01/9/18

This Was Not the Good Death We Were Promised

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When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

Complete Article HERE!

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01/8/18

Assisted dying in religious facilities means tough choices for families

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Barry Hyman always swore he’d die peacefully on his own terms. But living in a faith-based nursing home put his family in a difficult position to help him

Lola Hyman and her son Jackson look over photographs of Lola’s father Barry Hyman at their home in Vancouver.

By

On the night that 83-year-old Barry Hyman was to receive a doctor-assisted death, his daughters were on edge, petrified that at any moment someone would burst through the door and stop them from granting their father his final wish.

Enfeebled by a stroke and diagnosed with lung cancer, Mr. Hyman had asked to die at home.

But his home at the time was a publicly funded Jewish nursing home in Vancouver whose board forbade assisted deaths on site, saying the newly legal practice violated the values and traditions of the Jewish faith.

That left Lola Hyman, the younger of Mr. Hyman’s two daughters and his main caregiver, with a choice.

She could transfer her father to an unfamiliar clinic to die, or she could sneak Ellen Wiebe, one of the country’s leading doctor-advocates of assisted dying, into her father’s room to help him die in his own bed.

Lola and the rest of her immediate family settled on the latter. They would deal with the fallout later.

Their first priority was making sure that Mr. Hyman died peacefully on his own terms, as he’d always sworn he would.

“The room was very quiet. We just held his hand and stared at him,” Lola said. “My sister was sobbing, just sobbing. I was a stone. A complete stone. My heart was racing that someone would open the door.”

nstead of focusing on their goodbyes, the Hyman family spent the last moments of Barry’s life worrying that they would be discovered and prevented from completing a legal medical procedure inside a publicly funded care facility.

Their story is an extreme example of the choices that grievously ill Canadians still face – 18 months after Ottawa’s assisted-dying law took effect – if they wind up near the end of their lives in a hospital or nursing home that refuses to allow assisted dying, either for religious reasons, or because the facility has simply decided to say no.

It is not clear if these institutions enjoy the same Charter-protected religious freedoms as individuals when it comes to refusing assisted deaths because the issue has not yet been tested in court.

In the vast majority of cases, such patients are transferred to another facility to die. But it isn’t always easy to find a place to send them.

Sometimes overcrowded secular hospitals say no. Sometimes the only hospital or nursing home in town is faith-based.

Other times, an unconventional location has to suffice: In Vancouver, Dr. Wiebe has opened her women’s health clinic after-hours for 34 assisted deaths, which means that in some cases, Catholic health-care facilities have transferred patients to an abortion clinic to die.

Canada’s religious health-care organizations, which have been tending to the sick in this country since long before Medicare, say they are doing their best to support terminally ill patients without betraying their own faith, offering options like palliative sedation to make patients’ natural deaths as painless as possible.

Some have softened their objections to the early parts of the medical-aid-in-dying process, allowing outside doctors to come in and conduct eligibility assessments on patients who are too fragile to be transferred for an appointment.

But when it comes to actual physician-assisted deaths, religious facilities – be they Jewish, Baptist, Catholic or otherwise – are refusing to allow the practice on their grounds.

“The core issue … is that Catholic and faith-based organizations are committed to the inherent dignity of every human life and would never intentionally hasten the end of a life,” said Christopher De Bono, vice-president of mission, ethics, spirituality and indigenous wellness at Providence Health Care, a Catholic health-care network that includes St. Paul’s Hospital in downtown Vancouver.

Nobody on either side of Canada’s assisted-dying divide is arguing that individual doctors or nurses should have to participate in assisted dying if they object to it, said Shanaaz Gokool, the chief executive officer of the advocacy group Dying with Dignity Canada.

But she is incensed that every province with faith-based health-care organizations except Quebec has allowed taxpayer-funded hospitals and nursing homes to refuse requests for a procedure the Supreme Court of Canada has declared a Charter-protected right. (And even Quebec allows some hospices to opt out.)

“Why are we making this so hard for people when it’s the one medical treatment that you have a legal right to in this country?” she said.

Throughout Barry Hyman’s long and colourful life – through founding a small publishing company, raising two daughters, divorcing twice, studying history and English literature at Simon Fraser University as a senior citizen and logging countless hours at casino poker tables – he told anyone who would listen that he had no desire to linger if his health failed.

“Ever since I can remember, and I mean over 50 years, my father has always told me that if he ever got to the point that he no longer had the ability to comprehend, the ability to socialize, the ability to do the things that he wanted to do … he was done,” said Leah Hyman, 54, Mr. Hyman’s eldest daughter.

Mr. Hyman, a Winnipeg-born businessman, dreaded one day losing the vitality that infused his life, first as a young waiter on the railroad, then as the founder of an Edmonton printing company that churned out small Jewish newspapers and government directories.

He also owned pool halls, nightclubs and a roller rink. He was still on J-date, the online Jewish matchmaking service, in his 80s.

“He just rolled up his sleeves and dove into everything,” Lola said – including introducing his only grandson, Jackson Doyle-Hyman, now 19, to the worlds of business and (responsible) gambling.

Mr. Hyman once took a kindergarten-aged Jackson to the track and showed him how to bet $10 at a time on the top horses.

Lola, now 51, later found cash spilling out of the pockets of Jackson’s little navy polo jacket.

As he grew older, Jackson often tagged along to business meetings where ad space was traded for car parts or hotel stays, a practice called “contra.”

Barry Hyman holds his grandson, Jackson, in 1998.

“We always joked that he could have built a Ferrari with all the car parts he got contra for,” Jackson said.

Mr. Hyman was already a diabetic with congestive heart failure when he was diagnosed with lung cancer early in 2016.

But his health didn’t really begin to deteriorate until an ill-fated trip to a tanning salon to treat his psoriasis.

The tanning bed left Mr. Hyman with a burn on his left foot no bigger than a quarter. The wound festered for nearly a year, despite every effort to heal it.

By October of 2016, doctors were talking about amputating his leg. Mr. Hyman instead chose to undergo a procedure in which surgeons bypassed a clogged leg artery that was keeping his foot from healing.

Ten days later he had a stroke, a known risk of the operation.

His mind was still sharp, but the stroke impaired his speech – a devastating blow for a man who adored the English language and insisted upon its correct use.

“This was a guy who read two papers a day and did the New York Times crossword,” Lola said, “And he no longer could do any of that.”

It was clear to Lola that her father could not keep living in his own apartment, as he had before the stroke.

The family’s first choice was the Louis Brier Home and Hospital, Vancouver’s only Jewish nursing home. But it was full.

Mr. Hyman during a portaging trip through the Northwest Territories in 1985.

Reluctantly, Mr. Hyman accepted a spot at St. Vincent’s: Brock Fahrni, a Catholic home where he shared a room with three other men.

Mr. Hyman and his family made a preliminary inquiry about assisted death with a doctor there, but it went nowhere.

When, in April of 2017, a bed in a private room became available at the Louis Brier Home, Lola leaped at the chance.

She knew that, like the Catholic home her father would be leaving, the Louis Brier did not permit assisted deaths on site.

She hoped that moving her father to a nicer place where he could live among his Jewish peers and Jewish culture would persuade him to abandon his talk of assisted death.

But Mr. Hyman wouldn’t let go of the idea. Although Lola didn’t want to lose her father, she was willing to help him fulfill his final wish.

On April 26, a week after moving to the Louis Brier, Mr. Hyman and Lola met Dr. Wiebe at her office.

A few hours later, Dr. Wiebe e-mailed Lola to say her father’s constellation of health problems made him eligible for an assisted death.

Dr. Ellen Wiebe sits in the room where she helps those wanting medically assisted deaths at the Willow Women’s Clinic in Vancouver.

When the Supreme Court of Canada struck down the Criminal Code prohibition on physician-assisted dying in February of 2015, the judgment made it clear that invalidating the law would not compel doctors to help their patients die.

The court was silent, however, on whether entire health-care organizations could bow out of medical aid in dying.

Parliament passed a law that was silent on the question, too, even though a special joint committee of the House and Senate had recommended that Ottawa work with the provinces to ensure all publicly funded health-care facilities provide medical assistance in dying.

Jay Aubrey, a lawyer with the British Columbia Civil Liberties Association, the group that helped topple the ban on assisted dying, predicted that a legal challenge against an objecting religious health-care facility such as the Louis Brier Home would be straightforward.

The home is 67-per-cent publicly funded and is therefore “acting in the shoes of government,” she said. “That’s why they’re bound by the Constitution.”

Ms. Aubrey sent a letter to the Louis Brier Home last May making that case on Mr. Hyman’s behalf.

But Richard Moon, a University of Windsor law professor and an expert in religious-freedom cases, said past precedents suggest public funding alone is not enough to saddle a third-party like a nursing-home operator with the constitutional duties of a government.

On the contrary, he said, religious health-care organizations could try – and might succeed, under the right circumstances – to claim they are entitled to the same Charter-protected religious freedoms as individuals, allowing them to rebuff government orders that breach their beliefs.

Prof. Moon said there could be a simple way around that: Provincial governments could withhold funding from health-care organizations that do not allow assisted dying, so long as they applied the rule without discrimination.

“It’s a matter of nerve here, isn’t it?” he said. “Is the government really willing to withdraw funding from these organizations? Are these organizations really willing to risk the loss of funding?”

So far, everywhere outside Quebec, the answer is no.

Grievously ill patients are instead being transferred out of non-participating institutions in numbers that are difficult to determine at a national level.

British Columbia’s five regional health authorities together logged a total of 61 transfers as of the beginning of December. Alberta has recorded 42; Saskatchewan is aware of at least 11; Manitoba has recorded eight.

The Maritime provinces say they are either not aware of any such transfers or are not tracking them.

The outlier is Ontario. Not only has Kathleen Wynne’s government declined to track transfers, it passed a law exempting hospitals, nursing homes and hospices from freedom-of-information requests about medical aid in dying, a move the province’s privacy commissioner denounced.

The blackout, which a spokesman for Ontario’s Ministry of Health and Long-Term Care said was enacted to protect health-care workers and institutions that provide assisted dying, makes it impossible to say how many hospitals in Canada’s most populous province are refusing to allow the practice.

But ministry officials have hazarded a guess: As many as 27 publicly funded Ontario hospitals – one out of every five in the province – would “potentially object to [medical aid in dying] based on their stated religious/ideological values,” according to an internal briefing note that Dying with Dignity obtained through a freedom-of-information request.

“There are 7 cities/towns in Ontario with potentially objecting hospitals that have no alternative hospitals within 100 km. Moreover, there are 4 other cities/towns with only one neutral hospital for the whole region.”

In Vancouver, when patients are looking for an alternative location to receive an assisted death, one option is Dr. Wiebe’s Willow Women’s Clinic on the 10th floor of a downtown high-rise.

The space has much to recommend it, according to Dr. Wiebe: wheelchair access, a separate waiting room for family and, in the larger of the two rooms she reconfigures for assisted deaths, a spectacular view of the mountains.

Still, there’s a makeshift feel to the arrangement. Patients take their last breaths on a bedsheet-draped patio recliner, the same piece of furniture on which the clinic’s regular clients recover after having an intrauterine device inserted.

In one “dreadful” case, a man who wanted to die without his family present was transferred from a Catholic facility and mistakenly left outside by a medical transportation service, next to the pounding of jackhammers, Dr. Wiebe said.

“We need to get to [the government] and say, ‘This is completely unreasonable – you can change it with the stroke of a pen,'” Dr. Wiebe said of the B.C. NDP’s decision to continue allowing publicly funded faith-based institutions to opt out of assisted dying.

B.C. Health Minister Adrian Dix declined an interview request for this story.

A spokeswoman for the Ministry of Health emphasized that all of the regional health authorities in B.C. have care co-ordination services that help smooth the transition for patients who have to move from one place to another for an assisted death.

She said the provincial government has “no plans to terminate” a long-standing agreement that allows members of a group called the Denominational Health Association (DHA) to refuse to provide services that are inconsistent with their religious values.

The DHA represents 44 health-care facilities in B.C., including the Louis Brier Home, where Barry Hyman wanted to die.


The entrance to the Jewish faith-based Louis Brier Home and Hospital in Vancouver.

A few weeks after meeting Dr. Wiebe, Lola Hyman e-mailed David Keselman, the chief executive officer of the Louis Brier Home, to formally ask that her father be allowed to die on site, despite the home’s policy.

Mr. Keselman sent his formal reply to Lola on May 25. “Quite some time ago,” he wrote, “the governing board, along with the leadership of Louis Brier, decided that Louis Brier will provide care and services to the residents according to the Orthodox Jewish stream.”

The home was willing to allow eligibility assessments, he continued, but not assisted death itself.

“Lola I realize that this may not be what you would have liked or have wanted to hear,” Mr. Keselman wrote. “If so I regret this.”

For weeks afterward, Lola weighed her options. She didn’t like the idea of sending her father to die at Dr. Wiebe’s office or an unfamiliar seniors’ home suggested by the care co-ordination service at Vancouver Coastal Health.

“The thought of doing my father’s provision in a clinical setting [with a bed] that looked like a dentist’s chair was so unsettling for me,” she said. “I didn’t share it with my father. I did not burden him with any of the logistics. I just said, ‘When you want it to happen, Dad, it will happen.'”

Mr. Hyman ultimately decided to die on June 29.

Leah and her wife, Tori, drove up from their home in Oregon that day to be with Lola and Jackson in Mr. Hyman’s room.

Early in the evening, Lola went to the front door of the nursing home to welcome Dr. Wiebe and a nurse as though they were old friends paying a visit.

They hid their medical equipment and lethal drugs in oversized bags.

Dr. Wiebe, her nurse and Lola went in to Mr. Hyman’s room and shut the door. Leah, Tori and Jackson stood guard outside.

When a nurse from the home came by to try to give Mr. Hyman his regular medications, Leah offered to deliver the pills, shooing the nurse away with a forced joke or two as though she were not minutes away from watching her father die.

“It was rough,” she recalled, crying. “I was not the best daughter. We just didn’t communicate well. We loved each other and we knew each other and we were there for each other. But this was the one thing I was going to make sure that we did, that we followed through on. He was going to go the way that he wanted to go.”

When Dr. Wiebe was ready to begin injecting the medications, Leah, Tori and Jackson came in and joined Lola at Mr. Hyman’s bedside.

He died peacefully in about 10 minutes that felt much longer to his family. “I’ll never forget looking at the door all the time,” Leah said, “terrified that someone was going to come in.”

In the end, nobody interrupted Mr. Hyman’s death. Dr. Wiebe filled out the death certificate, gave it to Lola, and left.

About 20 minutes later, Lola approached the home’s nursing station and did something she instantly regretted: She told them her father had died, but didn’t say how.

“I was frozen,” she said. “If I could go back, I would have walked up to that nursing station and said, ‘Dad passed of [medical aid in dying],’ but I can’t imagine what I would have been bombarded with as Dr. Wiebe was getting into her car.”

The next morning, after Dr. Wiebe reported the details of the case to Vancouver Coastal Health, Lola sent the Louis Brier Home a copy of Mr. Hyman’s death certificate.

The aftermath of Mr. Hyman’s death was hard on the home’s staff, especially the front-line workers who were initially puzzled by his unexpected death, Mr. Keselman said.

“We had no opportunity to communicate with the staff, to prepare them, to explain anything,” he said. “It was very traumatic.”

Mark Rozenberg, the chair of the ethics committee of Louis Brier’s board, emphasized that the home makes no secret of its opposition to assisted dying.

“Anyone who comes here knows what our policy is,” he said. “And if they don’t like the policy, they should go somewhere else.”

The home has since filed a formal complaint against Dr. Wiebe with the College of Physicians and Surgeons of British Columbia, the regulator for doctors in the province.

The complaint does not faze Dr. Wiebe; she is confident the college will see she was fulfilling her patient’s wish to die at home. (A college spokeswoman declined to comment.)

But Lola is heartsick at the thought of Dr. Wiebe in trouble, just as she is heartsick about having upset the front-line staff at Louis Brier.

None of this – including the stress her family experienced on the evening of Mr. Hyman’s death – would have happened if the government compelled all publicly funded health-care facilities to allow assisted dying, Lola said.

“Everyone is entitled to their religious beliefs and traditions and customs,” she said. “But when it comes to somebody who is very sick and dying, we need to have a different approach.”

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01/3/18

‘There will be an afterwards’: how a mother prepared her sons for her death

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When Kate Gross was dying, aged 36, she told her sons there would be life after her death. But how would they actually cope with losing her?

‘Afterwards, you will need to …’ Kate Gross with her twin sons Isaac, left, and Oscar

By Jean Gross
When my grandson Isaac was very small, his mother, Kate, would say, “I’ll miss you” when she travelled away for work. Later, when he was three, I remember him running after her in the park when he couldn’t quite keep up with her, crying: “Don’t miss me, Mummy.” To him, “to miss” meant “to leave”. “Don’t miss me, Mummy”, meant don’t leave me.

But, in the end, Kate did have to leave him, and his twin brother, Oscar. When the boys were five and she was 36, she died. It was Christmas Day 2014, minutes before the boys woke up to ask their dad, Billy, if it was time to open their stockings.

In the months before Christmas, once Kate had been told her cancer was terminal, she came up with a way in which we could all talk about a future without her. She called it Afterwards. “Afterwards,” she would say “you will need to …”, “Afterwards, Billy will …” Now, with some distance between us and that worst of Christmases, I want to write about Oscar and Isaac’s Afterwards – how they have managed, and whether Kate’s fears for them, or her best hopes, have come true.

It is a positive story. The boys are now sturdy, happy eight-year-olds. We have learned, with surprise and relief, how resilient they are, and how easily they have taken to the fact that their mum is not here – and yet is still here, in the fabric of her house, in the memories, in the ways in which we constantly tell them they resemble her.

Initially, the boys each reacted very differently to their loss. Oscar is stoic and factual by nature, with a passion for numbers. When we told the boys their mum was going to die, he asked how old people were when they got cancer. Billy said it was usually when you were old; their mum was unlucky.

“How old is Mum?” asked Oscar.

“Thirty-six,” said Billy.

Then, “And how old are you, Dad?”

Oscar was working it all out, with numbers as his guide, and Billy knew to tell him that he wasn’t likely to get cancer, too.

Of the two boys, Isaac has always been a little more worried about love and loss, always at a different point on the objects-facts v people-feelings scale. After Kate died, he initially had more hurt places than Oscar – manifest in tummyaches at school and a wish to stay in and “help” his kind teacher, or occasional oblique insights into sadness. I remember being in the car taking the boys to change from school clothes into smart new jumpers and shirts for Kate’s funeral. I told them that some people might cry at the funeral. “Why?” asked Isaac. It’s just something grownups do, I said. “Why?” persisted Isaac. I said they would be sad because they missed Mummy. There was a pause, then Isaac said: “I had a dream.” I asked what his dream was about. “I was on a train and Dad wasn’t and the train went off without him.”

But apart from these brief moments, there has been little sign of grief or worry. Oscar likes to tell me his bad news, like a cat bringing a mouse it has caught and tenderly laying it on your pillow. Once told, it becomes less important. But the bad news has never been about Kate, only grazed knees, fluffing a save in football, missing his computer time at school. Her death did, however, offend his sense of justice. “It’s not fair,” he said when we first told him she would die soon. “The other children in my class will have mummies.”

Kate and her mother, Jean Gross, with Isaac, left, and Oscar

Grieving, I think, asks that you live in the remembered past or a denuded future. Oscar and Isaac still pretty much live in the present. Nor have they a great capacity for introspection. Once I told them they had been unlucky to lose their mum. “Why?” asked Isaac. They didn’t understand; they were unable to examine their experiences, as distinct from simply living them.

There is little point in expecting young children to be sentimental. The summer after Kate died, we were on holiday in France, visiting a church; the boys saw candles and asked if they could light some. For Mummy, we said, and thought of her. But for them what mattered were the immediate sensory experiences – the physical act of striking a match, and the satisfying clunk as the offering money fell to the bottom of the collection box. Things don’t stand for things when you are small. They simply are.

I have often wondered why is it that some children cope with adversity, while others falter and fall. Research tells us that resilience is linked to social support – a sense of belonging to a community, and having at least one adult in your life who believes in you as a worthwhile person. And they have social supports in abundance – Billy, their dad, of course, and all the family and Kate and Billy’s friends. Just as important has been the boys’ own social circle. The children at their small, loving, Catholic school, and their parents, have closed around Oscar and Isaac and created a force field that keeps the Dark Side well away.

Science has been helpful to the boys, too; their dad is, after all, a scientist. They wanted, and got, proper explanations about cancer cells and death. A few months after Kate died, we heard them chatting in bed: “Everything dies eventually,” said Oscar.

“No one lives to infinity,” said Isaac.

Religion, doled out at school, has given the boys a language in which to talk about their loss. People often told them that their mum was in heaven, and they accepted this. In one bathtime discussion, Oscar told me: “There must be heaven.”

“Why?” I asked.

“Because if there wasn’t, where would God live?” he said triumphantly.

Even so, you have to be careful. One of Kate’s friends, whose wife died when his three girls were small, told us that one of them had said she wanted to be run over by a bus, “so I can go to heaven and be with Mummy”. As for, “God took your mummy because he wanted her to be with him in heaven,” I can’t think of anything more likely to make a child seriously annoyed with such a selfish higher power.

Angels are safer territory. At a birthday party, when the children were colouring in angels, Isaac said: “My mum’s an angel.” Oscar agreed: “Yes, she is.” But the angel for the top of the Christmas tree got broken last year and this year we had to get a star instead. I wondered if the boys were confused, what with these broken and unbroken angels. How do children make sense of all this? And how do they reconcile science and belief?

Becoming older and growing in understanding, the boys have talked recently with their dad about this. “It’s belief until it’s proved and then it’s science,” the boys told me.

“So what about angels,” I asked.

“They must be belief ’cos you can’t see them flying round, can you,” Isaac replied.

It is hard to know exactly what the boys do remember about Kate. We try to help by talking about her, whenever we can. Many people have told us how important it is to keep the person who has died in the conversation. A kind stranger, for example, wrote to us: “Both my parents died of cancer. I’m sorry for your loss. PLEASE tell stories about your Kate to your lovely grandsons. We stopped talking about our mother when she died – it was a black space that became hard to fill.”

Sometimes, I hold Kate up as an example for the boys to live up to. When they were complaining about having to keep going back over pieces of writing at school, to “improve” them, I told them that when their mum was writing a book, she had an editor who suggested changes to words and things to move around. I told them how hard she worked to make those changes. “And did she have a rubber?” asked Isaac, concerned.

We had a letter from a woman who lost her own mother as a child. She wrote: “My middle sister and myself had funny little memories of my mum and it truly wasn’t until I had my first child that I recall missing her.” Perhaps that will happen to Oscar and Isaac; I expect they will circle round the idea of Kate’s death and come to it at unexpected moments in unexpected ways. Maybe some later loss will take them back to how it felt in childhood. Or maybe, in a few years, the loss of a mother will simply give them a convenient hook on which to hang their inevitable non-specific teenage angst.

I hope they will be OK, long-term. But right now it is clear to me that they are not diminished by Kate’s absence, unlike us – my husband and I – who are. And if Kate could come back, just for a moment, I would tell her that she need not have been afraid. Oscar and Isaac are fine, just fine.

Complete Article HERE!

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12/26/17

Why you should make end-of-life care decisions now

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By Kristen McConnell

Modern medicine has developed the God-like power to stabilize the vital signs that spiral out of control as a person approaches death, and to then keep that person alive despite their inability to breathe, eat or drink. It wields this power liberally.

But the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life.

As an ICU nurse, I am haunted by memories of patients who were stabilized in intensive care so that their catastrophic injuries or diseases did not kill them, but who were left unable to communicate or do anything but receive medical care.

I think of a young woman whose family was so torn apart over whether to take her off life support after a hemorrhagic stroke left her comatose that by the time she died of a complication, weeks later, nobody came to be by her side.

When she was first admitted to the hospital, her family crowded her room. But when she didn’t get better, they drifted away. She stayed, her flesh peachy after weeks of tube feeding, though speckled with the tiny bruises of blood-thinning heparin shots.

She died of a perforated bowel leaking fecal matter into her abdomen and causing sepsis. Her family had declined emergency surgery over the telephone, giving permission for her to die. At the very end, there was only a nurse, dialing up morphine as the patient’s organs failed.

I can only imagine the immense suffering her family endured, and I know that every time they were asked for a decision regarding her care, they tried to make the right one.

But I wonder: If what was left of the girl in the hospital wasn’t enough to come say goodbye to, if she was too far gone to hold hands with as she drew her last breaths, why was she still there?

I also think of an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke. He was already completely immobile, dependent on care and unable to communicate. His breathing was inadequate and his heart went into a dangerous rhythm — dangerous if the goal is to stay alive. He was intubated and taken to the ICU.

The poor man was awake. He would occasionally squeeze a hand when asked to, but he never responded to questions. Because there was no fear of him pulling out his breathing tube, he was on minimal sedation, getting drugs only when he breathed rapidly or started “bugging out his eyes,” as one nurse put it. Aside from a list of diagnoses and meds, there was little information in his history, and no family contacts.

When asked directly by the ICU, the patient’s case manager and his general physician both refused to serve as his proxy and would not participate in a conversation about whether the patient would rather switch from life-sustaining measures to “comfort care,” which would have meant removing the plastic tube from his trachea and allowing him to die naturally, with supportive care and medicine to make him comfortable. So we kept him alive.

When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.

When I stick a needle into his arm, or a catheter into his urethra, it feels as though I am kicking a homeless person. The incapacitated ill are profoundly disenfranchised, and the manipulation of their bodies is extraordinarily invasive and consequential.

It’s a moral crisis hiding in plain sight, yet the people involved claim to be mere cogs in the machine. When I asked an ICU attending physician why families aren’t given data and clear explanations of probable outcomes rather than best-case scenarios and “only time will tell” conversations, he said, “palliative care people can do that. In the ICU, we don’t really have time.” Another physician mentioned the “inertia of the system.”

It falls to the general public — the patients — to take the initiative in reforming the excesses of modern medical care.

You can determine your fate by completing an advance directive. This is a legal document in which you can explain what measures should be undertaken if you are unable to communicate; name a healthcare proxy who can communicate your wishes to medical providers; and lay out how you envision the end of your life.

Medicare began reimbursing physicians for advanced care planning in 2016. And many states have adopted POLST programs — Physician Orders for Life Sustaining Treatment — in which medical orders can be written in advance. Still, two-thirds of Americans do not have any type of advance directive in place.

These documents are critically important. If you don’t want to be kept alive on life support, you can indicate as much in your advance directive. If you want the longest life possible no matter what, you can affirm this wish. Either way, families and care providers should know. It will help move our medical system toward a more humane approach to end-of-life care.

Complete Article HERE!

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12/23/17

‘It’s all about making this better’

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In the season of giving, hospice grants patients’ end-of-life wishes

From left, Deborah Holmes, Leslie White and Lisa Price work with patients of all ages at Seasons Hospice. Their job is to provide comfort and love to a person in his or her last days, weeks and even months.

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Deborah Holmes adjusted her glasses, eyes watering as she glanced up at the ceiling of Seasons Hospice’s family room.

“I’m glad I didn’t wear mascara again today, though none of us [nurses] do much because we cry so often,” she said, smiling as her voice cracked. “I’ve almost given up wearing glasses they fog up so much too.”

Steadying her voice, Holmes laughed — a mixture of sadness, humor and joy.

Though the holiday season is often thought of as an especially important time for giving and making wishes come true, for Holmes and her fellow employees at Seasons Hospice, every day is an important time to grant wishes to their patients, the overwhelming majority of who are dying.

Unlike hospitals, which mainly focus on curative measures for patients — even those who are terminally ill — hospices are intended to provide comfort and love to a person in his or her last days, weeks and even months.

Hospice workers give the gift of dignified end-of-life care daily, holiday season or not, Holmes said, which she added is the most rewarding part of her job.

“Seeing those patients be free of those acute symptoms — to not be writhing in pain, to have that hospice success, to see them share laughs and hugs and things with their grandchildren and their own children — that’s the best,” she said.

“At night when I lay down — and it’s me and God, that’s who I deal with — knowing that that family member made it for their son to come home from the military, for that nephew to come in from out-of-state, for that patient to have their cat on their lap or for them to eat lunch without their oxygen because that’s what they want to do and they don’t care how low their stats drop, it’s those things, just making sure they have what they need, that’s my measure of success.”

The success varies from patient to patient, though, who range in age anywhere from 18 to 98.

“We do get very young patients; usually 18 years old and up, though we do get a lot of 30s, a lot of early 40s and 50s [and] a lot of 60s,” Holmes said. “Usually, cancer is the culprit, unfortunately, and those are especially hard because the [patients] generally have young families and their parents are still with us a lot of times. To have that parent experience the loss of their child at such an early age is absolutely devastating.”

As she continues, Holmes’ smile fades, sadness beginning to cloud her coffee-colored eyes.

“I’ll be honest,” she said. “In my 25 years of nursing, fortunately and unfortunately I’ve been involved in quite a number of situations where you do kind of go numb after a while. When I meet these family members, too, they don’t know what hospice is and I think it’s because there’s not a lot of talk in the community about hospice.

She added: “We’re not here to take anybody’s lives; we’re here to enhance the time that is left, so I do comedy with them. I may crack a little joke and I kind of develop a little joke with each and every family member or patient and that’s what I keep thinking about. It just brings a smile to my face because you know that was a connection that you made with those people.”

It’s the connections, too, that hospice employees make with one another that lighten the nurses’ daily burdens, as well as family, friends and pets.

In Bulldog country, the University of Georgia’s recent SEC championship and the team’s January trip to Pasadena, Calif., where they’ll challenge No. 2 seed Oklahoma in the Rose Bowl Game, also helps, Holmes said.

Lisa Price, one of the facility’s social workers, smiled, half-whispering ‘Go Dawgs’ as Holmes paused, mid-sentence.

“That’s the thing about it,” Price interjected. “We’re a big team and none of us could do our job without the others and the families, too. We have a good social and psych support here, and we’re a team.”

That team is part of what keeps Holmes coming back to work every morning, good days and bad. Her patients, too, make the job worth it.

And, at the end of the day, Holmes said she also knows she can turn on her radio, cued to a Pandora comedy station, and just laugh.

“I have a really good sense of humor; I love to laugh and I love to crack jokes,” she said. “I think it’s real important to keep a good sense of humor because even patients who are terminal, they still like to laugh and joke and kid, and we really enjoy that part, too. It’s not all crying; it can be, some situations that’s just where you’re at, but it’s all about making this better.”

Complete Article HERE!

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12/18/17

Death Without Duality: Three Both/Ands at the End of Life

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by

Dying, like living, is not an either/or affair. It’s a both/and. Which is part of what makes it all so maddening for the floundering human who craves the comfort of dualities, of right and wrong, of fail-proof instructions.

I was reminded of this by some of the masters this month when I had the honor of hosting the End Well symposium in San Francisco. Twenty-eight speakers took the stage and talked about their experiences of almost dying, or treating the dying, or mourning someone who has died, or caring for the caregivers, or trying to shape policy or redesign systems or teach people about dying and/or do some of these simultaneously. There was some anger, and no small amount of sadness of course, but also a surprising amount of laughter. It turns out that we are funny right to the end.

Here are three both/and axioms that I heard echoed most often from people with a hugely wide range of professional backgrounds:

1) Reckoning with one’s life at the time of death is both the simplest thing in the world and the most complex.

Buddhist teacher and co-founder of the Zen Hospice Project, Frank Ostaseski, put it beautifully:

“At the end of life, it gets really simple: Am I loved? Did I love well?”

He’s right. Those questions are incredibly simple. As are the “four things” one can say — “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” — at the time of death, popularized by Ira Byock. One of the huge, unique gifts of facing the end of life — whether your own or someone you love — is that the urgency for healing is undeniable.

But the dynamics that spark and rot and flow and flutter underneath those questions are anything but simple. They are as complex as human relationships as a whole, which is to say very fucking complex. The answer to the question of whether I am loved may seem obvious to an outsider, but if I’ve never felt loved in the right way by the one person I needed it most from, I may not be capable of a “yes.” Even at the time of death, especially at the time of death, we are not logical creatures.

And to answer whether we have loved well is perhaps an even more charged and challenged task. We carry our regrets and sense of relational inadequacy around for decades and then, in the end, are asked to lay them down and surrender to our own imperfection. A tall order. The tallest perhaps. Dr. B.J. Miller, former executive director of the Zen Hospice Project and a clinician, teaches:

“If there is any enemy at the end of life it is shame.”

If we can’t shed our shame, it makes it hard to go. The power in the dying process, from what I gather from these wise souls, is acknowledging the complexity underneath or behind the simplicity and still managing to grace one another with the forgiveness and recognition that we all so desperately crave. It is the kind of emotional courage that transcends death.

2) Our job, when caring for the dying, is to ease suffering, but also recognize that it is a source of meaning for many people.

B.J. also said, “I wouldn’t wish a lack of suffering on my worst enemy. There’s no way to learn.”

He knows a bit about it, having had three limbs amputated and survived near-lethal burns on much of his body after an accident in college. His own time in hell was incredible preparation for a lifetime of treating patients and talking with people about facing death.

Some of us have an inclination to romanticize death. It’s the peak of drama, no doubt — the final scene. But of course it is not all buzzer beater catharsis and mystical visitations. It is sometimes choking and seizing and terrible, ugly, unbearable pain. In a word, suffering.

Now the role of palliative care, but all health care really, is to ease suffering. This is true and important and so often lost in our current system, which too often feeds the wrong motivations in otherwise decent and smart humans. We have to redesign the system so that easing suffering is the heart of everything we do, or as designer Ivor Williams puts it, “Death involves everyone. Design accordingly.”

And yet, B.J. Miller would not be B.J. Miller without his suffering. None of would be any of us without our suffering. It is what erodes our delusions and softens our hubris and strengthens our capacity to resist duality and blame. It is the fires in which we are all forged.

So that, too, we must remember. Which doesn’t mean easing off on pain meds, but it does mean witnessing suffering as a sacred and necessary part of being human, even as we try to work with its ferocity and sit with the one being visited at this particular moment. Or as Dr. Lucy Kalanithi, a clinician, beautiful speaker, and widow to Paul Kalanithi, author of When Breath Becomes Air, put it:

“A gift we get to have in medicine is to be witnesses. It’s a front row seat to the human condition.”

3) When you die, you are the most alone you will ever be, and yet you cannot do it well without the gift of others.

Think about it: There is no journey more solitary, by definition, than that of dying — unless you Thelma-and-Louise it. Just as you have lived in your body alone all your life — experienced its holy and wholly specific alchemy of aches and pains and pleasures — you and only you leave that body at some unpredictable moment. (As I write this, I’m reminded how otherworldly pregnancy is, a moment when women actually do, in a sense, share their solitary experience for 10 strange months.)

In any case, accepting the solitude of it is probably key to surrendering to it. You have to go it alone, at least from a purely physical sense.

And yet, to die well is to die together. Or at least surrounded by people who care for you in your time of exquisite vulnerability. Hopefully these are people who have known you at your most robust, people that you have cared for, people you have eaten and drunk too much with and laughed beside and tickled and fought with and repaired again. Hopefully these are people who know your wishes and will fight like momma bears to see them through.

In one study, 66 percent of people said that the thing they feared most at the moment of death was pain. Understandable. And not particularly surprising. Do you know what topped that fear? The fear that they would be a burden to their family members — logistically, psychologically, financially.

Dr. Aditi Mallick says, “The things that scare us the most about death are at the core of what it means to be human.” Indeed, we fear being dependent on others, being inconvenient and messy and powerless, our whole lives long. And when we die, this fear becomes epic. Our power lies in making peace with it. If we live like we will one day die, then we can’t help but create relationships that are loving and strong and imperfect and they can weather even this, the final test of the human condition.

As B.J. puts it, “The end of life is a call to learn how to be loved. The hardest thing of all.”

Complete Article HERE!

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12/11/17

Most people want to die at home, but many land in hospitals getting unwanted care

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By Andrew MacPherson and Ravi B. Parikh

Where do you want to die? When asked, the vast majority of Americans answer with two words: “At home.”

Despite living in a country that delivers some of the best health care in the world, we often settle for end-of-life care that is inconsistent with our wishes and administered in settings that are unfamiliar, even dangerous. In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not.

Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.

Using data from the Dartmouth Atlas — a source of information and analytics that organizes Medicare data by a variety of indicators linked to medical resource use — we recently ranked geographic areas based on markers of end-of-life care quality, including deaths in the hospital and number of physicians seen in the last year of life. People are accustomed to ranking areas of the country based on availability of high-quality arts, universities, restaurants, parks and recreation and health-care quality overall. But we can also rank areas based on how they treat us at an important moment of life: when it’s coming to an end.

It turns out not all areas are created equal. Critical questions abound. For example, why do 71 percent of those who die in Ogden, Utah, receive hospice care, while only 31 percent do in Manhattan? Why is the rate of deaths in intensive care units in Cedar Rapids, Iowa, almost four times that of Los Angeles? Why do only 12 percent of individuals in Sun City, Ariz., die in a hospital, while 30 percent do in McAllen, Texas?

Race and other demographics in a given area certainly matter. One systematic review of more than 20 studies showed that African American and Hispanic individuals utilize advance-care planning and hospice far less than whites. More research is needed to explore these differences and to close these gaps and demand high-quality, personalized care for people of all races.

But race and demographics don’t provide all the answers. For instance, Sarasota and St. Petersburg, Fla., are only 45 miles apart and have similar ethnic demographics. Yet we found that they score quite differently on several key quality metrics at the end of life.

A variety of factors probably contribute to our findings. Hospice, which for 35 years has provided team-based care, usually at home, to those nearing the end of life and remains enormously successful and popular, is under­utilized. Most people enroll in hospice fewer than 20 days before death, despite a Medicare benefit that allows patients to stay for up to six months. Hospice enrollment has been shown to be highly dependent on the type of doctor that you see. In fact, one study among cancer patients with poor prognoses showed that physician characteristics (specialty, experience with practicing in an inpatient setting, experience at hospitals, etc.) mattered much more than patient characteristics (age, gender, race, etc.) in determining whether patients enrolled in hospice. For example, oncologists and doctors practicing at nonprofit hospitals were far more likely than other doctors to recommend hospice.

Also, physicians in a given geographic area are likely to have similar approaches to health care. They may collectively differ from physicians in another area in their familiarity and comfort with offering hospice care to a patient. This may explain why hospice enrollment significantly varies among geographic regions.

Palliative care, which focuses on alleviation of suffering, is often misunderstood by doctors as giving up. Health professionals’ lack of longitudinal, substantive training in end-of-life care only compounds the problem.

Perhaps most important, fewer than half of Americans have had a conversation about their end-of-life wishes — a process known as advance care planning — and only one-third have expressed those wishes in writing for a health-care provider to follow when they become seriously ill. If people do not have a clear sense of their end-of-life wishes, it is easy to imagine that they may be swayed by a physician’s recommendation.

The private sector has led the way in addressing the under­utilization of hospice and improving end-of-life care. For instance, health insurers such as Aetna have devised programs integrating nurse-led case management services for seriously ill individuals, reducing costly and undesired emergency room visits while increasing appropriate hospice referrals. And start-ups including Aspire Health are working with communities to provide palliative care in people’s homes while devising algorithms to help payers and providers identify individuals who might benefit from palliative and hospice care.

Congress also is considering bipartisan solutions consistent with best practices. Congressional leaders have recently introduced several pieces of legislation that would test new models of care for those facing advanced illness, support health professionals in training for end-of-life care and ensure that barriers are removed for consumers to access care.

And Medicare, via its Innovation Center, has led the way in testing promising care models to support those at the end of life, including the Medicare Care Choices Model, which allows individuals to receive hospice care alongside traditional, curative treatment.

But the secret sauce may be a shift in culture. We will not improve the death experience until we demand that our public- and private-sector leaders act and that our local health professionals encourage person-centered end-of-life care.

As with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. There are good and bad places to die in America. However, to ensure a better death for all, we must confront not just geographic disparities but also our resistance to thinking about death.

Complete Article HERE!

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