Category: Quality of Life

Posted on

Meeting Death with Words

By 

Meeting-Death-With-Words
Memoirs rarely tremble with such life as when expressing their author’s death.

A memoir of dying is exceptionally wrenching because we know the end at the beginning, and so meet with an effortful, pulsing person who will soon be neither. Pages rarely tremble with such life as when expressing their author’s death.

End-of-life memoirs have become increasingly prevalent of late. Christopher Hitchens wrote of his demise with customary pugnacity. Oliver Sacks recorded his fading remembrances, as did Tony Judt. Jenny Diski is currently chroniclingthe indignities of her last stretch, while Clive James composes newspaper columns on his future disappearance. Our aging population, granted so many extra years by medical science, anxiously tiptoes toward the dark matter, guided by those articulate enough, unlucky enough, to know what to say.

Often, the memoir starts with a prominent author declaring the diagnosis in a major periodical (Hitchens in Vanity Fair; Sacks in the Times; Diski in The London Review of Books). The diagnosis is usually terminal cancer, whose time frame may lend itself to contemplation, though not to more extensive pursuits. Typically, the author recites the markers of tragedy: foreboding symptoms overlooked, a collapse, the condemning scans, the switch to the wrong side of the window between healthy and ill. Some writers embody Hitchens’s line about “living dyingly,” straining to remain themselves, expressing dark humor and secular defiance, downshifting from existential fears to the banal process of death. Others pore over what they’ve had, been, seen. Touchingly, both Judt and Sacks cite nostalgia for gefilte fish. Food—that first pleasure—can be so important at the end, even when it cannot be swallowed.

Another mode is the lyric goodbye, typified by the poetry of James, particularly “Japanese Maple,” a rare popular hit for contemporary verse when it was published in The New Yorker. Of the maple tree, he wrote:

Come autumn and its leaves will turn to flame.
What I must do
Is live to see that. That will end the game
For me, though life continues all the same.

But a complication followed—among the only pleasant complications available to a terminal patient: James failed to die. Indeed, he continues to write, having survived that maple flaming twice over. In his new column for the Guardian, called “Reports of My Death,” he confesses to a twinge of embarrassment, as if he’d duped everyone with that guff about dropping dead. (A famous case of this desirable awkwardness involved the humorist Art Buchwald, who moved into a Washington hospice, in 2006, expecting to die, only to thrive there, dining on McDonald’s and holding court for months before ultimately moving back out.)head:heart

Other end-of-life writing is hortatory: memoirs with lesser literary aspirations but greater motivational ones, such as “The Last Lecture,” by Randy Pausch, a computer-science professor; the book, a parting address about achieving childhood dreams, was a best-seller. Another example is “Chasing Daylight: How My Forthcoming Death Transformed My Life,” by Eugene O’Kelly, an executive at the accounting firm KPMG who spent his final hundred days eschewing his hard-driving ambition in lieu of moral fulfillment. What most end-of-life memoirists share is a desire to wring the essence from what they’ve been—either to clasp on to it or, finally, to release it. These are works of defiance, sometimes escapism. Above all, they are expressions of the noble delusion: create because nobody endures, and create in order that you endure.

A compelling, crushing addition (and, sadly, a subtraction) is “When Breath Becomes Air,” by Paul Kalanithi, a neurosurgeon of immense promise who died of lung cancer, in March, at the age of thirty-seven, having labored on a memoir that stands as a manifesto for the genre, pressing readers to look at the impending darkness. “The fact of death is unsettling,” he writes. “Yet there is no other way to live.” When Kalanithi saw the CT scans of his chest, he surveyed a map of his own death. Others, including his shattered father, insisted that the young man would beat it. Kalanithi was too talented a diagnostician to concur. But a question pursued him: How long have I got left? This prompted a much shared Times Op-Ed that became the seed of his book.

In past centuries, those who were dying might have known that the end neared, but nobody had the tools to estimate when. Today, we have Kaplan-Meier survival curves, and yet doctors grow coy when pressed for a number. Keep up your hope! Kalanithi himself had dodged the subject with patients. When he becomes one himself, he aches to know. His oncologist refuses even to discuss it.

But it is time itself that conditions our behavior, even our identity. When we consider ancient populations whose life expectancy was less than forty years, we picture wretches, limited in scope, and fundamentally different from us as a result. Presumably, our descendants will view us in the same way, as being cursed with the appallingly brief span of eighty-something. For now, that is our anchoring point, an acceptable innings, with seventy too soon, sixty unfairly so, and so on. It’s a pact that the secular make with nothingness: we’ll accept just this life, but give us our share! While healthy, Kalanithi had divvied up his remaining years: twenty as a surgeon and scientist, followed by twenty as an author. Abruptly, he had to recalculate. If ten years remained, he’d devote himself to science. If two, he’d write. Which was it to be?

Raised in suburban New York, then in a small town in Arizona, Kalanithi was a bright son of southern-Indian immigrants, his father a cardiologist, his mother a trained physiologist, although she is recalled in his book more as her son’s minister for education. Her academic urging propelled him toward English literature at Stanford, which he studied along with human biology. At the graduate level, however, literary studies frustrated him, touching on the stuff of life, but with wool rather than with steel. The scalpel called. Soon, he was dissecting cadavers at Yale Medical School, where, he remembers, a surgeon drifted in to explain various scars on a corpse, his elbows leaning on the dead man’s face. Kalanithi returned to Stanford for his neurosurgical residency, and he excelled. He stood at the brink of a glittering career. But there was the weight loss, the back pain, the suspicions batted away. Chances are it’s just …

When the elderly face death, they dread losing what they’ve had. When the young face death, they dread losing what they haven’t had. Which is worse? Kalanithi’s wife worries that, if they conceive a child, it could render his farewell more excruciating. But life, he argues, is not about avoiding suffering.

Meds stabilize his disease for a spell. He soldiers through the completion of his residency. On a subsequent scan, a large new tumor appears. “I was neither angry nor scared. It simply was. It was a fact about the world, like the distance from the sun to the earth.” He conducts his last case as a doctor, his final walk from surgery, witnessing the dissolution of an identity so arduously attained. Kalanithi attended the birth of his newborn daughter, and grew deeply attached to her. “I hope I’ll live long enough that she has some memory of me.” Cady was eight months old when Kalanithi died. “Words,” he writes, “have a longevity I do not.”

The literary world has been circling the subject of death for at least a decade, notably via acclaimed accounts of bereavement such as Joan Didion’s “The Year of Magical Thinking” and “Blue Nights”; Kay Redfield Jamison’s “Nothing Was the Same”; and Joyce Carol Oates’s “A Widow’s Story.” Academic thinkers are joining in, too; among the volumes appearing this past year are “The Worm at the Core: On the Role of Death in Life,” by the psychology professors Sheldon Solomon, Jeff Greenberg, and Tom Pyszczynski; “The Work of the Dead: A Cultural History of Mortal Remains,” by Thomas W. Laqueur, a historian; and “The Black Mirror: Looking at Life Through Death,” by Raymond Tallis, a former professor of geriatrics.

All this attention comes not from a greater understanding of mortality but from a greater ignorance of it. The promises of religion are replaced by the promise of science, yet medicine fails to vanquish its ultimate foe, instead rendering death more obscure, a matter for procrastination. The preëminent thanatophobe of our day, the novelist Julian Barnes, wrote a two-hundred-and-fifty-page memoir on his fear of nonexistence, “Nothing to Be Frightened Of.” The title isn’t intended to be soothing: by “nothing” he means “nothingness.” He writes, “If death ceased to be talked about when it first really began to be feared, and then more so when we started to live longer, it has also gone off the agenda because it has ceased to be there, with us, in the house.”

In richer parts of the world, death is likely to arrive in a nursing home, or in a hospital—precisely where we most dread spending our dwindling hours. The exit from life, as Atul Gawande observes in his treatise “Being Mortal,” has become overly medicalized in recent decades, causing us to forget centuries of wisdom. We have ended up with a system that treats the body while neglecting its occupant. But the discontent is mounting, Gawande says: “We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase.”

How much should each of us be pondering death? Some people flee the topic. (Few of them, I suspect, have read this far.) Others brood over it. As a matter of preparation, the death-minded aren’t necessarily better off, since they are so unlikely to predict their manner of departure. (How many flight-phobics will fall to earth clutching their chests?) Nor does one know the person to whom one’s own death will occur, given how the violence of disease changes a patient.

But death contemplation is more than prep work. It’s a world view, with nothingness conferring meaning on what precedes, just as a novel gains meaning from its conclusion and would lose sense were it to patter on interminably. Writers—perhaps from a vocational need for endings—seem especially attuned to the looming conclusion of themselves. Or maybe it’s the other way around: those gripped by thoughts of death are prone to artistic pursuits, in the hope that something of themselves will remain.

When medieval painters incorporated memento mori into their compositions—the skull dabbed into a portrait of courtly gents, say—they were proclaiming, “Beware earthly delights, for hell is everlasting!” In our times, the skull has become a fashion accessory or an attempt at irony in dreary artworks. The contemporary emblem of death is the bucket list, inverting the memento mori into “Partake of earthly delights, for life won’t be everlasting!”

The problem is not a lack of spirituality, though. The problem is how to partake of earthly delights. Should one engage in pleasures at the end? Should one strive for lasting accomplishment? The answer depends on what haunted Kalanithi: How long have I got? The answer is so hard to find, harder still to admit. Paradoxically, time is precisely where our society errs in handling death, having licensed our doctors to extend existence, irrespective of the character of the additional weeks. Unfortunately, dying is something we are figuring out only through doing. And now perhaps through the telling, too.

Complete Article HERE!

Posted on

Dying docs opt for less aggressive end-of-life care

By Sabriya Rice

Doctors facing death may be less likely to seek surgery or visit the intensive-care unit during the last six months of their lives when compared to non-clinicians. They are also less likely to ultimately die in a hospital, according to studies posted Tuesday in JAMA that looked at use of end-of-life services.

when doctors grieve

“Actual experience with hospital deaths may differentially motivate physicians to avoid them,” the authors of one report wrote. Physicians may also opt for less rigorous care, because of their “knowledge of its burdens and futility,” the researchers added.

Policy surrounding end-of-life care has been highly politicized in recent years. Physicians have argued for Medicare to support conversations about the pros and cons of end-of-life treatments. Opponents on the other hand feared this could result in so-called “death panels,” and care decisions based on financial concerns.

Last fall, the CMS moved forward with plans to create distinct Medicare billing codes and rates for end-of-life care planning. The policy was welcomed by physicians, who said it would allow them more opportunity to have conversations about end of life as part of yearly checkups.

While medical advancements have helped people to live longer, they have also led to increased demand for end-of-life care and associated costs. By 2050, the population of people age 65 and over is projected to be 83.7 million, almost double that of 2012, in part due to aging baby boomers. The population of people living to be age 80 and older is projected to reach 30.9 million, according to the U.S. Census Bureau (PDF).

Also, hospice usage among Medicare fee-for-service patients has been growing. Rates nearly doubled from 26% in 2002 to 47% in 2012, according to a 2015 report from the Medicare Payment Advisory Commission (PDF). Spending on hospice care also rose from just under $1 billion to $3.4 billion during that time period.

The Jan. 19 issue of JAMA delves into a number of studies, commentary and viewpoints on death and dying in this current environment. In one commentary, surgeon Dr. Atul Gawande of Boston’s Brigham and Women’s Hospital calls the picture of care at the end of life “disturbing.” Holding palliative care consultation and end-of-life discussions as a last resort is “incorrect and harmful,” he wrote.

End-of-life care must consider both how much treatment is needed and balance that with the quality of life it provides to the patient. Given their knowledge of healthcare, two studies specifically aimed to examine the intensity of treatments chosen by doctors nearing death, compared with members of the general population.

One analysis looks at records of Medicare beneficiaries age 66 and older who died between 2004 and 2011 in Massachusetts, Michigan, Utah and Vermont. Death records were used to obtain education and occupation status so researchers could differentiate physicians’ end-of-life choices from those of the general population.

The study found that in the last six months of life, on average about 25% of a total 2,376 physicians who died had surgery and 26% were admitted to the ICU. That’s compared with just over 27% of the general population (159,255) of patients. On average, 32% of the general population died in a hospital; less than 28% of physicians did. The study was conducted by researchers from Brigham and Women’s Hospital; the Mayo Clinic in Rochester, Minn.; and Weill Cornell Medicine, New York.

The other analysis used U.S. Census Bureau mortality survey data and the National Death Index to look at individuals between ages 30 and 98 who died between 1979 and 2011. Physicians and health professionals such as dentists, nurses and pharmacists were less likely to die in a hospital compared with the general population.

The authors of that report were from the New York University School of Medicine, the U.S. Census Bureau and the National Cancer Institute.

Both studies say familiarity with healthcare and greater financial resources may be associated with lower likelihood of aggressive end-of-life care. Elderly clinicians may have the financial means to pay for other options, such as palliative care or having a skilled nurse at home, the authors say.

Complete Article HERE!

Posted on

Rural Aging: Shaken by her husband’s death, Jane Faller vows to stay on their remote land

By Erica Curless

Jane Faller is embraced by her longtime friend
Jane Faller is embraced by her longtime friend Deb Anthes after she changed Faller’s arm bandage on Oct. 1 in Republic, Wash. Injured in a fall, Faller’s arm required daily care from Deb, who would visit her as Jane’s husband, Bob Faller, lay in hospice care.

Bob Faller died after a day of fighting and struggling. Naked and fierce, gripped by death’s delirium, he rolled on the floor tearing paper into tiny shreds. He tried to flush his pants down the toilet.

Jane, his wife of 58 years, was alone in their rural Republic house, terrified. Helpless.

When a new day dawned, she called a hospice nurse, who told Jane to increase her husband’s morphine dose to every two hours. Bob eventually settled, slept, and slowly let his body shut down.

Longtime friend Steve Anthes was with Jane as Bob, 79, took his final breath. It was Oct. 19, nearly 18 months after Bob was diagnosed with throat cancer, 18 months of dying slowly in the forests far away from hospitals, tubes and machines. It was the ending he chose.

Now a new struggle begins for Jane. Can this 77-year-old woman live alone in the winter in remote Ferry County with little money and medical bills arriving daily?

A nondescript box containing the ashes of Bob Faller sits atop a hutch he built by hand in his earlier years. “There’s pieces of furniture he built all over the country,” Jane said.
A nondescript box containing the ashes of Bob Faller sits atop a hutch he built by hand in his earlier years. “There’s pieces of furniture he built all over the country,” Jane said.

Relief brings feelings of guilt

“It’s quiet now,” Jane said shortly after her husband’s death. Her voice was strong but soft over the phone, the relief evident.

Yet within an hour, her house filled with people and the chaos of dying’s aftermath. The coroner, friends bearing containers of food, phone calls, decisions.

By 9 p.m., Jane sat in near-darkness on her couch, alone. Murphy the dog slept on the floor near her feet. Bob’s hospital bed was around the corner, empty.

“I feel guilty at feeling so relieved,” she said. “I’m really going to sleep tonight.”

Three months later, Bob’s ashes are in a gray plastic box on a beautiful wooden shelf that he crafted with his own hands years ago. Jane carefully removed the lid, exposing a plastic bag of ash. She put her nose near the bag and took a big sniff. She shrugged. At first she talked to him a lot, lit candles. Not so much now.

Jane’s unsure what she will do with the ashes, other than eventually spread them somewhere in nature. It doesn’t matter right now as snow falls outside the window and each day presents more pressing problems and challenges.

Two weeks ago the weather warmed and snow slid from the roof, burying the deck so she couldn’t open the door. She called for help.

A few weeks before that, the ancient hot water heater leaked at least 25 gallons onto the floor and into the crawl space under the house. She called the local hardware store for the name of a plumber, who inspected the damage and asked for a $400 check to buy a new heater and supplies. The man was gone several hours, long into the evening; Jane panicked. At one point she held her cramping stomach, wrought with stress. But he eventually returned and by 9:30 p.m. had the tank installed and working. She paid another $125 in labor costs and then had to buy a new faucet for the sink. Her hand shook as she wrote the check.

After visiting her daughter in Issaquah, Washington, for Thanksgiving, she returned home and turned on the kitchen light. It crashed from the ceiling.

Jane Faller dons a coat in her mudroom containing canned goods on Wednesday. Everywhere she looks, she sees reminders of her late husband. Jane and Bob canned the goods last summer and they remain stored on a shelf he built for them next to a collection of his favorite hats.
Jane Faller dons a coat in her mudroom containing canned goods on Wednesday. Everywhere she looks, she sees reminders of her late husband. Jane and Bob canned the goods last summer and they remain stored on a shelf he built for them next to a collection of his favorite hats.

Cumulative stress taking its toll

Jane knew living alone would be challenging, but she wasn’t prepared for the reality of it.

A year of stresses have snowballed: Bob’s illness and mental highs and lows. The nasty fall while walking her dog that turned into a three-hour ambulance ride and a weeklong stay in a Spokane hospital. The missed time with her dying husband because of her hospitalization. The nearby forests that erupted in wildfires this summer, the same week Bob started hospice care, forcing them to prepare to evacuate.

Now there’s snow and ice and long, dreary days. After spending months with her arm immobilized in a brace and then in physical therapy, Jane’s arm and hand still hurt. The scars are purple and angry. Her fingers ache.

Jane is timid about walking, although she used to hike miles a day in all weather. She hasn’t resumed her yoga practice. Her legs and feet are achy.

“She’s keeping a good face on it,” said Cherie Gorton of Rural Resources, who checks on Jane at least weekly and recently sat with Jane as she opened piles of medical bills. “I think it’s to the point where she probably needs to get out more. Accept invitations. But I know that is really hard to do.”

Gorton called Jane’s daughter in Issaquah, Cat Kelley, to see if she could help her mother make sense of the mounting medical bills from the hospital stay and ambulance ride. Jane has Medicare, but that only covers a percentage of the bills. She has a few too many dollars in her savings account to qualify for Medicaid. Jane and Bob took out a reverse mortgage that covers their mortgage payment, and she receives Social Security. Her son in North Carolina recently created a GoFundMe account to ask people for donations.

The financial woes weigh heavy on Jane. She doesn’t like owing people. Her kids want her to wait for all the bills to arrive so she knows how much she owes. Then they will figure out a plan.

“It makes me really upset,” Jane said, after a recent trip to the mailbox, which most always contains a bill. “It’s horrible.”

On Oct. 20, the day following Bob’s death, daughter Cat Kelley holds Jane’s healing arm as the two go for a walk on the Fallers’ Republic, Wash., property.
On Oct. 20, the day following Bob’s death, daughter Cat Kelley holds Jane’s healing arm as the two go for a walk on the Fallers’ Republic, Wash., property.

Once estranged, the kids have visited their mom

Jane and Bob chose an adventurous, nomadic life at the cost of not having more than a few thousand dollars in savings. They never thought about getting old, getting sick or having medical expenses.

Yet Jane doesn’t regret their independent lifestyle and her husband’s dreamy, back-to-the-land mentality.

Kelley, Jane’s daughter, said her mom recently told her that’s she’s trying to remember only the good things about her life with Bob.

“That will be stuck in my mind forever,” Kelley said. “I like it.”

The Fallers’ romance with nature, however, hasn’t been embraced by their four living children.

“That’s how she wants to live,” Kelley said recently. “She has something in her that thrives on that.”

All the children have rebelled against their parents’ hippie lifestyle. In subtle ways, they have all alluded to the fact that having Bob as their father wasn’t easy. He was gruff, demanding.

Today all the Faller children are financially conservative, have stable, traditional jobs and live in large houses in the suburbs. They drive nice cars and buy material things.

Kelley, an attorney who no longer practices, proudly has three bathrooms in a big house. It has a generator so she is never without electricity. She said she will never again live like a squatter, as she believes the family did when they homesteaded in Canada and lived in a shack without running water or a toilet and where her mom cooked over an open fire.

The result was something of an estrangement between the children and Bob, and by association, Jane.

Since Bob’s death, three of the children have reconnected, however, jointly visiting their mom in November to help her prepare for winter and sort through Bob’s possessions. Kelley said it’s relieved a lot of family tension.

Before Bob died, one of his grandsons, Bobby, came for a rare visit, to say goodbye and make peace. Afterward, Bob would talk about the visit until his voice gave out. He reiterated the importance of family, even when people don’t agree and view the world differently. Afterward, Bob felt energized, somehow released from his burdens. Perhaps it was that connection he needed, proof that the Faller tenacity lives on.

With that same tenacity, Jane is reaching deep into her adventurous soul and said she intends to stay put on her beloved land. She looks through seed catalogs by the wood stove. Friends are plenty, checking on her, plowing the driveway, helping in any way she needs. This is home.

“I’m staying as long as I can,” she said with her girlish giggle. “We’ll see what happens.”

Jane Faller eats dinner by herself as snow settles outside her home in Republic, Wash., on Tuesday. Her children worry about her making it through the winter, but her friends Steve and Deb Anthes regularly check in on her, and a neighbor plows her driveway. Still, the solitude can be unrelenting. “It’s an empty home,” she said.
Jane Faller eats dinner by herself as snow settles outside her home in Republic, Wash., on Tuesday. Her children worry about her making it through the winter, but her friends Steve and Deb Anthes regularly check in on her, and a neighbor plows her driveway. Still, the solitude can be unrelenting. “It’s an empty home,” she said.

Complete Article HERE!

Posted on

New website will give people ‘greater control over their death’

By JAMIE BULLEN

Greater control: Compassion in Dying said too few people are planning for how they want to be treated at the end of their lives
Greater control: Compassion in Dying said too few people are planning for how they want to be treated at the end of their lives

A website which allows people to declare how they wish to be treated in the final weeks of their lives is set to launch this week.

Compassion in Dying, a charity that supports people to exercise their rights over end-of-life treatment, said MyDecisions.org.uk will give people greater control over their death.

The group said the website was created in response to fears not enough people were planning for how they want to be treated in the advanced stages of their life.

A statement on the MyDecisions.org.uk homepage reads: “You might not like to think about it but there might come a time when you’re too unwell to tell those caring for you – like your family or a doctor – what you do and don’t want to happen.”

Anyone visiting the site can fill out an “advance decision” where users can refuse any drugs or medical treatments that may be given to them at some time in the future.

The document, also known as a living will, is legally binding meaning any healthcare professional that ignores it risks going to court.

The website also allows people to make an “advance statement” to declare preferences, wishes and beliefs for those who might have to make choices for them should they lose the capacity to make their own decisions.

According to research commissioned by the charity, only 4 per cent of Britons made a record of their preferences last year.

The website is set to go live on Thursday.

Complete Article HERE!

Posted on

How Uganda Came To Earn High Marks For Quality Of Death

By Rae Ellen Bichell

african-palliative-care-association
A elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda.

Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.

“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.Dr. Anne Merriman

Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.

Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management – before Germany did. And Hospice Africa Uganda made liquid morphine.

“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”

So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.

An HIV-positive woman
An HIV-positive woman, living alone in a one-room house, speaks with a visiting doctor.

Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.

Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”

Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.

Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.

Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.

Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”

For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.

“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”

Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”

In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.

“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.

Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.

Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.

“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.

A palliative care physician
A palliative care physician visits an HIV-positive patient who lost her family to the AIDS epidemic. She’s resting on a mat outside her home.

Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.

Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.

Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.

“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.

Complete Article HERE!

Posted on

When are you officially dead? Well, that may depend on which hospital is making the call

By Sarah Kaplan

001

The narrow, inscrutable zone between undeniably still here and unequivocally gone includes a range of states that look like life but may not be: a beating heart, a functioning digestive system, even moving fingers and toes. Death is less a moment then a process, a gradual drift out of existence as essential functions switch off, be it rapidly or one by one.

It was exactly midnight when Colleen Burns was wheeled into the operating room at St. Joseph’s Hospital Health Center in Syracuse, N.Y. She had been deep in a coma for several days after overdosing on a toxic cocktail of drugs. Scans of electrical activity in her brain were poor, and oxygen didn’t seem to be flowing. Burns was brain dead, her family was told; if they wanted to donate her organs, now was the time to do it.

But there, under the bright lights of the prep room in the OR, Burns opened her eyes. The 41-year-old wasn’t brain dead. She wasn’t even unconscious anymore. And doctors had been minutes away from cutting into her to remove her organs.

This is the nightmare scenario, the one that sends doctors and neurologists into cold sweats. It’s the reason that, in 2010, the American Academy of Neurology issued new guidelines for hospitals for determining brain death – the condition that legally demarcates life from whatever lies beyond. Those standards, according to Yale University neurologist David Greer, who worked on them, are meant to ensure that no patient is declared dead unless they really are beyond all hope of recovery.

“This is truly one of those matters of life and death, and we want to make sure this is done right every single time,” he told NPR.

But five years later, according to a study led by Greer that was published in the journal JAMA Neurology Monday, not all hospitals have adopted the guidelines.

Of the nearly 500 hospitals Greer and his colleagues surveyed over a three year period, most facilities did not require that someone with expertise in neurology or neurosurgery be present to determine brain death. At more than half of hospitals, the person who makes the call doesn’t even have to be the patient’s attending physician. A majority also didn’t require doctors to test for hypotension (abnormally low blood pressure) or hypothermia, both of which can suppress brain function which could mimic the appearance of brain death.

There were large improvements in standardization of brain death assessments across hospitals since the 2010 criteria were published. The survey also looked at standards, not practices.

But the lingering lapses are still worrying, Greer told NPR.

“There are very few things in medicine that should be black and white, but this is certainly one of them,” he said. “There really are no excuses at this point for hospitals not to be able to do this 100 percent of the time.”

Burns’s near-disastrous declaration of death happened in 2009, before the new guidelines were released, though a U.S. Department of Health and Human Services report on the incident found that St. Joseph’s had failed to meet previous standards for assessing death. Hospital staff missed several signs that Burns’s brain was still functioning the night she was due for organ donation surgery: her nostrils flared, her lips and tongue moved, she was breathing “above the ventilator” (meaning, taking breaths of her own accord). And when a nurse performed a reflex test, scraping a finger along the bottom of Burns’s foot, the woman’s toes curled inward, according to the Syracuse Post-Standard.

Doctors failed to order repeat CT scans and inexplicably and inaccurately said that she suffered from cardiac arrest when she hadn’t. Crucially, they also failed to measure whether the drugs she had taken still lingered in her system, preventing her from exhibiting even the most primitive reflexes expected of someone with brain activity.

This is a widespread problem, Greer’s report indicates: only about 32 percent of hospitals surveyed required drug tests to rule out toxic levels that can mimic the loss of primitive reflexes associated with brain death.

As soon as Burns opened her eyes, she was rushed back into the ICU and her doctors resumed treatment. She ultimately recovered from her overdose and was discharged two weeks later. But 16 months after the near-miss in the OR Burns committed suicide, her mother told the Post-Standard.

Burns’s mother, Lucille Kuss, said that depression, not what happened at the hospital, is what drove Burns to her death.

“She was so depressed that it really didn’t make any difference to her,” Kuss said of the incident.

Cases like Burns’s are increasingly rare, but they are emblematic of an anxiety at the root of all discussions about brain death. If death is a process, at what point in the process is the person no longer alive?

For most of history, this question was mostly moot. In the Victorian era, for example, doctors couldn’t keep blood pumping through a permanently unresponsive person’s body, even if they wanted to, and a person who lost brain function would surely quit breathing shortly after. Determining the exact point of death was less a medical necessity than a philosophical diversion: In the early 1900s, Boston doctor Duncan MacDougall recruited a number of terminally ill patients to lie down on a massive scale during their final moments. By measuring fluctuations in their weight at the moment they died, MacDougall claimed, he could determine the mass of the soul.

The advent of organ donation procedures in the 1960s changed that. That period of collapse as functions failed became not only a tragic inevitability, but a vital window when organs could be taken from a dead body and used to keep another alive. Yet defining that window is medically and ethically complicated. Open it too early, as Burns’s doctors almost did, and you risk sacrificing a patient who might have survived. Too late, and the organs will deteriorate along with the life they once sustained.

This is how we arrived at a definition of death as brain death, the complete and irreversible loss of brain function, including in the brain stem (which controls the heart and lungs). It comes largely from a 1968 definition written for the The Journal of the American Medical Association by an ad hoc Harvard Medical School committee, and then affirmed by a blue ribbon medical commission just over a decade later. A person can also be declared dead if they suffer an irreversible cessation of respiratory and circulatory functions – in other words, their heart and lungs permanently stop.

Some critics of brain death as a barometer for organ donation worry that it might encourage doctors to give up on their patients too soon.

Of course, the extraction of organs from a failing body is not the only reason to come up with a legal definition of death. It also helps hospitals to determine when and how to end life-saving interventions and remove a patient from life support.

The logic behind marking brain death as the end of life is that existence without a brain isn’t living.

“The brain is the person, the evolved person, not the machine person,” Cornell University neurologist Fred Plum said at a symposium on comas and death in 2000, according to the New Yorker. “. . . We are not one living cell. We are the evolution of a very large group of systems into the awareness of self and the environment.”

The brain is the person, the evolved person, not the machine person

But not everyone agrees. Cultural and legal definitions of life and death vary – in an interview with NPR, Georgetown University medical ethics professor Robert Veatch called defining death “the abortion question at the other end of life.”

Right now, the family of Jahi McMath, a California teenager who was declared brain dead two years ago but has been kept on life support, is suing to have her death certificate invalidated according to the Associated Press. The McMaths are devout Christians, their lawyer wrote in a brief, who believe that “as long as the heart is beating, Jahi is alive.”

McMath is currently on a ventilator in New Jersey, where state law allows hospitals to take a family’s religion into consideration when making decisions about end-of-life procedures.

Yet despite the legal, medical and moral complexities in determining brain death, there is no federally mandated procedure for doing so, according to the New York Times. There are only the guidelines issued by neurologists, and how hospitals choose to apply them.

That they do so inconsistently only exacerbates the anxieties people have about death and organ donation, Leslie Whetstine, a bioethicist at Walsh University in Ohio, told NPR.

“If one hospital is using a testing method that’s different from another hospital,” she said, “people might wonder: ‘Are they really dead?’”

Complete Article HERE!

Posted on

Palliative and End of Life Care

By Ellen Fink-Samnick

Palliative and End of Life Care

We all know the cost of care at the end of life (EOL) tends to be needlessly wasteful. And we know that, too often, the wishes of patients are ignored, or worse, unknown. As the healthcare system adopts a patient-centered approach, it is important we ask every dying patient and their family what they want. When we do, we find that most would say they want less care and more quality of life in their final days. This is especially pressing today for three reasons

1. There is heightened emphasis on palliative and EOL care, in part, because of Institute of Medicine’s report last year, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life1. In it, experts on death and dying made bold recommendations about how hospitals and healthcare professionals should address palliative and EOL care.

2. Officials from the federal Centers for Medicare & Medicaid Services, Baltimore, said, in July, it would pay physicians to conduct EOL counseling and start a pilot project to pay for hospice care and treatment instead of one or the other. At the end of the four-year project, CMS will evaluate whether it’s better to continue the current form of reimbursement or pay for both.

In this new program, 150,000 dying patients on Medicare will be allowed to choose hospice care to manage pain and suffering, get EOL counseling and medical treatments – including hospitalization – to help them battle illnesses, according to The New York Times2. Research shows that patients, who get palliative care and traditional medical care, have better quality of life and less intense medical care, resulting in lower costs, the newspaper reported.

It’s likely that CMS officials know that providing appropriate care for dying Medicare patients could control some of the steep EOL costs when the healthcare system does what it normally does: provide heroic measures to keep patients alive whether they want or need that.

In a study published in Health Affairs3, researchers at the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai, New York, showed considerable savings when patients with terminal illness are enrolled early in palliative and EOL care programs.

If 1,000 Medicare beneficiaries are enrolled in hospice within 15 to 30 days before death, CMS could save more than $6.4 million and those patients would be spared 4,100 hospital days. If 1,000 dying Medicare patients enrolled in hospice within 53 to 105 days before death, the savings would be more than $2.5 million, adds the study.

3. Brittany Maynard put the importance of end of life care into the news last year. The 29-year-old newly married teacher and resident of California became interested in assisted suicide after her diagnosis with terminal brain cancer in 2013. Under California law, this option wasn’t available. So, she and her husband rented a home in Oregon, which allows assisted suicide. A year later, at least 13 states are pursuing what is called “death with dignity” legislation. Oregon, only Montana, New Mexico, Vermont, and Washington State currently have such laws.

Given these significant developments, it may be more important than ever for healthcare professionals to ask what patients want in terms of palliative and EOL care. When we fail to ask, we are, by definition, no longer providing patient-centered care. Instead, we’re doing what the healthcare system has always done: provide lots of care whether it meets patient needs or not and wasting precious resources in the process.

Fixing this problem shouldn’t be that difficult. We simply need to make sure we’re delivering patient-centered care. To do that, we need to ensure the patient and family are fully engaged in care delivery. But, as we have seen in the past, members of the care team may not be prepared to talk about death and dying. After all, most went to school to learn to care for the living and keep them alive.

Has the care team talked with the patient about what he or she wants? If there was such a conversation, was the family included? Did the care team discuss what the patient wants without the patient being present?

The patient-engagement step is easy to overlook. Healthcare providers, not trained to talk about death and dying, don’t know how to do it; or believe it’s someone else’s job. So, the first step is to ensure that someone lets the hospital or health system know what the patient wants. In many facilities, this falls to the case manager or social worker who ensures the patient gets what he or she needs from the health system.

James McGregor, MD, an expert in palliative and end of life care and senior medical director for Sutter Health, Sacramento, Calif., says, “Addressing the full spectrum of psychosocial, emotional, physical and spiritual needs helps to raise patient and family satisfaction and prolong life. Patients and family members often have questions about palliative and EOL care and need someone to answer them.”

Those who work in palliative and EOL know the value of engaging patients and their families to guide them through these difficult times, explaining an illness and planning. And, they are likely to create a more sustainable healthcare system.

Complete Article HERE!