Tag: Death Talk

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What’s a Death Midwife? Inside the Alternative Death Care Movement

From funeral cooperatives to green burials, there’s a kinder, gentler, less expensive way to die.

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YES! illustration by Jennifer Luxton.

By Jennifer Luxton

Char Barrett walked into a quaint cafe in Seattle with business in mind.

Over the smell of coffee and freshly baked tarts, she was going to advise a client on how best to host a special event at her home, helping coordinate everything from the logistics of the ceremony, to how to dress the guest of honor. People might cry, they might laugh, and all attention would be on the person of the hour—only that person would never see, hear, or enjoy the festivities, because they would be dead.

001“People looked at me like I had two heads when I said, ‘Keep the body at home after the person dies,’” says Barrett, a Seattle-based funeral director and certified “death midwife.” “For families who want it, they should have the right to do it.”

Barrett has been practicing home funerals in the area since 2006 through her business, A Sacred Moment. In a home funeral service, the body is either brought back to the family from the place of death or stays at home if the person died there. The family then washes the body, in part to prepare it for viewing and in part as a ritual.

“It’s really the way we used to do it,” says Barrett.

To Barrett and many other professionals who are offering alternatives to the more status-oriented, profit-driven funeral industry, it’s time to rethink how we handle death. From consumer cooperatives that combat price gouging, to putting the power of choice back in the hands of the family, the city of Seattle has become a hub for alternative death care in the last two years, according to Barrett. The subculture of “deathxperts” want not only to empower their clients, but also potentially phase out their jobs altogether—a sort of death of the funeral director as we know it.

A History of Death

For the majority of human history, families handled arrangements for the deceased, from the time immediately after death, to burial or cremation. Until the advent of modern hospitals and health care at the turn of the last century, it was the norm for the old and sick to die at home surrounded by loved ones.

During the Civil War, embalming as a form of preservation found a foothold when Union soldier casualties needed to be transported from the sweltering South to mourning families in the North. Today, its pragmatic purpose is to temporarily stop decomposition for viewing and final goodbyes. However, the overwhelming majority of contemporary consumers don’t realize that, in most cases, it’s not legally required to bury a body, although special circumstances vary from state to state.

So why has probably every American funeral you’ve been to had an embalmed body in attendance?

As 20th century consumerism took hold and people were more likely to die in a hospital than at home, death receded from public consciousness. If a loved one were to die today, you would probably call and pay a funeral home to pick her up from wherever she took her last breath. They would wash her, embalm her, and dress her to your family’s liking. You would briefly visit her one last time at a mortuary or a chapel before she was either buried or burned. In all likelihood, her last bodily contact before disposition would be with a complete stranger.

In 1963, investigative journalist Jessica Mitford published “The American Way of Death,” an exposé of the country’s funeral-industrial complex, showing how it exploited the emotions of the living so it could up-sell unnecessary services and products, such as premium caskets and premier vaults. Federal Trade Commission regulations and consumer protections now prevent families from being swindled.

002Today, the funeral industry has become managed in part by aggregate companies. Mortuary giant Service Corporation International owns a large network of individually operated funeral homes and cemeteries, some of which exist on the same property as combination locations. If you imagine a standard funeral parlor and graveyard, you’re probably picturing an SCI-owned operation. Of the approximately 19,400 funeral homes in America, the publicly traded company owns about 2,300 homes, according to the National Funeral Director’s Association. Families and individuals privately own most of the rest.

“The reality is that if you can’t adapt to compete with SCI, you probably shouldn’t be in the market,” says Jeff Jorgenson, owner of Elemental Cremation and Burial, which prides itself in being Seattle’s “only green funeral home.” “But SCI is one of the best competitors you could ever hope for because they’re slow to change and they’re exceptionally resistant to anything progressive.”

Jorgenson started his business in 2012 with a special focus on carbon-neutral cremations and “green” embalming using eco-friendly preservatives. In every aspect of his operation, he works to be as environmentally minded as possible, an objective he sees lacking in most business models.

As SCI spent the 1960s through 1990s acquiring independent funeral homes to maximize profits, another organization was doing the exact opposite by forming a collective to prioritize consumer rights.

People’s Memorial Association is one of the nation’s only nonprofit organizations that pushes consumer freedom for end-of-life arrangements. Located in Seattle, the consumer membership-based group coordinates with 19 different death care providers across the state to offer fixed-price burial, cremation, and memorial services, as well as education and advocacy to encourage death care alternatives. Almost all of the funeral homes are privately owned and have a uniform price structure for PMA members, who contribute a one-time fee of $35. Barrett’s A Sacred Moment is one of PMA’s partners.

003“We negotiate contracts with the funeral homes so members walk in knowing exactly what they’re going to pay, and it’s usually a pretty significant discount from the usual prices,” says Nora Menkin, the managing funeral director of the Co-op Funeral Home. PMA founded it in 2007 when SCI decided to cancel arrangements with several of PMA’s partners. Now, PMA-contract homes offer full-service funerals for 65 percent less than the average local price, according to a 2014 price survey conducted by the PMA Education Fund.

“There’s no sales pressure, there’s no up-selling, and we make sure people get what they need,” says Menkin. “It’s about the consumer telling us what they want.”

Jorgenson’s Elemental Cremation and Burial works outside the umbrella of PMA’s service providers, but he still finds allies in Menkin and the Co-op Funeral Home.

“We’re in it to change an industry,” he says. “Just one of our voices out there is useless. There’s a kinder, gentler, less expensive way, and that’s what we’re all doing. It’s helping families in a new, more collaborative way.”

In Jorgenson’s opinion, you don’t even really need a funeral director.

“A funeral director is a wedding planner on a compressed time scale,” he says. “With the exception of the legality of filing a death certificate, a funeral director does the exact same things a wedding planner does: They make sure that the venue is available, that the flowers are ordered, the chaplain is there for the service, and that the guest of honor, be it the bride or the dead person, is there on time.”

In Washington state, some of the only legal requirements are preservation of the body 24 hours after death by way of embalming or refrigeration, obtaining a signed death certificate, and securing a permit for disposition of the deceased.

If the body will be kept at home for longer than 24 hours, preservation can be achieved by putting the body on dry ice for the duration of the viewing. Once the family has had enough time with the person, he or she will be removed for final disposition, which includes burial, cremation, or scientific donation.

“A funeral director that is truly in earnest with the services they’re providing these families would have the courage to say that,” says Barrett. “A family can do this themselves. They don’t need a licensed funeral director, especially in the 41 states where legally a family is able to sign their own death certificate.”

Even families who still want the guidance of a professional shouldn’t feel powerless.

“Too many people go to funeral homes and just want to be told what to do, because they haven’t been through it or they don’t want to think about it. That gives the funeral homes way more power than they really deserve,” says Menkin.

Ideally, a funeral home should educate consumers and encourage them to make informed decisions, she says, ultimately just acting as an agent to carry out their wishes.

The Process

For almost every modern funeral home preparation procedure, there is a more sustainable alternative. Dry ice can offset the need for embalming for brief viewing or shipping purposes. In instances where some form of embalming is necessary, such as a violently traumatic death, a mix of essential oils can replace the toxic mix of tinted formaldehyde. Even in the case of burial, biodegradable shrouds can eliminate the need for wood and metal caskets built, in theory, to last forever.

The distinctions apply to cemeteries too, which are divided into several camps as outlined by the Green Burial Council, the industry authority on sustainability. It assigns funeral homes, cemeteries, and suppliers a rating based on strict environmental impact standards, which scrutinize everything from embalming practices to casket material.

004There are traditional cemeteries with standard graves, monuments, mausoleums, and often water-intensive grass landscaping. The next step up are hybrid cemeteries, which still may have regular plots, but also offer burial options that don’t require concrete vaults, embalming, or standard caskets. Natural burial grounds, the middle rank, prohibit the use of vaults, traditional embalming techniques, and burial containers that aren’t made from natural or plant-derived materials; landscaping must incorporate native plants to harmonize with the local ecosystem, conserve energy, and minimize waste. Premier green burial occurs on conservation burial grounds, which in addition to meeting all of the above requirements, requires partnership with an established conservation organization and be dedicated to long-term environmental stewardship.

Natural and conservation burial grounds must limit the use and visibility of memorials and headstones so as to preserve the native visual landscape as much as possible. Some properties have switched to GPS-based plot markers—visitors wouldn’t know they’re in the middle of a cemetery unless they were looking for it.

As consumers become more comfortable with taking charge of their dead, there will be more room to introduce new methods of body disposition, such as alkaline hydrolodis, a type of liquid cremation, and body composting. Earlier this year, supporters successfully funded a Kickstarter campaign to start research on the Urban Death Project, which aims to turn decomposing bodies into nutrient-rich soil. According to Jorgenson, sustainable burial practices are still part of a boutique market, though that doesn’t change his bottom line.

“Death is difficult. People don’t really want to experiment with mom,” he says. “But I count myself fortunate to be out there as one of the people that offers these alternatives, should someone want them.”

“The co-op movement is bigger in other countries,” says Menkin, who attended the 2014 International Summit of Funeral Cooperatives in Quebec. “Canada has a large network of funeral cooperatives, but it’s a bit more like a traditional funeral industry, just with a different business model. They’re not about alternative forms of disposition or changing the norm. We’re kind of writing the book on this one.”

Eventually, those conversations may become commonplace.

“Now when I mention home funerals to people, they don’t think anything of it,” says Barrett. To her, the time has come for people to think outside the box—literally.

Complete Article HERE!

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Zen and the Art of Dying Well

By Courtney E. Martin
 
 

What is the “right” way to die? We’re experiencing a zeitgeist moment about that. “Being Mortal: Medicine and What Matters in the End,” by Atul Gawande, is a best-selling book. Videos by Brittany Maynard, a 29-year-old who wanted to die in a way of her own choosing, went viral last year. And in more than 20 countries, thousands of people have dined and discussed dying through a project called “Death Over Dinner.”

In fact, we can’t afford not to have this conversation. According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings. Economists call this a “cure at all cost” attitude. And in the next 25 years, longer life spans and the aging of baby boomers are expected to double the number of Americans 65 years or older, to about 72 million.

What if the most promising way to fix the system is to actually do less for the dying?

That’s what the not-for-profit Zen Hospice Project has been trying to prove through a fascinating, small-scale experiment in San Francisco’s Hayes Valley neighborhood.

Katherine Nigel
Credit Wendy MacNaughton, the 2015 artist-in-residence at the Zen Hospice Project

The project, which had its origins in the San Francisco Zen Center in 1987, takes the typical hospice approach of caring, rather than curing, and puts an East Asian sensibility on it. In line with Zen Buddhist philosophy, it trains its volunteers, nurses and even cooks to care mindfully. That might mean sitting in meditative silence at the bedside of someone who is dying. Or focusing on the senses as the most direct connection to the present moment of life — cooking a fragrant meal with fresh ingredients, giving a tender hand massage, singing a favorite song.

For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists.

Walk through the front door of the Guest House, as the project’s rambling Victorian home is known, and smell the strong coffee brewing or the homemade chocolate cookies cooling in the kitchen. The cookies aren’t just a nicety. According to Dr. B.J. Miller, the organization’s executive director, piquing the senses is a key strategy to dying well. “No future necessary when you’re in the moment,” he says.

Head up the creaky stairs, and you’ll meet Katherine Nigel, 99 years old, who sits in a big, plush armchair wrapped in a quilt she made. Next to her is a portable keyboard with sheet music propped on it. “I don’t like an audience,” Nigel informs me when I ask how often she plays.

She admits that she painted many of the broad-stroked portraits that hang on the walls and lets me thumb through a book that her daughter made of her bright-hued crochet handiwork; no dumpy browns or washed out greens for this Renaissance woman.

When Jolene Scarella, the head of nursing at Zen Hospice Project, first met Nigel at a traditional assisted living facility, she was in a very different state. When she wasn’t sleeping, she was hallucinating and in severe, hunger-obliterating pain. The assisted living staff had chalked up her discomfort to the inevitable scourge of dying.

But upon moving to the Guest House, Nigel seemed to come back to life (not to be confused with not dying; she’s still doing that). Scarella figured out that Nigel’s hallucinations were being caused by a pain medication, and switched her regimen. Scarella also learned that Nigel was an artist of many trades, and slowly figured out how to re-introduce arts into her life as they managed her arthritic aches. (Nigel isn’t the only artist in the house; many guests do some kind of artwork in their final days, volunteer musicians come through, and there is an artist-in-residence program.)

In the United States, according to the National Hospice and Palliative Care Organization, 44.6 percent of all deaths now take place under the care of a hospice program. People are technically “hospice eligible” when their health care provider determines that they are likely to die in six months, whether from a terminal condition or simply “a failure to thrive,” the technical term for complications because of old age.

But researchers have found that 40 percent of those receiving hospice care have been admitted after a stay in an intensive-care unit, meaning they will spend only a few days in palliative care before dying — not enough time to take full advantage of the technique’s soothing possibilities.

In contrast with the national figures, the average stay at the Guest House is three weeks.

Popular belief has long favored dying at home, but that experience can be overwhelming for the people who love the terminal patient. Caring for him or her can be far more challenging than many people anticipate, especially if the one doing the lion’s share of the caring is elderly or sick as well. Too often, family members and friends are left managing the special equipment and medication regimens rather than actually being with their loved one.

Beyond that, many people who technically die at home have still spent many of their final moments in hospitals. One recent study found that people typically moved from one care setting to another three times or more in the last 90 days of life, with 14 percent of them facing a move in the last three days.

Credit Wendy MacNaughton, the 2015 artist-in-residence at the Zen Hospice Project

In the Zen Hospice model, those final three months are a precious window of time, when people with a terminal condition shouldn’t be chasing more time, but reveling in what their remaining time can offer — for example, the sound of a favorite Yiddish tune, or the wetness of a beloved dog’s kiss, or even the feeling of smoke filling their lungs. Yes, residents are allowed to smoke — outdoors — if they wish.

The common threads in this approach are more sensory experience, and less spending. It costs the Zen Hospice Project about $750 a day to care for a resident. If that same patient were in a hospital, he or she would likely incur at least five times that much expense.

Historically, neither private health insurance nor Medicare covers the cost of residential hospice care. One result is that when people don’t have a place to go or a care plan that’s realistic for their situation, they languish in their hospital bed, taking up a resource that the hospital cannot be reimbursed for.

Unlike home hospice services, residential hospice costs are not covered by Medicare or other insurance programs. And while reimbursement from long-term care insurance is possible, it is rare and riddled with restrictions

In reaction to those realities, the rate for room and board at the Guest House is based on a sliding scale and an evaluation by the Zen Hospice Project’s admissions team.

The Guest House has a team of nurses who cover shifts 24 hours a day, but the entire orientation is around as little intervention — and as much relationship and pleasure — as possible. Research supports this approach: One study, funded by the National Institute of Mental Health and the National Cancer Institute, found that among 627 patients with advanced cancer, more frank conversations with health care providers and fewer medical interventions coincided with reports of better experiences of their final days.

The Zen Hospice Project is small — there are only six beds in the house, three of them funded by the University of California San Francisco Medical Center (which the project says saves it hundreds of thousands of dollars per bed, per year). But the project also collaborates with Laguna Honda Hospital in San Francisco; its hospice ward houses up to 60 people in a communal, pleasure-centered way. Both places draw on the more than 100 volunteers that Zen Hospice Project has trained over the years.

Volunteers serve one five-hour shift a week (there are three shifts a day), with one hour of overlap between shifts, providing time for group meetings that include 10 minutes of meditation, followed by check-ins. Those wrapping up their shifts reflect on how everything went, and those coming in are told to openly share their current state of mind.

What might seem beside the point is actually crucial when being with “residents,” as the patients are called, explained Roy Remer, the Director of Guest House Facility and Volunteer Programs. “We train our volunteers to cultivate awareness. That means slowing down and creating a heightened sensitivity to everything the residents might be experiencing, but it also means being aware of your own emotional state as you enter a room.”

Many people who volunteer in traditional hospices, according to Remer, can come with an unspoken expectation. Some have romantic notions about the kinds of bonds they’re going to form with dying people, the kind of wisdom they might glean. Some are trying to “correct” regrets about not spending enough time with their own family members as they died. All of that can make the interaction more about the volunteer than about the person dying. Remer believes that good training in mindfulness can help people focus instead on the present moment, and on the person in the bed.

Zen Hospice Project is aimed at serving those with just six months to live (though there is no official maximum).

Derrick Guerra, right, a nurse at Zen Hospice Project, spoke with a resident outside.
Derrick Guerra, right, a nurse at Zen Hospice Project, spoke with a resident outside.Credit Wendy MacNaughton, the 2015 artist-in-residence at the Zen Hospice Project

But here’s the rub: They pay such scrupulous attention to the senses that keep people awake and engaged with the last moments of their lives, that they often end up having more of them. Take Nigel: She has now been a resident for five months. “They treat me too nice here,” she tells me, deadpan.

“Essentially we’re exposing another gap in the system,” Scarella explains. “There just aren’t a lot of places that are built for someone like Katherine — who is dying, but is actually thriving. Where do we send her next?” A skilled nursing facility would be ideal, but there is a shortage of those, too, and it would be hard to find one that would prioritize Nigel’s artistry in the same way.

That’s why the project’s goal is not to increase the number of beds at the Guest House or to buy more houses, but to spread the idea of dying in this way. To that end, Zen Hospice Project is working with a design firm, IDEO, to gestate “a kind of movement,” according to Miller, to rethink the entire ecosystem that currently serves someone like Nigel in her final months. “We’re shifting from a disease-centered to a person-centered model in health care,” he says. “If seen through, this shift would revolutionize how care is delivered and how illness and suffering and dying are experienced.”

For those who do die at Zen Hospice Project (the whole point, of course), the send-off prioritizes the senses as much as the months that led up to it. The body is brought outside to the maple tree on the back porch and sprinkled with rose petals before a crowd of those who care, from the doctor to the plumber. People say a few words if they feel moved.

Or they just sit in silence for a few minutes — a sacred pause before life marches on.

Complete Article HERE!

 

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Right-to-die advocate dies without reprieve: San Mateo resident Jennifer Glass fought for new legislation

By Samantha Weigel

Just months after urging the California Legislature to empower her to cease her suffering on her own terms as she battled an aggressive form of cancer, Jennifer Glass died in her San Mateo home Tuesday night.

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Jennifer Glass died in her San Mateo home Tuesday night after battling stage 4 lung cancer. Glass had sought changes to state legislation so she could have controlled how she died.

Despite her condition, the 52-year-old was an active advocate for Senate Bill 128: End of Life Option Act and her supporters remain saddened the legislation, which could have allowed Glass to avoid more suffering, stagnated in the Assembly.

A former communications specialist who took charge of high-power campaigns such as for Facebook and Oracle, Glass turned her attention to the state’s right-to-die initiative after being diagnosed with stage 4 lung cancer in 2012, just four months after marrying her husband Harlan Seymour.

A national spokeswoman for the movement who worked closely with the advocacy group Compassion and Choices, Glass died while California lawmakers stalled on a right-to-die law. SB 128 would give patients who are terminally ill the right to terminate their own life after completing a series of checks and balances with doctors and mental health professionals.

Glass fought to extend her life through chemotherapy as well as radiation and even did better for a time; however, a CT scan taken in June of this year showed her cancer had spread to her lungs, liver, abdomen, pelvis and brain. Unable to tolerate chemo, she decided to die at home, Seymour said.

As her lungs filled with fluid making breathing difficult and her pain increased, Glass opted to undergo palliative sedation — a process in which she is medicated into a coma then nutrition and fluids are withheld until the patient dies from the disease or dehydration.

It took her more than five days to die, a disheartening time marked by her awaking from the coma in a panic one evening, Seymour said.

“By the time she started palliative sedation, she was in so much pain, she really couldn’t say goodbye to people. If there was an end-of-life option, she could have started earlier, even just one day, she could have said goodbye to her loved ones and had a quiet death,” Seymour said. “Palliative sedation is really just a slow motion version of what the end-of-life option offers. Instead of a seven-day, dragged-out death in a coma, it’s a death that could just last a few hours and allows for a better ending with one’s family. … It would have been a great comfort to her if she had the choice to end her life in a faster manner. She would have suffered less.”

Had SB 128 been enacted, Glass would have been able to obtain aid in dying through prescription medication that she could have taken at home allowing her to die in her sleep, sometimes in as little as 30 minutes — as in the case of Brittany Maynard, a 29-year-old Bay Area resident who moved to Oregon to exercise her right to die, according to a press release from Compassion and Choices.

Opposition

Opponents say SB 128 could have unintended consequences as insurance companies looking to cut costs or those without good access to health care may be more inclined to use these types of laws.

“The concerns of our coalition, there are many but primarily, is that you cannot base broad public policy decisions on one case, you have to look at all of California and not just a single individual or a narrow group of individuals,” said Tim Rosales, spokesman with the Californians Against Assisted Suicide. “Consider how these policies would impact everyone in a state as diverse as California; particularly in parts of California where people do not have access to the types of health care where they can get second and third opinions or access to better treatment.”

Rosales noted many states across the country turned down legislation dealing with the issue this year and instead, California should focus on making hospice and palliative sedation more accessible.

Another option

While opponents often cite palliative sedation as a suitable alternative, representatives from Compassion and Choices argue Glass’ case proves it didn’t allow her to die peacefully.

“With Jennifer, it obviously did not work as effectively. … It’s really important for people to understand that in reality, palliative sedation does not work for everyone and those folks need another option. Medical aid in dying is that option,” said Toni Broaddus, campaign director for Compassion and Choices California. “In that sense, this legislation is really somewhat neutral because it doesn’t tell anyone what they have to do at the end of their life, but it says you can have all the medically possible options out there at the end of life. Public policy, and this is good public policy, I think is for the state not to be telling people they can’t have access to a service or prescription that many other states are using.”

Glass’ family agreed adding palliative sedation is not as dignified and can be much more painful for both the patient and their loved ones. Glass’ sister Mavis Prall noted it was not the quick nor peaceful option she was fighting for.

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down,” Prall said in the press release. “Members of the California Legislature should be aware that their inaction has painful consequences. I urge them to pass the End of Life Option Act this year.”

Glass publicly spoke in support of SB 128, co-authored by state Sen. Bill Monning, D-Carmel, as she fought to provide those who are suffering with a choice.

‘Keep fighting’

Glass had been scheduled to testify in the Assembly’s Committee on Health July 7 but the hearing was canceled and has yet to be rescheduled. Broaddus acknowledged while SB 128 easily passed the Senate, there weren’t enough votes in the Assembly. Yet as Glass requested, they will continue to advocate for the bill to be adopted this year, Broaddus said.

“Her message to us had been ‘keep fighting, don’t stop fighting,’” Broaddus said. “This issue is very very personal for people. Despite what it may appear, it does not break down party lines or ideological lines. It’s something people look at very personally based on their own experience.”

Sen. Monning expressed his condolences while noting SB 128 is still in action.

“My heart goes out to her family. We will continue to pursue Jennifer’s commitment to establish the right of terminally ill patients to have all end-of-life options made available to them,” Monning wrote in a press release.

Legacy

Seymour said he would continue to support the right-to-die movement that could have spared his wife from further suffering and prefers she be remembered as a strong, loving and logical woman.

“Jennifer was very worried about suffering greatly in the process of her death, and she was concerned about what it would do to her loved ones. She didn’t want to die drowning in her own lung fluid and that’s essentially how she died,” Seymour said. “If you allow palliative sedation, there’s no reason not to allow a faster, less traumatic, less painful way of going as well. … I really want to see Jennifer’s legacy and her dream of having an end-of-life option come true.”
Complete Article HERE!

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Cancer Death & Dying: I Don’t Want to Die and I Don’t Want It to Hurt

Fear of death and dying is explored by a two-time cancer survivor. There are benefits to taking a moment to look at these fears today.

By Barbara Tako

The fear of death and painful dying is in my face, for me and I suspect for other cancer survivors too. It is natural and normal to have these concerns, but rather than avoid death worries, it may be reasonable to take a deep breath and face those thoughts a bit. Maybe the fear can be reduced if we contemplate and explore death for a moment.Barbara Tako

I don’t want to die. Who wants to be separated by death from their loved ones? I also don’t want to go through chemotherapy again. I don’t want to lose my hair again. I don’t want to be set apart from the people I care about. I don’t want to suffer again. I don’t want the “long goodbye.”  I also visualize the long goodbye as a lingering and painful death with my loved ones nearby watching me be upset. Who wants that? How can we cope?

When I talk to other cancer survivors, they often tell me that they, like me, are more afraid and worried about a painful lingering death process than death itself. I decided to talk to some palliative and hospice care people, as well as my psychotherapist. Let’s look these huge issues right in the face.

Dealing with the possibility of death or a long painful death directly with honesty has the potential to help the coping process. Death is terribly huge and frightening. Our culture likes to bury the reality of death and, for the most part, much in the way of discussion or preparing for death. Why not work on preparing instead?

The medical professionals that deal daily with these situations say there are now a lot of excellent drugs out there to help people manage end-of-life pain. They also say, most of the time, they can keep a dying cancer patient pretty comfortable. I felt calmed to hear that and I still don’t want to die. No one wants to die. The reality is that death will happen to everyone, sooner or later.

The psychotherapist I spoke to approached it differently. She said people facing end of life who haven’t reflected before on their own death might feel angry and cheated or afraid of the dying process. To me that makes sense. Who wouldn’t be angry and bitter to have their life cut short by cancer? Yet, she said people facing death in their eighties and beyond can feel this way too.

She said sometimes people have unresolved relationships and issues. I saw a clue in her words. The point of contemplating death is to live deeply now and make conscious choices about how you want to try to approach your death. I don’t want to be jealous, angry or afraid at the end. Those are awful feelings. What to do? Face those issues and feelings today, resolve my cancer anger and fear, deal with it, and cope with it now. Live my life deeply, now.

I have resolved to try to do better at my relationships where possible—to be more honest and loving with the people around me. I won’t always succeed. I am human, but thinking about these end-of-life worries motivates me to try harder. I don’t want to die bitter and angry about “unfinished business.” No one probably feels everything is “done,” especially if death comes sooner rather than later, but why not work on death today?

What else? I have decided to actively practice gratitude. I have had some awesome life experiences. I have a very nice life compared with many people in this huge world. I have so much to be grateful for in spite of having two cancers, and I will try to remember that and to focus on that. I will try to slow my life down where I can, prioritize better, and live deliberately. This fall I am going to explore yoga and meditation. Meditation helps slow my life and my racing thoughts down. It helps me to live in the moment and to live more pleasurably, deliberately, and deeply. I will also continue to add to my bucket list and try to work on those items too.

Finally, I will try to keep the faith. Whatever your belief system is, try to hang onto it, grow it, and receive comfort from it. That means, for me, I need to practice my faith on a daily basis. I read. I pray. I talk to God (sometimes I yell or rant). I try to create stillness inside me where sometimes I hear answers in the quiet of my soul.

In truth, none of these thoughts are a complete answer. There are books and books written about death and dying. Right now, I am grateful that I am not facing end-of-life issues today. I don’t truly know what that feels like. It does help me, though, to spend some time looking at these worries and fears in the face and to spend some time thinking about my plan.

Facing uncertainty with a plan, for me, is better than facing it with nothing at all. The best plan would be no pain and no death, but that is not how our world works. I know this is probably a naïve approach when looked at by people with advanced cancer. It is the best I can do with my hopes for all of us, and my (gratefully) limited perspective, and my lingering fear of recurrence and what recurrence might mean. What are your plans? What works for you?
Complete Article HERE!

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After surviving the Holocaust, letting go of life is complex

By Melissa Apter

A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland. (Jeff J. Mitchell/Getty Images)
A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland.

Jewish hospice chaplains confront the emotional and medical complexities of death and dying every day, but Holocaust survivors present special challenges.

Rabbi E.B. “Bunny” Freedman, director of the Jewish Hospice and Chaplaincy Network, said that chaplains are increasingly being called on to provide spiritual support to survivors and their families.

“There are a lot of complex issues,” said Freedman, who has worked in end of life chaplaincy for 23 years. “One of them is making the decision of unhooking hydration – much more complex for a Holocaust family. The idea of not providing nutrition is crossing a sacred or not understood emotional line.”

Survivor guilt and mixed feelings at the prospect that they may “meet their relatives on the other side” commonly surface, he said.

Rabbi Charles Rudansky, director of Jewish clinical services at Metropolitan Jewish Health System’s hospice in New York, reported similar experiences with Holocaust survivors he had counseled.

“Last time they saw their loved ones was hellish, hellish, hellish, and now they’re crossing that bridge,” said Rudansky.

Some Holocaust survivors are apprehensive at that prospect, he said, while others are “uplifted.” A usually talkative person may fall silent, while a quiet person may suddenly have a lot to say.

“I’ve been called in by Holocaust survivors who only want to speak with me so some human ears will have heard their plight,” said Freedman.

Jan Kellough, a counselor with Sivitz Jewish Hospice and Palliative Care in Pittsburgh, said she encourages, but never pushes, survivors to share their stories. While it can be therapeutic for some survivors to talk about the Holocaust, she said, it is problematic for others.

Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015. (Courtesy: Dr. Gary Applebaum)
Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015.

For some survivors, “there’s an attitude of not wanting to give up, there’s a strong will to fight and survive,” said Kellough.

Children and grandchildren of survivors can also struggle to cope with their loved ones’ terminal illness, said Rudansky.

He said such people tell the hospice staff, “’My grandfather, my father survived Auschwitz. You can’t tell me they can’t survive this!’ They have great difficulty in wrapping their heads around this is different — this is nature.”

That difficulty can be compounded by the fact that children of survivors may not have had much contact with death in their lives, said Rabbi David Rose, a hospice chaplain with the Jewish Social Service Agency in Rockville, Maryland.

Because so many of their family members were wiped out in the Holocaust, children of survivors may be less likely to have experienced the death of a grandparent or aunt or uncle.

“That’s one of the benefits of hospice. We work with them and their families to help them accept their diagnosis,” said Kellough.

Hospice offers families pre-bereavement counseling, 13-months of aftercare and access to preferred clergy.

Special sensitivity is paid to spouses who are also survivors.

“Survivor couples, particularly if they met before the war or just after the war are generally exceptionally protective of each other,” said Rose. “A few different couples come to mind – every time I visited, the partner was sitting right next to their spouse, holding hands the whole visit.”

Freedman underscored that chaplains are trained not to impose their religious ideas on families, but rather to listen to the patient and family’s wishes.

“I tell the people I train that if you’re doing more [than] 30 percent [of the] talking in the early stages of the relationship, then you’re doing it wrong,” said Freedman.

“Seventy percent of communication is coming from your ears, your eyes, your smile — not your talking. Rabbis tend to be loquacious, we’re talkative,” he said. “But when I’m with a family, I am an open book for them to write on.”

Though the work is emotionally demanding, Freedman said, “Helping people through natural death and dying is one of the most rewarding things people can do.”

 
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Feather Death Crowns: Appalachian Omens of Death

In Appalachian culture, a bizarre phenomenon of feather crowns found in the pillows of sick people became known as an omen of death.

Vintage feather death crown photo by Lori Kimball
Feather death crown dating somewhere between the 1800s and the 1930s.

By J. Nathan Couch

Feather pillows are about as rare the Loch Ness Monster, but once upon a time they were as common as could be.

Long ago, the people of Appalachia began to notice a peculiar phenomenon: odd crownlike masses in the pillows of the seriously ill or recently deceased.

These objects became known as Death Crowns (or less-commonly, angel crowns). Death Crowns are usually elaborate, interlocking designs that resemble a disc or crown. The quills always point inward, and though rare, are only found in the feather pillows of the seriously ill or recently deceased.

Because of the isolated, rural nature of the area, the phenomenon appears to be unique to Appalachia, or locations where some of these mountain folk migrated, such as Missouri, Indiana, and Ohio. But it’s almost exclusively a lost-belief now that most people have switched out their feather pillows for comfort foam or synthetic fibers.

I was fortunate enough to overhear a death crown story in my youth, otherwise I’d likely be unaware such a concept ever existed. My family has lived in Hall County, Georgia for generations, just miles from the foothills of the Blue Ridge Mountains.

My great aunt paid us a visit when I was maybe 5 years old. She started talking about the recent death of her elderly father. He’d been killed while walking around a bus he’d just exited. A car sped by without caution, striking the old man. She was elected the sorrowful chore of sorting through her father’s belongings. As she lifted her father’s ancient feather pillow she felt something solid inside. She started to throw the pillow away, but something compelled her to open it up. She reached inside and probed with her fingers in search of what she had felt. To her astonishment, she pulled out an intricately woven wreath of feathers, roughly the size of a bird’s nest. She took this has a sign her father had gone to heaven.

After several minutes of convincing, she persuaded me to go play. After a while, I forgot about the whole thing—until bed of course. I recall squeezing and kneading my pillow in search of anything that might remotely feel like a “death wreath.” I didn’t. Finally, I fell asleep.

A vintage death crown with post-mortem photo and funeral card
Vintage death crown in a bell jar with post-mortem photo and funeral card.

These odd formations are usually interpreted as a heavenly sign, but skeptics believe that the movements of a dying person—tossing and turning combined with fever sweats–could cause these objects to take form.

If you are one of the few that still sleeps on feather pillow, do not lose all hope if you find a Death Crown in your pillow tonight. One old wives’ tale claims that if you break these wreaths up you could prevent the death of the person the pillow belongs to.

A collection of these oddities can be found at the Museum of Appalachia in Clinton, Tennessee.

Complete Article HERE!

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Hospice veterinarian writes how dogs helped her, her mother through challenges of life, death

By SUE MANNING

Dr. Jessica Vogelsang, a hospice veterinarian for Paws Into Grace and the author of All Dogs Go To Kevin: Everything Three Dogs Taught Me, poses for a photo with Brody, her golden retriever Tuesday, July 28, 2015, in San Diego. Dogs provide comfort not just in death, but in other difficult times, whether it’s depression, job loss or a move across country. Dogs know when people are dying or grieving through body language cues, smells only they can detect and other ways not yet known, experts say.

For those who are dying, it’s clear why all dogs go to heaven.

They provide comfort not just in death, but in other difficult times, whether it’s depression, job loss or a move across country. Dogs know when people are dying or grieving through body language cues, smells only they can detect and other ways not yet known, experts say.

As a hospice veterinarian, Jessica Vogelsang knows how much “being there” can mean to struggling people or pets. She’s director of Paws Into Grace in Southern California, a group of vets who provide end-of-life care and euthanasia for pets at home.

The San Diego vet finished her first book, “All Dogs Go to Kevin: Everything Three Dogs Taught Me (That I Didn’t Learn in Veterinary School),” just before learning her mom, Patricia Marzec, had an inoperable brain tumor. The title of the memoir published last month refers to what Vogelsang’s toddler heard when he was told all dogs go to heaven.

Her parents moved in so Marzec could enjoy her last months with family, and Vogelsang’s golden retriever, Brody, picked up on the changes. He always jumped on her parents but stopped when they arrived in April.

“He knew Mom was sick. He was with her 24-7,” Vogelsang said. “He was trying not to be too obvious, but Dad was on one side and he was on the other.”

Brody would lay by Marzec’s feet or rest his head on her lap when he sensed she was sad. He wedged in next to her when hospice workers came by, ignoring her shaking hand as she patted his head, Vogelsang said.

“He is still my dog, but he knew when they came they needed him more than I did,” she said.

Dogs know to comfort people by sniffing out some cancers, such as on the breath of a lung cancer patient, said Dr. Bonnie Beaver, professor at Texas A&M University’s College of Veterinary Medicine and executive director of the American College of Veterinary Behaviorists.

But most often, it’s about body language.

“They recognize fragile, slumped over, not moving as well,” Beaver said. “That’s how they read each other. … They are great at it, and we are not.”

Some rest homes and hospices that have live-in dogs to comfort patients even use a dog’s behavior — such as who the animal chooses to sleep with — as a sign to tell relatives to come say their goodbyes.

“A lot of resident dogs know those people and know something is different, whether the smell changes or they are moving less,” Beaver said.

Dogs also can help those dealing with other challenges.

In the book, Vogelsang introduces pets that got her through some life changes. As a little girl, her Lhasa Apso named Taffy helped her adjust to an unwanted move from New England to California.

Just after the birth of her first child, her golden retriever Emmett wouldn’t leave her alone as she struggled with postpartum depression and a new career as a veterinarian. He gave her love, as well as looks that led to some soul-searching to get the help she needed, Vogelsang said.

Later, an older Labrador retriever named Kekoa taught her to let go of unrealistic expectations as she balanced career and motherhood. When the dog got cancer, Vogelsang didn’t push endless procedures and medications, because it wasn’t right for Kekoa. That led her into the hospice-care field.

After Vogelsang’s mother moved in, the family spent two months watching movies, eating cookies and watching butterflies flit across the yard. Pat Marzec even read her daughter’s book, giving her approval.

She died June 3, about a month before it went to print.

“Those last two months we had were just an incredible time,” Vogelsang said. “Death is just a moment. Life is everything else leading up to it.”

Complete Article HERE!