take a lifetime.

The Importance of Harnessing Joy When Living With Grief

My grief that I have carried in this period of life, as profound, life-altering, and cataclysmic as it has been, is not unlike the grief that most other Black people have experienced. Whether it’s due to police brutality, the ills of racism in general, or watching our loved ones, friends, and community members die of COVID-19, there is so much to grieve, so much to mourn.

Black collective grief has been at the forefront of my mind in my time of mourning, as are spots and places of joy. We all will have to endure the inevitable heaviness of life; how we harness joy to keep us anchored to this world can act as our guiding light. Our guiding force. A North Star of Joyfulness.

How we harness joy to keep us anchored to this world can act as our guiding light. Our guiding force. A North Star of Joyfulness.

How we harness joy to keep us anchored to this world can act as our guiding light. Our guiding force. A North Star of Joyfulness.

The queer womanist writer and thinker Audre Lorde is known for writing beautifully about self-care and what it means for Black people to care for ourselves in a world anchored in our degradation. In her book A Burst of Light: And Other Essays, she famously writes words that are often repeated: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

Self-care and Black joy are linked; one happened to pave the path for the other. Black joy is many things: Black people centering our levity and ease, cultivating and tending to the safe spaces in our lives for support when life becomes perilous, taking a break from the oppression we experience to be present in our lives in other ways, such as by spending time with loved ones and stepping away from social media when news updates are triggering. Black joy is much more than deciding to be happy and to have fun; it is a direct response to us living in this anti-Black world.

It is us saying, “Yes, the violence of white supremacy is draining and exhausting, but there is still much brilliance, vibrance, and vitality within us despite that.” Being Black is not hard — dealing with the external forces of racism is. Black joy is giving ourselves gentleness and compassion and using that to fuel community care a step further. Choosing to embrace joy is intentional, radical subversion in a world that would prefer for us to only find suffering where there can be delight.

Black joy is much more than deciding to be happy and to have fun: It is a direct response to us living in this anti-Black world.

The origin of the term “Black joy” varies depending on whom you ask. The most general assumption is that it originated as a hashtag on social media. The other prevailing thought is that the concept — and the subsequent movement it has become — are the brainchild of Kleaver Cruz, a writer in New York City who identifies as a Black queer Dominican American. In 2015, they started using the phrase online after feeling overwhelmed by the excess of Black death and pain in their sphere. From there, they have built The Black Joy Project, where they show glimpses of joyfulness in Black people online as a reminder of our joy inheritance.

Where and How I Find Joy, Even When That’s Difficult

Cultivating joyfulness for myself personally is often a challenge. When you’re in a prolonged state of mourning like I have been, giving in to that heaviness becomes instinctual. To shake up my energy, I have traveled a lot while mourning, and that has given me a place of spaciousness. Being able to literally transport myself to other places in the world to be reminded of the beauty that exists all around us has been grounding. In this way, joy has become more than just something to turn to, to search for, but a centering of sorts.

My main source of joy, though, has been connection with other Black people — notably via online grief support groups where I can talk openly and honestly about what it means to mourn as a Black person. One of these is a grief group called Black Folks Grieve, led by the grief guide Naomi Edmondson. In these special spaces designed for only Black people grieving, we share our losses, what’s coming up for us, and how we’re creating space to be buoyed in those happy moments that still come.

Sharing and Spreading Joy

Like the grief support groups that have brought me connection and contentment during a time when I felt mostly emotionally unmoored, there are many other individuals and groups creating space and holding space for others, or simply writing their way toward more joy. Of the latter, Tracey Michae’l Lewis-Giggetts wrote about joy and how we can look to it as a means of resistance in her book Black Joy: Stories of Resistance, Resilience, and Restoration. Released earlier this year, her lyrical essays on joy are framed as a beacon of hope and a steady reminder of what we can look to grab from this life, even when it seems out of grasp.

There are joy collectors in our midst, and joy reflectors: those who send up a smoke signal that while this life may be painful and full of things to heal from, things to grieve, we can harness something powerful. Something so pure that when the weight of the world barrages our souls, we can look at one another, and at our strength, love, and joy that are rooted in one another, and declare all to be well.

Complete Article HERE!

Good End-of-Life Care Out of Reach for Many Black Nursing Home Residents

Palliative care can be a godsend in the final days of one’s life, but new research shows that Black and Hispanic nursing home residents are far less likely to receive it than their white peers are.

Overall, nursing homes in the Northeast provided the most palliative care, while those in the South provided the least amount of this type of care.

But in the Northeast and West, the study found, nursing homes that had higher numbers of Black residents provided less of this type of care. In all regions, the more Hispanic residents there were in a nursing home, the fewer palliative care services there were.

“Nursing home racial disparities are pervasive, and Black and Hispanic residents tend to reside in segregated, Medicaid-dependent, financially strained nursing homes, and also nursing homes are really an important end-of-life care setting,” said study first author Leah Estrada. She’s a PhD candidate in the Columbia University School of Nursing.

Prior to the pandemic, about 25% of deaths in the United States happened in nursing homes. In 2020, that number was likely higher, Estrada said. The United States is home to about 52 million adults aged 65 and older, about 1.3 million of which live in a nursing home at any one time. An estimated 56% will eventually need nursing home care, while 21% of residents in nursing homes are Black or Hispanic, the study said.

While Black and Hispanic nursing home residents tend to have poorer health, they are also less likely to get hospice care at the very end of their lives, receive worse pain management and are more likely to undergo aggressive treatment and hospitalization, according to the study.

Palliative care is an essential part of high-quality, end-of-life care, Estrada said. It’s specialized medical care focused on improving quality of life for people with terminal illnesses and is patient-centered and holistic, Estrada said. It might include spiritual and psychological care, as well as easing physical and emotional suffering.

To assess care in different regions, the researchers surveyed 869 nursing homes across the United States, meant to represent the approximately 15,000 nursing homes throughout the country. They studied nursing homes by the concentration of Black and Hispanic residents.

“My hope is that given that palliative care is essential at the end of life, it’s possible that more high-quality palliative care can be the missing link to achieve health equity in nursing homes,” Estrada said.

“Incentivizing some sort of payment options that increase palliative care services, it’s one way that can at least improve care in the nursing home for the residents in a way that is holistic and has been found to be cost-efficient in other mechanisms and settings,” Estrada said.

Vickie Mays is director for the BRITE Center for Science, Research and Policy at UCLA in Los Angeles and was not involved in the study. She said the disparity seen in this study may be a function of lasting differences in insurance and income that started earlier in life.

“You’re more likely to see in racial and ethnic minorities that the kind of insurers near the end of their life are going to be a function of the type of employment and resources they had earlier in their life,” Mays said. Examples include past employment that paid hourly wages and didn’t offer benefits, or not being able to buy long-term care insurance.

“At the end of their lives and when they are utilizing these care facilities, those earlier inequities get played out again later in what it is that they have access to,” Mays explained.

She added that it may be important to think about what the best practices are for end-of-life care. If it’s determined that palliative care is a priority, then standardizing levels of care similar to the way labor and delivery care is standardized for pregnant women and infants could be a solution, Mays said.

“If palliative care makes a difference, it may be that we need to determine that when people reach a certain stage of health deterioration, that they should be in a particular kind of environment in which those services are available,” Mays said. “It’s standardizing levels of care and determining that those levels of care should be there, regardless of whether a person has lots of money or they are being paid for by the federal government.

“One of the things to think about is that sometimes we see a behavior as being, in terms of that particular thing, an inequity, but what we have to think about is could it be prevented if we think about it much earlier,” Mays added.

Complete Article HERE!

Black Grief Practitioners Are Protecting Black Life In Death

Like so many other injustices, the pandemic has only magnified the problems Black people face in the death and dying space. These women are working to solve them.

By Stephanie Long

The hands of a death doula surrounded by vines and flowers

Joél Simone Anthony is in her mother’s sunlit living room in Beaufort, South Carolina. She’s wearing a black long-sleeved mock neck shirt with a fresh twist out, a bold red lip, and large silver earrings that jangle like windchimes. “I live in Atlanta, Georgia, but I’m getting married and my mom had surgery, so I’m actually here taking care of her and planning my wedding and everything,” she warmly shares with me over Google Meet.

There’s something about Anthony — a full-time sacred grief practitioner — and her amenity that strikes me at that moment. Perhaps it’s because one wouldn’t expect a person whose business moniker is The Grave Woman to be so rosy; one of the misconceptions people have of those who work in the death and dying space is that the work has to be sad, she shares later in our exchange. But it’s also clear to me early on in our conversation that working as a licensed funeral director and sacred grief practitioner is more than a profession for Anthony — it’s her calling.

“Let me just start off by saying that this is something my ancestors literally gave me a title for in 2020,” she says when I ask her to describe what a sacred grief practitioner does. Her work inside funeral homes — which she had been doing for almost 10 years — was transitioning to teaching online courses amidst the pandemic. Unsure of what direction she was moving in, she went into prayer and meditation about what to call herself. “The ancestors spoke to me [and said] that the name for [what I was doing] was sacred grief practitioner,” she says.

This spiritual calling is indicative of the relationship that Black folx have with death and dying. While death is considered a taboo topic to some, it’s celebrated as a moment of joy in many Black communities — a homegoing in which those who have transitioned no longer have to endure the earthly troubles of the world. “It’s a celebration of the fact that the person who’s passed away, their spirit is now able to return to their homeland, which is tied very deeply to our history with slavery,” Anthony explains. “Those that were celebrating, or allowed to celebrate, the lives of their loved ones through funeralization did not see this place as their home. They weren’t just celebrating the fact that someone passed away like our European captors were doing; we were celebrating the fact that our ancestors or our loved ones’ spirits were now able to return home.”

When it comes to death and dying, I think that people think that the playing field is equal. People really believe in their hearts that all the bullsh*t ends in death. It doesn’t.
Joél simone anthony

This history is deeply embedded in Anthony’s work. Her home, Beaufort County’s Port Royal Sound, is where just about every African-American can trace their ancestors being brought into this country as enslaved people, she says (slave importations occured in Beaufort County between 1730 and 1776). “That alone should set the foundation for what energy resonates in this place.” It is also home to Gullah and Geechee culture, which has ties to Central and West Africa, in which death is regarded as a rite of passage through which a spirit transitions into the next realm. Funeral directors like Anthony have been instrumental in preserving Black homegoings. During these ceremonies, bodies are typically viewed in an open casket that’s been decorated with a lush presentation of flowers and other decorations. Limousines will often escort families to homegoing services. It’s a moment of mourning, but it’s also one of pride. “To give a peaceful, celebratory homegoing, it’s the whole idea of a celebration of life,” Karla F.C. Holloway, a professor of English, law, and African American studies at Duke University, told The Atlantic in 2016. “It is a contradiction to the ways in which many Black bodies come to die.”

The face of a spirit in transition resting on a bed of vines and flowers

Creating this contradiction has become central to many Black people working in the death and dying industry, and why it’s become increasingly important to decolonize it. During the summer of 2020, Going With Grace founder Alua Arthur hosted Sayin’ It Louder, a panel discussion (including Arthur, Anthony, and other Black grief practitioners: Alica Forneret, Naomi Edmonson, Oceana Sawyer, and Lashanna Williams) about being Black in the death and dying industry during the time of COVID. George Floyd had just been murdered, and there was a conversation happening regarding how to “confront racism disguised as implicit bias that exists against Black workers, Black deceased people, and patrons of their families.” There was also a call to create an accessible and centralized database of grief resources for Black people.

“We had a lot of interest. I think about 7500 people signed up, but what I found more fascinating about that was that, prior to that time, I was the most visible Black person in death and dying,” says Arthur, who also has experience as a death doula, a person who manages the non-medical care and support of a dying person and their family. “People would call Going With Grace and be like, ‘Is this the Black Death Doula?’ or ‘You’re Black, right?’ These are people that wanted a Black person to be with them.”

Like so many other injustices, the pandemic has only magnified the problems Black people face in the death and dying space. “The inequities in the way we live and die could not have become more apparent during this time, coupling both the pandemic and social movements we’ve witnessed in the last two years,” says Alica Forneret, grief consultant and founder of PAUSE, an organization focused on creating spaces that produce safe, culturally-specific, and expert-informed grief and end of life resources serving for Black and brown communities. “Starting PAUSE felt timely, important, and urgent.” she continues. “What I want above anything in this work is for people to feel like they aren’t alone in death OR in the processing of a death that’s happened in their community. To me, the way to ensure that is access to education, culturally relevant resources, and people who will guide us through the inevitable end with compassion, patience, and attention to our unique needs.”

Space is now being created for people that fit outside the dominant culture to have access to people, to support them through death and dying. I want to keep that going as long and as far as I can.
Alua Arthur

The death and dying space has historically been a largely white industry, says Arthur. This is reflected in both the visibility of Black and brown folks working within it and the training resources that are available to those who want to join.”When it comes to death and dying, I think that people think that the playing field is equal. People really believe in their hearts that all the bullsh*t ends in death. It doesn’t,” says Anthony, who has witnessed the mistreatment and mishandling of Black bodies inside funeral homes, whether due to ignorance or blatant carelessness. This is also why spaces like Arthur’s Going With Grace, a death doula training and end-of-life planning organization, are so necessary. “When I went to other training programs, I was sitting with a bunch of white folx. But in the last three years since the training program has been up and running, a big portion of our courses are people of color, women of color, people who are trans and non-binary and queer,” says Arthur. “Space is now being created for people that fit outside the dominant culture to have access to people, to support them through death and dying. I want to keep that going as long and as far as I can.”

In addition to training programs run by Black folx creating space for the marginalized to flourish within the industry, it also ensures that postmortem care is thoughtful and inclusive. “I can remember working in a funeral home and going into the embalming room where people are cared for, and a licensed professional who was training me was cutting a Black woman’s box braids out from her scalp,” Anthony recalls. “[He isn’t] thinking that he’s doing anything wrong, not doing it maliciously. The family told him they wanted the braids out, but [he] simply did not understand that her hair is intertwined in these braids that he’s cutting out.” Anthony was grateful she walked in the moment she did and was able to stop him, but situations like this are prime examples of why more standardized education that includes Black and brown folx is needed in this space. ”If it were a white woman, you would understand that you have to shampoo her hair and brush her hair a certain way. Why is that? Why is this something that you were not taught as a licensed professional?”

Vines and flowers

Around the same time as Sayin’ It Louder, Anthony and her mentor Anita Pollard Grant — a registered nurse and licensed mortician — released a Racism in Death Care course. “All of the praise and all of the accolades that we’re receiving for having these conversations as Black women is wonderful, but will this support exist a year from now?” she says, echoing her sentiments from the panel. “I feel the conversations being had by people that look like me have been happening and need to happen; however, in some ways, the energy is different,” she continues. “The timing was right for the conversation and for the projects built around it. But I don’t feel like the conversation needs to end because there’s no more media coverage on what’s happening to Black and brown people.”

Continuing the conversation of equity in the death and dying space is something that Arthur also feels very strongly about and hopes to see change. “I’m also grateful that you’re writing this piece,” she tells me. “I hope that what happens is that we’re able to continue to diversify the voices of Black people and [death] care.”

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