Are Patients Considering Death With Dignity Getting All the Information They Need?

Last week, an Oregon cancer doctor named Kenneth Stevens told a legislative committee in Olympia about a former patient named Jeanette Hall. As he recalled it, Hall had been told she had inoperable cancer and resolved to make use of Oregon’s Death With Dignity Act. “This was very much a settled decision,” Stevens told the state Senate’s Law and Justice Committee.

It’s for the Jeanette Halls of the world, or rather of Washington state, that Stevens said he was supporting Senate Bill 5919, which would require doctors treating patients who want to avail themselves of our state’s Death With Dignity Act to inform them about possible cures and treatments. The bill, backed by critics of the original act, subsequently passed out of committee.

The bill seemed to come out of the blue, though the issue had recently garnered national attention. In November, 29-year-old Brittany Maynard ended her own life after being diagnosed with terminal brain cancer. She had actually moved to Oregon to take advantage of the country’s first death-with-dignity law and publicized her decision online—an episode that brought physician-assisted death back into the spotlight.

Maynard inspired a “massive national campaign” for death-with-dignity laws across the country, according to the website of Compassion & Choices, the national organization that supports such laws. The group says an “unprecedented 27 states,” including New York and California, are now considering legislative action. Currently only a handful of states allow physician-assisted death, including Washington, where the practice became law in 2009 after a hard-fought initiative campaign.

Yet despite that controversial campaign and the national attention, Washington’s law has quietly gone forward. The number of people using it has steadily gone up, and now surpasses those utilizing Oregon’s law. In 2013, the latest year for which information is available, 173 Washingtonians were prescribed lethal medication and 119 died after taking it, compared to 122 people who received such medication that year in Oregon and 71 who ingested it.

As in Oregon, though, such deaths in Washington represent a tiny fraction of overall mortality. And, in this state at least, there has been no hue and cry over any particular cases. But could it really be, as the bill facing our legislature now implies, that dying patients are not being told about treatments available to them?

In fact, the story of Jeanette Hall’s near-death—now circulating not only in Washington but in various states as ammunition against death-with-dignity bills—does not suggest as much. Speaking by phone from the tiny town of King City, southwest of Portland, Hall says she was told about treatment from the start. “Jeanette, the only way to beat this is through chemotherapy and radiation,” she says she was told by the doctor who first informed her that she had anal cancer that had spread to her lymph nodes.

Though only 55, she didn’t want to go through with the treatment. She explains that she kept thinking about her aunt, a onetime feisty lawyer for the federal government who underwent grueling cancer treatment and died anyway. “She was slumped over, bald. She couldn’t even talk,” Hall says, describing the last time she saw her aunt. Hall didn’t want to turn into that person.

Still, when Hall’s doctor referred her to Stevens, a cancer radiologist, she agreed. “He didn’t give up,” she says of Stevens. It’s not so much that he provided her with new information about treatment as he persuaded her, forcefully, to go through with it. “Don’t you want to see your son get married?” he asked her. “That one sentence hit home,” she recalls.

Though the treatment proved arduous, causing her to lose her hair and making eating difficult for years afterward, she says she remains grateful to Stevens for convincing her to live.

Can you legislate that kind of approach? Should you? What kinds of conversations are going on—or aren’t—around death-with-dignity laws? These are the real questions that Hall’s story raises.

Helene Starks says that Hall’s experience illustrates how complicated conversations around death and dying can be. A professor of bioethics who works for a University of Washington center devoted to palliative care, she talks about the “movies” people play in their heads related to the way they’ve seen others deal with serious illnesses in the past. These movies may date back decades—Hall’s aunt died in the ’70s—and have little bearing on what patients may go through today. “The world of cancer and treatment is changing all the time,” Starks says.

She knows something about this from personal experience. After being diagnosed with breast cancer, she says she was surprised to learn that chemotherapy would not necessarily make her throw up all the time—or, as proved to be the case, at all.

But, she says, we won’t know what people are afraid of if we don’t ask. That conversation is different than a rote “checklist” that goes through the various treatment options. It may start with questions like “Tell me about yourself? What’s important to you? Are there things in the world you feel really strongly that you want to accomplish?”

Doctors will invariably bring the conversation around to treatment, but Starks says there’s a world of difference between dryly laying out the options and saying something like “Look, lady, you should try this, really. I’m going to walk with you every step of the way. I’m not going to abandon you.” She is skeptical as to whether you can legislate this type of conversation, seeing training as a more obvious approach.

Regardless, she says, there are these open questions: “How much do we want to push people, and what do we do when we get an answer we don’t like?” She mentions a friend of hers who has leukemia. Deemed eligible for a bone-marrow transplant, she turned it down—a decision Starks says her friend’s doctor initially couldn’t understand. Her friend decided that the ongoing complications would be too onerous, and she preferred living hard as long as she could and then dying. In this case, Starks says, the doctor did ask why, and came to accept her friend’s decision.

One local institution that has a great deal of experience with conversations about mortality is the Seattle Cancer Care Alliance, which incorporates doctors from the Fred Hutchison Cancer Research Center, UW Medicine, and Seattle Children’s. Anthony Back, an Alliance oncologist who writes about the communication between patients and doctors, says a lot of people ask about the Death With Dignity Act.

“The most important thing about the conversation,” he says, is to ask “why are they thinking about it, why now?” He adds that “a lot of it is helping people think about their values.” What do they want their last days to be like? Are there things they want to wrap up?

If patients are really serious about utilizing the Death With Dignity Act, he and other doctors will refer patients to social workers at the Alliance who help patients understand their next steps. He says that many, however, just want to know there’s a way out if they need it. Even so, he says that discussion can become a doorway into broader—and in his mind more crucial—conversations about mortality.

Most people, he says, are trying to figure out how to have as natural and dignified a death as possible. In medicine right now, he says, “We don’t have a good way to have that conversation.” So many people end up in the emergency room or intensive-care unit, suffering through a lot of invasive treatment in their dying days.

Clearly some people feel strongly about taking control of their death through medication, and these people may indeed lack information—but not necessarily about possible treatment. Unlike at the Seattle Cancer Care Alliance, a number of medical facilities around the state—particularly the growing number affiliated with the Catholic Church—do not help patients utilize the Death With Dignity Act.

The law requires a patient to have two doctors fill out forms for the state Department of Health certifying that the patient is terminally ill. “It’s difficult to find providers in certain parts of Washington,” says Robb Miller, executive director of Compassion & Choices of Washington, citing southwest Washington, Bellingham, and Spokane.

He also points to something that happened at Catholic-affiliated Providence Hospice & Home Care of Snohomish County early last year. According to a complaint subsequently filed by a hospice nurse with the health department, a patient with brain cancer “made repeated requests for alternatives to end his life.” Neither his physician nor “numerous hospice clinicians” would provide any information or referrals, according to the complaint, which added that Providence nurses and social workers believed that if they discussed the Death With Dignity Act, they would be fired.

So the patient took matters into his own hands. He got into his bathtub and shot himself.

Providence spokesperson Mary Beth Walker calls the death “tragic,” but, as of press time, says she has little information about the details of the event. She says Providence “absolutely respects that patients have a right to ask” about the Death with Dignity Act. But the organization’s policy, forwarded to Seattle Weekly, says that it will not “participate in any way in assisted suicide.” And that’s likely to stand. The DOH, finding no wrongdoing, concluded that facilities are not required to provide information about the Act.

Complete Article HERE!

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.


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

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.”
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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?”
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