Category: Assisted Dying

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Terminally ill Vancouver Island woman thanks Canada for a peaceful death

Noreen Campbell underwent a medical assistance in dying procedure on Thursday.

By Amy Smart

Most of us wonder, every once in a while, when we might die.

Noreen Campbell knew it would be Thursday and it was.

On Monday, she walked from her kitchen into her sun room, which looks onto a rural North Saanich property.

“I’ll go in here,” she said, sitting down in an overstuffed, beige leather chair. Her daughters, Mary and Jane, would be at either side, she said, and her husband, Cliff, would be there, too.

Campbell, 71, could still walk, talk and form coherent thoughts. She wasn’t bound to a hospital bed or so far gone that her family had to wonder about her level of consciousness. But as a registered nurse for 53 years, she had watched many people suffer in their final days and said she had reached her threshold.

“Some people might think I’m too capable, but why should you wait until you have to roll me in?” Campbell said.
“I’m ready.”

Campbell was among the first to receive approval for medical assistance in dying. That was in August, two months after landmark legislation was enacted to allow the procedure in Canada.

She chose to share her story in the hope that it might open the door for others facing death and draw attention to gaps she saw in the process. “I have this feeling that if you’re not part of the solution, you’re part of the problem. With my background, the failure to do something would be negligent,” she said.

“I believe this is the message: To reassure patients and their loved ones that there is an alternative — and give them hope and courage.”

Campbell’s health decline began with a bit of discomfort in 2012. She had a toothache that wouldn’t go away.

“One day, I was sitting and thinking and it was like a smack to the side of the head. I was the educator for the surgical unit that does oral cancer and I thought to myself: ‘What would cause the pain to stay in the same place, be consistent and get worse?’ I asked for a biopsy. And I had very extensive oral cancer,” she said.

“I think it was missed because I’m not a smoker.”

She underwent surgery to remove tissue and bone in her face and jaw, alleviating what had become horrific pain.

About a year after the surgery, she was diagnosed with chronic obstructive pulmonary disease, which is a progressive obstruction of airflow into or out of the lungs.

As a nurse, Campbell had watched many people die. Her worst fear was respiratory disease, she said, having seen, more than once, the extreme suffering of a person who is desperate for air. Faced with the same future, she began planning a trip to Switzerland, where assisted dying is legal.

A Supreme Court of Canada ruling in May 2015 meant she wouldn’t have to make the trip.

The assisted-dying movement largely began in Canada in the 1990s, with Sue Rodriguez, also from North Saanich.

Rodriguez suffered from amyotrophic lateral sclerosis (ALS) and wanted the legal right to end her life with the help of a physician. She lost her legal challenge to the Criminal Code’s prohibition on assisted death, but died in 1994 with assistance from an anonymous physician.

More than 20 years later, in 2015, the Supreme Court unanimously voted to strike down the prohibition and allow medically assisted death. It was legalized with passage of the Medical Assistance in Dying Act on June 17, 2016.

Two days later, Campbell submitted her application.

“I was ready,” she said.

Noreen Campbell underwent a medical assistance in dying procedure Thursday, here she spends time with her horse Dasha in Victoria.

Campbell told her doctor she wanted it as a backup. A respiratory infection could put her in the agony of not being able to breathe and she wanted the power to control her end, if that was the case.

“Simply put, I’d rather end it in two minutes than two days.”

Gradually, her disease progressed to the point where symptom management became a 24/7 job, she said. It had been years since her health began to decline and it became clear that she was dying.

“I think it is this perfect storm. It’s not one symptom, it’s things coming together and they just start to pile up. It’s not just my inability to breathe or my jaw pain. It’s everything. And when you know, ‘This will not get any better’ … there’s a point where you make your decision. And my point was when I was overwhelmed and I felt like I could no longer cope.

“I am dying. I am getting weaker. I can do less, symptom control is overwhelming me. I’m going to die; end of story. And I suddenly get this choice: Do I want to die in less than five minutes? Compared with [experiencing what] the people I’ve witnessed who died over hours and days went through — there is no choice. Otherwise it’s called torture,” she said.

Campbell pressed her finger over her breathing tube each time she spoke, allowing air to pass through her voice box.
Facing death made her reflective, she said.

“We all know we’re going to die, but we don’t have it in our heads. I think, culturally, we have a lot of escapism. When you look at the time before antibiotics, in the 1900s, you were grateful to be alive. But in the 2000s, we’re looking for a way to get out of this life. We have not prolonged healthy living; we have prolonged life by preserving chronic illness.”

After so many years serving at bed sides, she said being in a hospital bed and then as an at-home patient gave her a new perspective on care. Not enough attention is given to a patient’s suffering or quality of life and patients still aren’t provided with all the information they need to make informed decisions, she said.

It begins with doctors talking over a patient’s head — though in her case, she understood what they were saying. And it continues with the difficulty of obtaining information about medical assistance in dying.

Campbell said ambiguity in guidelines from the College of Registered Nurses of B.C., accompanied by recommendations to consult your employer and legal representation, for example, would discourage nurses from communicating with patients about the option unless they ask for it specifically. “I see this as an absolute conflict with suicide-prevention guidelines, which say, if someone walks in and says ‘I can’t go on,’ my question [as a nurse] should be, ‘What’s the matter?’ Not, ‘I can’t talk about that,’ ” Campbell said.

Before Bill C-14 passed into law in June, the federal government added conditions that would exclude many individuals from medical assistance in dying, arguing it needed to protect vulnerable people. It limited the right to mentally competent adults who are suffering unbearably, in an advanced and irreversible decline and whose natural deaths were reasonably foreseeable.

The law has been simultaneously celebrated for opening access, challenged on the basis that it would conflict with medical staff’s freedom of religion and criticized for being too narrow.

Justice Minister Jody Wilson-Raybould has said if assisted-dying was available to anyone suffering from a serious medical condition, then it would be an option for survivors of sexual abuse and soldiers with post-traumatic stress disorder. And the Council of Canadians with Disabilities has said the act needs more restrictions to protect people with new disabilities, who might feel hopeless before they adjust to their new reality.

A 25-year-old woman with spinal muscular atrophy has launched a constitutional challenge, with the B.C. Civil Liberties Association, to expand the right beyond those facing “foreseeable” death.

For Campbell, too, the law doesn’t go far enough. The requirement of “foreseeable death,” doesn’t take into account what can be unbearable suffering from chronic illness.

Suffering, she said, is not always a virtue.

“We should be looking more at what quality of life means to people,” she said.

“I think suffering, pain, does help people mature. That’s the difference between being a kid and an adult. Even if it’s your first broken-heart romance and you see the dud later and think, ‘Thank God,’ there’s a certain amount of pain that’s necessary to make us an understanding society and for people to develop empathy and sympathy. But the idea that suffering is always worthwhile, it’s just beyond me.

“From the time when I was approved, from the time I decided, ‘yes,’ I would say I have experienced the most calm. It’s hard to imagine, but it’s given me a chance to do things,” Campbell said, when asked if she was afraid of death.

She completed a manuscript on wound care, her specialty as a nurse. She became an honorary member of an East Coast chapter of the activist group Raging Grannies (she asked that the story end with “Rage on!”). And she published a video explaining her choice with the advocacy group Dying with Dignity.

She said she didn’t believe in bucket lists — they just cause anxiety. But the knowledge that she would get medical help in dying, when it was time, meant she didn’t have to waste time wondering.

“The other thing we don’t have is a roller-coaster. When you have people who are chronically ill, they’re desperately ill, then recover, then desperately ill, then recover. When you have medical assistance in dying, your focus can be on a comfortable death.”

On Thursday, she went into her sun room and sat down with her family. Her physician gave her a sedative, then via IV, something that would stop her heart. But first she sent the following in an email:

“This is my day — I was able to watch my grandson play hockey, we have had a string of celebrations — tears sure — but so much laughter. Thank you Canadians for making a peaceful death possible for me and sparing my family and friends from witnessing a death with fear and suffering.”

She died at 2:38 p.m.

Complete Article HERE!

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When dying is a choice

By

[I]t was cold but the sun was shining when my father looked out the window and said he wanted to die.

He was lying in a hospital bed, tubes tying him to machines and drips. He was 65, wasn’t a smoker but, like a lot of firefighters, had inhaled things that embedded in his lungs, slowly strangling them. His skin was ashen, his eyes wet and hauntingly sad.

When he said he wanted to die, my immediate reaction was to reassure him, to hold his hand, to tell him that my mother, my brother, my sister, and I didn’t want him to go, that we loved him too much to let him go, that he couldn’t go just yet.

That was 29 years ago, and it took me many years to realize that my reaction to my father’s plaintive, death-bed declaration was selfish, that it was rooted in what I thought was best, what I wanted, not what he thought was best, not what he wanted.

My father lingered for several weeks after he told me he wanted to die, suffering greatly. I have no idea if he would have opted to end his life earlier, to end his suffering earlier, but I wish he had the option.

It would be helpful to know whether a majority of Massachusetts legislators think others should have that option, too, but for the last eight years they have punted on the Death with Dignity Act, bottling it up in committee so that it dies without the dignity of a full and fulsome hearing.

Five years ago, a referendum that would make it legal for physicians to prescribe medications that terminally ill people could use to end their lives was narrowly defeated. But, like all social change, like all civil rights, the right to die with dignity is moving forward, inexorably.

Last month, the Massachusetts Medical Society commissioned a survey of its members’ attitudes toward what they called “medical aid in dying.” For a group that has historically opposed what some call physician-assisted suicide, the mere act of seeking its members’ opinions acknowledges the shift, much of it generational, in thinking.

In October, Dr. Roger Kligler, a retired Falmouth physician with prostate cancer, filed a lawsuit asserting he has a right to obtain a lethal dose of medication from a doctor willing to prescribe it if he becomes terminally ill and chooses to avoid more suffering.

Dr. Kligler rightly believes he’ll get a quicker answer from a court than the Great and General Court. As it has with other highly contentious matters, including same-sex marriage and the legalization of marijuana, the Legislature has been more than happy to let the courts or the public do the heavy lifting.

But even if a court agrees with Dr. Kligler’s argument, the decision could be narrowly tailored to only his case. And as the messy rollout of marijuana legalization has shown, legislating complex matters by referendum often leads to convoluted results.

The Legislature needs to take on Death with Dignity, in all its complexity.

Nine years ago, State Representative Lou Kafka sat down with one of his constituents, a guy from Stoughton named Al Lipkind, who was dying of stomach cancer. Lipkind asked Kafka to file a bill that would make it legal for doctors to write prescriptions for terminally ill people who wanted to avoid needless suffering. Kafka refiles the bill every session. The initial dozen co-sponsors have grown to 40.

“Al was able to make me see it through his eyes,” Kafka told me. “Unless and until it becomes personalized, it’s an issue you don’t necessarily think about.”

Not long after Al Lipkind died in 2009, Kafka watched helplessly as the same disease that slowly and torturously killed my dad did the same to his father.

“I watched him gasp for breath,” Kafka said.

Like me, Lou Kafka doesn’t know if his father would have chosen to end his life before enduring months of agony. Like me, he wishes his dad had the option.

Complete Article HERE!

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While I still can: dementia and assisted death

By Mark Brandi

[A] friend recently lost his father to dementia, but not before witnessing a small miracle.

In his final days, despite having been non-verbal for more than two years, his father suddenly became fluent and conversational. He recognised relatives by name and regaled them with old tales, offering his grandchildren a brief, magical glimpse of the man he once was.

Even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate.

The only problem? He thought it was 1953.

Dementia is an insidious and peculiar disease. And it poses difficult questions about the nature of identity. What is it that makes us who we are? And at what point do we lose our sense of self?

As Victoria moves toward a scheme of assisted dying for the terminally ill, one of the recommended preconditions is a “sound mind”. As such, a parliamentary committee (invidiously tasked with an “inquiry into end of life choices”) has recommended dementia sufferers be excluded from the scheme.

On the face of it, this appears logical, as there are obvious risks in allowing others to decide what is tolerable for a patient. But is the potential for abuse a good enough reason to deny access to all dementia sufferers?

An alternative – which the committee does not support – is the provision of an advance directive. While still able to make decisions, we could outline future circumstances (such as the late stages of dementia) where we might consider our lives unbearable. Such measures have been in place in the Netherlands since 2002.

If an advance directive were allowed here, it could include tailored safeguards – such as the opinions of trusted family and friends – about the quality of our lives (in addition to the standard battery of medical tests).

But even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate. It remains an area of deep moral, ethical and practical complexity.

It is also one in which I have a personal stake – my father has advanced dementia.

Over the past three years, he has lost capacity for the things he once enjoyed – politics, gardening, and even freedom to leave the home unaided.

If an advance directive had been available before his illness, it is possible (if not likely) he would have opted out.

Yet my father might now be described as – what some cheerfully term – “happily demented”. He is usually in good spirits, enjoys the pleasures of food and family, and is physically active. By some measures, he might be more content than before his dementia.

Such circumstances are not isolated. In evidence to the parliamentary inquiry, one carer stated: “I know the man my husband used to be, and I know he would not want to be the man that he is today; however, he is happy as the man he is today … whose version do we hold with, or think is more valid?”

This question cannot be answered with certainty.

For example, in the later stages of dementia, we may not appreciate a film in the same way we do now. But we may find pleasure in the sight and sound of certain actors, or even the appearance of particular colours on the screen.

Still, we cannot know how the disease might manifest in individual cases. And there are risks in allowing dementia sufferers to be part of the scheme. But these risks must be weighed carefully against our right to make important choices about our lives.

Should the parliamentary committee’s recommendations be followed, my father will not face such a crucial decision. Whether there may be a small miracle near the end of his life, time will tell.

We, his family, can only bear witness.

Complete Article HERE!

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A life lesson in the death of a much-loved cat

By Tim Dick

[O]ur household had a late and unwelcome entry in the death toll of 2016. It came with Rocko, who scraped in with a departure on Friday. Granted, the death of a cat is of less moment to most than that of George Michael, and he was a celebrity only to those who knew him, but our wee furry guy managed to give us life lessons without the irritation of a life coach, and company without human complications.

His first life lesson to me was early rising. His day, and therefore mine, began with regularity at 5.30am with a gentle whisker brushed across my face, then the nudge of a cold nose if that didn’t work, then a bite to the nose if all else but mild violence failed to rouse the deliverer of his morning meal.

 


 

Once the irritation has passed that the cat alarm once again chose my side of the bed, and never the other, I was up, fed, and at work before most others, getting my stuff done, and setting up an early exit at the other end of the day. Rocko was a productivity booster devoid of mumbo-jumbo: get up early, do your work, go home.

His second lesson was to demonstrate the benefits of adequate insurance, by having no insurance. Pet insurance might sound faintly ridiculous, but having spent thousands on vet bills in the last two years, and unless you’re able to save for unknown future medical catastrophes, it’s a no-brainer. We’re now breaking even on the insured dog, but were too slow for the cat. It’s compulsory for any future pet.

Rocko the cat

His third lesson was the decision in which he took no part, but which was the right thing to do, and which is the law makes impossible for people: euthanasia.

Nearing Christmas, he became bloated, carrying lymphoma in his gut, heart disease, and a tumour on his liver. We decided to put him down, but delayed it a week or so. He didn’t make it that far, forcing the decision to euthanase after he’d collapsed at home.

I knew something bad was up when, for the first time, he didn’t shred my arms while being shoved in the cat carrier.

As he lay dying on the vet table, our sadness came tinged with relief that the law is gentle enough to allow vets to put down pets when their time has come. His suffering was exceptionally short, his end far more peaceful than we force some people to endure.

After the narrowest of defeats for a euthanasia bill in South Australia in November, the next test of whether politicians will allow people the same mercy as we afford our pets comes in Victoria later this year. The Andrews government said in December it would bring legislation to allow some dying adults to die sooner than they otherwise would.

The right will be restricted to those who have the capacity to make decisions, who are at the end of their lives because of a terminal illness. Two doctors will likely have to approve the prescription of a euthanasia drug, and patients unable to take the tablet themselves could be helped by a doctor.

It strikes the right balance between the right of the dying to avoid unnecessary pain, and protecting others from an unnecessarily hasty death. It merely adds another option for those at the end of their lives, rather than being pumped with morphine to dull the pain of a disease taking its course.

It would end that fake distinction between the legal form of hastening death known as passive euthanasia (like doctors turning off a life-support machine), and the form of hastening death known as active euthanasia (a doctor-provided pill or injection that causes death) which remains illegal across Australia even with the ardent wishes of the patient.

It’s now two days after we put Rocko down, and I am using the home computer without feline keyboard interference for the first time in years. On the screen, which I can see without having to peer around a cat head, is an e-book called Damage Done, a collection of personal essays compiled by Andrew Denton’s advocacy group, Go Gently Australia.

A short way in is an extraordinary death notice, published in The Age last year, which captures the need and urgency for voluntary euthanasia far better than I can. It speaks for itself: “Andrew Ross Carswell, a skilled musician, at times tedious intellectual, much loved friend of many, valued family member, and adored husband to Carolyne, died an unnecessarily protracted, distressing death on Sunday 13 March as a result of the continuing absence of legislation that could have otherwise allowed a man of his integrity experiencing the final stages of liver cancer peaceful, timely access to euthanasia. May he finally be able to enjoy the long sleep he had been anticipating and may the anti-euthanasia lobby collectively experience the tediously prolonged, objectionable demise they are so determined to impose on everyone else.”

Complete Article HERE!

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A Dying Man’s Wish To Donate His Organs Gets Complicated

By Karen Shakerdge

Dave Adox, right, and his husband Danni Michaeli at their home in South Orange, N.J., in the fall of 2014. Adox was diagnosed with ALS at age 42 and became almost totally paralyzed within six months. He died last May.

[A]t 44 years old, Dave Adox was facing the end of his two-year battle with ALS, also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.

He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.

“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. Adox had spent a career with words that now came slowly — he was a freelance reporter, including for public radio, then went on to work in advertising.

“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.

Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, where Adox often had been treated, and have

Family members surround Adox on the day that he died last May. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill.

his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.

In May his family and friends flew in from around the country, and joined neighbors for a big celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”

But their plan suddenly changed when University Hospital’s attorneys intervened.

“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.”

Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted suicide or euthanasia — the key being that the patient is already in the hospital.

But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.

Dr. John Bach, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician, and understood and approved of his patient’s plan to end his life and share his organs.

“I could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,” Bach says. “But he wanted his organs to be used to save other people’s lives!”

Other physicians at the hospital supported Adox’s plan, too.

“We have an ethics committee that approved it 100 percent,” Bach says. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”

Adox before he was diagnosed with ALS. He decided to become an organ donor so that other people could enjoy a longer life.

University Hospital has declined several requests for comment, but Bach says the hospital’s attorneys were concerned about liability.

“The legal issue is: What is euthanasia?” Bach explains. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”

Adox had an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”

Having an advance directive on file is especially important for ALS patients, Bach says, because they can eventually become “locked in,” unable to express their wishes.

“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach says. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”

In this particular case, the hospital wouldn’t have had to rely on the directive, Bach noted: Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient’s wishes could not be met.

“Myself and all the other doctors who took care of him in the hospital were almost as upset about it as he and his husband were,” Bach says.

Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.

Mezrich acknowledges this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.

“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible — keeping them alive no matter what,” Mezrich says. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”

Still, planning one’s death to allow for organ donation raises some thorny questions, says Arthur Caplan, director of the division of medical ethics at New York University and author of Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.

Adox and Michaeli with their son, Orion, in the winter of 2015.

Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan points out.

“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he explains.

This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public discussion because “it’s too controversial.”

“If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan says.

But that approach would have a downside, too, he continues. People might perceive doctors as more focused on “getting organs” than caring for dying patients.

Adox takes one last walk with family and friends in New York’s Central Park before going to a hospital to be disconnected from the ventilator that kept him alive.

There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.

About a year ago there, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.

“Obviously we’re all sensitive to any perception of assisted expedition of death,” says Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”

After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.

In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.

“There was a hospital partner,” Friedman says, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, [and was] prepared to be supportive of what Dave wanted and would be able to provide a bed.”

Finally, on the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.

“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounts, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation they disconnected his breathing machine.”

And in the end, Adox’s wishes were met — he was able to donate his liver and kidneys. Michaeli says he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.

“The person we were trying to do a direct donation for was a match,” Michaeli says. “And he has Dave’s kidney right now.”

Complete Article HERE!

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Regina woman’s story reveals growing pains of assisted dying law

Jean Napali and her mother Ruth Schroeder.

 

By Jonathan Charlton

[I]n her last days, 93-year-old Ruth Schroeder lay in bed at Grace Hospice in Regina, slowly dehydrating herself to death because she wasn’t able to die on her own terms.

Schroeder had colon cancer and doctors declined to operate out of fear she wouldn’t survive surgery because of her age — an outcome she’d have been fine with, according to her daughter, Jean Napali, who lives in Vancouver. 

Partly that was because of the pain, but also because the painkillers made it hard to concentrate. Schroeder couldn’t really read, watch TV or even do the crossword puzzles she had long enjoyed.

“During the past year she had been making it very clear that she really was done,” Napali said.

Schroeder had talked with her family about ending her life, and with any doctor who would listen while she was in palliative care at Pasqua Hospital in June; she had followed the development of federal legislation for medical assistance in dying (MAID), which was passed by the Liberal government that month.

However, she then learned she had little time left.

“At that point mom felt very relieved that she only had three months to live and she kind of dropped talking about MAID because she was like, ‘There is going to be an end to this, maybe it’s not the route that I need to go,’ ” Napali recalled.

Schroeder lived at home for as long as she could over the summer, cooking her own meals and doing her own laundry with support from her children and a housekeeper. On Aug. 1, she fell in the middle of the night, aggravating the nerve centre on which her tumour lived; the lightest touch on her leg became excruciating. After two days in an emergency room, she was moved to the hospice. 

Napali is a mental health worker and her sister was a longtime nurse, so they were able keep their mom off drugs that harmed her quality of life. This included an anti-depressant Schroeder’s palliative team put her on after she expressed interest in MAID, Napali said.

The siblings feel their mother wasn’t taken seriously because of her age.

“As a family we were really floundering, trying to figure out how to put this in place. And it wasn’t until after she had died that we realized she could have signed the forms at the end of June when she was talking with the doctors about it and started the whole procedure,” Napali said.

When Schroeder told her she would stop eating and drinking, Napali called her mom’s doctor about ending her life. However, the doctor wasn’t available for a week. When she did arrive, Schroeder’s painkillers had been increased so much that while she knew her own name, she didn’t know the month and said the year was 1976 instead of 2016. The doctor deemed her not competent enough to consent.

“That upset us quite a bit because it was very clear that she was going to be in a lot of pain — that she was in a lot of pain — and that basically she would just be dehydrating to death over the next few days or weeks,” Napali said.

Saskatchewan Medical Association president Dr. Intheran Pillay.

The federal legislation does not allow for people to give advance consent, when drugs don’t cloud their judgment, for medical assistance in dying.

Because Schroeder wasn’t on any life-prolonging medications she could stop taking, it took her 16 days to fatally dehydrate.

“Somehow to me, that seems wrong, that she needs to suffer through that,” Napali said.

“If a dog was kept in a vet’s office to dehydrate to death for two weeks, everybody would be totally up in arms and be calling it inhumane. And that vet would probably lose his license. And yet for a person, that’s deemed acceptable,” she said.

“It was just really hard for us because as her children we knew what Mom wanted. She was ready to go and she wanted MAID but that wasn’t something that could happen for her. I don’t want other people to have to go through what we went through in terms of not having out mom’s wishes done.”

Aside from the roadblock imposed by the law, Napali was never clear on whether her mother’s doctor even agreed with MAID, and has come to believe most doctors in Saskatchewan won’t perform it. 

“I think doctors need to be really clear as to whether they are willing to go that route or not, and if they’re not they need to pass their patient on to somebody who is willing to take a look at that.”

The Saskatoon Health Region is considering a policy to protect the identities of health care providers who participate in medical assistance in dying, fearing that otherwise no one would be willing to provide the service.

The Saskatchewan Medical Association was unable to find any doctors who participate in MAID and were willing to be interviewed for this story. 

SMA president Intheran Pillay said some doctors are in favour of MAID, but others object and feel palliative care should be improved, believing that some requests stem from a lack of it. There’s no way of knowing what that split is, he said.

Jean Napali and her mother Ruth Schroeder.

Health care workers who provide abortions in the U.S. have suffered violence, and some fear similar retaliation around MAID, he said.

Some physicians may work in facilities such as Catholic Health Association hospitals which oppose MAID, and don’t want their beliefs public. Others don’t want their patients to distance themselves if they have different viewpoints, he said.

A person’s primary point of contact for MAID should still be their doctor, who can discuss all options to improve pain control and comfort, he said.

“In a majority of cases we’re able to keep the patient really well controlled with regard to pain. I’ve never, in the 24 years I’ve been in practice, had a problem in terms of referring patients to the appropriate specialist to get that patient the care that they need to make them comfortable.”

People seeking information can look up the websites of the College of Physicians and Surgeons of Saskatchewan, the Canadian Medical Association, the SMA and the Saskatchewan government, he said. SHR this month approved its MAID policy, which includes a decision-making guide.

Eight people in the province have received MAID since the legislation passed, according to the health ministry.

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In Colorado, A Low-Price Drug Cocktail Will Tamp Down Cost Of Death With Dignity

The cocktail, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far.

By JoNel Aleccia

As Colorado’s aid-in-dying law takes effect this month, proponents say they’ll make sure terminally-ill patients have access to a new, affordable drug concoction that will avoid the $3,000 cost of a common lethal sedative that has skyrocketed in price.

Officials with Compassion & Choices, an advocacy group, are reaching out to pharmacies statewide to confirm that they’ll stock components of a lethal four-drug cocktail to substitute for secobarbital, known as Seconal, the pricey sleeping pill most often prescribed to induce death.

It’s the second time in a year that right-to-die advocates have come up with a substitute for Seconal after Canadian drugmaker Valeant Pharmaceuticals International Inc. acquired the medication in February 2015 — and abruptly doubled the $1,500 retail price.

“We were looking for something more affordable and available,” said Kat West, an attorney and policy expert with Compassion & Choices.

The new law, which was passed by a two-thirds majority, was signed into law on Dec. 16 by Gov. John Hickenlooper. Colorado joins five other states — Oregon, Washington, Vermont, Montana and California — in which terminally ill patients, usually those expected to live six months or less, can choose to take doctor-prescribed drugs to end their lives. In Oregon, at least 991 patients have died after taking drugs prescribed since the law took effect in 1997. In Washington state, at least 917 have died under terms of the law enacted in 2009.

Access to the medications can depend, in part, on cost. Many health insurance plans pay for aid-in-dying drugs, advocates said, but some don’t, and the medications aren’t covered by federal programs such as Medicare or Catholic-run health care systems. Medicaid programs for the poor and disabled in Oregon and California will pay, but not those in Washington state, Vermont or Montana. In Colorado, it’s still unclear.

That can create a barrier for terminally ill patients who want to use the law, said Beth Glennon, a client-support coordinator for End of Life Washington, an advocacy group.

“The cost does affect people’s decisions,” Glennon said.

As of March, the latest data available, a bottle of 100 capsules of 100-milligram Seconal had a retail price of $3,082, according to data from Truven Health Analytics. Ten grams is a lethal dose.

When Oregon’s law began, the cost was about $150, recalled Dr. David Grube, national medical director for Compassion & Choices and a family doctor who has practiced in the state for nearly 40 years. He calls the price hikes “an almost-evil practice of greed.”

“I think it’s the black side of capitalism,” he said. “It really breaks my heart.”

Valeant officials didn’t respond to requests for comment, but in March firm officials issued a statement saying that secobarbital is approved only for treating short-term insomnia, epilepsy and for use in pre-operative anesthesia.

“If it is being prescribed for off-label uses, it is not something for which the product is manufactured or intended,” the statement said.

To fight the high prices, doctors in Washington state experimented last year with a cheaper mixture that included three drugs — phenobarbital, chloral hydrate and morphine sulfate. The components are widely available and cost about $500 for a lethal dose. But the combination turned out to be too harsh, said Dr. Robert Wood, a volunteer medical adviser for End of Life Washington.

“The chloral hydrate mixture was too caustic for some folks and our volunteers didn’t like using it,” because some patients became distressed, Wood said.

Most doses of lethal medication are bitter, often requiring patients to take anti-nausea drugs. But the new mixture was not only bitter but also caused a burning sensation in the mouths of some patients, said Glennon. “There was some profound burning,” she said. “We didn’t like working with it. As a volunteer, you want to reassure people. We’re about a peaceful, dignified death.”

Wood and his colleagues came up with a new option this summer, a four-drug mixture that includes diazepam, digoxin, morphine and propranolol, known as DDMP. It costs between $300 and $600.

The mixture, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far, Wood said.

“It is no more difficult than Seconal to ingest and it seems to work quite well,” he added.

The mixture has been used “a fair amount” in California, where an aid-in-dying law took effect in June, said Grube. It’s not yet known how many terminally-ill patients have died under that state’s law, but dozens have requested prescriptions, officials said.

Valeant was widely criticized for raising the price of secobarbital, a popular sedative in the 1960s and 1970s that lost its patent status in the early 1990s. It has been used for aid-in-dying patients since Oregon passed the first U.S. law in 1997, which was modeled on similar action in the Netherlands, where secobarbital was the drug of choice.

Another sedative, pentobarbital, was also frequently used, but supplies in the U.S. became expensive and scarce after European drugmakers objected to its use as an execution drug in death penalty cases.

Doctors and pharmacists are not obligated to participate in aid-in-dying treatment under existing laws, including the Colorado action. In a recent poll, about 40 percent of more than 600 doctors surveyed said they would be willing to prescribe lethal medication, 42 percent said they wouldn’t and 18 percent weren’t sure, noted Dr. Cory Carroll, a solo practice family physician in Fort Collins, Colo., who endorsed the measure.

“The docs that are in opposition have a right to their beliefs, but they don’t have the right to control others,” Carroll said in a recent press conference.

West of Compassion & Choices anticipates that Colorado’s law will be used immediately, as similar laws in other states have been.

“We’re already getting calls from terminally ill people in Colorado who want to access this law,” she said. “I fully expect people to begin requesting prescriptions.”

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