Category: Philosophy of Dying

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Poet ponders life on the brink of death

Nina Riggs pens rhapsodic memoir about living with terminal cancer

By Anjali Enjeti

That a writer with only months to live could carve out the time and energy to chronicle her experience of terminal cancer is an impressive feat. That a writer could accomplish this with such exuberant prose as Nina Riggs does in her debut memoir, “The Bright Hour: A Memoir of Living and Dying,” is revelatory. The book, birthed after Riggs’ 2016 essay, “A Couch is More Than a Couch,” which appeared in the New York Times column, Modern Love, captures vivid, dynamic moments, searing truths, bitter ironies and every delicate emotion in between.

Riggs’ great-great-great grandfather, Ralph Waldo Emerson, inspired the book’s title. “That is morning; to crease for a bright hour to be a prisoner of this, sickly body and to become as large as the World.” Riggs, who published a book of poetry in 2009 entitled “Lucky, Lucky,” was a great admirer of her literary ancestor. One particular phrase, “the universe is fluid and volatile,” in her favorite essay of his, “Circles,” helps her to wrap her mind around the parameters of her own mortality. “It allows for the idea that there are things that cannot be contained,” she writes.

Among her most referenced authors in “The Bright Hour,” though, is the 16th century French philosopher Michel de Montaigne, whose five out of six daughters, brother and best friend died prematurely. Montaigne ponders the weight of this kind of grief, and in him, Riggs finds a kind of kinship.

“I love about Montaigne that, despite roving bands of thieves and constant political upheaval, he reportedly never kept his castle guarded. He left all his doors unlocked. He acknowledged the terror that could come. But by considering it and allowing it in, he resolved to live with its presence.”

Riggs’ love of words was fervent, unbridled. She was a scrupulous linguist. The tones and the distinct sounds of syllables aroused in her a deep reflection.

“But the more I think about it, the more I’m struck by what a beautiful word it is – hospice,” she writes. “It is hushed, especially at the end. But it’s comfortable and competent sounding, too. A French word with Latin roots – very close to hospital but with so much more serenity due to those S sounds. (You see, I am growing increasingly fond of the letter S.)”

Her brief, melodic chapters, many only a page long, straddle the genres of prose and poetry, much like Emerson’s do.

Last year, Paul Kalanithi published “When Breath Becomes Air,” a memoir about living with terminal lung cancer. Kalanithi died at age 37, and like Riggs, lived for only approximately two years after his terminal diagnosis. Kalanithi’s book has been widely praised; Riggs herself deemed it “gorgeous.” “The Bright Hour” equals “Breath” in clarity, nuance and artistry. Like Kalanithi, Riggs makes acute examinations of the gradations of autonomy and agency while in treatment, and the ways in which relationships grow and reshape themselves in the face of a finite timeline.

Nina Riggs

“The Bright Hour” is also a precise study of how chronic and terminal illness affects members of the family. Early in the book, at a time when Riggs’ own cancer appears to be a relatively self-contained disease and her prognosis is good (“one small spot,” Riggs repeats like a comforting mantra), Riggs’ mother Jan is in treatment for terminal multiple myeloma. Riggs spends her time in between chemo infusions taking care of Jan. When Jan refuses further treatment, sorrow washes over Riggs. “See: She is dying,” she writes. “It is weird to write that – like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her. Eight years of cancer… My mom: my map, my Sistine Chapel, my ‘Lonely Planet,’ my beautiful ruin, my volcano.”

And it’s Riggs’ mother who, in many respects, models for her daughter the kind of perspective that Riggs later adapts when she learns that her own cancer is metastatic and incurable. “‘Dying isn’t the end of the world,’ my mother liked to joke after she was diagnosed as terminal…There are so many things that are worse than death: old grudges, a lack of self-awareness, severe constipation, no sense of humor, the grimace on your husband’s face as he empties your surgical drain into the measuring cup.”

Riggs was a wife and mother of two young sons, and as her illness progresses, she contemplates, keenly, the beauty and ferocity of the love she has for them. “When you fall in love with your kids, you fall in love forever. And that love forms the exact shape in the world of the cab of a beat-up pickup on the side of the dark highway – filled with safety and Stevie Wonder and okay-ness.” With her dear friend who is also parenting young children while living with terminal cancer, she exchanges hilarious texts about how they might monitor their children from the grave, as if “dying makes us more powerful parents than the living version of ourselves.”

Ultimately, this is Riggs’ magic. She has produced a work about dying that evokes whimsy and joy, one that sublimely affirms that the inevitability of death carries with it its own kind of light and grace. “We are breathless but we love the days,” she writes. “They are promises.”

Complete Article HERE!

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I’m terrified of dying — and, apparently, so are you

Every Sunday Mindy Gillenwater volunteers for hospice care at the Robison Residence. Over the course of four years she as served as a companion to many patients like Kevin Sweat.

by Richard C. Gross

[W]hen I once conveyed concern to my father about his eventual death, his matter-of-fact response was, “We all die.”

And he did. At 89, of complications of pneumonia. Some say it was the best way to greet the hereafter: He went to sleep, into a coma, helped by doctor-administered doses of morphine. Yet when the ambulance initially came for him at the assisted living facility, his light brown eyes widened with fear.

I’m deathly afraid of dying. The idea of no more Richard weighs on me the older I get, and I’m getting up there. There’s so much more to do, so many more people to meet, so much to see, so much to live for, so much more to know. But there is no cure for aging.


 
I learned my fear of dying is not irrational; I have lots of company.

“Death is still a fearful, frightening happening, and the fear of death is a universal fear even if we think we have mastered it on many levels,” wrote Swiss-American psychiatrist Elisabeth Kübler-Ross in her seminal 1969 book, “On Death and Dying.”

Cultural anthropologist Ernest Becker, in his Pulitzer Prize-winning 1973 book, “The Denial of Death,” writes that “anxiety about death is a constant fact of life for everyone and that it is the underlying cause of the many other fears and phobias people experience.” Fears of being alone or stuck in a confined space, for example, are substitutes for fear of death.

Maybe singer Neil Diamond, now 76, expressed those very fears in the lyrics of his 1971 song about loneliness, “I Am … I Said:”

“But I got an emptiness deep inside/And I’ve tried/But it won’t let me go/And I’m not a man who likes to swear/But I never cared/For the sound of being alone.”

Alone or not, one’s mortality and the inevitability of death becomes more real the older we get, especially as relatives, friends and onetime coworkers — people with whom we’ve spent many years — die, shrinking our world, reminding us with a jolt that one day we will join them. Attending funerals becomes commonplace.

Seeking others for opinions about the fear of death, I attended a 90-minute seminar, called “Santa Fe Doorways,” hosted by Denys Cope, a registered nurse for nearly 50 years, including about 30 of them in hospice care. About 30 elderly people attended, all but three of them women; we sat in a wide circle in a windowless room in a retirement home.

Ms. Cope said, “We are all hard-wired to fear death,” and threw out a question: “When you think about death, what matters to you most?”

“To be able to die resting in God’s mercy,” replied one woman, acknowledging she is Christian.

Deep faith in one’s religion must be potently comforting, providing virtually certain assurance of peace as death approaches, perhaps, as another woman said, because of an abiding belief in an afterlife. Enviable. And for the secular among us?

One white-haired man, who experienced a near-death episode, approached the subject lightheartedly, maybe because he appeared so organized. He said he since has written his own obituary, letters to his loved ones and has paid for his cremation. This is a man who will meet his maker head-on.

Another woman took an amazingly positive approach toward death, reveling in its opposite: life.

“What I love about death is thinking how I’m going to live,” she responded to Ms. Cope’s question.

I’m not as sanguine and stubbornly turned back to Becker’s “Denial of Death” to reinforce my feelings about dying. For me, he hit a bull’s eye:

“This is the terror: to have emerged from nothing, to have a name, consciousness of self, deep inner feelings, and excruciating inner yearning for life and self-expression — and with all this yet to die. It seems like a hoax.”

Ms. Cope has another way of looking at death.

“When first faced with the fact they are dying, many people experience a tremendous amount of fear,” she wrote in her 2008 book, “Dying: A Natural Passage.” “Often, I am told, it is not death but the process of dying that is frightening. … As long as we remain attached to this world and to our life, it is a struggle to die. … When we surrender to the process of dying, there is an incredible inward flow of peace and grace.”

I hope I can surrender.

Complete Article HERE!

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Helping Hands Offer Support at the End of Life

A growing network of ‘death doulas’ is gaining popularity while caring for patients and their families.

By Mary Kane

[E]lena Wertheimer still remembers the panic she felt last year after her terminally ill father, Vincent Battista, was released from the hospital to spend his last days at his Wyckoff, N.J., home. She didn’t know how to prepare. She wasn’t sure how to care for him—or herself. “It’s hard to think straight,” she says. “You’re under extreme stress.”

On the advice of friends, Wertheimer sought help from an end-of-life doula, a new type of caregiver for dying patients and their families. Also known as death doulas, they offer support through all the stages of dying, similar to the roles that birth doulas play during pregnancy and delivery. Doulas discuss a dying person’s wishes and concerns, and they create memory books for the family. They organize vigils and coach relatives on the signs of dying. Some run errands, organize paperwork or even plan home funerals.

Wertheimer, 49, was very close to her father, and her doula, Janie Rakow, helped her overcome her fear of watching him die. Rakow encouraged her to sit with him and hold his hand. Rakow gently guided her to his bedside after he passed, and Wertheimer and other family members spent four hours there, crying, laughing and telling stories. Rakow ensured they weren’t interrupted. “It was very, very special,” Wertheimer says. “I saw him finally not suffering. My last vision of him was peaceful. It made all the difference in the world.”

Doulas are gaining in popularity amid a growing effort to improve the end-of-life experience for patients and families, particularly when someone dies at home. Doulas cover “a huge gap” in time and resources that busy hospices can’t always provide, Rakow says. A hospice team advises families on medical care for the dying; doulas guide the dying and their loved ones through the end-of-life process, offering mostly emotional and other nonmedical support.

Finding a Doula

If you’re thinking of using a doula, you may find the search confusing. There are death midwives, mourning doulas, death coaches and more. Some are volunteers; others charge hourly rates of $25 to $100 or offer “Vigil Packages” costing $1,000 and up. There is no regulatory oversight or standard licensing, training or certification. “It’s still kind of the Wild West out there,” says Patti Urban, a doula in Guilford, Conn.

Insurance typically doesn’t cover costs for a doula. Before hiring one, check whether your local hospital or hospice has a volunteer doula program. But be sure the doula can provide all the hours you want.

The International End of Life Doula Association (www.inelda.org) is compiling an online state-by-state directory of doulas it has trained. The nonprofit has provided the training for hospitals and hospices in California, Indiana, New Jersey and New York, and it will train aspiring doulas in 12 cities this year, says Rakow, the association’s president. Doulas will also work with you in hospices, hospitals, assisted-living facilities and nursing homes.

Decide what you want from a doula. Do you need someone to organize end-of-life documents? Or to provide a 24-hour presence at the bedside? Set up a consultation, advises Merilynne Rush, co-founder of the Lifespan Doula Association, in Ann Arbor, Mich. Be sure your doula’s personality is a good fit. You might prefer a take-charge attitude or a soothing presence.

Most doulas charge an hourly rate. Start out with a few hours before making a larger commitment, Rush says. Ask for a contract spelling out services and fees.

Review a doula’s qualifications and training, including criminal background checks and previous experience. Some attend weekend seminars, while others serve a minimum number of vigil hours and pass exams to become certified.

Other groups that train doulas include MourningDoula.com and the Lifespan Doula Association, which details standards of practice at www.lifespandoulas.com. Doulagivers.com offers a free webinar to learn the basics of caring for a dying loved one.

Complete Article HERE!

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End-of-life care: when CPR is wrong

Pursuing treatment a person has declined represents questionable ethical practice

CPR is the appropriate response when someone has a cardiac arrest, but it has no role in the patient who slips away naturally at the end of a long illness.

[T]he modern intensive care unit offers a wide range of life support mechanisms so that even the sickest person with multi-organ failure can be kept alive. Parallel to this, the media, and television in particular, has removed any veil of secrecy that may have existed about emergency and intensive care medicine. But it may also have raised expectations to an unreasonable level, with evidence to show that the public perception of the role of cardiopulmonary resuscitation (CPR) is not a realistic one.

The inappropriate use of CPR in certain end-of-life situations has been highlighted recently in medical literature. CPR is the appropriate response when someone has a cardiac arrest. However it has no role in the patient who slips away naturally at the end of a long illness. Senior clinicians have expressed concern that doctors who are called at the time of death feel they have no authority to withhold CPR, or they fear the legal risks of doing so – even where CPR is clearly pointless. As a result, patients with terminal cancer or end stage dementia are being vigorously resuscitated rather than allowed to die naturally.

However, this newspaper has uncovered another questionable aspect of end-of-life care. Responding to recent column, readers have described how patients who had clearly and formally indicated they did not wish to be resuscitated were in fact given CPR. In most cases, the treatment failed, but relatives are being traumatised – firstly by having their concerns pushed aside and then seeing their loved one’s body bruised and broken as a result of vigorous CPR.

In some cases this is happening despite having properly drawn-up advanced care directives present in the patient’s chart. In addition, many charts have DNACPR (do not attempt CPR) stickers prominently displayed on their front covers.

Whatever about the legality of ignoring a patient’s wishes in this way, pursuing treatment the person has declined represents questionable ethical professional practice. Healthcare regulators must take steps to address this breach of trust as a matter of urgency.

Complete Article HERE!

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I’m Dying Up Here: Books on How to Grieve and How to Die

By JUDITH NEWMAN

[I]’m never going to die. I’m sorry I can’t say the same for you. My role models for how to do death are Jesus and Wile E. Coyote. Yours are other dead people. However, because I’m never going to die, I’m super comfortable with the entire topic, and the fact that I’m late turning in this column on books about death and dying has nothing to do with avoiding the subject.

So an author who suggests the dead are not howling in the abyss but rather hanging out in what she imagines as a pretty “waiting area” — well, that’s an author who’s easy for me to love. Theresa Caputo’s television show, “Long Island Medium,” has been a mainstay on TLC, and in GOOD GRIEF: Heal Your Soul, Honor Your Loved Ones, and Learn to Live Again (Atria, $25.99), Caputo (with her co-writer, Kristina Grish) wants us to know what she has learned from all those years of channeling the dead: “It’s their greatest hope that you learn to heal and carry on.” The dead — or Spirit, as she calls them — are quite chatty and opinionated. Among the things Spirit wants you to know:

Your relationship with your loved one isn’t over; it has merely changed. (Even if the loved one can’t drive you to the airport, if you ask nicely Spirit might “help you get a cab.”) You can let your feelings rule you for short periods of time, but “you must also take active steps to heal.” (Spirit doesn’t like whiners.) When it’s your time, it’s (usually) your time, or at least in the “destiny window” of time. Caputo has a host of practical, rather adorable ideas for honoring Spirit, which often involve giving gifts to others in Spirit’s name.

After a while it occurred to me that if the departed behaved in the loving way Caputo describes, I would like them more when they were dead than when they were alive. No matter; I am entirely agnostic, and still found this book comforting and quite touching. I felt oddly close to my own dead parents as I read along.

Those whose loss is more recent may prefer a less warm and fuzzy approach — more of a “what can I do to get on with my life right now?” book. Resilience is a hot topic these days, and Lucy Hone has written a book about bereavement reflecting both her own research and her own grief. RESILIENT GRIEVING: Finding Strength and Embracing Life After a Loss That Changes Everything (The Experiment, paper, $15.95) begins with Hone’s own tragedy: In 2014, her 12-year-old daughter was killed in a car accident. Hone shows us how to harness the (thankfully common) power of our own resilience to work our way through a horrible loss.

Resilience is not a shield against suffering, Hone suggests. It enables us to feel and to move through emotions like pain and guilt so that we can continue to feel alive and experience happiness. Hone does not buy into the idea that you just feel your feelings and take all the time in the world; what if, like Hone herself, you have other kids at home, a demanding job, and an urgent need to function in the real world? Hone offers concrete strategies for regaining your equilibrium even in the greatest pain. Among them: Choosing where to focus your attention (not on hating someone or something, which consumes energy); taking your time with the body of the one you love (there is no mad rush to bury or memorialize beloved); and re-establish routines, particularly if you have children, who may need that structure even more than you do.

Despite her insistence to the contrary, there is a strong whiff of “just-get-on-with-it” matter-of-factness that may be a little beyond some of us. Patrick O’Malley’s GETTING GRIEF RIGHT: Finding Your Story of Love in the Sorrow of Loss (Sounds True, paper, $16.95), co-written by Tim Madigan, is for those of us made of less stern stuff. O’Malley was trained as a counselor, but when he lost his infant son, and he tried to work through the famous Kübler-Ross stages of grieving — denial, anger, bargaining, depression, and finally acceptance — he felt like a failure. Grief was not linear; it was more of an oscillation. O’Malley wanted to talk about his son, to tell others who his son was, even in the few months he was on this earth. He began to see the wisdom of the writer Isak Dinesen, who noted, “All sorrows can be borne if you put them in a story or tell a story about them.”

O’Malley gives us the tools to tell the story of the deceased: favorite memories, when he or she was happiest and saddest, how you learned about the death, and so forth. Different kinds of loss bring different stories, and different kinds of pain. Telling the story of how you loved and how you lost gives shape and meaning to what first seems to be a meaningless, uncontrollable event.

For a compelling argument for why we have to rethink the wisdom of end-of-life “heroics,” there is EXTREME MEASURES: Finding a Better Path to the End of Life (Avery, $27). The author, Jessica Nutik Zitter, is a physician who specializes in both critical care medicine and palliative care, the yin and yang of medicine. Critical care specialists are taught to save lives with all the technology and machinery at their disposal. Palliative care specialists need the opposite skill set: They have to know how to help a dying person let go. Zitter is trained in both.

Of course, it was not always thus. Dr. Zitter describes her first Code Blue as a resident. She rushes into the room to heroically save the patient, and instead she is asked to resuscitate someone who is clearly dead, or should be. “With each compression, there is a sickening click, which I don’t recognize until I hear someone next to me whisper, ‘His whole chest is breaking,’” she writes. “This man is dead.”

The patient stays dead. But in that moment Zitter realizes that there must be a better way to depart this earth. She also discusses how palliative care can respond to many of the most painful symptoms of dying in a way that care geared toward prolonging life cannot. And why, at the end of life, less is often more compassionate. Like Atul Gawande’s “Being Mortal,” Zitter’s book shows how knowing when to do nothing is as vital to being a good doctor as knowing when to do everything.

As compared to the more philosophical “Extreme Measures,” John Abraham’s HOW TO GET THE DEATH YOU WANT: A Practical and Moral Guide (Upper Access, paper, $14.95) is exactly as nuts and bolts as it sounds. Abraham, a thanatologist and Episcopal priest, writes extensively about advance directives and how to ensure your wishes are abided by; and then, he tells us the least painful and messy ways to go. It may not be easy to read about these methods, but they affirm the idea expressed by a popular button worn by Abraham and other members of the Final Exit Network — “Let me die like a dog” — because anyone who has ever had to euthanize a beloved pet knows how painless and peaceful death can be. Those of us who fear loss of control of our lives more than we fear death will find Abraham’s book edifying. I even appreciate the phrase he uses instead of assisted suicide; he prefers “deliberate life completion.”

Knowing Nina Riggs died shortly after writing THE BRIGHT HOUR: A Memoir of Living and Dying (Simon & Schuster, $25), the story of her experience with metastatic breast cancer, makes this moving and often very funny memoir almost unbearable to read. But that’s because it is not one bromide after the other. It is true, and it might crush you. There is one moment here that says everything about how lonely you can feel when you’ve been told you have a disease. It’s past midnight, and Riggs and her husband are lying in bed: “‘I just can’t wait for things to get back to normal,’ says John from his side of the moon.” Riggs realizes there may not be a “normal” anymore, and reacts with anger, and a growing resolve that we all wish we could achieve: “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other.”

I’ll just say this: You can read a multitude of books about how to die, but Riggs, a dying woman, will show you how to live.

Complete Article HERE!

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The truth is that death and life are the same music

The terrain of dying is so swampy, too. We’re afraid of getting drawn into the quicksand of offence and emotion.

By Hilary Harper

[A] friend talked to me recently about his wife’s dying. Not her death, though it’s close, but the process of her dying, which has been going on for years and has undergone many changes. They have four children, and it is hard. It’s cancer, and it’s not being kind. It has metastasised into her brain, affecting her memory. She can’t walk more than a few metres. It stills her hands when she wants to draw or play music. But what made his tears well up was not the hard things, but what they were learning as her dying unfolded.

“It’s …” he hesitated. “It’s beautiful.” He seemed surprised, as if he ought to be ashamed of saying something so antithetical to how people imagine dying is. We think it’s dark and ugly; embarrassing, like poverty or bad breath. It’s inescapably physical: you can’t buy your way out of it or network yourself away from it or neutralise it with intellect. It’s not aspirational. It’s the ultimate failure, the inability to hold onto something most of us take for granted every time we inhale.

The terrain of dying is so swampy, too. We’re afraid of getting drawn into the quicksand of offence and emotion. What if we say the wrong thing? What if we accidentally tell the truth about something it might be kinder to lie about, at the end? I lost two babies mid-pregnancy, and after that, something fell away from me, some weight about death. Now I feel like a strange emotional carrion crow, settling my wings next to the grieving or bereaved, comfortable in the miasma of sadness and loss. I’m much better at listening. I was happy to talk to my friend about his wife’s dying, because he wanted to talk about it, and because it is a beautiful story, but also because it calls out to my grief, which has softened but not diminished.

He still works a few days, and he’s organised a roster of friends and neighbours who make sure his wife is OK and has everything she needs within arm’s reach. The kids spend a lot of time at home, experiencing their mother’s long last days. Part of his wonder and gratitude come from the fact that the family is sharing their experience. My friend knows that people who care are there when he can’t be, and that life, in some sense, is going on. Music is being played, and heard.

And the rest of the joy I saw sprang from his sense that his wife was stripping back the unnecessary things from life, the pettinesses and distractions, and becoming more prepared for death. She was remembering old arguments and tensions, wondering why she’d ever thought them worth the effort, and letting them go. “It’s like we’re falling in love all over again,” he said. It’s tempting to think of this as a parable for death being able to renew life, to spark a fresh fire of living even in those close to it. But the truth is that death and life are the same music, played for the same ears, but heard differently depending where you’re sitting. Some only hear the tuning up. My friend and his wife are hearing the whole orchestra, swelling to the climax.

Complete Article HERE!

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This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide

Nursing professor Cathy Campbell aims to expand palliative care practices in places around the world where it’s existed only informally.

By Christine Phelan Kueter

[E]ach week, as she sits at the bedside of dying patients, University of Virginia nursing professor Cathy Campbell remembers the bad old days of end-of-life care during her early nursing practice in the mid-1980s.

Staff didn’t know how to treat patients, their bodies addled by pain and disease, and treatment had less to do with pain management than with beating back deadly illnesses, she recalled. Even for patients who were moments from passing away, there was great reluctance to offer relief with drugs like morphine and Demerol, so as not “to hasten death.” But death in hospital intensive care units, with wires and tubes snaking from patients’ every orifice, was painfully common.

“There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress.

Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

“This is what I want to do, where I want to be,” said Campbell, a nurse for 31 years and a palliative care scholar for 25. “The day of death is one day, but there are a lot of other days to provide support in between.”

But if palliative care has more recently expanded into America’s consciousness, beyond our borders its practice is spotty at best, and absent at worse. That absence is felt most acutely in the world’s poorest, most rural regions where chronic illness and death from diseases like HIV and AIDs, malaria and tuberculosis are common.

In many areas, palliative care is anemic due to too few providers. In South Africa, for instance, the patient-nurse ratio is 417-to-1, a reality that pushes many tasks onto community health workers who provide the majority of rural patients’ care. Among those workers – local individuals, some trained, who do home visits and provide a conduit to nurses in charge of vast geographic territories and literally thousands of patients – palliative care knowledge is even less common.

Most community health workers have basic training in bathing and turning bed-ridden patients; perhaps know how to take vital signs, like blood pressure and pulse; and may, too, know something about vectors of disease transmission for some of the region’s most deadly diseases, including tuberculosis and HIV. But palliative care, Campbell said, is “learned on the fly,” even as it’s an increasingly robust part of their job.

Those gaps in knowledge are due to the fact that palliative care concepts haven’t become fully integrated into overseas’ nursing curricula. It all adds up to a perfect storm, Campbell said, even in this era when the World Health Organization has declared access to palliative care “a human right.”

Given these twin realities, Campbell said, a movement to buttress community health workers’ education, skills and reach is afoot, and Campbell is in the thick of the march. She just received a two-year Fulbright Scholarship to augment the bare-bones understanding of palliative care as it exists in two rural provinces of South Africa and Thailand, and how best to broaden it with the support of community health workers.

Campbell’s years of work as a faculty mentor and researcher at UVA’s Center for Global Health have provided invaluable insight into the many issues and tremendous potential of community health workers in rural communities. This summer, Campbell will mentor a team, in collaboration with colleagues at the University of Venda, of Center for Global Health University Scholars for a fourth year of longitudinal research on community health worker engagement in community care.

With the Fulbright, Campbell and her UVA research assistants will conduct focus groups with 60 rural community health workers across Thailand and South Africa to discuss the cases they see and document how they handle them, in order to determine what types of educational and training programs make the most sense. Their ultimate aim is to expand palliative care practices in places where it’s existed only informally.

Campbell has already observed community health workers’ appetite for training in palliative care in particular – “they’re eager for it,” she reports – and in many cases, the most experienced and seasoned workerss are likely to receive training and education and then return to their peers to train them.

Community health workers, Campbell said, are the linchpin to expanding developing nations’ palliative care reach into the rural communities that need it.

“We can train CHWs to do more, because they’re really the ones doing the work,” Campbell said. “They’re a community treasure.”

Complete Article HERE!