Tag: Death And Dying

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The Role Of Mindfulness In End Of Life Care

by vimhsadmin

Mindfulness assists people with their end of life process by giving them and their caregivers a tool they can use in order to be fully aware of the present moment and their own physical and mental states

[T]he Venerable Yin Kit (pictured above) has spent decades in hospitals, hospices, and homes, assisting people through their death. Through these experiences, her understanding of how to compassionately and wisely care for those dying and their families has changed as a result of constantly reflecting on what she experiences and what she learns as a Buddhist nun living in the West in the 21st century.

The end of life is a transformation from one physical existence to another existence. Similarly, mindfulness is a transformation of one mental existence into another mental existence.

Emphasis on mindfulness

Buddhist teachings have always emphasized the contemplation of death; a subject that engenders so much fear and worry for many. Mindfulness can take on a role  that  compliments advanced medical technology in end of life (EOL) care.

Mindfulness assists people with their end of life process by giving them and their caregivers a tool they can use in order to be fully aware of the present moment and their own physical and mental states. This allows them to settle into each moment and open up to a wider vision of the future.

With mindfulness, a dying person not only sees their physical changes, but also how their mind influences the perception and experience of their waning body. With an aware and balanced mind, a person is more able to cope with the vicissitudes and challenges that come with this stage of life and be at peace with these experiences. This in turns greatly helps to console the family, friends and care-givers.

Mindfulness also assists in opening pathways for healing relationships and positive life reviews. One can be more receptive and capable of planning for, dealing with and understanding the constantly changing physical and mental experiences and in the end, one’s own death.

The role of mindfulness in end of life care

Venerable Yin Kit speaks at The End of Life: Dying, Suicide, Death conference in Vancouver, November 2016

Venerable Yin Kit spoke about the role of mindfulness in end-of-life care at Simon Fraser University’s Vancouver campus on November 3, 2016. She was also a participant in a “praxis panel” that included Rabbi Laura D. Kaplan, veterinarian Dr. Jeff Berkshire, and counselor Hilda Fernandez.

Venerable Yin Kit, also known as “Sister Jessie”, has been a Buddhist nun since 1992 and is the spiritual leader of Po Lam Buddhist Association in Chilliwack, B.C. She is involved in leading numerous workshops teaching hospice care and hospital spiritual care in Hong Kong and in Canada. The Venerable is also the advisor to the Hong Kong SPGA Hospice program.

In 2005, Venerable Yin Kit established the Compassionate Centre for Health, a service for the Chinese-speaking community in the Greater-Vancouver area. This group has grown to over fifty active volunteers who visit senior homes and palliative care units at several sites. The Venerable has spent decades in hospitals, hospices, and homes, assisting people through their death. Through these experiences, her understanding of how to compassionately and wisely care for those dying and their families has changed as a result of constantly reflecting on what she experiences and what she learns as a Buddhist nun living in the West in the 21st century.

Dr. Jeff Birkshire, Rabbi Laura Kaplan, Venerable Yin Kit Sik, and moderator Hilda Fernandez
on the Praxis Panel at The End of Life: Dying, Suicide, Death (November 2016)

The End of Life: Dying, Suicide, Death

Simon Fraser University’s Institute for the Humanities hosted a conference in November 2016 called The End of Life: Dying, Suicide, Death. The conference was intended to provide space for pondering the complex and agonizing decisions regarding the end of life. Space for such conversations is especially needed given the 2015 decision of the Supreme Court of Canada declaring that the prohibition on physician-assisted dying infringes upon Section 7 of the Canadian Charter of Rights and Freedoms, and the introduction of Bill C-14 which has resulted in debate about who, when and in what circumstances an individual may make such a decision.

Speakers included academics, graduate students and practitioners who spoke from their own particular perspectives: legal, ethical, medical, and spiritual or religious. The presentations also drew upon insights from literature and art, some of humanity’s most treasured resources.

Complete Article HERE!

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Songs of farewell

In her new book, Hallowell Singers founder Kathy Leo tells how music comforts the dying, and offers lessons for the living

By Richard Henke

BRATTLEBORO—Kathy Leo, the founder and director of Hallowell Singers, last month published On the Breath of Song: the Practice of Bedside Singing for the Dying, a book that offers guidance and insight into the practice of singing for the dying and their families.

Through the telling of true stories and over a decade of experience in song and spirit with the Hallowell hospice choir, Leo has written a guidebook for anyone offering end of life care or helping a loved one die.

“After many years of teaching workshops to newly forming or active hospice choirs, the decision to write a guidebook through personal experiences of being with the dying became clear,” writes Leo at the Hallowell website, www.hallowell-singers.org.

“On the Breath of Song is a way to get close to the bedside to explore your personal relationship with death and dying. It serves hospice singers, music therapists, chaplains, compassionate caregivers, hospice workers, and palliative care professionals.”

Birthing and dying

Although Leo has now been working with hospice care for over 15 years, she was a midwife in the Southern Vermont area for more than a decade before that. She didn’t find the change too great.

“You are in the same space: birthing and dying have similar energies,” she explains.

Shortly after Leo began her volunteer work for Brattleboro Area Hospice, musician Peter Amidon and others were invited to the bedside of a Putney woman under her hospice care to sing for two nights.

Leo writes about the experience: “In a small house on a back road in southern Vermont, a woman is dying at home surrounded by her loving family. It is a winter evening in 2003, a few days before Dinah’s last, a group of friends from the community and her church, gather around her bed to sing. She joins in. She mouths the words when her voice fails her …

“As we sing around her, Dinah is held up by her loving husband Fred, a daughter on either side of her. … [Hallowell Singers] formed after two visits to Dinah Breunig’s bedside in her home, her family welcoming and present, during the final days of her life on earth.”

Hallowell is a chorus of volunteer singers trained to practice the therapeutic art of singing for the dying. Based in Brattleboro, the chorus serves hospice clients through its affiliation with Brattleboro Area Hospice and the greater community by request.

Leo, who had been Dinah’s hospice volunteer, answered the call from Noree Ennis, the patient care Coordinator of Brattleboro Area Hospice at the time, to create and organize a “hospice choir” that would be available as a service to anyone who desired singing at the end of life as an offering of comfort.

Peter Amidon and Mary Cay Brass agreed to serve as musical directors.

‘Gifts of grace’

Almost 40 singers signed up to be trained and taught how to sing at the bedside of a dying person. Usually 4 to 6 singers go to the home of a man or woman in hospice care.

“We do not want to overwhelm the space,” Leo says. “We know how to make ourselves small in energy. Before we enter a home, we quiet ourselves internally, which can take a lot of work initially. Once there, we offer songs that are gifts of grace for everyone involved, the dying, their family and the singers.

“Beautiful things happen with music. Singing also creates a special space for a family to come closer with the dying. So much happens in this space that is rich with life, death, and mostly love.”

Leo explains that Hallowell doesn’t call these events performances, but rather, “sings.”

“We tell people not to applaud, that is not what we are here for,” she says.

The name for the Hallowell Singers comes from a song Brattleboro therapist Stephen Spitzer wrote about a friend from Hallowell, Maine, who died from a bee sting. “What he wrote so embodies the spirit of our mission that we took it as our title,” Leo says.

Since its inception in 2003, Hallowell has served hundreds of families in the Southern Vermont community.

“Little did we know at the time that as Hallowell grew and evolved, it would become a central ’practice’ in our lives, a way to learn how to live fully and with deep gratitude,” Leo writes. “Our songs and our quiet presence bring comfort and offer support to the dying. The response of those we sing for is often emotional and calming.”

Hallowell still works very closely with Brattleboro Area Hospice. “They are more like family, really, and they helped to shape and form us through support and training,” Leo confesses.

But Hallowell also has its own hospice training.

A careful approach

Leo felt the need to address specific issues that arise when singing at dying persons’ bedsides. Hallowell trainings deal with how to prepare for a sing, both individually and as a group, how to involve the family, and how to approach what Leo calls “the sacred space of dying.”

“We need to learn to enter and leave the space seamlessly,” she says.

Soon enough, the word about the special work that the Hallowell Singers were doing began to spread.

“We were asked if we could do a workshop on how to start a choir in Middlebury,” Leo says. Soon more groups were forming choirs that asked for Hallowell’s help.

“We have also helped to launch a still growing number of hospice choirs throughout the New England region and across the country by teaching workshops, offering guidance and counsel, and being available for continued support for developing hospice choirs,” Leo writes. “We are honored to be a strong model for the growing movement of the practice of bedside singing for the dying.”

Besides the numerous smaller workshops, for the past six years, Leo and Amidon have given a weekend “deepening workshop” once a year at the Rowe Center in Massachusetts.

“These are always well-attended, and people come from all over the country, even someone from New Zealand who wanted to start a Hallowell choir there,” Leo elaborates. “This movement, which began in Putney, now is spreading all over the world. Who can explain it? Perhaps it was just the right time, but it is pretty amazing.”

True stories of tenderness

Leo has often been exhorted to write a book offering guidance and insight into the practice of singing for the dying and their families.

“I first was asked to write up a guidebook years ago, but I kept telling everyone and myself, ‘It wasn’t the right time, it wasn’t time, it wasn’t time,’” she says.

But finally Leo realized that she had no real excuse for delay, and the result was On the Breath of Song.

Although the book is intended to help others working with hospice choirs, this is definitely not a book a rules. Instead, Leo says she has written a book of true stories filled with tenderness and emotion.

“Singing for the dying is intuitive, where strict rules have no place,” Leo says. “Consequently, when I came to write down all that I have learned over the years working with Hallowell, I realized that the best manner was through stories which inform the teaching. At the heart of these stories are the songs we sing, and the spirit of love we bring to this practice.”

Complete Article HERE!

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When dying is a choice

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[I]t was cold but the sun was shining when my father looked out the window and said he wanted to die.

He was lying in a hospital bed, tubes tying him to machines and drips. He was 65, wasn’t a smoker but, like a lot of firefighters, had inhaled things that embedded in his lungs, slowly strangling them. His skin was ashen, his eyes wet and hauntingly sad.

When he said he wanted to die, my immediate reaction was to reassure him, to hold his hand, to tell him that my mother, my brother, my sister, and I didn’t want him to go, that we loved him too much to let him go, that he couldn’t go just yet.

That was 29 years ago, and it took me many years to realize that my reaction to my father’s plaintive, death-bed declaration was selfish, that it was rooted in what I thought was best, what I wanted, not what he thought was best, not what he wanted.

My father lingered for several weeks after he told me he wanted to die, suffering greatly. I have no idea if he would have opted to end his life earlier, to end his suffering earlier, but I wish he had the option.

It would be helpful to know whether a majority of Massachusetts legislators think others should have that option, too, but for the last eight years they have punted on the Death with Dignity Act, bottling it up in committee so that it dies without the dignity of a full and fulsome hearing.

Five years ago, a referendum that would make it legal for physicians to prescribe medications that terminally ill people could use to end their lives was narrowly defeated. But, like all social change, like all civil rights, the right to die with dignity is moving forward, inexorably.

Last month, the Massachusetts Medical Society commissioned a survey of its members’ attitudes toward what they called “medical aid in dying.” For a group that has historically opposed what some call physician-assisted suicide, the mere act of seeking its members’ opinions acknowledges the shift, much of it generational, in thinking.

In October, Dr. Roger Kligler, a retired Falmouth physician with prostate cancer, filed a lawsuit asserting he has a right to obtain a lethal dose of medication from a doctor willing to prescribe it if he becomes terminally ill and chooses to avoid more suffering.

Dr. Kligler rightly believes he’ll get a quicker answer from a court than the Great and General Court. As it has with other highly contentious matters, including same-sex marriage and the legalization of marijuana, the Legislature has been more than happy to let the courts or the public do the heavy lifting.

But even if a court agrees with Dr. Kligler’s argument, the decision could be narrowly tailored to only his case. And as the messy rollout of marijuana legalization has shown, legislating complex matters by referendum often leads to convoluted results.

The Legislature needs to take on Death with Dignity, in all its complexity.

Nine years ago, State Representative Lou Kafka sat down with one of his constituents, a guy from Stoughton named Al Lipkind, who was dying of stomach cancer. Lipkind asked Kafka to file a bill that would make it legal for doctors to write prescriptions for terminally ill people who wanted to avoid needless suffering. Kafka refiles the bill every session. The initial dozen co-sponsors have grown to 40.

“Al was able to make me see it through his eyes,” Kafka told me. “Unless and until it becomes personalized, it’s an issue you don’t necessarily think about.”

Not long after Al Lipkind died in 2009, Kafka watched helplessly as the same disease that slowly and torturously killed my dad did the same to his father.

“I watched him gasp for breath,” Kafka said.

Like me, Lou Kafka doesn’t know if his father would have chosen to end his life before enduring months of agony. Like me, he wishes his dad had the option.

Complete Article HERE!

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‘I help people die’

A nurse reveals how she became a ‘death doula’ and volunteers to help people ‘let go’ at the end of their life

 
Rebecca Green was devastated when she lost both of her parents before she turned 16, but she’s never been afraid of death

As told to Cynthia Lawrence

REBECCA Green, 46, is a nurse and lives in Edinburgh. She says:
As I sat on the sofa, tension filled the air.

Rebecca Green was a nurse for 20 years before becoming a death doula

‘What if the ambulance doesn’t get here in time?’ a man in his 70s asked me anxiously.

He was suffering from a chronic lung illness, which meant that if his condition took a turn for the worse, he’d need immediate resuscitation or he would die.

He had always been told by family and medics to keep fighting death, but I asked if he’d ever considered letting go instead.

Rebecca decided to train as a nurse when she was 20 years old and started working in intensive care

Instantly, all traces of his fear disappeared.

He admitted he didn’t want to die, but had never thought of simply giving in when the time came.

As an end of life doula – or death doula – my job is to support people in facing their fears and coming to terms with their own passing.

As odd as it sounds, people tend to want ‘permission’ to die without upsetting their family, and as I’m a stranger, they feel more able to tell me when they’re ready.

Often chatting to them over a cup of tea at home, I encourage my clients to express how they feel, share memories and see the beauty of their lives.

If they want to die at home, I help organise it with family support and act as a link between their loved ones and the NHS.

I’ve never been afraid of death, despite losing both parents as a child.

Despite losing both of her parents when she was young, Rebecca has never been afraid of death and enjoys helping others come to terms with letting go

Mum died of cancer when I was 11 and my dad died of a heart attack four years later. After that, I went to live with my aunt.

I remember being very angry – how could people carry on when my world had ended?

I wasn’t offered counselling, and while my school was sympathetic, no one wanted to talk about it.

At 20, I realised I loved being around people and didn’t want a typical nine-to-five job, so I trained as a nurse and started working in intensive care, A&E and later hospices, becoming familiar with the fragility of life.

But it wasn’t until 2010 that I became a death doula.

I mentioned to a friend that I’d love to take care of people through the dying process, and she told me she’d heard that people did that as a job.

While there are training courses, I decided to draw from 20 years’ nursing experience and my understanding of what to expect from patients living with a terminal illness.

Rebecca with her pet dog Baloo: She isn’t paid for supporting people through the dying process and still works full-time as a nurse

I first started doing it through word of mouth, helping a friend of a friend, but soon began working with a local charity Pilmeny Development Project, which put people in touch with me. I’ve even had people contact me on Twitter.

Although it can be a paid job, I do it voluntarily, and it ranges from once a week to once a month.

Mostly it involves simply talking to someone, but I might run the odd errand, such as popping out for a packet of biscuits.

I try not to get emotionally attached – if my feelings are involved, I’d be doing clients a disservice. But of course, I’ve been incredibly saddened by their stories.

One man in his 50s was devastated he wouldn’t live to see his sons grow up.

As he spoke, I burst into tears and we were both crying together.

Through her work, Rebecca has an appreciation for life and urges everyone not to waste it

I’ve helped 12 clients in total, but I’ve never been with one when they died – usually I don’t find out until the family informs me.

It can be hard to balance the job with a social life, as whenever a client needs me, I’m happy to help – unless I’m nursing, which I still do full-time – so I’ve cancelled many nights out.

Sometimes it’s hard to switch off, so I make sure I unwind by going to the gym, painting or walking my dog Baloo.

Some partners have found it scary, but most were supportive.

Being a death doula has made me realise we take the time that we have for granted.

It’s about making the most of the simple things and doing what we love.

Life is so precious – don’t waste it.

Complete Article HERE!

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Boomers driving changes in end-of-life care

With ever more baby boomers entering their golden years, third party end-of-life planners may be in great demand over the next two decades, as people try to take more control over their care as they die.

By Candace Moody

The Baby Boomers have redefined every stage of life they passed through, changing the definition of what it meant to be young, middle aged and now, old. (Fifty is the new 30, and gray is the new black.) Finally, we’re working on the last frontier — death.

An enormous amount of health care spending is invested in the postponement of dying. Courtney Martin wrote in the New York Times last year: “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.”

The Baby Boom generation is becoming the largest group of elderly people the country has seen, and when we go, we want to go well.

End-of-life planning became a controversial part of the Affordable Care Act when vice presidential candidate Sarah Palin labeled the idea “death panels” in 2009. In 2015, the ACA once again proposed reimbursing doctors for having the discussion with patients. Some futurists predict that third party end-of-life planners may be in great demand over the next 20 years as people try to take more control over their care as they die.

Studies have shown that two-thirds of us would prefer to die at home, but most of us generally die in Intensive Care Units at hospitals, receiving care and medication that extends the quantity of time we live, but greatly reduces the quality of it. End-of-life planners can help individuals and their families create a plan that accounts for how and where someone will face the last few months of life: at home, in a hospital or in hospice.

End-of-life counseling can be delivered by a variety of professionals, including clergy and chaplains, financial planners, medical staff or attorneys. Some colleges now offer certifications for professionals who want to specialize in end-of-life care. The certifications are often part of a gerontology program, preparing students to offer advice on social, psychological, medical, financial, legal and spiritual issues related to care.

Florida-based Mediation Training Group offers training on how to mediate between elders and their adult children about issues such as driving, remaining at home or medical care. The continuing education credit program is aimed at psychologists and social workers who deal with these issues in their family practice; similar training is offered for family law attorneys.

Doulas are women who have traditionally been trained to provide information and physical and emotional support to women before and during childbirth. The International End of Life Doula Association (www.inelda.org) offers the INELDA certification, which requires 22 hours of training. Doulas must meet certain requirements, including character references, and must complete several vigils that are evaluated by staff.

End-of-life doulas focus on planning, conducting vigil during death, and reprocessing a death with loved ones afterwards to provide insight and comfort. They may work in hospice or other institutional settings or work independently. Both the University of Central Florida and University of South Florida offer graduate certificates in end-of-life care.

End-of-life counseling is a relatively new profession, so data on salaries is not broken out from a professional’s primary practice. Attorneys and social workers will offer end-of-life services, so their earnings will supplement their fees. According to prodoula.com, certified doulas charge up to $1,500 for their services and earn an average of $45,000 per year. If compassion is your strength, you may be able to turn dying into a living.

Complete Article HERE!

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The Japanese Art of Grieving a Miscarriage

By ANGELA ELSON

[W]hen we lived in Japan, my husband took me on a date to a cemetery. In his defense, it was a famous cemetery in an Ewok-worthy forest on Mount Koya known for gimmicky headstones in the shapes of rockets and coffee cups.

Yet they didn’t interest me as much as the hundreds of stone Jizo statues that lined the wooded paths. These small figurines dressed in red caps and bibs honor the souls of babies who are never born. Crowding their feet are toys and snacks left by parents to comfort their children in the afterlife. Sometimes a woman would turn away as we approached her on the path. Sometimes the flowers would still be fresh.

My husband, Brady, and I were young enough then to assume that tragedies happened to other people and not to us. This was a belief we carried for years until the day we held hands on an ultrasound table watching the technician turn off the monitor and tiptoe out of the room. A miscarriage at 10 weeks produces no body, so there would be no funeral. “What do we even do?” I asked the doctor.

She wrote me a prescription for Percocet: “Go home and sleep.”

We went home. I didn’t sleep. I spent a week throwing myself around the house I’d decorated to look like a dojo — that’s how many souvenirs I brought when we’d moved back to the States from Japan. I was itchy with sadness. I picked at my cuticles and tore out my hair. I had all this sorrow and no one to give it to, and Brady couldn’t take it off me because his hands were already full of his own mourning. We knew miscarriage was common. But why wasn’t there anything people did when it happened?

“If only there were some kind of tradition…” I said to Brady.

“Like a Jizo?” he replied, recalling that quiet day we’d spent walking hand-in-hand through a Japanese forest of other people’s grief.

It was as if someone had poured calamine lotion all over me. “Exactly like a Jizo.”

What can’t one buy on the internet? Our statue of Jizo arrived a few days later. He was the height of a paperback and made of cement. His eyes were squinted in a mellow smile, hands folded in prayer.

According to Buddhist belief, a baby who is never born can’t go to heaven, having never had the opportunity to accumulate good karma. But Jizo, a sort of patron saint of fetal demise, can smuggle these half-baked souls to paradise in his pockets. He also delivers the toys and snacks we saw being left at his feet on Mount Koya. Jizo is the U.P.S. guy of the afterlife.

Brady and I grieved the baby in ways that were different but equally sad. One thing we both understood perfectly, though, was Jizo — why we had to search for the right kind of red yarn, how I had to crochet the smallest hat and coat three times to get it right. It was nice for us to have something to do, a project to finish in lieu of the baby I failed to complete. When Jizo was dressed, Brady complimented my handiwork. “Where should we put him? In the yard?”

“Maybe in a few days,” I balked, stationing the statue on our dining room table where I could pat him on the head on my way to the kitchen. I talked to him. Sometimes I kissed him when no one was looking, or I took him with me to the living room to watch TV.

It was crazy to fuss over a statue like I did. But I felt crazy, which could have been from the pregnancy hormones still coursing rudely through my body. Or maybe it was the lack of traditions surrounding miscarriage in the States that gave me nothing to take the edge off my grief. Without a prescribed course for mourning, I didn’t know what else to do besides mother this lump of concrete as if he could actually transfer my love to the afterlife.

After a few days of keeping Jizo in the house, I got to the point where I could put him on the front porch without too much separation anxiety. A few weeks later, Brady planted a garden for him in the backyard, where Jizo now sits and reminds us of the baby we lost — not so often as to make us sad, but often enough so that we don’t forget him entirely.

I check on Jizo when I take out the trash, picking him up when he gets knocked over by squirrels or brushing snow off his hat. I catch Brady through the window plucking leaves from his little red coat. On the anniversary of the miscarriage, I replaced the statue’s sun-bleached clothes with fresh ones, gave him a bath, kissed him on the head and put him back outside.

I’m not sure if this is the correct way to weather a miscarriage, or even the right way to Jizo. I don’t know how long I’m supposed to crochet new outfits: maybe until I don’t feel the need to, or maybe forever.

I do know that like those parents haunting Mount Koya, Brady and I will always think of that baby who never was. We’ll leave pieces of our love for him wherever we go, hoping Jizo will deliver them to wherever he is.

Complete Article HERE!

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San Francisco Is At The Forefront Of Another Frontier: Care For Dying People

Volunteers make seasonal mandalas, a ritualistic symbol in Buddhism, out of flowers in the garden of the SF Zen Hospice Project’s Guest House.

by Jay Barmann

In large part due to the enormity of suffering and loss of life during the height of the AIDS epidemic here, San Francisco has emerged two decades later with new models for providing palliative and humanistic care at the end of life, one of the best of which is represented by the tiny San Francisco Zen Hospice Project in Hayes Valley. The hospice facility, in a Victorian on Page Street, grew out of the 54-year-old San Francisco Zen Center just up the street, and began in 1987 as a way for Zen Center members to care for young AIDS sufferers and provide them with a peaceful and comfortable death. (A similar organization, Maitri, sprung up around the same time near the Castro, and continues to this day.) As a new piece in the New York Times Magazine puts it, the Zen Hospice Project “originated as a kind of compassionate improvisation,” and it has served as inspiration and proving ground for Dr. B.J. Miller, a 45-year-old clinician at UCSF who has emerged as a passionate and charismatic advocate for a new kind of end-of-life care. As he tells the Times Mag, his goal, and that of the Zen Hospice Project, is to “de-pathologize death.”

Miller is unique as a spokesperson for this new type of palliative care in that he had his own brush with death early in life, and wears the scars from it very prominently. At the age of 19, while a sophomore at Princeton, he and a couple of friends went climbing on a New Jersey Transit commuter train after a night of drinking. When he reached the top of the train, an electrical current arced out of a charged wire into Miller’s metal wristwatch, sending 11,000 volts through his body and severely burning his arm and two legs. He would soon become a triple amputee, but the experience of being in the burn unit for months and talking himself back from near death profoundly changed how he saw life, especially when he went to medical school. It’s something he describes in a TED Talk from 2015 that’s garnered nearly five million views. In it he says “we are all patients,” using the definition of the word as “one who suffers,” and says he hopes to bring a design sensibility, “that is intention, and creativity, to the experience of dying.”

A year after the Brittany Maynard case gained national attention, around the time that California’s death-with-dignity law was passing through the state legislature in mid-2015, the Times first discovered Miller and the Zen Hospice Project, describing it as “a fascinating, small-scale experiment” in an age when end-of-life care typically falls to hospitals. Hospitals, however, are not programmatically designed to comfort and care for the needs of dying people — they’re designed to make people well and send them home — and families often panic in the face of death causing disruptions in the final months of a person’s life. While, as of 2015, 44.6 percent of all deaths took place in hospice settings, 40 percent of those patients only spent a few days there following stays in intensive care — meaning, as the Times put it, there’s “not enough time to take full advantage of the technique’s soothing possibilities.” Add to that figure the fact a 2013 study that found that more people are choosing to die at home, however they still are transported back and forth to hospitals three or more times in the final 90 days of their lives — time that would be better spent quietly with loved ones, or doing something pleasurable. Also, a hospice experience should free friends and family from the burden (and occasional trauma) of being caregivers, so that they can simply be there with the person who is dying.

That is the focus of the SF Zen Hospice Project’s Guest House: sensory pleasure. Patients are allowed to smoke, outdoors, if they wish. The smell of freshly baked cookies wafting through the house is a frequent one. People play musical instruments. And in a case described in detail in the new Times Mag piece, a 27-year-old man dying of mesothelioma, that care involved welcoming in the man’s throngs of friends, their Bud Light and their video games, decorating his room like a “late-20’s-dude’s room,” letting him go on one last Sunday sailing trip with his friends despite being in significant pain, and helping him plan a wedding for his best friends to be performed in the small garden next door to the Guest House. This all happened in the course of nine days, after which he would be dead. And the wedding went on anyway, and what followed, in the hospice Guest House, was a combination wedding reception-funeral, a celebration that was “mixed up, upside-down and unexpectedly joyful.” “It makes you happy for a place like the Guest House where such things can happen,” Miller tells the Times Mag, via a meeting with colleagues, “a roof where these things can coexist.”

Shortly thereafter Miller stepped down as executive director of the Zen Hospice Project in order to pursue related goals. He’s raising seed money for what he’s calling the Center for Dying and Living, a kind of design lab focused on new models for palliative care, and he’s co-writing a field guide to end-of-life care.

These days the Zen Hospice Project’s Guest House is still only six beds, two of which are reserved for UCSF patients, and the others funded through donations and sliding-scale fees from patients. In contrast to hospitals, which may charge thousands of dollars per day to house and care for a dying patient for an indeterminate period, stays at the Guest House cost the organization about $750 a day, proving that their model is not just better from a human standpoint, but also an economic one, even if traditional insurance does not tend to cover the cost of residential hospice.

It’s something the rest of the country, and the insurance industry, needs to consider, and maybe Dr. Miller will be the one to build it on a larger scale here in the Bay Area, before long.

Complete Article HERE!