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.”

Complete Article HERE!

The Burden of the Black Mother

Members of the “Mothers of the Movement,” who are mothers of victims of police shootings, in July 2016.


As soon as Mamie Till-Mobley, then Mamie Till, learned of her son’s torture and murder, she got to writing. There was work to be done, a need to understand every detail, a responsibility greater than her own healing. Her memoir — she did not live to witness its publication some 50 years later — reflects, “Emmett was dead. They had pulled his body from the Tallahatchie River … weighted down by a heavy gin fan tied around his neck with barbed wire … I had to get everything down … I was the one who was going to have to explain to people.”

The ritual of a Black mother’s public grief after her child is stolen from this Earth is an American obsession, however numbing. It’s tradition to focus on watching what this Black mother does and what that Black mother says, not because we care for her — we’re focused because we care about what she can do for the rest of us.

Till-Mobley’s instinct wasn’t wrong. She wasn’t imagining more pressure for herself than what was foisted on her; instead, she vocalized Black mothers’ most conflicting internal monologue, the one where we’re conditioned as selfless beings told to withstand more than the rest, represented not as mothers of our own children but mothers of movements and a nation. Within moments of learning their baby is gone, their worst nightmare realized, they are asked to comment, to mourn publicly but to do so with restraint, to impart some kind of hopeful message or motivation, to provide a call to action, to do something, anything, larger with their pain than to grieve.

Nearly six decades after Till-Mobley started writing, Sybrina Fulton found herself in similar circumstances, sitting in court identifying her child’s screams in the background of a recorded 911 call. Fulton was thrust into the spotlight in the most tragic way. She would later say, “At first, I didn’t want to be the voice for Trayvon after he died, but I decided I have no choice. Now, I’m called to act and called to serve.”

She did not stand alone with this burden. Fulton, Lezley McSpadden (Michael Brown’s mother), and Lucy McBath (Jordan Davis’s mother) all translated their worst personal traumas into tangible political and civic action. Not only was each asked to calm her raging community by speaking to crowds while at her own loss for words, all three ran for office to try to find justice for their children. McBath won her race for Congress; Fulton’s and McSpadden’s efforts came up as short as the system that had failed their sons. Where they were willing to do everything in their limited power to recover from this great American debt, they did not receive that backing in return.

The problem with seeing Black mothers as an endless energy source, both in the home and on the world stage, is that it conflates all their sacrifices with superhuman strength. Their every decision becomes one made on behalf of Black people and on behalf of the entire Republic, instead of part of their own restoration. We prioritize our needs over theirs, assuming they can forgo their own. Absolve a country from having to reckon with its own harm-doing, and it’ll turn the responsibility back on these mothers for their loss. And when they ask for help with these pressures, it is rare for such needs to be met.

Black mothers’ uncompromising stance that their tragedies not be taken in vain has shaped much of our history. Till-Mobley’s demand that Emmett’s casket be left open at his funeral propelled the civil-rights movement forward. However, it has grown too heavy for one body to carry a fight that requires us all. It’s time to mother our Black mothers for a change.

Complete Article HERE!

With a Simple Funeral, South Africa Bids Farewell to Desmond Tutu

The archbishop and Nobel laureate left plans for an unostentatious ceremony, which were stripped back further under Covid restrictions.

By Lynsey Chutel

In an almost empty cathedral, with an unvarnished, rope-handled coffin placed before the altar, South Africa said farewell on Saturday to Archbishop Desmond M. Tutu with the simplicity that he had planned.

Archbishop Tutu’s death last Sunday at age 90 was followed by a week of mourning, as the world remembered his powerful role both in opposing apartheid and in promoting unity and reconciliation after its defeat.

But his funeral in a rain-soaked Cape Town, where pandemic regulations limited attendance to 100 and discouraged crowds outside, was far more subdued than the packed stadiums and parade of dignitaries that mourned South Africa’s other Nobel Peace Prize laureate, Nelson Mandela. It was exactly what the archbishop had wanted.

A hymn sung in his mother tongue, Setswana; Mozart’s “Laudate Dominum”; and a sermon delivered by an old friend were all part of what Archbishop Tutu designed for his requiem Mass, celebrated at St. George’s Cathedral. There would be no official speeches beyond the eulogy, and the only military presence allowed at the funeral of a man who once said, “I am a man of peace, but not a pacifist,” came when an officer brought South Africa’s national flag to be handed to his widow, Nomalizo Leah Tutu.

The coronavirus pandemic further scaled down proceedings. With a limited guest list, the only international heads of state in attendance had a close relationship with the archbishop, like King Letsie III of Lesotho, who spent time with the Tutu family as a child at a boarding school in England. A former president of Ireland, Mary Robinson, read one of the prayers during the requiem Mass. With singing discouraged in closed spaces to reduce the spread of the virus, the choir performed in an adjacent hall.

“Desmond was not on some crusade of personal aggrandizement or egotism,” said the friend who delivered the sermon, Michael Nuttall, who as bishop of Natal in the 1980s and 1990s became known as “Tutu’s No. 2.” He described their relationship, as the first Black archbishop of Cape Town and his white deputy, as a precursor “of what could be in our wayward, divided nation.”

Archbishop Tutu “loved to be loved,” though, recalled Bishop Nuttall, and this was the enduring image of the diminutive man in flowing clerical robes: a dynamic leader who joked and scolded with equal gusto.

The activist archbishop was at the forefront of the struggle against apartheid. Outside South Africa, he campaigned for international sanctions as he preached about the injustices that Black South Africans suffered under the segregationist regime. At home, he presided over dozens of funerals of young activists killed as the country’s townships resembled a war zone in the final years of apartheid.

After the country’s first democratic election in 1994, he led the Truth and Reconciliation Commission and christened the “new” South Africa the “rainbow nation” as he tried to shepherd its citizens toward national healing. In the nearly three decades since the end of apartheid, he continued to speak out against the corruption and inequality that sullied that ideal.

“When he first spoke about us as a ‘rainbow nation,’ South Africa was a different place and were going through a very difficult time,” President Cyril Ramaphosa said in his eulogy. “He has left us at another difficult time in the life of our nation.”

In the week leading up to the funeral, those who were close with Archbishop Tutu said that as he became increasingly frail, they saw a man distressed by South Africa’s enduring social and economic inequality. In the past two years, the coronavirus pandemic and resulting lockdowns have further exacerbated poverty, bringing unemployment to record levels.

Under Covid-19 restrictions, at a public viewing site erected in the Grand Parade, Cape Town’s main public square, barely 100 people gathered to watch the service on a big screen. Those who braved the rain said they wanted to say goodbye to a “great man,” like Laurence and Joslyn Vlotman, who brought an umbrella and small camp stool. But many, like Meg Jordi, sat on the ground.

Michael Jatto, a British national on vacation in South Africa from England, took his two daughters to the square to learn about the archbishop — “for us as Africans, for our children to see a great man being shown in a positive light.”

For many South Africans who attended Christian and interfaith services in the days leading up to the funeral, there was a collective sense that South Africa had lost its moral compass. Some, though, found hope in the renewed focus on Archbishop Tutu’s life and legacy.

“I feel we’ve gained in the way that the country, the government, the church has magnified him and held him up,” said Nikki Lomba, who watched from behind a barrier with her mother, Brita Lomba, as the archbishop’s coffin was driven away in a hearse. “I feel we’ve gained more hope, and at a very pivotal moment learned a lot in his passing.”

Complete Article HERE!

Black-owned hospice seeks to bring greater ease in dying to Black families

André Lee, administrator and co-founder of Heart and Soul Hospice, stands with Keisha Mason, director of nursing, in front of their office building last week in Nashville, Tenn.

By Blake Farmer

This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. And so when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.

“He’s good to me — buys me anything I want,” she says, as she pulls a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off all the trinkets she picks up at estate sales.

Down the hall, Willie lies in their bed, now unable to speak. His heart is giving out.

“You gonna wake up for a minute?” she asks as she cradles his head. She pats his back while he clears his throat. “Cough it out.”

Mary has been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville that is focused on increasing the use of comfort care at the end of life by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they’re trying to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear that they are Black and that they intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data show that in Nashville, just 19% of the hospice patients are Black though they make up 27% of the population.

Though the area already had numerous hospice agencies, regulators granted the permission, based primarily on the value of educating an underserved group.

Hospice care helped Mary and Willie Murphy with a few baths a week, medication in the mail, and any medical equipment they needed. And there was the emotional support from a caring nurse.

In Mary Murphy’s first experience with hospice, her mother had suffered from dementia for decades, yet still when transitioning to hospice came up with her mother, Murphy had many concerns. She felt like she was giving up on her mom.

“My first thought was death,” she says.

National data shows Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with white patients for whom the figure is 54%, according to data compiled annually by the National Hospice and Palliative Care Organization.

Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the last six months of life, but predicting when the end will come is difficult, especially with dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she says about the day her mother died.

This year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” says Keisha Mason, who is Heart and Soul’s director of nursing.

Mason, like Murphy, is Black and says that in her view, there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’ ” she says.

As Mason has helped launch this new hospice agency, she’s begun using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she says.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit, Nashville pastor the Rev. Sandy McClain, and André Lee, who is a former hospital administrator on the campus of Nashville’s Meharry Medical College, a historically Black institution.

Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

Lee says more families need to consider home hospice as an alternative for end-of-life care. Nursing homes are pricey. And even with Medicare, a hospital bill could be hefty.

“You’ll go in there and they’ll eat you alive,” he says. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons why there’s a gap between white and Black families’ use of the benefit. Some speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.

The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide for how to reach more Black patients this year. It recommends connecting with influential DJs and partnering with Black pastors. But also just hiring more Black nurses.

Lee says it’s not overly complicated.

“A lot of hospices don’t employ enough Black people,” he says. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have been attempting to minimize any barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York says her large agency has been meeting with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she says. “They had many of the same sort of misperceptions.”

Whether it’s an upstart hospice company or one of the oldest in the country, everyone still has a lot of end-of-life educating to do to bridge the racial gap, Drayton says. “We’re not just handing out a brochure,” she adds.

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How unresolved grief could haunt children who lost a parent or caregiver to COVID

The number of U.S. deaths from COVID-19 has surpassed 775,000. But left behind are tens of thousands of children — some orphaned entirely — after their parents or a grandparent who cared for them died. In this report co-produced with the NewsHour, Kaiser Health News correspondent Sarah Varney looks at the risks these grieving children face to their well-being, both in the short and long term.