Enhancing Life Near Death
Humor takes the sting away; it humanizes us; it helps us keep our perspective. Humor enriches us; it educates us; it brings us joy. Humor doesn’t dissolve the pain or make our life any less poignant, but it does help make things more bearable. That’s my philosophy, and I’m happy to share it with you on a weekly basis. I hope that if you enjoy what you see, you will take the opportunity to share it with others.
Philip Gould was diagnosed with cancer of the oesophagus in 2008, and in the summer of 2011 he was given three months to live. Filmed during the last two weeks of his life, this intimate portrait reveals Gould’s quest to find meaning in what he called ‘the death zone’.
Gould believed that for the terminally ill and those close to them, there can be moments of joy, resolution and inspiration just as intense as those of fear, discomfort and sadness.
‘I am not redefining death, I am offering another way to perceive dying. I have been offered an opportunity to live every moment until there are no more moments for me to live and for that I will be eternally grateful.’
I thought I’d take a moment and share with you a resource that has come my way.
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So give it a look-see. I think you’ll be impressed.
By Steve Pokin
Dr. Bob Saylor sits slumped in a wheelchair waiting for me outside Mercy’s Cancer Center.
His wife of 46 years, Marcie, stands behind the chair. She seems to be slumping, too, as if punched in the gut.
Bob, 64, has brain cancer. He is dying.
The plan was to interview him for about 90 minutes as he received chemotherapy. But he and Marcie have just been told his white-blood-cell count is too low. His fragile body can not handle the rigors of chemotherapy.
I ask if we can still do the interview. His voice is a whisper — sure. I wheel him into the small chapel in the cancer center.
I want to establish a starting point for our conversation. I don’t want to presume. So I ask him: Do you believe you are at the end of your life?
“Yes, I do. Do I see myself dying tonight? No. Would I be surprised if I did? No, I would not be.”
Bob is a nephrologist — a kidney specialist. But about10 years ago he went back to school for a master’s degree in bioethics. For the past several years he has been the director of ethics for Mercy in Springfield.
During this time he has worked with doctors, nurses, patients and their families. He has explored the big questions of life and death and tried to determine — case by case — when medical intervention should cease, when you simply let things be.
“Just because we can intervene as doctors does not always mean we should,” he says.
Now, as cancer takes hold of him, he is the patient. He is the one who must choose how to live his remaining days.
The deadliest cancer
In November, he was betrayed by his left hand. It stopped working. He thought it was carpal tunnel syndrome.
It wasn’t. It was a glioblastoma multiforme brain tumor the size of a small fist. Sadly, the fist has opened and spread its malignant fingers.
Weeks later, he was in Houston being prepped for brain surgery at the University of Texas M.D. Anderson Cancer Center.
The nurse practitioner looked at him and said: “If I were you, I would go home and get my affairs in order.”
In the chapel, he tells me, “That’s not how we do things at Mercy.”
The surgeon removed 92 to 95 percent of the tumor, which is good, Saylor says. He would undergo chemo and radiation to try to get the rest.
Once back in Springfield, Saylor added a new, different treatment — a supplement to the chemo and radiation.
It was a non-invasive procedure called Optune. Electrodes were placed on his scalp. They sent wave-like electrical fields into his brain to prevent the cancer cells from multiplying.
The initial results offered hope. Mercy issued a press release. The News-Leader ran a story — “Mercy doc tries new tumor-zapping treatment for brain cancer.”
Then the tumor came back.
“We can’t say it failed,” Bob says. “It is not doing what we thought it was going to do.”
“Well, I guess you’d say …
What can make me feel this way? My girl. Talkin’ ’bout my girl.”
Bob Saylor and Marcelene McMartin were 14 when they met at East High School in Sioux City, Iowa. They married at 18.
The song of their life together is “My Girl,” by the Temptations. Their boat, docked at Table Rock Lake, is “My Girl II.”
He plays that song every time they leave the dock.
“She has been my pillar of faith,” Bob says of his wife. “She has been my caregiver. She is my wife. She has kind of been my everything.”
Although he is ready to die, he clings to this good life of rewarding work, three brothers, four children and seven grandchildren.
“I still feel I have so much to teach people,” he says. “I have physicians coming down the hallway to discuss cases, to talk about things.”
He blames no one and no thing for his cancer.
“I never said to myself, ‘Why me? Why is this happening to me?’ I guess I have never been that way. What is going to happen is going to happen.”
He has a medical directive that gives Marcie oversight of his care. He will not tell me what it says. He does not want to unduly influence anyone else’s decision of what they should do. That decision is personal. It is based on the narrative of one’s own life.
But he does offer this: “I am far more concerned about quality of life than quantity of life.”
SOGI task force
I first met Bob at Brentwood Christian Church, where we attend. He sought me out to discuss our coverage of the community debate on the Sexual Orientation and Gender Identity ordinance.
This was before the ordinance was repealed in April. Bob was on the SOGI task force. He supported the law.
“Our job as a community and as a government is not to legislate morals,” he tells me. “It is to protect people from harm.”
The issue of protecting people based on their sexual orientation was important to him in large part because years ago he treated AIDS patients while in the Army at Fort Sam Houston.
Later, he was one of the few physicians who treated AIDS patients in the 1980s in Sioux City. And he treated them in Springfield, at Mercy, as well.
Bob served on the task force with others, including Dick Hardy, a former president of the Assemblies of God Central Bible College, which has since ceased operation. Their views on social issues — including SOGI — are as different as the music of Black Sabbath and, let’s say, the Temptations.
The two men discovered they both attended East High School in Sioux City. They did not know each other in high school. Hardy is 61.
They met for lunch. Hardy showed up in his high school letter sweater.
“We talked about life and friendships,” Hardy says.
They understood each other better; they respected each other; but continued to disagree.
“A friendship and a relationship are far more important than any task force that comes and goes,” Hardy says. “A friendship is from start to finish.”
Hardy calls Bob regularly.
“He will just start out in prayer,” Bob says. “They are beautiful prayers. He is a wonderful man. Yes, we have completely different social ideas. But he cares not about that. He cares about me as a person.”
The hopes of others
If anything, Bob is a pragmatist. As such, when he was first diagnosed he was unsure how to respond to those who said they prayed for him.
“I’m not sure if their prayers are going to matter in terms of whether I live or die — but it helps them,” he says. “My oldest son, Rob, has told me that when people pray for me it means they care about me. And if I ask people not to pray for me I take away their hope. I leave them only with despair. And I don’t want to do that.”
I ask Bob if he believes in an after-life.
“Do I want to? Yeah, I want to. Everybody wants to. I guess I do. I suppose I do. … I am not sure what life is before we are born or after we die. I guess that is as existential as you can get.”
I ask if he is in pain. He is not.
What is your greatest concern?
“Losing my cognitive ability is my greatest fear of all,” he says.
“Your business is your mind. If I can’t do what I want to do or am trained to do, it would be very difficult for me. Very, very difficult.”
He has, thus far, kept his sharp mind and occasionally sharp tongue.
“Some people think that during my brain surgery they should have taken out a little more of my sarcasm,” he says.
Bob can no longer walk on his own. His left hand still does not function. Yet he writes extensively on the website Caring Bridge about the loves of his life: his wife, his brothers, his parents, his co-workers, his in-laws, his pastors.
He will not pen good-bye letters to his four children. He doesn’t want to tip the scale of memory to his final days.
He and his father, who is deceased, shared a love of poet Robert Frost, and in particular the poem “Stopping by Woods on a Snowy Evening.” It is a poem about the inevitability of death.
A few months ago, Bob dreamt of his father reciting this poem to him in his baritone voice. Bob believes the dream has meaning — that his life will continue to have value until it ends. The closing stanza is:
“The woods are lovely, dark, and deep.
“But I have promises to keep.
“And miles to go before I sleep.
“And miles to go before I sleep.”
Complete Article HERE!
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.
“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.
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.
Today, 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.
“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.
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.
There 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!
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.
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.
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).
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!
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.
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.”
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