The Fallacy of ‘Giving Up’

The critical role of talking with a doctor about values and priorities in life—at any age

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!

Sometimes there is no cure: Doctors, machines and technology can keep us alive, but why?

This is Part 1 of a 3-part series.  Look for Part 2 HERE!


by Sharon Kirkey

Before starting medical school, James Downar believed that doctors have a moral duty not to let patients die without doing everything to keep them alive. Then he started to experience how lives actually ended.

Many deaths were peaceful. Many were not. He witnessed patients dying of lung cancer who suddenly began coughing up blood, drowning before they could be injected with morphine to relieve their distress.

He observed the older man with advanced liver cancer whose wife kept insisting on aggressive care even though he clearly was dying. The man was admitted to the intensive care unit with cancer-related pneumonia, and then developed a catastrophic bleed in his stomach. His body swelled from repeated ineffective blood transfusions, his kidneys shut down and he never regained consciousness. He died without saying goodbye to his children.

End of Life“You cannot see these deaths and not be moved. They are just so unnecessary,” says Downar, a critical- and palliative-care doctor at the University Health Network in Toronto. “We had every opportunity to intervene and provide these patients with better end-of-life care, and prepare their families for what was inevitable.”

In the first of a three-part series on how we could end our lives better, Postmedia News explores the reality of death today, when technology allows hospitals to stretch a patient’s last days longer and longer — with questionable results.

“Bad deaths” happen because of an unwillingness to confront that, fundamentally, most diseases cannot be cured, Downar says. They happen because doctors, untrained and profoundly uneasy confronting our deepest fears and anxieties, see death as a failure, and it can sometimes be easier to continue with aggressive treatment than to tell a patient or family, “I can’t turn this around.”

They happen because difficult conversations aren’t happening until there is a crisis and families are in such emotionally hot states they cannot think, concentrate or hear properly.

End of Life - HillcoffMore than 259,000 Canadians take their last breath each year. By 2036, the number will grow to more than 450,00 as the population ages.

Yet most lives do not end suddenly, meaning many people can, if they choose, plan the circumstances of their deaths, and tell their doctors and families what they want, or want to avoid.

One option may soon be legalized euthanasia. The Supreme Court of Canada is on the verge of issuing a landmark ruling into whether Canadians have the constitutional right to assisted suicide — a right Quebec is already preparing to grant terminally ill, competent adults experiencing “unbearable” suffering.

But even in jurisdictions where assisted suicide is permitted few people request it and, among those who do, many never go through with the act.

“Physicians are taught from the beginning to diagnose and treat, to diagnose and cure, to diagnose and make better, or at least control,” says Dr. Angela Genge, director of theALS clinic at the Montreal Neurological Hospital.

“The fact that you’re dealing with death means that somehow you can’t make the patient better, you can’t control. And some people are fundamentally afraid of that.”

Advances in medicine and fund-raising slogans about “winning the war on cancer” have led to unrealistic expectations about what medicine can and cannot do. The expectation often is: you can fix this. It’s like the resurrection of Lazarus, says Derek Strachan, a spiritual care professional at the Toronto General Hospital.

“We can do amazing things, and we’ve been surprised. We’ve had people walk out of here that we would never have thought would,” Strachan says. “But it creates this expectation that we are miracle workers. And when we can’t perform miracles, it’s tough.”0122 end of life P1

Pat and Ken Hillcoff had discussed what they would or would not want if faced with a terminal illness. Ken’s father died of ALS. Pat’s mother died of a heart attack when she was 65. They had conversations about never wanting to be kept alive on machines, never wanting to be dependent on others.

“In a black and white world, it’s easy to say you don’t want those things,” Ken said. “But in Pat’s case, nothing was black and white. It was all grey.”

Pat was 57 when she was diagnosed with pulmonary fibrosis — deep scarring in her lungs. The retired primary school teacher was told her she would die without a double lung transplant.

She was sent home on oxygen and waited 14 months for her new lungs. The operation took eight hours. She would spend the next 180 days in intensive care fighting not to die. Her body battled furiously against the new organs. She developed infections and her chest wound had to be kept open for four months to treat the area and debride the bones. Ken saw his wife’s heart beating inside her chest. One day, when the surgeon moved the organs to get to where he needed, he told Ken, “Now two men have touched Pat’s heart.”

Miraculously, Pat rallied. But her kidneys had shut down and so four afternoons a week Ken connected Pat to a dialysis machine, hooking the dialysis tube to the thick, central line that went into Pat’s heart and exited up near her left breast.

In all, she would spend 300 days in intensive care. Ken was there for 299 of them. “Each morning, the doctors would start their rounds, with, ‘Today is day number ‘fill in the blank.’ This is Pat.”

Pat was eventually discharged home. She lived another 24 good and meaningful months on dialysis. Then, in early spring 2014, she was diagnosed with breast cancer. The doctors told her she would not survive surgery, but they offered radiation. She developed an overwhelming infection and spent her last six weeks of life in hospital, confined to bed. On the evening of April 14, Ken kissed Pat goodbye as the nurses connected her to the dialysis machine. “Love you, see you in the morning,” he told her.

Pat died the next morning, before Ken could get back to the hospital. She was scheduled for more radiation that day.

Ken believes Pat’s doctors did everything they could. “She was stubborn — she would call it tough. In the ICU, I never had the idea ‘you shouldn’t really be doing this,’ because you’re hopeful.”

The end wasn’t what Pat had hoped for. “Any death in the hospital is going to be bad, and she suffered a little at the end,” Ken said. He can’t remember being approached to discuss Pat’s wishes, until death was near. “There were so many doctors involved. I could see that it would be easy for someone to think, well, someone else must have discussed this with the family. So nobody ended up talking about it.”

Most of us want to die at home, surrounded by families. The reality is 70 per cent of us will die in a hospital and of those who do, 10 to 15 per cent will be admitted to an ICU. Most Canadians have no written plans about what life-prolonging treatments they would accept or reject, and fewer than half have designated a substitute decision maker to speak on their behalf if they became incapacitated.

Doctors say some families are clear: “My mother would never have wanted this.”

“But some families are absolutely adamant that life-sustaining interventions not be withheld or discontinued,” says Dr. Christopher (Chip) Doig, professor and head of the department of critical care medicine at the University of Calgary.

Many have not fully grasped what they are asking for.

“When I do CPR on somebody I can assure you that I will break their sternum and their ribs,” says Doig, who can often feel the bones cracking beneath his hands during deep chest compressions.

Most patients on ventilators need to be sedated so they don’t try to pull the breathing tube out. The tube burns; it can feel as if someone is pushing a gloved finger down his or her throat. They cannot talk. They cannot eat by mouth. And they need to be suctioned, which involves taking them off the ventilator. They can feel as if they are suffocating. Some patients require suctioning 40 to 60 times a day.

Patients have tubes in almost every orifice — a bladder catheter, a rectal tube, a feeding tube, arterial lines in their groins or wrist, central lines under their collarbone into the main blood vessels close to the heart.

When the interventions seem futile, when none of it is likely to change the “outcome,” the distress on staff can be profound.

ICU nurses provide one-on-one care. They talk not just about their patients, but “my families.” Nurses say there can be few things more distressing than when an unconscious patient grimaces, or reaches out for them, when they are being turned.

They are often the first team members to feel that life-support should be withdrawn.

“Sometimes the nurses are already at the place, thinking, ‘we need to have a family meeting, we need to have some end-of-life discussions here,’ but it may not be on the family’s radar,” said Denise Morris, nurse manager of the medical/surgical ICU at Toronto General Hospital.

“And I think that piece, that waiting for the families to decide, is difficult, because the question in their head is, are we actually doing harm for our patient? Are we prolonging the dying process, rather than prolonging life?”

Without prior conversations or advanced directives, when families have to decide about withdrawing or stopping treatment the choice can be agonizing.

“Families tell us that kind of decision-making is really distressing to them. ‘Don’t ask me to make that decision to take my dad off the vent. I can’t do it,’ ” Morris said.

Experts say that too often the communication focuses on what will not be done — “we should remove the life-support” — which often only provokes the response, “you can’t stop.” Instead, Downar says the emphasis should be on switching from “curative” or life-prolonging care, when there is no hope for recovery, to “comfort” care.

Ottawa oncologist Dr. Shail Verma says when patients trust that everything that can be tried has been tried, the response is often, “I’m exhausted. I would rather focus on the quality of my life and the end of my life.”

But when something has always worked, when a patient with widespread cancer has been saved again and again, “when finally something else happens and you say, ‘the barrel is empty, there’s nothing more to give,’ there can be this disbelief,” Verma said.

“I think the climate today is, ‘there must be something.’ And so inadvertently patients who have incurable catastrophic presentations of cancer still end up on ventilators, they still end up in ICU settings for weeks, until someone has the courage to say, ‘this will never get better.’

Many experts are pushing for more training for doctors on how to handle with skill and delicacy end-of-life discussions with patients.

It’s a conversation doctors dread the most, says Dr. Heather Ross, a cardiologist at thePeter Munk Cardiac Centre and one of the top transplant specialists in the country. “I think it’s just an incredibly difficult thing to do. Trying to find a way to tell somebody that they’re dying but not remove hope so that there is something for them to hold on to is a very big challenge.”

Ross focuses on her body posture and eye contact. If the patient is in bed, she sits. If he’s bolt upright, she stands. Her hands are never in her pockets; her arms are never folded across her chest. She gauges how the patient is taking in the information. Do they accept? Keep going. They don’t accept? Pull back.

“Often I have a very long and established relationship with these patients. I will look them in the eye and tell them that, unfortunately, there isn’t any other treatment I can offer, and that we’re in trouble. Real trouble,” Ross says.

“Oftentimes patients are already there, and we’re the ones struggling to catch up.”

Ross says everyone deserves the right to a dignified death — to be comfortable, to bring closure if needed to issues with family or friends, where caregivers and families aren’t abandoned and people ultimately do not suffer.

Polls supporting euthanasia suggest many of us fear our last moments on earth. Quality, end-of-life care could give more Canadians a gentle exit from this world, Harvey Max Chochinov, a professor of psychiatry at the University of Manitoba, writes in a recent commentary in the journal, HealthcarePapers. But today in Canada, the chance of getting such care often comes down to a “crapshoot,” Chochinov says. “Is it any wonder that people are so afraid?”
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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Life Is But A Dream

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.

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Perspective on death from a dying man

The family stops on a country road. Ted stands outside, listening to the wind as he often enjoys during the road trips. He turns around to look at his children and grandchildren, but they’re already in the car driving away. He’s alone.

Ted wakes up.Ted Dotts

He rustles around and realizes it was a dream Still, it is the closest the 80-year-old Lubbock resident has ever been to fearing death.

Dotts fears becoming an ugly, grouchy old man when medication can’t alleviate his physical pain. But he doesn’t fear death.

He knows it’s inevitable.

He has known that ever since he was diagnosed with prostate and bone cancer in September — ever since he decided to opt against curative treatment for the crippling disease, refusing to put the burden of his health on taxpayers.

“My life — I’m richly happy, probably happier now than I’ve ever been, and that lasts through the day most of the time,” said Dotts, pastor emeritus of St. John’s United Methodist Church. “Death is a matter of releasing me from anything that’s less than God … and I get ushered into a new life and then I’m trusted to make whatever is to be made.”

Preparing for death

Two yellow folders are taped on a closet near the entryway of the Dottses’ home.

Betty’s folder is simple: An out-of-hospital “Do Not Resuscitate” order in case she dies at their apartment at the Carillon LifeCare Community in Lubbock.

Ted’s orders, written in all caps, are more detailed: No CPR. No hospital. No EMS-ambulance. No ER. No antibiotics. No tracheotomy. No breathing assistance devices.

While the doctor’s orders stop there, it’s followed by 12 phone numbers for Betty to call when her husband inevitably dies.

The couple has talked about death for years — not every day, but enough to understand each other’s end-of-life wishes. But after Ted’s cancer diagnosis, death became more imminent.

“(When I found out,) I had a feeling of the heart just sinking, like the bottom had dropped out,” Betty said. “But I also, in my thinking, knew ‘Alright, this is a time to prepare yourself.’ ”

She is not only preparing herself for the emotions that will surround the death of her husband, but the practicality of it.

Without Ted’s help, Betty will be completely alone in running their household, including finances that Ted manages online.

“I don’t like computers, so I’m learning about the computer,” Betty said. “He’s very careful with all our money and how it goes and where it goes to and so forth, so he’s teaching me.”

When a person maps out different scenarios for his death and decides what he’d like to do in each situation, it lifts a burden from any family who may be stressed out about what to do following a terminal diagnosis, said Charley Wasson, executive director and CEO of Hospice of Lubbock.

He said it also takes away second-guessing and allows families to make end-of-life decisions confidently instead of out of fear.

As Betty takes care of her husband during his illness, Ted knows she’s already suffering the grief of losing him.

Ted also experiences grief in not being able to take care of Betty when it’s her time to die.

“I’ll be gone and who will be that close to her? Children, of course, but they have their own lives,” Ted said. “You can hire doctors and nurses, but it won’t be anyone that close to her as she is to me. … That’s a loss that I have and every day I have to see her and know that she’ll have to go through much of this death by herself and won’t have me there to do what she does for me.”

Making the decision

The shots would cost $5,000.

It was too much.

Ted knew the treatment would be covered by Medicare. But, he already had his rules in place, including not using community resources to prolong his life for only a couple of months when he had already exceeded the life expectancy for the average American male.

After the cancer diagnosis, the doctor told him about the recommended treatment, including radiation, surgery and, of course, the shots.

“After you’re 80 years old, some studies show you’ll spend more on the last six months of your life then you spent your first 80 years of your life,” Dotts said. “Some of those expenses are extremely high.”

Created in 1965, Medicare was intended to answer growing reports of impoverished seniors languishing or dying because they lacked health insurance.

According to Centers for Medicare & Medicaid Services, more than 50 million seniors and nearly 3 million Texans are enrolled in the government program. Even though Medicare spending is trending down by nearly $1,200 per beneficiary, overall spending grew 3.4 percent to $585.7 billion in 2013, or 20 percent of the nation’s total health expenditures.

Dotts doesn’t want any part in it.

Instead of spending Medicare funds on prolonging his already fulfilling life, Dotts said he would rather those funds be available for his 18-year-old grandchild or 40-year-old child.

That’s one of the main reasons that outside of pain medication, Dotts isn’t taking anything to treat the cancer.

“I’ve known Ted for years and so he had a very thoughtful, long progression of thought. He’s held this standard that this is how he’s going to die: He’s not going to use community resources and he is going to utilize hospice for years,” Wasson said. “That’s not only a gift to himself but a gift to his family and the people around him. He’s very comfortable in that decision.”

Wasson said he agrees with Ted’s decision to focus on quality of life rather than prolonging it.

“If many people had the opportunity to talk to Ted and his rationale about why he made that decision many years ago, why he’s held true to that decision for many years, I think a lot of people would see wisdom in it,” Wasson said. “But I don’t think a lot of people get to because they don’t have the conversation.”

Ted and Betty moved to the Carillon LifeCare Community seven years ago, knowing they’re at the other spectrum of life.

Although Betty said Americans may be living longer, there’s still a responsibility to take care of future generations.

“It’s just not fair for our children and grandchildren, just because he could spend a lot of money (on cancer treatment) and Medicare would pay for it,” Betty said. “But somebody is paying for that and money is going to be taken from here to give to there and he said, ‘I do not want to take the community resources from others just so I could live a few more months.’ ”

Dealing with the pain

Betty imagines her husband falling to the floor as he’s walking up the stairs to their apartment. Other times she pictures him stumbling and pretending to faint. Betty knows it’s not real; they’re simply imagining for the inevitable.

“There’s so much involved. It’s a major event in life to die and we try to get through it without talking about it, but then all of a sudden you’ll be faced with it,” Ted said. “We get to share that and the rich depth of (imagining death). I thought we were pretty close but we’ve gotten closer than I ever dreamed now that death is next door.”

Although he hasn’t broken any bones yet, Ted’s pain varies on a daily basis. Eventually it was bad enough that he received a shot that doctors assured him was not for longevity, but rather to help alleviate the severe pain.

“They warned him the pain is going to get worse for two weeks and then it will drop, and so on a scale of 1 to 10 he got at least to a 7 and maybe higher,” Betty said. “You can’t sleep when you have that kind of pain, but then it did drop after two weeks and it’s gone down. … Many people live with pain and it’s learning to manage the pain. It’s not that he doesn’t feel it, but it’s where it doesn’t dominate him.”

Despite the pain Ted endures, Betty said she wasn’t surprised by her husband’s decision to receive palliative care rather than curative treatment.

“His personality is one in which he thinks things through and reasons things through, tries to see both sides and to see the larger picture. He does not just jump into something, knee-jerk,” Betty said. “Most mornings he will be studying for several hours and he studies not just the Bible or theology, but psychology or history and certainly death.”

Lasting legacy

By helping residents with paperwork for food stamps, the Dottses still connect with the community around them despite living in a retirement home. They know their pain will end soon and that it doesn’t compare to the suffering others endure daily.

Ted hosts local radio show “Faith Matters” but has contributed to the community in the past as a longtime clergyman and his work as former senior vice president of ethics and faith for the Covenant Health System.

The Dottses also started the first Parents, Families and Friends of Lesbians and Gays in Lubbock in 1993.

“We started the PFLAG and that was overshadowed with fear and anxiety of persecution or vandalism or maliciousness. I don’t think that’s near as possible now, plus you have gay marriage that has passed in several states so I think it’s a movement that’s thriving and flourishing and helping people care for each other,” Ted said. “I go to sleep at night, and Betty does too, very grateful that we got involved. … People who have same-sex love and they’re persecuted over it, it can make them mean and bitter but for the most part.”

And through panel discussions at churches around Lubbock, Dotts has also shared his end-of-life decision with the community, once again bringing to the forefront a topic that may be difficult for some people to face.

Wasson said he hopes Ted’s openness inspires residents to talk about end-of-life decisions and discuss at what point it becomes about quality of life, rather than treatment to add a few months or years of battling an illness.

“In America we are a death-averse society. We don’t like to talk about death, which is why Ted’s talk the other night was so special, because he was very honest and open about death and his journey,” Wasson said. “I think this is quintessential Ted. He is great at bringing people together and talking about the tough in life and doing it with a great amount of grace and eloquence.”

Accepting death

Ted doesn’t know if he has two months left to live, or two years. But, the couple’s faith puts them at ease.

“I don’t think God even notices whether we’re dead or alive,” Betty said. “It doesn’t matter that much; we are still loved by God whether we’re here or there, and what there is, we don’t know, we haven’t been there. But, it’s our faith and that trust (that) we’re going to be cared for and loved and it’s going to be alright. It’s going to be good so I don’t have to get all uptight (about dying).”

They do have their moments of grief, but the couple mostly laughs and teases one other.

They realize this time next year, Ted may be dead, but the talks about his death have brought them closer.

“It’s like being able to see into each other’s heart and to be right with them,” said Betty, who will turn 79 in a few weeks. “He kept saying he wanted to live longer so he could take care of me when I died, but he’s dying first.”
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