08/15/17

How to Find Meaning in the Face of Death

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By Emily Esfahani Smith

The psychiatrist William Breitbart lives at the edge of life and death. As chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center in New York, Breitbart specializes in end-of-life care for terminally ill cancer patients. For many of his patients, the most pressing question isn’t when they’ll die or how painful death will be. Rather, it’s what makes life meaningful. They are in search of a meaning that cannot be destroyed by death.

Breitbart has spent the better part of his career trying to answer that question. His ground-breaking research shows that while the specter of death often leads people to conclude that their lives are meaningless, it can also be a catalyst for them to work out, as they never have before, the meaning of their lives.

When people believe their lives are meaningful, according to psychologists, it’s because three conditions have been satisfied: They feel their existence is valued by others; they are driven by a sense of purpose, or important life goals; and they understand their lives as coherent and integrated. Psychologists and philosophers say that the path to meaning lies in connecting and contributing to something that is bigger than the self, like family, country, or God.

Breitbart’s interest in meaning took root in his childhood. Born in 1951, Breitbart grew up on the Lower East Side of Manhattan. His parents, Jews from eastern Poland, narrowly avoided Hitler’s death camps. When they moved to America, they carried their memories of the war years with them. Breitbart’s childhood was steeped in that tragic past. Every morning, his mother would ask him at the breakfast table, “Why am I here?” Why, she wondered, did she live when so many others had died?

“I grew up with a sense of responsibility to justify my parents’ survival and to create something in the world that would be significant enough to make my life worthwhile. It’s no coincidence,” he laughed, “that I ended up at Sloan Kettering.”

Breitbart began working at the hospital in 1984 during the height of the AIDS epidemic. Young men his age were dying all around him. As he tended to them, “They were constantly asking me to help them die,” he said. He was also working with terminal cancer patients. “When I walked in the room, they would say, ‘I only have three months to live. If that’s all I have, I see no value or purpose to living.’” They told him, “If you want to help me, kill me.”

If death means non-existence, Breitbart’s patients reasoned, then what meaning could life possibly have? And if life has no meaning, there’s no point of suffering through cancer.

By the ’90s, physician-assisted suicide was a hot topic in Breitbart’s circles and beyond. The doctor Jack Kevorkian had helped his first patient end her life in 1990. As the United States debated the ethics of assisted suicide, other countries were taking steps toward normalizing the practice. In 2000, the Netherlands became the first nation to make physician-assisted suicide legal. Today the practice is legal in the United States in California, Vermont, Montana, Washington, and Oregon.

As Breitbart heard more stories of assisted suicide, he began to wonder what specifically was driving the terminally ill to give up on life. At the time, he was doing research studies on pain and fatigue at the end of life, so he tacked onto those studies some questions that asked his subjects whether they felt a desire for a hastened death. What he discovered surprised him.

They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life.

The assumption had been that the ill chose to end their lives because they were in terrible pain. But Breitbart and his colleagues found that wasn’t always the case. Instead, those who desired a hastened death reported feelings of meaninglessness, depression, and hopelessness. When Breitbart asked patients why they wanted a prescription for assisted suicide, many said it was because they had lost meaning in life. Unlike clinical depression, which has a specific set of diagnosable symptoms, meaninglessness was more of an “existential concern,” Breitbart said—a belief that one’s life has little value or purpose and is, therefore, not worth living.

Breitbart knew he could treat depression—there were medicines and well-developed psychotherapies for that—but he was stumped when it came to treating meaninglessness. Then, in 1995, he began to see a way forward. He was invited to join the Project on Death in America, which aimed to improve the experience of dying. Breitbart and his colleagues on the project—including philosophers, a monk, and other physicians—had long conversations about death and the meaning of life, “peppered with references to people like Nietzsche and Kierkegaard and Schopenhauer,” Breitbart said. “What I suddenly discovered,” he explained, was that “the search for meaning, the need to create meaning, the ability to experience meaning was a basic motivating force of human behavior. We were not taught this stuff at medical school!”

Breitbart became convinced that if he could help patients build meaning, he could decrease their suicidal thoughts and make their lives worth living even to the very end.

He developed an eight-session group therapy program where six to eight cancer patients come together in a counseling workshop. Each session, in one way or another, helps build meaning. In the first session, for example, the patients are asked to reflect on “one or two experiences or moments when life has felt particularly meaningful to you.” In the second session, patients respond to the question “Who am I?” to tap into the identities that give them the most meaning. One woman responded saying, “I’m somebody who can be very private … [and] have been working on accepting love and affection and other gifts from other people.” In subsequent sessions, they share their life story with the group and think about the role that love, beauty, and humor played in their lives.

In the final session, the patients reflect on the part of them that will go on living even after they are dead—their legacy. That could be their soul, or it could be something they helped to create that will continue to exist—their children, a work of art, or an organization. They present a “legacy project” to the group, generally something they do or create that represents how they want to be remembered. One man brought in a woodcut of a heart sculpted into a Celtic Trinity. “This is what I will teach my children,” he said, “that there is eternal love, and that I will be there for them, far beyond my passing.”

Breitbart performed three randomized, controlled experiments on the meaning-centered psychotherapy. When he analyzed the results with his colleagues, Breitbart saw the therapy had been transformative. By the end of the eight sessions, the patients’ attitudes toward life and death had changed. They were less hopeless and anxious about the prospect of death than they were before they began the program. They no longer wanted to die. Their spiritual wellbeing improved. They reported a higher quality of life. And, of course, they found life to be more meaningful. These effects not only persisted over time—they actually got stronger. When Breitbart followed up with one group of patients two months later, he found that their reports of meaning and spiritual wellbeing had increased, while their feelings of anxiety, hopelessness, and desire for death had decreased.

The time between diagnosis and death, Breitbart has found, presents an opportunity for “extraordinary growth.” One woman, for example, was initially devastated by her diagnosis of colon cancer—but after enrolling in the therapy program, she realized, “I didn’t have to work so hard to find the meaning of life. It was being handed to me everywhere I looked.” And that realization ultimately brought her—and Breitbart’s other patients—some measure of peace and consolation as they faced life’s final challenge.

Complete Article HERE!

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08/7/17

Should I Help My Patients Die?

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I WAS leafing through a patient’s chart last year when a colleague tapped me on the shoulder. “I have a patient who is asking about the End of Life Option Act,” he said in a low voice. “Can we even do that here?”

I practice both critical and palliative care medicine at a public hospital in Oakland. In June 2016, our state became the fourth in the nation to allow medical aid in dying for patients suffering from terminal illness. Oregon was the pioneer 20 years ago. Washington and Vermont followed suit more recently. (Colorado voters passed a similar law in November.) Now, five months after the law took effect here in California, I was facing my first request for assistance to shorten the life of a patient.

That week, I was the attending physician on the palliative care service. Since palliative care medicine focuses on the treatment of all forms of suffering in serious illness, my colleague assumed that I would know what to do with this request. I didn’t.

I could see my own discomfort mirrored in his face. “Can you help us with it?” he asked me. “Of course,” I said. Then I felt my stomach lurch.

California’s law permits physicians to prescribe a lethal cocktail to patients who request it and meet certain criteria: They must be adults expected to die within six months who are able to self-administer the drug and retain the mental capacity to make a decision like this.
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But that is where the law leaves off. The details of patient selection and protocol, even the composition of the lethal compound, are left to the individual doctor or hospital policy. Our hospital, like many others at that time, was still in the early stages of creating a policy and procedure. To me and many of my colleagues in California, it felt as if the law had passed so quickly that we weren’t fully prepared to deal with it.

That aside, the idea of hastening death is uncomfortable for many doctors. In its original version, the Hippocratic oath states, “I will not administer poison to anyone when asked to do so, nor suggest such a course.” The American Medical Association, the nation’s largest association of doctors, has been formally opposed to the practice for 23 years. Its ethical and judicial council has recently begun to study the issue further.

At a dinner shortly after the law went into effect, I polled 10 palliative care colleagues on their impressions of it. There was a chorus of groans. Like me, they were being asked about it with increasing frequency, yet hadn’t found an answer that felt right. It wasn’t necessarily that we disapproved, but we didn’t want to automatically become the go-to people on this very complex issue, either.

This first patient of mine was not a simple case. When I walked into his room, he glared at me. “Are you here to help me with this aid-in-dying thing?” he asked. He was in his early 60s, thin and tired, but in no obvious distress. From my read of his chart, he met all criteria to qualify. Terminal illness, decision-making capacity, ability to self-administer the medications. And he had made the requisite first request for the drugs two weeks earlier, as procedure dictates.

When I asked why he wanted to end his life early, he shrugged. “I’m just sick of living.” I asked about any symptoms that might lie behind his request: unrelenting pain, nausea, shortness of breath. He denied them all. In palliative care, we are taught that suffering can take many forms besides the physical. I probed further and the floodgates opened.

He felt abandoned by his sister. She cared only about his Social Security payments, he said, and had gone AWOL now that the checks were being mailed to her house. Their love-hate relationship spanned decades, and they were now on the outs. His despair had given way to rage.

“Let’s just end this,” he said. “I’m fed up with my lousy life.” He really didn’t care, he added, that his sister opposed his decision.

His request appeared to stem from a deep family wound, not his terminal illness. I felt he wanted to punish his sister, and he had found a way to do it.

At our second meeting, with more trust established, he issued a sob, almost a keening. He felt terrified and powerless, he said. He didn’t want to live this way anymore.

I understood. I could imagine my own distress in his condition — being shuttled like a bag of bones between the nursing home and the hospital. It was his legal right to request this intervention from me. But given how uncomfortable I was feeling, was it my right to say no?

In the end, he gave me an out. He agreed to a trial of antidepressants. “I’ll give you four weeks,” he said. He would follow up with his primary care doctor. I couldn’t help feeling relieved.

The patient died in a nursing home, of natural causes, three months later. And I haven’t had another request since. But the case left me worried. What if he had insisted on going through with it?

I’ll admit it: I want this option available to me and my family. I have seen much suffering around death. In my experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’s disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.

But still. I didn’t feel comfortable with the idea of helping to shorten the life of a patient because of depression and resentment. In truth, I’m not sure I am comfortable with helping to intentionally hasten anyone’s death for any reason. Does that make me a hypocrite?

I realized it was past time to sort out my thinking and turned to the de facto specialist in our area on this issue for counsel. Dr. Lonny Shavelson, an emergency medicine and primary care physician in Northern California, has been grappling with the subject for many years.

Given his interest in the topic, Dr. Shavelson felt a personal obligation to ensure that this new practice would be carried out responsibly after the law was passed. He founded Bay Area End of Life Options, a consulting group that educates physicians, advocates on patients’ behalf and prescribes the lethal concoction for some patients who meet the criteria for participation.

He has devised a process for his patients that not only adheres to the letter of the law, but goes far beyond it. His patient intake procedures are time-consuming and include a thorough history and physical, extensive home visits, a review of medical records and discussions with the patients’ doctors. He assesses the medical illness, the patient’s mental and emotional state and family dynamics.

He does not offer the medications to most of the patients who request them, sometimes because he deems them more than six months away from death or because he is worried that they have been coerced or because he believes that severe depression is interfering with their judgment. Since starting his practice, he has been approached by 398 patients. He has accepted 79 of those into his program and overseen ingestion and death for 48.

Dr. Shavelson’s careful observations have made him something of a bedside pharmacologist. In his experience, both the medications used and their dosages should be tailored to individual patients. While all patients enter a coma within minutes of ingesting the lethal cocktail, some deaths take longer, which can be distressing for the family and everyone else involved. One of his patients, a serious athlete, experienced a protracted death that Dr. Shavelson attributes to the patient’s high cardiac function. After that experience, Dr. Shavelson began to obtain an athletic history on every patient, and to add stronger medications if indicated.

In another patient, a mesh stent had been deployed to keep his intestines from collapsing. This stent prevented absorption in key areas, slowing the effect of the drugs and prolonging his death. Dr. Shavelson now routinely asks about such stents, something that a doctor less experienced in this process might miss.

Dr. Shavelson strives to mitigate all symptoms and suffering before agreeing to assist any patient in dying. He recounted many cases where patients no longer requested the medications once their quality of life improved. He counts these cases among his greatest successes. This demonstrates that his commitment is to the patient, not the principle.

When I asked Dr. Shavelson how he might have proceeded with my patient, he said he would have tried everything to relieve his distress without using the lethal medication. But if in the end the patient still wanted to proceed, he would have obliged, presuming his depression was not so severe as to impair his judgment. “I don’t have to agree with a patient’s reasoning or conclusions,” he said. “Those are hers to make, just as much as turning down chemotherapy or opting not to be intubated would be.”

I recently called colleagues at other hospitals to learn how they were handling this law. Like me, most of them hadn’t yet had much experience with it, but their involvement has mostly been positive. They described the few cases they had handled as “straightforward” — patients had carefully thought through the decision and had full family support. Most patients were enrolled in hospice care and supported throughout the ingestion process by trained personnel, almost always in their homes. My colleagues reported that they were free to opt out of the program if they were uncomfortable prescribing the medications. (Catholic health systems do not participate.)

Dr. Meredith Heller, director of inpatient palliative services at Kaiser Permanente San Francisco, said that while she understood my ambivalence, she herself felt significantly better about it than she had expected to. “Surprisingly, the vast majority of cases here have gone smoothly,” she told me.

A little over a year after the law went into effect, I am heartened by the positive responses I am hearing from my colleagues around the state. I am relieved that most cases seem straightforward. I am grateful that there are dedicated physicians like Dr. Shavelson willing to do this work. And I am reassured by the knowledge that patients in California now have the legal right to exercise this power when they feel there is no other path.

But I am also concerned. As our population continues to grow older and sicker and more people learn that this law exists, we will need a highly trained work force to steward patients through this process.

My patient deserved an evaluation by a physician like Dr. Shavelson, not someone like me, with no training in this area and ambivalence to boot. We need formal protocols, official procedures, outcome measurements, even a certificate of expertise issued by an oversight board. None of these are in place in any participating state, according to Dr. Shavelson. Yet all medical procedures require training. Why should one this weighty be an exception?

What about payment? Providers can bill for an office visit and the cost of the medication. But because there are no specific codes established for this procedure, reimbursement doesn’t come close to covering any effort to do this well. On top of that, many insurers won’t cover it, including federal programs like Medicare and the Veterans Health Administration.

And will this new “right” be available to everyone? Most communities won’t have a Dr. Shavelson, who offers steep discounts to low-income patients. I worry that public hospital patients like mine will not be able to afford this degree of care. These are inequities we must address.

THERE is another question I feel compelled to raise. Is medical aid in dying a reductive response to a highly complex problem? The over-mechanization of dying in America has created a public health crisis. People feel out of control around death. A life-ending concoction at the bedside can lend a sense of autonomy at a tremendously vulnerable time.

Yet medical aid in dying will help only a tiny fraction of the population. In 2016, just under four-tenths of 1 percent of everyone who died in Oregon used this option. Other approaches such as hospice and palliative care, proven to help a broad population of patients with life-limiting illness, are still underused, even stigmatized. The American Society of Clinical Oncology recommends that patients with advanced cancer receive concurrent palliative care beginning early in the course of disease. In my experience, far too few of these patients actually get it.

Unlike medical aid in dying, which will be used by a small proportion of the population, palliative interventions can improve the lives of many. My patient hadn’t been seen by a palliative care physician before he made his request. Although recommended, it isn’t required by law. And yet this input gave him another option.

Medical aid in dying is now the law in my home state, and I am glad for that. But our work is just beginning. We must continue to shape our policies and protocols to account for the nuanced social, legal and ethical questions that will continue to arise. We must identify the clinicians who are best qualified and most willing to do this work and then train them appropriately, not ad hoc. And we must remember that this is just one tool in the toolbox of caring for the dying — a tool of last resort.

Complete Article HERE!

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07/20/17

A personal look at assisted dying

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Well-known Salmon Arm resident uses new legislation to end life

Sally Scales, who ended her life under the new Medical Assistance in Dying (MAiD) law, holds a photo of herself as a nurse in earlier years.

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“Hello. This is Sally Scales. S-c-a-l-e-s. I’m in Salmon Arm and I am preparing to die tomorrow,” said the message on the voice mail.

The message was left overnight Monday, July 3 at the Salmon Arm Observer office.

Sally was one of the more than 400 British Columbians to use the Medical Assistance in Dying (MAiD) service since it became legal in Canada in June of 2016.

In her voice message, Sally said she was being blocked from using MAiD by her landlord because some tenants at Arbor Lodge seniors’ residence did not want it to happen there.

Her son Peter Scales telephoned the newspaper July 4 to explain his mother had been moved to Bastion Place care facility where the assisted dying would go ahead.

She died at 11:30 that morning, as scheduled.

Peter says his mother had been in favour of medical assistance in dying since 1993 when Canadian Sue Rodriguez, who was suffering from ALS – amyotrophic lateral sclerosis, or Lou Gehrig’s disease, took her legal battle for assisted suicide to the Supreme Court of Canada. Although she lost her case in a 5-4 decision, she took her own life in 1994 with the help of an anonymous physician.

Peter says his mom remembered when Rodriguez asked, ‘Whose body is this?’ “She said it’s my own body and I hope the law can change in time for me.”

He recalls that later Sally read an article by an oncologist who said he hoped to die at 75. As former owner of the Lakeshore News, Sally then wrote a column stating she’d like to die at 85. Peter says people around town, including some from her church, told her quietly of similar wishes.

“She knew she wasn’t alone in wanting to die at her own time and of her own choosing.”

Sally underwent open heart surgery 11 years ago, receiving a new valve and a quadruple bypass. At that time, “she said again and again that she was never going through that again.”

Peter said Sally watched both her brothers die and her mother die of heart attacks.

“She knew how the story was going to end.”

The new valve Sally got worked well for about 10 years, but then it wore out “through no fault of the medical profession.”

Although she was offered another valve, she refused.

“She was done. She was 79. She didn’t make it to her 85th.”

Her heart was operating at a maximum 20 per cent efficiency, so she was short of breath, ‘puffing’ and anxious a lot, Peter says.

“It would scare her as maybe this was the time she was going to die.”

As is required under the MAiD process, Sally filled out the application. She was assessed by a Salmon Arm doctor on June 23, says Peter. Then on June 28, a Revelstoke doctor assessed her in her room at Arbor Lodge. Later they agreed on a date of 11 a.m. July 4 to carry out MAiD in her room.

Peter says Sally was anxious about the paperwork.

“There was less than she probably imagined, but it’s certainly paperwork that needs to be done correctly. I think the whole MAiD community, the MAiD providers, are being appropriately extra careful. They don’t want to be seen as killing people, but rather ending suffering.”

Did Sally ever have second thoughts?

“No, that wasn’t her style. She didn’t have second thoughts about anything,” he smiles.

Peter says her family was supportive of her decision.

The only glitch was being informed on July 3 that she wouldn’t be permitted to die at Arbor Lodge, he says.

“She was so happy she could die in her home – which was Arbor – surrounded by her things.”

Peter sees the lodge’s decision as hurtful.

“It seemed like when we wanted to deal with just our mom and our grief, we had this needless logistical detail that seemed really cruel.”

A note to Sally from operations manager Christina Lutz stated, in part: “Respectfully, I do have to take into consideration the general feeling this sets about the house and the opinions of the other residents who live under this roof. Therefore, we will not allow this event to happen here and respectfully request that you find an alternate site.”

Peter says his family scrambled on a long weekend to change locations and Bastion Place was very helpful in accommodating them.

Lutz reiterated in a telephone interview that some residents didn’t like the plan.

“Sally was saying what was happening and the other people who lived here were not comfortable with it.”

Lutz said the lodge was happy to have Sally as a resident for nearly a year.

“She brought spice and laughter and good feelings to our home and we wish the family well.”

Sally’s three children – Peter, Richard and Linda, and three of her five grandchildren were present during her final hours.

He says a nurse and physician attended, the nurse inserting an intravenous (IV) line.

“She arrived and made sure that Sally was comfy and well-positioned on the bed. She stayed with Sally until the doctor was ready,” Peter says.

Peter and his niece then watched the doctor prepare the syringes, labelling them to have them in the right order.

When it was time to administer the drugs, Peter and his niece left the doctor and Sally alone in the room.

“My mom was an old nurse; she said only professionals…, the rest of you be somewhere else.”

He said Sally’s family was allowed to go in after 12 minutes.

Peter describes MAiD as compassionate and efficient.

“I am so glad it was available. I think we were all glad… We had watched mom suffer for far too long.”

He said Sally thanked all the staff, but also asked them their life stories.

“She was true to form, right to the last minute.”

Peter is a historian by occupation and one of his greatest personal interests is religion and beliefs.

“I think it’s a measure of a compassionate society,” he says of assisted dying. “It’s a tough moral quandary for each person and for society. Is it more compassionate to extend life or to end suffering? In Sally’s case she saw it as ending suffering, not ending life.”

Peter says he’s grateful his family could prepare for Sally’s death and spend time with her, knowing what was coming. On the practical side, he says it allows families to put papers in order, to learn important details such as where the will is located.

Interior Health provides statistics for B.C.

From the start of MAiD in June 2016 to May 31 this year, the BC Coroner’s Service has recorded 66 MAiD deaths in Interior Health and 435 in B.C. IH states it cannot provide numbers of individual communities because of small numbers and privacy concerns.

IH also states there is no designated location where MAiD can occur. To date in IH, it’s been provided in individual homes, in hospitals, in residential care facilities and in hospice locations.

“There may be times, given this is still a relatively new service in IH and in B.C., where there are challenges in accommodating MAiD in a specific location…,” wrote an IH spokesperson in an email. “In those cases, we would work with patients and families to find the best possible alternate location.”

Trailblazing was not new to Sally Scales. Peter recounts a favourite memory of his mom’s nursing career.

When she came to Salmon Arm from St. Paul’s Hospital in Vancouver, he says, she discovered that all the nurses were wearing skirts and starched caps, rather than the more practical pants the St. Paul’s nurses were wearing.

Peter says the administrator shouted at her. He referred to the nurses as “his girls” and said he liked them in the uniforms.

“That gave my mom her first crusade in Salmon Arm,” Peter says. “She hated being called a girl, especially by a hospital administrator. I think she might have taken it from a doctor.”

In speaking publicly about medically assisted dying, Peter hopes his mother’s story will help reduce the stigma about death and MAiD.

“They’re separate but interwoven. A lot of people have trouble talking, not necessarily about MAiD, but about death. It’s part of life and it’s inevitable.”

Complete Article HERE!

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07/10/17

California assisted suicide patients are mostly white, well-educated

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Amanda Friedland, left, adjusts her friend Betsy Davis’ sash as Davis lies on a bed during her “Right To Die Party” surrounded by friends and family, in Ojai. At the end of the party, the 41-year-old woman diagnosed with ALS took a cocktail of lethal drugs and died, becoming one of the first California residents to take life-ending drugs under a new law that gave such an option to the terminally ill.

California residents choosing legal assisted suicide are disproportionately white and well-educated, new figures show.

Since California’s End of Life Option Act went into effect on June 9, 2016, hundreds of terminally ill patients have weighed the decision to end their own lives.

In 2016, 111 individuals died from ingesting aid-in-dying drugs, according to the California Department of Public Health. Ninety more had been prescribed drugs but ultimately did not take them, while a total of 258 individuals had begun the end-of-life option process.

Over half of the participants had cancer, with the most common type being lung cancer. Participants also suffered from neuromuscular diseases, heart disease and non-cancer lung respiratory disease, among others. At least 84 percent were already enrolled in hospice or palliative care.

Of the 111 individuals, 87 percent were at least 60 years old and 44 percent relied solely on Medicare for health insurance. Participants were also overwhelmingly – 89 percent – white. Additionally, 58 percent had attained an associate degree or higher level of education. Highly educated whites tend to have higher household incomes.

While these proportions are similar to those in Oregon’s 2016 Death with Dignity Act report, they do not reflect the demographics of California’s population. This is a sign of a deeper sociological and anthropological cause, said Lael Duncan, medical director of consulting services for the Coalition of Compassionate Care of California, an advocacy group for quality end-of-life care.

“I suspect it has to do with cultural and community norms and higher acceptance of this practice among that demographic,” Duncan said, though she hopes future research will shed more light on the situation.

To be eligible for participation, patients must have a terminal diagnosis, defined in the bill as an “incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, result in death in six months,” according to the bill. They must be determined to be able to make their own medical decisions and self-administer the aid-in-dying drug.

Patients begin the process by orally requesting an aid-in-dying drug two times at least 15 days apart and submitting a written request to their doctors. After discussing alternative options for care with their attending physician, they must also consult another doctor who can confirm the terminal diagnosis and their medical decision-making capacity.

Drugs used to aid in dying have changed throughout the years as more states have authorized the procedure, Duncan said. Common prescriptions are for mixes of various drugs, such as narcotics, benzodiazepines and cardiac medications, that can be taken orally. The exact combination and dosages of these drugs are adjusted to the patient, as individual tolerances and metabolisms vary. This multi-drug regimen costs several hundred dollars depending on the drugs used. Medicare does not cover these costs, so many patients must pay out-of-pocket for the procedure.

After ingesting the drugs, patients enter a deep comatose state in roughly 15 minutes and die about 30 minutes to a few hours later, Duncan said.

Physicians are not mandated to participate in aid-in-dying, and facilities can also opt out of the practice. But a list of participating doctors does not currently exist, according to the Coalition of Compassionate Care of California’s website. Only a small proportion of all physicians in California are willing to prescribe aid-in-dying drugs, complicating patient access to the procedure, Duncan said.

“The first year, it’s been a bumpy road,” Duncan said. “Access has been incredibly challenging even for patients who are being cared for in organizations and institutions where they are participating.”

Complete Article HERE!

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05/30/17

Death with dignity

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When end-of-life wishes collide with untenable costs

My grandmother and grandfather celebrating their 50th anniversary.

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Intellect 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!

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05/1/17

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

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

By Josh Kerns

It’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!

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04/4/17

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

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

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The 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!

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