Opening the Window

This doula helps clients make the most of death

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Death doula Shelby Kirillin chats with client Kim McGaughey.
Death doula Shelby Kirillin chats with client Kim McGaughey.

The Angel of Death is surprisingly upbeat.

“I know death is sad, but what’s wrong with dying?” Shelby Kirillin says, green eyes alight. “It’s OK. We’re all going to do it.”

Kirillin is a death doula — someone who guides the dying, and their families, through the end of life.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

In 18 years as an ICU nurse specializing in neuroscience, Kirillin witnessed too many bad deaths. She heard frantic families ask for every procedure possible in order to prolong life, instead of easing their loved one’s passing. She saw doctors who advocated continuing medical intervention, even when it was obvious that nothing more could be done.

Then in 2012, Kirillin, along with four Virginia Commonwealth University Medical Center colleagues, helped care for a fellow nurse who was dying of cancer. Their assistance allowed their friend to die at home, peacefully. And Kirillin found her new calling.

Kirillin began an apprenticeship with a death midwife in Canada and is completing her certification by the International End of Life Doula Association. Last year, she began practicing in Richmond. Insurance doesn’t cover her services; her fees are based on the time and level of support a client requires.

She’s not a hospice nurse, who manages patients’ medications and physical needs. She doesn’t give medical advice, nor is she a grief counselor. Rather, she is an “end-of-life transition coach,” as one client dubbed her, who guides people through the emotional and spiritual experience of death.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

“I can’t take away the fact that you have to kneel in a mountain of sorrow,” she says, paraphrasing end-of-life guru BJ Miller. “That can’t be avoided. But what I can do — I’m very much like a birthing doula — I hold the space.”

Family members may be mute in their grief, or mired in doubt, or consumed by guilt. Kirillin helps them to act, to labor along with their loved one. “It’s a beautiful day,” she may say. “Let’s open these windows.” Or, “You want to lay next to your mom? Here, let me move her. Lay next to your mom. Hold her. It’s okay.”

Mary Bolling “Mary Bo” Gassman found out she had cancer just seven weeks before she died. Her husband, Ken Gassman, couldn’t accept it. “I’m an alpha male, OK? And I’ve always been the family patriarch,” Gassman says. He made an executive decision: “We’re going to beat this cancer.”

As a result, Gassman and his oldest daughter, Elizabeth Gassman Chéron, didn’t agree on how best to manage Mary Bo’s symptoms. Chéron wanted to relieve her mother’s suffering; to her father, administering morphine meant bowing to the fact that his beloved wife was dying.

Kirillin became the ambassador, mediating between father and daughter. She encouraged Gassman to stay focused on the goal: not curing the incurable, but giving his wife a reason to wake up the next day, and the day after that. When Chéron admitted, “I just don’t know what to do,” Kirillin told her to trust herself. “You’re doing great,” she said.

On a cool October afternoon, Kirillin said it was time to open the windows. The breeze carried in the sweet scent of wildflowers, Gassman remembers. “A minute or two later, it was gone.” It was 4:32 p.m., and Mary Bo had passed away. “I think Shelby knew how she was going to ride out of there,” he says.

While Kirillin serves the family and friends of those soon to depart, she is chiefly concerned with the desires of the dying. Long before the curtain closes, she says, everyone should clearly state what living means to him or her. Kirillin’s own advance medical directive says, “If I can’t go to a baseball game, follow it, enjoy it and, the next day, remember it, I don’t want to survive.” It’s funny. But it’s true.

When dying becomes a possibility, she speaks with her clients about how they envision their last days. Most people say they want to die at home, for instance, but a hospital may offer more comfort for a patient who’s short of breath.

Boy’s summer spent caring for grandma’s dying dog

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Trevor Lilley, 10, devoted his summer to taking care of his nana's dog. Hershey, 4, was dying of cancer.
Trevor Lilley, 10, devoted his summer to taking care of his nana’s dog. Hershey, 4, was dying of cancer.

Rubbing his hand over Hershey’s head, Trevor Lilley adjusted the paws of the chocolate lab laying on his lap.

Hershey looked up at the 10-year-old boy briefly before dropping his head down again.

Hershey was mostly lying on a dog bed at the end of a couch, but Lilley had carefully squirmed beneath the dog to pet his face and shoulders.

Beverley Brown, Lilley’s grandmother, watched the two as tears filled her eyes.

In June, Hershey, who had just turned 4, was diagnosed with cancer. Since that time, Brown’s grandson had cared for the dog.

“They gave us some options,” Brown said. “But none of them were good.”

Brown said she had gone on vacation in June and when she returned, the family noticed Hershey had a slight limp. At first, the family vet thought Hershey had torn a ligament, Brown said. But when the dog’s condition continued to deteriorate, additional testing revealed a cancer diagnosis.

“They showed us the X-rays and his whole pelvic bone looked like a sponge,” Brown said. “It was completely full of cancer.”

“It looked like it had dissolved,” Lilley said as he reached for a dog toy.

Brown was told Hershey’s leg could be amputated, but the dog would still require chemotherapy and his diagnosis for survival after the surgery was only eight to 12 months. The family discussed putting the dog to sleep, but the vet did not feel it was time, Brown said.

Beverley Brown talks about her grandson who cared for her dying dog this summer.
Beverley Brown talks about her grandson who cared for her dying dog this summer.

We weren’t sure what we were going to do,” she said. “He wouldn’t eat and wouldn’t drink so we just kind of made him hospice.”

Brown, who works as a hospice nurse, said her grandson offered to spend his summer caring for Hershey who required medication 24 hours a day. He told his grandmother he would come to stay at her house while everyone was at work.

“Usually he just sleeps all day,” Lilley said.

But Lilley’s return to school this week meant no one could stay at home with Hershey to give him his medicine, help him outside or clean him up after he went to the bathroom.

Seeing the dog struggling with pain, the family said it was time to euthanize Hershey and made special arrangements last Saturday for the procedure.

Sitting in their living room the day before Hershey was put to sleep, Brown and her husband openly grieved for a loss that had yet to occur.

“This dog was a holy terror when we got him,” Brown said. “He chewed everything he could chew.”

Lilley was quick to point out the corners of the coffee table and end tables that showed signs of a nibble or two.

Roland Brown, Lilley’s grandfather, listed various items that had found their way into the chocolate lab’s mouth, including a remote starter for a vehicle and a television remote controller.

“He dug up the electric fence,” Lilley said tossing a red ball toward Hershey who showed no interest in playing.

“The first year got pretty expensive,” Roland Brown said with a laugh as he brushed away at the wetness near his eyes.

“We contemplated getting rid of him,” Beverly Brown said trailing off in silence.

Hershey was on pain medications, his owner said, and had stopped eating before he was put to rest.
Hershey was on pain medications, his owner said, and had stopped eating before he was put to rest.

Lilley stayed pretty quiet during the discussion and was willing to talk about other family pets, but contributed little to the conversation about Hershey.

Ginny Brancato, founder of RainbowsBridge.com, said Lilley’s silence is common for a child of his age.

Brancato, who lives in Florida, started a website for people who have lost a pet in 1998. She now has more than 20 years of offering free online grief support to people of all ages and a website with more than 10,000 pet memorials.

“I looked for someone to help me when I lost my cat FiFi, but there was nowhere to go for pet loss,” she said.

Brancato set up a grief support system that includes forums, chat rooms, tips and advice for those grieving a pet along with memorials to celebrate a pet’s life. She was touched by Lilley’s care of his grandmother’s dog.

“People don’t realize how traumatic and confusing death can be to a child,” she said. “He needs permission to work through his grief.”

RainbowsBridge.com offers a number of tips for children coping with pet loss such as encouraging a child to talk freely about a pet and discussing death and dying after the pet’s death.

“It’s final and sometimes kids don’t get that,” Brancato said. “And society makes it harder for little boys to grieve because they are told not to cry. Often the first thing they ask when they do talk, is ‘why?’”

She suggested things like planting a tree in a pet’s honor and donating time at a local shelter as ways to help older children with the grieving process.

Beverly Brown said Lilley did not talk about Hershey’s death until this week.

“Yesterday, he finally asked me for details,” Beverly Brown said on Friday. “He asked me questions about the euthanasia process and how Hershey did. I said, ‘you know Trev, it was very peaceful.’”

Beverly Brown told her grandson how Hershey had licked her in the face right before a serum that ended his life was injected.

“He said, ‘Nana, he was just telling you he loved you and thank you,’” Beverly Brown said. “I told Trev, I felt like that was exactly what he was saying.”

Complete Article HERE!

My grandmother’s last months

By Gaia Squarci

Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.
Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.

My grandmother’s life and mine overlapped for 27 years. I always called her “Nonna.”

Our age difference and profoundly contrasting values and way of thinking did not prevent us from developing a strong bond and a relationship punctuated by mischievous games and moments of tenderness and humour. We were amused by our differences.

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“You know, I was still young when you were born,” she told me a few weeks before she died. “It’s a little like we grew up together.”

At a lunch table a few months earlier in Milan, I learned from my mother, her daughter, that Nonna, 85, suffered from incurable liver cancer. Years before, she had already survived two bouts of breast cancer.

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Nonna would tell me time and time again that the news of my birth had given her the strength to fight.

When I learned that she was sick again, I had just landed in Italy, where I would be for only three days before flying back to New York.

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Even more heartbreaking than the fear of saying goodbye to her was the fact that my grandmother did not know how sick she was. My mother and aunt believed she could not bear the thought of a third bout with cancer, this time, affecting her liver. Nonna was told by family members that her liver was ill.

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No one ever mentioned the word “cancer.”

Because of this, one question haunted us until the day she died: Did we have the right to know the truth about her condition when she did not?

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Marisa Vesco embraces her nephew Luca Squarci.

Nonna spent most of her last months at home, surrounded by family. She reconciled with the idea of death and said she could slowly feel it coming.

Doctors felt that surgery and chemotherapy would be pointless.

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In the midst of all this, I realised my mother was losing her mother.

After moving back to Italy for a few months, I witnessed the range of my mother’s emotions and the energy she devoted to the time they had left together.

Nonna’s world shrank to a few walls and fewer streets. In this narrow existence, every detail and daily act took on deeper meaning.

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One of the things my mother treasured most was giving her mother a bath. She did not hesitate to touch her old body, and she did not want others to do it on her behalf.

I joined my mother and grandmother in the bathroom to quietly observe them with my camera.

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As I experienced those precious moments, I imagined myself at an older age and thought about how time changes one’s perspective on being a woman.

As my grandmother faced my lens, completely naked, her body bearing the signs of past and present illnesses, she did not show the slightest bit of shame – only trust and pride.

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If you spoke with people in Nonna’s town they would say she never left the house without being enveloped in a cloud of perfume, her white hair perfectly coiffed and her face tinged with makeup.

I was surprised by the way she confronted being ill without losing her femininity. She was able to poke fun at herself. More than once she asked me, “Am I going to end up on Vogue or Marie Claire?”

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On Oct. 11, 2015, the day Nonna died in Biella, Italy, I was across the world in Brooklyn, New York. I had spent five months with her, celebrating her life instead of mourning her death.

I remember taking a walk through the Greenpoint neighbourhood of Brooklyn and staring for a while at kids competing in a race. I was unable to come to terms with the fact she was no longer a part of the world around me.

I struggled with the concept of death and the abstract emotion we call grief. I found peace only when I returned to Italy to spread Nonna’s ashes.

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My family and I walked to Nonna’s favourite place in the mountains not far from Cossato in northwestern Italy, the town in which she had grown up.

Her ashes felt heavy in my hands. I threw them far up into the air, and they fell all over the grass, and all over me. My mother, brother and aunt did the same, again and again.

In the end, we were covered in Nonna’s ashes and so was the field around us.

Months later, my mother sent me a photograph of that field. It was completely covered in flowers.

Complete Article HERE!

Assisted-living facilities limit older adults’ rights to sexual freedom, study finds

Georgia State University

senior intimacy

ATLANTA — Older adults in assisted-living facilities experience limits to their rights to sexual freedom because of a lack of policies regarding the issue and the actions of staff and administrators at these facilities, according to research conducted by the Gerontology Institute at Georgia State University.

Though assisted-living facilities emphasize independence and autonomy, this study found staff and administrators behave in ways that create an environment of surveillance. The findings, published in the Journals of Gerontology: Social Sciences, indicate conflict between autonomy and the protection of residents in regard to sexual freedom in assisted-living facilities.

Nearly one million Americans live in assisted-living facilities, a number expected to increase as adults continue to live longer. Regulations at these facilities may vary, but they share a mission of providing a homelike environment that emphasizes consumer choice, autonomy, privacy and control. Despite this philosophy, the autonomy of residents may be significantly restricted, including their sexuality and intimacy choices.

Sexual activity does not necessarily decrease as people age. The frequency of sexual activity in older adults is lower than in younger adults, but the majority maintain interest in sexual and intimate behavior. Engaging in sexual relationships, which is associated with psychological and physical wellbeing, requires autonomous decision-making.

While assisted-living facilities have many rules, they typically lack systematic policies about how to manage sexual behavior among residents, which falls under residents’ rights, said Elisabeth Burgess, an author of the study and director of the Gerontology Institute.

“Residents of assisted-living facilities have the right to certain things when they’re in institutional care, but there’s not an explicit right to sexuality,” Burgess said. “There’s oversight and responsibility for the health and wellbeing of people who live there, but that does not mean denying people the right to make choices. If you have a policy, you can say to the family when someone moves in, here are our policies and this is how issues are dealt with. In the absence of a policy, it becomes a case-by-case situation, and you don’t have consistency in terms of what you do.”

The researchers collected data at six assisted-living facilities in the metropolitan Atlanta area that varied in size, location, price, ownership type and resident demographics. The data collection involved participant observation and semi-structured interviews with administrative and care staff, residents and family members, as well as focus groups with staff.

The study found that staff and administrators affirmed that residents had rights to sexual and intimate behavior, but they provided justifications for exceptions and engaged in strategies that created an environment of surveillance, which discouraged and prevented sexual and intimate behavior.

The administrators and staff gave several overlapping reasons for steering residents away from each other and denying rights to sexual and intimate behavior. Administrators emphasized their responsibility for the residents’ health and safety, which often took precedence over other concerns.

Family members’ wishes played a role. Family members usually choose the home and manage the residents’ financial affairs. In some instances, they transport family members to doctor’s appointments, volunteer at the facility and help pay for the facility, which is not covered by Medicaid. They are often very protective of their parents and grandparents and are uncomfortable with new romantic or intimate partnerships, according to staff. Administrators often deferred to family wishes in order to reduce potential conflict.

Staff and administrators expressed concern about consent and cognitive impairment. More than two-thirds of residents in assisted-living facilities have some level of cognitive impairment, which can range from mild cognitive impairment to Alzheimer’s Disease or other forms of dementia. They felt responsible for protecting residents and guarding against sexual abuse, even if a person wasn’t officially diagnosed.

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Co-authors of the study, Georgia State alumni, include Christina Barmon of Central Connecticut State University, Alexis Bender of Ripple Effect Communications in Rockville, Md., and James Moorhead Jr. of the Georgia Department of Human Services’ Division of Aging Services.

The study was supported by a grant from the National Institute on Aging at the National Institutes of Health.

Read the study HERE!

Complete Article HERE!

For Vets, Caring For Sick Pets And Grieving Owners Takes A Toll

By Kasia Galazka

Veterinarians say that helping suffering animals and stressed-out owners can become grueling.
Veterinarians say that helping suffering animals and stressed-out owners can become grueling.

When I walked dogs at a Chicago animal shelter, I wondered how each one got there. Whether a stitched-up pup shirked from my touch or happily greeted me tongue-first, my eyes would well up with salt. I wanted to keep them all.

People who work in animal shelters or veterinary clinics try to save the animals that come through their doors. But they’re at high risk of compassion fatigue, a sustained stress that takes a toll on a caregiver’s mind and body — and her heart.

It can morph into many forms: Some feel guilt or apathy, others turn to substance abuse. Little data exists, but research suggests veterinarian suicide rates are some of the highest in the medical field, and a 2014 study of about 10,000 veterinarians found twice as much “severe psychological distress” in them than in the general public. One 1 in 6 veterinary school graduates say they have considered suicide.

People in the animal community know this is a risk, and they have stories of people they’ve known who have taken their lives.

Among the biggest strains for animal shelter employees is euthanasia, according to a 2009 study published in the Journal of the American Veterinary Medical Association. Derived from Greek terms that mean “good death,” euthanasia is viewed as a humane way to end an animal’s life by organizations including the American Veterinary Medical Association and PETA.

Though rates of animal euthanasia have sharply dropped in the last few decades, about 3 million cats and dogs are estimated to be put down every year. When faced with alternatives like neglectful owners or living on the street, a peaceful death might be the most merciful option, says Stephany Lawrence, a former shelter intake and adoptions manager in Denver. Shelter life can be scary, even detrimental, especially if the animal is ill or has a behavioral issue.

“Nothing is worse than killing an animal, but it’s a really, really compassionate process,” Lawrence tells Shots. The euthanasia is quick; the employees are tender. But the grief of a life extinguished and the suffering that preceded it can linger. “What I struggled with was how anyone could give up a pet or treat animals as disposable items,” she says. “And I actually think that’s probably something shelter workers have a hard time with, as much, or even more so, than euthanasia.”

Private animal hospitals practice euthanasia, too, but there the patient is often a beloved pet. And veterinarians and staff have to manage both the end of the animal’s life and the humans’ grief.

On some days, the tide of clientele truncates how much time and compassion a doctor can give a dying patient or an owner trying to cope. That’s when the fatigue rears for Krista Magnifico, a veterinarian in Jarrettsville, Md., who writes a behind-the-scenes blog “You feel guilty because you’re not there for them in the capacity that you want to be,” she says.

Veterinarians and rescue workers face another challenge: stressed out and even hostile humans. One reason is cost. Veterinary care can be very expensive, even with insurance, and financial constraints can lead to tense situations. If they escalate, stepping out for a breather or bringing in another staffer can help. Sometimes, conflicts escalate to the point where a clinic has to call the police.

Magnifico won’t turn away clients who love and want to help their pet. But if they’re not empathetic to the animal, or the relationship has fractured and no longer benefits the pet, she’ll suggest alternatives, like seeing another clinic. “I have to be very true to the core of who I am,” she says. “And with that, I know that I’m not a veterinarian for everybody.”

Once someone brought in a dog with a bone tumor in its leg. To relieve the pet’s pain, a staff member at Magnifico’s clinic advised that the limb be amputated. But the owner declined the procedure, tied the dog to a tree in front of the clinic, and left.

Sometimes clients ask for convenience euthanasia. Other times, owners threaten to kill the pet themselves. In those cases, the people at the end of the leash cause the most distress for animal shelter and clinic employees.

“The rhythm of a healthy life is fill up, empty out; fill up, empty out,” says Patricia Smith, founder of the Compassion Fatigue Awareness Project, which aims to help caregivers learn healthy forms of self care. But caregivers tend to spend their empathy on everyone but themselves, and they forget to refuel. “The result of that is we have nothing left to give,” Smith says. “We give from a place of depletion instead of abundance.”

“One of the hallmark signs of [compassion fatigue] is that you cannot undo what you’ve been exposed to, and your worldview is forever changed,” says Elizabeth Strand, founding director of the University of Tennessee’s veterinary social work program. Strand noticed a huge need in the veterinary environment for social work, and Tennessee was the first school in the country to create a specialty in veterinary social work. Michigan and Missouri now offer similar programs.

Veterinary social workers provide support for animal-related professionals who need an extra hand resolving stress or stubborn conflict. They can also gently guide grieving pet owners through heartbreak, or help figure out what to do when an animal is a victim of family violence.

Strand and others say that veterinary professionals are becoming more willing to talk about the mental health stresses of their work, and veterinary schools are addressing mental health and emphasizing communication skills.

To bolster resilience, students at Cornell University’s College of Veterinary Medicine participate at the teaching hospital as early as their first year, so that they’re accustomed to working with very sick animals and distraught owners. Students can also staff the school’s pet loss support hotline after special training.

The veterinary school at University of California, Davis, has one full-time counselor and one part-time counselor just for veterinary students. “As our counselor started getting busier and busier, we thought that we had a problem, and what we realized is that this was not a problem,” says Dr. Sean Owens, associate dean for admissions and student programs at Davis’ School of Veterinary Medicine. “We’re actually doing a better job of destigmatizing talking to mental health professionals, meaning that our students are now more likely to drop in and say, ‘I just spent four hours grieving with a client … How do I process it?’ ”

The Davis program provides yoga, art projects, massage therapists — even a surfing club. Clinical skills labs that use actors who practice common scenarios, though awkward, can lift confidence later. The school was the second veterinary school after Colorado State University to offer a “healer’s art” course, which embraces the emotional aspects of practicing medicine.

“What has really triggered [change] has been the greater publicity of suicides of veterinary students,” says Owens. “You’re not fully complete in this profession unless you’re able to grieve and be a human.”

Complete Article HERE!

BEING THERE: A death doula’s mission

By Ellen McCarthy

Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.
Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.

Before he enters the room, Craig Phillips pauses for a deep exhale.

“Just to let everything go,” he says. “And to remember that I’m here for them.”

Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.

There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”

“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.

“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”

The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.

Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.

Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.

As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-care givers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.

It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.

A good death

On a sunny spring day in Alexandria, Virginia, 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.

“Our role is to walk alongside” the dying “in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.

The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.

On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”

One woman talked about her daughter’s stillborn baby.

“That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”

Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families.

“If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”

Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.

They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them.

“As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”

Beautiful souls

Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pennsylvania, next door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.

At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’ Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2 1/2 years of the man’s life.

“I’d bring him flowers,” he recalls. “I’d tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”

A man in Phillips’ running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.

After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson.

“We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”

Phillips has helped long-term-care patients communicate with a letter board and even washed a dog for one family. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big band performances.

But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.

The work has also produced an unintended side effect. It has pushed Phillips’ awareness of mortality even further to the forefront of his mind.

And happily so.

“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”

Complete Article HERE!

The way we die: elderly people need end-of-life options

by Mario Garrett

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.

Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.

In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.

With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.

In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.

In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today 001caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.

The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.

The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.

There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.

If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.

In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)

Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.

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