06/25/17

End-of-life care: when CPR is wrong

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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.

The 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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06/23/17

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

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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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06/22/17

The truth is that death and life are the same music

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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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06/21/17

The New Stages of Grief: 5 Tasks, No Timeline

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What bereaved survivors wish they’d known about the grieving process

Bereaved people often brace for the so-called stages of grief, only to discover their own grieving process unfolds differently. The stages of grief — popularized from earlier theories put forth by Elisabeth Kübler-Ross in her 1969 book On Death and Dying, and later modified by others — initially described responses to terminal illness: denial, anger, bargaining, depression, acceptance. While some find those responses relevant to coping with death, psychologists increasingly believe that the idea of “stages” oversimplifies a complex experience. And grieving survivors seem to agree.

“When we’re confronted with emotional chaos, we yearn for clarity, and the Kübler-Ross stages of grief serve as a kind of road map,” says Robert Neimeyer, a professor of psychology at the University of Memphis who studies grief. “But it’s more accurate to think about phases of adaptation rather than stages of grief. And they overlap rather than fall in sequence.”

No two people mourn the same way. The grieving process is shaped by one’s relationship to the deceased and the nature of the death, Neimeyer says. For example, “non-normative losses” — sudden or untimely deaths (accidents, homicides, deaths in youth or life’s prime) — tend to trigger more intense anger and disbelief, and longer depression.

What all survivors share: Death presents challenges, from processing the loss and coping with grief symptoms through reformulating a relationship to the late loved one — tasks that can take months and years to work through.

Grief task #1: Acknowledging the Reality of Loss

The finality of death is always a shock, even after a known terminal illness. After helping her 62-year-old husband battle a brain tumor for four years, Maureen McFadden thought she’d girded herself for his eventual passing. “A nun warned me that for all the pain I’d already gone through, I would not be prepared for what grief is. She was right,” says the Brooklyn, New York, widow. “Even though I understood the outcome when he was first diagnosed, I had no idea that I was still hoping. When someone dies, you’re just not prepared for that, because humans don’t know how to live without hope.”

It wasn’t until after the busy period of nursing, funeral planning, and the memorial services that the truth struck — “as if I’d been shot,” McFadden says. Later, one of her husband’s physicians told her that people who are constantly at a dying loved one’s side often have the hardest initial response. “He said they seem to hold an unarticulated belief that just by virtue of their presence and determination, they will keep the person alive,” she says. “The eventual death seems like a terrible failure.”

Accepting that death is real (and not your fault) isn’t the same as being OK with it. It merely means absorbing the truth of what has happened. This can be as difficult and painful as smacking through the first high breakers at the ocean’s shore. For some people, acknowledgment happens quickly; others remain in disbelief for months or years (or experience disbelief in periodic bursts).

What helps:

Experiencing the rituals of death. Lise Funderberg and her sisters allowed someone else to organize a quick memorial service because “we were so out of it, floating in Jell-O.” Looking back, she wishes they had done it themselves. “We didn’t even put anything in the papers. I wish we had known how a ritual of closure is really important for everyone in the community of the deceased, everyone who loved him,” says the author of Pig Candy: Taking My Father South, Taking My Father Home. “It’s not like we would be doing another one.”

Knowing there are no shortcuts through grief. “Grief can begin even before death, during caregiving. But grief doesn’t end until we do,” says Sherry E. Showalter, a social worker in Tarpon Springs, Florida, who’s the author of Healing Heartaches: Stories of Loss and Life.

Practicing your faith traditions. Some research shows that survivors with a spiritual life tend to absorb grief more quickly, possibly because — psychologists believe — people who eventually find meaning in loss are generally better able to cope with it.

Grief task #2: Weathering the stress of separation

Mourning brings many physical and emotional hallmarks: crying, being unable to cry, sleeplessness, not eating, numbness, feeling forlorn, withdrawing socially, and so on. The exact mix is different for everyone.

Anger is a common response, especially to a violent or untimely death. “My anger was so primal and intense, that this good person, my dad, had to die. It was illogical. I was mad at the world. I even thought, ‘Why couldn’t it have been my mom?’ who was already sick and not a contributing member of society,” says Harriet, a San Francisco producer whose father died at 69 after a cancer diagnosis.

Intense emotions can be a way to “hang on” to the deceased person, bereavement counselors say. It’s a tangible connection to the person who died. “It feels like power, like life,” one widow says of her white-hot anger. Letting go of the emotion, or learning to live with it, can feel like letting go of the person who died. Naturally, there can be a built-in reluctance to do that.

Another confusing emotion: Relief. “I felt horribly guilty that I was so relieved when my mom died,” says the daughter of an alcoholic. Caregivers, for example, often feel surprise (and, in turn, guilt) that they feel a lifting of a physical and/or emotional burden when caregiving ends. This is a natural response that’s separate from the sadness of losing the person. It’s entirely possible, and normal, to feel two such different emotions at the same time.

What helps:

Letting yourself experience turbulent emotions rather than shutting them down. “Wallowing is good,” says Cherie Spino, a mom of four in Toledo, Ohio, whose mother was killed at age 69 by a drunk driver. “You have to go through it, dwell on the person and your sadness, cry.”

Redirecting anger. Within a few years of her dad’s death, Harriet, the producer, “used my rage to fuel my passion” for a new project about cancer.

Asking what the deceased person would suggest. Maureen McFadden, whose husband died of a brain tumor, says she partly transitioned out of anger when the thought struck her, “What would Jim want from me?”

Reading about others’ experiences. Literature about grief can point out common threads. Survivors often point to Joan Didion’s The Year of Magical Thinking and A Grief Observed, by C.S. Lewis.

Seeking bereavement support. Professionally led support groups or individual counseling provide skilled guidance as you navigate confusing or painful emotions. The goal isn’t to make the feelings go away but to help you embrace their purpose. Some people are ready immediately for this kind of help while some come to it long after the loss, and others do fine on their own.

Grief task #3: Adjusting to Everyday Life After a Loss

After the funeral and burial, mundane life patterns such as shopping and working must eventually resume, now in altered form. “Everyday life” often leaves survivors experiencing long-term reactions on top of the more familiar emotional and physical manifestations of grief.

Most common: yearning (intense longing for the person who has died), stress, and depression. These can prevail whether the relationship was happy or turbulent.

“Whatever unresolved issues you have, they get magnified and are elusive at the same time; you feel alone in the world,” says Ellie, whose parents and sister all died within five years. “I felt so isolated in my grief.”

What helps:

Not rushing yourself. “Being without my parents knocked me down and kept me down for a long time; it was as if something had been severed in me,” says Ellie. “Time and new experiences helped, but it was mostly a matter of putting one foot in front of the other.”

Ignoring the “grief police.” Don’t let others rush your adjustment. Turn a deaf ear to the well-meaning comments people make that miss the mark — including “It’s time to move on.”

Getting help as needed with practical tasks. Handling finances, cooking, yard work, and so on can swamp a bereaved person, especially if they’re unfamiliar duties. This just adds to stress and prolongs pain.

Inching toward new ways of doing things. One woman who had a standing Saturday morning long phone call with her late mother felt bereft at that hour each week. “I switched my walking time to then and called my sister while I walked, which shook up my routine and dulled the pain.”

Not expecting you can medicate the pain away. Antidepressants have a place in helping someone who has a chemical imbalance causing depression. But antidepressants can also impede the grieving process, and they can’t remove the yearning that’s associated with depression. The goal should be to think about the deceased with less pain, over time, and to derive a measure of comfort from such thoughts.

Grief task #4: Revising your relationship to the deceased

Your relationship to the person who died doesn’t end with his or her death; it changes. “The goal of grieving is not to let go but to find a way to hold on with less pain,” Neimeyer says.

Simon Ruben of Israel’s University of Haifa describes the grieving process as being “two-tracked,” with two processes happening simultaneously. On one track, we cope with the visible symptoms and emotions (anger, depression, sleeplessness, and so on). On the other track, less obvious but equally important, we’re working to reframe our relationship to the loved one who has died.

Nobody forgets a loved one. The question is, how do we hold him or her in our memory, our rituals, and our conversation in a way that’s manageable, possibly even comforting, rather than painful?

What helps:

Reminiscing aloud. “Loss is so taboo in American culture. You’re supposed to have a funeral and move on,” says Jennifer Amandari of Los Angeles, who lost her mother when she was 16 and then lost an infant daughter six years ago. “But not talking about the person stunts your ability to heal and work the loss into your life.”

Having your grief witnessed. When psychologist Robert Neimeyer’s teenage son got choked up at Thanksgiving on realizing he was seated in his late grandmother’s chair, the table conversation came to a halt. Rather than rushing the awkward moment, someone shared his own memory of her. “We all began to recall ‘Gloria stories,’ and it was a beautiful moment that allowed us to continue a connection to her,” Neimeyer says.

Reflecting on the legacy of the person who died (alone or with others). How did he or she inspire you? What was his or her life’s meaning and purpose? Questions like these help shape a perspective on the seeming meaninglessness of death.

Following rituals that celebrate or honor the deceased. Victorians made an art of the rituals of remembrance, from wearing black and jewelry made from the hair of the deceased to producing funeral cards and postmortem photography. Such traditions help survivors maintain a connection and continuity. Family members join Lisa Byers of Toledo, Ohio, on an annual visit to the grave of her late husband, who died of a heart attack at age 46. Patti Anderson, who lives in Cincinnati, joins her out-of-state sisters in annual trips for their mother’s birthday. They’ve turned it into a memorial to her, complete with a special dinner devoted to reminiscing. Another family sends balloons aloft on the anniversary of their father’s death — followed by a dinner at his favorite restaurant.

Creating a memorial. Cherie Spino and her sisters plan to make a wall hanging from scraps of their mother’s clothing that they’d saved. Others have found solace in creating scrapbooks or PowerPoint presentations with old photos, symbolically lighting a Caring candle and posting a dedication, or planting a tree or garden.

Grief task #5: Rewriting the storyline of your life

“Grief is more than an emotion; it’s a process of reconstructing a world of meaning that’s been challenged by loss,” psychologist Neimeyer says. When our life is closely entwined with another’s, and that person dies, it’s as if a main character in a book dropped out. How can future chapters be rewritten so the book makes sense?

And yet there must be a rewrite, because life is a narrative. An important part of grieving is to gain a perspective on the meaning of the loss and to reconstruct a world in which you can live effectively afterward. Who will now do the things that your loved one once did for you? Who will you confide in about your promotion or your child’s first steps? Will you ever be able to walk into a hospital or nursing home again? Be able to love again? How has the meaning of your life changed?

One challenge: This involves integrating the reality of death into a cultural system that likes to pretend death doesn’t exist.

What helps:

Finding compassion in the workplace, one’s place of worship, and social organizations. It can be incredibly useful to reintegrating into life after a loss to have it acknowledged, rather than ignored without comment. Example: a manager stepping forward to say, “I’m sorry for your loss; let’s talk about what you feel like tackling now.”

Putting your life story on paper. Neimeyer has his patients write the chapter titles of their life stories. Then he asks them to reflect, in writing, on specific questions: How did you organize the flow of your self-narrative? What are the major themes that tie it together? If you were to give a title to your self-narrative, what would it be?

Recognizing that you’re not the same person as before. Losing any loved one is a transformative experience. Expect and embrace change, rather than avoiding it and expecting to return to your “old self.”

Expecting the intensity of your grief to vary. “Whenever I go to a funeral, I cry and cry now — for my own loss,” says one woman. Mother’s Day, birthdays, and anniversaries can ignite surges of depression years later — or there may not even be an obvious trigger.

Being open to help. It’s worth noting that there may be a syndrome called complicated grief, in which grief reaches a point where therapy can be useful. Is prolonged grief a new psychological disorder? Many psychologists now think so and want to see it become a recognized disorder. But more relevant than labels is being open to help if you feel stuck.

A “Happy” Ending?

Important point: Completing these five tasks doesn’t “end” the grieving process. They may never be fully completed. Grief isn’t a disease, after all; it’s a transition.

“Grief is like a room we may enter or leave again and again, for years,” psychologist Robert Neimeyer says. “The character and quality of grief may change across time, but it remains available to us as a resource that we can revisit.”

That positive word, resource, is a deliberate choice: “Being able to revisit earlier losses and their implications for us can enrich our lives and make our narrative more coherent about who we are and how we got to be who we are,” Neimeyer adds.

“I still feel such a sense of loss,” says writer Lise Funderberg of her father’s death in 2006. “But qualities of that experience were incredibly moving — the compassion and charity shown to me and witnessed by me. It’s strange to hold two opposing ideas in your head: that an experience can be horrible and yet have good effects. Things were stirred up by my dad’s dying that are pretty incredible and life-affirming. I now know that if you’ve loved a person, you will always grieve them. It just changes over time.”

Complete Article HERE!

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06/19/17

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

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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

Each 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!

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06/17/17

The things dying people care about reveal a lot about how to live

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In the end, only one thing matters.

By Corinne Purtill

Ask people to imagine what they’d say if they knew they were dying and most would have words of sadness, fear, and regret. But new psychological research bolsters what chaplains, hospice workers, and others who spend a lot of time in the company of those approaching the end of life have long known: the process of dying is a complicated one, with room for moments of profundity and light alongside fear and darkness.

In a series of experiments documented in the journal Psychological Science, researchers compared the blog posts of terminally ill people and the last words of death row inmates to the words of healthy people asked to imagine themselves writing near their death.

The people actually approaching death used more positive terms and fewer negative ones to describe their emotions than those imagining the experience. In the blog posts—all from real people who eventually died from their disease—emotions grew more positive as death approached.

It’s not a perfect study—people with unspeakable regrets or fears may be less inclined to publicly chronicle their final days than those who do not. But there are a few reasons why death may be more terrifying as a distant abstract than an immediate reality.

People tend to overlook or discount the psyche’s ability to adapt to new circumstances when imagining the future, according to research from the Harvard University psychologist Daniel Gilbert. Because we don’t properly account for our own resilience when envisioning future calamities, we tend to think that we’ll feel sadder, for longer, than we actually do.

Even amid the trauma of a terminal diagnosis and the discomforts of the dying process, the mind can adapt to find pleasure in the comforts available. And when we believe we have less time to live, whether due to age, illness, or external threat, we subconsciously adjust our priorities to favor those things closest to home. Research has found that old people, young people with serious diagnoses, and people living in uncertain political climates vastly prefer time with old friends and family over new contacts and experiences. The depth of these connections bring meaning to the final days of life in a way that can be hard for healthy people in an externally-focused, future-oriented mindset to comprehend.

It’s inaccurate to portray the close of life as a universally positive or peaceful experience. “We die the way we have lived,” says Barbara Karnes, a hospice nurse who has written extensively on the dying process. “I think it is human nature to look for love, connection, and meaning. We don’t necessarily have to be dying to do that. Dying gives us the opportunity, the gift of time, to reach out, but many do not take that opportunity.”

Death focuses us on what we care about most. But we don’t have to wait until the end is imminent to live as if each day matters.

“If there is any great difference between the people who know they are dying and the rest of us, it’s this: They know they’re running out of time,” Kerry Egan, a Harvard Divinity School-trained hospital chaplain, writes in her book On Living. “They have more motivation to do the things they want to do, and to become the person they want to become…. There’s nothing stopping you from acting with the same urgency the dying feel.”

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06/13/17

What will your last words be?

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Legacy therapy helps dying patients tell their stories

Storytelling can help terminally ill patients find closure. Linda Johnson and Brandi Snider share stories at Hinds Hospice in Fresno​.

Maureen Cleveland inhaled deeply as she recalled the scent of the fresh tomatoes that her father brought home each summer from the cannery where he worked. The thin 60-year-old woman, who’s battling late-stage breast cancer, talked for an hour in her Carmichael home, smiling almost constantly as she described picnic days with her family of seven and other scenes from her Bay Area childhood.

Visiting hospice chaplain Connie Johnstone listened intently from the foot of the bed, egging Cleveland on with questions and scribbling down the occasional quote.

Johnstone, who works for Kaiser Permanente in Sacramento, has studied the art of conversing with the dying. She calls it life review; others in her field call it legacy therapy or dignity therapy. The point is coaxing out a patient’s most intimate memories and threading them into one last story, often to be recorded for family and friends. For aging baby boomers and others struggling with terminal illnesses, the therapy offers a new way to ease the pain of facing death.

“It’s a real important thing to have a witness to one’s life toward the end,” Johnstone said in her slow, Southwestern drawl. “It’s to have it confirmed to us. If we say it, and we get to look at it again, it gives it substance, space, importance.”

Dignity therapy has gained traction in recent years as hospitals, hospice organizations and palliative care centers look for drug-free ways to pacify patients. It involves multiple 30- to 60-minute question-and-answer sessions, usually conducted by a psychologist, social worker or trained chaplain.

Dr. Nathan Fairman, a UC Davis palliative care psychiatrist who has written about interventions for the dying, said life review stands out from other types of talk therapy because it produces a concrete document that helps the patient reflect and find closure.

“The therapist draws out the parts of their story that have to do with meaning and purpose and relationships so that they can leave the legacy they want,” he said. “You’re looking for the themes that will focus the patient’s attention on the sources of meaning in their life.”

Surrounded by books and photographs in her house, Cleveland spends her remaining days reading, taking in sun from the backyard, watching her young nieces play and telling stories to whoever will listen, she said.

“I’m pretty social, so anyone who walks in here gets stuck talking to me,” Cleveland said during a recent visit. “You need to share what you know, or it’ll disappear.”

Johnstone chooses her questions wisely, often revisiting themes from previous sessions. She remembers little details about her patients’ lives — where they were born, how many children they have, their mothers’ names and occupations. The small talk helps her segue into more difficult topics, such as estranged family members or traumatic experiences.

While it’s usually too late for righting wrongs or seizing missed opportunities, speaking to a stranger can help patients accept the past and feel a sense of calm near the end, Johnstone said.

“Everybody carries some kind of regrets,” she said. “You can’t put the genie back in the bottle. Once you’ve brought something out, it can’t keep recycling in the same way.”

Many patients feel isolated toward the end of life, and are reluctant to lean on loved ones for help, Fairman said. Between 15 and 20 percent of terminally ill patients are diagnosed with major depression, according to the American Psychological Association.

In a clinical trial of 100 terminally ill patients who received dignity therapy, 68 said they felt an increased sense of purpose after the treatment and 47 said it increased their will to live. Eighty-one patients said the intervention was helpful to their families.

“They feel if they share too much with loved ones it will burden them, so they withhold sharing things,” Fairman said. “In a situation like that, it can be really helpful to have someone who is trained in really good listening skills, who can tolerate the suffering people experience when they get close to the end of life.”

Cleveland, who does not have children, hasn’t worked out exactly how she wants to be remembered yet, but with Johnstone’s help she’s piecing it together. During a recent session she brought up a story she hadn’t told in years — one that took place at a school lunch table, some time in the late 1960s.

“There was this family in the neighborhood and they were poor, and they had nothing to eat but ketchup soup,” she said. “I couldn’t believe it. So I shared some of my lunch with them. It was how we were raised. If someone needed something, that was it. You didn’t say no.”

Many years later, Cleveland became a representative for a produce packing company, regularly visiting Central Valley orchards to take inventory and question the farmers about workers’ living conditions.

“They were living in the worst slums you’ve ever seen,” Cleveland said. “I always got in trouble for asking about that, but I kept asking anyway.”

Johnstone kept scribbling. Cleveland explained how her career was interrupted by a Hodgkin’s lymphoma diagnosis in her 20s, and how she spent years as a caregiver for a sick sister, mother and aunt.

During the next session, the pair will paint a cover for Cleveland’s written story. The title word, they’ve decided, is Survivor.”

“I’m seeing a connection here,” Johnstone said. “I think this is a source of a lot of your resilience.”

Technology has helped spread storytelling as a form of healing. StoryCorps, a nonprofit podcast network, launched its legacy initiative in 2010 to focus on people with serious illnesses. They visit hospitals and clinics throughout the U.S. to train providers on how to capture end-of-life conversations on cell phones. In California, the legacy project partners with Hinds Hospice in Fresno and the Zen Hospice Project at the University of California, San Francisco.

Perri Chinalai, director of community training for StoryCorps, said she believes storytelling helps build a bridge between patients and physicians that can ultimately improve care.

“This is an opportunity for people to talk about themselves outside of their diagnosis,” she said. “It allows for a more holistic understanding of who people are. … It could create a culture of storytelling that enhances the services.”

At Hinds Hospice, storytelling sessions are offered to all visitors, said community outreach liaison Jill McCarthy. Staff can conduct the interview sessions and use the StoryCorps app to archive stories in the Library of Congress’s American Folk Life Center.

Over the years, McCarthy and her staff have heard incredible stories, she said. She remembers an elderly pilot who described one of his first flights over Alaska, as well as an indigenous California man who wanted to record himself speaking in his native Mono language. But mostly, she works with families who just want to get to know a loved one better.

“If the person dies before they get to share their story, those stories go with them,” McCarthy said. “It’s a chance for families to talk about things they’ve never talked about before, to express what they mean to one another. They don’t have to be these grandiose things. It’s the little things that for generations have been handed down.”

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