Category: Philosophy of Living

Posted on

Can Doctors Find Better Ways to Talk – and Listen – to Patients Close to Death?

Two brothers are combining palliative care expertise, linguistics and AI to encourage more effective conversations between doctors and people receiving end-of-life care.

Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?

By Michael Erard

One afternoon in the summer of 2018, Bob Gramling dropped by the small suite that serves as his lab in the basement of the University of Vermont’s medical school. There, in a grey lounge chair, an undergrad research assistant named Brigitte Durieux was doing her summer job, earphones plugged into a laptop. Everything normal, thought Bob.

Then he saw her tears.

Bob doesn’t baulk at tears. As a palliative care doctor, he has been at thousands of bedsides and had thousands of conversations, often wrenchingly difficult ones, about dying. But in 2007, when his father was dying of Alzheimer’s, Bob was struck by his own sensitivity to every word choice of the doctors and nurses, even though he was medically trained.

“If we [doctors] are feeling that vulnerable, and we theoretically have access to all the information we would want, it was a reminder to me of how vulnerable people without those types of resources are,” he says.

He began to do research into how dying patients, family members and doctors talk in these moments about the end of treatment, pain management and imminent death. Six years later, he received over $1 million from the American Cancer Society to undertake what became the most extensive study of palliative care conversations in the US.

The resulting database contains over 12,000 minutes and 1.2 million words of conversation involving 231 patients. This is the basis of the Vermont Conversation Lab, which Bob created to analyse this data and find features of those conversations that make patients and family members feel heard and understood.

Brigitte’s job in the lab that summer was simple: listen to moments of silence and categorise them. The idea was that they could indicate emotionally charged connections between doctor and patient. Once the silences were coded, they would be used to train a machine-learning algorithm to detect them automatically – and, with them, moments of emotional connection.

You might ask what place algorithms could possibly have in this sensitive realm. The reality is that healthcare communication needs help, especially in palliative care, where practitioners seek to bring patients to their deaths as meaningfully and painlessly as possible.

In 2014, the US Institute of Medicine made improving doctor-patient communication a priority in its landmark study, ‘Dying in America’. An analogous publication in the UK, Ambitions for Palliative and End of Life Care, emphasised the need for patients, family and caregivers to have “the opportunity for honest, sensitive and well-informed conversations about dying, death and bereavement”. It reiterated that doctors need to make those conversations possible.

Most of the resulting communications training seems to offer scripts and templates to help doctors deliver bad news and make decisions with patients. But this is not enough. In this context, doctors really need to understand conversations more broadly. They need to appreciate everyone’s role in a conversation. They need to learn the ability to listen and be silent. They need to confidently recover from conversational missteps.

“Oncologists are in general very uncomfortable with this kind of thing. They want to focus on treatment, and they talk eloquently about different protocols and clinical trials,” says Wen-Ying Sylvia Chou, a programme director in the Behavioral Research Program at the US National Cancer Institute. She oversees funding on patient-doctor communication at the end of life. “But sitting in the place of being a listener is not something that clinicians are trained for or necessarily comfortable doing.”

End-of-life medical conversations also often involve language in extremis.

Enter Bob Gramling. Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?

Amiable and serene, wearing a bracelet of Buddhist meditation beads, Bob sees a big role for artificial intelligence (AI) that can detect and measure the features of clinical interactions that matter to patients, then report those measurements to numbers-oriented healthcare systems.

Once such technology is widely available, he says, “we can incentivise our hospitals to build systems to improve those interactions and reward doctors for doing it”.

§

“How are you?” asks the nurse practitioner, who’s just come into the patient’s room.

“Fine,” the patient says. She’s a 55-year-old white woman with stage 4 breast cancer. Neither she nor the nurse practitioner know that she’ll be dead in five days.

“No, you’re not,” the nurse practitioner retorts.

“Oh, a loaded question,” the patient laughs.

“It’s been a long – well? No,” says her spouse.

“No,” says the patient. “It’s a polite question, it’s a polite answer.”

This is a snippet of a conversation in Bob’s database that he played to his brother David, a linguistics professor at the University of Arizona. David recognised the dynamics of this specific moment. The people in that room hadn’t been talking about care or disease, but they had been doing something important in the conversation that would affect the quality of the care.

When the Gramlings’ father died, David flew home from a literature studies fellowship in Berlin. But years earlier, he’d been intimately involved as a caregiver, witnessing a “smörgåsbord of insane, irrational communication failures” with lawyers, nurses, nutritionists and priests.

For a year after their father’s death, the brothers were swallowed by family matters. As they emerged, they began talking about palliative care communication and linguistic research in healthcare settings, and began to collaborate professionally.

The most recent result is a book, Palliative Care Conversations, published in early 2019. It aims to show physicians how conversations work, such as how clinicians and patients often understand words and phrases differently. David looked at the conversations at a granular level, using the tools of a linguistic subfield called conversation analysis. He spent years listening to audio recordings of the conversations, noting moments worth closer analysis.

Meanwhile, Bob provided clinical details about medical culture. In the last few years, he has also hung out with jazz musicians, who are master communicators when they’re improvising, and visited the Stanford Literary Lab to see how digital tools can be applied to massive literary corpuses to understand patterns too diffuse for human readers to catch.

Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.

As the Gramlings note in the book, the above back-and-forth between patient, spouse and nurse practitioner is remarkable for a first exchange between strangers. They explain that’s because “the clinician is willing to risk conventional rapport-building pathways by contradicting the family member’s self-reported state of mind”. In other words, the physician has opened the door to a looser mode of relating – and it works.

Another conversation doesn’t go as well. It’s a “pragmatic failure”, as David would say.

“When I came in,” says the nurse practitioner, “I saw you were watching Scrubs.”

“Scrubs?” the patient says. He’s a 63-year-old black man with stage 4 kidney cancer, who will live for 135 more days.

“Have you ever seen Scrubs?” asks the nurse practitioner, who is white.

“Yeah,” the patient says. “No, I wasn’t watching Scrubs.”

As the exchange unfurls, it’s clear the patient and clinician won’t connect. The clinician then seems to want to force their way to the task at hand, and forget the small talk where rapport could be built.

“When you study communication in healthcare, you’ll see a lot of monologues from doctors,” Bob says. “I don’t mean that in an insulting way – it could be really good information.” In palliative care, he explains, conversations are different: “It might be just because it’s the nature of palliative care. It’s what we do and what our value is… there is a lot of turn-taking.” That’s another term he learned from his brother. It refers to the back-and-forth of conversation.

“This is not a clean, rational, logical experience that fits on an 8-and-a-half-by-11 piece of paper, it’s a human-engaged relational endeavour,” he adds. “If we’re going to develop metrics for that, we’d better be looking at both the beauty and the science from many angles.”

Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.

One study, by speech-language pathologists in the late 1990s, showed just how large these language challenges can be. They gave a battery of language comprehension and memory tests to 12 hospice patients: 11 of them couldn’t recall words, had difficulty understanding things and pronouncing words, and had difficulty remembering what was said to them. These symptoms get in the way of normal activities, like having conversations.

Even something as crucial as how well older patients can hear gets overlooked. In a 2016 survey of 510 hospice and palliative care providers across the US, 87% of them said they did not screen for hearing loss, even though 91% of them agreed that patients’ hearing loss impedes conversation and negatively affects the quality of the care they receive. Only 61% said they felt confident nonetheless that they could deal with patients with hearing problems.

The Gramlings pay a remarkable amount of attention to another factor: the pain, shortness of breath, fatigue and medications that can keep patients from communicating normally.

In his research, David has addressed what he calls “language in extremis”: what happens when people’s ideas about language and communication buckle under the strain of circumstances, as in multilingual experiences in Nazi concentration camps, or interpreting in border patrol detention facilities.

End-of-life medical conversations also often involve language in extremis. As cancer brings a person’s life near to its end, they may have lost some of their lifelong communicative powers to the disease or its treatments. They may have less ability to speak subtly and indirectly, which is important for politeness. Shallow breathing shortens utterances, and drugs may block word-finding. All of this reinforces an asymmetry in communication that doctors don’t always grasp.

At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make.

A physician might encourage a patient to speak openly, and indicate their willingness to listen, but in practical terms, “That gesture doesn’t quite work,” David says, and doctors need to understand why.

At the same time, people still hew to lifelong social conventions about being a user of their language. They might be dying, but “They don’t back away from their interactional responsibilities,” David says. They honour turn-taking; they don’t interrupt. They tell jokes, they use family language, and they create mini-rituals of inclusion and exclusion, often to deal with the communication asymmetries.

“If I were picturing the developmental arc,” says David, “it wouldn’t be coasting down into death. It would be all the way and sometimes heightened. The kind of complex literacy you need to use in a hospital setting in a serious illness, and managing all your oncological terms – it’s almost like the competencies themselves get expanded in this end of life.”

§

In his lab, Bob is examining even more fleeting aspects of conversations, such as pauses. It’s an interesting choice, because pauses might be considered as a sign that a speaker has lost their way or that an interaction is breaking down. On the other hand, pauses are easy to locate in the acoustic signals of recorded conversations. And they might indicate where someone is listening or about to say something important, so they might be a good thing.

Bob’s team used machine learning to identify pauses of 2 seconds or longer in spoken conversations, then human coders like Brigitte Durieux tried to categorise them, looking for ones that were more than just silence.

Because they didn’t have access to what the doctors or patients were actually thinking, they looked for the presence of emotional words and other sounds like sighs or crying on either side of the pause. Did a question about the quality of life, treatment hopes, prognosis or dying precede the pause? If so, the pause may have been because the doctor invited the patient to consider something.

The team found that during some of these pauses, some connection, shift or transformation was occurring. These “connectional silences” were rare. Out of a set of 1,000 clips with pauses, a mere 32 were connectional in nature. They were brief, as well, most lasting less than four seconds. But there’s still power in them.

The dynamics of a conversation change dramatically after such a connectional silence. Suddenly, a patient will be talking more than they did earlier. They’ll be directing the conversation, not the doctor. It’s as if the mutual agreement to pause for two seconds spilled into an agreement to shift roles.

“No, for some reason I guess I just in my head was gonna be on [chemotherapy] for the rest of my life and everything was gonna be hunky dory and…” a patient begins.

A 2.9-second connectional silence follows. The doctor inhales audibly, to signal they will respond, which makes the patient pick back up.

“You know. I knew early on, I mean you told me early on it’s not like and then this will be the rest of my life. Something, you know, might go down.”

The doctor responds. “Something. That can be a very hard thing to think about. That here we found something that’s helping but you can’t stay on it for the rest of your life.”

In other moments, the silence comes after a doctor has said something empathetic.

“It’s rare of me to tell somebody point-blank you’ve got to stop. However, I will say you have my permission to set limits,” the doctor says.

“Okay,” says the patient, then falls silent for nearly seven seconds.

His wife chuckles. “He can’t stand the thought of it. I can tell by his laugh,” then she laughs.

“I know he can’t stand the thought of it,” the doctor says.

“No, that’s okay,” the patient says. “I’ll get used to it.”

Or in another instance, the doctor tells a patient’s spouse, “what you feel is really hard. It’s really hard.” There’s a 2.8-second silence.

“I just wish he had a better quality of life.”

“I know, I know,” says the doctor.

Even though these connectional silences don’t happen often, Bob thinks they’re good linguistic markers of connection exactly because doctors don’t commonly use them. When someone good at monologuing and interrupting falls silent, it may mean they’re allowing something else to happen.

Bob surmises, “More often than not, the conversations that have a lot of space in them are probably going to lead to people feeling more heard and understood.”

§

Judy had a question. Having come to the hospital at the University of Vermont to recover from the flu, this elegant, 83-year-old woman was lying in her bed. Two doctors had come to her room bearing news. It was cancer, not the flu, and it had spread from her liver. She could undertake a course of chemo, or she could have her pain managed as she died.

She turned to her daughter, Kate, sitting beside her. “What should I do?” she asked.

When the doctors had requested this meeting, Kate had dropped everything to be there. It seemed unusually serious. Now she knew why. She wondered why she hadn’t seen the signs of her mother’s cancer. Judy’s skin had started to look yellow, she recalled. But instead of recommending a check-up, she bought her mother some pinker make-up.

In this pivotal conversation, the doctors presented the options but also wanted to know what was important to Judy. They knitted the science together with thoughtfulness and compassion. Kate was struck by their slow, almost languid approach to delivering the news.

Slowly it dawned on her that this was a conversation about her mother’s death. Neither of them had prepared for this. Not now, not so soon.

“It had the nature of a conversation with a clergyperson rather than a doctor,” she remembers. Pastoral kept coming to mind.

At the end of the conversation, one of the doctors gave her his card. It was Bob Gramling. Kate has since seen the bright blue spectrographs showing gaps in conversation – where the pauses occur. She thinks these are important moments as well.

“Where there’s silence, where there are gaps, that’s where the caring shows up,” she says. “I think it’s incredible work to point out to doctors there’s a lot going on in the silences.”

Bob and David have only scratched the surface of how these conversations work. So far they have only studied English speakers, for example; pauses work differently in other cultures, so they need data on those moments, too. And because their data comes from people with cancer, there’s a concern that the analysis may be skewed.

With cancer, says Wen-Ying Sylvia Chou of the National Cancer Institute, most patients have time: “They continue to be themselves and continue to be part of the conversation and any ongoing discussion.” With other diseases, though, there could be more risk that the person would “lose cognitive function or physical function”. In those cases, she says, conversations “would look very different”.

Healthcare’s use of natural language processing – technologies that treat language as data – is expanding, and the chances are good that research like that of the Gramlings will expand to cover conversations with people who have other serious illnesses.

What is a conversation?

Bob isn’t the only researcher exploring the use of artificial intelligence in palliative care. In 2017, James Tulsky, a palliative care physician at Dana-Farber Cancer Institute in Boston and a Harvard professor who studies health communication, stressed that “mass-scale, high-quality automated coding will be required” to give feedback that helps clinicians improve their expressions of empathy.

Tulsky turned to Panayiotis Georgiou, a computer engineer at the University of Southern California, to develop automated detection of emotional connections between doctors and patients. In 2017, a team headed by Georgiou showed that certain acoustic features of the speech of couples in counselling could be used to predict marital outcomes. What if algorithms could do the same for palliative care conversations?

“The technology in theory exists out there to do all this,” Tulsky says. “It’s just a matter of doing enough research, running enough iterative trials, training up the machines to actually get these algorithms trained well enough so you could apply them to more random talk.”

I ask Judy’s daughter Kate what she thinks of using artificial intelligence to enrich human connections. “I wouldn’t worry about the technology,” she says. “The more technology, the more sacred the conversation becomes.”

What does she mean? Anything that enables humans to use their voices more effectively with each other is a good thing, she explains: “It’s because of the increasing technology that the interaction becomes more wonderful.”

§

What is a conversation? It’s a setting where humans interact, often for a purpose but sometimes for none at all. People have to learn how to have conversations but when they become expert in their culture’s conventions, conversing becomes so automatic it feels natural.

Modern healthcare has hijacked conversation and made it a tool by which physicians can achieve their ends.

According to David, “The contemporary hospital still understands ‘conversation’ as ‘making a pre-determined X happen through conversation’.” This is a barrier in serious illness and end-of-life care, where the conversations need to be venues for figuring out what the X might be.

At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make. This may need a more natural conversation than a medical one, a conversation in which none of the participants may know what the outcome will be.

After all, these conversations aren’t just for doctors; they’re for patients, too. And family members, nursing aides, housekeeping staff. “There are a lot of human beings who have a vested interest in this other human,” Bob says.

There are critics who don’t think artificial intelligence and machine learning have a role to play in palliative care. Bob’s view is that shying away from analysing this kind of conversation in this way means that essential opportunities for improving it will be missed.

“It is helpful, as a discipline that has historically thought of communication as just the art of medicine, to actually think that, no, this is a science,” he says. And understanding that science could help us re-engineer the healthcare system to support more meaningful conversations.

He’s aware of the delicacy in institutionalising and commodifying a human interaction, though. “As a physician,” he says, “I was afraid of being a researcher that was going to oversimplify this kind of sacred experience into something that’s measurable and convenient and essentially meaningless.”

That’s where Brigitte Durieux struggled with her feelings as she listened to thousands of audio clips of pauses. In some conversations, people were laughing, but she was struck by the loneliness in others. She had begun to recognise patients’ voices and wondered what had happened to them.

“Nobody is perfect, but there are times when one realises there’s something that could be said to make this feel less like a loss,” she says. Sometimes she whispered under her breath something the doctors could have offered instead.

After Bob found Brigitte crying, he wrote an ethics proposal to the hospital so that he could introduce a new procedure into his lab. He borrowed an idea from the hospital’s palliative care unit, where staff gather every week to say the names of people who have died, then ring a singing bowl.

Now, at the start of every Vermont Conversation Lab meeting, a researcher reads the name of one of the patients from the database and rings the bowl. So far, they have gone through the list of names twice.

The ceremony helps, says Brigitte, because it reduces the guilt of turning a sensitive moment in someone’s life into a piece of data.

“What it does ultimately,” she says, “is recognise the humanity of things.”

Complete Article ↪HERE↩!

Posted on

Death Doesn’t Have to Be So Scary

Facing our own mortality becomes easier when we accept that it’s a natural part of life

By Bruce Horovitz

Since he watched his mother collapse and die, Richard Bridgman’s fear of death has left him emotionally paralyzed.

It was right around Thanksgiving—nearly 45 years ago—and Bridgman was sleeping overnight on his mom’s living room couch.

“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be OK. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”

Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Illinois, area, he has spent most of his adult years trying to cope with—if not overcome—his immense fear of death.

“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”

Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where communication is broken into 140 characters and six-second sound bites, our connection with each other is dissected into so many bite-sized morsels that discussion of death would seem an unwieldy topic of conversation.

“Everybody has a fear of death, no matter what culture, religion, or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death,” and founder of the Overcoming the Fear of Death Foundation and the nonprofit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”

But wait. What if death isn’t actually unhappy? What if it simply—is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to deal with death. That question was posed to him by Chin, whom he discovered via a Google search. Several supportive phone consultations with Chin—combined with a simple meditation process that Chin teaches—have helped to keep Bridgman’s fears under control.

“I spent so much money on psychiatrists and psychotherapists—none of them did any good,” says Bridgman. But Chin steered Bridgman toward meditation. “Meditation is better than medicine,” Bridgman said.

Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.

“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker, and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”

“Very few people die screaming. They just go to sleep.”

But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was 2 years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.

It was Authers’s grandmother—while dying from cancer—who taught her the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days, but her grandmother could sense her granddaughter’s terrible fear.

That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve.

“I was no longer afraid of death and dying,” Authers recalls.

Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.

Increasingly, however, Chin has found that millennials—more than any other demographic—fear death the most.

“It’s the downside of social media,” said Chin. “The bombardment and speed of communication lead to an overload that can trigger a fear of death.”

Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”

In times of political upheaval—particularly when people are reminded of their mortality—the fear of death increases, even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.

“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”

Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.

A terminally ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.

“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”

Complete Article ↪HERE↩!

Posted on

‘Happy to be out of the broken body’

One man’s journey to assisted death

Michael Micallef had lived with Huntington’s disease for nearly three decades. In July, he chose to die by medically assisted death in the backyard of a close friend in Toronto.

By Adam Carter, Kate Cornick, Paul Borkwood

As Michael Micallef’s body began to fail, a thought persisted in his mind — he didn’t want to die slowly, the way his father had.

For nearly three decades, the Toronto man had been living with Huntington’s disease. The hereditary, neurodegenerative illness had taken Micallef’s father about a decade before, and now, it was taking him.

As it progressed, his motor skills, speech, ability to read, and even Micallef’s ability to sleep were all faltering.

“He said he really [regretted] he didn’t have the courage to kill himself,” he said of his father.

That’s one of the reasons why on July 7, at the age of 69, the Toronto man and his wife, Vickie, held a party to celebrate his life before Micallef’s medically assisted death later that evening.

Surrounded by his closest friends and his wife of 48 years, Micallef got to say goodbye on his own terms during a party at his condo building.

Alongside dozens of guests, he enjoyed some of his favourite food — cinnamon buns, mangoes, and Whole Foods rotisserie chicken.

“This can be good for everybody. Not the result, but the process,” Micallef said. “Being able to have choices is extremely important to me. Not to others, but it is to me.”

According to the Office of the Chief Coroner, there were 1,593 medically assisted deaths in Ontario between June 30, 2018, and June 30, 2019.

Since the procedure was legalized in 2016, there have been more than 3,300 medically assisted deaths in the province, statistics show. The coroner’s office says that in Ontario, roughly 1.5 per cent of all deaths are now medically assisted.

It’s something Micallef considered ever since his diagnosis, nearly 30 years ago — but it wasn’t truly a possibility until the procedure became legal.

For Micallef and his wife, his decision to die wasn’t a cause for sorrow. His party was a celebration — of life, love, and memories made. There was a steady parade of hugs from well-wishers, along with hopes for an easy passage.

His brother, sister and cousins came. Friends surrounded Micallef to wish him well.

“I said to him, ‘Do you realize how lovely this is? Michael we are going to have a farewell party … when you go to wherever the next stage is, you’re going to know how people feel about you,'” Vickie said.
“This is a blessing.”

‘Little explosions’ in his brain

Micallef attended St. Michael’s College School through his teen years, where a voracious love of reading took hold, alongside a passion for competitive hockey.

Later in life, his job with furniture company Herman Miller had taken both him and his wife to England, Singapore and Michigan, before landing back in Toronto.

The pair did not have children. They had a large group of friends, extended family and associates all over the world.

In Micallef’s last days, he could barely read, or even sleep. He struggled to speak. His quality of life was plummeting.

Micallef’s wife, Vickie, said she said goodbye to him 10 years ago because his personality had changed. ‘The man I married hasn’t been with me for a long time,’ she said. The couple, pictured here in 2008, were married for 48 years.

“He told me, ‘My brain is starting to have little explosions in it and my muscles are starting to have little explosions,’ which means he’s going to the next stage,” Vickie said.

Huntington’s disease is an illness that causes certain parts of the brain to die, and results in physical, cognitive and emotional symptoms.

Patients lose weight, have diminished co-ordination, and difficulty walking, talking and swallowing. They can also face symptoms like depression, irritability, and obsessive behaviour.

Saying goodbye

According to the Huntington Society of Canada, people in advanced stages of the disease can no longer manage the activities of daily living, and need professional care.

Micallef wanted none of that.

“I think I said goodbye 10 years ago to Michael because the personality changed, so the man I married hasn’t been with me for a long time,” Vickie said.

Micallef’s family says he had a successful sales and management career. He was diagnosed with Huntington’s disease in his 40s. His father also had the genetic disease. After watching his decline, Micallef didn’t want to go through the same.

Last month, in a friend’s backyard in the city’s Leaside neighbourhood, a nurse injected Micallef with a sedative. Then a doctor administered a substance to end his life.

He died while reclining on a lawn chair, with his wife next to him.

“We had a lovely little chat before he left,” Vickie said.

“I know he’s in a better place. I know his fight — I know his pain — is over with.

“I tell people Michael’s soul is now soaring through the universe, happy to be out of the broken body.”

Complete Article ↪HERE↩!

Posted on

I will never forget my grandma’s last days, surrounded by people who were half shaman, half scientist, and all good

We expected Nana to die years ago. When she finally went, it was both sadder and sweeter than we were prepared for

By

I knew it was coming; I had known it was coming for years. I had seen my friends go through it, and I had spent many hours thinking deeply about what would happen. Comforted by theories on the nature of consciousness, seduced by feasible rationales for an afterlife, sobered by the practical science of what was really going to happen, I was prepared. And then she died.

My nana had been ill for a long time. Her final diagnosis, chronic obstructive pulmonary disease, came 12 years before she died, although the prognosis was no more than four. She had come close so many times that we had started calling her “the boomerang”. But when she went into hospital for the last time, although in our heads we constructed logical expectations of her coming back to us, in our hearts we knew she wasn’t coming home.

Losing someone close to you is something you can only really talk about once it has happened. All the cliches about grief that I had heard over the years became my reality. Half an hour after she died, my cousin Elliot and I sat in the hospital coffee shop, exhausted, paralysed, silently delirious, while a tiny white butterfly fluttered around our heads, flew a full circle above us and disappeared. Over the next week, the appearance of white butterflies comforted each member of my family at different times in some ineffable way. Despite our wildly varying degrees of faith, that delicate symbol soothed us with an understanding that she was OK: whether she was on a cloud with her brothers and parents, united on an unknown spiritual plane with a greater force as part of a universal consciousness, or just gone, she was no longer in pain.

It was very sad, of course, and that is the best it was ever going to be. The reason I say “the best” is that, if it were not for the acutely careful preparations of us all, including Nana, it could have been far worse.

Palliative care should not be as taboo or scary as it is to many of us. I would go as far as to say that it is the ultimate in wellbeing practices, when a person’s health has failed and all that can be done is care. The word “palliative” comes from the Latin pallium, a cloak, and in many ways this metaphor is apt. In the last days, a “syringe driver” delivered her a steady flow of morphine and anti-anxiety drugs that concealed the worst of her symptoms, shielded her from their effects, protected her from the pain, and even hid her from death for a few more hours or days. If she had not had that, she would have died of hypoxia on the Thursday, gasping violently for breath as she drowned in carbon dioxide that her lungs were too weak to exhale. Instead, she went on until the following Tuesday, my auntie’s birthday, not before she had me write in her card: “Life is worth living because you’re my daughter.” When she finally passed, it was a moment of peace.

(Note to doctors: if it could be called anything other than a “syringe driver”, I think everyone would be much happier. My bampy (grandfather) in particular was unnerved by the name and was initially convinced that it was going to speed up her death.)

On the Saturday, when we all first expected her to go, we played her favourite songs at her bedside: lots of Maria Callas and Ella Fitzgerald, and (who knew?!) Hot Chocolate’s No Doubt About It, a song that recounts Errol Brown’s alien visitation. We were gifted the time to rejoice with her in what made her joyful, emotional and eccentric. As she appeared to slip away, our tear-stained faces fixed around her in uncontainable smiles, sure that the hour had come, she boomeranged back again, just in time for The Chase.

Memories of moments in her final days are precious and I am gratefully aware of how lucky my family and I are to have had them. They exist because of palliative-care specialists. What a mystically unique role: part scientist, part shaman; half doctor, half priest; with careful words held equally as important as the careful drugs. Never hard-heartedly functional, and never “compulsively positive”, it is as if they are of the same station as midwives, just on the other end. I am profoundly moved by this practice. The UK is reportedly the best in the world at end-of-life care, which is cause to be proud, and there are calls from both the International Association of Research in Cancer and the World Health Organization to declare palliative care a human right.

As someone whose first close bereavement was sort-of-sweet-sad but without regret, I support these proposals wholeheartedly. I wish that all people could be treated with such deep compassion and humanity. I sincerely hope that, when it is my time to die, my family and I will be helped to prepare in the same caring, tender way that my grandmother and family were in Llandough on a long weekend in July.

Complete Article ↪HERE↩!

Posted on

Meet the former mortician who runs an at-home pet euthanasia business

By Ace Tilton Ratcliff

Derek and I stand in the driveway, hands clasped together. “May we end Jetson’s pain easily and quickly, and bring peace to the family,” I murmur. Derek squeezes my hand in amen, our rings rubbing metal against metal in our grip. I don’t believe in heaven or hell, but praying feels comforting. If there’s an afterlife where you get everything good your heart desires, surely dogs and cats have earned that reward.

“Let’s go do some good,” Derek says, his warm breath puffing clouds in the frigid nighttime cool.

“Let’s take care of this family,” I say at the same time. The bare skin of my shaved head chills as we laugh at our outburst.

Jill opens the door almost immediately after I knock. We’ve been friends online for years, but this is the first time we’ve ever met. Each plagued by rare chronic illnesses, our friendship was born on social media as we commiserated over being trapped in mutinous bodies. It fostered an intimacy that neither of us shares with many others.

We hug on the front porch, while Porkchop and Jetson, Boston terriers with big ears and even bigger personalities, weave between our legs in excitement. I know them from what feels like a million exchanged videos and photos. Porkchop is brindle and white, his gigantic ears pulling his eyebrows into a perpetual mask of concern. He’s always wearing a bow tie on his collar: always the gentleman. He’s also obsessed with balls in all forms: thrown, tossed, rolled, and — his very favorite — utterly destroyed.

Jetson’s abdomen has been invaded by cancer — “multicentric neoplasia,” in clinical vernacular. Jill and her parents have invited Derek and me here to euthanize him.

***

Derek and I co-own and operate an in-home pet euthanasia, hospice, and palliative care practice that serves Northern California’s Bay Area. Most of our work focuses specifically on euthanasia and the subsequent disposition of pets’ bodies. We also have a few patients we see to manage end-of-life care — making sure they’ve got the good drugs to stay comfortable when osteoarthritis has set in.

Derek’s a veterinarian and I’m a mortician who has shifted from human death care to pets. We started the practice two years ago after euthanizing our own dog, Harper, in our living room, though we’d assisted friends and family members through the deaths of their pets for at least a year prior to that. After having cared for Harper since puppyhood, I didn’t want to entrust her body to strangers, and we realized that the work was a calling after that experience.

Harper’s Promise isn’t a full-time job for us yet; the work is too variable and the cost of living here is astronomical. Some weeks pass with no calls, but occasionally we’ll pull back-to-back-to-back appointments with only enough time to stop for fast food in between. Derek still works shifts at a brick-and-mortar veterinary practice, and I’m perpetually freelance hustling as a writer and artist, to make sure rent gets paid. We dream of a future where this work occupies all of our focus.

The cost of in-home services are slightly more expensive than visiting a veterinary office, but not by much. I’m haunted by years spent working for a corporate funeral home, where I had to meet a quota on my contracts or face a pink slip. The idea of fleecing people who are addled with grief-brain makes me feel ill. In-home euthanasia consultations cost $375. Communal cremation with the remains scattered in the mountains runs $115, while individual cremation with a cedar urn and a metal plaque is $225.

We’ve euthanized animals ranging from a tiny guinea pig to a full-grown, 200-pound domestic pig. Inevitably, every few months, a client will pursue a unique form of memorialization; taxidermy is popular. Once, we helped ship a dog to be cryogenically preserved, his owner desperate for a future where they could be reunited. We don’t judge what the heart wants when overwhelmed by grief; we simply work to make it happen.

***

At the house, we enter the dim back bedroom, dominated by a bed draped with a white comforter, contrasted with a startlingly red towel spread flat. On the dresser beside the bed, a digital screen scrolls through photos of Jetson. My memory is jarred — back to the mortuary and the ubiquitous slideshows that have become a routine part of directing funerals. The simultaneous experience of now and then is disorienting, but working in death care necessitates compartmentalization. I tuck that feeling into a box in my heart and focus on the work to come.

Jill’s mother, Kathryn, is also chronically ill. Jetson is her service dog, and at only 9 years old, his death strikes an unexpectedly early blow. The average Boston terrier lives to about 13. Jill and Kathryn seem resigned to the grim reality of their decision. They’ve done the research, spent hours on the phone with us, exhausted their vet visits and medical options. It is unfair, but there is a breeze of relief in the fact that dogs seem to have no concept of the impossible decision their humans have to make. They just want to lick your face and be loved by you.

As Derek prepares the first injection, a mix of sedatives, opiates, and antianxiety medications intended to relax Jetson into near-sleep, the family shares stories about adopting him. The medications usually take between two and 15 minutes to fully kick in, pets slipping into sedation as easily as they doze off in a sunbeam. Clients will often use this time to ply their pets with snacks as they share stories with us. One dog devoured an entire rotisserie chicken, bones and all, before succumbing to sedation. Big Macs are also a popular choice.

While Kathryn and her husband, Bryan, tell stories about their beloved dog, Derek slips the sharp end of the needle between Jetson’s shoulder blades, depressing the plunger and emptying the syringe. Jetson doesn’t even flinch.

Jetson wobbles when the meds make him sleepy. We move him on top of the red towel, and his head lolls, his big tongue floppy and loose. He gazes around the room, making direct eye contact with each of us. Bryan cries, cupping his hands around Jetson’s head and leaning against his muzzle.

Jetson licks my hand when I reach out. It feels as though he’s looking straight into my soul. It’s been a long time since I’ve felt the specific, quiet intensity of grief, an emotion that imbues funeral homes like spritzed perfume.

Jetson breathes steadily into the sedation. Jill sits on the bed beside him, Porkchop bundled beneath the covers and leaning against her. Derek holds my hand as we lapse into silence. My other hand rests lightly on Jill’s back as she touches Jetson and holds Kathryn’s hand; Kathryn holds Jetson, her fingers overlapping with Bryan’s. It feels sacred, existing in this veil between the worlds of the living and the dead, all of us connected as Jetson’s heartbeat slows.

When the medication makes Jetson’s eyes close, Kathryn reaches over to her bedside table and lifts up a small jar. “I saved the very last of the hand lotion I wear all the time,” she explains to Derek and me, unscrewing the cap and using one finger to scoop. She spreads the lotion across her hands with a deft, practiced motion. “I wanted it to be the last thing he smells.” She gently runs her hands over Jetson’s face and body, suffusing him with her scent as he lays relaxed. She lowers her voice, and though we can all hear her in the small room, the words are only for him. “Don’t forget this smell, Jetson. Don’t forget to find me.”

When the part of Jetson’s brain that recognizes us and responds to stimulus has gone quiet, I circle my right hand around Jetson’s thigh, watching the vein cast a shadow as it rises. Derek places the needle of the broad barrel of viscous pink euthanasia solution in the raised vein. The flashback of blood in the syringe is short and small. The headlamp encircling Derek’s forehead illuminates a full-moon halo against Jetson’s fur.

Because he’s so sick, his blood pressure is low. The vein blows; we waltz smoothly into new positions, shifting to Jetson’s front legs. Derek’s movements are efficient. This time, as the needle slides into Jetson’s flesh, the flashback of blood is a bright firework. The overdose of anesthesia slides in without resistance. Jetson is gone before Derek is finished, his heartbeat stopping beneath our collective palms.

When we are done, a tiny slip of pink tongue shows between Jetson’s lips. His body twitches and dances beneath Jill’s steady hand, a tarantella of nerves spasming with the last offshoots of his body’s electricity, even though his spirit is no longer there. I look up and see a photo of Jetson emblazoned above the bedside table: proud and handsome on a sand dune, his mouth open in a wide, happy pant.

We step outside of the room to let them sit with Jetson’s body. My hands shake as I trim roses from their stems to tuck around Jetson’s body before we leave with him. I can’t help but think of Harper again. She was the beginning of our mission, the connection we forged in that sacrosanct act, as we took the life that was already slipping away from her.

***

Harper had screamed a dramatic overreaction through the snap-pop first injection, as though we were killing her — which we were, but we didn’t want it to hurt. She took the sedation like a tank, eyes open and flickering long after she should have been peacefully whisked away in a hydrocodone dream. Waiting for the meds to kick in, I ran my hand over her flank while she panted, murmuring song lyrics to the top of her head because they say hearing is the last sense to go. After the final injection, I knew she was gone, even though her body was still warm beneath my hands and her tongue was twitching between her canines. She fought to the very end, and I was grateful to finally grant her peace and relief.

At first, euthanizing her felt like stealing something from her, like we should have let her body make the decision. But her broken heart was pumping harder than it should have to keep her alive, and the overexertion was eating away at her muscles. The meaty hocks I always swore teasingly I’d eat in an apocalypse had become easy for me to wrap my fingers around. Her hacking cough, her exhaustion, the image of white fur flopped on the cool tile. Her body told us it was either euthanasia or an inevitable, slow, painful collapse.

That day is divided into two sections: Harper’s death, and everything that came after.

After six years as a mortician, I was comfortable with the paperwork, with carefully winding our way between the gravestones that interrupted long stretches of grass at the pet cemetery, and with Derek asking if the smell of burning meat coming from the crematory was Harper’s body. (It was.) I knew what the door of the crematory would look like as it trundled up, how her limp body would flop when I lay her gently inside the retort, how her fragile bones would crumble into dust beneath the bristles of the broom sweeping her out after we returned an hour later.

But I was still surprised when my heart lurched in my chest as we got home and saw there were two leashes hanging beside our front door and only one dog to walk. The same tiny earthquake wound a hairline fracture through my heart at seeing two white bowls stacked for dinner but only one mouth to feed.

Harper was half of the furry brigade that undertook the hard work of keeping me afloat in the years after I was forced out of the mortuary industry because of my Ehlers-Danlos syndrome diagnosis. A rare connective tissue disorder, the disease causes my body to create collagen incorrectly. Collagen serves as the brick and mortar of the body. Symptoms are unique to each patient, but I deal with a myriad of issues, including unexpected joint dislocations; dysautonomia, which causes me to faint from standing for too long; and endometriosis, which invaded my abdomen and necessitated a hysterectomy. I’ve had at least a surgery a year since I was 26, and since the disease is degenerative, it’s only going to get worse.

Frightened I might injure myself, frightened of the lawsuit that would surely follow, and frustrated by the time I needed to take for doctor appointments and surgeries, my managers illegally limited my responsibilities and cut my hours. My last paycheck dipped below $1,000, barely enough to pay rent and definitely not enough to cover my copious medical bills.

Becoming a mortician had been my childhood dream; I read books about ancient Egypt and mummification. In my early 20s, I’d fought through an abusive marriage and the pain of my undiagnosed disease to graduate from mortuary college and complete a grueling two-year apprenticeship. I became a licensed funeral director, embalmer and crematory operator, and I was damn good at the work. I loved being able to make someone’s worst day ever at least a little bit easier. I’d expected to make a lifelong career working in the funeral industry, not to be forced into retirement well before I turned 30.

The death of my career had neatly followed divorcing my abuser. Losing it all in one fell swoop left me wild with grief, my bereavement all bared fangs and sharpened claws. I was plagued by debilitating panic attacks and existential terror about my own death. I was afraid my ex would show up unexpectedly, battering down the front door, his hands around my neck.

But Harper made me feel safe. The length of her furry form was always pressed tight along my thigh, her long, pink tongue licking away my tears. Tangling my fingers in her white fur brought me back to myself when I was spinning out. The necessary routine of feeding and walking her kept me grounded.

By the time I eventually met Derek, my life had become more balanced. Sure, I wasn’t doing what I loved anymore, but at least I hadn’t been swallowed into the black hole of my hurt. One day, Derek brought home his stethoscope so I could hear the comforting drumbeat pulse of Harper’s heart. I couldn’t identify the subtle lub-swoosh, lub-swoosh as a portent of congestive heart failure, but Derek could. Harper’s illness was terminal; death was not a matter of if, merely when.

The idea of bringing her to a clinic for euthanasia, giving her over to someone we didn’t know, never occurred to either of us.

Before the euthanasia, we had a new tag made for her collar, one with Derek’s last name on it too. She was part of our family. We took her out for a burger and a cup filled with whipped cream, and snapped photos of her with the redwoods as a backdrop before she was exhausted. When she was gone, we arranged her body in a cremation casket, white fur bold against a pink towel. Beneath her paw, I slipped a bouquet of pink roses, white Peruvian lilies, and a bone.

Later, after driving back from the crematory, as I cradled a small wooden box in my lap instead of my dog, we parked outside our apartment. Sunshine streamed in through the windshield and the sky was so blue it almost hurt my eyes. Derek cut the engine, and we sat in silence for only a moment before I turned to him and we spoke.

“I don’t know why we never thought about this before …” he started, glancing at me.

“We have to do this for other people,” I finished. “This was the best way for the worst thing ever to happen.”

“At home, in our arms, surrounded by familiar scents and sounds? Yeah, that’s how I wanna go.”

He nodded, and from the promise that a dignified death is an important part of a good life, our practice, Harper’s Promise, was born.

***

Jill and I sit together on the bed, swaddling Jetson’s body with the red towel and moving him over into a small basket Derek and I brought. We tuck the trimmed blooms of yellow roses around him, the color of friendship. Kathryn steps inside the bathroom to sob and collect herself, but her face lights up when she returns. She slips outside to collect rosemary and lavender from the yard in a small, fragrant bundle that she places beneath Jetson’s paw.

On the way out, Jill hands me a brown bag with a white envelope stapled to it, a thank-you card and home-baked dog treats for our pooches. Reading it out loud as we pull away from their neighborhood, I burst into tears. Derek holds my hand, and again we are connected — in this moment of service, this kindness, in Jetson’s death.

After the long drive home, Derek lifts the basket out of the back seat where we have it buckled in. Looking down at Jetson’s body, Derek’s eyes crinkle, clouding with tears. I love that even though he has carried a syringe full of Euthasol for an uncountable number of pets, he’s crying in our front yard over Jetson. I am more used to being there in the seconds after the grim reaper has left the room, curtains still wafting from his exit. It’s so strange that now the reaper comes in the form of this beneficent man I sleep next to at night.

Heading inside, I notice a text from Jill to both of us. “This is the first time I haven’t heard my parents bawling since we got the news about Jetson’s diagnosis.” I feel the acrid sting of tears rise again.

I have missed the way it feels to shepherd a family through the tumultuous experience of death. There is nothing quite like being the guiding light through this storm, basking in the deep sense of contentment combined with the adrenaline rush of success. When I left the mortuary, I had regretfully accepted the hurt of knowing I wouldn’t do this work again, yet here I am. I feel like I have stepped back onto the ferry, wrapped my hands around the rowing oar and felt the gentle waves of the river Styx lapping against the hull.

Complete Article ↪HERE↩!

Posted on

Physician-Assisted Dying…

Even When Legal, Difficult to Achieve

By Roxanne Nelson, BSN, RN

When Maine passes a law allowing physician-assisted dying (PAD), it will be joining nine other jurisdictions in the United States.

By October, one in five Americans (22%) will have a law that allows terminally ill patients, most of whom have cancer, to choose an end to their life with medical help from a doctor.

However, the practicalities of actually doing so are formidable, and patients who choose this option find there are many obstacles in the way.

First is finding a doctor who will participate. Many doctors have moral objections to PAD, refuse to participate, and will not refer patients.

This sounds familiar to Charles Blanke, MD, professor of medicine at the Knight Cancer Institute at Oregon Health and Science University in Portland, who has been participating in PAD since it was legalized there in 1997.

Blanke says patients have told him that after being turned down by their physician, they also were not given a referral; instead, they were told by their doctor that “they don’t know anyone, and good luck finding someone.”

I believe this is patient abandonment.
Dr Charles Blanke

“I believe it is patient abandonment,” Blanke told Medscape Medical News. “For some patients, it takes them months to find me, so it’s no wonder many are too ill by then to proceed.”

In general, eligible patients say that PAD was not offered to them, Blanke said, but he argues that “it is legal and should be put on the table.”

He emphasized that physicians should never be pressured to participate in PAD, but they should refer patients. “We need to make it more patient friendly and more accessible.”

For years, Oregon was the only state that allowed the practice.

In recent years, however, other states have passed similar laws — Washington in 2008, Montana in 2009, Vermont in 2013, California in 2015, Colorado in 2016, Washington, D.C. in 2017, Hawaii in 2018, and New Jersey just a few weeks ago.

Lack of Training

That some doctors do not want to participate in PAD is understandable; many have moral objections to the whole idea, citing the Hippocratic oath to ‘do no harm.’

But there are signs of a shift toward more acceptance.

For instance, a 2018 Medscape ethics report found that 58% of doctors who responded to the survey said physician-assisted death should be available to the terminally ill, similar to 57% in 2016, and up from 54% in 2014 and 46% in 2010.

However, doctors who are willing to participate find it difficult to do so.

“The law makes no provision for medical training, there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal,” said Lonny Shavelson, MD, a California physician based in the San Francisco area who specializes in aid in dying. He founded Bay Area End of Life Options in 2016.

“I agree that sometimes there is a moral objection, and there is sometimes institutional resistance, but most commonly it is lack of training,” he said.

Doctors, as a rule, like to do things they’ve been trained in.
Dr Lonny Shavelson

“Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in,” he added.

He noted that his practice has received more than 800 requests for medical aid in dying from different patients throughout California.

“Every patient who comes to us does so because they can’t find another doctor,” he said. “Everyone thinks it’s because of moral objections or that the patients live in rural communities, but it’s not the case for most of the patients.”

Shavelson told Medscape Medical News that he always calls the patient’s doctor, and most of them are not morally opposed to participating in PAD. “But what they tell me is that they’ve never been trained and that they don’t know anything about it. They don’t know what medications to use, or anything about the paperwork or protocol,” he said.

Barriers To Access

“The great news is that we have 22 years of data in Oregon, and the law is protecting patients,” says Kim Callinan, CEO of Compassion & Choices, the largest national advocacy group for aid in dying.

“But we also have robust data showing that the law is not meeting its intentions and that we have erected too many barriers for many to access it,” she told Medscape Medical News.

Callinan believes that improvements are needed to allow the original intention of the law to take place. “We want to keep the right safeguards in place,” she said. “But we are seeing such small numbers of people using it, and in many cases it’s because they can’t get access.”

Recent reports confirm that the number of patients who have chosen PAD — and who have completed the process — remains small.

For example, data from Oregon show that from 1997–2018, prescriptions have been written for 2217 people, and 1459 patients have died from ingesting the drugs.

In California during a single year (2017), 577 individuals received prescriptions and 374 people died after ingesting the medication.

Shavelson feels the actual demand for PAD is not reflected in the current statistics, and the numbers would probably be much higher if there was more access to physicians.

He argues that a more accurate survey would be to identify how many patients have requested PAD but could not find a physician to help them, he said. Shavelson believes that number would be significantly higher than what has been documented.

Institutional Barriers

In some cases, it is not the physician making the decision but the healthcare system.

A recent survey of 270 California hospitals, conducted 18 months after implementation of the state’s End of Life Option Act, found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).

“We found that of the 164 hospitals in California that opted out, 56% allowed physicians to refer patients to another provider and 29% of hospitals did not provide any guidance on this question,” said lead author Cindy Cain, PhD, assistant professor in the Department of Sociology at the University of Alabama at Birmingham.

“I support the idea that a health system can opt out,” says Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center, a nonpartisan, nonprofit organization. “As much as I don’t like it, and think physicians should be free to practice, the health system has that right to do so,” she said.

However, not referring patients is an entirely different issue. “The outright act of refusing to refer a patient puts the physician into an ethical quandary,” she said. “Referral is part of how medicine is practiced, but it is up to the individual physician to make that determination.”

Waiting Times Present Another Barrier

The whole PAD process requires two oral requests with a waiting time of at least 15 days between them, and also a written request using the statutory form included in the state’s aid-in-dying law.

There are slight variations among states (eg, Washington, DC also requires two witnesses). Many states also require a second waiting period, in which the physician must wait 48 hours from the time of receiving the written request to write the prescription.

Callinan believes that the waiting periods, as well as the need for two doctors to confirm eligibility, are redundant in some cases. “The eligibility is that a patient has 6 months or less to live, and 2 doctors have to certify that,” she said.

“But if someone is already enrolled in hospice, as many are, it has already been determined that they meet the 6-month criteria and that the decision has been made to forgo treatment. In this case, they should only need one doctor to authorize it,” she argues.

A new law in Oregon may cut some of the waiting time, as it allows physicians to make exceptions to the waiting periods if the patient is likely to die before completing them.

“Oregon law has not evolved since it was written 20 years ago,” said Blanke. “This new bill will eliminate the waiting period for those who are imminently terminal. It won’t affect very many people, but it will help a few get quicker access.”

Shavelson praised the new Oregon law. “I think the 15-day waiting period is obscene because it’s not 15 days,” he said, explaining that it may be more like 3 or 4 months, as patients have to find a doctor and then may have to wait weeks for an appointment.

“The idea was that it was supposed to be a period of contemplation, but many patients have been contemplating since they got their diagnosis,” Shavelson pointed out. “They didn’t start thinking about it when they first made their request — they have been thinking about this for a long time.”

Patients in this waiting period may be dying or losing the mental and/or physical ability required for self-administration of the drugs, he explained. In his own clinical practice, about 30% of patients die during the 15-day waiting period, he estimates.

This is a similar proportion to that found in recent study from Kaiser Permanente Southern California, where one third of patients became too sick or died before the process was completed (JAMA Intern Med. 2018;178:417-421).

Accessing and Taking the Drugs

Even for patients who do manage to get through the bureaucracy, there are challenges in the practical steps of actually obtaining the drugs. A physician can only write the prescription and it is up to the patient to procure the drugs.

When states began to first legalize PAD, the drugs of choice were oral pentobarbital and secobarbital. However, as of 2015, both of these drugs have been largely unavailable, as previously reported by Medscape Medical News.

Through trial and error, a group of physicians eventually developed a drug regimen (DDMP2), which contains diazepam 1 g, digoxin 50 mg, morphine 15 g, and propranolol 2 g. It is more complicated than the barbiturates but has been found effective.

Shavelson explained that an updated version known as D-DMA (no propranolol and amitriptyline 8 g added), which is both faster and more reliable than all other protocols, is in the process of replacing DDMP2.

Both formulations are compounded by a pharmacist and available as a powder, which then must be mixed with 4 oz of apple juice and taken as a liquid/suspension.

Shavelson noted that physicians may not know where a patient can fill the prescription.

“It’s not something that can be filled at the local CVS or Walgreens,” he said. “A regular pharmacy doesn’t have the ingredients on hand, and for the DDMP2 combination, it has to be compounded.”

In California, two pharmacists currently fill about two thirds of the prescriptions. “Pharmacists need training as well,” Shavelson contends. “They are an integral part of this process.”

Even the last step in the whole process, the actual ingestion of the drugs, can be difficult for some patients.;

State law requires that the lethal dose be self-ingested via the digestive tract (orally or through an nasogastric (NG) or gastrostomy tube). The restriction that the drugs must be self-administered was to help ensure no one could harm a patient against his or her will.

However, many terminally ill patients are so sick they can’t physically mix the solutions, pick up and take the medicine, or swallow the drugs. Blanke estimates that around 10% of the patients he has evaluated have swallowing issues, and they fear that they will be unable to swallow the medications when they are ready to die.

To get around these practical difficulties, a proposed bill in Oregon sought to allow patients to self-administer intravenous drugs.

“There are many people who cannot swallow or administer through an NG tube, so just pushing the button on a pump syringe would allow them to take the medication,” said Blanke. “The IV could be put in right before they used it.”

Putting in an IV is easier than an NG tube, he explained, and much less invasive than a gastrostomy tube. “There’s really no difference between them, as far as putting medication in,” Blanke said. Both require some intervention and hold the same risk that someone else can administer the drugs.

Although the bill passed through the Oregon House of Representatives, it stalled in the Senate and has not moved forward. Some opponents of the bill feared that it would move Oregon closer to allowing euthanasia, while others cited the high cost of pump syringes.

Blanke believes that much of the opposition was really directed at the concept of assisted dying. “The arguments were with Death with Dignity,” he said. “Not the idea of making changes in the law or the use of an IV.”

The practical difficulties of PAD in the United States contrast with a much simpler process in Canada. Since 2016, Canada has legalized medical assistance in dying, which allows for both physician-assisted euthanasia and self-ingestion of a lethal dose. Patients have overwhelmingly selected physician-assisted euthanasia, where the lethal dose is administered intravenously by a clinician. According to Health Canada, of the nearly 7000 Canadians who have chosen to end their lives since the law went into effect, only six people have opted to self-administer drugs.

Physician Education and Training Needed

The biggest barrier — and the most imperative need — is physician education and training in PAD, argues Shavelson.

“Traditionally, teaching happens at large institutions, medical schools, universities, academics — but they won’t touch this,” said Shavelson. “They don’t want their reputation so-called ‘sullied,’ and are frightened that their reputation will take a hit. I don’t think that’s true, and I think people would feel that it’s a good thing to have medical centers more involved in this.”

Academia has fallen down on their responsibility, he contends. “This is a legal medical procedure and there is not one medical institution in my state [California] that is doing formal training on this. It’s not part of any conferences or any continuing medical education.”

As an example, the University of California, San Francisco, forbids palliative care residents and fellows from participating in aid-in-dying practices. The end result is that there are palliative care fellows coming out of training who have no experience in this area.

“Their patients will be asking about it, since palliative care doctors get asked about it more than any other specialty except for oncology,” said Shavelson. “So we will have palliative care and hospice doctors who have no training in it, and that’s absurd. This is part of the realm of what they are going to have to deal with in their practice, and institutions have forbidden it.”

However, next year the first conference for clinicians on medical aid in dying will be held in Berkeley, California, and will really delve into the nuts and bolts of practicalities, Shavelson explained. “The topic has come up at conferences, and there have been other gatherings to discuss it, but the focus has been on policy and ethics.”

This new meeting, called the National Clinicians Conference on Medical Aid in Dying, will provide an opportunity for clinicians to learn about bedside practices and share information.

“We need this clinical conference,” Shavelson added. “We are going to make education happen.”

Complete Article ↪HERE↩!

Posted on

3 Benefits Of Thinking About Your Mortality At Least Once A Day

By Shoshana Ungerleider, M.D.

As a culture, Americans—more often than not—have a tendency to avoid thinking and talking about death and dying. Yet pondering our mortality can have a profound impact on our lives.

Our health care system is set up with a single, default pathway for all medical care: aggressive, invasive treatment, no matter how old or how sick you are. For some people, this makes perfect sense and can save lives. For others, a different approach to care is required. But it starts with having a relationship with our own mortality and reflecting on what matters most in our own lives. I have seen far too many people suffer by receiving treatment that is not in line with their goals and values.

In our modern era of fast-paced life, constant digital connectedness, and a culture striving to be “doing” all the time, it’s easy to get caught up in things that don’t matter. If we can reflect on the bigger picture in life, the preciousness of each moment, we can more easily let go of things that aren’t important. I believe there are three key benefits to thinking about our mortality at least once a day:

1. You’ll be motivated to leave a legacy.

Ask yourself, what do you want to leave behind? The idea of legacy awareness is a way to connect with our own mortality as it relates to our work, loved ones, and creative endeavors. If we think about legacy as a means to transcend death, we may be more likely to invest in our health and personal development throughout life. 

Artists, for example, live on long after they’re gone thanks to their creative legacy. That’s just one way of forming a legacy. Whether you are creating art, giving back to your community, raising a family, or making a positive impact on the lives of others, these are all powerful ways to leave a legacy for generations to come.

2. Life will instantly feel more precious.

Too much of a good thing decreases its value. Life is precious. It’s also temporary. Even when you’re young and healthy, your life could end unexpectedly at any time. Recognizing that life is fleeting helps us find joy and meaning in the small things—sunset and sunrise, a smile on your child’s face, a tree in the park—that sometimes get lost in the day-to-day. The people in your life can take on a new value because we realize that their lives are also temporary.

3. You’ll learn not to sweat the small stuff.

Thinking about our mortality can serve as inspiration to think more holistically about what it means to live our best life. In other words, it can move us to exercise and eat well because we only get one body. And at the same time, it’s an invaluable reminder that we only get one life, and we better enjoy it. So many of us are on a quest to find balance in our lives and define our own priorities. Remembering that we have this one life to live can help when weighing where we want to put our energy and attention.

Countless psychological studies have shown that a recognition of our own eventual ending can allow us to live a richer life—one filled with gratitude, presence of mind, and happiness. As you go through the checklist of factors contributing to your overall well-being—getting quality sleep, eating healthy food, exercising regularly, and sustaining meaningful relationships—make sure that forming a relationship with your own mortality is high on the list.

No one knew how important this practice was better than Apple’s Steve Jobs who, during his 2005 commencement speech at Stanford University, said, “Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important.”

If contemplating your mortality triggers fear, consider this.

Does thinking about our own death trigger fear? According to the 2017 Survey of American Fears conducted by Chapman University, 20.3% of Americans are “afraid” or “very afraid” of dying. While for some, fear of death is healthy as it makes us more cautious (such as wearing seat belts and minimizing high-risk behaviors), some people may also have an unhealthy fear of dying, which interferes with their daily life.

Psychologist and spirituality expert Stephen Taylor looked at those who lost loved ones, and many tend to have a more accepting attitude toward death. This may result from “post-traumatic growth,” or personal growth from trauma. Others suggest that much of our fear of death stems from not wanting to lose the things we’ve built up (i.e., relationships, possessions, or status). By letting go (even a little) of fierce attachments, it can allow for valuable shifts in perspective and benefits to our well-being. 

My friend and colleague, B.J. Miller, M.D., puts this in a different light. “Death is not at odds with living. You can’t get one without the other.” Whether we like it or not, death is always present. Connecting to the fact that life is defined by the fact that it will end one day will allow you to live more fully, experience deeper relationships, and provide new meaning to your days.

Next time you have the opportunity to reflect on your mortality, think about how it might enrich your life today.

Complete Article ↪HERE↩!