‘It was kindness and it was a mercy’:

The doctor helping people to die

Oncologist Cameron McLaren

By Melissa Cunningham

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

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

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

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

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

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

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

Phil Ferrarotto

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The fallout never came.

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

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

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

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

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

Complete Article HERE!

The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Struggling with care — When is ‘end of life’ too much?

By GARRY OVERBEY

A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”

Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.

When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.

“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”

The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.

“If I had the means and the courage, I would have ended his misery,” Green said.

She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.

“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.

Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.

A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.

“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”

Through the looking glass

Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.

They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.

Drew was extremely handy and could do almost anything that needed doing around the house.

“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”

Around his mid-50s, things changed.

“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”

The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.

Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.

Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.

They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.

“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”

For instance, Drew once thought he could go upstairs by walking through a mirror.

His condition steadily worsened over the years.

“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”

Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.

“I was under the delusion that I could take care of him,” she said.

Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.

The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.

“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”

Dowling added she wishes there were “many more resources.”

Green said she needed someone to come three nights a week, and someone on call at night.

She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.

“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”

Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.

“It’s difficult to ask anybody to help restrain someone in the middle of the night.”

Reality check

In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.

She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.

His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”

At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”

One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.

He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.

“Obviously, he was lots and lots of work wherever he went.”

She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”

“I knew he was dying,” she said.

A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”

Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.

“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”

Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.

‘The old person’s friend’

The Lake Placid facility turned out to be worse than she could have imagined.

“The place was dirty, the staff overworked and the administration was less than helpful.”

Drew’s conditioned worsened.

“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”

After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”

“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”

Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”

“It was a wonderful place to be,” she said of hospice.

She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.

A better ending

Three months later, Drew’s last days haunt her.

“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.

“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”

She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”

If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”

Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.

“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.

“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.

“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”

Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.

“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”

She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.

“Don’t think that anyone is going to automatically be there to help you.”

She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.

“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”

Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.

Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.

Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.

She’s adjusting to life without her husband.

“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”

Complete Article HERE!

Why people choose medically assisted death revealed through conversations with nurses

Without an understanding of the complexities of medically assisted dying, it’s difficult for patients and families to make good decisions.

By and

Since Canada legalized Medical Assistance in Dying (MAiD) in 2016, as of Oct. 31, 2018, more than 6,700 Canadians have chosen medications to end their life.

Canadians who meet eligibility requirements can opt to self-administer or have a clinician administer these medications; the vast majority of people choosing MAiD have had their medications delivered by physicians or nurse practitioners. Canada is the first country to permit nurse practitioners to assess for medically assisted dying eligibility and to provide it.

The precise meaning and implications of MAiD — in particular, who can request medical assistance in dying in Canada — is still evolving through court rulings. Québec’s Supreme Court recently struck down the reasonably foreseeable death requirement under the Criminal Code and the end-of-life requirement under Québec’s Act Respecting End-of-Life Care.

Without the requirement of a reasonably foreseeable death, it is likely that other legal challenges will occur to extend assisted dying to other groups such as those whose sole underlying condition is severe mental illness.

Involvement of nurses

Our research has explored how the nursing profession is regulating the new area of responsibility towards medically assisted dying and how nursing ethics might guide policy and practical implications of nurses’ experiences.

Current legislation guards the right of health-care providers to conscientiously object to participation in MAiD. Nurses who do conscientiously object have a professional obligation to inform their employers of that objection, to report requests for MAiD, and to not abandon their clients. They also must ensure that their choices are based on “informed, reflective choice and are not based on prejudice, fear or convenience.”

The nurses who surround the process of medically assisted dying are an important source of insight into the complex and nuanced conversations our society needs to have about what it is like to choose, or be involved with, this new option at the end of life, and to be involved in supporting patients and their families toward death with compassion.

Researchers are following how the nursing profession is regulating nurses’ involvement in medically assisted dying.

Impoverished stereotypes

Our most recent research involved interviews with 59 nurse practitioners or registered nurses across Canada who accompanied patients and families along the journey of medically assisted dying or who had chosen to conscientiously object. Nurses worked across the spectrum of care in acute, residential and home-care settings.

During our research, and as we followed media stories, we became aware that as with other morally contentious issues, involvement in MAiD has often been discussed in one-dimensional ways: We noted stereotypes of health-care providers and patients who heroically conquer suffering, death and the system by taking control of what might otherwise have been a difficult and prolonged dying. We also observed caricatures of oppositional or religious right-wing persons and institutions who stand in the way of compassion and dignity.

Neither of these perspectives do justice to the complexities of MAiD as it is enacted. Without an understanding of those complexities, it is difficult for patients and families to make good decisions.

Nurses accounts of MAiD

Nurses told us that medically assisted dying is about so much more than the act itself. Medically assisted dying is a conversational journey with patients that lasts weeks or even months.

These discussions patients have over time with skilled and compassionate health-care professionals help to determine whether this is what they really want, or whether there are other options that might relieve their suffering.

Conversations between patients and their families are essential to negotiating a common understanding and moving forward together.

Indeed, evidence has suggested that these conversations, when experienced as meaningful by patients, may help to alleviate the suffering that leads to the request for a medically assisted death. This is particularly true if the suffering has arisen from the sense of isolation.

If and when patients decide to proceed with MAiD, then conversations are required to ensure that all of the organizational details (what, where, when, how) are patient-centred choices and that those who are involved know the part they are to play. After the act of medically assisted dying, it is compassionate conversations that support families in navigating an uncharted bereavement process.

So yes, medically assisted dying is about supporting autonomy, but it is also about understanding that autonomy exists within, and is shaped by, our constellation of relationships. We need to be talking more about the essential nature of what it means to have a good death.

Complex reasons to choose death

MAiD is often spoken of as the definitive intervention that ensures control over the alleviation of suffering. But, we have learned that MAiD can also be chosen as the antidote to a system that fails in compassion or equitable palliative care access.

It may seem the perfect solution for rural and remote patients who want a home death but are unable to find sufficient palliative care in their context.

It may seem the best option for patients who do not want to enter what they perceive to be the dehumanizing environments of residential care.

We heard a story of one man who had overstayed the time allowed on a palliative care unit. His doctor was a conscientious objector to medically assisted dying so each time health professionals planned to transfer him to residential care, the man asked for a medically assisted death. In doing so his stay in palliative care was assured.

We need to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

We heard other stories of patients who were not willing to tax their caregivers any longer, particularly if those caregivers sent cues that they were exhausted.

So, while medically assisted dying does promise control over people’s suffering, it can also be used as a form of resistance to a challenging system or depleted support.

We need to plan ways to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

Deeply impactful

Nurses emphasized how important it is to have preparatory conversations repeatedly. Organizing an assisted death is labour-intensive for all involved; it requires thoughtful and detailed planning within the care system and among families and support networks.

Often the first time that patients and families hear a detailed explanation of the process is when the nurse or the physician first assesses eligibility. Nurses said it is not uncommon for patients to experience uncertainty, to vacillate in their decision around an assisted death, or to experience fear at the moment of death.

It is tough to talk about your uncertainty when so many have invested time and energy into planning your death. At the time of assisted death, nurses and physicians go to extraordinary lengths to ensure a “good death” by normalizing the process, fulfilling patient wishes and providing exemplary clinical care.

Despite all of this, the death is often deeply impactful because it is so different than the death we have known where people gradually fade away. Persons receiving medically assisted death are fully there one minute, and gone the next.

Within minutes they go from talking, to unconscious, to a grey pallour that signifies death, and this “greying” affects even seasoned health-care providers. The death can provoke an array of overwhelming emotions in health-care providers and families alike, both positive and negative.

With the changing landscape of medically assisted dying in Canada, the need for reflective conversations becomes ever more urgent. We need to better understand how medically assisted dying changes the nature of death to which we have become accustomed and how those changes impact all those involved.

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!

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!

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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