Some Blunt Advice About Your Death

Author and end-of-life educator Sallie Tisdale gets real about death and dying.

“We’re beginners at this. Everything you know falls away.”

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Sallie Tisdale has advice for all of us future corpses. And that is to talk bluntly about death—especially our own.

Tisdale has worked in palliative care and is an end-of-life educator and Buddhist practitioner who holds workshops on death preparation. Her recent book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, was named one of the New York Times Top Books of 2018. In it, Tisdale explains the realities that come with dying and the importance of normalizing conversations about death.

Ideas of impermanence and rebirth after death are tenets of Buddhism, yet Tisdale finds they don’t make the prospect of dying easier to grasp. At 62, she still finds it difficult to imagine herself as a future corpse. When death hits close to home, everything feels clumsy and uncertain, she said. “We’re beginners at this. Everything you know falls away.”

Rather than planning too meticulously for  a “good death,” Tisdale suggests adopting a “mastery of death”—just coming to peace with the fact that we all must die eventually—because we can’t know how our death will go.

Still, that doesn’t mean you shouldn’t prepare. I spoke with Tisdale, and here’s what she suggested we can do.

Sydney Worth: How has your experience with end-of-life care affected the kind of advice you give in your workshops?

Sallie Tisdale: A lot of what I do as a nurse is to normalize [death]. One of the things I want people to consider if they’re going to be with someone who’s dying, is what do you bring into that room. Are you bringing ideas of what you think is a good death that might start to impact how you care for a person? A good death—most people think that means peaceful, no pain, and at home with family. That’s not realistic for a lot of people. I want people to get in touch with their own state and realize that we’re all carrying around some kind of idea about death.

Worth: Where do you think our avoidance of death comes from?

Tisdale: We in the modern West are in a unique position. In less than 100 years, [death has] disappeared from the home in the U.S. That change happened because families became more mobile and scattered. It’s the current generations that have not been exposed to it very much.

Worth: So, this lack of exposure is a result of modernization?

Tisdale: We have a fantasy that we’re going to die in our home like we did 150 years ago, but that world doesn’t exist anymore. [Death] may not look like the fantasy we’re still carrying around. A body gradually loses all of its integrity as we die. We need to say you might have diarrhea at 3 in the morning. How is that going to be handled? And how does that fit into your fantasy? I like this idea of a mastery of death meaning that I am at peace in myself. My dignity and self-worth have nothing to do with what happens to my body.

Worth: Can we start mastering death now?

Tisdale: Notice I didn’t say “master” death, because we don’t get to stop it. Mastery of death would mean acceptance. It’s this old Zen saying, “We love the china bowl because it will break.” We love the fragile. And that’s why we love each other—because we only have so much time. We see the fragility of change.

Worth: What are some things people forget to do before they die?

Tisdale: An awful lot of people never tell their friends or family or doctor what kind of death they want to have. There’s nothing more difficult than being handed this awkward object of a loved one’s corpse and being told what to do with it in a moment when you’re in emotional distress. Why would we consign our family to make that decision instead of being willing to talk about it?

Worth: When should we start preparing for death, then?

Tisdale: Today.

Complete Article HERE!

Going gentle

A sociologist explains how to get the most out of the final months of life

We are all going to die — and most of us will be able to see death coming, months or even years before it happens. That foreknowledge means we should embrace the end of life as a distinct life stage, just like childhood, adolescence and maturity, says Deborah Carr, a sociologist at Boston University. In the 2019 Annual Review of Sociology, Carr and her co-author, Elizabeth Luth of Weill Cornell Medicine in New York, explore how to make the most of this final stage in our lives.

Carr spoke with Knowable about how to find a good death. This conversation has been edited for length and clarity.

You claim that the end of life is a life stage that’s unique to the modern world. Why do you say that?

In past centuries, people tended to die younger, but more important, they tended to die quickly after they became ill. The end of life was basically a week, if that. People died at home. Today, with people dying of conditions like dementia and cancer, someone can experience a month or 10 years between diagnosis and actual death. And today, ventilators and feeding tubes allow people to prolong the length of their life, even if not the quality of life. So it’s a longer and more uncertain stage than in the past.

Is it fair to say that the objective of the end of life is to find a good death?

I think that is one of the main objectives. And that’s a new construct. In the days when people died suddenly, death was really a discrete event. You didn’t have to find ways to soothe them or provide music or other amenities. Today, because people tend to die over prolonged time periods, there’s a real emphasis on ensuring that the quality of that experience, whether it’s a week, a month or six months, is as positive as possible.

What are the components of a good death?

A good death typically has several pillars. First and foremost is freedom from pain. A sizeable portion of dying patients have physical pain and difficulty breathing. So the use of painkillers, palliative care, devices that allow someone to breathe comfortably, is very important.

Another is self-determination. Dying patients and their families want to have some control over the process. They want to choose where they die: at home or in a hospital. They want to choose what kind of treatment they get, whether they get life support.

And the third pillar is a broad category called death with dignity. People want to be treated as a whole person. They want their spiritual and psychological needs met. People even think about planning a funeral that has their favorite music and foods. They want to die being the human being they were in their younger years.

An increasing number of people in the US are dying in their homes or in hospices, as shown by these CDC data from 2003 and 2017. “Hospital” includes inpatient, outpatient, ER and dead on arrival. Hospice deaths in 2003 were just 0.2% of US deaths, compared with 7.8% in 2017.

Are there socioeconomic factors that affect access to a good death?

A good death, like a good life, is often a matter of socioeconomic privilege. There are stark race differences in satisfaction with pain treatment at the end of life. There are a lot of explanations for that, but one is discriminatory practices in prescribing painkillers.

Economic factors probably matter most for advance care planning. Low-income people don’t tend to have living wills. One of the main reasons is they can’t afford a lawyer, or they don’t go to a lawyer for a property will because they don’t own a home. Usually it’s when you go to make a will that the lawyer asks if you would like a living will as well.

Socially isolated people are especially vulnerable to a bad death. Family and loved ones are critical in advocating for quality care, for ensuring that one has a clergy person by their side, getting help, making decisions in a sensible way. That’s a lot more difficult for those who don’t have a spouse or child or close friend nearby. So social isolation is a risk factor for a low-quality death.

This is a life stage that most of us will pass into, and we can only do it once. What can we do to make it as good as possible?

Data show that as people get closer to death, they often change their minds about things. Their values change, they start to value things like comfort, spiritual comfort, relationships with family, and they stop fighting. There’s less of a desire to live longer, and more to live better. People need to think about priorities, think about what’s important to them and their families, and adhere to their values, whether personal or religious. That really guides a lot of decision-making. Open and honest communication, along with formal preparations like advance care planning, are healthy approaches that bring both patients and their families peace.

Families and patients can prepare for the end of life by doing things like writing a living will, and specifying what kind of treatment plan one wants, even specifying how much money to leave behind for one’s children and one’s spouse. All of that planning is guided by some sense of when one’s end is coming. That’s why it’s really important that doctors try to give some estimate of how long someone’s future lifespan is. But that’s very hard to do, both psychologically and technically.

The other thing is to communicate with the people close to you. People need support, both practically and emotionally. They need people to talk to, and literally to hold their hand, but they also need people to help them with decision-making, financial decisions, figuring out whether they’re going to spend their last week at home or in a hospital. That communication can be very helpful.

What is society doing right today?

We have rising numbers of people using hospice, which emphasizes soothing of pain and palliation, rather than treatment. I think that’s a real advance. Patients and family members who receive hospice care are almost uniformly positive about the social support they receive.

The proportion of Americans who have living wills, or who appoint a family member to be decision-maker, has skyrocketed. And under the Affordable Care Act, doctors are reimbursed for the time they spend discussing end-of-life issues with their Medicare patients. That’s really important, because doctors are so rushed today. Being reimbursed to take the time to ask older patients what they want has been another real advance. Some private insurance plans cover end-of-life discussions and others don’t. But nearly all older adults in the United States have Medicare, so in practice, nearly all older adults have this benefit. People under age 65 with a permanent disability also may qualify for Medicare, and consequently are eligible for this benefit.

For-profit hospices are on the rise in the US and nonprofit hospice numbers are falling, raising concerns about the quality of care provided and making it more difficult for some people to spend their final days at home. Data are for hospices that provide care to Medicare beneficiaries.

What are we doing wrong?

Despite all the positive trends, there are still millions of Americans who do not take steps to prepare adequately. It goes back to fear and discomfort about death. People are afraid to talk about these issues — they may think “Oh, it looks like I’m after my mom’s inheritance if I talk about it.” But these are conversations that everybody needs to have. Just like parents should have the drug conversation, people should have the death conversation, to talk about their hopes for what they will experience at the end of life. You aren’t going to achieve what you want unless you articulate it to people who can help you sort it out.

If we can normalize and destigmatize death, and recognize it as a normal part of life and aging, that will empower people to discuss these difficult issues.

The other problem is that for all the strengths of hospice, the number of nonprofit hospices has been diminishing dramatically, and the number that are for-profit has been increasing dramatically. The people who work for hospices are for the most part kind and loving workers, but the for-profits are motivated to make money, so they’re often treating only the patients who are less expensive to treat. They’re often not delivering care to rural residents who need a lot of travel time. They’re shifting hospice care to nursing homes, because that’s cheaper. But that means fewer people are given the opportunity to die at home if they wish. The move to for-profit hospice is undermining the quality of care, and it’s limiting who gets that care.

So far, we’ve been talking about the needs of people at the end of life. But does the final stage of life offer opportunities as well?

One is the opportunity to construct a “post-self,” the self people want to live on after they die. You often hear that people want to leave the world a better place. End of life is a time when they can really think about what kind of legacy they want to leave behind, whether it’s financial or emotional or social.

It’s also one of those rare opportunities to be wholly introspective. There’s long been a theory that as we get older we care less about possessions and the larger social network, and want to spend our final days dedicating our energy to those people who are nearest and dearest to us. This is an opportunity to show gratitude towards loved ones, to focus on spiritual needs, review one’s life and give love and support to those you’re going to leave behind. It’s sometimes important for dying people to tell family members, “I’m ready to go now, and you can be OK with it.” Having those difficult conversations can make people feel more prepared for the transition.

What are the areas we need to work on in the future?

A big one is physician-assisted suicide and euthanasia. That’s not something that’s taken hold in the US. There’s certainly attitudinal support for it — all the survey data show that people think if someone’s terminally ill, with no chance of recovery, and of sound mind, they should be given the option for euthanasia. I think that’s going to be one of our big questions over the next 10 years about end-of-life care.

Complete Article HERE!

Exploring the End with a Death Doula

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Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.

Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.

What’s a ‘good death’?

It’s not quite the peaceful drifting off I’d imagined for my dad.

By Harriet Brown

At age 86, my father had survived both colon cancer and a stroke that left him with aphasia. His mind was sharp, though, and he wasn’t depressed. A crack bridge player with a passion for Italian restaurants, he was popular at his assisted living facility even though he couldn’t speak much. He told me he’d lived a good life and wasn’t afraid of dying, and he didn’t want to go through any more medical trauma. No chemo, no radiation, no surgeries, no treatment.

His advance directive read DNR and DNI — do not resuscitate, do not intubate. No one would break his ribs doing CPR or make bruises bloom along his arms trying to find a vein. As his health-care proxy, I was completely on board. I’d read Sherwin Nuland’s “How We Die,” Atul Gawande’s “Being Mortal,” Elisabeth Kubler-Ross’s “On Death and Dying.” Comfort would be the priority and any pain would be “managed,” which I assumed meant erased.

Up to 80 percent of Americans die in hospitals or nursing homes, and a third spend at least 10 days in an intensive care unit before they die, many of them comatose or on a ventilator. A week after his sudden diagnosis of widespread metastatic disease, my father was lucky enough to get a bed in our town’s only hospice, a homey facility staffed with attentive and experienced caregivers. The alternative would have been a hospital bed in my living room, so it was a relief to know that my father was in the hands of professionals. They would know what to do.

And they did. The nurses and caregivers were gentle as they repositioned my father in bed, explaining each move even when it seemed he couldn’t hear or follow. When he could no longer swallow they squirted morphine into his cheek and rubbed it so the medicine would be absorbed. “This will make you feel better,” they would say, and my father would turn his head and open his chapped lips like a baby bird.

But his death was not the peaceful drifting away I’d always imagined, where you floated into a calm, morphine-induced sleep, your breath came slower and slower and then simply stopped. He vomited blood over and over. A lifelong stoic who never complained of pain — even when he’d broken a hip the year before — he twitched restlessly in bed, eyes closed, his brow furrowed and his skin clammy.

The magical “managing” of pain and nausea I’d anticipated turned out to be more aspirational than real. The hospice nurse prescribed one anti-nausea medication, then another, without success. Eventually, Ativan and Haldol settled the nausea, and morphine helped the pain. My father was lucky it helped; about 25 percent of people die in pain. One caregiver confided to me, “There are people whose pain we never get under control.”

For days we watched my father’s cheeks hollow, watched him pluck at the thin blanket that was all he could bear on his body. His kind brown eyes glazed over, and some trick of the light made them look blue under his half-closed lids. Sometimes he sat up suddenly, reaching forward, and then fell back on the pillows. I knew there was a name for this behavior, terminal restlessness, that it’s common during the dying process. I knew the gurgling sounds he made as he breathed came from his body’s inability to clear secretions, and that — according to hospice — it probably wasn’t uncomfortable for him.

Leaving the hospice facility one night, I told my 81-year-old aunt that I wished I had the nerve to put a pillow over his face. “I’ll stand guard at the door while you do,” she replied. Dying is hard work. And it’s hard to watch.

On the last night, I sat with my father until the summer sky began to darken. Then I gathered my belongings and leaned over the bed where he lay unresponsive, his eyes closed, his mouth half-open. I kissed his stubbled cheek. “Dad, I’m going now,” I told him. “It’s time for you to go too.” He died a few hours later. He was alone, as most people are when they die, so I don’t know if it was peaceful, if he made a sound or opened his eyes or just stopped breathing.

After he died, I was haunted by scenes of his suffering. I remembered looking out a hospital window nearly 30 years earlier with my newborn daughter in my arms, realizing that every one of the people I saw on the street had been born. For every person walking down Seventh Avenue, a woman had borne pain that tore her body open. It was a horrifying thought.

Drugs help with the pain of childbirth, but they can’t take it away completely. It’s the same with dying.

“Suffering is an ineradicable part of life, [like] fate and death,” wrote psychologist Viktor E. Frankl in his bestseller “Man’s Search for Meaning.” He was something of an expert, having survived nearly three years in a variety of Nazi camps.

Of course, my father’s suffering was nothing like the kind Frankl witnessed. But still, death, like birth, is a creaturely process, a force that wrenches us onward without consulting our preferences or respecting our sensibilities.

In the weeks after my father’s death, I began to understand in a deeper way the meaning of a good death. No drugs took away all my father’s physical pain and nausea. But in the care he was given, the morphine, the quiet words, the repositioning and cool cloths on his forehead, his suffering was addressed even if it couldn’t be “managed.”

And that, I think, is what we all want. Not just freedom from beeping machines and needles and the cold lighting of an ICU, though that matters, too. Not just the absence of pain, which isn’t possible for everyone. But the solace of being seen and heard and acknowledged brings comfort even in the face of deep suffering.

I hope it’s something we can remember as we move toward a society where more of us can have a truly good death.

Complete Article HERE!

‘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!

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

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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!

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.”

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