End-of-life doulas:

The professionals who guide dying people

Christy Marek is a certified end-of-life doula: she accompanies dying people and their families.

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Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo

In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.

“It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”

Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.

In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.

A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.

The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.

“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

End-of-life doulas are sometimes called death doulas, though many have reservations about the term.

“To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”

Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.

“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”

Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.”

Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.

Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.

“Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”

Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.

Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.

As death approaches, doulas are tasked with maintaining a sense of calm for dying people and those around them.

“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”

Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.

“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”

Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.

“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”

Kirillin agreed: “I would love for our culture to never need me,” she said.

Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.

“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.

“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”

Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.

Complete Article HERE!

The Cost Of Dying

Hospice’s Biggest Fans Now Have Second Thoughts

The rapid growth of the hospice industry has exposed the burden of putting the family in charge of the death bed.

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The booming hospice industry is changing what it looks like to die in the U.S. Rather than under the care of doctors and nurses in a hospital, more Americans than not now spend their final days in familiar surroundings, often at home, being cared for by loved ones.

While hospice has been a beautiful experience during a difficult time for many families, a yearlong reporting project by WPLN finds end-of-life support often falls short of what they need.

“Our long-term care system in this country is really using family, unpaid family members. That’s our situation,” says professor Katherine Ornstein, who studies the last year of life at Mount Sinai Hospital in New York. “As we increasingly see that we want to provide home-based care, we’re relying even more on caregivers. And it does take a toll.”

The federal government has found that families often misunderstand what they’re entitled to when they elect hospice. And many still have to pay out of pocket for nursing home services or private caregivers, which Medicare rarely covers — all while the hospice agency is paid nearly $200 a day.

Hospice has catapulted from a sector led by nonprofits and volunteers to one dominated by investor-owned companies — including several based in the Nashville area such as Amedysis and Compassus — with more growth expected.

In the process, hospice has ballooned into a nearly $19 billion industry. It’s now the most profitable service sector in health care, as the industry’s business model relies heavily on unpaid family caregivers.

“This seems like it’s in sync with patient-centered care,” says Ornstein, “but the reality of that situation may be very, very challenging.

“I think we have a responsibility to really think about whether the families can handle this.”

‘A Longer-Term Thing’

The Fortners could be the poster family for hospice of old. On an overcast morning last May, they gathered with dozens of other grieving families at Alive Hospice’s residence in Murfreesboro for the nonprofit agency’s annual butterfly release.

McCoy Fortner, 8, opened a triangular box and a dormant monarch began to twitch.

“You can also whisper to it to tell the person in heaven what you want to say,” he explained.

He held the winged messenger on his forefinger until the black and orange wings perked up and stretched out. He relayed a few words to his father, Jeremy, who died two years ago of cancer.

“Thank you for being my best dad,” he said as the monarch took flight.

McCoy’s mom, Elicia, stood behind her son with tears in her eyes. Her husband called off endless chemotherapy. He was on hospice at home and then moved to a residential hospice facility where he passed away. Between the two, he was on hospice for 10 days.

Elicia Fortner said she just wishes they had stopped curative treatment and switched to hospice sooner.

“I don’t know if I really understood the options,” she said. “I didn’t realize hospice could be a longer-term thing.”

The Hospice Nudge

The average amount of time patients spend on hospice has been creeping up steadily, amid an industry-wide push that has aligned most of the interests in health care. The Affordable Care Act gave hospitals new incentives to reduce the number of deaths that occur in the hospital or shortly after a patient’s stay. Some studies suggest that’s caused an uptick in hospice use. And many doctors have been sold on the idea of prioritizing quality of life in the final days.

More patients are also eligible: Hospice has expanded beyond cancer to any terminal illness.

Very few people now die in a hospice facility. More often, hospice is received at home or, increasingly, in a nursing home.

But some of the biggest end-of-life evangelists are beginning to see unintended consequences of putting families in charge of the death bed.

Jessica Zitter, an emergency physician in Oakland, Calif., wrote a book about needlessly dying in the hospital on ventilators with very little consideration about quality of life. She advocates for prioritizing comfort care, which often means recommending hospice. When a patient has been told they have less than six months to live, Medicare and most private insurance will allow them to sign up for hospice services meant primarily to help them die in peace.

Zitter filmed one documentary called “Extremis.” It showed the impossible end-of-life decisions that have to be made in a hospital.

Then, she decided to make a second documentary, still in production, following a husband who took his wife home on hospice after ending cancer treatment.

Zitter met with Rick Tash and Bambi Fass for the nine weeks she spent in at-home hospice. The storyline didn’t play out as expected.

“It made me realize how naïve I — the doctor of death — was,” Zitter says. “This is this beautiful love story of these two people. Then you hear him say, ‘I didn’t sign up for this.’”

Tash became overwhelmed — from managing Fass’s morphine doses to getting her to the toilet every few hours.

With at-home hospice, everyday caretaking — and even many tasks that would be handled by professionals in a hospital or nursing home — are left to the family.

Medicare requires agencies to provide a few baths and a nurse check-in each week. But government data reveals that, on average, a nurse or aide is there at the house only about half an hour a day.

Zitter sat Tash down at his kitchen table, with his granddaughter on his lap. She encouraged calling in reinforcements.

“Asking for more support from hospice, if you need it, is really important,” she told him.

“Yeah, but what they offered me was a volunteer for two hours, one day a week,” Tash responded.

“That’s it?” Zitter asked.

“That’s what they offered,” Tash said.

Zitter was stunned. She realized Rick was getting all hospice had to provide, and it wasn’t nearly enough.

“The good death isn’t as easy as you might think,” she says. “We’ve got to put some things in place here so we can make it more likely that people can achieve that.”

Complete Article HERE!

Struggling with care — When is ‘end of life’ too much?

By GARRY OVERBEY

A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”

Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.

When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.

“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”

The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.

“If I had the means and the courage, I would have ended his misery,” Green said.

She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.

“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.

Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.

A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.

“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”

Through the looking glass

Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.

They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.

Drew was extremely handy and could do almost anything that needed doing around the house.

“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”

Around his mid-50s, things changed.

“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”

The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.

Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.

Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.

They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.

“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”

For instance, Drew once thought he could go upstairs by walking through a mirror.

His condition steadily worsened over the years.

“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”

Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.

“I was under the delusion that I could take care of him,” she said.

Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.

The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.

“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”

Dowling added she wishes there were “many more resources.”

Green said she needed someone to come three nights a week, and someone on call at night.

She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.

“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”

Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.

“It’s difficult to ask anybody to help restrain someone in the middle of the night.”

Reality check

In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.

She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.

His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”

At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”

One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.

He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.

“Obviously, he was lots and lots of work wherever he went.”

She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”

“I knew he was dying,” she said.

A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”

Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.

“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”

Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.

‘The old person’s friend’

The Lake Placid facility turned out to be worse than she could have imagined.

“The place was dirty, the staff overworked and the administration was less than helpful.”

Drew’s conditioned worsened.

“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”

After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”

“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”

Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”

“It was a wonderful place to be,” she said of hospice.

She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.

A better ending

Three months later, Drew’s last days haunt her.

“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.

“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”

She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”

If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”

Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.

“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.

“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.

“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”

Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.

“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”

She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.

“Don’t think that anyone is going to automatically be there to help you.”

She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.

“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”

Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.

Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.

Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.

She’s adjusting to life without her husband.

“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”

Complete Article HERE!

Resting in Peace…

Death doula Jane Whitlock on end-of-life care, grief, and the importance of telling our death stories

Jane Whitlock

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When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.

A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.   

A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”

This Q&A has been edited for clarity and length.

The Growler: Why do you believe death doulas are important?

Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?

A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.

Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.

Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).

How can our modern standardized systems shift to accommodate what death doulas have to offer?

It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?

I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.

What characteristics make an effective death doula?

You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.

I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.

 

What are some ways to go about changing our death culture?

It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?

There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?

Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.

Who do you think is the best at approaching death?

Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.

I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.

Complete Article HERE!

Exploring the End with a Death Doula

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Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.

Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.

What’s a ‘good death’?

It’s not quite the peaceful drifting off I’d imagined for my dad.

By Harriet Brown

At age 86, my father had survived both colon cancer and a stroke that left him with aphasia. His mind was sharp, though, and he wasn’t depressed. A crack bridge player with a passion for Italian restaurants, he was popular at his assisted living facility even though he couldn’t speak much. He told me he’d lived a good life and wasn’t afraid of dying, and he didn’t want to go through any more medical trauma. No chemo, no radiation, no surgeries, no treatment.

His advance directive read DNR and DNI — do not resuscitate, do not intubate. No one would break his ribs doing CPR or make bruises bloom along his arms trying to find a vein. As his health-care proxy, I was completely on board. I’d read Sherwin Nuland’s “How We Die,” Atul Gawande’s “Being Mortal,” Elisabeth Kubler-Ross’s “On Death and Dying.” Comfort would be the priority and any pain would be “managed,” which I assumed meant erased.

Up to 80 percent of Americans die in hospitals or nursing homes, and a third spend at least 10 days in an intensive care unit before they die, many of them comatose or on a ventilator. A week after his sudden diagnosis of widespread metastatic disease, my father was lucky enough to get a bed in our town’s only hospice, a homey facility staffed with attentive and experienced caregivers. The alternative would have been a hospital bed in my living room, so it was a relief to know that my father was in the hands of professionals. They would know what to do.

And they did. The nurses and caregivers were gentle as they repositioned my father in bed, explaining each move even when it seemed he couldn’t hear or follow. When he could no longer swallow they squirted morphine into his cheek and rubbed it so the medicine would be absorbed. “This will make you feel better,” they would say, and my father would turn his head and open his chapped lips like a baby bird.

But his death was not the peaceful drifting away I’d always imagined, where you floated into a calm, morphine-induced sleep, your breath came slower and slower and then simply stopped. He vomited blood over and over. A lifelong stoic who never complained of pain — even when he’d broken a hip the year before — he twitched restlessly in bed, eyes closed, his brow furrowed and his skin clammy.

The magical “managing” of pain and nausea I’d anticipated turned out to be more aspirational than real. The hospice nurse prescribed one anti-nausea medication, then another, without success. Eventually, Ativan and Haldol settled the nausea, and morphine helped the pain. My father was lucky it helped; about 25 percent of people die in pain. One caregiver confided to me, “There are people whose pain we never get under control.”

For days we watched my father’s cheeks hollow, watched him pluck at the thin blanket that was all he could bear on his body. His kind brown eyes glazed over, and some trick of the light made them look blue under his half-closed lids. Sometimes he sat up suddenly, reaching forward, and then fell back on the pillows. I knew there was a name for this behavior, terminal restlessness, that it’s common during the dying process. I knew the gurgling sounds he made as he breathed came from his body’s inability to clear secretions, and that — according to hospice — it probably wasn’t uncomfortable for him.

Leaving the hospice facility one night, I told my 81-year-old aunt that I wished I had the nerve to put a pillow over his face. “I’ll stand guard at the door while you do,” she replied. Dying is hard work. And it’s hard to watch.

On the last night, I sat with my father until the summer sky began to darken. Then I gathered my belongings and leaned over the bed where he lay unresponsive, his eyes closed, his mouth half-open. I kissed his stubbled cheek. “Dad, I’m going now,” I told him. “It’s time for you to go too.” He died a few hours later. He was alone, as most people are when they die, so I don’t know if it was peaceful, if he made a sound or opened his eyes or just stopped breathing.

After he died, I was haunted by scenes of his suffering. I remembered looking out a hospital window nearly 30 years earlier with my newborn daughter in my arms, realizing that every one of the people I saw on the street had been born. For every person walking down Seventh Avenue, a woman had borne pain that tore her body open. It was a horrifying thought.

Drugs help with the pain of childbirth, but they can’t take it away completely. It’s the same with dying.

“Suffering is an ineradicable part of life, [like] fate and death,” wrote psychologist Viktor E. Frankl in his bestseller “Man’s Search for Meaning.” He was something of an expert, having survived nearly three years in a variety of Nazi camps.

Of course, my father’s suffering was nothing like the kind Frankl witnessed. But still, death, like birth, is a creaturely process, a force that wrenches us onward without consulting our preferences or respecting our sensibilities.

In the weeks after my father’s death, I began to understand in a deeper way the meaning of a good death. No drugs took away all my father’s physical pain and nausea. But in the care he was given, the morphine, the quiet words, the repositioning and cool cloths on his forehead, his suffering was addressed even if it couldn’t be “managed.”

And that, I think, is what we all want. Not just freedom from beeping machines and needles and the cold lighting of an ICU, though that matters, too. Not just the absence of pain, which isn’t possible for everyone. But the solace of being seen and heard and acknowledged brings comfort even in the face of deep suffering.

I hope it’s something we can remember as we move toward a society where more of us can have a truly good death.

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The Role of Nurses When Patients Decide to End Their Lives

Some hospitals and hospices have policies that forbid nurses to be part of the process or even to discuss end-of-life options.

By Emilie Le Beau Lucchesi

When Ben Wald, 75, was dying of cancer in 2012, he wanted to use Oregon’s Death with Dignity Act to receive a prescription for a lethal medication that would end his life. His hospice nurse, Linda, was part of the discussion and provided both information and support, said his wife, Pam Wald, of Kings Valley, Ore.

His colon cancer had spread to his lungs, and his weight dropped from 180 to 118 pounds. He struggled to speak or eat.

When he was ready to end his life, the couple wanted Linda with them, but the hospice organization she worked for did not allow it, Mrs. Wald said. The organization allowed other hospice workers, such as social workers and massage therapists, to be present, but not the doctors or nurses it employed.

Without a nurse present, Mrs. Wald was going to be alone with her husband when he died. She wanted someone knowledgeable to support her through the process. She reached out to Compassion & Choices, a national advocacy group for aid in dying. The group paired her with two volunteers, one of whom was a retired intensive care nurse.

“You watch your husband die and you hear that change in breathing,” Mrs. Wald said. “Jane, the I.C.U. nurse, she said, ‘The breathing changes. You’re doing fine, Pam. Keep holding his hands.’”

As access to aid in dying expands this fall, one in five Americans will live in a state that permits legal aid in dying.

But many may still run into the problem the Walds had, because some hospitals and hospices see medical aid in dying as conflicting with their traditional mission of protecting life and avoiding harm to patients. Those that are faith-based typically follow church policy against medical aid in dying.

Some have policies that forbid nurses even to discuss end of life options. Others hold a “neutral” stance on aid in dying, but bar doctors or nurses from being in the room while a patient self-ingests the medication and begins the dying process.

In June, the American Nurses Association passed a position statement providing guidance on the nurse’s role in medical aid in dying, said Liz Stokes, the director of the American Nurses Association Center for Ethics and Human Rights.

“We want to be clear: Nurses absolutely do not have to be present or provide that comfort if they feel they have a moral or religious objection. Our code of ethics states they have the right to object,” Ms. Stokes said.

But for those who wish to support their patients, the new statement defines key words such as “participation” and “presence.” These definitions are meant to encourage organizations to be clearer in terms of a nurse’s ability to answer questions during the decision-making process or offer support in the final moments.

Currently, Ms. Stokes said many company policies are vague and difficult to interpret. Even terms like “to witness” or “to be present” may be open to interpretation. Ms. Stokes said the association has received inquiries from nurses wondering if covering their eyes qualified as not witnessing.

A 2014 study in the Journal of Pain and Symptom Management analyzed 30 policies from members of the hospice and palliative care organization in Washington, where aid in dying has been available since 2009.

Of the policies analyzed, 78 percent prevented nurses or other staff members from being present during or after the prescription was taken. The authors described the policies as “relatively silent” about the rationale for their decisions, but some referred to medical aid in dying as being “outside the scope of hospice practice.” Others did not want to be seen as “taking sides.”

The hospices that allowed staff members to be present made note of the core hospice value of not abandoning patients.

The study found that although the policies tend to be vague, there is a clear distinction between the role of the physician and that of the hospice. Physicians who write the prescription might not be employed by the hospice and therefore not subject to the organization’s particular policies. Policies note that physicians have a responsibility to respond to any complications that might occur after the prescription is ingested.

Each jurisdiction that permits medical aid in dying publishes annual reports on who took the medication, and why, where and whether medical practitioners were present.

In California’s report for 2018, only 54.3 percent of aid in dying patients were reported to have a medical care provider present at the time of ingestion. In Oregon’s 2017 report, only 33 percent of patients did. Many of these medical providers did not remain at the bedside, and 70 percent of patients in Oregon did not have a provider present at the time of death.

Keith Seckel, a registered nurse in Corvallis, Ore., believes it can be helpful to have a medical practitioner present. He has taken care of about a dozen patients who utilized their state’s aid in dying law. He was with them and their families as they took the lethal medicine and died. Mr. Seckel said a nurse is helpful in managing a patient’s discomfort or pain before taking the medication.

Many patients at the end of life experience anxiety, constipation, nausea, pain or shortness of breath. A patient who is short of breath, for example, might get anxious about swallowing the medicine for fear of choking. A nurse can provide reassurance, which Mr. Seckel said takes the pressure off the patient and family members to “get it right.”

He said that having a nurse in the room can also ease the stress for family members, particularly when their loved one makes unfamiliar sounds or unexpected movements.

Mr. Seckel said the timeline varies for each patient. The patient usually takes an anti-nausea medication anywhere from 15 to 60 minutes in advance. In all jurisdictions, the patient must administer the medicines themselves. Nurses and physicians are prohibited from assisting.

Mr. Seckel said some patients then take an anti-anxiety medication before the fatal dose. Within minutes, patients typically report feeling drowsy.

“I might offer to the patient, ‘If you can feel it hitting you, if there is something you want to say, say it now,’” Mr. Seckel said.

The patient then slips into unconsciousness. Mr. Seckel said he watches for signs of discomfort or pain. Some family members ask him for updates as their loved one’s breathing begins to slow or color drains from their skin. Others, Mr. Seckel said, are too connected to the moment to ask questions but want to review the experience with him later.

Because the laws clearly state that a patient must be able to take the medicine without assistance, Mr. Seckel said patients often have questions about their disease progression and how much time they likely have until they can no longer take the lethal medicine on their own. Often, the role of the nurse is to give patients information so they can determine a timeline for themselves.

He said there have also been times when he has been called to the bedside after the patient passed. He said it’s not uncommon for family members to want confirmation that their loved one is truly gone. “I’ve had more than one person say, ‘I’m glad you were there, we wouldn’t have known what to do,’” Mr. Seckel said.

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