It’s important to think about our own mortality if we want a good death

Australian oncologist Ranjana Srivastava says: In order to die a good death, it helps to have lived a good life. And a good life must involve contemplating one’s own mortality.

By Sally Pryor

It’s a circular philosophy that, as it happens, doesn’t feature nearly enough in the average person’s thinking, at least not in secular Australia. But for oncologist Ranjana Srivastava, living and dying are completely intertwined, and it’s those patients who are able to accept their own death – inevitable, albeit often untimely – who have inspired her to contemplate what it means to die well.

It’s a question, she says, that many doctors don’t manage to properly consider. The medical profession is focused largely on treating illness and making patients better.

“As I have matured as a doctor and became an oncologist, I have been very struck how there seems to be very little place – or no place, sometimes – in our day to talk about dying, let alone dying well, but simply dying,” she says.

And yet her work involves dealing, daily, with dying patients, often caught up in the complexities of the medical system, at sea when it comes to dealing with what happens next. From the young woman, unable to work and far away from her family, to the 80-year-old man, refusing to accept an end point when it comes to treatment that isn’t working, Srivastava can see all the ways that our society – focused primarily in succeeding and moving forward – leaves little room for contemplation.

Srivastava has been writing, compulsively, since childhood, but it was relatively early in her medical career that she realised the power of story-telling, of human narrative, in allowing her to empathise with her patients, and to do her job properly.

“I’m incredibly aware that no matter how ambitious you are as a doctor, you can only do so much, so that’s why a lot of my public writing and thinking has been devoted around how do we empower everyone else, and how do you not just talk to doctors, but how do you go around doctors and talk to people and patients?” she says.

Her latest book, A Better Death, is a meditation on all the different ways in which death, and our awareness, can give meaning to our lives, even without a terminal illness.

“I guess I saw from an early age that what resonated with me, even as a trainee doctor or even going back as medical student, was someone’s story, because you could present a sterile case,” she says.

We’re sitting in a bustling Melbourne cafe, amid a noisy Saturday morning brunch crowd. On the face of it, it’s a jarring setting in which to nut out the concept of death, but Srivastava has a tranquility about her – a calm and blessed kind of reason – that makes you think she’d be the perfect person to have to deliver bad news, and to guide someone through the process of dealing with a terminal diagnosis. Those familiar with her writing – she is a regular columnist in The Guardian – will know that her commentary often starts with the story of an individual. It’s these personal stories that often drive the point home more vividly than any textbook.

“When I began writing, I thought, well how do I convey what I feel without illustrating why?” she says.

“And I continue to think that the way we empower people and the way we educate people is through letting them get a glimpse of themselves in each of those patients.”

One of the most important lessons she has learned is that everyone has the ability to control the way they die, through the way they choose to live out their last days. The many stories in A Better Death bear this out in different ways, but all with the same ultimate conclusion: if we could all live knowing that we will one day die, our lives will have more meaning, and we will be more motivated to leave some kind of legacy. Insisting on further treatment, even when it has become futile, or refusing to make arrangements for family and help them plan for the future, can make dying well impossible. But how individuals respond to dying has as much to do with society’s fear of morbidity, of talking about death, as with the individual.

“I absolutely think we have control over it, but the more I work, I think that it needs to be almost a societally determined thing,” she says.

“I think it’s very difficult for an individual to do this on their own, because there are so many forces. I will see this, where one of my patients will say, ‘I think I’m ready to just go peacefully, to stop treatment, to focus on being outside on a day like this and enjoying the gardens’, and someone else, who has not come to terms with their mortality but someone close to that patient, will have a different view. And I think it’s always easy to get taken in by that, and I think our medical system makes it very difficult to call it a day.”

Ultimately, she says, dying without a sense of peace is costly, both to the individual, and to society at large.

“There is an enormous cost to the family and to survivors, and this borne out by research and evidence, and then there is the cost to the taxpayer and society, so at every level there are serious costs,” she says.

“I think it’s driven both by patients and doctors, I would say, I don’t think every doctor is pushing patients to have more treatment, to not adopt palliative care, to not think about quality of life, I don’t think it’s as binary as that, and I think it goes back to the kind of society we are. There’s a lot of instant gratification in life – you want something, you get it. You see something, you can buy it, and health literacy is low in general. So I think people genuinely have trouble believing that many chronic illnesses and terminal illnesses cannot be reversed, and are not curable.

“We all have to ask this question of ourselves as to how we are going to contemplate our mortality and not just leave it to our doctors.”

And yet, she says, her work – and the world in general – is filled with examples of hope. While she is “continually astonished” by the number of elderly patients who, when asked, say they have never thought about dying, she is often consoled by examples of people who have thought the whole thing through.

“Just in the news I was listening to Bob Hawke’s widow speak about his death, and one of the things she said that quite struck me was Bob felt he had nothing else that he wanted to do – he was ready,” she says.

“And I thought, here is a man who has soared to the heights of accomplishment, and somehow he has managed to step back and back every year and every decade, until he has reached a point where he says, I have done what I need to do… I found that remarkable, and that’s why there is so much peace associated with him – he lived to a good age, he was able to live well, but he was able to articulate to the family left behind that he was ready to go, and I think it’s very consoling.”

How does she think she will come to deal with her own mortality?

“That’s a really good question. I would like to think that a career in oncology will not have been wasted when it comes to my contemplating my own mortality,” she says. “The reason I could never be sure about this is that I see how people can change when they are ill. It’s very difficult to be over-confident about how you would be when you are sick, when you are speaking about it when you are well. It’s something that each of us has to experience for ourselves. But I do feel that I am more blessed than most in having a lot of good teachers.”

Complete Article ↪HERE↩!

June 26, 2019June 24, 2019

Life, Death and Dignity (Part 3)

Solace in a trying time

Robert Fuller did not want to spend his final days suffering, so he turned to Death with Dignity.

by Ashley Archibald

Part 3 of 3

As Robert Fuller lay dying, he knew he was not alone.

His husband, Reese, stood by his head, crying into a pink towel. They’d been married that morning. A soprano sang over the mezzo piano melody of a violin, soft, but enough to fill the small, crowded room. Those closest to him laid their hands on his arms, torso, thighs and shins.

Downstairs, in the common room of Primeau Place, the affordable housing complex in which Fuller lived, the atmosphere was jovial, full of memories, food and music.

But later, in the bedroom as Fuller’s eyes closed, the gravity of the moment was palpable — to be there was an honor beyond grief.

Perhaps a few people in the room had watched a person die. It seems unlikely any had ever received an Evite to a combination wedding/death-day themed with Hawaiian shirts, courtesy of the host. But there’s a first for everything.

There are those by profession or by predilection who choose to stay with the dying until the dying is done, to comfort the loved ones left behind and ease the souls of the deceased into whatever comes next. They sit in calm vigil so that others, like Robert Fuller, need not be alone.

These are their stories.

Nancy Rebecca

At 10:30 the morning of Robert Fuller’s death, Nancy Rebecca joined Fuller and Reese Baxter in marriage.

She anointed them with nag champa oil, rubbing the scent of magnolia and sandalwood into their hands and asked each to take the other in lawful and spiritual marriage. They obliged.

For nine and a half hours, the two were wed. And then, at roughly 8 p.m., Fuller exhaled his final breath.

To Rebecca’s eyes, it wasn’t the end of Robert Fuller. This was simply a new beginning.

Rebecca isn’t just a marriage officiant. That happy task was more of a favor than a calling.

Rebecca is a healer of conventional and unconventional methods. She practiced as a hospice nurse for eight years, caring for people as they groped blindly toward the eventual conclusion of life. That work takes a toll on the living as well as the dying. In 1994, she bought a book on meditation and gave the calming practice a try.

Everything changed.

“I went to bed and I had a spontaneous out of body experience,” Rebecca said. “When my spirit came back to my body I could see energy fields and I could see spirits.”

Initially, Rebecca found the experience overwhelming, she said. After all, she was a registered nurse, trained in Western medicine. Seeing spirits and energy fields simply wasn’t done.

“In some ways, the energy fields I see around people are quite beautiful. That is not what was disturbing me,” Rebecca said. “It didn’t fit with what I thought to be the truth.”

Rebecca decided to consult professionals.

Rebecca’s mother was a psychiatrist, her father a medical doctor. Afraid of going to an outside physician with her concerns, Rebecca went to her parents. Her mother reassured her.

“There’s nothing wrong with you,” her mother said.

It took time to process her new, perceptive abilities, to parse what and who she was seeing. But it afforded her the capacity to stay with people under her care, observing the angels that came to visit them and helping them understand their own brief glimpses into the beyond at the end of their lives.

Rebecca works mostly with the living these days, helping them to heal their bodies by righting their energies through meditative practice. However, her wife had known Fuller for years, and although he didn’t feel that he needed her healing talents, the pair did have discussions about what came next.

One day, she asked him what he thought the afterlife would be like.

“He said, ‘Well it’s a realm of judgment and grace. For me I hope it leans a little more toward grace,’” Rebecca recalled.

“I said, ‘Based on my experience, it does,’” Rebecca said.

Sile Harriss

The harp in Sile Harriss’ apartment is roughly 22 pounds and rises to the level of her chest when she stands next to it. The burnished gold of the maple wood glows in the low light — though she’s had it for decades, the instrument looks as though it was purchased the day before.

It’s small for a harp, Harriss said. It’s a Celtic harp, not an orchestral version, meaning it lacks pedals and has fewer strings, a deficit made up for in part by small levers at the top of each string that allow her to adjust the note produced by a half step.

That’s OK, though. She could hardly bring a larger instrument into hospital rooms.

For nearly 20 years, Harriss worked as a music-thanatologist, employing ancient melodies and lyrics to respond to the needs of the dying and their families. It’s a unique profession — Harriss estimates there are only 100 of her colleagues in the United States.

Music-thanatology is more than beautiful music, Harriss said. It’s about using the cadences and meters of musical traditions from the Middle Ages to support people through the process of dying.

“Actively dying can be hard work,” Harriss said. “We’re using the music as support, able to observe and discern the sense in the room.”

While there is a repertoire of music, every session is individualized to the needs of the patient and their families. Music-thanatologists react to the breath of the patient, their heart rhythms pumping through the monitors and to the emotions of those watching them go.

Metered, comfortable lullabies might give way to unmetered plain chant as the body systems fail and the vitals weaken, requiring a piece with less structure. Some sessions involved a single phrase or bars of music used repetitively. Sometimes, relatives would request a loved one’s favorite song, or need care themselves.

If family dynamics got tense as the end neared, it was Harriss’ duty to tend to their unspoken emotional needs.

“The work at that time is to work with the family before I get to grandma,” Harriss said. “They need to let go what their hopes have been.”

Harriss trained at the Chalice of Repose, a school located near Missoula, Montana. She found herself looking for a new purpose after her marriage of 30 years ended, and a friend mentioned the school. The idea captured her, and she began preparing to move from Seattle before she was even accepted.

“The letter came 10 days before school started,” Harriss said.

Harriss would spend two years training with 14 classmates, memorizing the repertoire, learning Latin and ultimately signing on as harp faculty. When she began craving life in the city again, she moved to Portland and was hired at Providence Portland Medical Center. If her beeper went off, even in the wee hours of the morning, she would take her harp in its case, go to the bedside and begin to play.

Over time, Harriss developed neuropathy in her left hand — she can no longer feel the strings underneath her fingers and plays the harp through muscle memory. Still, the music emanating from her instrument is warm and calming.

“I’m just in awe and grateful for the opportunity to have been with people this way,” Harriss said.

Arline Hinckley

Arline Hinckley believes in doctors and medicine. She also believes in the right to die.

“We have a wonderful medical care system. It can work miracles,” Hinckley said. “Unfortunately, the tendency with all of this great medical care is to continue to treat people even when it isn’t going to benefit them.”

Hinckley is a board member and volunteer with End of Life Washington, the organization that helps patients like Fuller navigate the complicated road to dying with dignity. In the book “Extreme Measures: Finding a Better Path to the End of Life” by Dr. Jessica Zitter, Zitter compares the medical community’s response to terminal illness as a “conveyor belt,” Hinckley said.

“If you are very ill and get put on a respirator, that’s one way to get on the conveyor belt,” she said. “Artificial food and hydration is another way to get on it. Aggressive chemotherapy, and that kind of thing.

“Once you get on that conveyor belt, it is hard to get off. It is hard to say, ‘This is not what I want, please let me die,’” Hinckley continued.

Her experience in an oncology department after she graduated college convinced Hinckley that people needed a legal right to get off that conveyor belt. She saw many people die, sometimes horribly — the treatment was worse than the disease, she said.

Hinckley worked to get the Death with Dignity initiative on the ballot in Washington, more than a decade after the first of such laws passed in Oregon. She helped educate people on what it meant, and found that even those who did not want to use the law themselves saw value in affording others the opportunity.

She has also assisted people through the process herself.

“People are so full of grace and bravery at that time. They’re very determined,” Hinckley said. “The medication tastes terrible and some people have difficulty swallowing it, but I’ve seen 85-year-old, 95-pound ladies just chug that stuff. They’ve made up their mind, taken care of unfinished business, mended fences, come to a spot religiously where they feel this is OK. They’re just ready.”

End of Life Washington volunteers stay after the person has fallen asleep to help family and friends with the passing. The process can be healing for the living as well — the planning of the death allows people to come to terms with it more totally than a sudden loss, she said.

“They’ve done the work. So, of course they’re sad, but in some ways they’re relieved as well because the person they love is not going to be suffering any longer,” Hinckley said.

Only eight states allow people the option to take their own lives. The most recent law passed in New Jersey in March. Organizations like End of Life Washington are working to maintain the momentum so that everyone, regardless of their location, has an option at the end.

“People deserve a choice,” Hinckley said. “It’s not a choice everyone might make, but options are important to people.”

Complete Article ↪HERE↩!

June 25, 2019June 24, 2019

Life, Death and Dignity (Part 2)

Learning how to die

Robert Fuller sits in his apartment on Capitol Hill, contemplating his rosary.

by Ashley Archibald

Part 2 of 3

When Robert Fuller decided to die, it was a choice informed by personal experience.

Fuller, 75, suffered from terminal cancer. He started feeling sick in July 2018. By September, a CT scan found a tumor growing under his tongue. The news didn’t surprise him.

“I knew it was there,” Fuller said in April. “I could smell it.”

It was a sour scent, he said. More basic than acidic. He could smell it clearly when he was in bed, his face pressed against his pillow.

“I wrapped my head in a pillow trying to smell it. I wasn’t attempting to do anything else,” Fuller said. His body might be failing, but his humor was intact.

Fuller considered treating the cancer medically. He started a round of chemotherapy in January, but didn’t keep it up. As a nurse to the dying, he’d watched cancers take hold despite desperate attempts to hold the disease off.

In many cases, the supposed cure was as bad as, or worse than, the disease itself, he thought.

So, Fuller worked with a medical team to get access to life-ending drugs under Washington’s Death with Dignity Act. On May 10, surrounded by family, friends and some journalists, Fuller injected the drugs into his gastric tube and fell asleep. He would not wake up.

Fuller was able to die on his terms because he found doctors willing to help him and a pharmacy willing to procure or make the medicines he needed. But that isn’t always guaranteed.

The medical community is far from settled on the question of Death with Dignity or, more generically, physician-assisted suicide (PAS). The Code of Medical Ethics, a guide provided by the American Medical Association, opposes PAS, saying that it is “fundamentally incompatible with the physician’s role as a healer.” Add onto that a growing consolidation of medical services under Catholic organizations, run under the belief that suicide is a mortal sin, and the question of assisted dying rises from an ethical debate to a religious edict.

Doctors have covertly engaged in helping their terminal patients die for decades, but access to this style of care was based on relationships and stealth, not need or as a right. As the right-to-die movement expands to new states, advocates hope that will change.

Lay of the land
Only eight states and the District of Columbia afford people the right to die with the help of their physicians. New Jersey is the most recent after the state legislature passed a law similar to Washington’s in March.

Under those laws, physicians decide if they want to help their patients through the legally prescribed process. Some hospitals ban the practice outright. Individuals question their role. As a doctor, having sworn the Hippocratic Oath to “do no harm,” could that include prescribing death?

According to the Washington State Department of Health, 115 physicians and 51 pharmacies assisted 212 terminal patients in 2017 — the last year for which numbers are available. The vast majority operate west of the Cascades. On average, only 10 percent of people who use the law live east of the mountains.

Much of that is related to access, since many of the health care facilities on the east side are associated with Catholic organizations, said Helene Starks, an associate professor of bioethics and humanities at the University of Washington who has studied assisted death for nearly 30 years.

“The fact is that the Catholic health systems are the primary providers in the state outside of the western side, and the non-Catholic organizations are more prevalent on the western side than eastern side,” Starks said.

The UW Medical system — which for these purposes primarily includes Harborview Medical Center, University of Washington Medical Center and Valley Medical Center — allows its doctors to participate in the Death with Dignity process.

Not all want to, however.

Mollie Forrester was the associate director of social work at Harborview Medical Center, and it fell largely on her team to help patients navigate the complexities of the Death with Dignity law. But, the patients weren’t the only ones who needed help.

“It has been a powerful experience to watch doctors get this request from patients,” Forrester said. “This idea of facilitating the hastened death is a process for them.”

Forrester started with the team soon after the law went into effect in 2009, on maybe the third or fourth case that the Harborview team dealt with. The idea was that their group would coordinate the implementation of Death with Dignity, and that once it was established they would farm out the work to social workers in different disciplines.

But Harborview saw so few cases that Forrester and her team ended up handling the care altogether.

It was up to Forrester to sit down with patients asking to end their own lives and explain to them the process and help them through any logistical hurdles that might arise. Their interview might be the last time she ever spoke to those patients.

“I’m walking in and saying, ‘Hi, it’s nice to meet you, let’s talk about your death,’” she said.

Doctors needed help, too. Some refused to participate, flat out. With others, Forrester felt she was performing the role of social worker.

“From where I’m sitting, it’s easy,” she would tell them. “It’s my profession, patient autonomy and patient choice.

“They’re supposed to be healing and helping people live,” she said.

The ask
Death is the inevitable conclusion of life. Fuller knew that, had known that for a long time. He joined the Hemlock Society as a young man, a group that advocated for the right to die. The Washington state society was founded in 1988 as the AIDS epidemic ravaged the gay community.

“I believed in the cause before Kevorkian,” Fuller said, referencing Dr. Jack Kevorkian, the controversial physician who helped as many as 130 people to their ends. He was nicknamed “Dr. Death” by the media and was ultimately arrested and sentenced to up to 25 years in prison for second-degree murder. He got out in eight.

Robert Fuller injects a morphine solution through his gastric tube.

The national Hemlock Society considered itself predominately educational, and when the Washington chapter wanted to assist people in their deaths, they split off to form Compassion in Dying. In 2003, Compassion in Dying was renamed End of Life Washington.

Arline Hinckley is a board member and volunteer for End of Life Washington. She and others in her organization offer advice to medical institutions and direct assistance to individuals who need help finding doctors or prescribing pharmacies. They may also be with the patients at their deaths.

“I feel like it’s a tremendous honor to be allowed in someone’s life at that very vulnerable time,” Hinckley said.

Hinckley’s second job out of graduate school in the 1970s was performing a social work role on a hematology/oncology team, caring for deeply ill patients.

“I saw a lot of people die very badly,” Hinckley said. “I was asked to help a person and I could not do that. I felt terrible, because they were suffering so greatly.”

Her experience led her to join the then-Hemlock Society.

“I have always felt that what happens to your body should be directed by you,” Hinckley said. “People deserve a choice. It’s not a choice everyone might make, but options are important to people.”

In fact, of the small number of people in Washington who use Death with Dignity in a year, as many as 30 percent never take the medications. Some got the prescription and never filled it. Others planned to, but died before they could get the medications.

The medications become almost a safety net, not because people want to die, but because that element of choice is important to them, Starks said.

“I’ve never met anybody in death with dignity who wanted to die,” Starks said. “They wanted to live a lot longer, but they also didn’t want to be a victim of their own illness.”

Even though it’s legal, it’s not easy to come by the medications that are necessary. Many people don’t know they have the option. Hospitals and pharmacies aren’t advertising that they provide these services.

In fact, a pharmacist who spoke to Real Change for this article did not want to be named at all.

“People judge you for the kind of activities that you’re doing and sometimes they equate that with good and evil,” the pharmacist said. “‘You must be evil because you’re providing this.’ Really? If you talk to this family that is suffering with this patient, that are looking for not a means to an end but an option at the end? You’re depriving them of options.”

Moving forward
The medical community is still grappling with PAS.

The issue came up before the American Medical Association in summer of 2018 and was effectively tabled rather than rejected or affirmed.

In November, the AMA’s House of Delegates deliberated a report from its Council on Ethical & Judicial Affairs (CEJA) that looked into the legal and ethical ramifications of PAS. The existing guidance in the Code of Medical Ethics remained unchanged, but delegates also voted to take the matter up at a future policy-making meeting.

Attitudes are changing. More than two-thirds of Americans believe that doctors should be allowed to help terminally ill patients who are in pain to die, according to a 2015 Gallup poll. Young adults were particularly supportive with 84 percent of people between 18 and 34 on board with the concept.

For some, the act is still seen as suicide. Robert Fuller believed differently.

“It’s taking responsibility for the rest of my life,” Fuller said.

Complete Article ↪HERE↩!

June 24, 2019June 24, 2019

Life, Death and Dignity (Part 1)

Robert Fuller planned every detail of his wedding — and his death soon after

Reese Baxter-Fuller puts a ring on his new husband Robert Baxter-Fuller’s hand during their wedding ceremony in their apartment.

by Ashley Archibald

For the last hours of his 75 years on Earth, Robert Fuller was married to a man who he loved.

“I anoint you,” said Nancy Rebecca, a nurse, clairvoyant and sometime wedding officiant, “Mr. Robert and Mr. Reese Baxter-Fuller.”

The cameras flashed, the tape rolled as Fuller and Reese Baxter exchanged vows, rings and a chaste kiss. It was a simple wedding. The couple sat on the couch in their shared apartment in Primeau Place, a senior housing building on Capitol Hill. Baxter wore a black and white sweater, Fuller a relatively restrained Hawaiian shirt with large, colorful flowers against a cerulean background, ready for the party that waited for the newlyweds downstairs. The ceremony commenced at 10:30 a.m. By evening, Robert Fuller would be dead.

The cancer was slowly choking him
Robert Fuller planned every detail of his death. He knew who he wanted to see — invites had gone out weeks before — and what music he wanted to play him out. He’d also planned the food, although he himself couldn’t eat it.

Fuller was dying of a virulent strain of cancer, a disease that lodged itself in his throat and, over the course of a year, was slowly choking the life from him. At the end of March, he already had significant difficulty swallowing, leaving most of his meals to be transmitted through the gastric tube installed in his stomach, hidden by clothes that hung on his tall, wasted frame.

A nurse by training, Fuller knew what the future held if he decided to wage chemical war against his opponent.

“I’ve taken care of patients like me,” Fuller said, sitting in his recliner, staring out his window at a view of the sunlit Puget Sound. “I have a friend whose father died of the same thing 50 years ago. He did pursue all of it, all of the radiation. I only did a little bit of it. He did it all and it was a horrible death.”

That slow, painful, fruitless fight was not how Fuller wanted to spend his final days. He wanted to die as he lived — on his terms. He turned to Death with Dignity.

Robert Baxter-Fuller sits on his bed in blue pajamas. The clock, above, ticked down the minutes until 3 p.m. when Fuller would ingest his life-ending medications.

A public death
Death with Dignity began as an initiative passed by Washington voters in 2008. It allows terminal patients to end their lives by ingesting toxic amounts of drugs rather than suffer in their final months, weeks or days. They ease into sleep and never wake up.

Fuller became aware of it when a woman from California moved into the senior housing building in which he lived and helped manage.

“Wendy was her name,” Fuller recalled. “She started telling me about it pretty quickly, because that’s what people do when they meet me. Strangers tell me everything. On the bus, I don’t care where. They confess to me, they tell me their worst medical problems. They do. It just happens.”

Wendy moved to Washington to kill herself. It was one of the few states that allowed it. Although California would follow suit in 2016, Wendy didn’t have that long.

On the day she was to die, Wendy had a sign put on her door that read “Do Not Disturb.” When it came down, she was gone.

“I said, ‘Woah,’” Fuller said. “That solidified it for me. That’s what I’m going to do.

“But,” he continued, his voice hushed into a conspiratorial whisper, “mine is not going to be private. That is not the way I lived my life.”

Sharing stories, saying goodbye
Everybody seemed to call it something different. “Death Day.” “The Day.” Fuller didn’t care. When he spoke of it, he generally just referred to it as May 10.

“I’ll see you on May 10,” he told visitors in the days leading up to the event.

A gaggle of brightly colored helium balloons marked the entrance to Primeau Place’s common room, an open space lit harshly with fluorescent light. A piano stood against the eastern wall, a drumset assembled beside for the occasion.

People flooded the space, spilling out into the small patio that was sheltered from the spring sun by large trees. They munched on hors d’oeuvres, laughed and shared stories of Uncle Bob, as most people called him.

All the while, Fuller held court, seated next to his new husband as his guests came, one by one, to say their final goodbyes. He held a walking stick sanded down and polished into a smooth, golden surface and carved with tight grooves.

Someone he had sponsored made it for him while still using crack, Fuller had said more than a month before.

“I think that’s significant,” he said. “For people who are still into drugs and think nothing positive can still come out of this.”

That depth of compassion, of acceptance and understanding drew people to Fuller. He’d sponsored many in the room through the Alcoholics Anonymous program. He spent 10 years as a nurse in King County jail. He was an active member of St. Therese Catholic Church. He arranged for Primeau Place to “Adopt-A-Drain” outside the building to give back in another way.

Fuller was many things, said Scott Farrell, who had met Fuller at a spiritual retreat for gays and lesbians more than 40 years prior.

“He was always there for me,” Farrell said. “He was a light in my life. We haven’t been in touch a lot lately, but whenever I see him, it feels like there is no time.”

Nicholas Bross was one of the people Fuller sponsored. He was dressed in a Hawaiian shirt, a gift from Fuller specially for his big day.

“I’m supportive of his choice, his decision to do this,” Bross said. “I’ve been telling people that if I were in his shoes, I’d be doing the same thing.”

It took time for some to accept what he wanted to do, Fuller said. Most made their peace with it after the initial shock. Fuller gave them the space to process on their own terms. They might not be ready, but Fuller was. He had been for decades.

A partygoer leans over to speak to Robert Baxter-Fuller.

Escaping death during the AIDS epidemic
It was 1985. Fuller was living in Chelan, Washington, a handsome young man in his early 40s playing Schroeder, the philosophical musician, in a local production of “You’re A Good Man, Charlie Brown.”

He stopped paging through an old album and touched a photograph of his younger self with a frail finger. In the moment, a dapper Fuller was standing on stage with a seated woman playing a smitten Lucy.

“I have HIV in this picture, but I don’t know it,” Fuller said.

He had moved to Chelan to get away from the death he saw ravaging the gay community in Seattle. Fuller, a recovering alcoholic, watched as two or three young men a week disappeared from his Alcoholics Anonymous meetings.

“It just kept going, so I moved to Chelan,” he said. “There were no gay people and no AIDS, I told myself.”

He’d already taken the test by the time he appeared in that musical. The results would come back negative, but in his bones, he knew they were wrong.

That was when Fuller began packing his bags.

That was the phrase his community used to describe planning for their own deaths. Getting your living will in order, designating a power of attorney, making arrangements for your loved ones.

In the 1980s and 1990s, HIV could be a death sentence. Fuller stood by the sides of two men who he loved as they died. Chet, a swarthy man seated next to Fuller as the pair stare out over a lake, would be reduced to skin and bones in a matter of months. Bill, whom Fuller thought of as his first husband, although they could not legally wed, also died. Tom, an artist who Fuller described as a Jesus figure, appeared in a picture with Fuller at Chet’s funeral.

He would be dead a year later.

At the height of the epidemic, Fuller “packed his bags” every six months to a year. His viral load soared to 700,000 and his T-cell count dropped to 76, laying his body open to infection and possibly death. But he survived until the cocktail of drugs created in the late 1990s hit the market. He resisted the previous medications — those cures also killed.

Until his death, Fuller’s viral load was undetectable, but he carried the symptoms of HIV on his body. When he walked, he would pick up his feet like they were on marionette strings and plant them slowly and carefully on the carpet. It was called peripheral neuropathy, he said, lapsing into the assured cadences of a health care professional.

The loss of proprioception that comes with peripheral neuropathy brought Reese Baxter into his life. Baxter needed a place to stay, Fuller needed someone to help him — he’d fallen many times and struck his head.

“I didn’t know it would be three years,” Fuller said.

How to die with dignity
Dying seems easy. After all, we spend so much time and energy avoiding it.

Dying with dignity? That takes work.

Robert Baxter-Fuller prepares a mixture of morphine and CBD oil to ease his pain.

First, you have to find a doctor willing to let you die. The law doesn’t mandate that doctors participate in Death with Dignity, it only says that they can. Many won’t, for personal reasons. Others can’t because they are forbidden to do so by their employers.

Hospitals that belong to the University of Washington medical network opt in, said Professor Helene Starks, an expert in medical ethics who has been studying end-of-life issues for three decades.

“I think that the general feeling is as a public institution enacting a public law, there was an obligation to provide access,” Starks said.

Swedish Medical Center, in contrast, is affiliated with Providence Health & Services, a Catholic nonprofit organization founded by the Sisters of Providence in 1856. The Swedish Medical Center in Seattle does not forbid its employees from engaging in Death with Dignity, according to a position statement issued after the law passed, although some Catholic-affiliated hospitals do.

This partly explains why as much as 90 percent of people in Washington who use the act do so west of the Cascades — access is extremely limited in the eastern portion of the state.

Fuller was able to receive care at Harborview Medical Center. First, he had to make an oral request. The doctor evaluated him to make sure that he was of sound mind — people with dementia cannot use Death with Dignity. It takes two doctors, one attending and one consulting, to complete the process.

No less than 15 days later, you have to make a second oral request. Fuller’s doctor accidentally scheduled his follow-up 14 days after the initial appointment. He had to come back the next day.

Once a person has jumped through these hoops and gets the prescription for the drug, they must find a pharmacy willing to fill it. This gets complicated, because pharmacists, like doctors, do not have to fill the script if they are opposed to the practice and some don’t have the expertise.

If you can find one — and there are a few in the area — the pharmacy has to be able to access the drugs.

Secobarbital — marketed under the name Seconal — is the preferred option. Called “reds” back in the day, secobarbital was used as a sleep aid until the danger of overdosing and negative interactions with alcohol became apparent.

Bausch Health, formerly Valeant Pharmaceuticals, bought the patent for the drug when it expired. Although the chemical makeup of the drug hasn’t changed in 80 years, the price did. When California passed its End of Life Option Act in 2015, the price of the drug doubled, according to NPR.

Today, the 100 capsules needed to end Fuller’s life would have cost him more than $3,000 without insurance.

Medical professionals created a cheaper cocktail of four drugs that cost roughly $400, but that is where the expertise comes in. A generic pharmacy can’t make the cocktail, but a compounding pharmacy can.

In the end, Fuller would use the cocktail — his pharmacy was not able to get the necessary amount of secobarbital.

The whole process takes weeks if not months for people who, by law, must have a six-month prognosis.

“You have to adhere to a strict process,” Fuller said. “You don’t just walk in and say, ‘I want to get rid of Grandma. I hear you have death panels.’”

Final act
As the clock ticked closer to 3 p.m., the mood at the party changed.

The jovial atmosphere gave way to the weight of the moment as the minute hand ticked by, moving inexorably closer to the time of Fuller’s death.

Robert and Reese Baxter-Fuller look at each other as people say their last goodbyes to Robert.

He went upstairs, his husband on one side, his walking stick on the other. There were balloons outside his apartment door as well, framing a nametag attached to the name plate that read “Uncle Bob.”

Bodies pressed into the small apartment, filling the T-shaped corridor that led from the front door to Fuller’s room on the left and the living room on the right. Fuller went into his room with a select few — he changed into a ocean-blue set of shiny pajamas, the “Hugh Hefner” pajamas, as he liked to call them.

He lay there, his twin bed strewn with pink rose petals, Baxter at his side, holding his hand.

In March, Fuller said that Baxter would hold his hand in a “fishhook,” a wrestling grip that is next to impossible to break until one of the parties lets go.

“He’s now the person whose hand I want to be holding when I die,” Fuller said. “He’s going to give me the cue when I’m falling asleep, or when I seem to be sleeping, that I can leave.”

When the doors opened, Fuller’s friends, adopted family and loved ones shuffled into the room until there was no space left. People squeezed into every nook and cranny, shoved into a closet, trying to use a flimsy clothing basket for support.

By law, Fuller had to ingest the drugs on his own. Many choke it down — the taste is terrible, bitter. He took a syringe and injected the poisonous cocktail into his gastric tube.

Almost a third of people who get the prescriptions never take it. Not Fuller. Now, he would die.

Baxter gripped Fuller’s hand, the other holding an electric pink towel he used to absorb his tears. A violinist put bow to strings, playing Amazing Grace and Ave Maria. As Fuller’s eyes closed and his body went still, the observers raised their voices in song. Those closest to him placed their hands on his body in farewell.

Robert Baxter-Fuller eases into a final sleep.

Technically, he was asleep. Death would come later, after the drugs wrested his final breath away from the cancer that tried to steal it. But Bob Fuller was gone.

Complete Article ↪HERE↩!

June 19, 2019June 18, 2019

What is a good death?

How my mother planned hers is a good road map for me.

By Cynthia Miller-Idriss

Years ago, I called my brother to ask whether he would serve as my health proxy, charged with making decisions about my care in the event of some unforeseeable disaster.

“Sure,” he said affably, and then added: “You should be mine, too. I mean, if I lost a leg or something, I wouldn’t want to live. You’d pull the plug, right?”

Unsettled by our widely disparate visions of a good life — and a good death — I quickly hung up and called my sister instead.

But more than a decade later, as we saw our mother succumb to the final stages of an indignant, drawn-out death from Alzheimer’s disease, I find myself returning to my brother’s words. I still find his view of a good life terribly narrow: If I lost a leg, I would certainly want to live. But I have also come to appreciate his utter certainty about what a good life — and a good death — looks like for him.

Most of us avoid thinking about death, which makes a good one harder to come by. Two-thirds of citizens in the United States do not have a living will. Although most Americans say they want to die at home, few make plans to do so, and half will die in hospitals or nursing homes instead — a situation Katy Butler, author of “The Art of Dying Well,” attributes in part to our “culture-wide denial of death.”

Specifying what a good death means is especially important for dementia patients, who will lose the ability to express their own wishes as the disease progresses. In the early stages, patients have time to reflect and clarify what they do and do not want to happen at the end of their lives. But these options dry up quickly in later stages.

This means that most families are left with a terrible series of guesses about both medical interventions and everyday care. Are patients still enjoying eating, or do they just open their mouths as a primitive reflex, as one expert put it, unconnected to the ability to know what to do with food? What kinds of extraordinary resuscitation measures would they want medical staff to undertake?

In the absence of prior directives, such considerations are estimates at best. As I sat beside her one recent morning, my mother repeatedly reached a shaky hand to her head, patting the side of her face. Puzzled, I leaned in.

“Does your head hurt?” I wondered. She moved her palm with painstaking slowness from her head to mine, cradling my cheek. “Are you in pain?” I asked. Her mouth parted, but no words came. My eyes welled. Is this the path to the good death she wanted?

I may never know the answer. But over time, I did learn how to help her have a better one. One afternoon, after she was frightened by the efforts of two nurses in her residential dementia care facility to lift her from a wheelchair, a quiet phrase slipped out of her mouth. “There you go,” she murmured calmly, just as she had for a thousand childhood skinned knees and bee stings. She was consoling herself, I realized, and teaching me how to do it at the same time.

I learned to read micro-expressions, interpreting small facial shifts for fear, anxiety or contentment. I discovered I could calm her breathing with touch: holding her hand or settling my hand on her leg. She would visibly relax if I made the shushing sounds so second-nature from the sleepless nights I’d rocked my own babies.

“It’s okay, love, you’re okay, I’m here, I love you,” I would murmur, patting her shoulder. She would sigh, and close her eyes.

Some of the path to her good death was luck. Michelle, another dementia resident, decided she was my mother’s nurse. She sat beside her constantly, holding her hand and tucking small morsels of coffeecake between her lips. Whenever I arrived, Michelle would spring up, give me a surprisingly fierce hug and offer her informed assessment of how my mother was doing. “I take care of her,” she told me repeatedly, stroking my mother’s cheek.

Other parts of her good death came through privilege. She was the last of a generation of teachers to retire with a significant pension, easing the substantial financial burden of 24-hour care. My father’s own secure retirement enabled him to care for her at home for years, and to spend hours with her every day after she moved into a residential care facility.

But her good death is also a result of planning. Having laid out her wishes with some precision, my mother was part of the minority of Americans with an advanced directive specific to dementia. This means that we knew she wanted comfort feeding, but no feeding tube. A DNR (do not resuscitate) order helped guard against unnecessary pain and suffering — the broken ribs common in elderly resuscitation attempts, for example — in case of a catastrophic event. In the end, her wishes were followed: there were no tubes and no machines.

Some indications suggest more Americans are starting to think about what a good death will look like.

There are initiatives to encourage people to talk about end-of-life care. The Death over Dinner movement suggests groups of friends host dinner parties to process how they feel about death. “How we want to die,” the movement’s website prompts, “represents the most important and costly conversation America isn’t having.” Indeed, advising people on how to die well may be the logical next step for a burgeoning wellness industry that has captivated the attention of a generation trying to live a better, more balanced life.

There is no way to know for certain whether my mother’s death was the good death she wanted. But her willingness to think it through left us with less guesswork than most — and provided a good map for me as I tried to figure it out.

I am not sure I could ask for anything more.

Complete Article ↪HERE↩!

June 14, 2019June 14, 2019

A Graceful Exit: Taking Charge at the End of Life

How can we break the silence about what happens when we’re dying?

By Claudia Rowe

I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves.

In denial

Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.

“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”

For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.

Talking about death

The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?

Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.

“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”

Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.

Slow medicine

It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.

“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”

It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.

“I don’t think euthanasia matters,” Saul says. “I think it’s a sideshow.”

While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.

McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.

“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”

This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.

“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”

Death with dignity

I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.

Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.

Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.

The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.

Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.

Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.

Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?

If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.

My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.

Complete Article ↪HERE↩!

June 13, 2019June 13, 2019

‘Death doulas’ assist people before and after death

Death doula Christy Marek talks with Mark Quinlan at Our Lady of Peace in St. Paul, Minn. on Friday, May 10, 2019. They discussed the specifics of funeral planning and the nuances of the end of life. She has followed him from the hospital to a transitional care unit, and now to the hospice.

By BOB SHAW

In the dimly lit room, Mark Quinlan struggles to be heard.

His voice box has been silenced by his thyroid cancer. He tries to whisper, but the hum of his oxygen machine drowns out the sound. The voice of the bone-thin 67-year-old barely carries to the edge of his hospice bed.

But Christy Marek is listening.

Marek, an end-of-life assistant called a death doula, leans forward to catch every word. She asks him about funerals, the afterlife and memories of happier times.

“Do you want last rites?” she asks.

The whisper: “I suppose.”

She has been with him for months, in a hospital, transitional care unit and a hospice. Every step of the way, she has guided him through a dark and scary wilderness.

In many cases, death doulas are redefining how people approach death. They are breaking away from traditional generic funerals, and pioneering approaches to grieving, memory and death.

“Death is being reimagined at this moment,” said Anne Murphy, owner of the death-consultation business A Thousand Hands.

In the past, doulas were women working as midwives to help the process of birth. “Death doula” is a term for people who help with the other end of life. They also call themselves celebrants or soul midwives.

“They all do the same thing — companioning for people dying,” said Jane Whitlock, a St. Paul death doula.

The National Doulagivers Institute reports that its training has quadrupled in two years. President Suzanne O’Brien said she has now trained 402 certified doulas in a six-month course. The cost is $997, Twin Cities Pioneer Press reported.

“I just got back from a month of training in Thailand,” O’Brien said in April. “This is needed around the world.”

Doulas-to-be are drawn to a job that that pays up to $100 an hour in Minnesota. The trainers are proliferating, with names like Doulagivers, Lifespan Doulas, Soul Passages and the National End of Life Doula Alliance.

The traveling doula schools are arriving in Minnesota.

One session starting May 31 offers a three-day program by the International End of Life Doula Association for $750. Or you could get training from the Conscious Dying Institute, which is offering three-day classes starting June 22 and September 26, for $2,995 and $1,895, respectively.

The inconsistency makes some uncomfortable.

“I look at the programs where you get certified after a weekend. It is not doing the people you work with justice,” Marek said.

“It is frankly a little bit messy.”

Doulas sometimes overlap the services of a hospice — causing some friction.

“Hospices frankly do not know what to do with the end-of-life doula role,” Marek said.

Susan Marschalk, director of the Minnesota Network of Hospice and Palliative Care, said they do not compete but must learn to work together.

“Doulas are newer, and there is some trepidation about them,” Marschalk said. She said hospices provide medical care and emotional support for dying people.

Doulas are flexible, hired by the hour. They can be employed before or after the dying process begins, helping with funerals and commemorations.

The training for death doulas is sketchy.

It’s a new vocation, with no regulations or standards. With no training whatsoever, anyone can start working as a death doula.

Sometimes they are hired months before a death, and work for months afterward. Some are called at the last minute and may help only in a person’s final hours.

“This is so new. We are all finding our way,” said Marek, of Lakeville, owner of Tending Life at the Threshold.

Being a doula is not a full-time career — yet.

“Right now there are no full-time death doulas,” said doula Whitlock. But she predicts that as baby boomers age, the demand will increase along with the number of deaths.

Doulas seeking full-time work sometimes branch out into related areas — paperwork, aging in place, consulting, or doula services for pets.

“Dying people want to put things in order,” she said. She helped a woman arrange for her ashes to be dropped into the Mississippi River from a pedestrian bridge.

Death doulas encourage doing whatever is meaningful — which can often mean breaking the rules.

For example, one dying man recently requested a wedding and an end-of-life celebration — in the same service. He was engaged, said doula Murphy, and saw the dual-purpose ceremony as meaningful.

What was meaningful at Susan Showalter’s funeral was utterly original.

Showalter, 71, of St. Paul, died in December of diabetes complications. End-of-life adviser Murphy suggested a home vigil, displaying the body for visitors to see.

About 175 mourners were served white wine and Doritos — Showalter’s happy-hour treat.

Respecting an ancient ceremony, they washed the body with washcloths and pans of water. They anointed her with oil, dabbing it on her face and hands.

The group spontaneously sprinkled rose petals to make a pathway between the body and the funeral-home van.

Once the body was gone, they shaped the petals on a table into an outline of her body. Where her feet had been, someone placed hockey socks — which she wore when her feet were cold.

The personal touches enriched the process, said her husband, David.

“This allowed us to be in charge,” he said. “We were participants, not just observers.”

“I swear at least 20 people thanked me for such a wonderful way to say goodbye.”

At other times, death doulas help celebrate the lives of the deceased — before and after they die.

On May 10, Marek hovered at the bedside of cancer victim Quinlan in Our Lady of Peace hospice in St. Paul.

She reminded him of the impact he had on his students, from 40 years of teaching at Centennial High School in Circle Pines.

One of them — Chris Roskowinski — flew from his home in Sherman Oaks, California, when he learned that Quinlan was dying.

The night before, he was taken to the opening-night play at the high school, which he had helped direct until the cancer left him incapacitated. The cast and the audience honored Quinlan — which made the occasion both happy and sad.

“Tell me, did that make it easier for you?” Marek asked. “Harder?”

After a pause, a raspy whisper rose from the bed: “Easier.” The word seemed to hang in the air.

At his bedside, Roskowinski could barely hear Quinlan speak, but nodded appreciatively.

“She can be his voice,” he said.

Complete Article ↪HERE↩!