Tag: Assisted Dying

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How doctors really die

By Carolyn Y. Johnson

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In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly longer in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” wrote Craig C. Earle in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think that their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. The doctors who died were mostly white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing at home, it’s much harder to write a prescription.

Complete Article HERE!

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Berkeley Physician Opens Practice Focusing on Aid-in-Dying

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Lonny Shavelson is consulting with doctors who have questions about California's "End of Life Option Act." He will also see patients after the law takes effect next week.
Lonny Shavelson is consulting with doctors who have questions about California’s “End of Life Option Act.” He will also see patients after the law takes effect next week.

Few people have the unusual set of professional experiences that Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years — while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.

Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are 005terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.

I first met Shavelson in 1996 as I was covering the reaction to Oregon voters’ approval of Measure 16, the state’s Death with Dignity Act.

Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.

Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.

I first met Shavelson in 1996 as I was covering the reaction to Oregon voters’ approval of Measure 16, the state’s Death with Dignity Act.

Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.

Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.

I first met Shavelson in 1996 as I was covering the reaction to Oregon voters’ approval of Measure 16, the state’s Death with Dignity Act.

Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.

He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.

The wall of Lonny Shavelson’s office, lined with covers of the books he has written.
The wall of Lonny Shavelson’s office, lined with covers of the books he has written.

Then last fall came the surprising passage of California’s End of Life Option Act, giving terminally ill adults with six months to live the right to request lethal medication to end their lives. The law takes effect June 9.

Shavelson decided he had to act, although he feels “quite guilty” about having been away from the issue while others pushed it forward.

“Can I just sit back and watch?” Shavelson told me from his cottage office in his backyard in Berkeley. “This is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change … [that] very, very few people know anything about and how to do it.”

His website, Bay Area End of Life Options, went up in April, and he’s outlined the law at “grand rounds” at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves, including offering care to patients who choose him as their “attending End-of-Life physician,” as he indicates on his site.

Shavelson is adamant that this is “something that has to be done right.” To him, that means starting every patient encounter with a one-word question: “Why?”

“In fact, it’s the only initial approach that I think is acceptable. If somebody calls me and says, ‘I want to take the medication,’ my first question is, why? Let me talk to you about all the various alternatives and all the ways that we can think about this,” he predicts he will say.

Shavelson worries that patients may seek aid-in-dying because they are in pain, so first, he would like all his patients to be enrolled in hospice care.

“This can only work when you’re sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you’re doing it otherwise, it’s because of lack of good care.”

California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in 2014 in Oregon, 155 lethal prescriptions were written under the state’s law, and 105 people ultimately took the medicine and died, a death rate under this method of less than 0.5 percent.

Under the law, two doctors must agree that a mentally competent patient has six months or less to live. One of the patient-doctor meetings must be private, between only the patient and the physician, to ensure the patient is acting independently. Patients must be able to swallow the medication themselves and must state, in writing, within 48 hours before taking the medication, that they will do so.

Shavelson says he has been surprised by the lack of understanding he hears from some health care providers about the law. One person insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer’s disease. To be clear, the law takes effect next week, and patients with dementia cannot access the law because they are not mentally competent.

The law does not mandate participation by any health care providers. Many physicians are “queasy” with the new law, Shavelson says he’s hearing, and are unwilling to prescribe to patients who request the lethal medication — even though they tell him they think the law is the right thing to do.

Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book “A Chosen Death.”
Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book “A Chosen Death.”

“My response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody’s gall bladder,” he says. “If it’s a medical procedure you believe in and you believe it’s the patient’s right, then it’s your obligation to learn how to do it — and do it correctly.”

Shavelson said he predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.

Burt Presberg, an East Bay psychiatrist who works specifically with cancer patients and their families, said a talk he attended by Shavelson sparked a conversation at his practice. Yet, in my own talk with him, he peppered his statements with “on the other hand,” as he clearly wrestled with his own comfort level of handling patient requests.

Presberg spoke of his concern that patients suffer from clinical depression at the end of life, sometimes feeling they are a burden to family members who could “really push for the end of life to happen a little sooner than the patient themselves.” He spoke from his experience of successfully treating terminally ill patients with clinical depression.

“Depression is something that’s really undertreated,” Presberg said. “I often talk to people about the difference between normal sadness and normal grieving at the end of life.”

He said he believes Shavelson will be aware of treating depression, “but I do have concerns about other physicians,” he said. “On the other hand, I think it’s really good that this is an option.”

Shavelson says he’s already received a handful of calls from patients, but he’s mostly spent this time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist that will accept prescriptions for the lethal dose of medicine.

Then he returns to the patient. “It’s important … that we’re moving forward,” he says. “It’s crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.”

To many of the doctors who feel “queasy” about moving to end a patient’s life, this type of care “isn’t so tangibly different to me,” Shavelson says, than other kinds of questions doctors address.

“I’m just one of those docs who sees dying as a process, and method of death is less important than making sure it’s a good death.”

 Complete Article HERE!

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Oregon’s aid in dying law: Three doctors reflect on their experiences

by LAURA KANE

Since Oregon’s Death with Dignity Act was passed in the mid-1990s, doctors have had to reconcile their Hippocratic oath with prescribing medication to end a life. Here are the experiences of some doctors in the state.

when doctors grieve

Dr. Eric Walsh

In 1994, Dr. Eric Walsh wrote an article in a local newsletter explaining why he voted against legalizing medical aid in dying. Walsh, a medical director of a small hospice, wrote that it would be impossible for a doctor to know a patient well enough to make such a crucial decision.

By the time the law came into effect in 1997, Walsh realized that he had written about one of the central fallacies of being a doctor — that you can know a patient better than they know themselves. “It’s the patient who has the disease, not you,” he said. “I just have to be there to listen to them, decide they’re not mentally ill, decide they have six months to live, and let them control the timing and manner of their death.”

Walsh said the first request he received was a profound emotional experience. The patient, a well-educated man with a strong marriage, had terminal cancer and was in so much pain he had to lie on the floor of the doctor’s office. Walsh wrote the prescription, but patient never used it.

“I can’t tell you how relieved I felt,” Walsh recalled. “It’s like an insurance policy against suffering.”

The palliative-care doctor has written 20 such prescriptions in 18 years, but one of his patients was Brittany Maynard, a 29-year-old newlywed with a terminal brain tumour who moved from California to Oregon for aid in dying in 2014. She became the public face of the assisted-death movement in the U.S., prompting her home state to recently adopt legislation.

Walsh’s voice changes as he speaks about Maynard, making clear the emotional bond forged between doctor and patient in these cases.

“She was an amazing human being,” he said. “She was brilliant. She spoke in paragraphs that sounded as though she had written them out and edited them … She was very clear-eyed and thoughtful and intent.”

Asked how he felt when she used the medication, he replied simply, “really sad.”

Dr. Kenneth Stevens

Jeanette Hall was inconsolable the first time she met Dr. Kenneth Stevens. It was 2000, and Hall had been diagnosed with inoperable anal cancer. As she was leaving the hospital, she said a staff member asked her whether she had a burial plot. She was unequivocal — she wanted aid in dying.

Stevens, an oncologist, explained that while her tumour was inoperable, it could be treated with chemotherapy with a good chance of success. Hall refused. Without treatment, she had six months to live, meaning she qualified for aid in dying.

After about four weeks of urging her to do the treatment, Stevens learned she had a son training to be a police officer. “Wouldn’t you like to see him graduate?” he asked her. “Wouldn’t you like to see him get married?” Finally, Hall agreed to the chemotherapy. The tumour melted away.

Sixteen years later, Hall credits Stevens with saving her life. “If it weren’t for Dr. Stevens, I wouldn’t be here,” she said, beaming. “It’s great to be alive.”

Doctors who support the law are dismissive of Hall’s story. Dr. David Grube said any reasonable doctor would have urged her to undergo the treatment, while Dr. Peter Reagan said the story is proof the law enabled doctor and patient to have difficult conversations openly.

But Stevens, president of opposition group Physicians for Compassionate Care and who, like the group’s national director Dr. William Toffler, lost his wife to cancer, takes a different view. He said Oregon’s law has allowed some doctors to lose touch with their purpose — to cure patients.

“The law is to protect the physician, it’s not to protect the patient,” he said. “As long as the patient qualifies, it’s a licence to kill.”

Dr. Peter Reagan

When Dr. Peter Reagan voted for medical aid in dying in 1994, he was more concerned with another measure on the ballot to fund libraries. He hadn’t thought much about how the Death with Dignity Act would impact his work as a family doctor, until the law finally came into effect in 1997.

The following year, he was referred an 84-year-old patient who’d had breast cancer on and off for 30 years. She was suffering, terminal and unwavering in her request for aid in dying. “She was very, very clear,” Reagan recalled. “There was just not a scrap, shred of doubt about her.”

It was only when he called the pharmacy that he learned he was the first doctor in the state to prescribe the medication. Although doctors are not required to be present, he was with her family when she died. Before she took the pills, she asked him to kiss her on the cheek.

“Somebody says to you, ‘I want to talk about the possibility of aid in dying,’ all of a sudden you’re in their family. Suddenly, you’re intimate,” he said. “With her, I almost felt like I was on board. I was dying too. The idea that I would wake up the next morning — I hadn’t thought about that until it happened.”

Reagan, now retired and a spokesman for advocacy group Compassion and Choices, said the emotional intensity of the experience grows with each person who requests aid in dying. He said he never suggests using the law to anyone and prescribing the pills is a difficult thing to do every time.

“People have to talk you into it,” he said. “The moment when they actually successfully talk you into it and you say, ‘You know what, I see your point, I respect it so much and I respect you so much that I will do this for you,’ that moment is so filled with relief and appreciation.”

Complete Article HERE!

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Volunteer comforts those near the end of life

By George Basler and Connie McKinney

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Kathy Pfaffenbach has volunteered at Mercy House of the Southern Tier since it opened. She helps provide comfort and care to terminally ill patients.

Kathy Pfaffenbach can understand how some people don’t want to think about the issue of death and dying.

But three days a week, the 64-year-old Binghamton woman confronts this reality up close and personal as a volunteer at Mercy House of the Southern Tier — the first home for the terminally ill in Broome and Tioga counties.

She considers it a privilege, not a burden. “Death is so private and personal. I feel humbled that (the residents) allow me to become part of their daily lives,” she said.

Pfaffenbach began volunteering the first day the nonprofit community care facility opened in early March. She’s one of more than 200 volunteers — along with three full-time and seven part-time staff members — who staff the Endicott facility 24 hours a day, seven days a week.

One of Mercy House’s core missions is ensuring “nobody dies alone,” and volunteers are essential in fulfilling this mission, said Amy Roma, director of resident care. They cook, they clean and they help residents with personal care. Just as importantly, they sit with residents, providing companionship and caring as the terminally ill reach the end of their lives.

“So far, we’ve had six residents die, and nobody’s died alone,” Roma said, with a touch of pride.

Pfaffenbach started volunteering eight months after retiring as supervisor of emergency services for Catholic Charities of Broome County. In that capacity, she helped provide in emergencies and directed two food pantries that served some 5,000 people each month.

“That was a feel-good job. When you unlocked the building in the morning, you knew you were going to make a difference in someone’s life,” she said.

She found she missed working with people after spending 27 years with the agency and was looking for something to fill her days.

“Retirement’s not what it’s cracked up to be,” she said, with a laugh. “How many times can you clean your house?”

Sitting home gets old fast if you don’t have a purpose to get up in the morning, but Mercy House provided that purpose. “It’s a way for the whole community to embrace a person as they make their next step into eternal life,” Pfaffenbach said.

The facility, which opened after several years of planning and fund raising, is in the former St. Casimir’s Church, at 212 N. McKinley Ave. in Endicott. Modeled on a similar facility in Syracuse, the 10-bed home will serve patients who have been diagnosed in the last months, or weeks, of their lives and can no longer stay in their own homes.

The facility is bright and airy, with a lounge area for residents and their families, and a nondenominational chapel. Staff work to make it as close to home as possible, Roma said, including personal touches. When a resident dies, staff place a rose and prayer card on the bed so friends and family can spend a moment remembering the person.

Organizers call it a leap of faith. The annual cost for Mercy House is about $600,000 a year and will be paid mostly by donations and fundraising.

As a volunteer, Pfaffenbach spends two days a week helping to made breakfast for residents. The third day, she works as a caregiver, doing a variety of jobs. She takes residents to the bathroom,brings them to the dining room or simply sits with a resident. Sometimes they talk; sometimes she just provides quiet comfort.

“Kathy is a great volunteer. You can tell when she comes in that she loves the residents. She’s here for all the right reasons,” Roma said.

Pfaffenbach’s first job at Catholic Charities was working in the pregnancy and foster care program, she said. She saw the beginning of life, and now she’s seeing its end.

The most challenging thing about this work is seeing a relationship end when someone dies, she acknowledged. Residents become part of the fabric of your life, but fabric wears out, she said. Still, it’s always replace it with another thread, Pfaffenbach added quickly

Every time she walks into Mercy House, she feels a sense of peace and tranquility. Some deaths are easy and some are hard, but when you see them as the next step into eternal life, it’s not fearful, she said.

“I’m here to give comfort,” she emphasized.

Complete Article HERE!

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Death with Dignity doctors thwart drugmaker’s price hike with new medication

After a Canadian drugmaker doubled the price for the most commonly prescribed aid-in-dying drug, Washington Death-with-Dignity advocates created a cheaper new medication to help terminally ill patients who choose to end their lives under the law.

Valeant Pharmaceuticals
Valeant Pharmaceuticals

By JoNel Aleccia

Washington state Death with Dignity advocates have found a way to thwart a drug company that abruptly doubled the price — to more than $3,000 — of the lethal medication some terminally ill patients use to end their lives.

They’ve come up with a new mix of medications that induces death for about $500, said Dr. Robert Wood, a longtime University of Washington HIV/AIDS researcher who now volunteers with End of Life Washington, an advocacy group.

“We thought we should concoct an alternative that would work as well,” Wood said. “It does work as well.”

Now doctors in Oregon have adopted the drug mix, too, as a way to ensure that cost doesn’t prevent terminally ill patients from making the choice they want under the state’s right-to-die law. And in California, where a similar law takes effect later this year, officials are considering it as well.

“We’ve always had the belief that no matter who you are, whether you’re rich or poor, you should have access to a lethal dose of medicine that does what you want: to end your life in a peaceful and dignified manner,” said George Eighmey, president of the board of the Death with Dignity National Center, based in Portland.

The issue arose last year, when Valeant Pharmaceuticals International of Quebec acquired the rights to Seconal, the trade name of secobarbital sodium, the most commonly prescribed drug for aid-in-dying patients. The firm quickly doubled the cost, from $1,500 to more than $3,000 — and up to $5,000. That’s on top of previous retail price increases for the nearly 90-year-old sedative that once sold for $150 for a lethal 10-gram dose.

The impact on patients considering using the drugs was immediate, said Beth Glennon, a client-support coordinator for End of Life Washington.

“People were horrified. They were daunted. They thought it was criminal,” she said. “The cost increase has been significant for some people. Some are on a very fixed income.”

Some patients were worried about burdening their families with the extra expense of the medication, she said.

Health insurance often doesn’t pay for aid-in-dying drugs and they are not covered under Medicare. In Washington, the drugs aren’t covered under the state Medicaid plan or by several Catholic health systems that prohibit doctor-aided death based on religious objections.

So Wood and other doctors in the state decided to seek an alternative to the high-priced drug sold by Valeant, which is among firms under fire by Congress for hiking prices on desperately needed drugs.

They turned to a compounding pharmacist, who doesn’t have access to the exact ingredients included in secobarbital. The result was a less-expensive mix of three medications: phenobarbital, chloral hydrate and morphine sulfate, all in powdered form to be mixed with water, alcohol, applesauce or juice.

Alternative’s side effects

Last year, 55 of the 155 Death with Dignity patients seen at End of Life Washington chose the cheaper dose, Wood said. They opted for it even though the new medication tastes worse, burns the mouth and may take longer to work than Seconal.

“Roughly a third decided they’d try the untried and more burning method,” Wood said.

The other lethal drugs are bitter, often requiring patients to take anti-nausea drugs before ingesting them, he added.

Washington doctors shared their discovery with colleagues in Oregon, which was also grappling with the secobarbital price increase, Eighmey said.

In 2015, 16 of the 132 people who died in Oregon under the state’s Death with Dignity Act provisions ingested the new mixture.

Washington doctors also have been talking with colleagues in California, which passed a right-to-die law last year, becoming the fifth state to legalize the practice, along with Oregon, Washington, Vermont and Montana.

News reports last month suggested that Valeant increased the price as a reaction to California’s law, a contention rejected by company officials.

The increase came in February 2015, a month after the idea was proposed, but the law wasn’t signed by Gov. Jerry Brown until October, the firm noted.

In addition, Valeant said that secobarbital should be used for short-term insomnia, epilepsy and preoperative anesthesia and is not intended for any other use.

“The suggestion that Valeant raised the price to take advantage of a law that had not yet passed, for a use for which the drug is not even indicated, defies common sense,” officials said in a statement.

Valeant officials, along with those from Turing Pharmaceuticals, faced scrutiny in Congress this year after federal lawmakers released excerpts from documents detailing how drugmakers hiked prices to wring more revenue from new medications, including lifesaving drugs.

“Many companies are lining their pockets at the expense of the most vulnerable families in our nation,” Rep. Elijah Cummings, D-Maryland, said in a statement after releasing documents from Valeant and Turing Pharmaceuticals before a hearing on rising drug prices.

Valeant bought two lifesaving heart drugs, Nitropress and Isuprel, then tripled the price for one and increased the other sixfold, The Associated Press reported.

Under Death with Dignity law provisions, it’s up to doctors to choose and prescribe the drugs used to end patients’ lives, Eighmey said. Seconal became the drug of choice when Oregon’s law took effect in 1997 because it was used in the Netherlands, which provided a model for the first U.S. effort.

The drug was a popular sedative widely misused in the 1960s and 1970s, when it was associated with accidental overdoses, Eighmey explained.

It went off-patent in the early 1990s and some generic versions became available. But the drug fell out of favor as other sleeping aids, including Ambien, grew more popular. Because of the drug’s dwindling market, there were no generic competitors when Valeant acquired it and increased the price. Valeant reported the firm has sold only 1,000 units of Seconal since acquiring the brand in February 2015.

New drug of choice?

In 2014, 176 terminally ill patients in Washington received prescriptions to help end their lives and 170 died, according to the state Health Department. Of those who took medication, about two-thirds used secobarbital. The Washington act, which went into effect in 2009, allows terminally ill patients with less than six months to live to request lethal medications from their doctors.

The remaining patients used pentobarbital, a sedative used in death-row executions that became hard to get after European drugmakers cut off the U.S. supply to protest the practice.

As of 2014, at least 725 adults with terminal illnesses had chosen to end their lives with a doctor-prescribed dose of lethal medication in Washington. State figures on Death with Dignity Act patients for 2015 will be released this summer, officials said.

With stored supplies of secobarbital dwindling and the price remaining high, Washington’s concoction may become the drug of choice for most aid-in-dying patients, Eighmey said.

Most patients who end their lives under Death with Dignity provisions are educated and financially comfortable, like Ethan Remmel, a Western Washington University psychology professor and father of two who took a lethal dose of sedatives in June 2011, a year after being diagnosed with terminal colon cancer. He was 41.

The cost of the drug wasn’t a problem for their family, said his partner, Grace Wang, an associate professor of environmental studies at WWU. But she worries that financial need and a lack of insurance coverage might mean other families won’t have the option.

And the idea that a drug company would deliberately hike the price on dying patients?

“Wow, that stinks,” Wang said in an email.

Complete Article HERE!

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Physician-assisted dying: A Jewish community perspective

‘It may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying’

By Shimon Koffler Fogel

"Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death," writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto.
“Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death,” writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto.

Physician-assisted dying remains a deeply personal and contentious issue among Jewish Canadians. Some in our community support physician-assisted dying, focusing on the plight of those stricken by a terminal or debilitating illness with no possibility of pain relief. Others oppose physician-assisted dying based on traditional religious grounds or due to concerns about a knock-on effect toward more broadly applied euthanasia.

The Supreme Court of Canada decision in Carter v. Canada recast this vigorous debate by determining that Canadians, under certain circumstances, will have a right to physician-assisted death. The remaining question is how this decision should be implemented.

While there is a vibrant diversity of opinion among Jewish Canadians on this subject, there are also points of unity that reflect common values within broader Canadian society.

Who’s eligible?

One such point of unity comes in the form of concern over the eligibility requirements for physician-assisted dying. Many who support physician-assisted dying base their position on situations of terminal illness or advanced stages of severely debilitating and painful diseases for which there is no relief or cure. However, the Supreme Court decision did not limit physician-assisted dying to such circumstances.

Parliament must now choose between two distinct approaches to physician-assisted dying. The first views physician-assisted dying strictly as an end-of-life option, a means for those who are nearing death to choose how and when to die. This is consistent across all North American jurisdictions where physician-assisted dying is permitted, including Quebec.

The second approach, predominant in European countries like Belgium and the Netherlands, does not restrict physician-assisted dying in this way. In these jurisdictions, children and individuals with psychiatric disorders or minor medical conditions can be eligible for a hastened death — considerations that played no part in the Supreme Court determination.

Quebec’s physician-assisted dying law, which was subject to significant, thoughtful deliberation and passed with strong, cross-party consensus, could be instructive for federal legislation in this context. In Quebec, a patient seeking physician-assisted dying must be competent and fully informed, at least 18 years of age, at the end of life, suffer from an incurable illness, be in an advanced state of irreversible decline in capability and experience constant and unbearable suffering.

Concerns persist

Even so, significant concerns persist regarding the balance between the right to physician-assisted dying set out by the Supreme Court and the conscience rights of health-care practitioners, including physicians, pharmacists and nurses. Many have deep religious, moral and professional convictions that consider referring their patients to another, willing provider to be an unconscionable act.

Yet Parliament’s special joint committee on physician-assisted dying recommended that, at a minimum, health-care providers who object to physician-assisted dying for reasons of conscience should be required to provide a referral. This disregards the Supreme Court instruction that “the charter rights of patients and physicians will need to be reconciled in any legislative and regulatory response.”

Several viable options have been put forward to balance the seemingly competing rights of patients and health-care practitioners. For example, the Canadian Medical Association has proposed a “separate central information, counseling and referral service” to which objecting physicians would direct patients seeking physician-assisted death. Another possible accommodation would require an objecting physician to notify a designated administrator of their medical institution, who would then be responsible for transferring care in a timely manner.

Others have suggested a model where physicians would be required to report all requests for physician-assisted death to a government body that would have a registry of physicians to whom it could refer patients.

Pleasing all parties

Whatever the specific approach, with creativity and thoughtfulness, the rights of objecting physicians and patients can be harmonized. What’s more, such a process would likely facilitate improved access to physician-assisted dying for patients. The Canadian Medical Association estimates that 30 per cent of its members would be willing to provide physician-assisted death. However, it is unlikely that the remaining 70 per cent would know to whom they should refer a patient. A third-party agent would be well-suited to ensuring timely patient access while preventing the violation of physicians’ conscience rights.

Regardless, physician-assisted dying must not be the only, nor the default, end-of-life option available to patients. While respecting the division of jurisdictional responsibilities, the federal government should do its utmost to ensure that palliative care of the highest quality is universally accessible and that first-rate psychosocial supports are made available to all Canadians separately from physician-assisted dying. While it may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying, surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death.

Complete Article HERE!

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Drug Company Jacks Up Cost Of Aid-In-Dying Medication

By April Dembosky

Valeant Pharmaceuticals

When California’s aid-in-dying law takes effect this June, terminally ill patients who decide to end their lives could be faced with a hefty bill for the lethal medication. It retails for more than $3,000.

Valeant Pharmaceuticals, the company that makes the drug most commonly used in physician-assisted suicide, doubled the drug’s price last year, one month after California lawmakers proposed legalizing the practice.

“It’s just pharmaceutical company greed,” said David Grube, a family doctor in Oregon, where physician-assisted death has been legal for 20 years.

The drug is Seconal, or secobarbital, its generic name. Originally developed in the 1930s as a sleeping pill, it fell out of favor when people died from taking too much, or from taking it in combination with alcohol. But when intended as a lethal medication to hasten the death of someone suffering from a terminal disease, Seconal is the drug of choice.

“It works very quickly and very gently,” Grube says. “People fall asleep with no complications. It’s a very gentle passing.”

In 2009, Grube remembers the price of a lethal dose of Seconal — 100 capsules — was less than $200. Over the next six years, it shot up to $1,500, according to drug price databases Medi-Span and First Databank. Then Valeant bought Seconal last February and immediately doubled the price to $3,000.

Most drug companies justify such hikes by pointing to high research costs. But Grube says that’s not the case with Seconal. It’s been around for 80 years.

“It’s not a complicated thing to make, there’s no research being done on it, there’s no development,” he says. “That to me is unconscionable.”

Valeant bought several other drugs at the same time it bought Seconal, raising some of those prices as much as 500 percent. That sparked a congressional investigation into its pricing practices. (The CEO resigned Monday amid an accounting controversy).

“Valeant sets prices for drugs based on a number of factors,” the company said in a statement, including the cost of developing or acquiring the drug, the availability of generics and the benefits of the drug compared with costly alternative treatments. “When possible, we offer patient assistance programs to mitigate the effects of price adjustments and keep out-of-pocket costs affordable for patients.”

The most likely explanation for raising the price of Seconal is the lack of generics, says Mick Kolassa, founding partner of Medical Marketing Economics, a firm that advises drug companies on how to price and market their drugs.

Seconal went off patent in the early 1990s. There were some generics for a while, but then demand shrank and manufacturers abandoned them.

“So that meant when the current company bought it, they didn’t have any generic competition, simply because the market got so small that it left,” Kolassa said. “So in situations like that, a company can acquire it and raise the price.”

Kolassa says it’s also possible that the demand for even the brand-name drug is so low that it’s hard to recoup the costs of making and selling it.

“Here’s a company that said, well, we can raise the price, keep it on the market and make some money with it,” he said. “Or we can walk away and the product goes away.”

Whatever the explanation, what cancer patients like Elizabeth Wallner see is a drug company taking advantage. She has one word to describe the pharmaceutical executive who decided to double the price of Seconal: “Scumbag.”

Wallner, who lives in Sacramento, Calif., was diagnosed with stage 4 colon cancer five years ago. It spread to her liver and lungs. She always thought that if her suffering became too unbearable, she would consider ending her life. But she never thought about the price tag of the lethal drug.

“You’re going to make money off my death,” she said.

She’s most worried about her son.

“You are literally, at that point, taking the money from children,” said Wallner, who is 52. “Everything I have, if I’m going to die tomorrow, everything I have will be left to my son who will be 20 years old and almost 100 percent on his own.”

Under the California aid-in-dying law, it is optional for health insurance companies to cover the costs of the practice. Most private insurers plan to do so, according to the California Association of Health Plans. So does the state’s Medicaid program.

But for patients who aren’t covered, there is a cheaper alternative: a three-part drug cocktail that can be mixed by a compounding pharmacy for about $400.

Grube says the cocktail works just as well, but doctors usually don’t prescribe it because of the hassle some patients have to go through to get it. Seconal, on the other hand, is a ready-made pill, routinely available at most retail drugstores.

He says advocacy groups like Compassion & Choices are working on campaigns to reduce drug costs and to educate doctors and patients about the law.

“My dream is that any Californian who will choose aid in dying would have few burdens or barriers to jump through,” Grube said.

Complete Article HERE!