Tag: End of Life Care

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San Francisco Is At The Forefront Of Another Frontier: Care For Dying People

Volunteers make seasonal mandalas, a ritualistic symbol in Buddhism, out of flowers in the garden of the SF Zen Hospice Project’s Guest House.

by Jay Barmann

In large part due to the enormity of suffering and loss of life during the height of the AIDS epidemic here, San Francisco has emerged two decades later with new models for providing palliative and humanistic care at the end of life, one of the best of which is represented by the tiny San Francisco Zen Hospice Project in Hayes Valley. The hospice facility, in a Victorian on Page Street, grew out of the 54-year-old San Francisco Zen Center just up the street, and began in 1987 as a way for Zen Center members to care for young AIDS sufferers and provide them with a peaceful and comfortable death. (A similar organization, Maitri, sprung up around the same time near the Castro, and continues to this day.) As a new piece in the New York Times Magazine puts it, the Zen Hospice Project “originated as a kind of compassionate improvisation,” and it has served as inspiration and proving ground for Dr. B.J. Miller, a 45-year-old clinician at UCSF who has emerged as a passionate and charismatic advocate for a new kind of end-of-life care. As he tells the Times Mag, his goal, and that of the Zen Hospice Project, is to “de-pathologize death.”

Miller is unique as a spokesperson for this new type of palliative care in that he had his own brush with death early in life, and wears the scars from it very prominently. At the age of 19, while a sophomore at Princeton, he and a couple of friends went climbing on a New Jersey Transit commuter train after a night of drinking. When he reached the top of the train, an electrical current arced out of a charged wire into Miller’s metal wristwatch, sending 11,000 volts through his body and severely burning his arm and two legs. He would soon become a triple amputee, but the experience of being in the burn unit for months and talking himself back from near death profoundly changed how he saw life, especially when he went to medical school. It’s something he describes in a TED Talk from 2015 that’s garnered nearly five million views. In it he says “we are all patients,” using the definition of the word as “one who suffers,” and says he hopes to bring a design sensibility, “that is intention, and creativity, to the experience of dying.”

A year after the Brittany Maynard case gained national attention, around the time that California’s death-with-dignity law was passing through the state legislature in mid-2015, the Times first discovered Miller and the Zen Hospice Project, describing it as “a fascinating, small-scale experiment” in an age when end-of-life care typically falls to hospitals. Hospitals, however, are not programmatically designed to comfort and care for the needs of dying people — they’re designed to make people well and send them home — and families often panic in the face of death causing disruptions in the final months of a person’s life. While, as of 2015, 44.6 percent of all deaths took place in hospice settings, 40 percent of those patients only spent a few days there following stays in intensive care — meaning, as the Times put it, there’s “not enough time to take full advantage of the technique’s soothing possibilities.” Add to that figure the fact a 2013 study that found that more people are choosing to die at home, however they still are transported back and forth to hospitals three or more times in the final 90 days of their lives — time that would be better spent quietly with loved ones, or doing something pleasurable. Also, a hospice experience should free friends and family from the burden (and occasional trauma) of being caregivers, so that they can simply be there with the person who is dying.

That is the focus of the SF Zen Hospice Project’s Guest House: sensory pleasure. Patients are allowed to smoke, outdoors, if they wish. The smell of freshly baked cookies wafting through the house is a frequent one. People play musical instruments. And in a case described in detail in the new Times Mag piece, a 27-year-old man dying of mesothelioma, that care involved welcoming in the man’s throngs of friends, their Bud Light and their video games, decorating his room like a “late-20’s-dude’s room,” letting him go on one last Sunday sailing trip with his friends despite being in significant pain, and helping him plan a wedding for his best friends to be performed in the small garden next door to the Guest House. This all happened in the course of nine days, after which he would be dead. And the wedding went on anyway, and what followed, in the hospice Guest House, was a combination wedding reception-funeral, a celebration that was “mixed up, upside-down and unexpectedly joyful.” “It makes you happy for a place like the Guest House where such things can happen,” Miller tells the Times Mag, via a meeting with colleagues, “a roof where these things can coexist.”

Shortly thereafter Miller stepped down as executive director of the Zen Hospice Project in order to pursue related goals. He’s raising seed money for what he’s calling the Center for Dying and Living, a kind of design lab focused on new models for palliative care, and he’s co-writing a field guide to end-of-life care.

These days the Zen Hospice Project’s Guest House is still only six beds, two of which are reserved for UCSF patients, and the others funded through donations and sliding-scale fees from patients. In contrast to hospitals, which may charge thousands of dollars per day to house and care for a dying patient for an indeterminate period, stays at the Guest House cost the organization about $750 a day, proving that their model is not just better from a human standpoint, but also an economic one, even if traditional insurance does not tend to cover the cost of residential hospice.

It’s something the rest of the country, and the insurance industry, needs to consider, and maybe Dr. Miller will be the one to build it on a larger scale here in the Bay Area, before long.

Complete Article HERE!

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Deaf and dying: How a volunteer team brings palliative care comfort through communication

The first experience Monica Elaine Campbell had with palliative care was helping a woman who had lost her ability to speak because of throat cancer.

 

Monica Elaine Campbell

By Blair Crawford

Campbell, profoundly deaf since birth, is an excellent lip reader and staff at an Ottawa hospital asked if she could interpret the dying woman’s words. The woman had been communicating with paper and pen, but now was too weak even to do that.

“I was very hesitant. Then I thought, well, the least I could do is give it a try,” said Campbell, who is able to speak despite never having heard a word herself. “I put my hand on her right arm and said, ‘I’ve never done this before. I will try my best.”

Campbell leaned close as the woman mouthed her words. Campbell repeated it back and had the woman nod yes if she had understood correctly. She spent five hours with the woman, relaying messages between her and her family and the medical team. She was able to interpret about 85 per cent of what the woman told her.

“I came away a different person,” Campbell said. “I was very touched by the experience.”

The dying woman had not been deaf, but the experience got Campbell thinking about the communication needs of people like herself: the deaf and hard of hearing. A few years later, Campbell was asked to help a deaf friend who was about to receive bad news about her cancer diagnosis.

“I didn’t know much about palliative care, but she was struggling with her terminal illness,” Campbell said. “I thought, my goodness, what if that was me? I thought, I should talk to my deaf friends about death and dying and what our experiences have been.”

Those conversations led Campbell and her friend, sign language interpreter Christine Wilson, to start up the Ottawa Deaf Palliative Care Team, a group of volunteers that provide end-of-life care for the deaf and hard of hearing and their families. In 1999, she enrolled in palliative care courses at Algonquin College with two Deaf colleagues (the Deaf use a capital D to refer to the sub-culture of people who communicate with sign language; “hard of hearing” are those who have lost some or most of the hearing but can still use some speech, sometimes augmented with sign language; the “deafened” or “oral deaf” have lost some or all of their hearing, but either learned to speak before their deafness or, like Campbell, learned to speak despite it.)

Christine Wilson, left, is a sign language interpreter. She and Monica Elaine Campbell, who is completely deaf, founded the Ottawa Deaf Palliative Care Team in 2009.

The group then received additional training from Hospice Care Ottawa. It took five years to get up and running, but since 2009, the Deaf Palliative Care Team has helped inform and console the deaf and hard of hearing, breaking through their sense of isolation at the most frightening, most challenging time of their lives.

Last winter, Campbell was honoured with the Order of Ontario for her work advocating for the deaf in palliative care as well as the June Callwood Outstanding Achievement Award for Volunteerism.

“It’s a pretty scary thing to be in the health-care system,” said Lisa Sullivan, executive director of Hospice Care Ottawa. “You can imagine what it’s like for people who are deaf and to be at the end of life or actively dying and not have a way to communicate.”

Team members have also volunteered to work with the hospice to mentor new deaf volunteers. And they’ve been there, too, when some of their own members have been in palliative care.

The rights of the deaf are protected by the Ontarians with Disabilities Act, while federally, the rights of the deaf  were recognized in a 1997 Supreme Court of Canada decision. Working toward the passage of a Canadians with Disabilities Act was the first item last fall on Prime Minister Justin Trudeau’s mandate letter to the Minister of Sport and Persons with Disabilities, Carla Qualtrough.

It’s a long way from how the deaf used to be treated. Wilson learned to sign because she was the hearing daughter of two profoundly deaf parents. She was just a young teenager when her father died of a brain tumour in 1964.

“For the four months he was ill, I bet he never fully knew what was wrong with him, what was happening or that he was going to die,” said Wilson, a former nurse who now works as a sign language interpreter.

“There were no such thing as interpreters, back then. The night my dad died, they never even called my mother to go and spend that last time with him. It was his brother, my uncle, who was with him and he was the one who called the house and said to us, as kids, ‘Tell your mother that your father has died.’

Even when Campbell’s own father died of cancer in 1993 in a Prince Edward Island hospital, she found herself struggling to understand what was going on and feeling excluded from the discussions.

“The doctor had a meeting with the family, but I wasn’t able to follow what they were saying. I felt very isolated,” she said. “I was very bothered that there wasn’t a system at the hospital to sit down with us as a family.”

The Ottawa Deaf Palliative Care Team sometimes has to get creative in its service. One woman they helped was deaf and had almost no vision. She was able to communicate in a form of sign language tapped on her skin, but the team had to devise a way to identify themselves. Campbell let the woman feel the heart-shaped pendant she wears. One doctor had the woman touch her long braids and stethoscope. Another let her feel his distinctive watch with its wide wrist band. It was the only way for the woman to know who she was communicating with.

“Our modus operandi is that you don’t get ready to serve the deaf when they show up,” Wilson said. “You have to be ready. At first, (the hospice) was very resistant to have Elaine or other members of our team be there as volunteers. But the more they worked with us, the more they could see that it just made sense. Yes, maybe it wasn’t going to be as clear communication … but it’s all rubbed off on the staff. They know when a deaf person comes, we will become a team so that one of us is there all the time.”

There’s a certain pride in being Deaf, but for Campbell that pride took a long time to come. A native of PEI, she was 15 months old before doctors knew for certain she could not hear. Her parents were determined that she would learn to speak, patiently drilling her for hours on how to form words. She attended a school for the deaf and grew close to her classmates, who were like another family to her, but didn’t learn to sign until she was an adult.

“It made me change my perspective. Growing up I felt like a broken person who didn’t quite fit in,” she said. “Then it just hit me one day – I’m a human being who happens to be deaf. I was 38 before I came to be at peace with myself and who I am.”

Complete Article HERE!

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A Dying Man’s Wish To Donate His Organs Gets Complicated

By Karen Shakerdge

Dave Adox, right, and his husband Danni Michaeli at their home in South Orange, N.J., in the fall of 2014. Adox was diagnosed with ALS at age 42 and became almost totally paralyzed within six months. He died last May.

[A]t 44 years old, Dave Adox was facing the end of his two-year battle with ALS, also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.

He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.

“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. Adox had spent a career with words that now came slowly — he was a freelance reporter, including for public radio, then went on to work in advertising.

“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.

Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, where Adox often had been treated, and have

Family members surround Adox on the day that he died last May. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill.

his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.

In May his family and friends flew in from around the country, and joined neighbors for a big celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”

But their plan suddenly changed when University Hospital’s attorneys intervened.

“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.”

Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted suicide or euthanasia — the key being that the patient is already in the hospital.

But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.

Dr. John Bach, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician, and understood and approved of his patient’s plan to end his life and share his organs.

“I could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,” Bach says. “But he wanted his organs to be used to save other people’s lives!”

Other physicians at the hospital supported Adox’s plan, too.

“We have an ethics committee that approved it 100 percent,” Bach says. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”

Adox before he was diagnosed with ALS. He decided to become an organ donor so that other people could enjoy a longer life.

University Hospital has declined several requests for comment, but Bach says the hospital’s attorneys were concerned about liability.

“The legal issue is: What is euthanasia?” Bach explains. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”

Adox had an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”

Having an advance directive on file is especially important for ALS patients, Bach says, because they can eventually become “locked in,” unable to express their wishes.

“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach says. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”

In this particular case, the hospital wouldn’t have had to rely on the directive, Bach noted: Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient’s wishes could not be met.

“Myself and all the other doctors who took care of him in the hospital were almost as upset about it as he and his husband were,” Bach says.

Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.

Mezrich acknowledges this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.

“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible — keeping them alive no matter what,” Mezrich says. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”

Still, planning one’s death to allow for organ donation raises some thorny questions, says Arthur Caplan, director of the division of medical ethics at New York University and author of Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.

Adox and Michaeli with their son, Orion, in the winter of 2015.

Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan points out.

“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he explains.

This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public discussion because “it’s too controversial.”

“If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan says.

But that approach would have a downside, too, he continues. People might perceive doctors as more focused on “getting organs” than caring for dying patients.

Adox takes one last walk with family and friends in New York’s Central Park before going to a hospital to be disconnected from the ventilator that kept him alive.

There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.

About a year ago there, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.

“Obviously we’re all sensitive to any perception of assisted expedition of death,” says Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”

After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.

In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.

“There was a hospital partner,” Friedman says, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, [and was] prepared to be supportive of what Dave wanted and would be able to provide a bed.”

Finally, on the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.

“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounts, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation they disconnected his breathing machine.”

And in the end, Adox’s wishes were met — he was able to donate his liver and kidneys. Michaeli says he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.

“The person we were trying to do a direct donation for was a match,” Michaeli says. “And he has Dave’s kidney right now.”

Complete Article HERE!

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After a 73-year union, two hospital beds pushed together offer the best comfort

Retired Army Col. George Morris, 94, is receiving end-of-life care at Fort Belvoir Community Hospital (Virginia), where his wife, Eloise, 91, is a “compassionate admission,” lying beside him.

By Tara Bahrampour

[F]or 73 years – through wars in Europe and Asia and civil rights battles at home, through the assassination of a president and the rise of rock-and-roll – they shared a bed.

He’d be gone sometimes, flying missions during World War II and the Korean and Vietnam wars, but he always came back to her.

So now, as he lies in a hospital bed unable to say or do much, she lies beside him.

Like many hospitals, Fort Belvoir Community Hospital, where retired Army Col. George Morris, 94, is receiving end-of-life care, allows family members to sleep in a patient’s room on a fold-out couch. But for George’s wife, Eloise, 91, a cancer survivor who has suffered two broken hips and a broken shoulder, that would be hard.

So the hospital made a special exception when they admitted him this month: They admitted her as a patient, too – a “compassionate admission,” their doctor calls it. Standard rooms are normally private, but Eloise’s hospital bed was rolled in and pushed up against George’s – a final marriage berth for a husband and wife who met as teenagers in rural Kentucky in the late 1930s.

He spotted her first.

“I was a sophomore in high school, and I’d gone to see a play in a country school,” said Eloise, sitting up in her reclining bed, a birdlike woman in oversize bifocals whose hair is hardly touched by gray. George rested in his bed beside her. “He saw me and went home and told his mother, ‘I just met the girl I’m going to marry.’ He said, ‘I looked her over real well and I couldn’t find anything wrong with her but one crooked tooth.’ ”

A movie date and a picnic followed. Eloise can’t recall the movie – she was too distracted by the thrill of holding his hand in the dark.

The picnic, however, was unforgettable.

“Here comes George and he had something in his hand with a crank on the end and I wondered what this was.” It was something she’d never seen before – a portable phonograph, and when he turned the crank it started playing “Sweet Eloise,” a popular song at the time. He turned that crank all afternoon. “Oh, I thought that was great.”

The town of Russell Springs, Ky., where she lived on a farm, was eight miles from Columbia, where he lived. He didn’t have a car, so he’d walk the distance to see her. By 15 she was wearing an engagement ring and had no doubts about what she was doing.

“He had thick eyebrows and devilish eyes, and I hadn’t seen any guys my way that good-looking,” she said. “I thought that he was more intelligent than any man I’d ever met.”

They married and had two sons and a German shepherd who played outfield in family softball games. After stints in Tokyo and Alaska, they eventually settled in Annandale, Virginia.

Eloise Morris, married 73 years, wears a ring she chose after she lost her original wedding ring. (It was found many years later.)

Those legendary eyebrows are wispy now, the devilish eyes half-closed as he lies beside a tray of juice and apple sauce. But every now and then as she spoke he chimed in, his voice rising alongside hers like an echo.

“We had some lean times but some great times,” she said. “We didn’t have a lot of material things, but we could sure have a sweet time. There was lots of love around. George could always make me feel so protected.”

It was a stark contrast from her youth – her father left her mother before she was born, and she grew up an only child, helping her mother and grandparents tend to the sheep and cows and chickens.

As partners, the two complemented each other. “He was strong-willed. I don’t mean bossy-bossy. But his father would say, ‘Eloise knows how to make George think he’s boss.’ Some people might call that tricky, but I know how to keep people happy. I know how to keep George thinking that he’s making the decisions.”

Being married to an airman had its challenges. He took her up once in a P-51 Mustang fighter plane and it nearly killed her. “I couldn’t hear and I was very sick to my stomach. When he did the roll, that was fine, but when he did the loop, well, I kind of blacked out and my mouth opened and I just couldn’t stand it.”

George had a lot of friends who didn’t come back from the wars. During Vietnam, “he said one of the saddest things was when he brought the dead soldiers home – he said that was heartbreaking because they were so young.” He retired in the 1970s.

The secret to seven decades of love? “Be happy, whether you’re happy or not. Laugh.” Like they did the time they were posted somewhere new and they arrived before their belongings – including their sheets and pillows.

“We cut up the newspaper and put our heads on one duffle bag, and every time we moved, the paper in it would rattle and we laughed all night,” she said, grinning. “We really, really loved each other. We were lonely, lonely when we were apart, and when he’d come home, it was just heaven.”

Their sons have since died – the older one three or four years ago, the younger one several months ago – and most of their grandchildren, great-grandchildren, and a great-great-grandson live in other towns. Although they visit sometimes, it is mostly just the two of them.

Admitting Eloise so she could be with George was not a hard decision, said the couple’s doctor, U.S. Army Maj. Seth Dukes. “We take care of the people who’ve taken care of our country,” he said. “And we extend that to their loved ones.”

At this point, Dukes said, George is dealing with a combination of medical issues, and the goal is to keep him comfortable.

For Eloise, it’s hard to see him unable to talk or eat much. “The expression on his face has changed; his eyes just look fixed,” she said. “It’s heartbreaking to see somebody lose everything, especially the days that he doesn’t know me.”

But her presence seems to comfort him. “He talks in his sleep, and when he starts I just put my hand on his and he stops.” And during the day, she talks to him. “Even though I don’t know if he can hear me, I always thank him for looking after me so well.”

An aide peeked in. Eloise seemed tired. So she did what comes most naturally: She lay down beside her husband and reached for him, their hands now mottled and roped with veins, but their fingers still knowing how to intertwine.

Complete Article HERE!

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Regina woman’s story reveals growing pains of assisted dying law

Jean Napali and her mother Ruth Schroeder.

 

By Jonathan Charlton

[I]n her last days, 93-year-old Ruth Schroeder lay in bed at Grace Hospice in Regina, slowly dehydrating herself to death because she wasn’t able to die on her own terms.

Schroeder had colon cancer and doctors declined to operate out of fear she wouldn’t survive surgery because of her age — an outcome she’d have been fine with, according to her daughter, Jean Napali, who lives in Vancouver. 

Partly that was because of the pain, but also because the painkillers made it hard to concentrate. Schroeder couldn’t really read, watch TV or even do the crossword puzzles she had long enjoyed.

“During the past year she had been making it very clear that she really was done,” Napali said.

Schroeder had talked with her family about ending her life, and with any doctor who would listen while she was in palliative care at Pasqua Hospital in June; she had followed the development of federal legislation for medical assistance in dying (MAID), which was passed by the Liberal government that month.

However, she then learned she had little time left.

“At that point mom felt very relieved that she only had three months to live and she kind of dropped talking about MAID because she was like, ‘There is going to be an end to this, maybe it’s not the route that I need to go,’ ” Napali recalled.

Schroeder lived at home for as long as she could over the summer, cooking her own meals and doing her own laundry with support from her children and a housekeeper. On Aug. 1, she fell in the middle of the night, aggravating the nerve centre on which her tumour lived; the lightest touch on her leg became excruciating. After two days in an emergency room, she was moved to the hospice. 

Napali is a mental health worker and her sister was a longtime nurse, so they were able keep their mom off drugs that harmed her quality of life. This included an anti-depressant Schroeder’s palliative team put her on after she expressed interest in MAID, Napali said.

The siblings feel their mother wasn’t taken seriously because of her age.

“As a family we were really floundering, trying to figure out how to put this in place. And it wasn’t until after she had died that we realized she could have signed the forms at the end of June when she was talking with the doctors about it and started the whole procedure,” Napali said.

When Schroeder told her she would stop eating and drinking, Napali called her mom’s doctor about ending her life. However, the doctor wasn’t available for a week. When she did arrive, Schroeder’s painkillers had been increased so much that while she knew her own name, she didn’t know the month and said the year was 1976 instead of 2016. The doctor deemed her not competent enough to consent.

“That upset us quite a bit because it was very clear that she was going to be in a lot of pain — that she was in a lot of pain — and that basically she would just be dehydrating to death over the next few days or weeks,” Napali said.

Saskatchewan Medical Association president Dr. Intheran Pillay.

The federal legislation does not allow for people to give advance consent, when drugs don’t cloud their judgment, for medical assistance in dying.

Because Schroeder wasn’t on any life-prolonging medications she could stop taking, it took her 16 days to fatally dehydrate.

“Somehow to me, that seems wrong, that she needs to suffer through that,” Napali said.

“If a dog was kept in a vet’s office to dehydrate to death for two weeks, everybody would be totally up in arms and be calling it inhumane. And that vet would probably lose his license. And yet for a person, that’s deemed acceptable,” she said.

“It was just really hard for us because as her children we knew what Mom wanted. She was ready to go and she wanted MAID but that wasn’t something that could happen for her. I don’t want other people to have to go through what we went through in terms of not having out mom’s wishes done.”

Aside from the roadblock imposed by the law, Napali was never clear on whether her mother’s doctor even agreed with MAID, and has come to believe most doctors in Saskatchewan won’t perform it. 

“I think doctors need to be really clear as to whether they are willing to go that route or not, and if they’re not they need to pass their patient on to somebody who is willing to take a look at that.”

The Saskatoon Health Region is considering a policy to protect the identities of health care providers who participate in medical assistance in dying, fearing that otherwise no one would be willing to provide the service.

The Saskatchewan Medical Association was unable to find any doctors who participate in MAID and were willing to be interviewed for this story. 

SMA president Intheran Pillay said some doctors are in favour of MAID, but others object and feel palliative care should be improved, believing that some requests stem from a lack of it. There’s no way of knowing what that split is, he said.

Jean Napali and her mother Ruth Schroeder.

Health care workers who provide abortions in the U.S. have suffered violence, and some fear similar retaliation around MAID, he said.

Some physicians may work in facilities such as Catholic Health Association hospitals which oppose MAID, and don’t want their beliefs public. Others don’t want their patients to distance themselves if they have different viewpoints, he said.

A person’s primary point of contact for MAID should still be their doctor, who can discuss all options to improve pain control and comfort, he said.

“In a majority of cases we’re able to keep the patient really well controlled with regard to pain. I’ve never, in the 24 years I’ve been in practice, had a problem in terms of referring patients to the appropriate specialist to get that patient the care that they need to make them comfortable.”

People seeking information can look up the websites of the College of Physicians and Surgeons of Saskatchewan, the Canadian Medical Association, the SMA and the Saskatchewan government, he said. SHR this month approved its MAID policy, which includes a decision-making guide.

Eight people in the province have received MAID since the legislation passed, according to the health ministry.

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In Colorado, A Low-Price Drug Cocktail Will Tamp Down Cost Of Death With Dignity

The cocktail, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far.

By JoNel Aleccia

As Colorado’s aid-in-dying law takes effect this month, proponents say they’ll make sure terminally-ill patients have access to a new, affordable drug concoction that will avoid the $3,000 cost of a common lethal sedative that has skyrocketed in price.

Officials with Compassion & Choices, an advocacy group, are reaching out to pharmacies statewide to confirm that they’ll stock components of a lethal four-drug cocktail to substitute for secobarbital, known as Seconal, the pricey sleeping pill most often prescribed to induce death.

It’s the second time in a year that right-to-die advocates have come up with a substitute for Seconal after Canadian drugmaker Valeant Pharmaceuticals International Inc. acquired the medication in February 2015 — and abruptly doubled the $1,500 retail price.

“We were looking for something more affordable and available,” said Kat West, an attorney and policy expert with Compassion & Choices.

The new law, which was passed by a two-thirds majority, was signed into law on Dec. 16 by Gov. John Hickenlooper. Colorado joins five other states — Oregon, Washington, Vermont, Montana and California — in which terminally ill patients, usually those expected to live six months or less, can choose to take doctor-prescribed drugs to end their lives. In Oregon, at least 991 patients have died after taking drugs prescribed since the law took effect in 1997. In Washington state, at least 917 have died under terms of the law enacted in 2009.

Access to the medications can depend, in part, on cost. Many health insurance plans pay for aid-in-dying drugs, advocates said, but some don’t, and the medications aren’t covered by federal programs such as Medicare or Catholic-run health care systems. Medicaid programs for the poor and disabled in Oregon and California will pay, but not those in Washington state, Vermont or Montana. In Colorado, it’s still unclear.

That can create a barrier for terminally ill patients who want to use the law, said Beth Glennon, a client-support coordinator for End of Life Washington, an advocacy group.

“The cost does affect people’s decisions,” Glennon said.

As of March, the latest data available, a bottle of 100 capsules of 100-milligram Seconal had a retail price of $3,082, according to data from Truven Health Analytics. Ten grams is a lethal dose.

When Oregon’s law began, the cost was about $150, recalled Dr. David Grube, national medical director for Compassion & Choices and a family doctor who has practiced in the state for nearly 40 years. He calls the price hikes “an almost-evil practice of greed.”

“I think it’s the black side of capitalism,” he said. “It really breaks my heart.”

Valeant officials didn’t respond to requests for comment, but in March firm officials issued a statement saying that secobarbital is approved only for treating short-term insomnia, epilepsy and for use in pre-operative anesthesia.

“If it is being prescribed for off-label uses, it is not something for which the product is manufactured or intended,” the statement said.

To fight the high prices, doctors in Washington state experimented last year with a cheaper mixture that included three drugs — phenobarbital, chloral hydrate and morphine sulfate. The components are widely available and cost about $500 for a lethal dose. But the combination turned out to be too harsh, said Dr. Robert Wood, a volunteer medical adviser for End of Life Washington.

“The chloral hydrate mixture was too caustic for some folks and our volunteers didn’t like using it,” because some patients became distressed, Wood said.

Most doses of lethal medication are bitter, often requiring patients to take anti-nausea drugs. But the new mixture was not only bitter but also caused a burning sensation in the mouths of some patients, said Glennon. “There was some profound burning,” she said. “We didn’t like working with it. As a volunteer, you want to reassure people. We’re about a peaceful, dignified death.”

Wood and his colleagues came up with a new option this summer, a four-drug mixture that includes diazepam, digoxin, morphine and propranolol, known as DDMP. It costs between $300 and $600.

The mixture, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far, Wood said.

“It is no more difficult than Seconal to ingest and it seems to work quite well,” he added.

The mixture has been used “a fair amount” in California, where an aid-in-dying law took effect in June, said Grube. It’s not yet known how many terminally-ill patients have died under that state’s law, but dozens have requested prescriptions, officials said.

Valeant was widely criticized for raising the price of secobarbital, a popular sedative in the 1960s and 1970s that lost its patent status in the early 1990s. It has been used for aid-in-dying patients since Oregon passed the first U.S. law in 1997, which was modeled on similar action in the Netherlands, where secobarbital was the drug of choice.

Another sedative, pentobarbital, was also frequently used, but supplies in the U.S. became expensive and scarce after European drugmakers objected to its use as an execution drug in death penalty cases.

Doctors and pharmacists are not obligated to participate in aid-in-dying treatment under existing laws, including the Colorado action. In a recent poll, about 40 percent of more than 600 doctors surveyed said they would be willing to prescribe lethal medication, 42 percent said they wouldn’t and 18 percent weren’t sure, noted Dr. Cory Carroll, a solo practice family physician in Fort Collins, Colo., who endorsed the measure.

“The docs that are in opposition have a right to their beliefs, but they don’t have the right to control others,” Carroll said in a recent press conference.

West of Compassion & Choices anticipates that Colorado’s law will be used immediately, as similar laws in other states have been.

“We’re already getting calls from terminally ill people in Colorado who want to access this law,” she said. “I fully expect people to begin requesting prescriptions.”

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A good death

Yong Nie had no papers, no contact with family – and one last wish.

By Kate Legge

[F]or 20 years Yong Nie dodged Australian authorities by lying low, staying out of trouble, earning cash in hand through odd jobs, sleeping rough and keeping to himself. But when he developed an aggressive cancer, the game was up. Gaunt, jaundiced, his once dark hair streaked grey, the 68-year-old illegal immigrant turned up at the emergency department of Sydney’s St Vincent’s Hospital doubled in pain and fearing deportation. But instead of being thrown out, locked up and shipped off, he was welcomed by palliative care staff who took him in as one of our own.

The good death at the heart of this story confirms the generosity of ordinary people performing exceptional acts of compassion without triumphalism or reward because this is what they do every day. Few of those who crossed Nie’s path during the two months he spent at the inner-city hospital founded by the Sisters of Charity will forget him. They couldn’t cure his disease-ridden body but they worked tirelessly to heal a terrible burden in his soul. Those drawn to fulfil his dying wish came from different faiths and countries. There were doctors, nurses and social workers employed in this Catholic health service; monks and volunteers from the Nan Tien Buddhist temple near Wollongong; a Chinese community cancer support agency and Australian Embassy officials in Beijing. Racing against death’s advance, they embraced this fringe dweller who had fallen foul of officialdom with gracious gestures that celebrate the humanity of frontline carers while reminding us how lucky we are to live in a country where goodness thrives.

Yong Nie had not spoken to his wife or ­daughter since leaving the sprawling Chinese port city of Tianjin two decades ago bound for Australia, possibly on a business visa. It was a mission that went awry, humiliation eventually driving him to a flimsy existence with no fixed address, floating on the margins of a society he failed to join. The longer he hid from his family in silence, the harder it was to bridge the distance. He had no Medicare card, no identifying papers, no tax file number, no information about next of kin, and savings of $72.46 when he was admitted to palliative care in May. “There was nowhere else for him to go,” says ­Professor Richard Chye, director of the Sacred Heart palliative care unit at St Vincent’s. “We could not put him on the street. His cancer had spread to his liver; it was too late for treatment.”

Amid grim accounting of refugees around the world as well as those in offshore detention centres closer to our shores, here is an oasis where generosity of spirit is blind to colour, creed and ­citizenship. It doesn’t matter where you’ve come from, since everyone in these wards is contemplating death and energies are focused on journeying comfortably and peacefully to this end. “From a healthcare perspective we were not obliged to report him as an illegal immigrant,” Chye insists. “We provide spiritual care and support and if we reported him to the authorities he would have a lot more emotional angst and worry.”

With only a smattering of English, the patient spent the first week alone, sick and scared as social workers and nurses tried to gently tease out details that would help them look after him. “His biggest fear was that he would be kicked out of hospital,” says Michelle Feng, a Chinese-born nurse who speaks Mandarin. “But I reassured him that was not going to happen.” As luck would have it, her husband emigrated 16 years ago from Nie’s home city, southeast of Beijing. Concerned mainly with alleviating his physical duress, she did not pry. “He told me he’d lost contact with his family, that he had not spoken to them since he came to this country. I was curious,” Feng concedes.

“How can you have a father or husband and no contact? Maybe he was afraid to contact them,” she wonders before dismissing these niggling thoughts. “For me, a patient is a person. They all have their own needs and we have to adapt to them. He is a ­person who has been living underground but I didn’t ask the reason. I don’t know why. At the end of life everyone deserves to be treated as a human being. Really, we don’t have a lot of time.”

Prof Richard Chye with St Vincent’s Hospital palliative care unit staff; at right, Michelle Feng (white shirt) and Trish McKinnon (in black).

Social worker Trish McKinnon arranged for Mandarin-speaking volunteers from the Chinese community support group CanRevive to visit “Mr Nie” so they might better understand his circumstances and needs. Although he had inhabited a shadowland of sorts, he counted a few as friends. He’d helped a single mother in the Chinese community and for many years he’d served as a volunteer at the Nan Tien Buddhist temple, an hour from Sydney. There he got to know Stanley Wong, who came here from China 24 years ago. They cooked together for temple functions. Wong speaks limited English but tells me “we help each other”. Informed of Nie’s rapid decline, he arranged a roster of hospital visits with another Buddhist so that there would be bedside company for him almost every day.

Dr Kate Roberts, a passionate young member of staff, recalls witnessing the turnaround in the patient’s demeanour as the threads of connection were drawn together. “In the first week he had zero visitors. He was severely jaundiced, hardly speaking, and a ­little suicidal. He used to say, ‘Send me back to China or send me to a train station and I’ll sit there until I die’. But then people from the Nan Tien temple began to trickle in and he began to smile. He did a 180-degree switch.”

Michelle Feng says the presence of the Buddhists calmed him. “He’d been so worried and anxious and not able to sleep. But from the first time the Buddhists came to pray around his bed he told me, ‘The worry is gone’. ” He began to eat, requesting white rice congee — a simple dish of boiled rice with no seasonings — for every meal. Feng brought him pickles from home to flavour his food. Stanley Wong arrived with nourishing broth. Gradually Nie gained the confidence and courage to express his urgent desire to reconcile with the family he’d left behind.

Before coming to hospital he had approached the Red Cross for help in contacting his wife and daughter but the search had drawn a blank. Wong says Nie was “too scared” to approach any other agency. But the longing to make amends troubled him deeply. “He realised he was coming to the end of his life and his final wish was to contact his ­family,” says McKinnon. “He was too ill to travel and he had no passport so everyone went out of their way to achieve the goal of a man who was going to die. A reaffirmation of family began and there was this wonderful confluence of palliative care principles and Buddhist acceptance.”

The notion of “existential resolution” is ­central to the Sacred Heart unit’s philosophy of minimising pain and discomfort in the dance towards death while resolving emotional agitation and distress. “We try to ensure patients are physically and emotionally calm and prepared, ensuring peace at the end of life, so we try to assess appropriate information without being intrusive,” says McKinnon.

Once members of the palliative care team became aware of how much a reconciliation with his family meant to Nie, they enlisted the support of Wong, who had a friend who knew somebody in Tianjin, a vast metropolis with a municipal population of more than 15 million. Feng told Nie the city had grown and developed like topsy since his departure but hopes were pinned on the location of his elder brother, a secondary school physics teacher. Wong’s messenger found him within four hours of posting an alert on a missing person’s site.

This breakthrough led to an exchange of phone numbers for Nie’s wife and daughter, as well as news of a granddaughter, now four years old, and the revelation that Nie’s sister, who is based in Hong Kong, was visiting her son in Melbourne. She tells me through her English-speaking granddaughter that she had no idea of her brother’s whereabouts for the past 20 years: “He disappeared.” Those intent on facilitating a reunion stayed clear of the details that had conspired to keep members of this family apart. Feng set up the Chinese version of Skype so Nie could communicate with his wife and daughter. “It was quite amazing,” she recalls. “His wife and daughter were in tears. Everybody was crying. I didn’t want to intrude.”

A plan took shape for getting them to ­Australia. Wong shared the view of Sacred Heart staff that reconciliation would not only console the patient but also salve the heartache and bitterness of relatives bewildered by his unexplained absence for two decades. “He left his ­family. No contact. No money,” Wong says, still perplexed, even though he knows a little of the gambling problems that beset his friend. “He lost money. He couldn’t face them.” Now was not the time for recriminations. “They were very upset, very angry. It was very difficult. I told his daughter, ‘You should come and see your father otherwise you will never see him again’. ”

Wong collected money to help with the reunion. He pleaded with Nie’s wife and daughter to make the trip, convinced they would feel lighter for this rare chance to say goodbye. “I told them this was a time for forgiveness. Now was the time to put everything away, all the unhappy ­stories to one side so they could feel peace.” As Nie’s health deteriorated, hospital staff wrote to the Immigration Department to hasten visitors’ visas issued by embassy staff in ­Beijing. “It was absolutely amazing,” McKinnon says of the frantic efforts to expedite their journey before Nie took his last breath. Wife and daughter arrived at the hospital and were accommodated in a room near his. “We were so anxious about it. From my point of view this was unfinished business and I was sure that a reaffirmation of the family connection would help enormously … I walked them along the corridor to the room, explaining his physical state to prepare them. It was quite ethereal. When they walked in, he introduced them to us. He said, ‘This is my wife. This is my daughter.’ It was an absolute statement of connection,” she recalls.

“There were tears. They were quite overwhelmed by the face-to-face intimacy but they were pleased this had happened. There was not a lot of discussion about the intervening years. This was not the time to trawl through the past. Obviously there was grief from the missing years but there was no castigation at all, just a real sense of solidarity at the end of life.” Nie’s wife brought with her a yellow cloth inscribed with Chinese characters and laid it under his head. Wong explains this Buddhist tradition encourages serenity in death. “This releases the body and brings peace and silence before people pass away.”

Nie died the next morning. A senior monk from the Nan Tien temple was called in to lead prayers and chanting in the room where he lay. “It was very beautiful,” Wong says of his friend’s final hours. “I think we should all become Buddhists,” laughs McKinnon. “It was a wonderful outcome in every way.” Nie’s daughter accompanied the body to the temple for cremation and before their return to China they visited Nie’s sister in Melbourne. Another link mended in this long broken chain.

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