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When my brother-in-law died, we skipped the funeral parlor and took him home.

By Gary Wasserman

My wife’s brother Rich died the last week in February. They were very close. Shortly after he passed, in the emergency room of a hospital in Washington state, his body came home. There it was wrapped in a Stewart tartan blanket (his family name) and placed on a table in a window alcove facing Mount Baker. He remained there for the next three days clad in a favorite red plaid Pendleton shirt, jeans, moccasins and a much-worn woolen cap, On the second day, his wife, Sharon, put binoculars around his neck, a reminder of his many hours watching the snow geese, hawks, trumpeter swans and bald eagles surrounding his beloved farm.

Sharon was connecting to a movement that had arisen in the 1990s for families to take back responsibility from hired professionals for the caring and mourning of loved ones in the privacy of their homes. It turns out to be an old American tradition.

Before the Civil War, funerals were a family affair. With help from their church and community, family members would wash, display the body and dig the grave for their dead. But, as Civil War historian Drew Gilpin Faust writes in her book “This Republic of Suffering,” the huge numbers of young men dying in the war far from home overwhelmed the personal home funeral. Instead, there was embalming, mass-marketed coffins and transporting bodies long distances. President Abraham Lincoln’s assassination, followed by the public display of his embalmed body, became a major moment in the national marketing of this new death trade.

By the 20th century, undertakers were elevated to a professional class of funeral directors, bodies were seen as a risk to public health and the false narrative spread that families no longer had the right to care for their own. The practice of dying at home and family caring for the dead remained common only in rural areas.

Like most of us, Rich and Sharon hadn’t planned their funeral. Unlike us, they had talked and read about death, and attended a class on alternatives to standard funerals. These included arrangements for green burials, where bodies in the ground decompose in compostable caskets. Sharon also had talked with a friend who, with the help of a local home funeral group, had kept her husband’s body at home for three days for visits and prayers.

Rich’s death had been unexpected. A retired ophthalmologist, he had recently been diagnosed with prostate cancer and had his first chemotherapy treatment the week before. He developed sepsis, which can happen after chemo, and died the following day. He was 77.

Sepsis is fast-moving and deadly. Here are the symptoms to recognize

At the hospital’s ER, Sharon explained to two chaplains who sat with her that she wanted to bring Rich home. They put her in touch with A Sacred Moment, a local funeral home that is part of a national network reviving and supporting family-managed funerals.

A “very kind” man, as Sharon put it, from the group took the body to the house in a van. He gave Sharon information on keeping it cold with packs of dry ice and instructions to replace them every 12 to 18 hours. Sharon and her daughter washed and clothed the body.

Rich had passed away at 11 a.m. and by 1 p.m. his body was home.

For the next three days family and friends came by to see Rich. Some talked to him; one shared the beat of an ancient drum; some read poems. Sharon thought that many friends wouldn’t have attended a funeral parlor for a restrained viewing in a limited time. Here they could arrive individually or as family, whenever they wanted, stay as long or little as they could, bring photos or food or prayers or babies or guitars.

Our son Daniel arrived in the middle of the night to sit alone with the uncle who helped raise him.

Sharon found it all incredibly comforting. Rich’s men’s support group of 30 years gathered for a morning of stories of kayaking in Alaska and tales of salmon fishing, hiking and climbing in the North Cascades. The second morning the couple’s Buddhist Sangha meditation group chanted, prayed together and held Sharon as they wept.

Many of the visitors seemed shocked that this was possible, that a body could be brought home for people to mourn however they wanted.

For family, it provided a last chance to talk with Rich, to be with him in a place he loved. Sharon remarked that so many people worried that they “never had a chance to say goodbye.” Now they could, and they didn’t have to look back and regret not saying the right thing.

In their own unplanned way, people could grieve.

At times there was a crowd, at others a solitary friend. A family member lit a vaporizer full of essential oils. Others placed flowers on his body. A table nearby had his notes written when he couldn’t talk because of mouth sores from the chemo and a guest book that soon filled with photos and letters and mementos.

Not everyone showed up — there were no solemn strangers in dark suits timing the starched formalities of yet another ceremony. Rich’s death was wrapped in the life that continued around it. Often there were kids playing, dogs wrestling, women cooking.

At 2 p.m. of the third day, the kindly man from A Sacred Moment returned to take the body. As they carried it out, Sharon played on the piano “It Had To Be You,” which she and Rich had often sung together. This time, she sang it with her daughter, Jo.

Washington state does not allow bodies to be buried outside a cemetery, so he was cremated and his ashes were scattered in his garden. A memorial service will be held when the tulips bloom in early spring.

Complete Article ↪HERE↩!

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How the Death Positive Movement Is Coming to Life

From joining coffin clubs to downloading apps like WeCroak, here’s how a growing number of people are living their best life by embracing death.

Are you ready to join the death positive movement?

by Stephanie Booth

Taking a dirt nap. Biting the big one. Gone — forever.

Given the gloom and painful finality with which we speak about death, it’s no wonder that 56.4 percent of Americans are “afraid” or “very afraid” of the people they love dying, according to a Chapman University study.

The cultural mindset is that it’s something terrible to be avoided — even though it happens to all of us.

But in recent years, people from all walks of life have begun to publicly push back against that oxymoronic idea.

It’s called the death positive movement, and the goal isn’t to make death obsolete. This way of thinking simply argues that “cultural censorship” of death isn’t doing us any favors. In fact, it’s cutting into the valuable time we have while we’re still alive.

What does that look like, exactly?

This rebranding of death includes end-of-life doulas, death cafes (casual get-togethers where people chat about dying), funeral homes that let you dress your loved one’s body for their cremation or be present for it.

There’s even the WeCroak app, which delivers five death-relevant quotes to your phone each day. (“Don’t forget,” a screen reminder will gently nudge, “you’re going to die.”)

Yet despite its name, the death positive movement isn’t a yellow smiley face–substitute for grief.

Instead, “it’s a way of moving toward neutral acceptance of death and embracing values which make us more conscious of our day-to-day living,” explained Robert Neimeyer, PhD, director of the Portland Institute for Loss and Transition, which offers training and certification in grief therapy.

Death as a positive mindset

Although it’s hard to imagine, what with our 24-hour news cycle that feeds on fatalities, death hasn’t always been such a terrifying prospect.

Well, at least early death was more commonplace.

Back in 1880, the average American was only expected to live to see their 39th birthday. But “as medicine has advanced, so has death become more remote,” explained Ralph White.

White is the co-founder of the the New York Open Center, an inspired learning center that launched the Art of Dying Institute. This is an initiative with a mission to reshape the understanding of death.

Studies show that 80 percent of Americans would prefer to take their last breath at home, yet only 20 percent do. Sixty percent die in hospitals, while 20 percent live their last days in nursing homes.

“Doctors are trained to experience the death of their patients as failure, so everything is done to prolong life,” White said. “Many people use up their life savings in the last six months of their lives on ultimately futile medical interventions.”

When the institute was founded four years ago, attendees often had a professional motivation. They were hospice nurses, for instance, or cancer doctors, social workers, or chaplains. Today, participants are often just curious individuals.

“We consider this a reflection of American culture’s growing openness to addressing death and dying more candidly,” White said.

“The common thread is that they’re all willing to engage with the profound questions around dying: How do we best prepare? How can we make the experience less frightening to ourselves and others? What might we expect if consciousness continues after death? What are the most effective and compassionate ways of working with the dying and their families?”

“The death of another can often crack us open and reveal aspects of ourselves that we don’t always want to see, acknowledge, or feel,” added Tisha Ford, manager of institutes and long-term trainings for the NY Open Center.

“The more we deny death’s existence, the easier it is to keep those parts of ourselves neatly tucked away.”

Death as a community builder

In 2010, Katie Williams, a former palliative care nurse, was attending a meeting for lifelong learners in her hometown of Rotorua, New Zealand, when the leader asked if anyone had new ideas for clubs. Williams did. She suggested she could build her own coffin.

“It was a shot from somewhere and totally not a considered idea,” said Williams, now 80. “There was no forward planning and little skill background.”

And yet, her Coffin Club generated massive interest.

Williams called up friends between the ages of 70 and 90 with carpentry or design skills she thought could be useful. With the help of a local funeral director, they began building and decorating coffins in William’s garage.

“Most found the idea appealing and the creativity exciting,” said Williams. “It was an incredible social time, and many found the friendships they made very valuable.”

Pearl, a New Zealand Coffin Club member, poses with her pet chicken in her decorated coffin.

Nine years later, although they’ve since moved to a larger facility, Williams and her Coffin Club members still meet every Wednesday afternoon.

Children and grandchildren often come too.

“We think it’s important that the young family members come [to] help them to normalize the fact that people die,” explained Williams. “There’s been so much ‘head in the sand’ thinking involved with death and dying.”

Younger adults have shown up to make coffins for terminally ill parents or grandparents. So have families or close friends experiencing a death.

“There’s lots of crying, laughing, love and sadness, but it has been very therapeutic as all ages are involved,” said Williams.

There are now multiple Coffin Clubs across New Zealand, as well as other parts of the world, including the United States. But it’s less about the final product and more about the company, Williams pointed out.

“It gives [people] the opportunity to voice concerns, get advice, tell stories and mingle in a free, open way,” said Williams. “To many who come, it’s an outing each week that they cherish.”

Death as a life changer

Janie Rakow, an end-of-life doula, hasn’t just changed her life because of death. She helps others do the same.

A corporate accountant for 20 years, Rakow still vividly remembers being mid-workout at a gym when planes struck the World Trade Towers on September 11, 2001.

“I remember saying to myself, ‘Life can change in one second,’” said the Paramus, New Jersey, resident. “That day, I wanted to change my life.”

Rakow quit her job and started volunteering at a local hospice, offering emotional and spiritual support to patients and their families. The experience profoundly changed her.

“People say, ‘Oh my gosh, it must be so depressing,’ but it’s just the opposite,” Rakow said.

Rakow trained to become an end-of-life doula and co-founded the International End of Life Doula Association (INELDA) in 2015. Since then, the group has trained over 2,000 people. A recent program in Portland, Oregon, sold out.

During a person’s last days of life, end-of-life doulas fill a gap that hospice workers simply don’t have the time for. Besides assisting with physical needs, doulas help clients explore meaning in their life and create a lasting legacy. That can mean compiling favorite recipes into a book for family members, writing letters to an unborn grandchild, or helping to clear the air with a loved one.

Sometimes, it’s simply sitting down and asking, “So, what was your life like?”

“We’ve all touched other people’s lives,” said Rakow. “Just by talking to someone, we can uncover the little threads that run through and connect.”

Doulas can also help create a “vigil plan” — a blueprint of what the dying person would like their death to look like, whether at home or in hospice. It can include what music to play, readings to be shared aloud, even what a dying space may look like.

End-of-life doulas explain signs of the dying process to family and friends, and afterward the doulas stick around to help them process the range of emotions they’re feeling.

If you’re thinking it’s not so far removed from what a birth doula does, you’d be correct.

“It’s a big misconception that death is so scary,” said Rakow. “99 percent of the deaths I’ve witnessed are calm and peaceful. It can be a beautiful experience. People need to be open to that.”

Complete Article ↪HERE↩!

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Thich Nhat Hanh’s final mindfulness lesson:

How to die peacefully

Thich Nhat Hanh, 92, reads a book in January 2019 at the Tu Hieu temple. “For him to return to Vietnam is to point out that we are a stream,” says his senior disciple Brother Phap Dung.

“Letting go is also the practice of letting in, letting your teacher be alive in you,” says a senior disciple of the celebrity Buddhist monk and author.

By Eliza Barclay

Thich Nhat Hanh has done more than perhaps any Buddhist alive today to articulate and disseminate the core Buddhist teachings of mindfulness, kindness, and compassion to a broad global audience. The Vietnamese monk, who has written more than 100 books, is second only to the Dalai Lama in fame and influence.

Nhat Hanh made his name doing human rights and reconciliation work during the Vietnam War, which led Martin Luther King Jr. to nominate him for a Nobel Prize.

He’s considered the father of “engaged Buddhism,” a movement linking mindfulness practice with social action. He’s also built a network of monasteries and retreat centers in six countries around the world, including the United States.

In 2014, Nhat Hanh, who is now 92 years old, had a stroke at Plum Village, the monastery and retreat center in southwest France he founded in 1982 that was also his home base. Though he was unable to speak after the stroke, he continued to lead the community, using his left arm and facial expressions to communicate.

In October 2018, Nhat Hanh stunned his disciples by informing them that he would like to return home to Vietnam to pass his final days at the Tu Hieu root temple in Hue, where he became a monk in 1942 at age 16.

As Time’s Liam Fitzpatrick wrote, Nhat Hanh was exiled from Vietnam for his antiwar activism from 1966 until he was finally invited back in 2005. But his return to his homeland is less about political reconciliation than something much deeper. And it contains lessons for all of us about how to die peacefully and how to let go of the people we love.

When I heard that Nhat Hanh had returned to Vietnam, I wanted to learn more about the decision. So I called up Brother Phap Dung, a senior disciple and monk who is helping to run Plum Village in Nhat Hanh’s absence. (I spoke to Phap Dung in 2016 right after Donald Trump won the presidential election, about how we can use mindfulness in times of conflict.)

Our conversation has been edited for length and clarity.

Brother Phap Dung, a senior disciple of Thich Nhat Hanh, leading a meditation on a trip to Uganda in early 2019.

Eliza Barclay

Tell me about your teacher’s decision to go to Vietnam and how you interpret the meaning of it.

Phap Dung

He’s definitely coming back to his roots.

He has come back to the place where he grew up as a monk. The message is to remember we don’t come from nowhere. We have roots. We have ancestors. We are part of a lineage or stream.

It’s a beautiful message, to see ourselves as a stream, as a lineage, and it is the deepest teaching in Buddhism: non-self. We are empty of a separate self, and yet at the same time, we are full of our ancestors.

He has emphasized this Vietnamese tradition of ancestral worship as a practice in our community. Worship here means to remember. For him to return to Vietnam is to point out that we are a stream that runs way back to the time of the Buddha in India, beyond even Vietnam and China.

Eliza Barclay

So he is reconnecting to the stream that came before him. And that suggests the larger community he has built is connected to that stream too. The stream will continue flowing after him.

Phap Dung

It’s like the circle that he often draws with the calligraphy brush. He’s returned to Vietnam after 50 years of being in the West. When he first left to call for peace during the Vietnam War was the start of the circle; slowly, he traveled to other countries to do the teaching, making the rounds. And then slowly he returned to Asia, to Indonesia, Hong Kong, China. Eventually, Vietnam opened up to allow him to return three other times. This return now is kind of like a closing of the circle.

It’s also like the light of the candle being transferred, to the next candle, to many other candles, for us to continue to live and practice and to continue his work. For me, it feels like that, like the light is lit in each one of us.

Eliza Barclay

And as one of his senior monks, do you feel like you are passing the candle too?

Phap Dung

Before I met Thay in 1992, I was not aware, I was running busy and doing my architectural, ambitious things in the US. But he taught me to really enjoy living in the present moment, that it is something that we can train in.

Now as I practice, I am keeping the candlelight illuminated, and I can also share the practice with others. Now I’m teaching and caring for the monks, nuns, and lay friends who come to our community just as our teacher did.

Eliza Barclay

So he is 92 and his health is fragile, but he is not bedridden. What is he up to in Vietnam?

Phap Dung

The first thing he did when he got there was to go to the stupa [shrine], light a candle, and touch the earth. Paying respect like that — it’s like plugging in. You can get so much energy when you can remember your teacher.

He’s not sitting around waiting. He is doing his best to enjoy the rest of his life. He is eating regularly. He even can now drink tea and invite his students to enjoy a cup with him. And his actions are very deliberate.

Once, the attendants took him out to visit before the lunar new year to enjoy the flower market. On their way back, he directed the entourage to change course and to go to a few particular temples. At first, everyone was confused, until they found out that these temples had an affiliation to our community. He remembered the exact location of these temples and the direction to get there. The attendants realized that he wanted to visit the temple of a monk who had lived a long time in Plum Village, France; and another one where he studied as a young monk. It’s very clear that although he’s physically limited, and in a wheelchair, he is still living his life, doing what his body and health allows.

Anytime he’s healthy enough, he shows up for sangha gatherings and community gatherings. Even though he doesn’t have to do anything. For him, there is no such thing as retirement.

Eliza Barclay

But you are also in this process of letting him go, right?

Phap Dung

Of course, letting go is one of our main practices. It goes along with recognizing the impermanent nature of things, of the world, and of our loved ones.

This transition period is his last and deepest teaching to our community. He is showing us how to make the transition gracefully, even after the stroke and being limited physically. He still enjoys his day every chance he gets.

My practice is not to wait for the moment when he takes his last breath. Each day I practice to let him go, by letting him be with me, within me, and with each of my conscious breaths. He is alive in my breath, in my awareness.

Breathing in, I breathe with my teacher within me; breathing out, I see him smiling with me. When we make a step with gentleness, we let him walk with us, and we allow him to continue within our steps. Letting go is also the practice of letting in, letting your teacher be alive in you, and to see that he is more than just a physical body now in Vietnam.

Eliza Barclay

What have you learned about dying from your teacher?

Phap Dung

There is dying in the sense of letting this body go, letting go of feelings, emotions, these things we call our identity, and practicing to let those go.

The trouble is, we don’t let ourselves die day by day. Instead, we carry ideas about each other and ourselves. Sometimes it’s good, but sometimes it’s detrimental to our growth. We brand ourselves and imprison ourselves to an idea.

Letting go is a practice not only when you reach 90. It’s one of the highest practices. This can move you toward equanimity, a state of freedom, a form of peace. Waking up each day as a rebirth, now that is a practice.

In the historical dimension, we practice to accept that we will get to a point where the body will be limited and we will be sick. There is birth, old age, sickness, and death. How will we deal with it?

Thich Nhat Hanh leading a walking meditation at the Plum Village practice center in France in 2014.

Eliza Barclay

What are some of the most important teachings from Buddhism about dying?

Phap Dung

We are aware that one day we are all going to deteriorate and die — our neurons, our arms, our flesh and bones. But if our practice and our awareness is strong enough, we can see beyond the dying body and pay attention also to the spiritual body. We continue through the spirit of our speech, our thinking, and our actions. These three aspects of body, speech, and mind continues.

In Buddhism, we call this the nature of no birth and no death. It is the other dimension of the ultimate. It’s not something idealized, or clean. The body has to do what it does, and the mind as well.

But in the ultimate dimension, there is continuation. We can cultivate this awareness of this nature of no birth and no death, this way of living in the ultimate dimension; then slowly our fear of death will lessen.

This awareness also helps us be more mindful in our daily life, to cherish every moment and everyone in our life.

One of the most powerful teachings that he shared with us before he got sick was about not building a stupa [shrine for his remains] for him and putting his ashes in an urn for us to pray to. He strongly commanded us not to do this. I will paraphrase his message:

“Please do not build a stupa for me. Please do not put my ashes in a vase, lock me inside, and limit who I am. I know this will be difficult for some of you. If you must build a stupa though, please make sure that you put a sign on it that says, ‘I am not in here.’ In addition, you can also put another sign that says, ‘I am not out there either,’ and a third sign that says, ‘If I am anywhere, it is in your mindful breathing and in your peaceful steps.’”

Complete Article ↪HERE↩!

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Will Machines Be Able to Tell When Patients Are About to Die?

The doctor-patient relationship—the heart of medicine—is broken: Doctors are too distracted and overwhelmed to truly connect with their patients, and medical errors and misdiagnoses abound. In Deep Medicine, physician Eric Topol reveals how artificial intelligence can help.

By

A few years ago, on a warm sunny afternoon, my 90-year-old father-in-law was sweeping his patio when he suddenly felt weak and dizzy. Falling to his knees, he crawled inside his condo and onto the couch. He was shaking but not confused when my wife, Susan, came over minutes later, since we lived just a block away. She texted me at work, where I was just finishing my clinic, and asked me to come over.

When I got there, he was weak and couldn’t stand up on his own, and it was unclear what had caused this spell. A rudimentary neuro exam didn’t show anything: his speech and vision were fine; muscle and sensory functions were all OK save for some muscle trembling. A smartphone cardiogram and echo were both normal. Even though I knew it wouldn’t go over too well, I suggested we take him to the emergency room to find out what the problem was.

John, a Purple Heart–decorated World War II vet, had never been sick. Only in recent months had he developed some mild high blood pressure, for which his internist had prescribed chlorthalidone, a weak diuretic. Otherwise, his only medicine over the years was a preventive baby aspirin every day. With some convincing he agreed to be seen, so along with his wife and mine, we drove over to the local ER. The doctor there thought he might have had some kind of stroke, but a head CT didn’t show any abnormality. But then the bloodwork came back and showed, surprisingly, a critically low potassium level of 1.9 mEq/L—one of the lowest I’ve seen. It didn’t seem that the diuretic alone, which can cause less extreme reduction in potassium, could be the culprit. Nevertheless, John was admitted overnight just to get his potassium level restored by intravenous and oral supplement.

All was well until a couple of weeks later, when he suddenly started vomiting bright red blood. He was so unwilling to be sick that he told his wife not to call Susan. But she was panicked and called Susan anyway. Again, my wife quickly arrived on the scene. There was blood everywhere, in the bedroom, in the living room, and bathroom. Her father was fully alert despite the vomiting and a black, tarry stool, both of which were clear indications that he was having a major gastrointestinal bleed. He needed to go to the ER again. At the hospital a few hours later, after an evaluation and a consultation with a GI specialist, an urgent endoscopy showed my father-in-law had esophageal varices—a network of abnormal blood vessels—that were responsible for the bleeding.

To do the procedure of localizing the source of bleeding, John was anesthetized and given fentanyl, and when he finally got to a hospital room in the evening, he could barely say a few words. Soon thereafter he went into a deep coma. Meanwhile his labs came back: his liver function tests were markedly abnormal, and his blood ammonia level was extremely high. An ultrasound showed a cirrhotic liver. We quickly came to the realization that the esophageal varices were secondary to end-stage liver disease. A man who had been perfectly healthy for 90 years all of a sudden was in a coma with a rotted liver. He was receiving no intravenous or nutritional support, but he was receiving lactulose enemas to reduce his blood ammonia level from the liver failure. His prognosis for any meaningful recovery was nil, and the attending doctor and the medical residents suggested that we classify him as a do-not-resuscitate order.

Arrangements were made over the next few days for him to come to our house with hospice support, so he could die at home. Late on a Sunday night, the night before we were to take my father-in-law home to die, my wife and daughter went to visit him. They both had been taught “healing touch” and, as an expression of their deep love, spent a few hours talking to him and administering this spiritual treatment as he lay comatose.

On Monday morning, my wife met with the hospice nurse outside the hospital room. Susan told the nurse that, before they went over the details, she wanted to go see her father. As Susan hugged him and said, “Dad, if you can hear me, we’re taking you home today.” John’s chest heaved; he opened his eyes, looked at her, and exclaimed, “Ohhhhhhh.” She asked him if he knew who she was, and he said, “Sue.”

If there was ever a family Lazarus story, this was it. Everything was turned upside down. The plan to let him die was abandoned. When the hospice transport crew arrived, they were told the transfer plan was ditched. An IV was inserted for the first time. The rest of the family from the East Coast was alerted of his shocking conversion from death to life so that they could come to visit. The next day my wife even got a call on her cell phone from her father asking her to bring him something to eat.

My lasting memory of that time is taking John on a wheelchair ride outside. By then he’d been in the hospital for 10 days and, now attached to multiple IVs and an indwelling Foley catheter, was as pale as the sheets. Against the wishes of his nurses, I packaged him up and took him in front of the hospital on a beautiful fall afternoon. We trekked down the sidewalk and up a little hill in front of the hospital; the wind brought out the wonderful aroma of the nearby eucalyptus trees. We were talking, and we both started to cry. I think for him it was about the joy of being alive to see his family. John had been my adopted father for the past 20 years, since my father had died, and we’d been very close throughout the nearly 40 years we had known each other. I never imagined seeing him sick, since he had always been a rock. And now that he had come back to life, compos mentis, I wondered how long this would last. The end-stage liver disease didn’t make sense, since his drinking history was moderate at worst. There was a blood test that came back with antibodies to suggest the remote possibility of primary biliary cirrhosis, a rare disease that didn’t make a lot of sense to find in a now 91-year-old man (the entire family had gotten to celebrate his birthday with him in the hospital). Uncertainties abounded.

He didn’t live much longer. There was debate about going to inject and sclerose the esophageal varices to avoid a recurrent bleed, but that would require another endoscopy procedure, which nearly did him in. He was about to be discharged a week later when he did have another bleeding event and succumbed.

What does this have to do with deep changes with AI? My father-in-law’s story intersects with several issues in healthcare, all of them centering on how hospitals and patients interact.

The most obvious is how we handle the end of life. Palliative care as a field in medicine is undergoing explosive growth already. It is going to be radically reshaped: new tools are in development using the data in electronic health records to predict time to death with unprecedented accuracy while providing the doctor with a report that details the factors that led to the prediction. If further validated, this and related deep learning efforts may have an influence for palliative care teams in more than 1,700 American hospitals, about 60 percent of the total.

There are only 6,600 board certified palliative-care physicians in the United States, or only one for every 1,200 people under care, a situation that calls out for much higher efficiency without compromising care. Less than half of the patients admitted to hospitals needing palliative care actually receive it. Meanwhile, of the Americans facing end-of-life care, 80 percent would prefer to die at home, but only a small fraction get to do so—60 percent die in the hospital.

A first issue is predicting when someone might die—getting that right is critical to whether someone who wants to die at home actually can. Doctors have had a notoriously difficult time predicting the timing of death. Over the years, a screening tool called the Surprise Question has been used by doctors and nurses to identify people nearing the end of life—to use it, they reflect on their patient, asking themselves, “Would I be surprised if this patient died in the next 12 months?” A systematic review of 26 papers with predictions for over 25,000 people, showed the overall accuracy was less than 75 percent, with remarkable heterogeneity.

Anand Avati, a computer scientist at Stanford, along with his team, published a deep learning algorithm based on electronic health records to predict the timing of death. This might not have been clear from the paper’s title, “Improving Palliative Care with Deep Learning,” but make no mistake, this was a dying algorithm. There was a lot of angst about “death panels” when Sarah Palin first used the term in 2009 in a debate about federal health legislation, but that was involving doctors. Now we’re talking about machines. An 18-layer DNN learning from the electronic health records of almost 160,000 patients was able to predict the time until death on a test population of 40,000 patient records, with remarkable accuracy. The algorithm picked up predictive features that doctors wouldn’t, including the number of scans, particularly of the spine or the urinary system, which turned out to be as statistically powerful, in terms of probability, as the person’s age. The results were quite powerful: more than 90 percent of people predicted to die in the following three to twelve months did so, as was the case for the people predicted to live more than 12 months. Noteworthy, the ground truths used for the algorithm were the ultimate hard data—the actual timing of deaths for the 200,000 patients assessed. And this was accomplished with just the structured data in the electronic records, such as age, what procedures and scans were done, and length of hospitalization. The algorithm did not use the results of lab assays, pathology reports, or scan results, not to mention more holistic descriptors of individual patients, including psychological status, will to live, gait, hand strength, or many other parameters that have been associated with life span. Imagine the increase in accuracy if they had—it would have been taken up several notches.

An AI dying algorithm portends major changes for the field of palliative care, and there are companies pursuing this goal of predicting the timing of mortality, like CareSkore, but predicting whether someone will die while in a hospital is just one dimension of what neural networks can predict from the data in a health system’s electronic records. A team at Google, in collaboration with three academic medical centers, used input from more than 216,000 hospitalizations of 114,000 patients and nearly 47 billion data points to do a lot of DNN predicting: whether a patient would die, length of stay, unexpected hospital readmission, and final discharge diagnoses were all predicted with a range of accuracy that was good and quite consistent among the hospitals that were studied. A German group used deep learning in more than 44,000 patients to predict hospital death, kidney failure, and bleeding complications after surgery with remarkable accuracy.

DeepMind AI is working with the US Department of Veterans Affairs to predict medical outcomes of over 700,000 veterans. AI has also been used to predict whether a patient will survive after a heart transplant and to facilitate a genetic diagnosis by combining electronic health records and sequence data. Mathematical modeling and logistic regression have been applied to such outcome data in the past, of course, but the use of machine and deep learning, along with much larger datasets, has led to improved accuracy.

The implications are broad. As noted physician-author Siddhartha Mukherjee reflected, “I cannot shake some inherent discomfort with the thought that an algorithm might understand patterns of mortality better than most humans.” Clearly, algorithms can help patients and their doctors make decisions about the course of care both in palliative situations and those where recovery is the goal. They can influence resource utilization for health systems, such as intensive care units, resuscitation, or ventilators. Likewise, the use of such prediction data by health insurance companies for reimbursement hangs out there as a looming concern.

Going back to my father-in-law’s case, his severe liver disease, which was completely missed, might have been predicted by his lab tests, performed during his first hospitalization, which showed a critically low potassium level. AI algorithms might have even been able to identify the underlying cause, which remains elusive to this day. My father-in-law’s end-of-life story also brings up many elements that will never be captured by an algorithm. Based on his labs, liver failure, age, and unresponsiveness, his doctors said he would never wake up and was likely to die within a few days. A predictive algorithm would have ultimately been correct that my father-in-law would not survive his hospital stay.

But that doesn’t tell us everything about what we should do during the time in which my father-in-law, or any patient, would still live. When we think of human life-and-death matters, it is hard to interject machines and algorithms—indeed, it is not enough. Despite the doctors’ prediction, he came back to life and was able to celebrate his birthday with his extended family, sharing reminiscences, laughter, and affection. I have no idea whether human healing touch was a feature in his resurrection, but my wife and daughter certainly have their views on its effect. But abandoning any efforts to sustain his life at that point would have preempted the chance for him to see, say good-bye to, and express his deep love for his family. We don’t have an algorithm to say whether that’s meaningful.

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Even in Grief, I Still Have Pride

Being part of the disability community means constantly losing friends and allies. I don’t expect that to change.

By Robyn Powell

“Kristen has passed away.” I’ll never forget learning that my best friend died. I was only 11 years old. We lived in the same town and attended school together. She had spina bifida as well as problems with her kidneys. After years of dialysis, it was kidney failure that ultimately killed Kristen.

Now, at 37, I have lost count of the number of loved ones who have died. I do know that it is well over 20. Friends have died. Colleagues have died. Romantic partners have died. Even my first love died a few years ago. Each year I lose at least a few people I care about, and I don’t expect that to change. The deaths of people close to me are something I have come to accept.

Just last month, my friend Carrie Ann Lucas died after her health insurer refused to cover the medication she needed. Yes, she had a progressive disability but its symptoms were exacerbated because she did not receive adequate health care.

Other pioneers in the disability community, whom I looked up to, also died recently. Dr. Anita Silvers, a professor of philosophy at San Francisco State, died after complications from pneumonia. Professor Mike Oliver from the University of Greenwich in England died after a short illness. Oliver is known for developing the social model of disability.

I was born with arthrogryposis, a disability that affects my muscles and joints. I use a power wheelchair and have limited use of my arms and legs. Being disabled is normal for me. Indeed, it is all I know. It is also something I am incredibly proud of.

But each time a disabled friend dies I find myself questioning many things in my life. And one recurring question is this: How I can I maintain my disability pride when I am always surrounded by death? It is not always easy. In fact, at times it can feel insurmountable. While some of my friends have died because of their disabilities, others have died because of broken systems that devalue the lives of disabled people.

Some disabilities are associated with shorter life expectancies, but many are not. And, because of advances in technology and treatment, people with disabilities once considered terminal are living longer. Stephen Hawking, who lived for decades with A.L.S. proved that. Nevertheless, being part of the disability community means being surrounded not just by the life and support, but by death.

Research shows that people with disabilities die younger than nondisabled peers. Sometimes our life spans are shortened because of our disabilities, but that is not always the case. In one study, researchers found that disabled people are more likely than nondisabled people to die from heart disease, cancer, stroke, respiratory disease, accidents suicides and assaults. And while physical and circumstantial factors are at play, it is often the way we are treated that contributes to early death.

Disabled people encounter significant barriers to accessing health care. We are more likely to die because of police brutality (the rate is especially high for disabled people of color), and more likely to experience violence victimization. Also, disabled people often live in poverty and experience material hardships.

I have been around disabled people my entire life. The disability community is where I feel the most comfortable to be myself. They understand my experiences — both good and bad — and offer great insights without trying to fix me or my disability. They don’t see our disabilities as tragedies or something to be ashamed of. They appreciate how much it sucks when an airline breaks my wheelchair or a personal care assistant doesn’t show up, but they also recognize how important disability pride is.

Being a part of the disability community has made me who I am — and I don’t just mean in the physical sense. I have had beautiful and rich experiences, not in spite of, but because I am disabled. I have met truly amazing people whom I would never know if I weren’t disabled. Having a disability has also informed my life’s work. First as a social worker and now as an attorney and researcher, I have committed myself to fight for disability rights. My disability and the experiences I have had make me better at my work. I likely wouldn’t be in this field if I weren’t disabled, but I am thankful that I get to do this work.

Not everyone understands disability pride, which is apparent when a disabled person dies and nondisabled people nearly always repeat the same ableist remarks: “They are no longer suffering.” “She is now free to run.” “He is finally cured and now dancing among the angels.” I can’t say hearing these things doesn’t get to me; it does. These comments diminish the lives both of the dead and the living. Most of us are fine not running; we are not suffering, and we do not want to be cured.

During difficult times, I sometimes find myself wondering why I allow myself to continue to be surrounded by death. Having disabled friends means frequent loss. Death and disability are uncomfortable bedfellows. But to avoid this constant grieving would mean to rid myself of a community that I love.

In some ways, I believe that being surrounded by death has allowed me to live a more fulfilling life. I try to cherish my time with loved ones, intensely aware that it could be the last time I see them. I also strive to live in the moment, appreciating the little things in life. Because I have experienced so much loss, I know the importance of celebrating the good times.

Death is unavoidable. But as a disabled person, I am all too aware that death and disability are inextricably linked. Because of my disability, I have an enriched life. I have also experienced tremendous heartbreak. In the end, I have come to understand that I will love, and I will grieve. There’s something almost freeing about accepting that harsh reality.

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Here’s What Mortality Can Teach Us about Living in the Moment

“Maybe we need the promise of death to guard against taking life for granted.”

By Sunita Puri

I drove back to my home the next day, pensive. In my kitchen that evening, I picked at a burrito I’d grabbed from a food truck down the street. I drove home starving, but lost my appetite after a few bites. Outside my window, Sunset Boulevard was a river of light, a constant stream of headlights and bike lamps, colorful blinking restaurant signs and fluorescent streetlights. In a shadowed parking lot, dark figures moved quickly toward cars.

Something weighed on me, though I couldn’t articulate it precisely. I wandered around my place, sitting on my couch and moving to a chair, picking up a book and setting it down to watch TV instead. I turned the TV off and considered going to bed early. Maybe a good night’s sleep would fix my restless mind.

And then a question surfaced. What if I suffered a sudden stroke, as Auntie had? Her situation had at first reminded me of my parents’ mortality, but what of my own? Perhaps this crossed my mind because Auntie and I shared a common heritage, and she had suffered a sudden catastrophic event, which could happen to anyone regardless of their age. Maybe the fact that I had faced another transition point, my last week at my first attending job, contributed subconsciously to my mind’s sudden insistence that I consider the meaning of endings. Whatever the reason, I began once again to consider my own answers to the questions I had asked my parents. I knew that I was mortal, that at some point my body would shut down.But though my rational mind knew this, sometimes it felt like mortality didn’t apply to me. I was a doctor. I was there to tend to other people’s mortality. I thought back to all the years I’d clung to the idea of delayed gratification, the times when I’d put my life on hold until I’d completed an educational milestone. If I persisted in my studies, I’d told myself countless times, I’d someday have all the time in the world to enjoy life. I panicked now as I considered what my life would mean if it ended tomorrow in an accident.

What had I learned about death in doing this work? I’d seen that no amount of considering or preparing for it made it easy. Talking about it to prepare frightened loved ones, saying or writing good-byes (if one was lucky and lucid enough to do so), and trying to make peace with a higher power might soothe us and help us. We feared it and sought to control every aspect of it, even considering physician-assisted suicide to give us a sense of agency over an unconquerable aspect of human existence. But if death was not only a medical fact but also a spiritual and sacred passage, then it would always have a certain mystery that was perhaps worth accepting rather than attempting to control. Because we can’t control it. We can’t always anticipate or prepare for it. What we define as a “good death” may not be in the cards for us. But maybe we can use the inevitability of death to live differently. Maybe we need the promise of death to guard against taking life for granted.

I thought back to the many times I feared death as an outcome for my patients, convinced that it was my job to forestall it, to control and manipulate nature. Giving death this much power distorted my view on life—my own, and that of my loved ones and patients. Fighting and fearing death obscured finding meaning in living moments.

What if I regarded my own death with reverence instead of fear? I wondered. Or, even more radically, what if I had some sort of gratitude for the transience of my life? Would it change what I worried and cared about? Wasn’t it necessary to think about this when I was in the midst of building a life? Or rather, living my life? And the more I thought about mortality and what it had come to mean to others and what I thought it meant to me, I realized that life was simultaneously so vast and so small.

It was daybreak after a good sleep and exhaustion as the stars emerged. It was the first crisp bite of an apple, the taste of butter on toast. It was the way a tree’s shadow moved along the wall of a room as the afternoon passed. It was the smell of a baby’s skin, the feeling of a heart fluttering with anticipation or nerves. It was the steady rhythm of a lover’s breathing during sleep. It was both solitude in a wide green field and the crowding together of bodies in a church. It was equally common and singular, a shared tumult and a shared peace. It was the many things I’d ignored or half appreciated as I chased the bigger things. It was infinity in a seashell.

I thought and thought that night, making mint tea and taking a few sips, watching the steam rise from the cup and then disappear. It felt strangely calming to focus on the cooling of heat, to appreciate the fact of temporary warmth. Maybe this, too, was the lesson of mortality: appreciating what we have now, in the midst of life, knowing that it is all a temporary gift.

I didn’t want the sum total of my life to be only a collection of my worldly achievements, boxes of degrees, and lists of patients I’d treated. I thought of what I had pushed off or considered unimportant, the things I promised myself I’d do when I “had the time.” I’d call the friend I had been meaning to call for the past year since I moved to LA. I’d take my mother to the beach in Santa Barbara. I’d take a pottery class. I’d write regularly to my uncles in Mumbai. I’d learn to cook Thai food. I’d adopt a puppy. I’d deal with my fear of bugs and go camping. These all seemed like such cheesy wishes as I thought about them. But these were the things I didn’t want to leave my life without doing. Which meant they weren’t small things.

That night was the beginning of a conversation I continue to have with myself, especially in the moments when the wrong parts of my life feel big and cast shadows over the smaller things. Those are the times I return to my copy of the Gita, having stumbled across a passage that perfectly captured how the fact of death has taught me to live differently:

No matter how strongly you ascribe to the universal delusion that you can avoid pain and only have pleasure in this life (which is utterly impossible), sooner or later you must confront the fact of your inevitable aging and eventual death Therefore, because death stirs people to seek answers to important spiritual questions it becomes the greatest servant of humanity, rather than its most feared enemy.

And there it was—the life lesson, and the death lesson. Vast and small, interlinked. Infinity in a seashell.

Adapted from THAT GOOD NIGHT by Sunita Puri, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2019 by Sunita Puri.

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B.C. man throws party as he undergoes medically-assisted death

‘The one thing that I don’t feel is loss,’ says widow

Musician Dan Laramie wanted lots of music at his party before he had a medically assisted death.

By Dominika Lirette 

When Dan Laramie died, he went out on his own terms — with music, whiskey and cigars.

“He really wanted a party,” said Stef Laramie, Dan’s widow. “He really wanted a celebration and I loved that idea. It just made it so great.”

The 68-year-old South Okanagan man had a medically-assisted death last Saturday at a close friend’s home in Keremeos, while surrounded by 50 friends and family. 

“We had to make sure that we got it out there, that people really understood that at this celebration it would be his last heartbeat and that he would be assisted in dying,” said Laramie.

‘Way too much’

About two months ago, Dan Laramie decided he wanted to have a medically-assisted death, Stef Laramie told Daybreak South‘s Brady Strachan.

Dan Laramie had diabetes since childhood, but the disease had grown worse and he was having problems with his blood pressure, kidneys and heart. 

Stef said Dan wrote 30 songs while he was in the hospital.

Last May, a surgeon told Laramie at an appointment that he’d have to amputate a couple of toes and he was immediately hospitalized. Laramie had an aggressive form of gangrene, which later led to other amputations including half of his foot and part of his leg.

“It got to be way too much. Right from the beginning he always said ‘I just don’t want them nipping away at pieces of me to try and save me if I can’t be saved’,” Stef Laramie said.

Dan Laramie’s condition continued to deteriorate at a rapid pace. There was calcification in his blood vessels, his organs were failing, and they realized his body was no longer able to heal at the rate it needed to for him to live.

Musician

Dan Laramie was a musician, so it was important to him that the final gathering with friends and family had lots of music.

Stef Laramie, who is a singer, said she and her husband once had a Karaoke band called K-town and a five-piece rock band called Lulu and The Lazy Boys.

“Dan was just an amazing guitar player. He could play rhythms, and leads, and bass, and all kinds of things all at once,” said Laramie. “When he was in the hospital he wrote 30 songs.”

One of the songs he wrote was about the nurses who cared for him, and they sang it at his party.

‘Just magical’

Dan Laramie’s friends, sister, son, daughter, grand kids and even some of his nurses all came to the party.

There was food, and single malt whiskey and cigars that an old friend brought for Dan.

“It was just magical how everybody looked after each other. People would burst into tears sometimes and somebody would just be kind and give them a hug,” said Stef Laramie

Stairway to Heaven

Towards the end of the night, Dan Laramie’s doctor and a nurse arrived to assist with his death. 

“You could see sort of an energy in the room where people could feel that it was time,” said Stef Laramie.

Once Dan Laramie signed the papers and said he was ready, his family gathered at his bedside.

Dan told his friends and family that when it came time for him to die, he wanted them to cheer and applaud, said Stef.

“I can’t even tell you how beautiful the look, the smile was in his eyes,” she said.

As requested, his friend, Michael Fitzgerald, played Stairway to Heaven, as the first needle was administered.

“Dan wanted applause…so oh my gosh did we ever clap and cheer,” said Stef Laramie.

“He was so ready and it felt like everything that we talked about… all these people coming, made it the absolutely perfect exit.”

Not sorrowful

“The one thing that I don’t feel is loss,” she said. “If he had died in a way that we had no notion of it, by surprise…then it would be sorrowful. But I don’t think dying should be sorrowful.”

After this experience, Stef Laramie said she learned that if you have a great life, death doesn’t mean as much. 

“You don’t have to let anybody start dying before they have left.”

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