Category: Assisted Dying

Posted on

‘No one is ever really ready’

Seattle aid-in-dying patient chooses his last day

Aaron McQ, 50, sits in his Seattle apartment on Jan. 31. The interior and urban designer had been battling leukemia and a rare form of amyotrophic lateral sclerosis, or ALS, for five years.

A former world traveler, triathlete and cyclist McQ had been in pain and physical decline for years. Last fall, he decided to use Washington state’s 2009 Death With Dignity law to end his suffering.

By

In the end, it wasn’t easy for Aaron McQ to decide when to die.

The 50-year-old Seattle man — a former world traveler, triathlete and cyclist — learned he had leukemia five years ago, followed by an even grimmer diagnosis in 2016: a rare form of amyotrophic lateral sclerosis, or ALS.

An interior and urban designer who legally changed his given name, McQ had been in pain and physical decline for years. Then the disease threatened to shut down his ability to swallow and breathe.

“It’s like waking up every morning in quicksand,” McQ said. “It’s terrifying.”

Last fall, McQ decided to use Washington state’s 2009 Death With Dignity law to end his suffering. The practice, approved in seven states and the District of Columbia, allows people with a projected six months or less to live to obtain lethal drugs to end their lives.

Although the option was legal, actually carrying it out was difficult for McQ, who agreed to discuss his deliberations with Kaiser Health News. He said he hoped to shed light on an often secretive and misunderstood practice.

“How does anyone get their head around dying?” he said, sitting in a wheelchair in his apartment in late January.

More than 3,000 people in the U.S. have chosen such deaths since Oregon’s law was enacted in 1997, according to state reports. Even as similar statutes have expanded to more venues — including, this year, Hawaii — it has remained controversial.

California’s End of Life Option Act, which took effect in 2016, was suspended for three weeks this spring after a court challenge, leaving hundreds of dying patients briefly in limbo.

Supporters say the practice gives patients control over their own fate in the face of a terminal illness. Detractors — including religious groups, disability-rights advocates and some doctors — argue such laws could put pressure on vulnerable people and that proper palliative care can ease end-of-life suffering.

Thin and wan, with silver hair and piercing blue eyes, McQ still could have passed for the model he once was. But his legs shook involuntarily beneath his dark jeans and his voice was hoarse with pain during a three-hour effort to tell his story.

“How do you decide?”

Last November, doctors told McQ he had six months or less to live. The choice, he said, became not death over a healthy life, but a “certain outcome” now over a prolonged, painful — and “unknowable” — end.

“I’m not wanting to die,” he said. “I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”

In late December, a friend picked up a prescription for 100 tablets of the powerful sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.

“I was not relaxed or confident until I had it in my cupboard,” McQ said.

Aaron McQ stored his aid-in-dying prescription in a brown paper bag in the cabinet above the refrigerator. He filled the prescription in late December, planning to use them within weeks. The hard part was deciding exactly when to die.

At the time, he intended to take the drug in late February. Or maybe mid-March. He had wanted to get past Christmas, so he didn’t ruin anyone’s holiday. Then his sister and her family came for a visit. Then there was a friend’s birthday and another friend’s wedding.

“No one is ever really ready to die,” McQ said. “There will always be a reason not to.”

Many people who opt for medical aid-in-dying are so sick that they take the drugs as soon as they can, impatiently enduring state-mandated waiting periods to obtain the prescriptions.

Data from Oregon show that the median time from first request to death is 48 days, or about seven weeks. But it has ranged from two weeks to more than 2.7 years, records show.

Neurodegenerative diseases like ALS are particularly difficult, said Dr. Lonny Shavelson, a Berkeley, Calif., physician who has supervised nearly 90 aid-in-dying deaths in that state and advised more than 600 patients since 2016.

“It’s a very complicated decision week to week,” he said. “How do you decide? When do you decide? We don’t let them make that decision alone.”

Philosophically, McQ had been a supporter of aid-in-dying for years. He was the final caregiver for his grandmother, Milly, who he said begged for death to end pain at the end of her life.

By late spring, McQ’s own struggle was worse, said Karen Robinson, McQ’s health- care proxy and friend of two decades. He was admitted to home hospice care, but continued to decline. When a nurse recommended that McQ transfer to a hospice facility to control his growing pain, he decided he’d rather die at home.

“There was part of him that was hoping there were some other alternative,” Robinson said.

McQ considered several dates — and then changed his mind, partly because of the pressure that such a choice imposed.

“I don’t want to talk about it because I don’t want to feel like, now you gotta,” he said.

Coconut water, vodka, friends

Along with the pain, the risk of losing the physical ability to administer the medication himself, a legal requirement, was growing.

“I talked with him about losing his window of opportunity,” said Gretchen DeRoche, a volunteer with the group End of Life Washington, who said she has supervised hundreds of aid-in-dying deaths.

Finally, McQ chose the day: April 10. Robinson came over early in the afternoon, as she had often done, to drink coffee and talk — but not about his impending death.

“There was a part of him that didn’t want it to be like this is the day,” she said.

Aaron McQ and his friend Karen Robinson go boating on Seattle’s Portage Bay in 2013, before he fell ill with leukemia and a rare form of ALS, or amyotrophic lateral sclerosis.

DeRoche arrived exactly at 5:30 p.m., per McQ’s instructions. At 6 p.m., McQ took anti-nausea medication. Because the lethal drugs are so bitter, there is some chance patients won’t keep them down.

Four close friends gathered, along with Robinson. They sorted through McQ’s CDs, trying to find appropriate music.

“He put on Marianne Faithfull. She’s amazing, but, it was too much,” Robinson said. “Then he put on James Taylor for, like, 15 seconds. It was ‘You’ve Got a Friend.’ I vetoed that. I said, ‘Aaron, you cannot do that if you want us to hold it together.’”

DeRoche went into a bedroom to open the 100 capsules of 100-milligram secobarbital, one at a time, a tedious process. Then she mixed the drug with coconut water and some vodka.

Just then, McQ started to cry, DeRoche said. “I think he was just kind of mourning the loss of the life he had expected to live.”

After that, he said he was ready. McQ asked everyone but DeRoche to leave the room. She told him he could still change his mind.

“I said, as I do to everyone: ‘If you take this medication, you’re going to go to sleep and you are not going to wake up,’” she recalled.
McQ drank half the drug mixture, paused and drank water. Then he swallowed the rest.

His friends returned, but remained silent.

“They just all gathered around him, each one touching him,” DeRoche said.

Very quickly, just before 7:30 p.m., it was over.

“It was just like one fluid motion,” DeRoche said. “He drank the medication, he went to sleep and he died in six minutes. I think we were all a little surprised he was gone that fast.”

The friends stayed until a funeral-home worker arrived.

“Once we got him into the vehicle, she asked, ‘What kind of music does he like?’” Robinson recalled. “It was just such a sweet, human thing for her to say. He was driving away, listening to jazz.”

McQ’s friends gathered June 30 in Seattle for a “happy memories celebration” of his life, Robinson said. She and a few others kayaked out into Lake Washington and left McQ’s ashes in the water, along with rose petals.

In the months since her friend’s death, Robinson has reflected on McQ’s decision to die. It was probably what he expected, she said, but not anything that he desired.

“It’s really tough to be alive and then not be alive because of your choice,” she said.

“If he had his wish, he would have died in his sleep.”

Complete Article ↪HERE↩!

Posted on

Why Do We Give Our Pets Death With Dignity but Not Ourselves?

My years as an emergency veterinarian have shown me the relief that assisted death can bring. Why are our pets the main recipients?

By Catherine Ashe

The room is dim and hushed. On the floor before me lies a shaggy bear of a dog. His name is Shep, and he’s some combination of Great Pyrenees and probably German shepherd. His owners, Anne and Rich, adopted him to guard their dairy goats from coyotes, but Shep wasn’t very good at his job and instead became a much loved house dog. I know this because I’ve been taking care of him, as his veterinarian, for his entire life. Now, as he is stretched out before me on the floor, I can see the effects of the cancer that is slowly ending his life.

Shep has osteosarcoma, an aggressive and destructive bone cancer. It starts somewhere in a long bone of the body, silently eating away at the leg until there is nothing left. The leg gives out in a painful and sudden fracture. The cancer then progresses slowly, eventually invading the lungs. Once the cancer is in the lungs, there is nothing left to be done. It is only a matter of days to weeks.

We discovered the cancer when Shep broke his leg. I had a long heart-to-heart with Anne and Rich. The typical treatment is amputation followed by chemotherapy. With that treatment, a good quality of life can be obtained for up to a year or more. There are no guarantees, of course—cancer will do what it wants. Anne and Rich spent two days deliberating the pros and cons, but since Shep was otherwise happy and healthy, they decided to amputate and pursue chemotherapy. He did great as a tripod. Often you had to look twice to notice that he was missing a leg.

That was nine months ago. Now, the chemo has stopped working, and Shep’s lungs are filled with cancer. As he lays on the floor before me, his breathing is labored. Thin, watery blood leaks from his nostrils, and he coughs occasionally. His eyes are dull, no longer the bright, shiny brown that I remember. He doesn’t enthusiastically investigate my hand for treats. His tail doesn’t thump when I softly murmur, “Shep’s a good boy.” The dog I knew isn’t here any longer. His body is a shell.

Anne and Rich are huddled on either side of him, weeping quietly. Anne runs his shaggy fur through her fingers over and over.

“It won’t hurt, right, Dr. Ashe?” she asks me again.

I shake my head gently. “No. I’m going to give him propofol to make him very sleepy, and then I am going to give him the blue injection. It will slowly stop his heart and breathing. He will drift off to sleep and then he will die. He will not feel anything,” I say. I show her the syringes again, even though we’ve already been over this. I use the word die because ambiguity is never good in these situations.

Anne takes a deep breath, looks at Rich, and then nods. It is time.

I place the Shep’s great paw in my lap, check the catheter, and slowly inject propofol. Shep’s breathing deepens, his eyes grow glassy, and his head falls to one side. I give the second injection. His breathing slows. Slows. Slows. And then it stops. Anne gives a strangled cry and lays across his still form. Rich is stoic but tears track slowly down his face. Both are focused on Shep’s body, so they miss what I see—the final gift my patients often give me. As the drugs take hold, I swear I glimpse relief in his brown eyes.

When I was a kid, I remember hearing my parents having whispered conversations about what I interpreted as “youth in Asia.” I’d be half dozing in the backseat of our car, driving through the night, the radio playing, and I would hear their low voices, the urgency with which they discussed it. At the time, I was uncertain why they were so concerned about the teen population of Japan. What did that have to do with death squads and socialized medicine? It wasn’t until years later that I realized what they were actually discussing—not “youth in Asia” but euthanasia. And it wasn’t until I became a veterinarian that I intimately understood euthanasia, the easy death.

Euthanasia was a hotly debated topic for those of us who grew up in the era of Dr. Jack Kevorkian. When I was 19, Kevorkian was convicted on charges of second-degree murder for assisting in the euthanasia of Thomas Youk. Youk was in the end stages of ALS, a disease that ravages the body but leaves the mind intact.

I paid little attention to these debates back then. I was bound for college, with the world unfurling before me. But these questions came back to haunt me almost 10 years later when I started my career as an emergency veterinarian. For what do veterinarians do besides vaccinate pets and treat diseases? We ease suffering. We help our animal companions to the threshold of death, and then we help them through that final, mysterious door. We euthanize sometimes on a daily basis. We do it for reasons of behavior, illness, injury.

And as we do it, we hold the hands of distraught owners and help them make that last painful decision. We offer words of comfort and listen to sacred stories. And we meet each pet’s eyes in those last moments, and what we see again and again is not fear but relief. Relaxation. The end of suffering has come at last. I have seen it firsthand, time and time again. The wordless thank you, as a beloved pet slips into whatever awaits us in the next life. The light dims and then is extinguished. As animal physicians, we are not afraid to acknowledge that death comes for us all and that we possess the ability to ease its final agonies.

Complete Article ↪HERE↩!

Posted on

Professional death coaches: A new type of doula

Two B.C. women Explore the sacred journey between life and death

Alison Moore and Sue Berlie

By

Death is no stranger to two Okanagan women, who have guided their loved ones through the unique journey.

What’s new, however, is their growing role in helping the wider community embrace a different kind of death experience.

“There’s a lot of paradigm shift(ing) happening right now, people want to talk about it,” said Sue Berlie, shamanic coach, death walker and psychopomp.

Berlie, alongside Alison Moore, a life-cycle celebrant and sacred passages doula are also both trained as home funeral guides through the Canadian Integrative Network for Death Education and Alternation (CINDEA). They are also facilitators of the Okanagan Death Cafe.

Celebrant Alison Moore

Death Cafes were created in 2004 and has spread around the world. The events offer unique opportunities for conversations about death, the dying process and preparation to be had. Through guided in-depth conversations with each other, participants find solace and a new understanding of a usually taboo subject. Currently, 6,588 Death Cafes have been hosted in 56 countries.

Berlie and Moore were drawn the worldwide Death Cafes because of their grassroots nature, and the high demand for people wanting to get more involved with the death and caring of their friends and family. They were also getting sick of the current “business” of dying.

“A lot of people want to die at home and aren’t given that opportunity, and when they do (die at home) we don’t let them lie there and have their friends and family come in where we can hold services … rather, the person dies and has been whisked off to a funeral home and everyone has been left there with a void,” Moore said.

Funerals cost somewhere between $1,000 to $12,000 according to Canadian Death Services Online , and B.C. currently has the highest rates for cremation in Canada.

Seventy per cent of North Americans prefer to die at home, and only seven per cent said they wanted to die in a hospice or palliative care home, in a survey conducted by Donna Wilson, at the University of Alberta. Wilson also teaches nursing and researches dying in Canada and the survey also found that 60 per cent of Canadians actually die in hospital and 10 per cent die in nursing homes.

Outside of religion, rituals to be held after death are lacking and that’s become a problem.

“People are having a deeper experience when helping and preparing for death, part of what we are excited about is helping people grieve well. You should die well and grieve well,” Moore said.

Moore’s education in the world of death and dying began when she found out she was expecting her first child and her best friend was diagnosed with stage four breast cancer.

 

“Here I was gestating life and my best friend was given three to six months to live. She ended up living on Elisabeth Kübler-Ross’ farm (a pioneer in near-death studies and author of On Death and Dying) and becoming one of the subjects in her book. She brought us on this journey of spiritual exploration with her,” Moore said.

Talking about death and dying hasn’t been difficult since that perspective-shifting experience. Now as a celebrant, Moore “marries and buries” people, guiding them through different life-changing experiences; the birth of a child, officiating marriages and officiating funerals.

Moore is now a certified death doula whose first guided her father through death.

“It was very interesting being on the inside, as a daughter, and being the person that was trying to hold space for the person I was caring for — it was an extraordinary experience. We are trained to focus on the person we are caring for, providing them with a beautiful quality of life and death. We are of service to the path that the person is taking, and it is a sacred one.”

Berlie, a psychopomp (a guide of souls to the place of the dead) takes a different spiritual journey in her work. There is no general scenario, as she works on a case by case basis. She can be there during a death, after, or if asked by a family member or the person who is dead to ensure their spirit is not trapped. Berlie also facilitates conversations, ceremonies and rituals. Berlie calls it dreaming themselves into their next life.

“It will always depend on what people believe, you have to stay within their beliefs, you cannot introduce anything. It is about them and what they want,” Berlie said. “Dreaming into what is next, is more of a conversation and I see that with the more Death Cafe’s we hold, the more people become open to other things and they start to explore within themselves wondering “well maybe my body doesn’t just shut down and that’s it for my spirit.””

Sue Berlie

Berlie works alongside spirit guides, spirit animals and the realms to help spirits continue onto the journey of what is next.

Her work began when she was 18 years-old and her best friend died suddenly in a car accident.

“He stood there clear as day and talked to me the night he died— I later went to a psychic 30 years later and she said “Oh who is that over your left shoulder? You have a bright gold orb hovering there, he hasn’t left your side.” It was my friend and he didn’t realize he was dead. He is my spirit guide and I believe he helps me in my work.”

Berlie later volunteered at a hospice and found she was not able to help people in their last stage of life in the way she felt compelled to. She changed her career in order to strengthen her ability as a psychopomp by becoming a shamanic practitioner, and certified death walker. Shamanic practitioners are healers who move into an altered state of consciousness to access a hidden reality in the spirit realms with the purpose of bringing back healing, power and information.

As a death walker Berlie accompanies people as the go onto their journey towards death, nurturing, enhancing and strengthening the capacity of the person about to die. While providing legal and practical knowledge to them and the family.

The next Okanagan Death Cafe series has yet to be scheduled but the women have decided to host them bi-monthly instead of annually to accommodate and continue the conversations around death and dying.

“What I would like to see and what is beginning in these dialogues on death and dying is, that people are opening up to the fact that the one thing we know when we are born is that we are going to die. We need to start embracing in our daily lives, because each day is a gift,” Alison Moore said.

For more information, or to find a Death Cafe near you please visit www.deathcafe.com

Complete Article ↪HERE↩!

Posted on

Does palliative sedation ease suffering during end-of-life care?

By Michael Ollove

oward the end, the pain had practically driven Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and good-humored turned into someone hardly recognizable to her loving family: paranoid, snarling, violent.

Sometimes, she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having her sister drive her into the mountains and leave her with the liquid morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the Long Beach acute care center where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

“At least she got into that coma state versus four to eight weeks of torture,” Freeman said.

While aid-in-dying, or “death with dignity,” is now legal in seven states and Washington, D.C., medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Since there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point palliative sedation is appropriate — if ever. Policies vary from one hospital to another, one hospice to another, and one palliative care practice to another.

Not Euthanasia

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at the advocacy group Compassion and Choices. In both cases, the goal is to relieve suffering.

But many doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia, including aid-in-dying, is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Other groups such as the National Hospice and Palliative Care Organization, which advocates for quality end-of-life care, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation is also administered when the underlying disease has made death imminent.

“Some patients are super sick,” Quill said. “The wheels are coming off, they’re delirious, out of their minds.”

In that circumstance, palliative sedation doesn’t accelerate death, he said. “For other patients who are not actively dying, it might hasten death to some extent, bringing it on in hours rather than days.” He emphasized, however, that in all cases the goal isn’t death but relief from suffering.

One review of studies on palliative sedation concluded that it “does not seem to have any detrimental effect on survival of patients with terminal cancer.” But even that 30-year survey acknowledged that, without randomized control trials, it’s impossible to be definitive.

‘Existential Suffering’

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Doctors are divided about whether palliative sedation is appropriate for alleviating suffering that is not physiological, what medical journals refer to as “existential suffering.” The hospice and palliative care group defines it as “suffering that arises from a loss or interruption of meaning, purpose, or hope in life.”

Some argue that such suffering is every bit as agonizing as physical suffering. Existential suffering is the motivation that prompts many to seek aid-in-dying.

Terminally ill patients who took their own lives under Oregon’s aid-in-dying law were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones.

Using palliative sedation to relieve existential suffering is less common in the United States than it is in other Western countries, according to UCLA’s Strouse and other American practitioners. “I am not comfortable with supplying palliative sedation for existential suffering,” Strouse said. “I’ve never done that and probably wouldn’t.”

In states where aid-in-dying is legal, terminally ill patients rarely choose between aid-in-dying and palliative sedation, said Anthony Back, co-director of the University of Washington’s Cambia Palliative Care Center of Excellence. In Washington, patients with a prognosis of six months to live or less must make two verbal requests to their doctor at least 15 days apart and sign a written form. They also must be healthy enough to take the legal drugs themselves.

“If you are starting the death-with-dignity process, you’re not at a point where a doctor would recommend palliative sedation,” Back said. “And with terminal sedation, the patient doesn’t have that kind of time and is too sick to take all those meds orally,” he said of the aid-in-dying drugs.

But Back does tell terminally ill patients who don’t want or don’t qualify for aid-in-dying that, when the time is right and no other treatments alleviate their symptoms, “I would be willing to make sure that you get enough sedation so you won’t be awake and miserable.”

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, a well-known San Francisco public relations executive, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, her husband said.

She desperately wanted to die, he said, but aid-in-dying, which she advocated for, wasn’t yet legal. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors upped her dosage, putting her into a deep unconsciousness. Still, she didn’t die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy for her.

“Palliative sedation is slow-motion aid-in-dying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Complete Article ↪HERE↩!

Posted on

Palliative Sedation, an End-of-Life Practice That Is Legal Everywhere

Jennifer Glass, a well-known San Francisco public relations executive, asked her husband, Harlan Seymour, to photograph her every day after her lung cancer diagnosis. Glass, an aid-in-dying advocate, died under palliative sedation in 2015, a year before a new California law allowing medically assisted suicide took effect.

By: Michael Ollove

Toward the end, the pain had practically driven Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and good-humored turned into someone hardly recognizable to her loving family: paranoid, snarling, violent.

Sometimes, she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having her sister drive her into the mountains and leave her with the liquid morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the Long Beach acute care center where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

“At least she got into that coma state versus four to eight weeks of torture,” Freeman said.

While aid-in-dying, or “death with dignity,” is now legal in seven states and Washington, D.C., medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Since there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point palliative sedation is appropriate — if ever. Policies vary from one hospital to another, one hospice to another, and one palliative care practice to another.

Not Euthanasia

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at the advocacy group Compassion and Choices. In both cases, the goal is to relieve suffering.

But many doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia, including aid-in-dying, is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Other groups such as the National Hospice and Palliative Care Organization, which advocates for quality end-of-life care, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation is also administered when the underlying disease has made death imminent.

“Some patients are super sick,” Quill said. “The wheels are coming off, they’re delirious, out of their minds.”

In that circumstance, palliative sedation doesn’t accelerate death, he said. “For other patients who are not actively dying, it might hasten death to some extent, bringing it on in hours rather than days.” He emphasized, however, that in all cases the goal isn’t death but relief from suffering.

One review of studies on palliative sedation concluded that it “does not seem to have any detrimental effect on survival of patients with terminal cancer.” But even that 30-year survey acknowledged that, without randomized control trials, it’s impossible to be definitive.

‘Existential Suffering’

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Doctors are divided about whether palliative sedation is appropriate for alleviating suffering that is not physiological, what medical journals refer to as “existential suffering.” The hospice and palliative care group defines it as “suffering that arises from a loss or interruption of meaning, purpose, or hope in life.”

Some argue that such suffering is every bit as agonizing as physical suffering. Existential suffering is the motivation that prompts many to seek aid-in-dying.

Terminally ill patients who took their own lives under Oregon’s aid-in-dying law were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones.

Using palliative sedation to relieve existential suffering is less common in the United States than it is in other Western countries, according to UCLA’s Strouse and other American practitioners. “I am not comfortable with supplying palliative sedation for existential suffering,” Strouse said. “I’ve never done that and probably wouldn’t.”

Elizabeth Martin, standing between her cousin Tamra Halfacre, left, and sister Anita Freeman. Martin, who had colon cancer, died in 2014 under palliative sedation administered to relieve intractable pain. While aid-in-dying is legal in seven states and Washington, D.C., palliative sedation, in which terminally ill patients are rendered unconscious to relieve intractable suffering, is legal everywhere in the United States.

In states where aid-in-dying is legal, terminally ill patients rarely choose between aid-in-dying and palliative sedation, said Anthony Back, co-director of the University of Washington’s Cambia Palliative Care Center of Excellence. In Washington, patients with a prognosis of six months to live or less must make two verbal requests to their doctor at least 15 days apart and sign a written form. They also must be healthy enough to take the legal drugs themselves.

“If you are starting the death-with-dignity process, you’re not at a point where a doctor would recommend palliative sedation,” Back said. “And with terminal sedation, the patient doesn’t have that kind of time and is too sick to take all those meds orally,” he said of the aid-in-dying drugs.

But Back does tell terminally ill patients who don’t want or don’t qualify for aid-in-dying that, when the time is right and no other treatments alleviate their symptoms, “I would be willing to make sure that you get enough sedation so you won’t be awake and miserable.”

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Jennifer Glass with her husband, Harlan Seymour, after she was diagnosed with cancer.

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, a well-known San Francisco public relations executive, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, her husband said.

She desperately wanted to die, he said, but aid-in-dying, which she advocated for, wasn’t yet legal. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors upped her dosage, putting her into a deep unconsciousness. Still, she didn’t die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy for her.

“Palliative sedation is slow-motion aid-in-dying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Complete Article ↪HERE↩!

Posted on

What Is a ‘Good Death’?

By R. Scott Rappold

When Beth Wood’s cancer returned in 2014 after 20 years of remission, she made an instant choice: no chemotherapy, radiation, or other life-altering treatments that could only stave off the inevitable.She told her husband so much in the same breath as informing him the cancer was back, after what was supposed to be a routine visit to the doctor.

“She made a decision to say, ‘I’m not going back through that again. I want quality of life, not quantity,’ ” says her husband, David Wood, of Tennessee. “And we were given almost 3 more years.”

They traveled the country, spent a final Christmas with the children and grandchildren, and when she died at the age of 65 on Dec. 29, 2016, it was peaceful, at home, with Beth secure in her faith she was going to a better place. It was, says her widower, a “good death.”

“I thought a lot about those two words. I think to understand death, you have to understand the life of the person. For her, she was not scared of death,” he says.

It’s a concept more Americans, from the elderly to the terminally ill to the doctors who care for them, are embracing. Eight states have passed laws allowing doctor-assisted suicide, although a judge recently overturned California’s 3-year-old law. Conversations about death, once taboo, are now held around the world at so-called Death Cafes. Before former first lady Barbara Bush died in April, she received support on social media when she decided to forgo further medical treatments.

After all, at no point in history have people lived as well as Americans today. So, more people are asking: Why shouldn’t we focus on the quality of our death as well?

Aid-in-Dying Laws

By the end, Kathy Myers couldn’t even get out of bed on her own. A lifelong smoker in Aurora, CO, she had chronic obstructive pulmonary disease.

There were no more bike rides with her husband, no more trips to the mountains, no more working in her garden, no more doing anything without an oxygen tank. So when Colorado voters approved doctor-assisted suicide in 2016, she was determined to use it. But because of misunderstandings or a reluctance to act under the new law, they had a hard time finding a doctor willing to act on it.

“What I came up against was a lot of ignorance. Our family doctor said it was going to take court orders and years before we could opt for that,” says her husband, Herb Myers.

After the couple pleaded for help through local media, a doctor got in touch and made a house call, agreeing that Kathy met the criteria under the new law: a prognosis of less than 6 months to live and sound mental capacity. A second doctor confirmed, as required by the law, and on March 12, 2017, Herb emptied 100 capsules of Seconal into a glass of Gatorade.

They held hands as she drifted into unconsciousness. A short time later, a hospice nurse confirmed she had no vital signs. It was, Herb said, “very gentle and very quick.” She would’ve been 63 the next day.

In the first year of Colorado’s law, 69 people were prescribed aid-in-dying drugs by 37 different doctors, and 78% of them were able to die at home, according to the Colorado Department of Public Health and Environment.

Nationwide, the movement has come a long way since Jack Kevorkian was sent to prison in 1999 for assisting in patient suicides. Oregon in 1994 became the first state to pass an aid-in-dying law, which has been used more than 1,000 times. In that state, Catholic groups and other conservatives remain opposed, although they are not actively fighting the law.

Sam DeWitt is the Colorado access campaign member for Compassion and Choices, a Denver-based nonprofit that advocates for such legislation around the country. The organization and its staff and volunteers have worked to educate doctors about the new law. They find the most opposition in rural areas and at medical facilities with religious affiliations or out-of-state ownership. Medical facilities can opt out of the law, prohibiting their pharmacies from filling such prescriptions or such deaths occurring on the premises, but they can’t forbid doctors from taking part.

“It really is a two-pronged approach to getting acceptance. We need the patients to know their rights and to be willing to have a hard conversation with their doctor, but we also need to educate the doctors … so the patients feel comfortable discussing it and the doctors feel comfortable prescribing or referring them to someone who will prescribe it,” DeWitt says.

After Kathy Myers’ story made headlines, Herb Myers’ phone rang constantly with people asking for help finding a doctor. Those calls don’t come anymore as the process in Colorado has gained more acceptance. And while he misses his wife of 38 years, he has no regrets.

“Anything else we did would have just prolonged her life and her suffering. I think it was the right thing to do,” he says. “I think everybody should have the right to go the way they want.”

Talking About Death

Sarah Farr is an end-of-life doula in the Washington, D.C., area. While doulas are better known for providing help for births, Farr hosts regular meetings known as “Death Cafes” for people to discuss this once taboo topic. Other end-of-life doulas work one-on-one with people who are dying, helping them memorialize their lives and plan their deaths.

“I think in America, we live in a very youth-centered culture, a very kind of anti-aging culture. There’s a lot of denial of death. We don’t usually see people die in our homes anymore,” Farr says. Becoming and end-of-life doula has become popular, with 18 training sessions being held around the country in 2018 alone, according to the International End of Life Doula Association.

According to Deathcafe.com, on any given day there could be half a dozen such meetings around the country. Farr put out chairs for 15 at the last gathering she hosted; 50 people showed up. Discussions run the gamut of death-related concepts, and attendees range from young people to the elderly. Most have experienced a death, and Farr sees them looking for some control over what is essentially uncontrollable: their own deaths.

“A lot of people want to maybe share stories of a death they witnessed. People say, ‘If I could have a say in it, this is how I’d want to die,’ ” she says.

“Choosing [the] day and time of our deaths; it’s just something we don’t have control over. But that doesn’t mean we can’t plan for it if it was to happen, in terms of using hospice care, dying in a hospital versus dying at home, exploring different things you can do with your body after you die, discussing home funerals.”

Of course, a “good death” could be something different for each person. Emily Meier, PhD, a clinical psychologist at UC San Diego Health, recently studied research from around the world on death and identified 11 core themes for a good death. Among these were a lack of pain, religious and emotional well-being, a feeling of life completion, dignity, closeness of family, and quality of life. Being able to die at home is also a strong desire.

Meier said a “good death” is different for each person, but talking about it in advance is the best way to make it happen. No matter the age, she encourages people to prepare advance directives, wills, and other end-of-life documents and share their wishes with loved ones.

“If the conversations are ongoing, and even when you’re healthy, if you have conversations about, ‘What’s most important to me at this point in my life?’ a lot of those things are going to stay the same at the end of life,” Meier says. “The more we talk about it earlier, the less scary it becomes because it’s very challenging to have those conversations in the last moments and trying to scramble together to make sure people are having, so to speak, a good death.”

The Hospice Alternative

Most people think of hospice as a place people go to die. At Alive Hospice in Nashville, it’s where they go to live as well as possible until they die.

Chief medical officer Robert Berkompas, MD, said the nonprofit hospice has only 55 beds but treats 4,000 patients a year with a prognosis of 6 months or less to live. Most of the care is done at home by a team of nurses, doctors, counselors, and others who work in a variety of health care fields.

“We actually ask them: What are their expectations? What are their desires? It’s fairly common they don’t want to suffer physically, with pain and nausea and swelling, so we address all that,” Berkompas says.

But what if they only want to stay alive long enough for an upcoming wedding? What if their treatment plan has side effects that make their final days unbearable?

“We let the patient direct as much of their perception of what a good death would be and work with that,” he says. “If we can give them a great deal of control within the hospice environment, I hope we’re giving them the best of both worlds.”

As a doctor trained to always fight illness, it required a change of philosophy. Berkompas works with other doctors to help them get away from the treat-at-all-costs approach.

“When we say, ‘I really don’t have any more treatment for that illness that is effective or promising,’ I can say, ‘But I still have a treatment for you.’ It’s going to be helping you through this process of dying, and hopefully it will be a good death and not spending your final days in an ICU or a hospital.”

For David Wood, whose wife declined aggressive treatment for her terminal cancer, Alive Hospice made all the difference in making her final months bearable. Nurses visited the home every other week, giving her medication to deal with the pain. And when she couldn’t get out of bed on her own, a nurse came. If he had questions at 2 a.m., he called and someone from the hospice answered. It gave him the confidence to keep her in the house and be her caregiver until the end.

It was the most intimate time in their 43 years of marriage.

“She wanted me to live again, to love again, to play again,” said David, who has since remarried.

“She was comfortable. She told me, ‘David, I am not scared about where I’m going because I know who I’m going to.’ ”

“Hospice just gave me and her the confidence to have a good death. To me, it’s to make the transition from this world to the next.”

Complete Article ↪HERE↩!

Posted on

Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—Christopher Stookey, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 


 

Note: With the exception of quotes, information in the following sections has been adopted from End of Life Washington.

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—Ann Jackson

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article ↪HERE↩!