Exit strategy: ‘They want a promise from their doctor, that when they don’t want to live, they can stop living’

by Sharon Kirkey

The last of a three-part series examines living while dying: Exit strategies.

On a warm summer day in 2011, Alain Berard learned he would die from a disease that will eventually take away his ability to move, swallow or breathe on his own, before it kills him.

It took 11 months for doctors to understand what was going wrong inside his body. Once an avid runner, Alain began experiencing cramping and fatigue in his legs. He thought he was over-training.Alain Berard

Then he started having trouble swallowing.

His heart, blood and thyroid gland were checked before a specialist saw the tremors and quivering at the back of his tongue.

A lumbar puncture and brain scans were ordered, to rule out multiple sclerosis and other neurological disorders, and as each test came back negative, Mr. Berard’s panic grew. He remembered the pictures on TV only months earlier of former Montreal Alouettes star Tony Proudfoot, who died of amyotrophic lateral sclerosis, or ALS — Lou Gehrig’s disease, an illness that normally ends in death within two to five years.

“I would have taken any other diagnosis before ALS,” Mr. Berard, now 48, says.

Angela GengeALS is one of the most devastating diseases known to man, an incurable illness that attacks the nerve cells in the brain. But ALS is also a disease apart, because it allows patients to create what neurologist Dr. Angela Genge calls an “exit strategy” — and we can all learn from them how to better prepare for our own deaths.

“We tend to live our lives as if life is infinite,” says Dr. Genge, Mr. Berard’s doctor and a director of the ALS clinic at the Montreal Neurological Institute and Hospital.

“These patients go from that mindset to, ‘I’m dying, and I’m going to die a death in which I become disabled.’ This disease becomes extremely scary.”

But then two things change: most people recover from the diagnosis, psychologically, Dr. Genge says. “They know what is going to happen to them, and then each signpost along the way is another step, another conversation,” she said. What is it you need to do before you die? How much do you want us to do to keep you alive?Alain-Berard-family

“It is very common that they want a promise from their doctor, that when they don’t want to live, they can stop living. They can die. They want control over what will happen.”

Mr. Berard is now three-and-a-half years into his dreaded diagnosis. He looks incongruous, sitting in his wheelchair. The pieces don’t fit: He is six feet, three inches tall, with broad shoulders and chest. Yet he is speaking frankly about whether he would ever accept a feeding tube in his stomach, or a tracheotomy — a surgical incision in his windpipe so that a ventilator could pump air into his lungs.

His wife, Dominique, a schoolteacher, has been taught the Heimlich maneuver and what to do if Mr. Berard suddenly starts choking. She is petite, but strong. She is preparing for the day she will have to take over complete care of her husband, “because I will be like a child, like a baby,” Mr. Berard says.

Alain-Berard-familyHe doesn’t know yet how much he would be prepared to endure, or, if his condition worsens after Quebec’s “medical aid in dying” law takes effect, whether he would consider asking his doctor to help end his life

“It’s always a debate. What would I want for myself, and for my family?”

As the Supreme Court of Canada weighs lifting the federal prohibition on assisted suicide, in Quebec, the hypothetical will soon become real.

The Quebec law is expected to go into effect at the end of this year. A special commission established to set the ground rules for assisted death will begin work next month.

Some believe assisted suicide is already occurring in far less desperate ways — with the help of doctors.

In 1994, witnesses testifying at a special Senate committee on euthanasia said physician-hastened deaths are happening clandestinely, and that the law, as it now stands, is not being enforced.Alain-Berard-family

“I have spoken with physicians who have been involved directly in the process. I know for a fact that it does occur on a regular basis,” Dr. Michael Wyman, a past president of the Ontario Medical Association said.

Dr. Jeff Blackmer, the Canadian Medical Association’s director of ethics, acknowledged there are anecdotal reports doctor-assisted deaths are occurring in Canada.

“But I think it’s important to note that I have never had a doctor tell me, either in person or online or otherwise, that they have participated in this type of activity. Never once,” Dr. Blackmer said.

Last summer at the Canadian Medical Association’s annual general council meeting in Ottawa, some doctors said dying farm animals are treated more humanely than patients, and that there are times when the most compassionate thing to do is to stop a heart beating.

People with ALS fear two things: dying by choking, or dying by suffocation. Dr. Genge tells her patients: These are not untreatable problems you have to suffer through. “We can manage every one of those symptoms so there is no suffering,” she said.

“The disease itself put you in a certain state. But the only way you die from ALS itself is by respiratory failure, and if you remove that piece by going on a ventilator, then you literally continue until other organs, like the heart, fail,” Dr. Genge said. One patient who died last year had been on a ventilator, at home, for 17 years.

Without ventilation, the prognosis is two to five years.

Alain-BerardMr. Berard understands his disease is following an arc. “I’m pretty close to the edge, where it’s going to fall off. But I do my best not to overexert myself.”

He and Dominique have installed a lift on the ceiling above his bed in a specially renovated room. He has chosen where he will be cremated and buried. “I can go and see where I’m going to be.” He is preparing a Power Point presentation for his funeral — photos of himself with his girls, Noemie, 20, and Charlotte, 17, and videos of his impersonations of Quebec politicians.

“I’m in a wheelchair. This I can cope with,” says Mr. Berard. “But there will be a time that it will be too difficult for me and my family to see me in this condition.”

He supports Quebec’s law that could give people like him a more gentle death, should they choose it.

“I consider it as an option, like a feeding tube, or a tracheostomy. It’s like a treatment for the end of life, when the illness is too difficult to cope with,” he says.

“When you say, you know what? I’ve had enough. I don’t want to do this anymore.”
Complete Article HERE!

Live well until dying: Push on to provide palliative care sooner during end-of-life care

by Sharon Kirkey

This second of a three-part series examines living while dying: How to improve the quality of life until the last breath. First part HERE.

Gerald “Jerry” Dill lay face down and semi-conscious on the operating table as the doctors drilled into his spine.

When cancer spreads to the vertebra, the bones become fragile and can collapse. Nerve roots coming out of the spine get pinched, causing serious pain. For Mr. Dill, the pain came in sudden and furious bursts. Pain that would hit “like a linebacker,” the 67-year-old says. Pain that shouted, “Here I am!”

In December, surgeons drilled into his crumbling vertebrae. Next they inserted a small balloon, re-expanded it and then injected bone cement into the bone, to keep it from collapsing again.

The relief, he says, was almost instantaneous. “I literally got up from the table and walked.”

In 2012, Mr. Dill began experiencing tightness in his chest. He thought he was having a heart attack. The diagnosis was terrifying and grim: stage four prostate cancer that had already spread to the bones.


Mr. Dill started a new round of chemotherapy Monday. He is also receiving palliative care, including pain control and psychosocial and spiritual support to deal with “my psychological and mental attitude towards things.”

“I’m dealing with it well, I’m a fighter,” he says. “But I’m learning not to get too far ahead of myself.” He worries about his teenage daughters, “my joy.”

“My kids are very well aware that this is a life-threatening disease and they spend time with me, they talk with me,” he says.

“They know that I can be out of here at any time,” says Mr. Dill, a man of strong faith. “I’m at God’s calling right now.”

For years, the philosophy was that patients with terminal illnesses received “active” treatment up until the very end, and only then were they offered palliation, or “comfort” care, in the final hours or days of life.

The push now is to provide palliative care sooner and include it with usual medical care.

The goal is to live well until dying, not hasten or postpone death.

More than 250,000 Canadians will die this year. The vast majority will not receive access to high-quality palliative care in their home, hospital, or long-term care facility, because end-of-life care is being virtually ignored in discussions around health reform, even with a rapidly growing aging population.

Watching a loved one die a bad death “turns the promise of a peaceful exit from this life into a lie,” Harvey Max Chochinov, director of the Manitoba Palliative Care Research Unit at CancerCare Manitoba, wrote in a recent commentary in HealthCarePapers.

“For all too many Canadians, that is the lingering memory they carry of their loved one’s death.”

Groups such as the College of Family Physicians Canada say that, as a matter of social justice, all Canadians should have access to quality, end-of-life care.

Demand for residential hospices, most of which rely heavily on charitable donations, is so great people are dying on gurneys in emergency rooms.

Exhausted and emotionally drained caregivers often struggle to get the support they need to care for loved ones at home. Dying patients are languishing on hospital wards, simply because there is nowhere else to send them.

“In Canada right now if you’re at the end of your life and you haven’t been referred to a hospital-based palliative care program or a residential hospice, you are going to end up in hospital. It’s inevitable,” says Sharon Baxter, executive director of the Ottawa-based Canadian Hospice Palliative Care Association.

‘[My children] know that I can be out of here at any time. I’m at God’s calling right now’

Before any change in law regarding euthanasia, the organization says every jurisdiction in the country should move swiftly to improve access to end-of-life care, including hospice care.


The goal of hospice care is to determine what’s important, and what is meaningful, when patients know that no heroic intervention is going to take away their disease.

They are places that celebrate life through death, says Debbie Emmerson, director of Toronto’s 10-bed Kensington Hospice.

“We’ve had football parties here, we’ve had baby showers.” Some patients arrive at the hospice, the former chapel of St. John the Divine, in their finest outfits — full makeup and wig, or their hair done up. “They’re just trying their very best to be as dignified and normal as possible,” Ms. Emmerson says. The hospice has cared for prominent doctors and the homeless, for patients in their 20s to centenarians.

“There are a lot of questions about, what’s going to happen next? Where am I going next? Is there a God? Is there reincarnation?’” Ms. Emmerson says. “We don’t have those answers, but we can certainly sit and listen.”

They call it sitting with suffering — “creating this presence so that you know that you’re not totally alone in this journey that you are having.”

Elizabeth (Lynn) Douglas was moved to Kensington in March 2013. She was a vice-president at the Princess Margaret Cancer Foundation, a role she took on after a long and successful private-sector career. The day after she was admitted, the resident doctor went to her room and introduced himself. “We chit-chatted for a minute, and then Lynn turned to him and said, “So, how is this going to go?” her husband, Cameron, remembers. She applied the same attitude towards her diagnosis as she did to her career and life. “She was incredibly pragmatic about things.”

Ms. Douglas was first diagnosed with breast cancer in January 2010. She had chemotherapy and radiation but then the odds gradually started to build against her, and when it was gently suggested she and Cameron visit Kensington, they did so, “never imaging it would come to that,” he says.

They decorated her room with family photos, of Ms. Douglas with her wonderful boys, Scott and Todd. She had her favourite crossword puzzle pajamas and the stuffed animals friends gave her while she was in hospital. They brought in a music therapist who played A Million Stars on her violin.

Ms. Douglas spent five weeks at Kensington. In the last week, he and his sons took shifts, sleeping in her room overnight. “We needed to be there, we needed to ride it out with her.”

‘There are a lot of questions about, what’s going to happen next? Where am I going next? … We don’t have those answers, but we can certainly sit and listen’

Ms. Douglas passed away on April 23, 2013, one day shy of her 64th birthday.
Early in her diagnosis, she told her husband that, “when life has meaning, all is worthwhile.” It helped her accept palliative care as the next, and final, step in her life, he said.

Yet research from B.C. suggests three-quarters of those who die are never identified as people who could benefit from end-of-life care.

Generally, patients require a life expectancy of three months or less to get referred. But for non-cancer diseases, such as advanced heart failure, dementia or chronic kidney disease, it’s difficult to predict when patients will actually die.

“So people with end-stage dementia or the very frail — they need bed lifts. They want to die at home. But there’s nothing out there [for them] if I can’t say with any certainty they’re going to die in three months,” says Dr. Ross Upshur, Canada Research Chair in primary care research.

“What happens is they get the runaround through the system and brutally treated. They get bounced through services, they get bounced in and out of hospitals and anybody who has an older parent that they’ve tried to get appropriate care for knows it,” Dr. Upshur says.

The Temmy Latner Centre for Palliative Care at Toronto’s Mount Sinai hospital provides round-the-clock, in-home care by doctors based not on life expectancy, but on need. Their palliative home care patients are less likely to be admitted to emergency in the last weeks of life, and less likely to die in hospital.

“We can do a lot for people at home, but they have to buy into a certain approach that they are opting not to have the high degree of intervention that can happen in a hospital,” says director Dr. Russell Goldman.

Dr. Chochinov believes good palliative care can address the fears driving support for euthanasia.

But others say there is some suffering even the best care cannot touch.

In a study published in September, researchers examined the frequency and intensity of symptoms in the last seven days of life among cancer patients who were able to communicate and who died in an acute palliative care unit. On a scale of “none” to the “worst possible,” patients scored symptoms such as pain, fatigue, nausea, depression and anxiety.

Despite intense care, some patients still suffered as they approached death.

For a small number of people, Dr. Upshur and others say, a better death will mean a doctor-assisted one.

Some say it is already happening in Canada.

Complete Article HERE!

How Americans’ refusal to talk about death hurts elderly people

by Sarah Kliff

In my family, we don’t really talk about death. But, every now and then, we joke about it.

For some reason, there is a running joke among my immediate family about how my parents will die. Specifically, my brother and I will come home for Thanksgiving one year and find them decomposing on the couch.

Yes, this is a bizarre thing to crack jokes about. But it’s also, in its own, ghoulish way, a bit of a fantasy — an affront to the way that Americans tend to die in the 21st century, with ticking machines and tubes and round-the-clock care. In this joke, my parents’ death is a simple, quiet, and uncomplicated death at home.

I joke about death because I am as terrified of having serious end-of-life conversations as the next person. Usually I don’t have to think much about dying: my job as a health-care reporter means writing about the massive part of our country devoted to saving lives — how the hospitals, doctors, and drugs that consume 18 percent of our economy all work together, every day, to patch up millions of bodies.


But recently, the most interesting stories in health care have been about death: the situations where all the hospitals, doctors, and drugs in the world cannot halt the inevitable.

In September, Ezekiel Emanuel — an oncologist, bioethicist, and health-policy expert — wrote a powerful essay for The Atlantic about why he will no longer seek medical treatment after he’s 75. “Living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived,” he wrote. At 75, Emanuel says, he will become a conscientious objector to the health-care system’s life-extending work. “I will need a good reason to even visit the doctor and take any medical test or treatment, no matter how routine and painless. And that good reason is not ‘It will prolong your life.’ I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative — not curative — treatments if I am suffering pain or other disability.”

The following month, Atul Gawande, a surgeon, published his new book, Being Mortal: Medicine and What Matters In the End. He argues that his profession has done wonders for the living, but is failing the dying. “Scientific advances have turned the processes of aging and dying into medical experiences,” he writes. “And we in the medical world have proved alarmingly unprepared for it.”

After months of watching this debate unfold, I’ve realized something that feels, to me at least, like a revelation. This conversation isn’t about death at all. “Death” is the word that confuses the conversation, that makes people too afraid, and too angry, and too frantic to keep talking. This conversation is really about autonomy. It is about what makes life worth living, and if, in keeping people alive for so long, we are consigning them to a fate worse than death.

When death came quick and fast, there was no fight to remain autonomous. Two graphs near the beginning of Gawande’s book help make clear how recently this tension developed. There is this first graph, which shows what life used to be like a century ago: moving along, steadily, until some horrific event happened. Maybe it was a disease, maybe it was a car accident (or, even earlier, a horse and buggy accident). Whatever the event, death happened quickly.

 (Metropolitan Books)

Modern medicine has done incredible things. A woman born in the United States in 1885 had an average life expectancy of just over 44 years. I was born in 1985 and, thanks to advances in technology and sanitation, my life expectancy is 82. But these improvements have also changed, and extended, how we die. “The curve of life becomes a long, slow fade,” Gawande writes.

 (Metropolitan Books)

That slow, long fade means we get to live longer, but often at the cost of our autonomy, and, in the view of some, at the cost of our most essential self. Autonomy — the freedom to see the people we want, partake in the activities we enjoy, and wake up each morning to our own agenda — is a value that arguably all of us hold dear. Even as physical independence disappears, it is possible (albeit more challenging) for autonomy to remain and for the elderly to retain control of how they spend their days.

But aging makes the facilities, both mental and physical, that we need to maintain our autonomy, weaker. The activities we enjoy and the ones we find core to our identity become more difficult to pursue.

As we get older, we lose the mastery we once had over the world around us, the admiration we once inspired in those we loved. Simple tasks — driving to a family member’s home, grocery shopping, preparing meals — become harder. The things we want to do aren’t always things we can still decide to do. Emanuel writes about the plight of his father, who had a heart attack followed with a bypass surgery at age 77. It was more difficult to do the things that defined his existence:

Once the prototype of a hyperactive Emanuel, suddenly his walking, his talking, his humor got slower. Today he can swim, read the newspaper, needle his kids on the phone, and still live with my mother in their own house. But everything seems sluggish. Although he didn’t die from the heart attack, no one would say he is living a vibrant life.

Emanuel doesn’t see this as unique to his father. He thinks this is the norm — that we have fooled ourselves into believing we have prolonged life, when instead we have prolonged the process of death. He writes that half of people 80 and older have functional limitations, and a third of people 85 and older have Alzheimer’s. And as for the remainder, they, too, slow and stumble, in mind as well as body.

“Even if we aren’t demented, our mental functioning deteriorates as we grow older,” he says. “Age-associated declines in mental-processing speed, working and long-term memory, and problem-solving are well established. Conversely, distractibility increases. We cannot focus and stay with a project as well as we could when we were young. As we move slower with age, we also think slower.” We become necessarily capable of making the decisions that we used to. Our bodies and brains simply won’t allow it. This isn’t to say autonomy disappears, but that it takes more support and conscious effort to plan.

Emanuel’s argument is fundamentally pessimistic about the future that we all face: it suggests that, even as we learn more about extending life, we won’t be able to improve the quality of life that precedes death.

Gawande’s book acknowledges that the body will break down, too. The second chapter, “Things Fall Apart,” is devoted to the ways that our body — from the color in our hair to the joints of our thumbs — diminishes at the end of life.

There are sections from this chapter that haunt my nights. The brain shrinks an astonishing amount in the course of a normal lifetime, with the frontal sections that control memory and planning diminishing the fastest. “At the age of 30, the brain is a three-pound organ that barely fits inside the skull,” Gawande writes. “By our seventies, gray-matter loss leaves almost an inch of spare room.” This explains, by the way, why falls can be so damaging for the elderly: their brain has a spare inch of space to get jostled around.

“Living too long is also a loss,” he writes. “It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived.”

Most of us look at nursing homes — with their scheduled meals, constant supervision, adult diapers, wheelchair-bound residents, and depressing bingo nights and we think: I do not want that. I do not want to give up control over my own life, my ability to see the people I want to see and do the things I want to do. I do not want to live a life where I can’t dress myself, where I’m not allowed to feed myself, where I’m barred from living any semblance of the life that I live right now.


As Gawande points out, assisted living and nursing facilities sometimes rob residents of the autonomy they’d have elsewhere. A patient who is bedridden, for example, likely ends up eating on a schedule to fit into the nurse’s rounds — not whenever they feel like having a snack. Getting dressed can be handed over to staff because they can do it more efficiently.

“Unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls,” he writes. “Gradually, that’s how everything begins to go. The tasks come to matter more than the people.”

But somehow, millions of Americans end up with life: there are 1.5 million nursing-home residents in America right now. On average, those nursing-home residents live in these facilities for two years, three months, and 15 days.

Here, however, Gawande identifies an unexpected culprit: the young, not the old.

At one point in the book, Gawande speaks with Keren Wilson, the woman who opened the country’s first assisted-living facility. And she gave him one of those quotes that every reporter dreams of — a single sentence where, after hearing it, you can’t ever look at the issue in the same way again. “We want autonomy for ourselves and safety for those we love,” she says.

One reason that nursing homes are so soulless is that it’s often not the residents who made the decision about where they would live. Instead, it’s their caretakers — often adult children — who chose the home, and their end-of-life priorities are frequently different from their parents’. Namely, where their parents value autonomy, children value safety. Wilson continues:

Many of the things that we want for those we care about are the things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.

It’s the rare child who is able to think, “Is this place what Mom would want or like or need?” It’s more like they’re seeing it through their own lens. The child asks, “Is this a place I would be comfortable leaving Mom?”

Gawande argues that what’s wrong with how we die now is that the patient — the person facing the end of life — is not the decision-maker. The locus of power shifted away from the people who will actually experience living in a nursing home and into the hands of their full-grown children, who often pay much of the bill.

Gawande and Wilson don’t argue that children are acting maliciously, trying to thwart the life that their parents wish to lead. It’s just that grown children and their elderly parents often have conflicting views of what matters at the end of life. Children often want every precaution taken to prevent injuries and falls. The elderly often want to live as autonomous a life as they can, even if it entails more risk. There’s one 89-year-old woman Gawande talks to who makes this point especially clearly, echoing what the dozens of other elderly interviewees told him:

“I want to be helpful, play a role,” she said. She used to make her own jewelry, volunteer at the library. Now, her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days … it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.

One of the more depressing anecdotes in Gawande’s book details how food has become a battleground in nursing homes; the “Hundred Years War,” as he describes it. The battles — with a diabetic who hoards cookies, the Alzheimer patient who wants to eat at non-standard meal times — exemplify the tensions between safety and autonomy that pervade the modern nursing-home experience.

“We make these choices all the time in our home and taking those away from people takes away really fundamental things about who they are, what makes a life worth living,” Gawandetold me in an interview. “The biggest complaints about patients in nursing homes — by the way you can get a report filed against you in a nursing home — are about violating food rules. So you’ll see Alzheimer’s patients hoarding cookies. Give them the damn cookie. They might choke on it, but what are we trying to keep them alive for? Let’s allow some risk, even in the Alzheimer’s patient.”

Section 1233 begins on page 425 of the House’s final draft of the Affordable Care Act. It’s a relatively tiny portion of the law, taking up nine of the bill’s 1,017 pages. It didn’t have much of anything to do with Obamacare’s main goals of expanding coverage or reducing health-care costs.

But Section 1233 became the most politically toxic section of a law rife with contested projects and programs. Section 1233 is where Sarah Palin initially found the so-called “death panels” that would be among the most memorable, and ugly, skirmishes in the Obamacare debate.

Patients, Palin wrote in an August 2009 Facebook post coining the term, “will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide … whether they are worthy of health care.” When asked where she found these death panels in the law, Palin’s spokesperson pointed to Section 1233.

But Section 1233 did nothing of the sort (PolitiFact ultimately named “death panels” its lie of the year in 2009). The provision simply allowed Medicare to reimburse doctors when they provided patients an explanation of “the continuum of end-of-life services … including palliative care and hospice.” This wasn’t a death panel. It was an end-of-life care consultation — a conversation where a doctor would tell a patient about his or her options. They could discuss important issues like would the patient prefer to die in the hospital or at home? If there is no treatment left, would they consider hospice care? What are the things they value at the end of life and how can those be achieved? The doctor would not make the decisions for the patient — the patient and family would make up their own minds about how to proceed.

The “death panel” rhetoric quickly became a popular cudgel conservatives used to bash the law. The Independent Payment Advisory Board, for instance, which would have unilateral power to cut Medicare reimbursement rates, became a “death panel.” (The board, meanwhile, has no power to change the type of benefits Medicare provides or which patients get them — it only has authority over what Medicare pays).

The 2009 Sarah Palin Facebook post that coined the term “death panel” (Facebook)

Death panels signs and slogans popped up at town-hall protests across the country; news stories mentioned the term 6,000 times in August and September, Politifact later found. By October, it still came up at least 150 times per week — and Section 1233 was doomed. Legislators saw the backlash and quickly relented. They left the end-of-life planning provision on the cutting-room floor.

The explosive death-panel debate, touched off by the smallest, weakest attempt to talk about the inevitable, shows just how impossible it is for America and the people we send to Washington to have this particular discussion.

Dying in America is expensive. The six percent of Medicare patients who die each year typically account for 27 to 30 percent of the program’s annual health-care spending. During the last six months of life, the Dartmouth Atlas has found that the average Medicare patient spends 9.9 days in the hospital and 3.9 days in intensive care. Forty-two percent see 10 or more doctors.

In Washington, something so costly typically forces constant conversations about cutbacks and trade-offs and balancing priorities. But with end-of-life care, the opposite tends to be true: we can’t talk about the cost of dying because it sounds like a discussion about rationing. Taking cost into account feels callous and inappropriate in the context of death.

But that’s left, in its place, not a thoughtful approach towards end-of-life care, but a dumb default that pushes everyone — doctors, patients, and families — toward more tests, surgeries, and treatments, no matter the cost in pain and disability to the patient.

The fear at the heart of the death-panel debate was a fear about the loss of autonomy: that a group of anonymous bureaucrats would make the decisions that ought to be reserved for the terminally ill.

That’s a terrible system. No Democrat, Republican, nor any health-policy expert I’ve talked to sees that as the right approach for America.

But they also point out that our haphazard approach to death isn’t especially good at respecting the rights of the dying, either. We don’t like to think about death — and so we don’t. The death-panel debate affirmed that legislating end-of-life issues is terrible politics, so politicians simply avoid it. The result isn’t a more compassionate policy, but a vacuum of policy.

The dearth of debate and discussion doesn’t eliminate the difficult, heart-wrenching decisions that patients, doctors, and their families must make at the end of life. It arguably exacerbates them: not paying doctors to discuss end-of-life issues with Medicare patients, for example, likely means they know less about what patients want at the end of life. By the time the issue simply can’t be ignored, it’s often too late — the patient is already incapacitated or too delirious to articulate his or her priorities.

Much like nursing homes get to decide who eats what, and when, unarticulated end-of-life decisions get outsourced to family members and doctors who make their best guess at what a loved one would have wanted. Patients, in a way, end up living the exact scenario that the death-panel rhetoric made so fearsome: giving over decisions about their last moments of life to another party.


There’s a beautiful story that Gawande tells in his book, about a man named Jack Block. At 74, he had to decide whether to undergo a surgery to remove a mass growing on his neck. The procedure ran a 20 percent chance of paralyzing him from the neck down — but without it, the growth would definitely leave him unable to move his legs or arms.

This is the moment, Gawande argues, that there has to be a discussion about what makes life worth living. Gawande interviews his daughter, Susan, who is a palliative-care specialist. And even though this is her line of work, she tells him that the conversation about this surgery was “really uncomfortable:”

We had this quite agonizing conversation where he said — and this totally shocked me — ‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’

Susan says this wasn’t the answer she expected; she didn’t even remember her father watching football. But just hearing what mattered — knowing what Jack would consider a life worth living — ended up guiding all further decisions. When Susan’s father developed spinal bleeding, she asked the surgeons: will he be able to watch football and eat ice cream? The answer was yes. They kept going with treatment, until the answer was no.

“Few people have these conversations, and there is good reason for anyone to dread them,” Gawande writes. “They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.”

But these conversations could be the starting point for a health-care system that cares just as well for patients who will heal as those who will not. They’re the place where autonomy gets defined for each patient: whether a life worth living means one where they are able to see friends, or drive their car, or eat chocolate ice cream, or the millions of other things they may hold dear. Those conversations don’t happen now. And as long as that’s the case, all of our autonomy, as we inevitably grow old and become more dependent, is at risk.
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Rural Doctor Launches Startup To Ease Pain Of Dying Patients

By April Dembosky

Dr. Michael Fratkin is getting a ride to work today from a friend.

“It’s an old plane. Her name’s ‘Thumper,’ ” says pilot Mark Harris, as he revs the engine of the tiny 1957 Cessna 182.

Fratkin is an internist and specialist in palliative medicine. He’s the guy who comes in when the cancer doctors first deliver a serious diagnosis.

He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they’re willing — and not willing — to undergo.

In rural Humboldt County, in the far northern reaches of California, Fratkin is essentially the only doctor in a 120-mile stretch who does what he does.

“There’s very little sophisticated understanding of the kinds of skills that really matter for people at the very end,” he says.

It takes 30 minutes to fly from Eureka, Calif., to the Hoopa Valley Indian Reservation. On this trip, Fratkin is going to visit a man named Paul James, who is dying of liver cancer.

“A good number of patients in my practice are cared for in communities that have no access to hospice services,” Fratkin says.

The plane touches down on a narrow landing strip. A loose horse runs next to the plane as we taxi down the runway.

Fratkin is here to make a rare house call. He met Paul and his wife, Cessie Abbott, at the hospital in Eureka. But the two-hour drive is too far for them to make often, so Fratkin comes to them.

It’s a visit that Cessie, in particular, has been waiting for. She and her husband know he’s dying. But it’s hard for them to talk to each other about it.

“Dr. Fratkin has kind of been my angel,” she says. Fratkin gets her husband to open up, she says, and reveal things he might not otherwise, because Paul’s “trying to be strong for us, I think.”

Cessie tells Fratkin that the pain in Paul’s belly has been getting worse.

“He’s moaning in his sleep now,” she says.

“Have you ever taken morphine tablets?” Fratkin asks Paul. Cessie explains that those tablets didn’t work for her husband. “Have you ever taken methadone?” Fratkin asks him. “We’re going to add a medicine that is long-acting.”

Fratkin believes there should be a spiritual component of these discussions, too.

“Yeah, Paul, there’s more to you than this body of yours, isn’t there?” he says, a refrain he repeats with almost all his patients.

“Oh yeah,” Paul says, and then goes quiet for a bit. He’s a member of the Yurok tribe, and talks about how happy he is when he’s in the mountains, hunting with his grandsons.

Cessie says she can hear Paul praying when he’s alone in the bathroom. So Fratkin asks him to light some Indian root and say a prayer now.

“Great spirit, that created this earth …,” Paul begins, his eyes clenched shut.

By the time Fratkin leaves the Hoopa Valley, he’s spent half a day with one patient. This is something the hospital in Eureka just couldn’t afford to have him do.

Fratkin says he was under constant pressure to see patient after patient to meet the hospital’s billing quotas.

“It’s very hard for one doctor to manage the complexity of each individual patient and to crank it out in any way that generates productive revenue,” he says.

Fratkin decided he couldn’t, within the hospital system, easily provide the kind of palliative care he sees as his calling. So he decided to quit — and launch a startup.

“I had to sort out an out-of-the-box solution,” he says.

He calls his new company ResolutionCare. There’s no office, no clinic. Instead he wants to put the money for those resources into hiring a team of people who can travel and make house calls, so that very ill patients don’t have to get to the doctor’s office. When time is stretched, he plans to use video conferencing.

The key challenge is financing his big idea. Government programs like Medicare and Medicaid don’t pay for video sessions when the patient is at home. And they pay poorly for home visits.

So far, Fratkin has been cultivating private donors and is looking for foundation grants. He’s arranged an independent contract to sell his services back to the hospital he recently left. And he’s launched a crowdfunding campaign to back the training he’d like to do for other doctors of palliative medicine who practice in rural areas.

Down the line, Fratkin is even thinking of asking some of his more well-off patients to pay out-of-pocket for his services.

When he gets back to Eureka, after the visit with Paul James, Fratkin hops in his blue Prius and drives 30 minutes north to see Mary Maloney. She’s dying of esophageal cancer. She tried radiation and chemo for a while, but both made her feel awful. Fratkin was the one who told her it was OK to stop treatment.

“I mean, I love life,” Maloney says from the recliner in her home in Blue Lake. “I don’t want to let it go. But I don’t know if I’m willing enough to put myself through all the things I’d have to put myself through.”

Fratkin says he’s treated more than a thousand patients and, like other entrepreneurs with big ideas, thinks his startup could change the world. He knows he’s up against tough odds though — most startups don’t succeed.
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Pain management struggles in the 21st Century

By Tracy Woolrich

According to the American Pain Foundation, there are more than 50 million Americans living with chronic pain. What is unfortunate however is that chronic pain is often improperly treated – or not treated at all. Those with chronic pain will tell you that they feel that there is a war being waged against those who are truly in pain. The answer is to find treatments that work, empower yourself and educate those in the community.


As a nurse with more than 30 years of experience I have witnessed more than my share of pain. During my student nurse days I remember the days of “Brompton’s Cocktail”. It originated in London’s Brompton Hospital and was a concoction made with morphine, cocaine, alcohol and chloroform water. It gained popularity in the 1970s through the Hospice movement with support of Elisabeth Kübler-Ross. However, with advancements during the 21st Century it no longer exists. I personally am glad, as from what I witnessed it did appear to reduce the patient’s pain however at a cost of the ability to have a level of awareness. The patient would be nearly in a coma from sedation. We have come a long way in the ability to control pain effectively. Obtaining and maintaining a proper dose however is another story.

In 2006, the American Pain Foundation surveyed their members and discovered that over 60 percent experienced breakthrough pain while taking routine pain medications. In addition, 75 percent also suffered from insomnia and depression. Activities of daily living were affected with over 25 percent indicating that even driving a car was too difficult to do.

chronic-painThat organization developed the Pain Care Bill of rights and encouraged patients to take an active position in their treatment plan. In my previous position working with chronic pain patients, I would frequently obtain guides and resource items from them to share with their healthcare providers.
In 2011, the Affordable Care Act required the Institute of Medicine to do a study about pain management. In that study it was reported that more than 100 million Americans are suffering from chronic pain. That is staggering and the highest numbers to date.

Despite the growing number of people that are in pain, the war on drugs rages on and in its path there is a tremendous amount of collateral damage. Patients that are truly in pain suffer, and organizations that become advocates and partners cannot sustain themselves. Regrettably in May 2012, the American Pain Foundation dissolved their organization due to lack of funding. They transferred a good deal of their education to other organizations and support groups in hopes of continuing their cause.

Their Pain Care Bill of Rights was a groundbreaking proposition in my opinion. It was an attempt to empower those in pain to take an active role in their care. One of the key concepts was the right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.

Because of society’s drug addicted behavior, there have been more and more restrictions placed that are making it difficult for those in chronic pain to obtain relief. Misguided state and federal policies are restricting access to appropriate medical care for people in chronic pain. It is deterring even the most compassionate medical providers from treating anyone with pain conditions for fear of governmental scrutiny and penalties.

Better ways to manage pain are continually being developed. With relief as the goal, patients usually try various pain management techniques (often in conjunction) before they determine what works best for them. It is a very individual thing and may change over time.

There is a myriad of available medications that can be prescribed. From over the counter analgesics like NSAIDS (Motrin and Aleve) to Narcotics (Morphine, Hydrocodone, Codeine). While pain medications will assist in reducing the pain they do little to change the cause other than perhaps NSAIDS that may reduce swelling. As time goes on doses are often increased due to tolerance and often there are side effects such as constipation and stomach upset.chronic-pain-management

Exercise can assist with pain relief in individuals with arthritis. Yoga, tai chi and water aerobics are all very helpful. Some with Fibro and chronic headaches may find the stretching portion helpful.

Massage can reduce pain, increase tissue circulation, relax tight muscles and reduce swelling. In addition it can reduce anxiety and depression and help promote a better night’s sleep. Patients with headaches, arthritis and traumatic injuries will find this helpful. Those with Fibro may find it too painful. Cranial-Sacral work or Reiki may be more appropriate.

This uses a combination of combination of visualization, relaxation, visualization, and feedback from a machine that may help you to gain control of pain. Electrodes are attached to you and plugged into a machine that measures your muscle tension, blood pressure and heart rate. In time you are able to control your thoughts and tension and thus reduce pain and anxiety. It is very effective with headaches.

TENS Units
Transcutaneous electrical nerve stimulation uses low voltage electrical stimulation to block pain signals to the brain. This is accomplished through the placement of small electrode patches on the skin that is attached to a portable unit that emits a small electrical charge. It is used for pain in a localized area. Individuals with nerve pain such as diabetic neuropathy or trauma may find this useful.

Meditation / Relaxation
Through the use of guided imagery and meditation techniques, muscles can have reduced tension and general relaxation. Those with all forms of pain will find this helpful especially headaches and nec/back pain.

Deep breathing
Yoga type diaphragmatic deep breathing involved clearing your mind and focusing on slow deep breaths that are rhythmic. This method of breathing involves breathing in and out, slowly, deeply, and rhythmically. It is through its process of inhaling through the nose and exhaling through the mouth you can release tension and induce relaxation. All those in pain will find this helpful.

Water Therapy
Warm water baths or hot tubs can be soothing and relaxing for muscle and joint pain. Water aerobics is often easier on the joints and can increase range of motion. Patients with arthritis and fibromyalgia may find this helpful.

Hot showers or baths, hot packs, heating pads and paraffin wax baths to hands and feet are especially helpful with arthritic pain.

Cold therapy is a preferred treatment for some people as opposed to heat therapy. Most chiropractors will advice to use cold to reduce swelling and numb the pain to local injuries. Cold compresses or the simple act of wrapping a plastic bag filled with ice cubes, or frozen gel packs can be applied locally. Those with Reynaud’s should avoid the cold.

Pain Management Clinics
Pain clinics are for those who cannot be helped by medical and surgical treatment options by their primary doctors. It usually involves prescription drug management, physical therapy, nerve blocks and relaxation therapy. Often primary care doctors will refer you to such a clinic for pain management if you suffer from chronic pain. This is twofold. It may help to reduce your pain while allowing the attending doctor to eliminate having to explain his pain prescriptions to state and federal agencies!

Support Groups
Sometimes connecting with others that have similar circumstances can not only provide a wealth of information but inspiration to keep going. Only another person experiencing the same level of struggle can understand.

Take home message
Encourage your health-care provider to inform you about the possible causes of your pain, and possible treatments including alternative therapy. Request to have your pain be reassessed regularly and your treatment adjusted if your pain has not improved. Request a pain management referral if your pain does not subside.

Are there other methods you have used to reduce pain? Please leave a comment and explain your experience.
Complete Article HERE!

Arguments against Brittany Maynard’s assisted suicide ignore her point of view on suffering

by Kelly Stewart

Brittany Maynard died earlier this month.

Diagnosed with incurable brain cancer at 29 and given six months to live, Maynard relocated to Oregon to take advantage of the state’s death with dignity law. The law permits “mentally competent, terminally ill patients with a prognosis of six months or less to live” to access, as Maynard describes it, “the medical practice of aid in dying.”dignity_human

Maynard became an advocate and public face for the death with dignity movement. In an opinion piece for CNN and a widely viewed video, she describes the severity of her physical and emotional suffering, the comfort of knowing she can “end [her] dying process if it becomes unbearable,” and the importance of making that option available to people without the “flexibility, resources and time” that allowed her and her husband to relocate.

“Consistent life” Catholics have been some of Maynard’s most fervent critics. Pope Francis didn’t mention her by name but denounced the “false sense of compassion” that motivates death with dignity and abortion rights laws. Various other Catholic responses have characterized her death as evidence of the cheapening of human life; an act that denies the dying person’s responsibility to others; an affront to the dignity of dying people; or even a “slippery slope” that leads to eugenics and genocide. And consistently, Maynard’s Catholic and other Christian critics have appealed to the redemptive value of suffering.

Michael Sean Winters’ blog post “Brittany Maynard’s Suffering” is representative. He writes: “Christians must reclaim the ability to embrace suffering.” He offers a few caveats: We shouldn’t be masochists, and we should work to alleviate some forms of suffering, especially “those varieties of suffering in which we are complicit.” Still, he insists, “in the face of some experiences of suffering, we must never lose sight of the need to embrace it.”

Death with Dignity CampaignFor Winters, Maynard’s decision is fundamentally about a refusal to embrace suffering as meaningful — and, therefore, a refusal to acknowledge human finitude, vulnerability, and radical dependence on God. He characterizes this as a U.S. cultural as well as a generational problem. Children and young adults today, he suggests, have been sheltered from the raw experiences of pain and loss that accustomed earlier generations to the inevitability of suffering and instilled respect for its spiritual value.

Cathy Lynn Grossman’s blog post for Religion News Service “Does Suffering Have Spiritual Meaning?” takes a similar approach. Like Winters, Grossman frames the death with dignity question in terms of a spiritual vs. secular divide. The religious voices she includes in her article all oppose right-to-die laws: a Baptist woman whose teenage daughter has brain cancer, Popes Benedict XVI and John Paul II, and Jesuit Fr. Kevin Fitzgerald.

“When can we say that the potential to grow or overcome or bear that suffering, that potential which made that suffering meaningful, is gone forever?” she quotes Fitzgerald as saying. “Why do we think someone is enlightened enough to know their suffering is not redemptive?”

Grossman does not, however, spend much time on Maynard’s moral reasoning. Instead, she frames Maynard’s decision as a secular, perhaps youthful abandonment of serious reflection on suffering.

“Her choice to die,” Grossman writes, “may reinforce to many — particularly religiously-disengaged millennials — that spiritual meaning, like suffering, is up to you.”

Readings these responses, I have been struck by how tenaciously Maynard’s critics avoid engaging her actual arguments and how little detail they offer in support of their own positions.

They write moving personal reflections on the deaths of loved ones. They offer general tributes to the relationship between love and vulnerability and suffering. They incorporate a few laments about secularism and young adults. But their discussions of Maynard, the death with dignity movement, and even their own theologies of suffering seem to remain at a general level.redemptive-suffering-statue-with-tears

That’s a problem, because when we discuss a concept whose history is as ugly as that of “redemptive suffering,” it is irresponsible to be vague. When we discuss the Christian meaning of suffering, it is irresponsible to ignore decades of feminist, womanist, and postcolonial work on the problems with its valorization in Christian theology. And when an actual suffering and dying person tells us, “This is more than I can bear,” it is irresponsible and cruel to respond that she couldn’t possibly know that.

Before she died on Nov. 1, Brittany Maynard made a case for the right of terminally ill people to end their suffering quickly. She argued that no one else could say when her suffering became intolerable, when her life became unlivable, when her dignity was diminished, or how she was to face her painful and untimely death.

If you read her arguments, listen carefully to her experiences of illness, and maintain — from a position of relative health and safety — that Maynard should nonetheless have embraced her suffering as a redemptive experience, please be careful, suspicious of yourself, and painstakingly detailed in how you make that case.

Under what conditions is suffering redemptive? By what criteria do you distinguish suffering that should be alleviated from suffering that should be embraced? When should your theology of suffering be imposed on people who do not understand their suffering as redemptive? What are the consequences of doing that? What are the consequences of not doing that? Is the embrace of suffering as “countercultural” for others as it is for you? And how do you know you’re right?

These sorts of questions should guide discussions of Brittany Maynard’s death and activism. And they should make us very cautious about finding grace in someone else’s suffering.

Complete Article HERE!

Right-to-die advocate’s video released after death

By Gosia Wozniacka

Nearly three weeks after her death, on what would have been her 30th birthday, Brittany Maynard returned to the national spotlight on Wednesday in a video (see below) in which she urges states to pass laws allowing terminally ill people to end their lives on their own terms.brittany_maynard_01

The video, made in August, was released by an advocacy group that worked with Maynard during the last months of her life in a campaign that prompted a national debate about allowing terminally ill people to hasten their deaths.

The group, Compassion & Choices, is hoping that the practice will be expanded beyond the five that already allow it: Oregon, Washington, Montana, Vermont and New Mexico. But even though Maynard’s story received national attention, the groundswell of support on a legislative level for laws like Oregon’s has yet to materialize.

Compassion & Choices held a conference call with journalists on Wednesday, hoping to build on the momentum generated for the movement while Maynard was alive. After the news conference, the organization released a video that is partly narrated by Maynard.

In the video, Maynard says: “I hope for the sake of other American citizens … that I’m speaking to that I’ve never met, that I’ll never meet, that this choice be extended to you.”

The video includes photographs of Maynard before her illness. It also features the voices of other terminally ill patients and their family members.

In the conference call, Compassion & Choices officials said legislators in about a dozen states plan to introduce right-to-die laws next year.

Also on the call were legislators from Pennsylvania and Wyoming.

Rep. Mark Rozzi, a Pennsylvania Democrat whose 63-year-old father died of the same type of brain cancer as Maynard, said the young woman’s campaign and his family’s situation made it apparent why such bills are needed.

“I had to watch my father die of cancer… It was the most gut-wrenching experience our family and he had to endure,” Rozzi said. “He would always tell me this is not the way he wanted to live.”

A “death-with-dignity” bill was introduced in Pennsylvania last month. Rozzi conceded that it has been difficult getting bills out of the judiciary committee when they are opposed by the state’s Catholic leadership.

Rep. Dan Zwonitzer, a Wyoming Republican, said he plans to introduce such legislation in his state.

Oregon was the first state to allow terminally ill patients to die using lethal medications prescribed by a doctor. Maynard moved from California to Oregon to make use of the Oregon law.

The New Jersey Assembly passed a bill last week that would allow physicians to prescribe life-ending drugs to terminally ill patients, with some legislators citing Maynard’s story as a deciding factor in their vote. But Republican Gov. Chris Christie has said he opposes the measure.

In California, the West Hollywood City Council this week passed a resolution that urges the Los Angeles County District Attorney to not prosecute physicians and family members who offer aid in dying to the terminally ill. But the state has no current bills or ballot measures on the issue.

Some religious groups and social conservatives, including a Vatican official and the American Life League, have heavily criticized Maynard’s decision. Pope Francis denounced the right-to-die movement Saturday, saying the practice is a sin against God and creation and provides a “false sense of compassion.” He didn’t refer specifically to Maynard’s case.

Compassion & Choices said its website has had more than 5 million unique visitors during the past month, while Maynard’s two previous videos have been viewed more than 13 million times on YouTube alone.

“I sense immense momentum right now,” said Barbara Coombs Lee, president of Compassion & Choices. “Brittany Maynard is a new voice for a new generation of activists … she devoted her precious energy to help ensure other dying Americans would have a choice.”

Coombs Lee co-authored Oregon’s Death with Dignity law in 1993. She told KATU, “Brittany Maynard was 10 years old then. It’s an honor to carry on her legacy. It’s been 20 years of preparation for a witness like Brittany Maynard — to get this movement where it needs to be.”

Compassion and Choices said there may be more videos released. Maynard recorded countless hours of video in preparation for her death, and the movement she wished for.

A vigil to mark Maynard’s birthday is planned Wednesday night at the First Unitarian Church in downtown Portland. It begins at 6 p.m.
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