NPR host Diane Rehm emerges as key force in the right-to-die debate

Diane Rehm and her husband John had a pact: When the time came, they would help each other die.

John’s time came last year. He could not use his hands. He could not feed himself or bathe himself or even use the toilet. Parkinson’s had ravaged his body and exhausted his desire to live.

“I am ready to die,” he told his Maryland doctor. “Will you help me?”

The doctor said no, that assisting suicide is illegal in Maryland. Diane remembers him specifically warning her, because she is so well known as an NPR talk show host, not to help. No medication. No pillow over his head. John had only one option, the doctor said: Stop eating, stop drinking.

So that’s what he did. Ten days later, he died.

For Rehm, the inability of the dying to get legal medical help to end their lives has been a recurring topic on her show. But her husband’s slow death was a devastating episode that helped compel her to enter the contentious right-to-die debate.

“I feel the way that John had to die was just totally inexcusable,” Rehm said in a long interview in her office. “It was not right.”

More than 20 years after Jack Kevorkian jolted America with his assisted-suicide machine, Rehm is becoming one of the country’s most prominent figures in the right-to-die debate. And she’s doing so just as proponents are trying to position the issue as the country’s next big social fight, comparing it to abortion and gay marriage. The move puts Rehm in an ethically tricky but influential spot with her 2.6 million devoted and politically active listeners.

Now 78 and pondering how to manage her own death, Rehm is working with Compassion & Choices, an end-of-life organization run by Barbara Coombs Lee, a key figure in Oregon’s passage of an assisted-suicide law and a previous guest on the show. Rehm will appear on the cover of the group’s magazine this month, and she is telling John’s story at a series of small fundraising dinners with wealthy donors financing the right-to-die campaign.

If asked, she said she would testify before Congress.

Rehm’s effort comes less than a year after Brittany Maynard, a 29-year-old woman suffering from terminal brain cancer, moved to Oregon to legally end her life, giving the issue a new spin. That she was young and beautiful helped proponents broaden their argument, making the case that it is a civil right, not just an issue for graying Baby Boomers.

The Maynard case prompted a surge of activity among state lawmakers pursuing so-called death-with-dignity laws, including in Maryland, New York, Florida, Kansas, Wisconsin and the District. Progressive politicians and voters say the country is ready for the conversation.

“Kevorkian was before his time,” Rehm said. “He was too early. The country wasn’t ready.”

Public opinion on the issue depends on how it is described, according toGallup, which has found strong support for doctors helping patients end their lives “by some painless means,” but a far slimmer majority in favor “assisting the patient to commit suicide.” Not surprisingly, groups such as Compassion & Choices studiously avoid using the word suicide.

Laws granting the right to die exist in only three states — Oregon, Washington and Vermont. New legislation faces staunch opposition from religious groups and the medical establishment.

In Massachusetts and other states where legislation has failed, proponents faced well organized public campaigns from the Catholic church, whose American bishops call suicide a “grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends, and God.”

Pushback from the American Medical Association has been equally fierce, with the organization saying that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Both sides of the debate see Rehm’s entry into the debate as an important development.

“She brings gravitas, she brings her experience and she brings a level of reason and sanity to this discussion that is severely lacking when you look at the opponents of death with dignity,” said Howard Ball, a University of Vermont political scientist and author of “At Liberty to Die: The Battle for Death with Dignity in America.”

Ira Byock, a palliative care physician and vehement opponent of assisted death, has argued against the movement on Rehm’s show. Though he credits her for having him on, he said her story and influence distracts from the conversation the country should be having about improving end-of-life care.

“It sucks all of the oxygen out of the room,” he said.

‘I don’t want comfort’

They met in 1958. John was a lawyer at the State Department. Diane was a secretary.

“Physically, she was a knockout,” John wrote in a book they published about their marriage. But there was more. “It became clear, for example, that Diane had a fierce intellectual curiosity.” She never went to college, but had a copy of “Brothers Karamazov” on her desk.

Diane recalled his crew cut, his physique, his own intellectual curiosity.

“We loved taking long drives into the countryside,” Diane wrote, “and then going out for pizza and wine at Luigi’s, talking about our dreams, our fantasies, our attraction to each other.”

They wed and had two children, but marriage wasn’t as easy as falling in love. John was a loner, a workaholic. Diane was more outgoing, centered on family. They disagreed about so many things, nearly breaking up.

One thing they agreed on: Death.

“We had both promised each other we would help each other when the time came,” Diane said, “if there was some incurable or inoperable disease.”

The end of John’s battle with Parkinson’s last June was that moment. They had a meeting with his doctor. Their daughter, Jennifer Rehm, a physician in the Boston area, listened on the phone. She said, “Dad, they can make you comfortable.” Her father replied: “I don’t want comfort.”

The doctor made it clear he couldn’t help, but offered the self-starvation option, which the Supreme Court has ruled legal. John, living in an assisted-living community, didn’t immediately make the decision. The next day, Diane went to visit.

“I have not had anything to eat or drink,” he told her. “I have decided to go through with this.”

“Are you really sure?” Diane asked.

“Absolutely,” she said he told her. “I don’t want this.”

Diane stayed by his bedside. A couple days later, he went to sleep, aided by medication to alleviate pain. She read to him, held his hand, and she prayed.

“I prayed and prayed and prayed to God, asking that John not be suffering in any way as his life was ebbing,” she said.

Like his wife, John was Episcopalian, a church that has passed a resolution against assisted suicide and active euthanasia. She didn’t think God minded very much.

“I believe,” she said, “there is total acceptance in heaven for John’s decision to leave behind this earthly life.”

As John edged closer to death and the end of their 54-year marriage, a priest friend came to visit. Diane got a glass of red wine for a service of Holy Communion next to her husband’s bed. She put a drop of red wine on his lips. The priest performed last rites.

She spent the night with him, and in the morning she went home for a quick shower. Then she received a call — come fast, he’s slipping away. She missed his death by 20 minutes. She is still angry about that. If he could have planned his death, she and his family would have been there.

“That’s all I keep thinking about,” she said. “Why can’t we make this more peaceful and humane?”

John donated his body to George Washington Medical School. At his memorial service, some 400 people packed St. Patrick’s Episcopal Church — journalists, academics, policy makers and religious figures, including Marianne Budde, bishop of the Washington Episcopal Diocese.

Diane returned to work not long after. She told her producers she wanted to do another show on assisted dying.

It wasn’t until the last few minutes that Rehm told listeners what her husband had done: “John took the extraordinarily courageous route of saying, ‘I will no longer drink. I will no longer eat.’ And he died in 10 days.”

Richard from Florida called in. “You have my deepest sympathies and empathies with the loss of your husband,” he said. And then: “I’ve got to get to the state that gives me the choice.”

Rehm said she knows that as a journalist, she must be careful.

“As strongly as I feel, I don’t want to use the program to proselytize my feelings,” she said. “But I do want to have more and more discussion about it because I feel it’s so important.”

Sandra Pinkard, Rehm’s producer, said she appeals to listeners, in part, because she is so open about herself. She and John discussed their marriage on the air. She detailed his struggles with Parkinson’s.

Rehm came back to the assisted death topic in late October after Brittany Maynard announced plans to end her life.

Byock joined her on the show, knowing, he said, that “on this issue, she is clearly an advocate.” Though she didn’t mention her husband, he said he had to be “very assertive” to counter the focus on Maynard’s undeniably dramatic case.

Still, he said he would go back on the program “in a heartbeat” because it’s becoming a forum for the debate.

“It’s people like her listeners that I want to talk to,” he said. “I am sincerely grateful for giving me access to her listeners.”

Her last moments

They still talk, Diane and John.

“I miss you so much,” she’ll say out loud, alone in her apartment. When President Obama awarded her the National Humanities Medal last year, she told John, “It just breaks my heart you weren’t there.”

She could hear his voice: “Don’t worry, I’m there.”

Wherever he is, Rehm has plans to join him. But she doesn’t intend to die the way he did. Shortly after John’s funeral, Rehm made an appointment with her doctor to talk about her death.

“You have to promise,” Rehm told the doctor, “that you’ll help me.”

The doctor, Rehm said, was “receptive” to the request. “I think over a period of time he or she would provide me, if I were really sick, with the necessary means,” she said.

Rehm can’t fathom being in the “position where someone has to take care of me. God forbid I should have a stroke, I want to be left at home so I can manage to end my own life somehow. That’s how strongly I believe.”

Like John, she is donating her body to GW medical school. Once students finish learning from her remains, her family will take her ashes to the family’s farm in Pennsylvania, spreading them near the same hickory tree that shades John’s ashes.

Rehm can vividly see her last moments. She is in her bed, at her home, unafraid.

“My family, my dearest friends would be with me holding my hand,” she said. “I would have them all around me. And I would go to sleep.”

Complete Article HERE!

If You Have Dementia, Can You Hasten Death As You Wished?

By Robin Marantz Henig

If you make a choice to hasten your own death, it’s actually pretty simple: don’t eat or drink for a week. But if you have Alzheimer’s disease, acting on even that straightforward choice can become ethically and legally fraught.

Dementia

But choosing an end game is all but impossible if you’re headed toward dementia and you wait too long. Say you issue instructions, while still competent, to stop eating and drinking when you reach the point beyond which you wouldn’t want to live. Once you reach that point — when you can’t recognize your children, say, or when you need diapers, or can’t feed yourself, or whatever your own personal definition of intolerable might be — it might already be too late; you are no longer on your own.

If you’re to stop eating and drinking, you can do so only if other people step in, either by actively withholding food from you or by reminding you that while you might feel hungry or thirsty, you had once resolved that you wouldn’t want to keep living like this anymore.

And once other people are involved, it can get tricky. Caregivers might think of spoon-feeding as just basic personal care, and they might resist if they’re asked to stop doing it — especially if the patient indicates hunger somehow, like by opening her mouth when she’s fed.

Conflicts between caregivers and the patient’s previously stated wishes can end up in court, as with the case of Margaret Bentley, which goes before the Court of Appeals in British Columbia on Wednesday.

Bentley, a former registered nurse, decided years ago that she wanted to stop eating if she ever became completely disabled. But she has now sunk so far into dementia that she needs other people to help her carry out her own wishes. And while her family wants her to be allowed to die, the administrators of her nursing home do not.

Back in 1991, Bentley wrote and signed a living will that said that if she were to suffer “extreme mental or physical disability” with no expectation of recovery, she wanted no heroic measures or resuscitation, nor did she want to be fed “nourishment or liquids,” even if that meant she would die.

Eight years later, at the age of 68, Bentley was diagnosed with Alzheimer’s disease. She lived at home with her husband John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.

For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.

By this time it was 2011, and Bentley was living at a second nursing home, Maplewood House, in Abbottsford, about an hour east of Vancouver. Aides had to do everything for her, including diapering, moving, lifting and feeding her. So the decision to stop giving her food and water involved the aides as well as the Fraser Health Authority, which administers Maplewood House.

Someone — Hammond is not sure exactly who — resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.

That’s just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. “There she goes again,” the daughter says on the video.

In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentley’s desire to be fed; he granted the nursing home permission to continue to spoon-feed her. Bentley’s family appealed, resulting in Wednesday’s court hearing.

Death brought about by the cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly. Most of the discomfort associated with it, according to a pamphlet issued by the advocacy group Compassion & Choices, comes from trying to do it in increments. Even a tiny amount of food or water “triggers cramps as the body craves more fuel,” the group writes. “Eliminating all food and fluid actually prevents this from happening.”

They recommend lip balm and oral spray if the mouth gets dry, rather than sips of water that can introduce just enough fluid into the system to make the process harder. And they counsel patience. It takes about six days, on average, for someone who stops eating and drinking to slip into a coma, and anywhere from one to three weeks to die.

Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia. (NPR earlier covered the story of Sandy Bem, a woman with Alzheimer’s who took matters into her own hands before that final stage.)

In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.

Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve — she was, after all, suffering from a disease characterized by profound memory loss — and would ask for food. When she did, her family reminded her of her previous decision.

But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?

That’s the problem, really; part of what happens in a dementing illness is that the essential nature of the individual shifts.

“Mrs. F.’s husband was, to all appearances, acting out of goodwill in an attempt to honor his wife’s previously expressed wishes,” noted Timothy W. Kirk, an assistant professor of philosophy at the City University of New York, in his commentary on the case. “Doing so in a manner that conflicted with her current wishes, however, was a distortion of respecting her autonomy.” Kirk’s bottom line: If this Mrs. F., the one with the new, simpler identity, asks for food, she should get it.

As hard as it is to resolve moral quandaries like these, one thing is clear: they’ll be raised again and again, as the population ages and cases of late-life dementia soar.
Complete Article HERE!

Dying on your own terms: A physician’s advice for a better death

By Peter Whoriskey

In a new book, “The Conversation”, physician Angelo E. Volandes argues that the the U.S. healthcare system is failing patients in their final acts: Americans are botching death.

The problem is that hospitals and doctors are pre-programmed to “do everything” for dying patients – that is, attempt every last measure to prolong life, even if its probably futile, painful and unwanted.

To a certain kind of Washington policy wonk, the trouble with “doing everything” is that it causes soaring medical costs and billion-dollar financial woes.

But those are not the concerns of Volandes, a Harvard researcher who practices as a hospitalist. Instead, he sees the extreme end-of-life measures as a tragedy for patients – a tragedy that could be prevented if only doctors asked patients what they want. The patients are the ones who must bid farewell to life being poked and prodded and filled with tubes by strangers in the hospital.

The tone of the book, which is told through a series of patient vignettes, is polite. In a recent conversation, Volandes sounds considerably angrier about the failings of the system.

Angelo E. Volandes

Peter Whoriskey: To get patients like her to realize what “doing everything” means, you started taking patients on tours of the intensive care unit to see what dying in the hospital looks like – the tubes and so on. When that became impractical – it was against hospital rules – you even made a video.

Angelo E. Volandes: I want patients to understand what “doing everything” means. I’ve since heard from other doctors who’ve done the same thing. People just don’t know what it’s like in there. As doctors, we sometimes say to one another, “Would anyone want this? We are torturing these patients.” But patients don’t know.

I wrote the book because… I want people to be outraged. I want people to understand what’s happening behind those hospital doors. This is not a patient-centered healthcare system.

Whoriskey: You talk in the book about being, early in your career, one of those doctors who couldn’t squarely talk to patients about death, and in the case of one brain tumor patient, being unable to say directly that she had terminal cancer and was dying.

Volandes: We weren’t trained to talk to patients. I was actually sweating. I’ll never forget her look. She was a highly educated professor and she had this blank stare. It will stay with me the rest of my life.

Whoriskey: One of the patients you talk about, as a warning, is an old coal miner who despite being very near death was saddled with “eight plastic intrusions”: a tube into his lungs, two intravenous lines, an arterial line, a stomach tube, a tube in his heart to drain fluid, one for his bladder and one for his rectum. How often do patients die like that – is it really that common when they are about to die anyway?

Volandes: He’s not unusual. If we haven’t had a conversation with a patient about what they want, it’s automatically a full court press. All of those intrusions are commonly used. None of them is extraordinary.

Whoriskey: What is most common measure applied to patients who are near death that ought to be reconsidered?

Volandes: Feeding tubes. That is probably the number one kind of avoidable care. We know from many studies on patients with advanced dementia, feeding tubes are not helpful. Yet what do we see in nursing homes? Patients tethered to feeding tubes. The alternative is hand-feeding.

Whoriskey: The solution you propose is simple: Have a conversation. Ask patients what they want. Is it really just the lack of conversation that has most of us dying in hospitals and nursing homes when we really prefer to die at home?

Volandes: That’s what I see as a practitioner. I know that when we do slow down to talk to patients, people tend to choose the care that is right for them. Most of the time today we’re not even stopping to have the conversation.

Yes, the default is to do everything because that’s what we as doctors are trained to do and that’s what hospitals are there for, and there are financial incentives behind that. But if we slow down and talk to patients, it can work.

Complete Article HERE!

The Fallacy of ‘Giving Up’

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

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.

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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.

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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.

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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.

(Shutterstock)

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.

(Shutterstock)

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.
Complete Article HERE!