Death with dignity

When end-of-life wishes collide with untenable costs

My grandmother and grandfather celebrating their 50th anniversary.

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[I]ntellect was the core of my grandmother’s identity. Rita loved reading biographies, watching dramas, and traveling to new countries. But about ten years ago, her mind began to deteriorate. Now she cannot read, speak or recognize people — the antithesis of her previous intellectual self.

Then she lost the ability to eat. When a piece of food went down the wrong pipe three years ago, her lungs filled with fluid and the pneumonia that followed brought her and the entire family to the hospital. The doctor suggested we consult a palliative care specialist and let her die peacefully. The alternative was to insert a feeding tube.

Rita had recorded her end-of-life wishes. The document reads, “I feel especially strongly about the following forms of treatment … I do not want tube feeding.” But the same document also assigned her health care decisions to my grandfather. And he couldn’t let her go. “She doesn’t know how great the new technology is,” he stressed.

Despite Rita’s explicit wishes, she sits on the couch now, her vacant gaze fixed to the TV screen where Mary Poppins plays on repeat. She doesn’t comprehend that the vivid world in which Julie Andrews sings and dances is one she used to inhabit too.

For some, innovative devices like Rita’s feeding tube are a medical miracle. For others, they prolong a painful and unwanted existence. Even though Rita wanted to die at the natural time, she lost the mental capacity to execute that decision.

When faced with a terminal illness, many mentally competent people recognize the harrowing challenges ahead. These challenges span from loss of autonomy, like my grandmother’s case, to physical deterioration and excruciating pain. To allow these patients more freedom in determining their future, six states have legalized physician-assisted dying.

But even that path has hurdles, as the price of the conventional life-ending medication Seconal has ballooned to upwards of $3,000 under pharmaceutical giants prowling for profit. The steep price has driven doctors, mortally-ill patients and health care experts to wrestle with financial inequality at the final moments of life.

“It’s an example of inequities in our health care system. People have a right to do something but they don’t have a right to get it at a reasonable price,” says Dr. Stuart Youngner, a professor of bioethics and psychiatry at Case Western Reserve University.

Washington state legalized physician-assisted dying in 2008, and the price of Seconal has gradually risen from a few hundred dollars to over $3,000, according to a study published in JAMA Oncology. The highest increase was in 2015, when the Canadian pharmaceutical company Valeant Pharmaceuticals acquired the drug and doubled its price from $1,500 to $3,000.

The increase occurred a month after aid-in-dying legislation was introduced in California, potentially expanding Seconal’s market. Valeant Pharmaceuticals stated that the price was determined by multiple factors including generic alternatives and development costs. (Although the drug has been available since the 1930s.)

This certainly isn’t the first time Valeant has garnered criticism. State and federal agencies have launched multiple investigations into the company’s troubling prices and practices. And Valeant isn’t the only culprit. In December, the Senate investigated high drug prices, and the constant need for pharmaceutical companies to repay investors created a “business model that harms patients, taxpayers and the U.S. health care system,” according to their report.

“What does it mean with yet another instance of pharmaceutical companies seeming to increase the cost of medicines to artificially drive up prices?” asks bioethicist Dr. Robert Arnold, director of the Palliative and Supportive Institute at the University of Pittsburgh Medical Center. “It seems to me that that question isn’t unique to this issue. That question has happened an enormous number of times over the last couple years.”

“As a society,” he continues, “how do we deal with these issues of man-made shortages of medicine?”

A team of doctors in the Northwest grappled with just that question. Doctors at End of Life Washington counsel terminally ill patients and their families about end-of-life options. Some clients couldn’t afford Seconal. Others couldn’t fathom shelling out thousands of dollars to simply die a peaceful death. So seven doctors got together to create a less expensive life-ending medication.

“We all felt responsible for giving patients another option that would be affordable,” says Dr. Therese Law, the medical director of End of Life Choices Washington and a retired physician of 35 years who helped develop the medication.

The team participated in meetings and conference calls over the next few months. They discussed various compounds and dosages that could be used for the lethal mixture. The medication would be prescribed by a physician and obtained at a compounding pharmacy, which dispenses medications whose components and dosages are tailored to the individual patient.

“I think it was a very careful deliberation between pharmacists and prescribing physicians and cardiologists. We talked about various different medications and their effects and their side effects,” Law says.

The doctors had to continuously assess the medication. A few family members reported that the first combination led to a painful burning sensation in the person’s throat. The second version made some deaths take too long. The doctors are currently gathering data to research a third protocol.

“Their intent I do not challenge, nor do I challenge the patient’s desire to have this done. I’m wondering about if their execution of their goals might not be optimal … Is there a better way of approaching the problem?” says Dr. Maurie Markman, the president of Medicine and Science at Cancer Treatment Centers of America.

Part of the problem is that a perfect parallel does not exist. Canada legalized euthanasia last year, in which a doctor uses a lethal injection to hasten a patient’s death. In Europe, drugs called barbiturates are often used, but Americans can’t purchase them, as the European Union applied sanctions to limit barbiturate exports to the United States in opposition to its death penalty.

Should physicians devote their time to helping patients circumvent pharmaceutical greed? This doesn’t seem like the way doctors should spend their time or the way patients should get their healthcare. And Seconal represents a particularly poignant example, since terminally ill patients have often spent an enormous amount of money on medication already.

“In a sense it’s ironic, because a lot of the critics of physician-assisted suicide are worried that poor people will be taken advantage of,” Younger says. “It looks like in this case poor people will be discriminated out of it, not discriminated into it.”

My grandmother is stuck in a manmade medical purgatory, a state she never would have chosen for herself. To some it represents progress, but to me, it’s hard to watch. As society continues to propel medicine forward, we need to allow people choice in how they die. And the right to a dignified death should extend to everyone — regardless of how much money is in their wallet.

Complete Article HERE!

Seattle chaplain: Far too few know about Washington’s Death with Dignity Act, end of life options

Washington’s Death with Dignity act was passed in 2008.

By Josh Kerns

[I]t’s a subject few are willing to talk about: our own deaths.

And even though Washington is one of just six states where doctor-assisted death is legal, very few utilize it, and many know nothing about their options. But a dedicated group of volunteers is working tirelessly to change that.

Retired Seattle chaplain Trudy James says death has always been a part of her life.

“My first baby died at 4 days old, my father took his own life when I was 35, and I became a hospital chaplain when I was 47,” she said.

As a chaplain, she was at the forefront of the AIDS epidemic, working daily with people young and old facing death. She helped build a community of volunteers to support them.

“They were suffering and they knew that they were going to die,” James said. “And what we learned is when they had people around them and things to look forward to and people to talk to, they lived longer and they died better deaths.”

That led James to create the Heartwork end-of-life planning groups.

She began offering workshops and training volunteers in congregations, senior centers, private homes and elsewhere to help raise awareness about the options, and to help people take control of their own end-of-life decisions.

Death with Dignity

Voters approved Washington’s Death with Dignity Act in 2008. It allows terminally ill adults with six months or less left to live to request lethal doses of medication from a doctor, refuse life-saving medical treatment like resuscitation, and to stopping eating and drinking to hasten death.

There are a number of steps involved in this, such as exams and repeat oral and written requests to a doctor who chooses to prescribe the medication.

“A lot of people don’t even know we have this new law in Washington. And if they do know or if they voted for it, they have no idea how to access it or what it would mean or what it offers them,” she said.

There are plenty of people and organizations opposed to doctor-assisted death.

Many religious groups and right-to-life advocates argue doctor-assisted death interferes with God’s will. Doctors in some religious-based hospitals are prohibited by their employers from discussing the law.

After seeing scores of people die extremely painful deaths over the years, James couldn’t disagree more.

“I say dying in intensive care with machines hooked up to all of you and not being able to speak to your loved ones isn’t really a natural death,” she said. “It’s prolonging dying, but it’s not prolonging living.”

This is not suicide

One thing James and other end-of-life advocates underscore is that they are not promoting or encouraging death – just awareness of the options. Namely, that those suffering from painful, degenerative conditions — ranging from cancer to ALS — can hasten their death.

And these advocates emphasize that this is not doctor-assisted suicide. They argue the word suicide should only describe those physically well enough who would otherwise continue living.

“These are people who are going to die anyway and they’re just reducing suffering for themselves and their family,” she said. “That seems to me what God would want.”

James’ experiences with her ministry and the workshops inspired her to produce a short film she could show at senior centers, hospices and elsewhere.

What started as a 12-minute, simple short is now a full-fledged 30-minute documentary called “Speaking of Dying.” It’s basically people speaking from the heart about their own experiences with illness and death.

James says even though people don’t want to think or talk about death, when they can learn their options and plan for it, it can bring incredible peace of mind. And she says it’s something we should all be thinking about and planning for with our families, friends or doctors sooner rather than later.

“There’s nothing that says you’re not going to die until you’re 75 or 80,” James said. “Many people die young and it’s so comforting if they’ve done some work with them and talk with them and tell them what they want.”

James will be hosting a special screening of the “Speaking of Dying” on Saturday, April 29 at Seattle Baptist Church. The goal is to celebrate the film’s second anniversary and raise money to help show and distribute it to more broadly.

“There is always grief when someone you love dies,” she said. “But I say it’s better when they’ve had a peaceful ending.”

Complete Article HERE!

It’s not death that he’s afraid of but dying

Noel Conway, who has motor neurone disease, and his wife Carol want to change the law on assisted dying

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[T]he daffodils are in full bloom outside the cozy Shropshire cottage where Noel Conway prepares for his day in court, spring sunshine streaming through the window.

Typing has become too difficult for the 67-year-old. He can just about manage with a specially-adapted mouse, but has invested in the eye-gaze technology made famous by Stephen Hawking. He is finding it hard going. “I’m so slow. I don’t know how he ever wrote a book using it. But I am preparing for what I know lies ahead,” he says.

This highly articulate, retired adult education lecturer knows it is only a matter of time before he loses his powers of speech. Like Professor Hawking, Mr Conway has motor neurone disease. Unlike the physicist, he won’t live with the illness for years to come. This will probably be his last spring.

It is not death that alarms him but the process of dying. The suffering in the last months and weeks of life for those with MND is notorious. Bit by bit, neurons stop communicating with one another, resulting in difficulty moving, speaking, swallowing and eventually breathing. Mr Conway wants to have the right to say when enough is enough and die in some degree of comfort.

He cannot take his own life — he has not got the strength, and under the current law no one can help him die without risking prosecution and imprisonment. Which is why tomorrow Mr Conway and his wife Carol will take a judicial review to the High Court. Despite his poor health, he will be there in person.

Diagnosed in November 2014, his illness has progressed rapidly, particularly in the past few months. Having lost the power and feeling in his arms in the first stages of the illness, in November the former mountaineer, skier and cyclist caught an ordinary winter bug. “That finished off what strength I had left in my legs,” he said. He now relies on a hoist and uses a power wheelchair.

He can no longer clean his teeth or scratch his head. He gets stuck on his back in bed at night and has to call out for his wife to help him. He wears a ventilator much of the time.

On the plus side, he is still able to talk and does so with intelligence and passion. And he can still eat and drink with help, and the use of a one-way valve straw. “I draw the line at wine, though. I’m not drinking that out of a tumbler and straw.” He refused to have a tube fitted into his stomach for feeding. “The day I cannot eat and drink . . . well I don’t want to be here anymore.”

Noel Conway in 2008. He thinks it is wrong that the wealthy can afford to use Dignitas while others must continue to suffer

However, it is the thought of not being able to move, an inevitability, being trapped in a totally paralysed body, that he finds most harrowing. “I know that when I’m absolutely rigid and immobile, can’t speak or breathe, I want to be able to say right, it’s time to go,” he says. “I do not want to be trapped in a tiny cell inside a pyramid with the sides closing in on me.”

That fear prompted Mr Conway to join Dignitas, the Swiss clinic which offers medically-assisted dying to the ill and disabled. More than 40 Britons end their lives there each year and no one has ever been prosecuted for helping a loved one make the journey there. It is, in effect, a legal form of assisted suicide for the wealthy.

“It was a relief to join. I felt I needed to take control,” he said.

However, he feels there is something fundamentally wrong if the wealthy have an option that no one else has. His entire life he has tried to fight for those who have had no voice. He was a councillor in Blackburn in his early 20s and during his career championed the cause of those who missed out on education first time round to have another chance.

“Only a small number of people can afford Dignitas,” he says. “The fees are about £7,500 and you have to get there on top of that. So it is prohibitively expensive for many. It is inequitable.” It is this passion for fairness that has led him to take his case to court.

Supported by the campaign group Dignity in Dying and having raised £30,000 through crowdfunding, his legal team will ask the court to declare that the blanket ban on assisted dying under the Suicide Act 1961 is contrary to his human rights. They will argue that as a terminally ill, mentally competent adult, his right to a private life includes the right to make decisions on the end of his life.

He has a good case.

The most recent assisted-dying case was taken by Tony Nicklinson, who suffered locked-in syndrome. Although the Supreme Court finally rejected his case, judges were sympathetic and urged MPs to consider changing the law. Mr Conway will argue that they have not done this in any serious way despite polls suggesting overwhelming public support for change. MPs held a brief Friday afternoon debate on a private members’ bill on the issue in September 2015, then voted it down.

“I must say, I am appalled at the way a considerable number of MPs did not even engage with the issue, which is a very serious one for our time,” Mr Conway says.

Complete Article HERE!

I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!

Nursing my dying mother made me determined that everyone should have a ‘good’ death

By Adrienne Betteley

[W]hen my mum Joan died of oesophageal cancer in 2014, she was in the place she wanted to spend her last days – the spare bedroom at home – with me and my dad, Cliff, by her side.

I’d spent the last week in a camp bed next to Mum, wiping her lips and mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said “Adrienne, I have to thank you for being the most wonderful daughter.” Afterwards, our district nurse made my dad a whisky and me a cup of tea as we said our final goodbyes.

Not without serious difficulty

Mum had a ‘good death’, but not without serious difficulties at times. I can’t help thinking it was my background as a district nurse that allowed her to die at home with her family. My experience meant I was listened to, and I pushed for her to get what she needed, such as acupuncture at the local hospice to relieve her crippling pain from arthritis. I knew what to expect and what conversations to have. We had early discussions about how she wanted to die (at home, not in hospital) and where (not next to Dad in their bed), which we call Advance Care Planning in the medical profession. At Macmillan, we believe that more needs to be done to ensure people are planning for their deaths, so their wishes – such as where they die – can be met.

Sadly, a death like my mum’s is denied to so many in this country. And I believe it would have been impossible for her too, had she not happened to have a nurse for a daughter. I had to fight to get her the care she desperately needed. Services are depleted, especially out of hours. You can’t choose when advanced cancer will cause you pain, but getting pain-relief at night or on weekends can be impossible. In her final days, there was no availability for a night sitter. Thankfully, I could be by her bedside, but had I not been, I’m convinced she would have died in hospital against her wishes.

Findings published in the British Medical Journal last week help explain why some people aren’t getting enough support when they are dying. Care for dying people varies hugely across different regions, both in how much money services are allocated and what care they offer. Figures suggested that, in most parts of the country, there are no specialist pain control teams, and, where they are in place, most operate only in normal working hours with no cover overnight. Until you’ve had a loved one in pain, with no way of providing them relief, it’s hard to appreciate the urgency of this situation.

Having a choice

Pain relief is the very least we should expect at the end of our lives. But it’s also important that, where possible, patients can die in a place of their choosing. We know that most people with advanced cancer would prefer to die at home, but not many of them actually do. Without round-the-clock community nursing, it’s hard to see how this will improve.

My days as a district nurse taught me that getting things right for people at the end of their life takes time. Decisions made about treatment affect how that person will spend their last months, weeks, hours, in this world. But time is something our overstretched workforce doesn’t have. Last month came another heart-breaking revelation – that over two thirds of nurses ‘don’t have time’ to care for dying patients. Is this really what we’ve come to? Something has to change.

Painless death must be priority

I know what a good death looks like, and that it is achievable. But to give everyone a chance to die without pain, and in the place they want to, care for dying people needs to be a priority across the country. As the NHS and local councils set out their plans to transform healthcare, it’s vitally important that they take into account how they will care for people at the end of their lives. At Macmillan, we’ll be monitoring these plans closely to make sure they do.

Those last few weeks with my mum were exhausting, but they were special and irreplaceable. Helping her in her final days with the people she loved, in the house she knew, was the most meaningful thing I’ve ever done. Caring how people die isn’t just about death, but about the value we place on life.

Complete Article HERE!

The euthanasia debate is polarised, yet shared concerns unite all sides

People with opposing views on legalising the right to die agree palliative care is inadequate. We need to build on this common ground

Research funded by the Joseph Rowntree Foundation found that people were united in compassion for those with terminal illnesses.

By

[B]rigit Forsyth, the actor best know as Thelma in Whatever Happened to the Likely Lads? is currently playing a terminally ill musician on stage. Her character in Killing Time says she’s a “prime candidate for a one-way trip to Switzerland”. Forsyth has disclosed that her GP grandfather helped dying patients end their lives and that she is in favour of euthanasia. Her comments are the latest in a long line of opinions on legalised assisted dying reported in the press, which has a habit of oversimplifying the complex arguments for and against. And this seems to be damaging our ability to hold meaningful public debate on the subject.

With this in mind, a study funded by the Joseph Rowntree Foundation sought the views of people with strongly opposed opinions on the matter. Participants in both groups included people with palliative care backgrounds, older and disabled people, those from organisations concerned with care and support and individuals from academic, social work and policy backgrounds.

What emerged is a surprising amount of common ground. People with apparently polarised views on legalising the right to die often shared areas of interest and concern. It is these areas that should form the basis for further public discussion, argues the report, Assisted Dying: Developing the Debate, which is published on Wednesday by the Shaping Our Lives network of user-led groups, service users and disabled people.

Shared concerns included clear agreement that palliative care for terminally ill people is inadequate. Whether for or against assisted dying, participants showed a willingness to discuss quality of life for terminally ill people, the value placed on good-quality care, and how to invest in and provide access to this care in the face of economic inequality.

Participants recognised that the debate on legalising assisted dying was taking place in an unequal society: we often place lower social value on older, sick, and disabled people. The research identified a willingness to discuss prevailing societal values, including the concept of “being a burden” on society; the value society placed on social care and support work; and our social attitudes towards death and dying. “How should assisted dying be funded?”, “Where should it be performed?”, and “What methods and means of self-administering a fatal dose should be used?”, were just some of the common questions raised.

Despite disagreement about the extent to which detailed processes and safeguards should be included in assisted dying legislation, participants from across the spectrum of opinion generally agreed that the “how” questions were not being discussed in enough depth.

Areas of shared understanding also emerged when respondents discussed ethical and existential ideas around death and dying, including the psychological aspects of pain and suffering, both for individuals and their loved ones. “All participants had a wish to find the best way forward with compassion for people who are terminally ill, regardless of being for or against legalising assisted dying,” the report concludes.

The study shows that the issues are far more complex than much of the public debate has so far allowed. Death and dying is a core issue for human beings, and public debate must reflect this. It is time to embrace the personal, social, policy and ethical issues that participants have highlighted.

Back in the theatre, Forsyth’s dying musician is visited by a young carer (Zoe Mills) who feels it is her duty to help put older people out of their misery. According to the reviews, she comes to realise that life and death is more nuanced.

Complete Article HERE!

Northwest doctors rethink aid-in-dying drugs to avoid prolonged deaths

Doctors seeking to help terminally ill patients under state Death with Dignity laws have come up with a new drug mixture. It’s the latest alternative to one drug that suddenly got too expensive and a mixture that took too many hours to work.

Valium, also known by the name diazepam, is one drug used in a mixture of aid-in-dying medications.

[T]wo years after an abrupt price hike for a lethal drug used by terminally ill patients to end their lives, doctors in the Northwest are once again rethinking aid-in-dying medications — this time because they’re taking too long to work.

The concerned physicians say they’ve come up with yet another alternative to Seconal, the powerful sedative that was the drug of choice under Death with Dignity laws until prices charged by a Canadian company doubled to more than $3,000 per dose.

It’s the third drug mixture recommended by the doctors whose medication protocols help guide decisions for prescribers in the six U.S. states where aid-in-dying is allowed.

The first Seconal alternative turned out to be too harsh, burning patients’ mouths and throats, causing some to scream in pain. The second drug mix, used 67 times, has led to deaths that stretched out hours in some patients — and up to 31 hours in one case.

“[Twenty percent] of the cases were three hours or more before death, which we think is too long,” said Robert Wood, a retired HIV/AIDS researcher who volunteers with the advocacy group End of Life Washington, in an email. “The longest was 31 hours, the next longest 29 hours, the third longest 16 hours and some eight hours in length.”

Patients and families are told to expect sleep within 10 minutes and death within four hours. When it takes far longer, family members get worried, even distressed, said Dr. Carol Parrot, a retired anesthesiologist who has prescribed drugs for dozens of aid-in-dying patients in Washington.

The doctors say this can be addressed with larger doses of the three drugs they have been using — diazepam, often used to treat anxiety; digoxin, used to treat heart issues; and morphine, a narcotic pain reliever — plus another heart medication, propranolol, in a four-drug cocktail aimed at quickly inducing death, Wood said.

Parrot and Wood are part of a seven-member group of doctors in the Northwest who came up with the three-drug protocol after Valeant Pharmaceuticals Inc. acquired the rights to secobarbital, known as Seconal, in 2015 and raised the price sharply.

“We wanted the new drug regime to be safe, reliable and effective — and cost $500 or less,” said Parrot.

How long until death?

Since 1997, when Oregon’s Death with Dignity law became the first in the nation, doctors had relied on fast-acting, relatively inexpensive barbiturates — either secobarbital or pentobarbital — for patients with terminal diagnoses who sought aid in dying in Oregon, Washington, California, Colorado, Montana and Vermont. The practice also has been approved in Washington, D.C., but is being reviewed by Congress.

Pentobarbital became unavailable after drugmakers blocked its use in U.S. death-penalty executions.

Concerns about the overly long deaths surfaced last summer, Parrot said. Nearly all of the problems occurred in patients already taking high doses of opiates.

“We run into patients who are so tolerant or dependent on narcotics that even the astronomically high doses of oral narcotics in our prescription do not stop them from breathing,” she said.

If patients have diseases that slow or alter normal organ function, it can affect the speed and amount of drugs absorbed in the small intestine, metabolized in the liver and sent to the rest of the body. Very large patients, too, may require larger doses.

Deaths aren’t required to be supervised, and no doctor was present with the unidentified patient who took 31 hours to die, so doctors would only be speculating about the reason, Parrot said.

Not all patients — or doctors — experienced overly long deaths with the previous drug mixture. Dr. Lonny Shavelson, a Berkeley, California, physician who has supervised two dozen aid-in-dying deaths under California’s new law, said it worked fine.

“My personal experience is, I haven’t had long deaths with it,” Shavelson said.

And not all doctors think long deaths are a problem. In Oregon, even with fast-acting barbiturates, time to death has ranged from one minute to 104 hours during the 20 years the law has been in effect, state records show.

“I’ve heard stories where it took quite a number of hours to die, and it was fine,” said Dr. David Grube, an Oregon-based medical director for the advocacy group Compassion & Choices.

Scrabble, then lethal drugs in scotch

Scott and Amy Kreiter, of Wenatchee, didn’t know what to expect when Scott’s mother, Patricia Hansen, 69, decided to take the lethal drugs on Dec. 26, 2016. Hansen, a lively woman who once ran a gourmet ice-cream business, had endured frequent hospitalizations for end-stage kidney failure, congestive heart failure and other ailments.

“She said, ‘I want to listen to Willie Nelson, I want to play a game of Scrabble, I want to drink a Rob Roy or two, and then I want to be done,’ ” said Scott Kreiter, 47.

Hansen proceeded to “kick our butts” at Scrabble, her son said — including fulfilling a goal of getting a triple-word score with a dirty word. Then she mixed the drugs with scotch and drank the solution.

“She didn’t complain. She just took it,” her son recalled. “She said, ‘You thought I’d chicken out, didn’t you?’ ”

Within two minutes of downing the mixture, Hansen was asleep. Within 20 minutes, her breathing had stopped.

“We thought it would take one to two hours,” Amy Kreiter said. “It if had gone on for hours, we would have thought we did it wrong.”

Critics of aid-in-dying say growing reports of overly long deaths underscore their objections. Dr. David Stevens, CEO of Christian Medical & Dental Associations, which has tried to halt or reverse laws, said coming up with new drug protocols could eventually be a step toward Holland’s practice of allowing euthanasia by lethal injection “so the patient could be killed ‘humanely.’ ”

“We are heading down that same path,” Stevens said in an email.

But Parrot and other frequent prescribers of aid-in-dying drugs say they are looking for the best way to honor the wishes of patients in states where the practice is allowed. Doctors recently began using the newest drug mixture and will gather data about its effectiveness.

“We’re not experimenting,” Parrot said. “We are working with available drugs to provide dying patients a comfortable, peaceful death that is reliable and safe for them and comforting for their families as well.”

Complete Article HERE!