Tag: Conscious Living

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The case for hospice care

By BETH SLEPIAN

A recent analysis published by the New England Journal of Medicine revealed that for the first time since the early 20th century, more Americans are dying at home than in the hospital.

According to the report, in 2017, 30.7% of Americans died at home, while slightly fewer (29.8%) died in hospitals. Another notable statistic from the study is that between 2003 and 2017 the number of Americans who died in hospice-specific facilities grew by 41%, from 0.2% of deaths in 2003 to 8.3% in 2017. According to the National Hospice and Palliative Care Organization (NHPCO), 47.5% of New Hampshire residents on Medicare who died in 2017 were receiving hospice care benefits.

This data does not come as a surprise to those of us who work in hospice care and have the honor of helping families navigate the end-of-life experience.

Up until the mid-1900s, it was routine for people to die in their homes, cared for and surrounded by loved ones, but by the 1950s, more Americans died in hospitals. The concept of “death with dignity” was introduced in the United States in the early 1960s, sparking the movement toward hospice care.

The hospice movement gathered steam in the late 1970s with the formation of the National Hospice Organization, and by the mid-1980s, the federal government formalized the hospice benefit for people on Medicare.

Concord Regional VNA has been caring for people in their homes for 120 years, providing nursing, therapy, personal care, homemaking and other services to people of all ages. For more than 30 of those years, we have provided specialized end-of-life care, guidance, and support to patients and families. In 1994 we expanded our hospice service by opening the first Hospice House in New Hampshire on Pleasant Street in Concord. We have served thousands of hospice patients and their families over the years, including nearly 1,000 patients in 2019.

While it is true that hospice care comes into play toward the end of a person’s life, there are many common misconceptions, such as:

■ Hospice care is only for the last few days or weeks of a person’s life;

■ It is only for people with cancer, people in severe pain or those who have a “do not resuscitate” order;

■ People on hospice do not receive treatment, they’re just kept comfortable with medication;

■ Hospice is a “place” where a person goes to die;

■ Hospice hastens death;

■ People on hospice must give up seeing their primary care providers;

■ Hospice care is focused on the patient and ends when the patient dies.

Hospice care is much more than meeting patients’ medical needs. Hospice care empowers patients to have a voice in their end-of-life experience, and to help them through it with as much comfort, grace and dignity as possible. It is about compassion – for them and their loved ones.

Some people choose to begin receiving hospice care in the final weeks or days of a terminal illness, but it is not unusual for patients to begin hospice care many months before they eventually pass.

People who receive hospice care through Concord Regional VNA benefit from individualized care coordinated with their care team, which may include their primary care provider and other clinicians. They may receive nursing care, physical and/or occupational therapy, pain management, spiritual care, social work , including emotional support and companionship – all in the place they call home, which could be a private residence, an independent living or assisted-living community, or a skilled nursing facility. Those who need more intensive care may opt to receive care at Hospice House.

Equally as important in this journey are the caregivers, who are most often the patients’ loved ones. Hospice care is about them, too. In addition to day-to-day assistance with patient care, loved ones may receive emotional and spiritual guidance and support from our counselors and spiritual care providers; help with end-of-life planning; much-needed respite care; and myriad other services. And it is important to note that hospice care does not end when a patient dies – our bereavement counselors and support groups help loved ones as they learn to cope with their loss for as long as they need us.

Hospice care is also about volunteers. The hospice movement was started by volunteers and they remain a crucial component to this day. In fact, Medicare requires that volunteers provide at least 5% of total patient care hours, which can take the form of direct support, spending time with patients and families, or performing tasks that support hospice care services. Concord Regional VNA is incredibly fortunate to have nearly 100 volunteers from the communities we serve who give their time and energy to our hospice patients and their loved ones.

So what does this mean and why does it matter? The recently released data suggests that more people have come to understand that receiving care in the comfort of home – in familiar surroundings, in proximity to loved ones and friends – is a preferable and realistic option. From a clinical standpoint, studies show that patients who receive hospice care live longer than those with similar diagnoses who do not receive hospice care. Receiving care at home also has a significant positive impact on overall health care costs.

Death is a fact of life. Patients often tell us that choosing hospice allows them to feel in control, and managing their symptoms helps them feel more at peace. Choosing hospice is not giving up, rather, it is choosing to live fully until you die.

It is not meant to be scary; it is meant to help people live each moment to the fullest and to pass with dignity and respect surrounded by love.

We at Concord Regional VNA are privileged to help patients and their loved ones navigate this journey, and proud to have been providing hospice service to the people of Concord and the 43 other New Hampshire communities we serve for more than 30 years.

Complete Article ↪HERE↩!

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‘It was kindness and it was a mercy’:

The doctor helping people to die

Oncologist Cameron McLaren

By Melissa Cunningham

It was just after 2pm on October 31 when oncologist Cameron McLaren arrived at Phil Ferrarotto’s house on the outskirts of Melbourne to help him die.

Dr McLaren had never administered a fatal drug to a terminally ill patient before. He was struck by the magnitude of what he was about to do.

“I had no idea if I was going to be OK with it even up to the point where I put the needle to his arm,” Dr McLaren said. “But there was no question that this was the right thing to do for Phil. It was what he wanted. It was kindness and it was a mercy.”

Phil hadn’t eaten for days. No longer able to digest his medication, the 70-year-old was hooked up to an intravenous morphine drip and sustained by spoonfuls of cola-flavoured ice.

He lay in bed with his daughter Katie and wife Dorrie curled up on either side of him. They cuddled his frail body and watched his chest rise and fall with each painful breath.

His son Glen and son-in-law Ryan came into the room with three glasses of aged Glenfiddich whisky; one for each of them and one for Phil.

They toasted Phil as Dr McLaren gently swabbed the father-of-two’s arm with medicinal alcohol.

Phil Ferrarotto

Dr McLaren found a vein and inserted a cannula. He used the thin tube to inject a sedative medication, before administering an anaesthetic and a muscle relaxant.

Phil began to drift off within minutes of the drugs flowing into his bloodstream. The circle of his family closed in around him. They held his hands and told him how much he was loved. “Be happy,” Phil said, before he took two final, deep breaths.

Dr McLaren has helped two dozen terminally ill Victorians apply for permits to end their lives since the state’s voluntary assisted dying laws came into effect on June 19. Eleven of them have since died using the legislation.

All the patients Dr McLaren has assessed so far were in intolerable pain and often bedridden.

“The number one reason people are doing this tends to be more the existential suffering,” Dr McLaren says. “It is the loss of joy, the fear of losing dignity and the fear of losing autonomy and of being a burden to family.”

Cancer-stricken patients surrender their bodies to years of treatment they know will cause them pain and discomfort, Dr McLaren said. He wants to give people control at the end of their life.

“It is one last decision about their body which is entirely theirs,” he said. “This is something we do for animals and when they get too old and they are suffering greatly. We put them out of their misery and we call it humane. Why shouldn’t we afford humans the same humanity?”

When Dr McLaren first met Phil he was sitting in an armchair in his living room hooked up to an oxygen concentrator. The cancer had spread from his bladder to his lungs and had riddled his bones. Then it invaded his liver, causing his belly to swell and fill with fluid. Opioids prescribed to Phil did little to dull his pain. Each breath was agony.

This kind, strong-willed, clever, retired general manager, who had battled four different kinds of cancers over the past 18 years, was frank and direct.

He told Dr McLaren he wanted to end his own life.

Dr McLaren carefully assessed Phil. He ticked off all the strict criteria; over the age of 18, of sound mind, an Australian citizen with less than six months to live. He referred Phil on to a second doctor who also deemed Phil eligible for the scheme.

Before his application was approved an email from Phil arrived in Dr McLaren’s inbox: “This gives me no pleasure in begging you to end my life, but I have no one else to turn to. I’m struggling with every breath I take and I can’t do it anymore.”

A permit for a doctor-administered death was approved the same day by the Voluntary Assisted Dying Board with Dr McLaren agreeing to administer the fatal dose.

For days after Phil died, Dr McLaren was waiting for the “hammer’s fall”.

“I was really concerned about the fallout for me, personally and emotionally,” he said. “I was concerned about being recognised as ‘that’ doctor and the impact it might have on my family and my work.

“I didn’t question what I did, because in Phil’s case, he was in the last days of his life and he was going to die within 48 to 72 hours. I was able to provide him a death that in his mind was dignified. It didn’t cost him anything. It cost him his suffering.”

The fallout never came.

“It was a lonely experience because there’s no literature review you can read on it,” he said. “It still does feel lonely because there’s not a lot of us doing it.”

The night Phil died, Dr McLaren picked up his two year-old daughter when he got home and held her in his arms. His love for his child overwhelmed him and he pressed his face against hers.

“As I was holding her I thought of Phil being surrounded by his family as he took his final breath,” he said.

“Nothing that we could have done would have avoided his death, but we were able to make sure Phil  died at home in the arms of the people who loved him most. I thought, yeah, that would be a nice way to go.”

Before he died, Phil wrote a letter to Dr McLaren thanking him for what he was doing:

Complete Article ↪HERE↩!

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The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

Complete Article ↪HERE↩!

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At this workshop, writing your own obit means analyzing your past — or future

By Liz Mayes

On a Monday evening in September, seven people gather at the Rhizome, a house that has been converted into a community arts space in the District’s Takoma neighborhood. They range in age from late 20s to early 70s, and come from an array of professions — nonprofits, woodworking, think tanks. They’re all here tonight for an unusual writing exercise: one where people — typically of the healthy, non-dying variety — hammer out the text for their own obituaries.

The group’s facilitator is Sarah Farr, 43, a trained death doula who provides companionship and guidance to the dying. In the spring of 2017, she formed Death Positive DC and began hosting regular events: “death cafes,” where people sit around and chat about death, often over cake; and obituary writing workshops like this one. (Death cafes are free or donation based; obituary writing workshops cost $10.) She also operates a Facebook group with about 600 members.

Farr opens the workshop by tracing the history of obituaries in American journalism and outlining their shifting cultural significance through major events such as the AIDS crisis and 9/11. She encourages the group to think about how the advent of social media and memorial websites like Legacy.com have changed the way deaths are reported. (She notes that two-thirds of people who die in America get a Legacy.com page.) She shares examples of funny, viral obituaries — one simply reads, “Doug died” — and dives into the ethics of adult children publishing unflattering obituaries of their parents.

She also brings up the role that race and gender have historically played in the obituary sections of prominent newspapers. She mentions the New York Times project Overlooked, which started in 2018 and features obituaries of women and people of color whom the newspaper neglected to write about when they died. (Entries include journalist and anti-lynching advocate Ida B. Wells, transgender activist Marsha P. Johnson and poet Sylvia Plath.)

Then, educated about obituaries and ready to craft their own, the participants are set loose. They wander to different corners of the house or outside to the porch — and they begin to write.

Obituary writing workshops are part of an expanding suite of events and activities that fall under the umbrella of the “death positive movement.” Based on the belief that cultural avoidance of discussing death is harmful, the movement encourages people to speak more openly about dying. It had been rumbling for several years before it gained a name and solidified into an official movement. In 2011, a man named Jon Underwood — who would later die at age 44 — held his first death cafe in his basement in London. He envisioned the meetings as a refuge from what he saw as a pathologically death-averse culture.

That same year, a mortician named Caitlin Doughty started a popular YouTube channel, “Ask a Mortician,” which she used to spread information about death acceptance and to combat death anxiety. It was Doughty who, in a tweet, coined the term “death positive” as a play on the phrase “sex positive.”

After Underwood and his mother published an online guide for holding death cafes, the idea quickly spread and was enveloped into the growing death positive movement. Since then, according to Death Cafe’s official website, there have been more than 9,700 death cafes held in 66 countries. Anyone can host their own death cafe, as long as they abide by the official guidelines set out by Underwood.

The movement is growing here in Washington as well. Farr has seen attendance at her death cafes rise markedly over the years. Her first death cafe, held in November 2016, saw about 15 attendees. Recently, her meetings have topped out at 50, even in the rain and during the cold winter months. She remembers that just two years ago, there were very few death cafes in the region. Now, the Death Cafe website lists up to four or five per month in the D.C. area.

After about 20 minutes, Farr calls the group back together. Attendees take their seats and Nadia Raikin, 60, volunteers to share what she’s written. As she reads, her dry, cool humor is palpable: “Well. I am dead now. But at least I lived for a while, which is better than nothing.” She pauses to smile as a chuckle goes through the room. “But I’m happy I got to experience life and that my mom, upon blessings of my grandma, decided to keep me. I was born out of a force of nature. I guess I died when nature or God called me back.”

An older man named Chris is next. “Chris lost his life in a car accident on November 1st, 2020, nine days before his birthday. He was 75,” he says as the others listen attentively. Tall with gray hair, he speaks in a gentle, straightforward voice, sketching out the story of life, marriage and work.

“He was a humorous, easygoing man who drank a little too much but never caused any trouble when the drink got the better of him. He always felt intense empathy with the underdogs of the world, which he felt a member of. But he was happy and comfortable with this identity.” He stops reading abruptly and looks up from the page. “Anyway, blah, blah, blah. What did you all think?”

After a few more people share their obits, the group breaks for another round of writing. For the middle-aged and younger participants, writing their own obituaries can be a forward-looking exercise. Jill Eckart, 40, says, “I took it as an opportunity to create what might be possible in the next half of my life. I have about hopefully 45 to 50 more years left. With the end in mind, what do I want that space to look like?”

By now, the sun has set behind the apartment complex across the street. Seated on the old wooden porch, Carter Rawson, 50, speaks of how the impulse to document his life seems to come naturally to him. “I’m biased because I’m a historian,” Rawson says. “I like to read about a life well-lived.” He continues: “I’m not the most interesting person in my family, and I’m never going to be. But if you go to a yard sale and see disembodied old pictures, you wonder what their lives were about. I just felt I would want to do someone the favor of actually giving a narrative — being that one photo that had a story taped to the back of it.”

“I loved it,” Farr says. “I think it could be a great jumping-off place for a memoir.”

Complete Article ↪HERE↩!

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‘I’ve been saying goodbye to my family for two years’

Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago

Joe Hammond with his wife, Gill, and sons Jimmy (left) and Tom in 2018.

By Joe Hammond

In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.

I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.

I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.

Hammond and his family at home last month.

I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.

I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

Complete Article ↪HERE↩!

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Machine Learning Could Improve End-of-Life Communication

Using machine learning, researchers were able to better understand what end-of-life conversations look like, which could help providers improve their communication.

By Jessica Kent

Machine learning tools could analyze conversations between providers and patients about palliative care, leading to improved communication around serious illness and end-of-life treatment, according to a study conducted at the University of Vermont’s (UVM) Conversation Lab.

Discussions about treatment options and prognoses amid serious, life-threatening illnesses are a delicate balance for nurses and doctors. Providers are communicating with people who don’t know what the future holds, and these conversations are very difficult to navigate.

Researchers at UVM wanted to understand the types of conversations patients and providers have around serious illness. The team set out to identify common features of these conversations and determine if they have common storylines.
“We want to understand this complex thing called a conversation,” said Robert Gramling, director of the lab in UVM’s Larner College of Medicine who led the study. “Our major goal is to scale up the measurement of conversations so we can re-engineer the healthcare system to communicate better.”

Researchers used machine learning techniques to analyze 354 transcripts of palliative care conversations collected by the Palliative Care Communication Research Initiative, involving 231 patients in New York and California.

They broke each conversation into ten parts with an equal number of words in each, and examined how the frequency and distribution of words referring to time, illness terminology, sentiment, and words indicating possibility and desirability changed between each decile. Conversations tended to progress from talking about the past to talking about the future, and from happier to sadder sentiments.

“We picked up some strong signals,” said Gramling. “There was quite a range, they went from pretty sad to pretty happy.”

Discussions also tended to shift from talking about symptoms at the beginning, to treatment options in the middle and prognosis at the end. Additionally, the use of modal verbs like “can,” “will,” and “might,” that refer to probability and desirability also increased as conversations progressed.

The findings reveal the importance of stories in healthcare for patients, researchers noted.

“At the end there was more evaluation than description,” said Gramling. “What we found supports the importance of narrative in medicine.”

The team is now focused on using the machine learning algorithm to identify the different types of conversations that can occur in healthcare. This could help providers understand what might make a “good” conversation around palliative care, and how different conversations require different responses. Providers could then match patients to interventions they need the most.

“One type of conversation may lead to an ongoing need for information, while another may have an ongoing need for functional support,” said Gramling. “So one of the ways those types can help us is to identify what are the resources we are going to need for individual patients and families so that we’re not just applying the same stuff to everybody.”

A deeper understanding of these conversations will also help reveal what aspects and behaviors associated with these conversations are most valuable for patients and their families. Educators could then effectively train providers to have the skills needed in palliative care.

Researchers believe that the most useful application of the machine learning tool could be at the systemic level, which could monitor how patients respond to providers in aggregate.  

“I think this is going to be a potentially important research tool for us to begin fostering an understanding of a taxonomy of conversations that we have so that we can begin to learn how to improve upon each one of those types,” said Gramling.

“We already measure other processes of clinical care, we just don’t do it routinely for actual communication.”

Researchers have recently applied artificial intelligence tools to the realm of palliative care. A study published in September 2019 demonstrated that a predictive analytics tool can help increase the number of palliative care consultations for seriously ill individuals, leading to improved quality of life for patients and their families.

“There’s widespread recognition of the need to improve the quality of palliative care for seriously ill patients, and palliative care consultation has been associated with improved outcomes for these patients,” said the study’s lead author, Katherine Courtright, MD, an assistant professor of Pulmonary, Allergy and Critical Care, and Hospice and Palliative Medicine.

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Thoughts for the living from one of the dying

Metaphorical lightning strikes everyone, but this bolt struck me. I’m not quite the hero about it, and don’t ask me to be.

By Eddie Ryshavy

Pancreatic cancer comes out of nowhere and changes your life in one sentence from your doc. In my case, he called me at home and said, “The CT scan showed a three-millimeter mass on your pancreas.”

Stunned, I felt like the judge had just pronounced a death sentence and my earthly status was unalterably changed.

With such news, you realize quickly that you are now different from everyone around you. You have no future. Your worldview changes dramatically.

Humans are the only creatures who can recognize and appreciate the end-of-life process. I’m not 100% sure at this point that it is such a great capability.

I know I can’t speak for everyone. But after talking to some others occupying a seat in the same boat, I thought some comments for the living from the afflicted might be useful:

I find that I crave normalcy. Even though you are sorry, you are not nearly as sorry as the person dying. Make it quick and get on with behaving normally.

Hardest thing — telling people, especially those who want to explore every cancer cell with you. In the past I enjoyed discussing all my age-related maladies as much as anyone. But once they put on the terminal tag it tends to dampen the fun a bit.

Please, please don’t tell me about this friend of a distant cousin who had exactly what I do and died of a lightning strike on the last mile of a marathon at 103.

If you are one of those folks generally known as a crêpe hanger, who gets their jollies by contacting everyone with even a vague acquaintance with the impending decedent, please limit your background information search to nonfamily members.

If you are a close relative or spouse, you should be aware that the soon-to-be departed will have some days when he or she is having a hard time playing the hero.

Oh, I know how to do it. I’ve watched most of John Wayne’s movies. But he died often and had directors coaching him. I’m just on my own and only have this one shot at it.

I can tell you playing the part occasionally gets tiresome.

I know you feel bad for me. I feel bad for me, too. But know I didn’t do this just to ruin your day. Don’t make me spend the next 20 minutes helping you feel good because I understand you don’t feel good about my situation.

Some feel compelled to make sure they have done everything they can to ease the journey into eternity. They sit down, hold both my hands, lock eyes, assume the countenance of a longtime hemorrhoid sufferer and grill me about their version of redemption. They then use their close association with the Almighty to broker a good plea bargain on my behalf.

I know they mean well. But so do I when I say: Please don’t.

We just finished “the meeting” with our kids. My wife is plagued by a penchant to organize anything and everything around her. She had prepared a working outline that dealt with everything from our current and projected financial situation to plans for her living situation after my approaching exit. Thankfully, the kids picked up on my need for normal human contact, and while the initial information we needed to impart evoked some tears as it highlighted the finality of my situation, we got through it fairly quickly and returned to what I considered an enjoyable lunch.

We are paid-up members of the Cremation Society, and my wife has pledged to place me in a cupboard drawer along with the envelope containing the remains of our beloved pooch, Cinder, until the day all three of us will share my eternal parking spot.

Having been a sympathy-giver in the past doesn’t make receiving it any easier. It’s hard not to be envious that everybody you know has a future and you don’t. It makes you feel isolated, and frankly irritated. It has always been difficult for me to receive favors from others. I suppose it’s the downside of being in control.

The impending loss of control and accompanying dependence on others is another difficult part of this pilgrimage. If I should not properly show my appreciation, please know that I do appreciate your kindness — and you — very much.

And then of course there is the matter of the wig. One feature of my final journey I have vowed to resist is the humiliation of complete baldness. I know it’s in style and that many guys look good that way. I also know I wouldn’t be one of them.

We purchased a wig the other day which, after the initial shock, takes about 50 years off my appearance. My coiffeur assured me that after the hair stylist she recommends finishes trimming down the wig, it will be more age-appropriate. Even so, everyone I know will be well-aware I have on a wig.

Who knows — maybe I’ll set a trend, or at least provide a few laughs.

Once your downward spiral toward eternity has been medically confirmed, you realize that this trip must be taken alone. Hard as it is to leave the kids, all parents are aware, and generally accept, that we will eventually precede them. I can find no fitting expression to describe the anguish at the thought of leaving my life partner, a bond in my case that has officially endured 62 years but unofficially since high school.

Heart-wrenching doesn’t come close, but it’s the best I can do.

All I can ask in the interim is that you please join me in making my interaction with you as enjoyable as possible.

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