Inmate Scott Abram sings to a fellow inmate who is dying and is spending his last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. (AP Photo/Andrew Welsh-Huggins)
As late-morning sun streams through narrow prison windows, convicted killer Scott Abram stands beside a fellow inmate, speaks quietly to him and starts singing “Amazing Grace.” The prisoner appears to smile, but it’s difficult to gauge his response. He is dying.
He passes away two days later in early September.
Abram is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. Behind bars since the early 1990s for murder, he has gotten used to spending time with male prison friends as they die in rooms 205 or 206 on the second floor of the state’s prison for chronically ill inmates.
“We’re all human, and we make mistakes,” said Abram, sentenced to 15 years to life. “There are some that make bigger mistakes, like me. I make a lot of mistakes each day.”
Abram, 48, is a Stephen Minister, a type of lay counselor common in churches around the country but rarer inside prison walls. He is one of 15 male and female inmates trained in the program at Franklin Medical Center, a small prison just south of downtown Columbus that houses some of the state’s sickest inmates, many of whom die there.
Abram’s hospice work is just part of his Stephen Minister counseling. He and others also work with troubled inmates, perhaps helping them write a letter or make a call.
In Ohio and nationally, the inmate population is graying. Ohio had 8,558 inmates over 50 this year, nearly double the number in 2001. Other states, including Louisiana, Iowa and California, have similar prison programs.
Prisoner Sheila Belknap says her participation also makes her think about her own mistakes. Belknap, 42, plans to continue hospice work after she is released next year from a four-year term for theft charges. She calls her work with the dying a privilege.
A prison official points out a handmade quilt featuring the names of inmates who have died in prison hospice at the Franklin Medical Center, on Friday, Sept. 11, 2015 in Columbus, Ohio. Inmates trained in a counseling program called Stephen Ministries help fellow prisoners in their last days. (AP Photo/Andrew Welsh-Huggins)
“It’s just the satisfaction I get just from being there at the time of need,” she said. “No one wants to pass alone.”
Nos. 205 and 206 — there is also a room in another unit for female patients — resemble ordinary hospital rooms. Hanging wall quilts made by volunteers soften the institutional feel. Abram and Belknap are often joined by members of a Columbus choir that sings to hospice patients around central Ohio.
The Department of Rehabilitation and Correction hopes to expand the number of Stephen Ministers at other prisons, though hospice care would remain in the Columbus facility.
On average, an Ohio inmate dies of natural causes every three and a half days, not unexpected with a statewide prisoner population of 50,000, the size of a small city.
The national Stephen Ministry office in St. Louis is unaware of other state prisons with inmates trained in their counseling program.
Louisiana began an inmate hospice program in 1997 at the state penitentiary in Angola and developed a 40-hour training program for offenders, who volunteer for four-hour shifts with dying prisoners. California says it established the nation’s first inmate hospice at the California Medical Facility in Vacaville in 1993.
Inmate Scott Abram, holding a training dog, Ziva, talks about his work counseling fellow inmates including some who are dying and spending their last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, also trains puppies that may end up as pilot dogs. (AP Photo/Andrew Welsh-Huggins)
The program at the Iowa State Penitentiary in Fort Madison, Iowa, was the subject of “Prison Terminal: The Last Days of Private Jack Hall,” a documentary by filmmaker Edgar Barens that received a 2014 Academy Award nomination.
“It not only helps the prisoner who’s dying of a terminal illness, but it’s so redemptive for prisoners who go through the process of becoming hospice workers,” said Barens, a visiting media specialist at the University of Illinois at Chicago. “It’s tenfold payback when a prison does this.”
SOME PEOPLE JUST want to die. Not because they are trapped by depression, anxiety, public embarrassment, or financial ruin. No, these poor few have terminal illnesses. Faced with six months to live, and the knowledge that the majority of those 180 days will be bad ones, they seek a doctor’s prescription for an early death.
Soon, terminal patients in California could have that option. Currently sitting on Governor Jerry Brown’s desk is a bill that, if signed into law, would allow doctors to prescribe life-ending drugs. Not surprisingly, this is controversial. Proponents believe the law would save diseased people from the worst days of their prognoses. Opponents say the law violates the sanctity of life, and can be exploited by ill-meaning family, physicians, and insurance companies at the patient’s expense.
But there’s a third group who believe this debate misses the real problem: that the American health care system is just an all around miserable place to die.
In the 1990s, Dr. Jack Kevorkian’s name became synonymous with so-called assisted suicide. He argued, famously and flamboyantly, that patients should have the right to euthanasia if the suffering from age, disease, even mental illness overwhelmed their will to live. “The patient’s autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants,” he once said in court.
Kevorkian lost his court battles, and spent eight years in a Michigan prison. But his fight was not in vain. Four states have since legalized physician-aided death (and would-be fifth New Mexico has a law in legal review). The first was Oregon, and its Death With Dignity Act has become the model for the rest. There the patient must first have a six-months-to-live prognosis. Then, the patient has to write a request to the physician (who may refuse on moral grounds). Two witnesses have to sign that request, one of whom is not related to the patient, not in the patient’s will, and not the patient’s physician or an employee of the patient’s health care facility.
If the first doctor approves the request, the patient has to give it to a second doctor, who examines medical records to confirm the diagnosis and make sure the patient has no mental illnesses that might affect his or her decision-making ability. After a fifteen-day waiting period, the patient has to confirm that he or she still wants the doctor’s aid in dying. Only then will the doctor prescribe the lethal prescription. And the patient is under no obligation to take it, either.
In fact, since it was passed into law, only about 65 percent of the 1,327 people prescribed the medication have used it.
Raising the stakes in California
On December 31, 2013, California resident Brittany Maynard had a master’s degree in education, several years of experience teaching abroad in orphanages, and a husband. On January 1, 2014, she had stage two brain cancer. She went through surgery, and the doctors cut away the cancerous parts of her brain. But in April, the disease returned. Stage four glioblastoma, with little hope of treatment. Her doctor informed her she had six months to live.
Given the choice, Maynard said she would rather die before the cancer’s debilitating final stages destroyed her health completely. A few months later, she moved from California to Oregon.
Maynard took her lethal dose of medication on November 1, 2014. Her last message, posted on her Facebook profile, read:
“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”
Maynard’s broadcasted decision put the public behind California’s bill. Like the other states’ laws, it is modeled after Oregon’s, with some some add-ons meant to assuage opponents. California patients would have to request aid in dying three times instead of twice. “The physician who prescribes the medication must have a one-on-one conversation with the patient, to verify that it is their choice, and that no one is putting any pressure on the patient,” says Ben Rich, a lawyer and expert in end-of-life bioethics, from the University of California, Davis. And after ten years, the law would expire.
Missing the point
But for some in the palliative care community—the doctors, nurses, and caregivers that manage end-of-life care—the battle over aid in dying is a distraction from the real problems that dying people face. “I think it’s a moot debate that’s divorced from the reality of end-of-life care,” says David Magnus, a bioethicist at Stanford Medical School. That reality is clear in a report published last year by the Institute of Medicine of the National Academies of Science.
Titled Dying in America, it showed that patients often can’t get—or don’t know about—the type of treatment they actually need to be comfortable and pain-free in their final months, weeks, days, and hours. This is probably tied to the fact that America only has half as many palliative care physicians as it needs.
That’s not all. Magnus says insurance companies favor big lifesaving efforts and shiny technology. “We put a lot of emphasis on technology and innovations, and this tends to downgrade communication,” says Magnus. And clear communication about death is probably the first prescription is probably what most terminal patients need most.
As a result, patients end up getting treatment that doesn’t help them have a more comfortable death. In fact, it become the opposite. “You’ve got a patient who is sick, going though a roller coaster ride,” says Magnus. This includes cycles of chemotherapy and remission, trips to surgery to intensive care to therapy to home, then back again. “And each time, it’s much more difficult on the patient and on the patient’s family,” he says.
“A lot of what we see are patients who have some sense that their condition is bad but are not told explicitly how bad their prognosis is,” says Magnus. For example, many patients don’t understand the difference between palliative and curative treatments. “When they hear that their condition is treatable, they think there is a chance that they can be cured,” says Magnus. But treatable, to physicians talking to a terminal patient, often mean simply easing that patient’s suffering. Treatable has nothing to do with living or dying.
Palliative communication
Other studies back up Dying in America. Last year, scientists published in the Journal of Oncology that with better communication, more terminal patients might choose hospice rather than more radiation or chemotherapy. A2005 study showed that doctors regularly missed opportunities to convey information to patients that would affect their decisions about end-of-life care. Magnus has also done research on doctor-patient communication, and what he sees is usually pretty dismal.
“The caveat, is it’s very hard to communicate bad news to families,” says Magnus. He says it’s understandable that doctors hedge their discussions towards the positive. This goes back to the end-of-life training that doctors do not receive in medical school.
But until the medical system gets fixed (don’t hold your breath), patients can circumvent the assisted death circus by getting advanced care directives, such as a living wills. These are legal documents that outline how you should be treated in the event of a severe illness, accident, or just plain growing old. “100 percent of us are going to die, and only a quarter of Americans have engaged in formal advanced care planning,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which advocates that people use April 16 to sit down, discuss, and develop their advanced care plan. The groups website has resources for drafting up the legal documents in every state.
In California, Governor Brown has until October 71 to sign the aid in dying bill into law. While he hasn’t tipped whether his pen will enact or veto, he has criticized the legislative gymnastics that let supporters get the bill voted on without first going through scrutiny by committees. Adding to speculation that he may veto, Brown is also a former Jesuit seminarian (Catholic groups oppose the bill).
But the bill has a groundswell of public support. According to a bipartisan public opinion poll, 69 percent of Californians are in favor of physician-aided death. “Why is this touching a nerve? Why is it millions of people want these laws on the books?” asks Magnus. He doesn’t believe it’s because so many people are terrified of having a sickness steal away their preferred choice: Life. Rather, he says it speaks to a more common fears: dying in pain, without control, without dignity, surrounded by people they do not know in a place they do not want to be. The choice that concerns them is not whether to die, it’s how.
1 UPDATE: Correction 12:12am ET 9/30/2015 The original story said the enactment deadline was September 28. In California, the governor has 12 working days to act on bills (such as the End of Life Option Act) passed in special Assembly sessions. But, that time began when the bill landed on the governor’s desk (which was September 25), not when the bill cleared the Assembly (September 11). If the governor doesn’t sign or veto within that deadline, the bill automatically becomes law.
The following information is primarily for our friends in the UK. However, it’s a great checklist for the rest of us too.
It’s important to understand the financial, practical and emotional support available to you and the person you care for. Information on the support that may be available to you or the person you care for is provided below.
Financial support
You or the person you care for may be entitled to some financial support. Some information on this is provided below.
Benefits for the person you care for
The person you care for may be entitled to:
Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
Attendance Allowance, if they are 65 or over and need help with personal care
Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work
There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.
As a carer, you may be entitled to receive Carer’s Allowance. You can keep getting this for up to 12 weeks if the person you care for goes into hospital and for up to 4 weeks if they go into a care home (provided certain conditions are met). If the person you care for dies, Carer’s Allowance will usually stop after eight weeks.
There’s lots of support available from different organisations for carers. It’s important that you have enough practical and emotional support in your caring role.
Support from social services
The social services department of your local Trust may provide a range of social care services and equipment for terminally ill people.
Assessments from your local Trust
An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you, as a carer, are entitled to a carer’s assessment.
Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you’re caring for and other family members may also benefit from counseling.
Support groups for carers
There may be support groups for carers in your local area. This could give you the opportunity to talk to other people in the same situation as yourself.
There are different options to help you care for someone at home.
Medical and nursing care
If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their local doctor (GP). Services that may be available include:
visits from a district or community nurse (for example, to change dressings, give injections or help with bathing or toileting)
help with getting the person into and out of bed
Services that are provided by the local Trusts may vary from region to region.
Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local Trust.
Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.
Hospices specialise in palliative care, which aims to make the end of a person’s life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counseling.
Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.
There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.
There may be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, your local Trust will work to meet any continuing health and social care needs. The person’s needs should be assessed before they return home and a package of care arranged for them.
If the person you care for needs a level of care and support that cannot be provided in their own home, a residential care or nursing home could be the answer. You can find detailed information about care homes in the health and well-being section of nidirect.
It’s natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want (or don’t want) at the end of their life. The ‘rights and responsibilities’ section of nidirect contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.
When someone close to you dies, you may benefit from counseling from a specialist bereavement counsellor. The charity Cruse Bereavement Care can help with this.
If the person you care for dies, Carers Allowance will usually stop after eight weeks. If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:
bereavement payment; a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
widowed parents allowance for people who have dependent children
bereavement allowance for those aged 45 and over when their spouse or civil partner dies
Hospice volunteers caress the hands of terminally ill patient Annabelle Martin, 92, as her health quickly declined at the Hospice of Saint John on September 1, 2009 in Lakewood, Colorado.
By HAIDER JAVED WARRAICH
Late on a Sunday night in the hospital, my Haitian patient’s wife came in to help translate. I don’t know what I would have done without her. I needed to tell my patient that the tumor growing in his chest was pressing on his aorta. If he needed CPR overnight, the chest compressions might prove fatal.
As I explained all this, I looked back and forth from the wife to the patient like a spectator watching a tennis match. Her face contorted in horror at the news, but he remained stoic, with his arms crossed, and kept repeating one word: lakay. Finally I asked the wife, “What islakay?” She looked at me and said: “Home. He wants to go home.”
One of the few things that people across all backgrounds and cultures value in common is home. An overwhelming amount of research from around the world has shown that home is where most patients and their family members would like to take their last breath. But not everyone has that option.
Often, the underlying disease, rather than the patient’s wishes, dictates their place of death. Patients with cancer, for example, die at home more often than those with heart disease. (Cancer progresses in a more predictable way, so those patients are more likely to use hospice services at home.)
Social support is another factor. Frequently, those close to the end require 24-hour supervision, which a relative may not be able to provide. And caring for the terminally ill is extremely taxing — for caregiver and patient — so hospitals seem like the better option.
Geography can also determine where one is more likely to die. How far one lives from a hospital is directly associated with the chances of dying there. No surprise, then, that the nation with the greatest density of hospital beds — Japan — is also where patients are most likely to die in one. (On the flip side, in areas without adequate medical and hospice resources, patients may die at home when they could have been saved by professional care.)
Race, finally, plays a role. Although the proportion of home deaths since the 1980s has risen, 43% of blacks and 44% of Latinos die in hospitals, compared with 34% of whites. (In the 1970s, the percentage of blacks and whites who died in the hospital was the same: 54%.)
That’s in part because home care is expensive, and whites are more likely than other racial and ethnic groups to have access to home services through their insurance.
Culture, however, often is an even more important determinant. Many studies have found that minorities generally receive fewer medical services over the course of their lives when they are relatively stable. But at the end of life, minorities are more likely to receive aggressive care, are more likely to want resuscitation and intubation, and therefore end up spending more time in the intensive care unit than whites.
One important solution to so many people dying in hospitals would be to build more hospice homes in inner cities. But if we want more people to have the option of dying in their own homes, we need to push insurance providers to increase end-of-life options. Although most insurance pays for hospice care, many patients also require increased support at home, which is not typically covered.
But we also need a culture change, convincing patients and their families that more is not always better in healthcare, particularly when death is inevitable.
Many patients want to die at home but are pressured by relatives and even some physicians to keep trying Hail Mary procedures that end up prolonging suffering. Having the option to die at home is perhaps one means for patients to regain some semblance of control.
Given how advanced my Haitian patient’s cancer was, I knew that there was no way we could win this war, which made me desperate for every small victory. So I savored the moment as he collected his belongings to go home to hospice services, knowing that a death in one’s own bed was a privilege that many do not have.
Dr. BJ Miller, a palliative care doctor and Executive Director of San Francisco’s Zen Hospice Project, shares insights about end-of-life care in the recent TED Talk “What Really Matters at the End of Life.” Beyond his medical training, Dr. Miller’s unique perspective was shaped by a tragic near-death accident that took his feet and arm, but left him with an understanding of suffering and a deep desire to provide a new approach to the way our society cares for the dying. Here are a few things we learned:
Priorities change at the end of life.
“We know from research what’s most important to people closer to death: comfort. Feeling unburdened, and unburdening to those they love.
Over Zen Hospice’s nearly 30 years, we’ve learned from our residents in subtle detail [that] little things aren’t so little. Take [a resident named] Jeanette – she finds it harder to breath one day to the next due to ALS. Well guess what, she wants to start smoking again… not out of some self-destructive bent, but to feel her lungs filled while she has them. Priorities change.”
Don’t numb the senses, indulge them.
“Seriously, with all the heavy-duty stuff happening under our roof, one of the tried and true interventions we know of, is to bake cookies. As long as we have our senses – even just one – we have at least the possibility of accessing what makes us feel human, connected. Imagine the ripples of this notion for the millions of people living and dying with dementia.”
Death can give more meaning to moments in life.
“There’s always a shock of beauty and meaning to be found in what life we have left. If we generate and love such moments ferociously, maybe we can learn to live well not in spite of death, but because of it.”
This is only a sampling of the wisdom shared in Dr. Miller’s 19-minute talk. Click here to view the full video. Complete Article HERE!
(Does that make me a death dude? I’ll have to ask them.)
Who here is an expert in ACTUALLY dying???
Have you done it?
To achieve expert status, one usually has to be proficient in something or have done something over and over again. Hmmm… kind of tough with the death thing”, eh?. Even those who have had near death experiences are still amateurs in a way– because they’re back! They didn’t do it right the first time! 😉
This is why we LOVE the title of this book and the work that Richard Wagner, PhD has been doing for the last 30 years. Since we are all amateurs at “the death thing”, there is actually a road map for those who are dying and will be dying. Is that you?
ABOUT OUR GUEST
Richard Wagner, Ph.D. is a psychotherapist/sex therapist in private practice in Seattle, WA, 1981 to present. He has over 30 years of experience working with terminally ill, chronically ill, elder, and dying people in hospital, hospice, and home settings. He facilitates support groups for care-providers as well as healing and helping professionals. He provides grief counseling for survivors both individually and in groups settings. He is the Founder of PARADIGM/Enhancing Life Near Death, a cutting edge, health related nonprofit organization.
Dr. Wagner was awarded the prestigious University of California, San Francisco Chancellor’s Award for Public Service in 1999 for this very work.
He is also the author of Longfellow And The Deep Hidden Woods, a critically acclaimed children’s book that touches upon the topics of death and bereavement.
Dr. Wagner was born in Chicago and grew up in Niles, Illinois, a Northwest suburb. He left home to attend the seminary after high school and graduated from Oblate College in Washington, DC in 1972. He moved to Oakland, California in 1972 and studied at The Jesuit School of Theology (part of the Graduate Theological Union) in Berkeley. He was ordained as a priest in November, 1975 and obtained his Ph.D. in 1981. Dr. Wagner lived in Oakland until 1978 and moved to San Francisco until 1999. He then relocated to Seattle, Washington where he lives today.
ABOUT YOUR HOSTS +The Death Chicks show was created to shine light on the tabooed topics of death, dying, grief, and loss. We’re listening to all perspectives and having the conversations that we as human beings who live and die on this earth, need to have, without fear of judgement.
+Patty Burgess Brecht is the President of Possibility for Doing Death Differently and Teaching Transitions. She is an End-of-Life Educator and Certified Grief Recovery Specialist. She is the developer of the End of Life Specialist Training and Certification (CEOLS), and teaches individuals and organizations how to Do Death Differently by not being overwhelmed or afraid of death, but to seek and experience the joy, the passion, and the even the exhilaration inherent in the honor of BEing with the dying. Her video-based, online, inspiring course is used in hospices, hospitals, home care, colleges and universities across the country and is now open to individuals who are drawn to this work.
+Myste Lyn is an Empowerment Coach who specializes in supporting women recovering from loss. Myste is an intuitive healer who reconnects women with their inner place of peace. She specializes in reducing fears, alleviating guilt, and creating inner confidence. http://www.bittersweetblessing.com/
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As we like to say NO ONE is getting out of this gig alive! So we may as well talk about, learn about it, plan for it, lean into it, and feel comfortable with it when it is our time or the time of our loved ones.
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Can you think of someone:
who is facing their own death and might be comforted by a roadmap
who is burdened by very heavy feelings, and could use some help re-entering life after a death?
If you do, please pass this invitation on (or after the fact, recording…).
You never know when a suggestion out of the blue from YOU, can give another a reason to go on. This could make a true difference for another. And there are people, only a mouse click away to with whom to connect and share.
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Pastor Vernal Harris and his wife Narseary Harris before regular church services at Prince of Peace Temple in Buffalo, N.Y. After experiencing hospice care during the death of their son Solomon, Harris and his wife have become advocates of Hospice care for the terminally ill in the communities they serve.
BUFFALO — Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul, at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed. When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.
Their expectations were low. “They take your money,” Mrs. Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.”
Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are African-American, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated.
It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks.
Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival.
The racial gaps could widen when Medicare is expected to begin paying physicians in January 2016 for end-of-life counseling, and at a time when blacks and other minorities are projected to make up 42 percent of people 65 and over in 2050, up from 20 percent in 2000.
At the root of the resistance, say researchers and black physicians, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.
Dr. Maisha Robinson, a neurologist at the University of California, Los Angeles.
“You have people who’ve had a difficult time getting access to care throughout their lifetimes” because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. “And then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.”
Federal policies surrounding hospice also arouse suspicion in black communities since Medicare currently requires patients to give up life-sustaining therapies in order to receive hospice benefits.
That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.
Dr. Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”
But now some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups and grief and bereavement ministries.
Dr. Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”
That message recently rang out from the pulpit at God Answers Prayer Ministries, an African- American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone tried a sermon theme on advance care.
“It’s such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out,” she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. “Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!”
In a moment of benediction, Bishop Coates-Stone made a direct plea: “Help us Lord to have the courage to have conversations with our families,” she said, “that will also not leave them wandering and wondering, ‘What should I do in case of the death of a loved one?’”
A gathering of older blacks convened recently by Dr. Robinson in Leimert Park, a middle-class Los Angeles neighborhood, underscored the challenges such efforts still face.
“Hospice has not been a good place for African-Americans, unless you’re in a white facility and usually you’re one of few black people there,” said one woman, who along with others attending the gathering asked not to be identified in order to speak frankly.
That sentiment was greeted by nods from others in the group. “It gets into money,” another woman said. “The treatment is a little bit better, but then there is still the discrimination.”
Advance directives, in particular, are often seen as sinister, a way for insurance companies to maximize profits. “If you say you want at all costs to live, and they say, ‘Well, your insurance company doesn’t allow that,’ then they’re going to pull the plug anyway,” said the host of the gathering, Loretta Jones, 73, founder of Healthy African-American Families in Los Angeles.
To help allay those concerns, physicians need to be more explicit during end-of-life discussions, Dr. Robinson said. “We have to be much clearer about why we’re trying to have those conversations, or we’ll continue to see a pattern of people who really want life-sustaining interventions even when there’s limited potential benefit.”
Camille Wicher, vice president of clinical operations at Roswell Park Cancer Institute in Buffalo, who has studied African-Americans’ end-of-life choices, said hospitals needed to enlist black families who have had good hospice experiences to share their stories with friends and church members.
“That’s how we learn,” she added. “We learn from each other.”
The Harrises are trying to use their experience to carry out that work.
The agony of their son Paul’s death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to hospice care in his parents’ home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death.
As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children.
All the while, parishioners from his parents’ church visited Solomon, amazed to find that hospice was not the grim banishment they had always envisioned.
“One of the members said, ‘I thought you were going to put Solomon in hospice,’ ” Mrs. Harris recalled. “I said, ‘We did.’ ‘Well, when is he going?’ I said, ‘They come here.’ ‘They come to your house?’ ‘Yeah, they’re taking care of him right here.’ ”
There was even time for reflection, as Solomon wrote in a poem called “After Life.”
“Fear death?” he wrote. “No, I await death.”
Solomon died a short while later, but the Harrises say his death has had a lasting impact.
“The people in our immediate circle now view hospice positively,” Mrs. Harris said. “I think our experience was powerful enough that it changed people’s attitudes.”
Mr. Harris, the pastor of Prince of Peace Temple Church of God in Christ, often evangelizes about hospice during his Sunday morning sermons, while Mrs. Harris has enlisted the wives of black pastors in Western New York, known as the “First Ladies,” to counter negative views about palliative care. At a recent meeting, the women discussed older church members who might benefit from hospice, and Mrs. Harris wanted to hear how parishioners in the women’s churches responded to some recent outreach.
“It really opened up people’s eyes to the negative stigma of it, feeling like, ‘I’m just putting my loved one away, and not caring for them,’ ” said Joyce Badger of Bethesda World Harvest International Church in Buffalo. “The power of knowledge that we’ve gained is really going to help our community.”
