I want my hair to be fully gray.

The lives of Black folks should end with dignity

By

As a Black man, these past few months I have thought a lot about dying. More than usual.

When I was young, I imagined a death where I learn that I have an incurable disease and then begin my final, glorious lap around.

The end comes in the company of family and friends and a final touch of a loving hand before my last breath. The end, in some way, resembles the very beginning of life — swaddled, surrounded by love, care and attention to every breath. There is something sacred about that first breath, the last and all in between.

When I was in college, I read about death and dying, which Emerson described as being “kind” and Socrates described as “like a dreamless sleep.” I learned that death is sacred and is a counterpart to birth. Buddhists prepare for death, because it can happen at any time — breathing is the most cherished gift of nature.

I loved my college courses. I have taught my share as well. Every time I would return home from college and enter Grace Temple Baptist Church in California with my mother, I was in the presence of people who knew things. They knew, to quote James Baldwin, rivers “ancient as the world and older than the flow of human blood in human veins.” They knew about death and dignity, especially those who grew to be old.

I have lived long enough to know there is no promise that the end of my life will be the one I hope for — a time that involves a rocking chair and a grandchild on my knee; stories about the 50-pound trout that I caught in Lake Washington; the basketball game where I sang the national anthem and went on to score 75 points, including the winning basket; endless magic tricks.

I want to fall asleep at the dinner table but not before saying embarrassing things. I want to be seen as having wisdom worth sharing. I want my hair to be fully gray. I want to be called distinguished every now and again and crazy most often. I don’t need much praise and will settle for forgiveness for the times I’ve come up short. I want to tell stories about the 70s. I want to pass down my Marvin Gaye and Supremes vinyl. I want to tell the kids, “Lemme show you how the ‘Soul Train’ dancers busted a move in the day.”

When I would return home to visit my mother in California, there were fewer and fewer Black men in her church. One year, the men’s choir had become a trio. I know the life expectancy data for Black men, many who have suffered quietly. I know the price of things, which is why I lie awake at night out of the “reach of warm milk.” I know that I’ll be fine but not okay. My father held his grandson, my son, once, for a moment. He never met his granddaughter. I pass on my father’s fishing and military stories as best I can.

I think about death more now because I want to live well. I do not want my life to be something I beg for. I do not want to plead for my last breath under an officer’s knee. I do not want to run from a bullet. I do not want my final moments to be recorded by a stranger with a cell phone, a video that goes viral. I do not want my nurse to be in a biohazard suit. I want my last breath, my brother’s last breath, my son’s last breath, my daughter’s last breath to be cherished — just as I cherished their first breaths. On my last night, I want to feel like a child again, safe and beloved.

My friend, B.J. Miller, a palliative care physician, has made it his mission to help people live well in the face of death. He knows life, death and suffering. He says, “At the end of our lives, what do we most wish for? Comfort, respect, and love.”

I have no desire to give a “last lecture” when my time comes. I’ve had many opportunities to say what I need to say. I want the last word to go to the elders; I want there to be more elders. I want the last word to go to the young Black man in middle school and the young Black woman in high school now, those who will become elders.

I want to hear the cries and laughter of the baby newly born in the neighborhood that has the most cracks in the sidewalks and a few broken windows — a community that is truly colorful and vibrant, a community that cherishes that baby. I want that child to live to be elderly. I want my current and former students to have their say.

I want us all to rest in peace. I want it never to be said that our birthright pre-determines the length and quality of our lives. The lives of Black folks should end with dignity, their final breath sacred and childlike.

If there is such a thing as a good death, and let us imagine that there is, we take our last breaths, not have them taken.

Complete Article HERE!

Refusing to give death the last word

Between the coronavirus and police killings, Black communities are coping with seemingly endless grief. The absence of funerals during the pandemic has been particularly devastating to a culture in which collective mourning plays a vital role.

Flag dancer Tinah Marie Bouldin performed at the memorial service of Kenneth O’Neal Davis Jr., 70, at the Whigham Funeral Home

By Nyle Fort

But the death toll only tells one side of the story. The other side is the anger of being unable to see or touch your deceased loved one for the last time. It’s “a different type of grief,” says Carolyn Whigham, my mother’s longtime partner and co-owner of Whigham Funeral Home in Newark, N.J. “This is where you snot. Cry. Stomp. Shout. Cuss. Spit.”

I asked Carolyn and my mom, Terry Whigham, about their experiences as Black undertakers during the coronavirus outbreak. The stories they shared speak to the scandalous nature of the pandemic. We’re not only grieving our dead. We’re grieving the inability to properly grieve.

This is not our new normal. This is the death of normal.

Terry Whigham (center) and Carolyn Whigham (left) worked with funeral home assistant Vernest Moore at the Whigham Funeral Home.

THERE WAS NEVER a dull moment growing up in a Black funeral home. After school, my brother and I played hide-and-seek between and inside caskets. Our chores included rolling old Star-Ledger newspapers used to prop up bodies for wakes. In the summers, when I wasn’t at basketball camp, I passed out peppermints and tissues to family members of the deceased. I knew I didn’t want to make a living burying the dead. But I was spellbound by the way we mourn.

Service after service I witnessed the electricity and elegance of Black grief. The adorned body laid out in an open casket. Elders dressed in their Sunday best tarrying and telling stories of the good ol’ days. Teenagers with a classmate’s face emblazoned on R.I.P. T-shirts. A spirited eulogy followed by a festive repast where soul food is served and family drama unfolds.

It’s a ritual of death transformed into a “celebration of life.”

For Black communities, who have been disproportionately affected by the coronavirus, bans on funerals have been particularly devastating. I understand why. Not only did I grow up in a Black funeral home, but I’m currently finishing my dissertation on African American mourning.

Burial traditions have long animated African American culture, politics, and resistance. During slavery, insurrectionists like Gabriel Prosser and Nat Turner plotted rebellions at slave funerals. A year before the Montgomery Bus Boycott, Mamie Till held an open-casket service for her slain son so “the world could see what they did to my baby.” The publication of the images of Emmett Till’s mutilated body, many historians argue, was the match that sparked the civil rights movement.

Ruthener Davis at the memorial service of her son, Kenneth O’Neal Davis Jr., who died from complications related to COVID-19.

Three years ago, white supremacist Dylann Roof walked into Mother Emanuel AME Church in Charleston, S.C., and slaughtered nine black parishioners. The day after President Barack Obama eulogized pastor and state senator Clementa Pinckney, activist Bree Newsome scaled a 30-foot pole at the South Carolina State House and removed the Confederate flag. “I was hoping that somehow they would have the dignity to take the flag down before his casket passed by,” she said in an interview after her arrest.

What does this have to do with the coronavirus? Black grief does not begin or end at the funeral procession regardless of how someone has died. Our dead live on in the food we eat, the songs we sing, the children we raise, the ballots we cast, the movements we build, and the dreams we struggle to make real. But how can African Americans work through the psychological wage of unfathomable grief without the sound of a Hammond B-3 organ, or tender touch of an auntie, or the smell of cornbread and candied yams, or the sight of our loved one’s beautified body?

“Could your big mama cook? Did you save any of her recipes?” Carolyn asks a family friend whose grandmother, who was known for her peach cobbler, passed away from COVID-19. “No, because it was all in how big mama did the crust,” the granddaughter explained.

“Well, maybe grandma couldn’t write down how to do the crust but did you stand over her shoulder and watch how she kneaded that flour?” Carolyn asks. She wants to make sure that what remains in the wake of loss doesn’t pass away with grandma.

The great poet and activist Amiri Baraka, whom my family funeralized in jazzy splendor, spoke to this in his book “Eulogies”: “I want to help pass on what needs to live on not just in the archive but on the sidewalk of Afro-America itself.”

How do we keep that tradition alive amid deserted sidewalks and overcrowded morgues? Hell, how do we keep ourselves alive as we witness, once again, Black death go viral?

The memorial service of Kenneth O’Neal Davis Jr., 70, who died from complications related to COVID-19, was live streamed at the Whigham Funeral Home.

I HEARD ABOUT the killing of Ahmaud Arbery the day after my friend’s father died of COVID-19. Then I heard about the killing of Breonna Taylor by police officers who burst into the wrong home to look for a suspect who was already in custody in Louisville, Ky. Then 21-year-old Dreasjon Reed and 19-year-old McHale Rose, two Black men killed by Indianapolis police within an eight-hour stretch. Then, before I could finish writing this story, George Floyd, another Black man, was killed by a white police officer, who pinned him to the ground for eight minutes as he pleaded for his deceased mother and yelled “I can’t breathe,” echoing Eric Garner’s last words.

I refuse to watch the videos of the killings of Ahmaud, Dreasjon, or George. I’ve seen the reel too many times. Different city, different cop, different circumstances. Same horror story. But when I heard that a detective in Indianapolis said “it’s going to be a closed casket, homie,” evidently referring to Dreasjon’s funeral, I lost it.

Unfortunately, I’m used to police playing judge, jury, and executioner. But this officer had the audacity to assume the role of an undertaker, too. It’s nauseating.

Black people are not only dying at alarming rates from the virus. We’re still dying from pre-existing conditions of racial injustice. There is no ban on police brutality during this pandemic. We are losing jobs and loved ones. Police are dragging us off buses for not wearing masks, while prison officials are withholding personal protective equipment to our loved ones behind bars.

Truth is: The pandemic is unprecedented but all too familiar. The endless grief hits close to home. In one year, my family buried my brother, father, and grandmother. My mom visits my brother’s crypt almost every day. Between funerals, she steals away and sits with his remains. For Thanksgiving she brings him pork chops smothered in gravy. His favorite. On the anniversary of his “transition,” as she likes to call it, she gives his shrine a makeover and sings Sam Cooke’s “A Change Gon’ Come.” Chad had an old soul.

A casket in a viewing room dedicated to Sally Alexander, Terry Whigham’s mother.

I last saw my brother on his 32nd birthday, four days before a heart attack took his last breath away. My memory of his funeral comes in shards. I remember the sound of the drums and the look on my mom’s face and me laughing quietly to myself at the idea that he had won our final game of hide-and-seek.

In the midst of our own grief, my family has provided dignified memorial services to Black people in New Jersey, including Sarah Vaughan, Amiri Baraka, Whitney Houston, and the countless beautiful lives whose names and stories don’t make national headlines. Like the daughter of the woman who banged on the funeral home window. A week later, the woman held her shirt still as my mom, standing a short distance away in personal protective equipment, pinned a brooch that contained a photo of her daughter who’d just been cremated.

The woman wept and said, “It’s the little things that mean so much.”

She’s right. A spirit of care and compassion sits at the heart of our heroic efforts to stay alive, too.

Organist and singer Joshua Nelson performed during a memorial service.

In the midst of all of the death and violence, Black people continue to fight back, risking our lives to save others. I witnessed hundreds of protesters wearing face masks chanting “Whose streets? Our streets!” at the intersection of West 62nd Street and Michigan Road in Indianapolis, where Dreasjon was shot and killed. I thought about the residents of Canfield Drive in Ferguson, Mo., who, before Mike Brown’s blood had dried, planted flowers between teddy bears and empty liquor bottles to commemorate his death. I pictured Bree bringing down the Confederate flag, and the heartaches and heartbeats of Black joggers as they “ran with Ahmaud.” Today, I marvel at the bravery of people across the country protesting George’s killing and resisting patterns of police violence amidst the deadliest pandemic in over a century.

Even Carolyn and my mother — who don’t consider themselves activists — provided a hearse for a funeral procession protest honoring the memory of the 45 inmates who have died from the virus in New Jersey prisons.

My family’s funeral home embodies the incredibly essential work before us all today: burying our dead while refusing to let death have the last word.

Complete Article HERE!

Not all Americans have a fair path to a good death – racial disparities are real

By and

What does it mean to “die well”?

The world got an idea recently from the 92-year-old Buddhist monk and peace activist Thich Nhat Hanh, who popularized mindfulness and meditation in the U.S. The monk returned to his home in Vietnam to pass his remaining years. Many admired his desire to live his remaining time in peace and dignity.

Researchers from the University of California, San Diego recently did a literature search to understand what Americans might consider to be a “good death” or “successful dying.” As can be expected, their findings varied. People’s views were determined by their religious, social and cultural norms and influences. The researchers urged health care providers, caregivers and the lay community to have open dialogues about preferences for the dying process.

As scholars who study social health and human services psychology, we found something missing in these conversations – how race impacts life span.

It’s important to recognize that not everyone has an equal chance at “dying well.”

Black population and ill health

Take the disease burden of the African American population.

African Americans experience an earlier onset and greater risk of what may be referred to as lifestyle-related diseases, including cardiovascular disease, stroke and diabetes. More than 40% of African Americans over the age of 20 are diagnosed with high blood pressure, compared to 32% of all Americans.

In addition, the Centers for Disease Control and Prevention reports that the likelihood of experiencing a first stroke is nearly twice as high for African Americans compared with whites. African Americans are more than two times more likely to experience a stroke before the age of 55. At age 45, the mortality rate from stroke is three times higher for blacks compared to whites.

This disease burden consequently leads to their higher mortality rates and overall shorter life expectancy for blacks compared to whites.

And while the life expectancy gap differs by only a few years, 75.3 for blacks and 78.9 for whites as of 2016, research suggests that African Americans suffer more sickness. This is due in part to the increased prevalence of high blood pressure, obesity and diabetes in this population.

Genetics, biological factors and lifestyle behaviors, such as diet and smoking, help explain a portion of these differences. However, researchers are still learning how race-related social experiences and physical environments affect health, illness and mortality.

Access to health care

factor is that African Americans have historically underutilized preventive medicine and health care services. They also delay seeking routine, necessary health care – or may not follow medical advice.

One study found that during an average month, 35% fewer blacks visited a physician’s office, and 27% fewer visited an outpatient clinic compared with whites.

“The only time I go to the doctor is when something is really hurting. But otherwise, I don’t even know my doctor’s name,” said a young African American male during a research study in Chicago, Illinois.

There are reasons for this mistrust. Researchers who study medical mistrust argue that high-profile cases of medical experiments are still playing a role in how African Americans view health care systems and providers. In the past, physicians have intentionally done harm against people of color. A well-known case is the Tuskegee Study of Untreated Syphilis in African American men, which lasted from 1932 to 1972.

In this clinical study, 399 African American men, who had already contracted syphilis, were told that they were receiving free health care from the government. In fact, doctors, knowing their critical condition, were awaiting their deaths to subsequently conduct autopsies and study the disease’s progression.

Even though penicillin had been proven to treat syphilis by 1947, these men were denied the treatment.

Why discrimination matters for health

Other studies suggest that regardless of their knowledge of past medical abuse, many African Americans have low levels of trust in medical establishments.

“Doctors, like all other people, are subject to prejudice and discrimination,” writes Damon Tweedy, author of “Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine.” “While bias can be a problem in any profession, in medicine, the stakes are much higher.”

Unfortunately, these fears are underscored by empirical evidence that African Americans are less likely to receive pain medication management, higher-quality care or survive surgical procedures.

In addition, a growing body of literature has established that experiences of discrimination are extremely harmful for physical and mental health, particularly among African Americans.

This research adds to the body of evidence that experiences of discrimination harm people’s health and may contribute to the increased rates of premature decline and death among blacks.

What does it take to die well?

As African American scholars, we argue the “art of dying well” may be a distant and romantic notion for the African American community.

African Americans are also exposed to earlier and more frequent deaths of close loved ones, immediate family members and friends.

Their increased “vulnerability to untimely deaths,” writes Duke University scholar Karla Holloway, shows African Americans’ lack of access to equitable and fair paths in life.

Before defining “a good death,” American society must first begin to fundamentally address how to promote quality living and longevity across all racial groups.

Complete Article HERE!

Dying while black:

Perpetual gaps exist in health care for African-Americans

Studies show that pain in African American patients is often not addressed.

By

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.

The author with her father, John Wesley Wilson, on Easter Sunday, 1977.

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.

Pain ignored

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.

Symptoms ignored

Pain is ignored more in African Americans patients, and so are symptoms.

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.

Less interaction

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.

Complete Article HERE!

Researchers find racial disparities in intensity of care at the end of 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 .

“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.”

Complete Article HERE!

Inferior End of Life Care for Ethnic-Minority Patients With Ovarian Cancer

Study findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities.”

By

[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.

Complete Article HERE!

Fighting for a good death

By The BBC

handholding

[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.

Local hospitals are extremely under-resourced
Local hospitals are extremely under-resourced

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.

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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.

 Providing palliative care at home means patients can remain in their community
Providing palliative care at home means patients can remain in their community

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.

Jonathan was suffering from oesophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.
Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.
His family wait outside his hut
His family wait outside his hut

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.

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