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.

Complete Article ↪HERE↩!

February 12, 2021February 11, 2021

Society’s End-of-Life Problem

Americans have unequal access to the benefits of advance care planning

By Mara Buchbinder

As COVID-19 death tolls mount rapidly, palliative care experts have urged Americans to have difficult conversations with loved ones about our end-of-life wishes. With death all around us, they have argued, it is now more urgent than ever that we plan for our deaths.

But in addition to having “the conversation” about end-of-life wishes, we should also grapple with deeper societal questions about who gets the privilege to plan.

It may sound perverse to suggest that a cancer diagnosis could be a fortunate event, but cancer compels people to anticipate death in a way that many never will. Most people will never have the opportunity to choose when, where and how they die because death comes unexpectedly, or the circumstances impede planning. If anything, my research on the desire for control at the end of life has taught me that death, all too often, ignores our plans.

But planning has nevertheless been a prominent focus of nationwide public health efforts to improve end-of-life care over the past several decades. Advance care planning is a broad term that encompasses talking with loved ones and health care providers, appointing a surrogate decision maker and recording end-of-life preferences in writing. Advance care planning enables people to legally document their wishes—for example, to avoid life-prolonging treatment if one is unlikely to survive or to attain a certain quality of life—in case they become incapacitated.

Such planning is particularly important for COVID-19 because of the vital use of mechanical ventilation among the sickest patients. Contemplating decisions about life-prolonging treatment in advance takes on heightened importance in a climate in which critical care resources are scarce and in which intubation puts health care workers at increased risk for contracting the virus themselves.

Americans do not engage equitably in planning for the end of life, however. Black Americans consistently utilize less advance care planning than white Americans. The reasons for this include worse access to medical care, especially culturally sensitive medical care; religious beliefs and cultural values that favor leaving decisions to God; and mistrust in medicine rooted in historical legacies of mistreatment, experimentation, and racism. Yet without the benefit of planning, Black Americans are less likely to receive care consistent with their preferences.

These inequities are all the more painful in a year in which police brutality and anti-Black violence brought the Black Lives Matter movement to the forefront of public consciousness. The tragic deaths of George Floyd, Ahmaud Arbery, Breonna Taylor, Elijah McClain and many other Black Americans highlight not only a foreclosed opportunity to engage with death as an object of anticipation and planning, but also, more fundamentally, a systemic failure of white Americans to acknowledge and uphold the value of Black lives. When the system has failed and shortened Black lives at every step, can we blame Black Americans for a reluctance to engage with the very same system to plan for death? From this perspective, advance care planning may seem tantamount to acquiescence.

This is not to deny that advance care planning and communication with loved ones are important and useful goals for all Americans, regardless of race or age. I teach a seminar for second year medical students on Death and Dying in America, in which I ask them to interview a partner or family member about their end-of-life wishes. I don’t want my students—many of whom have never experienced the death of a loved one—to confront the discomfort of speaking with patients about death before having done so at home. This year’s exercise was particularly poignant, as several students had family members in ICUs, or working on the pandemic’s frontlines.

But I also ask my students to think critically about who gets the privilege of planning: to examine the cultural values that underlie the expectation for choice at the end of life and confront racial inequities in advance care planning. When we advocate for more conversations about death and dying, let’s make sure that a piece of this conversation is facing the tough questions about who among us will get to plan and choose.

Complete Article ↪HERE↩!

September 10, 2020September 9, 2020

Death Doula: We Are Segregated, Even After We Die

Lupe Tejada-Diaz works as a death doula and helps communities of color through the holistic and legal aspects of death.

By Dylan Allswang

In the midst of the coronavirus pandemic, one of the major issues for our country is the disproportionate effect COVID-19 is having on communities of color. Both infection rates and death rates are much higher in these communities than in white communities.

This is causing an increased need for healthcare, especially hospice care.

We talked to 24-year-old Lupe Tejada-Diaz who works in Washington state as an end-of-life care specialist and a death doula (a non-medical person trained to care for someone holistically at the end of life). She discussed why at such a young age she decided on this career, being an advocate for patients in hospitals especially during the pandemic and undoing the stigma around death as a taboo topic.

This interview was edited for clarity and length.

DYLAN ALLSWANG: Can you describe what the job of being a death doula entails for people who may not be familiar with that?

Lupe Tejada-Diaz: A death doula is somebody who handles the nonmedical aspect of dying. We counsel people through what they want their death to look like. We help them plan and — if they would like — on the day of their death. And after, we help their families deal with all the bureaucratic things that go into it.

DA: Who are some of your usual clients?

LTD: I work specifically with people of color, indigenous people, LGBTQ communities and low-income communities. I do a lot of community education. So I work at senior centers and community areas that ask me to come in and talk about accessible care options.

DA: This is a pretty unique career path. Why did you choose to be a death doula?

LTD: I saw a need in my community that wasn’t being met. In America, death is still really segregated. And a lot of people don’t think about when we [people of color] go into a white-owned funeral home, they don’t know how to do our hair; they don’t know how makeup works on our skin tone.

I wanted people to see that there are different options. Also that you don’t always have to pay hundreds of thousands of dollars to have a good death. When you die in America, you have to kind of undo the life you had. If you have debts, they need to be settled and sorted and your assets have to go through the system called the probate system.

In order to do that, you need to have all kinds of paperwork, different death certificates, different powers of attorney and it’s really difficult for families who are grieving to call 100 different companies and be like, “Oh yeah, so and so died.” So that’s where I come in and help do that kind of tough stuff for them because death in America is unfortunately a super long and arduous legal process.

DA: Communities of color are more likely to distrust medical institutions. How does that play into your line of work?

LTD: So in a lot of the American health care systems, people of color specifically aren’t treated the same way that their white counterparts are. They are kind of brushed aside. Their concerns are not addressed.

I think that with the coronavirus, now more than ever, we are seeing that people of color are dying at disproportionate rates to white people. And the people working in death are also really tired because even in the middle of a pandemic, we still want to honor this wish that our cultures have.

I think that having someone who speaks the same language or looks like you or from the same kind of background, really helps you feel that sense of security that you normally wouldn’t get in hospitals or clinics. You feel like someone is on your side to kind of help you battle through that. So there’s more trust.

DA: How are you working with clients during the pandemic?

LTD: So we’re doing a lot of virtual communication, Zoom and FaceTime. But I’m also still doing a lot of the legal work I do. But unfortunately, the people that are taken into the hospital, I’m unable to be an advocate for them because it’s kind of out of our hands at this point. People are scared. People are worried that they’re not going to be able to have the traditional funeral burial services that they wanted their whole lives.

Specifically the Indigenous community, we have gone through epidemics and pandemics, not quite to this size, but the kind that wiped out our entire tribe and our entire society. So we have a sense of knowing that it will pass, but there is still that fear. We all just have to do our part to stop the spread and to be mindful of our neighbors as we possibly can be.

DA: Why do you think death is such a taboo topic?

LTD: I think that the main goal for a lot of death doulas is to spread awareness that it’s OK to talk about death. Talking about it isn’t going to bring death. There’s a lot of superstitions along those lines. And I just want everyone to know that it’s not necessarily something scary. It can be something beautiful.

We don’t have to rely on our doctors and hospitals to deal with death if it’s something that we can deal with at home. There’s a place for medicine and there’s a place for home care. And by marrying that together, I think it would really help the landscape of the American mentality for future generations.

Complete Article ↪HERE↩!

July 10, 2020July 9, 2020