LGBT seniors grapple with end-of-life issues

by Matthew S. Bajko

While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn’t scare her.

“The end question. ‘The end.’ It’s not a touchy subject for me. I’m irreverent,” said Personna, a transgender woman who grew up in San Jose and now lives in San Francisco. “I have been on the planet for 72 years. I learned long ago this was going to come.”

Personna, a beloved drag performer, playwright, and hairdresser, credits her Mexican heritage with teaching her that death is a part of life. She pointed to the annual Dia de los Muertos holiday — the Day of the Dead in early November — as one example of how, from an early age, she was taught to embrace one’s mortality rather than fear it.

“I am not worried about it. It doesn’t scare me,” said Personna, who graduated with honors from San Jose State University and, for years, owned her own hair salon in Cupertino, which she sold a while back but continues to cut hair at once a month for longtime clients.

Born into a large Baptist family with 16 siblings, Personna remains close with several of her older brothers and their families in the Bay Area. She is confident she can rely on them in the case of emergencies or if her health deteriorates.

“Some of my nieces said, ‘You can live with us,'” said Personna, who has designated one of them the beneficiary of her estate.

Her Plan B, however, is to move into a pueblo outside Guadalupe, Mexico where her Social Security check and personal savings will be worth more.

“I want to spend the rest of my days in Mexico. I don’t want to die in San Francisco,” said Personna. “I am longing to go there.”

Confronting the end of one’s life isn’t easy for the majority of seniors, whether LGBT or straight. Most have not declared an executor for their estate, let alone discussed with their physician what sort of care they want in their dying days.

“It is rooted in the death phobia that North American culture has,” said Brian de Vries, a gay man and professor emeritus of gerontology at San Francisco State University who is a leading expert on end-of-life issues among LGBT seniors.

There are an estimated 2.7 million Americans who are LGBT and 50 years of age or older. Of that age group, 1.1 million are 65 and older. By 2060 LGBT elders in the U.S. are expected to number more than 5 million.

This generation of LGBT seniors differs from its heterosexual counterpart in significant ways, according to aging experts. Most of the LGBT seniors experienced discrimination not only in their day-to-day lives but also in medical settings due to their sexual orientation or gender identity.

LGBT seniors are oftentimes no longer in touch with their birth families, having been ostracized after they came out of the closet. And many don’t have a partner, spouse, or children of their own to rely on as they age.

“The issues around aging alone are particularly meaningful in LGBT seniors,” said Lisa Krinsky, 55, a lesbian who is the director of the LGBT Aging Project at the Fenway Institute in Boston.

And in the case of many older gay men, they lost their families of choice, whether it was their friends, partners, or spouses, to the AIDS epidemic. Thus, they are more likely to be aging alone. And if they are living with HIV, they are largely unprepared for their retirement years having believed they would have died by now.

Dearth of research
For LGBT seniors, living alone “sets them up to more likely need institutional care as one gets older,” said Daniel Stewart, a doctoral student and adjunct professor at Saint Louis University in Missouri.

Stewart and his colleague, Brandy Fox, a Ph.D. student at the university’s Center for Health Care Ethics, presented their research on LGBT older adults’ end-of-life perceptions and preparations at the Gerontological Society of America’s annual conference, held last month in Boston.

“There is not a lot of research on LGBT end of life,” noted Stewart.

Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.

“We know gay and lesbian seniors delay getting care,” said Kysa M. Christie, Ph.D., a clinical psychologist at the Veterans Affairs Boston Healthcare System during a panel at the aging conference focused on palliative and end-of-life care for LGBT older adults.

The reasons can vary, said Christie, from internalized homophobia and heterocentrism to stress-related stigma and poverty. It is estimated that one in five LGBT seniors, she said, “have no one to call in a crisis. Compare that to one in 50 for heterosexual seniors, so that is a stark difference.”

Fox and Stewart interviewed 17 LGBT seniors living in the Midwest about end-of-life issues. The cohort expressed concerns about being a burden as they aged and largely had unfavorable views of health care settings, particularly religious affiliated hospitals.
As one 78-year-old woman told the researchers, “Me and the medical profession do not get along,” recalled Fox.

De Vries and his colleagues in the field of LGBT aging call the lack of discussions about one’s palliative care needs, from who will be one’s power of attorney to what a person’s advance directives are for their medical care, “the missing conversations.” It is a subject that seniors must repeatedly address as their circumstances and choices may change as they age.

“I like that it is plural, as once you have the conversation people think you are done with it,” said de Vries. “It is hard enough to have the conversation. And once you have it, you want to wipe your hands dry and move on. As if that is it; it is one of many conversations people need to have, I think.”

For several years now de Vries has been involved in research in Canada looking at end-of-life issues among LGBT seniors. In one paper de Vries co-wrote, and is under review at the International Journal of Aging and Human Development for inclusion in a special issue on LGBT aging, he and his colleagues note that evading end-of-life discussions “keeps death ‘in the closet’ — along with one’s hopes, fears, and wishes about their end of life.”

The issue struck close to home for de Vries six years ago when his husband, John Blando, Ph.D., who is also a professor emeritus at SF State having worked there as an instructor/adviser in the Department of Counseling, was diagnosed with Parkinson’s disease. The men, both 62 and together 33 years, began to seriously discuss end-of-life issues, such as how to care for each other, as they drew up their wills and estates. When they moved four years ago from San Francisco to Palm Springs and had to revise their wills, they also completed their advance health care directives and durable powers of attorney.

“These naturally involve deeper discussions about end of life — at least that was our experience,” said de Vries. “Of course, elements of end-of-life discussions have dotted our other conversations as we talk about our plans and hopes for the future. I will admit to some discomfort in some of these conversations — about raising issues that we both fear, about releasing strong emotions — but they ultimately rest on expressions of love and opportunities to share.”

‘Death cafes’

Aging expert Brian de Vries, right, with his husband, John Blando, Ph.D.

Since the couple retired to Palm Springs, de Vries has continued to work on end-of-life issues and helped launch a group called PALS, short for Planning Ahead for LGBT Seniors. It presents seminars where people can discuss a range of palliative care issues, from entering hospice care to planning one’s funeral.

“We have a funeral home director come in who is gay and talks about his experiences and the issues and the complications he has seen and how they could be mitigated if people only planned ahead,” said de Vries.

He also borrowed a concept from Britain known as a “death cafe,” where people meet socially to talk about death and dying issues. The gatherings are held at least once a month in Palm Springs and attract upward of 20 people or more.

“What is so neat is it is an in-your-face approach to it. It is not a ‘passing away cafe’ or something subtler. It is a death cafe,” said de Vries. “The idea is it just kicks the door open and brings it out of the closet and brings it into a public space and invites people who may not know each other to a safe space to have these conversations.”

For those LGBT people who have thought about how to plan for their end-of-life care, they tend to focus solely on matters related to their death or dying and not the months or years leading up to their final days. As an example, de Vries said when he once asked a focus group of gay men if they had a will or written out their funeral plans, most had. Hardly any of them, however, had determined who in their life would take them to the hospital or pick them up when, and if, they were discharged.

“It kind of provides an entry into this. It is a bit innocuous to ask someone, ‘I need a ride back and someone to sit with me for an hour, would you do that?’ People feel honored to have been asked and that someone cared enough about me to think I could help them with this,” said de Vries.

Asking for help isn’t always easy for LGBT seniors, noted the Fenway Institute’s Krinsky, even when they have family or friends who can assist them. She recalled talking once to a group of 20 older lesbians and asking them if they would be willing to go to the pharmacy for a friend.

“Eighteen said they would go for someone,” said Krinsky.

But when she flipped the question and asked the women if they would request help for themselves in getting their medications from the pharmacy, “only eight hands went up.”

Krinsky refers to such a model of care as “horizontal caregiving,” where a circle of friends, neighbors, and/or co-workers rely on each other to look after one another.

“We see tight families of choice taking care of each other as best as they can,” she said, “as people are concerned about how will I care for myself as I age.”

Such a structure, she said, upends the heteronormative approach of relying on one’s biological family to provide caregiving. It is expected that a married straight couple’s children and grandchildren will look after them in their senior years and that responsibility is passed on with each new generation.

“Right now, we a have a vertical model of multi-generational caregiving,” Krinsky explained.

Challenges
Even though Personna lives in an LGBT-affirming city like San Francisco and has her family’s support, she is cognizant of the fact that there are still challenges that LGBT seniors must confront.

“Because of my orientation it is totally different than a heterosexual family and their end-of-life situations. So many things are already in place for them,’ she said. “By law you get things and your family connection is built in. My community, we have to build that and do the work. People my age usually don’t have what the heterosexual person has, like built in grandkids to come over and take you to lunch.”

Five years ago Personna moved from Cupertino into the city to help care for her friend, Bill Bowers, 71, a member of the famed gender-bending group the Cockettes whose outrageously designed jackets became a must-have for rock stars such as the members of the Rolling Stones and Led Zeppelin.

Bowers, a gay man who is HIV-positive, had been living alone at the Derek Silva Community when he had a stroke that left him unconscious for two days in his studio apartment. After that episode, he moved into a two-bedroom unit so that he would have a roommate who could look after him. After he lost his first roommate to cancer, Bowers asked Personna to move in.

“I can’t live alone,” said Bowers. “I asked Donna because she was traveling back and forth from the city to Cupertino on weekends to move in. She is here to be my caregiver.”

Personna not only ensures Bowers makes it to his various medical appointments and takes his daily regimen of medications but also provides companionship. They also share many of the same friends and can reminisce about their younger days in the city.

Bowers has designated an executor for his estate and thought about how he would prefer to be cared for at the end of his life. For example, he doesn’t want to be put on life support should it come to that.

He expects to live out his days in San Francisco, though Bowers said if he could afford it he would spend the rest of his days in Paris or somewhere tropical, like Tahiti or the jungles of South America.

Unafraid of death, Bowers is concerned about how he will die.

“I don’t want to suffer,” he said. “I watched my former roommate go through weeks of suffering. I don’t want to go through that or have someone have to watch me suffer.”

Complete Article HERE!

Going Out on a High: the Doctor Advocating LSD for Dying People

Everybody’s got to die. But not everyone’s got to be miserable doing it.

By

The good doctor is irked. In a very gentle way, but still.

“I think it was Confucius who said that the beginning of wisdom is to call things by their correct name,” says Dr. Ira Byock, 67, founder and chief medical director at the Providence St. Joseph Health Institute for Human Caring in Torrance, California. “So to be perfectly grammatically correct and to be absolutely legit, let’s focus on the adverbs and the adjectives, since what we’re really talking about is Dying Well.”

Which is exactly where throats start to get cleared and the death-phobic among us try to edge toward the exits. Because no matter the fact that each and every person alive to read this must one day perish, none of us wants to perish. Particularly not in misery and solitude. “I’ve had patients who have literally said to me that they’d rather be pushed down a flight of stairs,” intones Byock, “than have to face a future of crap care in some facility at the end of their lives.”

But Byock is not in the euthanasia camp — dying quicker doesn’t mean dying better. His pitch, instead: a menu of a few different things, the most compelling being “psychedelic-assisted therapies.”

Studies show about 25 percent of Medicare spending gets poured into caring for people in their last year of living — which would add up to $175 billion last year. That number is catching the eyes of cost-cutting politicians. All this penny-pinching has caused Byock to turn a jaundiced eye to the spate of now-legal physician-assisted death states: California, Colorado, the District of Columbia, Hawaii, Montana, Oregon, Vermont and Washington. “I call it Physician-Hastened Death,” says Byock. “And why the rush to hustle the old and the sick into the hereafter? Excuse me if it just seems a little too convenient to me.”

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Byock’s New Jersey roots, played through the betraying trace of an accent, are even more in evidence as he inveighs, not without flashes of humor, against dying badly and too soon. Working one of his first physician gigs after med school in a rural Montana emergency room for about 14 years, Byock created a clinical assessment tool that measured the quality of life for people who are suffering.

His prescriptions for the medical-industrial complex now include listening to patients, formulating care plans for disease and symptom treatments, helping them sleep, helping them move their bowels, addressing family needs and perhaps most importantly training doctors to do this early. So medical schools have to teach about caring for seriously ill or dying people up to and including the ethics of decision making, and should face financial penalties if they fail to do so. “Most med schools dedicate one month for pregnancy care even if the doctors in question won’t end up delivering babies,” Byock says. ”But 70 percent of physicians will be seeing sick or dying people.”

Byock talks about learning to listen, being sensitive to older patient needs — and then comes the needle-scratching-across-the record moment when he brings up psychedelics.

“I’m a child of the ’60s,” Byock laughs. “And there are legitimate medical uses of psychedelics when we’re talking about end-of-life wellbeing issues.” With an eye to easing pain and creating comfort, Byock turns to the early, legal uses of psychedelics as an adjunct to therapy, as well as the recent and well-publicized benefits of using psychedelics to mitigate PTSD.

Elizabeth Wong, a Northern California nurse and Byock fan who is training to be an end-of-life doula, points to controlled studies that show psychedelics having “lasting effects for up to six months on anxiety issues. It’s real science.” As legalization of medical and recreational marijuana has made clear, this is less of a traditional Democratic/Republican divide, says the committed progressive Byock, but more of which stakeholders win and which will lose.

Dr. Ira Byock, the doc from Jersey.

Losing? If the Dying Well’ers were to succeed, pharmaceutical companies and medical equip

ment manufacturers would take a hit. A contingent of pro-lifers under the aegis of the American Life League has blasted Byock’s work as “stealth euthanasia,” a charge Byock believes is risible. And winning? Nurses’ aides, nursing homes, hospices, long-term care facilities and pretty much anybody who expects to be dying.

“I think you’ll need more than a scorecard to get people to change their minds about this,” says senior care worker Josefine Nauckhoff. “Or at the very least America will have to take seriously those magical, mystical countries that have figured this out.”

Like? “Canada,” Byock says. “They’re taking this seriously,” with an emphasis on hospice centers, senior care facilities and addressing end-of-life issues as though they were both real and manageable.

Byock is pushing the U.S. to follow suit via his indefatigable advocacy in the wellness community, faith-based Catholic initiatives, books, conferences for reimagining the end of life and even the Death Over Dinner movement, where people bite the bullet, as well as biscuits, and talk seriously about death.

A movement is evident in the growing number of related books, death cafés, conferences, efforts at real legislative change and hospitals that are dealing on their own. In 2016, three-quarters of all U.S. hospitals had a palliative care team — focusing on improving quality of life for those with serious illnesses — up from one-quarter of hospitals in 2000, according to the Center to Advance Palliative Care.

“This is not just about avoiding suffering,” Byock said. “I’m in it for the joy. But, I mean, we’re all going to die. Best we do so the best ways we can.”

Byock and an ad hoc group of like-minded experts propose the following public policy planks to improve end-of-life care:

  • Raise training standards for physicians, nurses and allied clinicians in geriatrics, palliative care and related topics.
  • Establish minimum program standards for “palliative care” (disciplines, staffing, services, hours).
  • Require palliative care consultation before high-risk surgery or low-yield treatments for patients with advanced age or physiologic frailty.
  • Eliminate the requirement to forego disease treatments to receive hospice care for comfort, quality of life and family support.
  • Long-term care: Require adequate staffing of nurses and aides.
  • Long-term care: Require living wages and benefits for aide-level workers.
  • Annually revoke licenses of nursing homes in lowest 10 percent of quality and resident safety scores.
  • Award new licenses only to nursing homes qualifying as Greenhouse, Planetree or Beatitude-style models.

Complete Article HERE!

End-of-Life Conversations Can Bring You and Loved Ones Closer

If the opportunity presents itself, honor the person by listening

By Lisa Fields

Before his mother, Dee Dee, died from emphysema in 2009, Larry Sernovitz spent a lot of time at her bedside, keeping her company. Toward the last few days of Dee Dee’s life, she wasn’t very responsive, so her son didn’t expect to connect with her meaningfully anymore. During one of the final visits, Dee Dee had mostly rested, and the two hadn’t interacted much. So Larry was surprised to get a phone call from his mom the next day.

“She sang, ‘I just called to say I love you,’” says Sernovitz, a rabbi in Cherry Hill, N.J. “I don’t know if I fully realized the power of that moment. She bounced back. She was singing to me over the phone. Within the next day, she was gone.”

Dee Dee had sung to Sernovitz often while he was growing up, but her melodic phone call toward the end of her life was an unexpected surprise.

“I said, ‘Thank you so much. I love you, too,’” Sernovitz says. “I didn’t fully realize what was happening: She was beginning to say goodbye. She just wanted to let me know, even though I didn’t realize it at the time, that no matter where she goes, she’ll always love me.”

At the end of life, many people choose to tie up loose ends, to make sure nothing critically important is left unsaid to the people who matter to them most. They may feel it will help them die peacefully, knowing that no loved ones will have any doubts about their feelings.

“Those are opportunities for people to take stock and say, ‘I want to be more intentional about how I want to relate to people in my life,’” says Dr. Jessica Zitter, author of Extreme Measures: Finding a Better Path to the End of Life and an attending physician in critical-care and palliative care medicine at Highland Hospital in Oakland, Calif. “Death should really be seen as the last opportunity that you have to make amends and clean things up before you’re in the next world, wherever that might be.”

A New Dynamic

The end-of-life period can spark honest, soul-baring conversations that let people grow together emotionally while reminiscing, apologizing, forgiving, thanking or recognizing the efforts of their most cherished relatives and friends. Such talks can be especially meaningful if they’re initiated by someone who doesn’t usually talk about his or her feelings.

“These conversations are refreshing and calming to the souls of all who engage,” says Hattie Bryant, author of I’ll Have It My Way: Taking Control of End-of-Life Decisions. “If the dying person says words that the loved ones around are not used to hearing, it can open up a new and deeper path.”

Recognize the Moment

Sometimes palliative care physicians will help their patients with life-threatening conditions facilitate these conversations, steering them in directions that can bridge differences, highlight commonalities and allow people to grow closer. It’s ideal to have these conversations during the final weeks or months of life rather than waiting until the last possible moment.

“We always think we are going to have more time than we do,” says Zitter, who appeared in the Academy Award-nominated short documentary Extremis, about end-of-life decisions and conversations. “I see so many patients who get caught off-guard by those final days, to the point where something happens, they deteriorate; they can’t speak anymore; they aren’t alert. You don’t want to wait until those final days because it may be too late by then.”

The Start of an End-of-Life Discussion

When someone at the end of life opens up about his or her feelings, it can initiate an emotional conversation, with everyone sharing perspectives to gain a greater understanding of each other’s feelings. And if one person says “I love you,” the other person may return the sentiment, which brings greater depth to the relationship. The further the talks go, the greater the intimacy of the relationship may increase.

“I’ve seen it go any number of ways,” Zitter says. “A dialogue. One-sided. Over the phone — for people who aren’t going to have the chance to see each other again.”

Staying on Topic

Some terminally-ill patients want to have emotional conversations but can’t get the words out because their relatives cut them off.

“A lot of people say, ‘Every time I want to talk to my kids, they put their fingers in their ears and say, You’re not going to die’,” Zitter says. “When someone is coming to you with that feeling, you want to open up and listen and support, not deny the sentiments that are bringing them to you.”

It takes a certain amount of bravery to initiate these conversations. Not everyone is able to bare a soul this way — especially if someone is in denial about his or her diagnosis or prognosis. So honor your loved one by listening.

“The problem is: So many in America today don’t have these discussions, as they are too busy thinking they are going to be cured,” Bryant says. “Our goal should be not to die fighting a disease but to die loving people.”

Nearly 10 years after his mother’s death, Sernovitz is still awed by the meaningful conversation he had with his mom when she sang about her feelings.

“It was such a powerful moment,” Sernovitz says. “We have to really pay attention to what people say because we never know what messages they’re trying to send us.”

Complete Article HERE!

The Growing Acceptance of Medical Aid in Dying

More and more voters support options to allow the terminally ill to peacefully end their suffering. Politicians have little to fear from the issue.

By Kim Callinan  

While expanding and protecting health care was the number-one issue for voters on Nov. 6, what has gone unreported is that elected officials can now safely run on the issue of expanding and protecting end-of-life care options. For decades, lawmakers feared that sponsoring medical aid-in-dying bills that would allow terminally ill adults to have the option to peacefully end their suffering would harm their chances of getting re-elected. This year’s elections proved those concerns false.

Nearly all of the lead sponsors of bills in 28 states to authorize medical aid in dying in 2017 and 2018 who ran for re-election won (13 out of 14 state senators and 49 out of 53 state representatives). Voters also elected or re-elected at least five governors who publicly supported medical aid in dying: David Ige in Hawaii, Gavin Newsom in California, J.B. Pritzker in Illinois, Gretchen Whitmer in Michigan and Michelle Lujan Grisham in New Mexico. (Grisham’s opponent, Steve Peace, vehemently opposed medical aid in dying.)

In addition, Congressman Keith Rothfus of Pennsylvania, a sponsor of a failed resolution to overturn Washington, D.C.’s Death with Dignity Act and another House resolution condemning medical aid-in-dying laws nationwide that garnered only 13 co-sponsors, was defeated for re-election.

None of this should be particularly surprising. A majority of voters embraced this issue long before many elected officials and political candidates did — since 1996, according to Gallup’s annual polling; its 2017 poll shows that 73 percent of Americans support medical aid in dying, including 81 percent of Democrats and Democratic-leaning independents and 67 percent of Republicans and Republican-leading independents. In short, medical aid in dying is a rare bipartisan/nonpartisan issue. Five GOP legislators are among sponsors or co-sponsors of bills allowing medical aid in dying.

This unusually strong, wide-ranging support explains why 29-year-old Brittany Maynard, who moved from California to Oregon in 2014 to access its medical aid-in-dying law, was able to capture the attention of the American public. Three weeks after her YouTube video went viral, generating international news coverage, a YouGov poll showed that 38 percent of American adults — 93 million people — had heard her story.

Inspired, in part, by Maynard’s advocacy, since 2015 California, Colorado, the District of Columbia and Hawaii have enacted medical aid-in-dying laws. Today, D.C. and seven states accounting for nearly one out of five Americans have the option of medical aid in dying.

This movement is picking up major momentum, particularly among the millions of baby boomers who have watched their parents die in needless suffering because they did not have the option of medical aid in dying.

In addition, we know that these laws improve care by prompting conversations between doctors and patients about all end-of-life options, including hospice and palliative care. Oregon’s 1994 Death with Dignity Act has helped spur the state to lead the nation in hospice enrollment.

This helps explain why a 2016 Medscape survey of physicians showed doctors supporting medical aid in dying by nearly a 2-to-1 margin, 57 percent to 29 percent, up from 46 percent support in 2010. Just last month, the American Academy of Family Physicians dropped its opposition to medical aid in dying and adopted a position of “engaged neutrality,” noting that “family physicians are well-positioned to … engage in creating change in the best interest of [their] patients.” Medical societies in D.C. and nine states have adopted similar positions, and the New York State Academy of Family Physicians has endorsed allowing medical aid in dying.

Perhaps the most important benefit of medical aid in dying is that it is transforming end-of-life care in the same way childbirth care was transformed decades ago. As more states implement medical aid-in-dying laws, more and more patients have a voice in how they live the final chapter of their lives and how they die. Just as obstetricians and gynecologists now ask women for their input about who they want in the birthing room and whether they want to receive medication, doctors in states where medical aid in dying is authorized now are engaging in similar conversations with terminally ill patients.

In time, we will live in a world where health care providers fully inform their terminally ill patients about the benefits and burdens of all available forms of treatment and where deciding to end suffering and allow for a peaceful death will be a widely accepted medical option. The sooner we get there, the better.

Complete Article HERE!

At a Death Cafe, Tea and Couscous Make Mortality Easier to Swallow

Let’s talk about death, baby.

Attendees gather around a table to talk death at Tagine.

by Abbey Perreault

On a brisk November night, Tagine, a Moroccan restaurant tucked away on a quiet side street near Times Square, is alive with conversation. Nearly 20 people pack in around two tables cluttered with heaping, communal plates of steaming couscous, chickpeas, and yellow lentils. People exchange stories, laughs, and soft wedges of bread dipped in bright green chermoula. Multi-colored disco lights dance across the walls, and the swell of conversation rises and falls against a soft pulse of music and noise from the bar. A young, blonde woman walks through the door and surveys the crowd.

“Is this the singles’ event?” she asks, pointing to the tables. I shake my head.

“Nope,” I tell her. “This is the Death Cafe.” She thanks me, brow furrowed, and heads to the back of the restaurant.

While it may seem strange for conversations about death to be conflated with courting, our group could easily be mistaken for speed daters. Relatively young, open, and inquisitive, my dining companions exude a curious energy, solid appetite, and hunger for good conversation. But, unlike the majority of small talk with strangers, dialogue here is all about death—from philosophical musings about post-death life to the physiological components of dying.

“When the body is dying there are lots of … secretions,” says Tanya, a nurse who works in the intensive care unit at a local hospital. “We sometimes give patients medicine to try to dry them out and stop them from gurgling.”

“Is that what they call the death rattle?” someone asks from across the table.

Those noises, we learn, arise once the dying person can no longer swallow or clear fluid from the throat, and often indicates that they’re within a day of passing. But as disturbing as it may sound, the death rattle typically doesn’t cause the individual pain or discomfort. We talk about the sounds of death, and how to attempt to interpret them, sipping mint tea from delicate, warm glasses. “Having to take care of somebody who’s dying, and their family … it can be a lot. I want to talk about it with my husband, but I don’t want to fatigue him with it,” says Tanya. “But I think about it all the time.” It can be months, even years, she says, before she stops thinking about a patient who has passed away under her watch.

But not all Death Cafe diners come from professions that deal with death. According to Nancy Gershman, the facilitator of our cafe, attendees come from all walks of life, from college students with a philosophical curiosity about death to those who have witnessed something supernatural. Some people want to understand death better in order to prepare for their own. “I had this one 80-year-old who kept asking these roundabout questions,” recounts Gershman. “It turned out she wanted to know what dying was like.”

Hot tea helps the conversation flow.

Gershman, who has been facilitating this Death Cafe for the past three years, says there’s no agenda. Meetings often meander thematically, driven by the questions and stories people bring to the table. But she’s quick to remind me that, while the Death Cafe is a safe space to talk about loss, it’s not a support group. “When you lose someone, there’s a particular period right after it happens where you keep repeating, like a groove on a record,” she says. “We’re not here to stay stuck in that groove.”

Instead, Gershman says, it’s a place to speak openly and inquisitively about the end of life. Formally established in 2011, the original Death Cafe arose as the brainchild of the late founder, Jon Underwood, in his East London home. Inspired by Swiss sociologist Bernard Crettaz’s café mortel, he set out to create an intentional space dedicated to talking death in order help people “make the most of their (finite) lives.”

Strangers began gathering in Underwood’s London basement to sip tea, munch on cake, and casually discuss death and dying. Before dying unexpectedly from undiagnosed leukemia in 2017, Underwood and his mother created accessible guidelines and protocols so anyone could create Death Cafes within their own communities. Since then, more than 7,300 cafes have cropped up in over 60 countries—an indication that they address a deep-seated desire to understand death, one that’s been ignored, if not avoided.

After remaining relatively tight-lipped on the topic for centuries, those in the U.S. are more willingly peeking into the abyss—a cultural moment that’s been dubbed the “positive death movement.” From the growing demand for end of life doulas to the creation of apps that send daily reminders that you’re going to die, it’s apparent that more people are interested in confronting death.

“There’s a growing recognition that the way we’ve outsourced death to the medical profession and to funeral directors hasn’t done us any favors,” Underwood told the New York Times in 2013. By avoiding the topic until it happens, we’re left with all sorts of strange feelings about this universal life event. And yet, many of us prefer to keep it at a distance.
Part of this aversion, Gershman suggests, is that talking about it reminds us that it’s real. It shakes the comfortable illusions many of us cling to—that our bodies and brains are ours to control and keep. Sitting around the table, talking about how to financially plan for our funerals (to keep our partners and families from going into debt) can feel alien, even morbid, at first. But, through sips of mint tea, mouthfuls of warm lentils, and a few laughs, I’m reminded that it’s as necessary as making a financial plan before any big life event, such as going to college or getting married.

The strangeness of talking about death, Gershman says, goes beyond the mere fact that it’s been a longtime taboo topic in some cultures. There’s a lot of subject matter that’s taboo, she says, but death is different—largely because it’s inevitable. She compares it to the sex-positive movement in the U.S., where much of the silence surrounding sexuality has been stripped away to increase transparency and dismantle stigma. “People still have a choice when they’re talking about sex. You can either have sex zero times … or many times. But with death, you don’t have a choice. It’s going to happen, and it’s not going to be in your control.”

Nancy Gershman and a cafe attendee.

While making death less taboo will help us understand it and plan for it, it can’t help us prevent it. So planning for it is both frightening and necessary. But by ensuring tea and food are present, hosts of the cafes are able to make discussions of dying a little less scary. “There’s a superstition that if you talk about death, you invite it closer,” said Mr. Underwood. “But the consumption of food is a life-sustaining process. Cake normalizes things.”

My tablemates seem to agree that eating makes engaging with death easier. Tanya mentions that the pediatric unit has a giant bowl filled with candy, and it’s intended for the staff, not the patients. Digesting and processing death might be easier when accompanied by something sweet, something that nourishes us, something we understand to be routine. Like death, eating is something all living bodies simply have to do.

As the night progresses, one attendee whose husband passed away a few years ago tells me that, when she lost him, she lost her appetite, too. But in the past few years, her love for food, particularly dark chocolate, has returned forcefully. “Now, I eat it and I can’t stop,” she chuckles. She reaches into her purse, shuffling around a bit before pulling out three wrapped Hershey’s Dark Chocolate with Almonds nuggets, and hands one to each of us, smiling.

Laughter is common at the Death Cafe.

Even after years of facilitating Death Cafes, Gershman finds herself surprised by the feverish interest the cafes continue to garner. Month after month, newbies and returners come to talk death with strangers. A big part of the appeal, she ventures, is that death is great fodder for in-person conversation. “This is a subject that people can stay on, as opposed to babysitters and real estate,” says Gershman. “Death is such a rich topic that you could approach it in a million different ways and never be bored.”

Back at Tagine, conversation shifts from the life and death lessons learned from watching Golden Girls to the weirdness of grieving on social media. In a group of complete strangers, no one looks awkward or distracted, and no one is fiddling with a phone. “I really think that people are starved for interesting conversation at dinner,” laughs Gershman.

As I gulp down my piece of chocolate, another swell of laughter erupts from the table to my left. In comparison, the singles’ event in the back seems relatively lifeless. Gershman tells me that what I’ve seen and felt tonight is no anomaly.

“One of the waiters told me, ‘Whenever your group comes in, there’s always such great energy.’” she says. When she told him that this was a Death Cafe, a group focused on death and dying, he thought he had misheard her. “I think it’s because there’s a tremendous sense of relief. When you have relief, there’s more laughter.”

Complete Article HERE!

‘I was widowed at 23, young people need to talk about death’

Amy Molloy and husband, Eoghan

By Amy Molloy

‘They say you’ve got three months to live.” These were the words I spoke to my then-fiancé when I was 23 years old after learning that his cancer – malignant melanoma that spread to his liver, lungs, pancreas and brain – was likely to be fatal.

At the time, my only experience of “the end” was watching my parents disappear into a room where my grandparents were lying, and of seeing an empty rabbit hut at the end of our garden after the loss of a pet.

When I was 17 years old my father was paralysed from Hodgkins Lymphoma but, after a stem cell transplant, he defeated the odds and made a miraculous recovery. So, I had faith in the power of modern medicine over mortality.

However, not this time.

I was practically still a child when a doctor ushered me into a private room, whilst my soon-to-be husband, Eoghan, was in a chemotherapy session, and revealed his prognosis. I asked if I could be the one to tell him, and they readily agreed.

Perhaps, even doctors will do anything to avoid saying the T-word. Terminal.

In the next three months, I had a crash course in end-of-life conversation: the jargon, the euphemisms and the social awkwardness.

I froze with fear when I walked into the chemo ward and heard another patient ask my partner, “Have you ever thought about euthanasia?” But, in a way, that was better than the wall of silence.

After my husband died three weeks after our wedding day, even my closest friends evaporated or became stiff in my company. In the next few months, as I rebelled against my grief – drinking too much and becoming promiscuous – nobody dared challenge me or raise the topics I ached to discuss.

What on earth are you doing?

Do you really think this is helping you?

How does it feel to marry a man who is dying?

…Do you want to die too?

Do you know what to say when a friend’s loved one dies? Have you thought about the day your own parent, partner or best friend may no longer be visible? How would you discuss it, in a way that would be supportive, constructive, and even light-hearted?

If you don’t know the answer, you’re not alone.

A new study from the Royal College of Physicians in the UK has urged medical professionals to improve their bedside manner when it comes to discussing death, after identifying that “timely, honest conversations” about patients’ futures are not happening. However it’s not only doctors who need to become more comfortable with these conversations.

It’s been suggested that millennials are the generation most fearful of death, unlike our grandparents, raised through world wars, who learnt that life can be short. As medicine advances and life expectancy increases, we prefer to think of death as our “future self’s problem”.

But is postponing the inevitable increasing our terror of it?

As psychologists report a rise in young people presenting with anxiety linked to death, it’s time for honest, open, educational conversations about loss of life, and how it can look. Its not enough to be aware of Facebook’s ‘death policy’, warn experts.

“Death is still a certainty even if people are living longer,” says clinical psychologist Renee Mill from Sydney’s Anxiety Solutions CBT.

“When treating anxiety, exposure is what works and avoidance increases the problem. Talking about death or visiting a dying person will decrease your fear of death and make it easier to accept that it is a part of life. Every funeral we attend, no matter how hard, actually helps to reduce anxiety in this way too.”

And, it’s never too early to think about the end. Planning in life is important,” says Mill. “We plan our careers, we save, we want to buy property – end-of-life is another part we need to plan. It means we get our wishes fulfilled and gives guidance to our loved ones who otherwise have to pick up the pieces.”

In a good way, change is happening. Since 2017, the multimedia project We’re All Going to Die has encouraged people to embrace their immortality and use it to empower their lives, through educational films and festivals.

The award-winning podcast, GriefCast, hosted by comedian Cariad Lloyd whose father died when she was a teenager, sees entertainers speak with startling honesty – and surprising humour – about death, from the logistics of palliative care and funeral plans to the long-term effects of bereavement.

When we can talk openly about death, we may also increase our chances of reducing suicides. To help people to help each other, Lifeline offer an online course in QPR – the equivalent of CPR for people experiencing a suicidal crisis.

As part of the training – which only takes an hour and costs $10 – people are urged not to tiptoe around the conversations. Instead, be direct: “Do you feel like you want to die?”

In our social circles, we need to discuss worst-case-scenarios. Do you have a will? Do you have death insurance? Are you an organ donor? As an Australian immigrant living 16,000 kilometres from my parents, I always have enough money in my bank account for an emergency flight home. Because, nobody lives forever.

It’s confronting but it’s necessary

During my book tour, I cried on stage for the first time whilst discussing my journey from a 23-year-old widow to a 34-year-old wife and mother of two. Because, for the first time in a decade, I have reached a place where I can talk about my experience of death – and really be heard.

I shared the reason I light a candle in my bedroom every evening and say a prayer: help me to act from a place of love, not fear.

“If my dad’s cancer comes back, on that day I will light that candle,” I said, “If my husband, who is here with my newborn, dies and I am widowed again then I will light that candle to remind myself to act from a place of love.”

We need to talk about death to be active participants in the full spectrum of life: so we can decide who to be when a doctor pulls us into a private room, when we answer the phone to bad news, when we say goodbye for the last time.

We are so scared of death, we don’t discuss what an honour it is to watch someone die; to be present – really present – when someone takes their last breath, to lean in and breathe them in, to put your head on their chest as their heart stops beating and kiss their skin as it transforms.

I hope you all have that experience one day.

We are not meant to say that, but we should.

Complete Article HERE!

Death doulas can fill care gaps at the end of life

Palliative care nurses, social workers and people from the funeral industry are among those who work as death doulas.

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With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.

People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.

Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.

We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.

Defining the death doula

We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.

Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.

We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.

But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.

Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.

A death doula can provide additional support to family members acting as caregivers at the end of life.

Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.

In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.

There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.

How can doula care be formalised?

Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.

It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.

We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).

There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.

For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.

For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.

The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.

We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.

Complete Article HERE!