Several years ago, MapQuest directed me on a 10-hour drive to visit my father in a Florida hospital. Complications from diabetes, including blindness, kidney failure, congestive heart failure, and a below-the-knee amputation, had taken their toll. This time my father, 69, was hospitalized for an infection of unknown origin that physicians could not name, despite their many attempts to grow cultures.
I did not know it at the time, but my father was dying.
Once I arrived at the hospital from Durham, North Carolina, I could hear his screams from the nurses’ station. “Never mind. I hear him,” I told the nurse whom I had just asked the location of my father’s room. “I’ll follow the sounds.”
That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me. That this patient was my father, a man I had always known as a big, strong former football player – the kind of man other men didn’t dare cross (but who was also loving and gentle) – was difficult for me to process. Yet, here I was, being guided to his hospital room by the sound of his cries. Despite being a trained philosopher with an interest in bioethics, I had not yet begun to think about the ways in which racialized health disparities manifest even at the end of life. My father’s excruciatingly painful process of dying was but one example.
Gaps while living, gaps while dying
It is well documented that African-Americans experience excess mortality, or deaths beyond the expected mortality rate. However, even if disparities in the mortality rate for African-Americans were rectified tomorrow, the fact remains that we will all eventually die. And how we die matters.
According to a 2013 Pew Research survey, 72 percent of American adults have given at least some thought to their end of life wishes, with 37 percent of American adults having given their end of life wishes a “great deal of thought.” Some of these wishes include decisions about pain management, maintaining quality of life, and whether to continue aggressive medical treatment for terminal illness.
Additionally, research shows that people tasked with making treatment decisions for loved ones who cannot express their own wishes sometimes experience distress about watching their loved one suffer. Even months or years later, they wonder whether they made the “right” decision.
Black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are. Some attribute this to false beliefs about biological differences between black and white patients, including the belief that black people have “thicker skin” and, therefore, do not experience as much pain as whites. These false beliefs lead to inaccurate pain assessments by physicians evaluating black patients and an unwillingness to take the pain complaints of black patients as seriously.
This disparity in black patients’ pain management continues even as black patients are dying. Families often want to ensure that their loved ones are as comfortable as possible once patients reach the point where death is near. Racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.
Inadequate pain management is but one aspect of the lower quality of care that black patients report in general that affects when and how black patients die. In December 2015, 57 year-old Barbara Dawson was arrested and forcibly removed from Calhoun Liberty Hospital near Tallahassee, Florida, after she refused to leave without further treatment. Although she had been evaluated in the hospital, she was discharged despite her continued complaints of difficulty breathing. Hospital personnel apparently assumed she was faking her symptoms and called police to arrest her for being disruptive. Dawson collapsed before she could be placed in the police cruiser and was returned to the hospital where she died an hour later from an undetected blood clot in her lungs.
Dawson may or may not have been at the end of life when she arrived at the hospital. However, hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying. The hospital was later fined US$45,000, and Dawson’s estate settled a lawsuit against the hospital for $200,000 in 2017.
Dawson’s experience is a dramatic and appalling case. Nevertheless, one groundbreaking study revealed that physicians generally interact less – both verbally and nonverbally – with black patients who are dying than with white patients who are dying. At the end of their lives, black patients do not receive the same comfort care, including eye contact and touch, from physicians that white patients do.
The U.S. health care system can improve care for all patients at the end of life. However, this system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.
In my father’s case, even as part of me still hoped for a miracle, the thing I wanted most in the world was for him to be as comfortable as possible. That this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.
[A]frican Americans at the end of life have significantly higher rates of hospital admission, emergency department (ED) visits, and discontinuing (also known as disenrolling from) hospice care than whites, according to a new study by researchers at the Icahn School of Medicine at Mount Sinai published today by the Journal of the American Geriatrics Society.
Researchers examined whether race played a factor in rates of hospitalization, ED visits, and disenrollment from hospice. Although previous studies have found that African American patients have higher rates of hospitalization after enrolling in hospice than white patients, it was unknown if racial differences were linked to other differences in outcomes in hospice care, whether administered in an acute hospital setting or ambulatory setting, and if race plays a significant role in end-of-life care.
“While differences exist between hospice organizations in how frequently their patients are hospitalized, including time in the emergency room, and disenrollment from hospice, these patterns do not explain racial disparities between blacks and whites in hospital use and hospice disenrollment,” says Melissa Aldridge, PhD, MBA, Associate Professor and Vice Chair for Research in Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai.
Dr. Aldridge and her collaborator, Jessica Rizzuto, MPP, a student at the Icahn School of Medicine, used data from a longitudinal cohort study of Medicare beneficiaries enrolled in a national random sample of 577 hospices around the country from the National Hospice Survey from patients in active treatment until death (2009-2010). The national sample of 145,000 Medicare beneficiaries who had enrolled in these hospices at the end of life was composed of about 92 percent white patients and 8 percent black patients. Half of the hospices were for profit, and 25 percent were members of a chain of hospices. Approximately 90 percent of the patients in the study were served by hospices in an urban area. Researchers estimated the proportion of each hospice’s patients who experienced the following utilization-based outcomes from the time of their hospice enrollment to their death: one or more hospitalizations, one or more ED visits, and hospice disenrollment. They compared the unadjusted proportion of black versus white hospice enrollees with each of these outcomes.
“We found that black hospice patients were significantly more likely than white hospice patients to be admitted to the hospital (14.9 percent vs 8.7 percent), to go to the emergency room (19.8 percent vs. 13.5 percent), and to disenroll from hospice prior to death (18.1 percent vs. 13.0 percent). These patterns remained after accounting for patient illness, demographics, and type of hospice from which these patients received care,” Aldridge says. “These higher rates of emergency department use, hospital admission, and hospice disenrollment by blacks compared with whites were attributable to racial differences within hospices rather than systemic differences between hospices in these outcomes.”
The role of a hospice is to enable individuals to remain at home during the terminal phase of their illness while receiving support, pain and symptom management, and counseling for themselves and their families. These findings matter, researchers say, because higher-intensity care at the end of life may adversely impact the quality of life of hospice enrollees and their families and increase the burden on caregivers.
The data did not allow investigators to identify the reasons for hospital use and hospice disenrollment, but they said these could occur for a number of reasons, including patient and family preferences for care, patient and provider communication about the role of hospice care, availability of resources, and caregiver burnout.
Researchers say more information is needed on hospice outcomes for patients of other races, as less is known about Asian, Pacific Islander, or Native American patients.
“Our findings underscore the need to better understand racial disparities in outcomes after hospice enrollment,” says Dr. Aldridge. “Culturally sensitive interventions that increase understanding of hospice, address shortcomings in provider communication, and improve caregiver resources could help decrease these persistent differences in outcomes.”
[A]frican-American and Hispanic patients with ovarian cancer in Texas were more likely than Caucasian patients to suffer invasive or toxic treatment and to be admitted to the ICU in their final month of life, according to a study published in the Journal of Clinical Oncology.1
“We found being a minority was associated with receiving intensive and invasive end-of-life care among patients with ovarian cancer,” reported lead study author Jolyn S. Taylor, MD, MPH, of the University of Texas MD Anderson Cancer Center in Houston, and colleagues. “Irrespective of other sociodemographic factors, patients of black or Hispanic racial and ethnic backgrounds were less likely to meet end-of-life quality-care metrics.”
The authors analyzed data from the Texas Cancer Registry and Medicare to assess the treatments administered to 3666 patients with ovarian cancer who died between 2000 and 2012. Seventy-seven percent of the patients were Caucasian, 15% were Hispanic, and 7% were African-American. (One percent of patients were classified as “other.”) Only patients who had received 13 months of Medicare coverage before death were included in the analysis.
Most (72%) patients had been enrolled in hospice but only 64% were still enrolled when they died, the study team noted. Median enrollment was 20 days.
“In the final 30 days of life, 381 (10%) had more than one ER visit, 505 (14%) more than one hospital admission, 593 (16%) ICU admission, 848 (23%) invasive care, and 418 (11%) life-extending care,” the authors reported.
Ten percent (357 patients) received chemotherapy during the final 2 weeks of life.
Ethnic and racial disparities in end-of-life care remained statistically significant in multivariate analyses adjusting for year and age at death, tumor stage, comorbidity index, income and education level, and location of residence. Race and ethnicity correlated more strongly with outcomes than income, education, or geography.
“Several outcomes differed for minorities compared to white patients,” the authors concluded. “Hispanic and black patients were less likely to enroll and die in hospice (black odds ratio [OR] 0.66; 95% CI: 0.50-0.88; P = .004; Hispanic OR 0.76; 95% CI: 0.61-0.94; P = .01.”
Hispanic patients were also more frequently admitted to the ICU (OR 1.37; 95% CI: 1.05-1.78; P = .02), while African-American patients more frequently received multiple ER visits or underwent life-extending procedures (ORs 2.20 and 2.13, respectively; P < .001 for each).
The findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities,” the authors concluded.
[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.
In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.
This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.
In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.
My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.
In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.
That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.
The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.
The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.
Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.
It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.
These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.
There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.
Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.
Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.
Ndi Moyo grows herbs as an affordable way to help their patients:
Lemon grass helps patients excrete toxins
Aloe is a good balm for wounds and acts as a useful laxative
Artemisia has powerful immunity-boosting properties
Papaya sap is useful as an antiseptic
Vinca rosa lowers the white blood cell count
Source: Ndi Moyo
Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.
I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.
Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.
As many African American-owned funeral homes close, the communities they serve are losing a centuries-old means of grieving—and protest.
As a child, Richard Ables played hide-and-seek with his brother among the caskets. He has spent his entire life in the family business, the Hall Brothers Funeral Home, founded in Washington, D.C., by his uncles in 1938. Along with the funeral parlor down the street, they once buried nearly everyone in LeDroit Park, the historically African American neighborhood in the heart of the nation’s capital.
Now 73, Ables still runs Hall Brothers, though the business isn’t what it once was. Its historic brick row home is aging alongside its proprietor. There’s water damage on the ceiling tiles, and the front parlor’s carpet is matted down to a threadbare pile. The steep stairs out front aren’t accessible for all customers, and the property taxes are high. Ables wants to make improvements, but he says it’s hard to get loans for the space’s upkeep. “I would like for the firm to continue on and on and on,” he says, “but that’s up in the air.”
For more than a century, black funeral directors have been serving black communities in the United States, keeping African American funeral traditions alive. But now those institutions, which withstood segregation and prospered through it, are struggling to survive as market forces change. The largest black trade group in the industry, the National Funeral Directors & Morticians Association, or NFDMA, does not track the number of black-owned funeral homes in the U.S. But the organization’s director, Carol Williams, says its membership is shrinking—today, the NFDMA represents 1,200 members, compared to a reported 2,000 members in 1997. Many, she says, “cannot afford to keep their doors open.”
Black funeral traditions are distinctive from other burial rituals in American culture. Funeral directors have long preserved the African American tradition of homegoings, as these Christian ceremonies are often called: Bodies are typically viewed in an open casket, and a richly adorned one at that, with large floral arrangements and ornate fabrics. There are limousines and nice cars to escort families, which lends a sense of pride and pageantry to the lengthy rituals.
“To give a peaceful, celebratory homegoing, it’s the whole idea of a celebration of life,” says Karla F.C. Holloway, a professor of English, law, and African American studies at Duke University. It’s become part of black burial traditions, she says—even though “it is a contradiction to the ways in which many black bodies come to die.”
Homegoings can offer black Americans the respect in death that they don’t always receive in life. Black funeral spaces also provide refuge for the living: A family in mourning can be comforted and understood within a community institution, away from an often-racist world. Mourners can feel at home during an otherwise disorienting moment, knowing their traditions will be honored without question. “Culture and practice and ritual are known and remembered in a black funeral home,” Holloway says. “And that matters in a time of grief.”
Untimely death and dying marked the African American experience at its beginning—from mortality-plagued transatlantic voyages to the violence of forced labor and the privation of the slave quarters. Surrounded by these unnecessary deaths, funeral ceremonies were an urgent and central rite in slave communities. They also formed the foundation of the black church tradition.
From their earliest incarnations, black funerals were political, subversive—a talking back to the powers that be. Particularly in the 17th and 18th centuries, if slaves were allowed to bury their own dead and craft their own rituals, away from the overseeing eyes of whites, they could plan for their freedom, spiritually and physically.
In Richmond, Virginia, in 1800, a slave named Gabriel plotted an insurrection at an enslaved child’s funeral, according to Suzanne E. Smith, the author of To Serve the Living: Funeral Directors and the African American Way of Death. “Slave masters then cracked down, and they created a lot more rules about slave funerals,” says Smith, a professor at George Mason University. “They often insisted masters had to be present.”
Three decades later, Nat Turner led a slave revolt in Virginia. “It was never shown that Nat Turner had organized anything at a funeral, but there were rumors he had,” Smith says. In response, Virginia passed new legal restrictions on slave activities, including funerals. The fear of rebellions prompted similar laws curtailing unsupervised slave gatherings across the South.
The end of slavery, and the war that brought it about, transformed American funerals across races. It was the massive death toll of the Civil War—the bloodiest conflict in U.S. history—that brought the modern American funeral industry into being. With so many soldiers dying on battlefields far from home, families scrambled to ship bodies home. Until the war, embalming was practiced primarily by doctors and scientists. During the war, undertakers set up shop near battlefields, selling their wares and ensuring embalmed bodies could make the long journey home without decomposing. As for the many soldiers whose bodies remained where they’d fallen, black soldiers were often assigned the lowly task of burying the war’s dead.
Undertakers had once been tradesmen who simply made coffins and buried bodies. After the Civil War, the craft professionalized. More Americans were dying in hospitals, not in homes, and families gladly handed off the job of caring for bodies at life’s end. Owning a funeral home became a profitable business, and one that attracted African Americans looking for economic opportunities. In 1912, the funeral industry’s major trade association began excluding blacks from membership, officially segregating the industry. Black funeral directors worked to serve and retain black customers, who relied on them to give their loved ones respectful burials, as Jim Crow deepened racial divisions.
The funeral industry created a class of African American millionaires, as Smith notes in her book. In 1953, Ebony magazine headlined an article, “Death is Big Business,” declaring that “Negro undertakers gross more than $120 million for 150,000 [black] funerals each year.” The next year the publication ran an essay by a prominent black undertaker called, “How I Made a Million.” With growing clout, funeral directors often went into politics, and served as mayors, pastors, and community leaders.Funeral directors also played a key role in the civil-rights movement. Not only did they care for those who died in lynchings, protests, and other conflicts, but they also staged large-scale funerals—for Emmett Till, Medgar Evers, and others—that galvanized Americans to the civil-rights cause. They provided bail money when activists were jailed, and offered their premises for meetings. Hearses and funeral-home cars became a way to ferry civil-rights leaders, including Martin Luther King, Jr., around the South inconspicuously. On the night that King was assassinated, a funeral-home worker, acting as his chauffeur, was one of the last people to see him alive.
But those in the industry, both black and white, also faced scrutiny for their perceived profiteering. In 1963, the British writer Jessica Mitford published a muckraking volume The American Way of Death, which sharply criticized the excesses of the then-$1.6 billion dollar funeral business. Writing in what was then The Atlantic Monthly, Mitford’s article “The Undertaker’s Racket” called out swindling funeral directors for their unscrupulous sales methods. In shock at the money being taken from the living, ostensibly on behalf of the dead, she wrote, “The cost of a funeral is the third largest expenditure, after a house and a car, in the life an ordinary American family.” The average funeral in 1963, according to Mitford, cost $1,450 (about $11,000 in today’s dollars).
Mitford’s findings prompted an examination of the industry. But black funeral directors reacted somewhat dismissively to the book, according to Smith. She paraphrases their thinking like this: “Nobody is going to tell us we can’t have an elaborate funeral. We are the ones came when the lynching happened and we picked up the bodies off the ground. We have an elaborate funeral because that’s our tradition and that’s our way of honoring people.”
Today, the overall industry is thriving—it takes in about $16 billion per year, according to the latest data from the National Funeral Directors Association (which is different from, and much larger than, the NFDMA). But the model has changed: Chains and corporations have swallowed up much of the business. Since the 1990s, the largest chain—Service Corporation International, along with its Dignity Memorial products—has bought up competitors and small businesses to amass more than 1,500 funeral homes and more than 20,000 employees across North America, with $3 billion in revenues. The Houston-based SCI is often dubbed the Walmart of death-care, but it rarely passes along its cost-savings to consumers, instead charging more than many small companies, according to reporting from Bloomberg Businessweek. American funerals run an average of $7,000, but top-of-the-line caskets can cost more than $10,000.
Many African American homegoings, though, are still handled by small, family-owned businesses, and these continue to be elaborate, sometimes expensive affairs. Although African Americans are typically much more averse to cremation than other Americans, a growing number of people are choosing this option, which avoids the cost of a casket, burial plot, and embalming. Cost-effective cremations cut into the profits for funeral homes—one of many challenges family-owned firms are facing.
Large chains can more easily absorb profit losses because of their size—and because they have capitalized on the cremation industry. SCI, for instance, bought up the largest cremation organization and dozens of crematories. The dominance of chains portends the struggles of many small businesses, which contracted during the recession in 2008. Those issues are compounded for black-owned companies, which are less likely to get loans and comprise only about 7 percent of U.S. small businesses. Black owners often start out with less capital, as the wealthgap between black Americans and white Americans continues to widen. Without money for upkeep, the owners of small funeral homes are finding themselves losing customers to nicer, newer facilities, which are increasingly run by chains.
Richard Ables’s storefront in D.C. is facing these economic issues: Hall Brothers Funeral Home is in a neighborhood whose demographics have shifted. It’s now across from a renovated theater and a row of new restaurants. Ables’s closest competitor, Frazier’s Funeral Home, was shut down in 2008 and its building was converted to luxury apartments. Much of his black clientele has decamped to Maryland or other more affordable places, and his area is now full of new, white residents. In his experience, few whites cross the so-called color line to ask for his services. “Maybe it’s time to move from here to somewhere else,” he says, adding that he will soon need a less expensive location.
His story is not unusual. Where once many black funeral homes catered to black clients across the economic spectrum, some are now located in areas that are increasingly segregated by wealth and race. Low-income residents can’t afford many of their services, and as neighborhoods gentrify and see an influx of white residents, these businesses are left with even fewer patrons. In an effort to broaden their customer base, some black funeral directors are trying to market to whiteclientele or incoming immigrant families.The challenges of the industry may explain why the heirs of funeral home owners are increasingly moving away from the family business. Carol Williams of NFDMA, the black funeral-home trade association, says succession planning is one of the biggest issues facing her members. Historic black funeral homes have typically been passed from generation to generation, but eager successors are hard to find as the lucrative work dries up. “When [owners] don’t have a succession plan, and something happens when they can no longer operate it themselves, they end up closing,” Williams says.
As Smith, the professor at George Mason, says, “When these funeral homes disappear, you lose all that history. It’s just gone.” But their decline is also a cultural loss for the present moment. Black Americans are still eight times more likely than white Americans to die by homicide. They are more likely to die at younger ages. Last year, young black men were five times more likely to be killed by police than white men of the same age. Directors of historic, black funeral homes know this better than anyone: They’ve tended to these bodies, and those of their loved ones. They understand that even if the moment of death is tragic or violent, care for the dead can be different.
This resonates with the personal experience of Holloway, the Duke professor. In 1999, she was working on a book about African American mourning when her own son died. At the time, he was serving 95 years in prison for a string of crimes, including rape and attempted murder, which she traces in part to his unraveling mental state. He was on a work detail in a prison cotton field when he and two other inmates took off running, attempting to escape. A corrections officer fired 19 shots. Holloway is still haunted by an aerial image taken from a helicopter, shown on the news: a white sheet in the middle of the field, and under it, the body of her black son.
The historical resonance of his state-sanctioned death also haunts her. “After all, the pitiful traverse from plantation landscape to prison cotton fields was only the short matter of a century and a few score years,” she wrote in her resulting book Passed On: African American Mourning Stories, a Memorial.
“I don’t mitigate at all the violence and trauma that my son inflicted on his victims,” Holloway says. “But in the end, he was our son and we were left to bury his body.” She and her husband specifically wanted to work with a black funeral home after their son’s death—it was one way of getting assurance that their son’s body would be treated with respect. “We expected them to treat him as a child who was loved,” she says. “I don’t think I could have had that conversation with a white funeral director.”