12/11/17

Most people want to die at home, but many land in hospitals getting unwanted care

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By Andrew MacPherson and Ravi B. Parikh

Where do you want to die? When asked, the vast majority of Americans answer with two words: “At home.”

Despite living in a country that delivers some of the best health care in the world, we often settle for end-of-life care that is inconsistent with our wishes and administered in settings that are unfamiliar, even dangerous. In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not.

Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.

Using data from the Dartmouth Atlas — a source of information and analytics that organizes Medicare data by a variety of indicators linked to medical resource use — we recently ranked geographic areas based on markers of end-of-life care quality, including deaths in the hospital and number of physicians seen in the last year of life. People are accustomed to ranking areas of the country based on availability of high-quality arts, universities, restaurants, parks and recreation and health-care quality overall. But we can also rank areas based on how they treat us at an important moment of life: when it’s coming to an end.

It turns out not all areas are created equal. Critical questions abound. For example, why do 71 percent of those who die in Ogden, Utah, receive hospice care, while only 31 percent do in Manhattan? Why is the rate of deaths in intensive care units in Cedar Rapids, Iowa, almost four times that of Los Angeles? Why do only 12 percent of individuals in Sun City, Ariz., die in a hospital, while 30 percent do in McAllen, Texas?

Race and other demographics in a given area certainly matter. One systematic review of more than 20 studies showed that African American and Hispanic individuals utilize advance-care planning and hospice far less than whites. More research is needed to explore these differences and to close these gaps and demand high-quality, personalized care for people of all races.

But race and demographics don’t provide all the answers. For instance, Sarasota and St. Petersburg, Fla., are only 45 miles apart and have similar ethnic demographics. Yet we found that they score quite differently on several key quality metrics at the end of life.

A variety of factors probably contribute to our findings. Hospice, which for 35 years has provided team-based care, usually at home, to those nearing the end of life and remains enormously successful and popular, is under­utilized. Most people enroll in hospice fewer than 20 days before death, despite a Medicare benefit that allows patients to stay for up to six months. Hospice enrollment has been shown to be highly dependent on the type of doctor that you see. In fact, one study among cancer patients with poor prognoses showed that physician characteristics (specialty, experience with practicing in an inpatient setting, experience at hospitals, etc.) mattered much more than patient characteristics (age, gender, race, etc.) in determining whether patients enrolled in hospice. For example, oncologists and doctors practicing at nonprofit hospitals were far more likely than other doctors to recommend hospice.

Also, physicians in a given geographic area are likely to have similar approaches to health care. They may collectively differ from physicians in another area in their familiarity and comfort with offering hospice care to a patient. This may explain why hospice enrollment significantly varies among geographic regions.

Palliative care, which focuses on alleviation of suffering, is often misunderstood by doctors as giving up. Health professionals’ lack of longitudinal, substantive training in end-of-life care only compounds the problem.

Perhaps most important, fewer than half of Americans have had a conversation about their end-of-life wishes — a process known as advance care planning — and only one-third have expressed those wishes in writing for a health-care provider to follow when they become seriously ill. If people do not have a clear sense of their end-of-life wishes, it is easy to imagine that they may be swayed by a physician’s recommendation.

The private sector has led the way in addressing the under­utilization of hospice and improving end-of-life care. For instance, health insurers such as Aetna have devised programs integrating nurse-led case management services for seriously ill individuals, reducing costly and undesired emergency room visits while increasing appropriate hospice referrals. And start-ups including Aspire Health are working with communities to provide palliative care in people’s homes while devising algorithms to help payers and providers identify individuals who might benefit from palliative and hospice care.

Congress also is considering bipartisan solutions consistent with best practices. Congressional leaders have recently introduced several pieces of legislation that would test new models of care for those facing advanced illness, support health professionals in training for end-of-life care and ensure that barriers are removed for consumers to access care.

And Medicare, via its Innovation Center, has led the way in testing promising care models to support those at the end of life, including the Medicare Care Choices Model, which allows individuals to receive hospice care alongside traditional, curative treatment.

But the secret sauce may be a shift in culture. We will not improve the death experience until we demand that our public- and private-sector leaders act and that our local health professionals encourage person-centered end-of-life care.

As with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. There are good and bad places to die in America. However, to ensure a better death for all, we must confront not just geographic disparities but also our resistance to thinking about death.

Complete Article HERE!

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12/8/17

Can a dying patient be a healthy person?

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By and

The news was bad. Mimi, a woman in her early 80s, had been undergoing treatment for lymphoma. Her husband was being treated for bladder cancer. Recently, she developed chest pain, and a biopsy showed that she had developed a secondary tumor of the pleura, the space around one of her lungs. Her oncology team’s mission was to share this bad news.

Mimi’s case was far from unique. Each year in the U.S., over 1.6 million patients receive hospice care, a number that has been increasing rapidly over the past few years. What made Mimi’s case remarkable was not the grimness of her prognosis but her reaction to it.

When the members of the team walked into Mimi’s hospital room, she was lying in bed holding hands with her husband, who was perched beside her on his motorized wheelchair. The attending oncologist gulped, took a deep breath, and began to break the news as gently as he could. Expecting to meet a flood of tears, he finished by expressing how sorry he was.

To the team’s surprise, however, no tears flowed. Instead Mimi looked over at her husband with a broad smile and said, “Do you know what day this is?” Somewhat perplexed, the oncologist had to admit that he did not. “Today is very is special,” said Mimi, “because it was 60 years ago this very day that my Jim and I were married.”

The team members reacted to Mimi with astonishment. How could an elderly woman with an ailing husband who had just been told that she had a second, lethal cancer respond with a smile? Compounding the team’s amazement, she then went on to share how grateful she felt for the life she and her husband had shared.

Mimi thanked the attending oncologist and the members of the team for their care, remarking how difficult it must be to deliver bad news to very sick patients. Instead of feeling sorry for herself, Mimi was expressing sympathy for the people caring for her, exhibiting a remarkable generosity of spirit in the face of a grim disease.

The members of the team walked out of Mimi’s room shaking their heads in amazement. Once they reached the hallway, the attending physician turned and addressed the group: “Mimi isn’t the only person in that room with cancer, but she is surely the sickest. And yet,” he continued, to nods all around, “she is also the healthiest of any of us.”

“Be thine own palace, or the world’s thy jail.” – John Donne

Disease need not define us

Mimi’s reaction highlights a distinction between disease and illness, the importance of which is becoming increasingly apparent. Simply put, a body has a disease, but only a person can have an illness. Different people can respond very differently to the same diagnosis, and those differences sometimes correspond to demographic categories, such as male or female. Mimi is a beautiful example of the ability to respond with joy and gratitude in the face of even life’s seemingly darkest moments.

Consider another very different patient the cancer team met with shortly after Mimi. Ron, a man in his 40s who had been cured of lymphoma, arrived in the oncology clinic expecting the attending oncologist to sign a form stating that he could not work and therefore qualified for disability payments. So far as the attending knew, there was no reason Ron couldn’t hold a job.

Ron’s experience of disease was very different from Mimi’s, a phenomenon familiar to cancer physicians. Despite a dire prognosis, Mimi was full of gratitude. Ron, by contrast, though cured of his disease and apparently completely healthy, looked at his life with resentment, even anger. He felt deeply wronged by his bout with cancer and operated with a sense that others should do what they could to help make it up to him.

Mimi was dying but content with her life. Ron was healthy but filled with bitterness. Both patients had the same diagnosis – cancer – but the two human beings differed dramatically, and so too did their illness experiences. Mimi felt blessed by 60 years of a good marriage, while Ron saw in his cancer just one more example of how unfair life had been to him.

“Death be not proud, though some have called thee Mighty and dreadful, for thou art not so…” – John Donne

The real meaning of health

When the members of the cancer team agreed that Mimi was the healthiest person in the room, they were thinking of health in terms of wholeness or integrity. In fact, the word health shares the same source as the word whole, implying completeness or fullness. Ron felt repeatedly slighted, but Mimi looked at life from a perspective of abundance.

A full life is not necessarily marked by material wealth, power over others, or fame. Many people who live richly do so modestly and quietly, never amassing fortunes, commanding legions, or seeing their picture in the newspaper. What enriches their lives is not success in the conventional sense but the knowledge that they have done their best to remain focused on what really matters.

Mimi easily called to mind many moments when she and those she cared about shared their company and their love. Any sense of regret or sorrow over what might have been quickly gave way to a sense of gratitude for what really was, still is, and will be. Her outlook on life was shaped by a deep conviction that it had a meaning that would transcend her own death.

When someone has built up a life ledger full of meaningful experiences, the prospect of serious illness and death often do not seem so threatening. For Mimi, who had lived most of her days with a keen awareness that they would not go on forever, death’s meaning had been transformed from “Life is pointless” to “Make every day count.”

Mimi regarded the prospect of dying as a lens through which to view the meaning of life. She saw her illness as another adventure through which she and Jim would pass. Death would separate them, but it would also draw them closer together, enabling them to see more clearly than ever how much their love meant to them.

From Mimi’s point of view, death is not a contaminant, fatally introduced to life at its final stage. Instead death is a fire that burns away all that is not essential, purifying a person’s vision of what is most real and most worth caring about. Though not happy to be ill, Mimi was in a profound sense grateful for death. Her sentiments echo those of the poet John Donne:

“One short sleep past and we wake eternally: And death shall be no more; death, thou shalt die.”

Complete Article HERE!

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12/7/17

Two state medical societies drop opposition to medical aid-in-dying

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by Joanne Finnegan

Two state medical societies have dropped their opposition to medical aid-in-dying, a position that mirrors growing acceptance of the practice among many doctors.

The Massachusetts Medical Society on Saturday became the 10th chapter of the American Medical Association to depart from the profession’s long-standing opposition to physician-assisted dying, according to an organization announcement.  

The Vermont Medical Society also recently joined the list of medical associations that have voted to take a neutral stance on physician-assisted death. Massachusetts and Vermont joined medical societies in California, Colorado, Maryland, Maine, Minnesota, Nevada, Oregon and the District of Columbia in dropping opposition to what was once called physician-assisted suicide. Supporters of legislation that allows doctors to write a prescription for a lethal dose of medication that terminally ill adults can use to end their lives now prefer the term medical aid-in-dying.

The shift in position is a new one, as nine of those medical societies adopted a neutral stance in the last two years, according to the group Compassion & Choices. The group praised the action by the Massachusetts physicians’ group, which it hopes will improve the chances for passing legislation in the Bay State to legalize aid-in-dying.

The society’s House of Delegates voted to adopt a position of “neutral engagement,” which it says will allow it to serve as a medical and scientific resource as part of legislative efforts that will support shared decision-making between terminally ill patients and their physicians. The change followed the release of a survey of the society’s members that showed they supported the aid-in-dying bill the state legislature is considering by a 2-1 margin, Compassion & Choices said.

Also applauding the decision was Roger Kligler, M.D., a retired doctor who has stage 4 metastatic prostate cancer and filed a lawsuit against the state seeking the right to die using self-administered medication. Compassion & Choices and a fellow physician, who wants the right to prescribe medications to help patients die without fear of prosecution, have joined in that lawsuit.

“I am excited about this decision because the legislature greatly respects the medical society’s positions on healthcare issues and its previous opposition to medical aid-in-dying was a serious roadblock to passing legislation authorizing this end-of-life care option. I’m extremely grateful for the society’s change of heart,” Kligler said in the group’s announcement.

The Massachusetts society’s vote came after considerable discussion, as aid-in-dying raises ethical questions for many physicians.

Six states, including California, Colorado, Montana, Oregon, Vermont and Washington, as well as the District of Columbia, have explicitly authorized medical aid-in-dying

In Vermont, the medical society’s action caught up with existing law. The society dropped its opposition to the state’s 2013 death with dignity law, adopting a resolution at its annual meeting that says doctors have a right to decide if they should assist their patients in ending their lives.

While some physician groups have changed their stance, others have held firm. The American College of Physicians published an updated position statement in September reaffirming its opposition to legalization of what it still calls physician-assisted suicide.

Complete Article HERE!

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12/4/17

Straight From The Patient’s Mouth

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Videos Can Clearly State Your End-Of-Life Wishes

For years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said.

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

“I was like ‘Oh my God, it’s like someone was reading my diary — this is exactly what I want,’” she recalled.

Only a few U.S. organizations offer people the chance to create video testimonials, which are meant to supplement and expand upon written living wills and Physician Orders for Life Sustaining Treatment (POLST), now available in 26 states. Do-it-yourself videos are also a convenient option.

One organization doing pioneering work in this field is the Institute on HealthCare Directives, founded by Dr. Ferdinando Mirarchi, the Pennsylvania physician whose work Forman heard about. Others include MyDirectives, a Texas company that helps people create digital advance directives, including personal video and audio statements; Life Messages Media of Wisconsin, which also creates video memoirs and ethical wills, a way to share your values with your family; and In My Own Words, launched by a geriatric psychologist in California.

These organizations hope the videos will help physicians and families interpret and follow written advance directives. About one-third of adults have such end-of-life documents.

“It can give everyone confidence that Mom was competent and knew what she was signing and that no one tricked her by sticking a document in front of her and asking her to sign,” said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.

Similarly, videos have the potential to ease some of the emotional angst that surrounds end-of-life decision-making. “A family gets to hear Mom saying, in her own words, what she wants, which can be profoundly reassuring,” said Dr. Monica Murphy, medical director of advance-care planning and end-of-life education for Huntsville Hospital System in Alabama.

Formats vary. The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations.

Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth. The cost: a one-time fee of $350, which covers 10 years of follow-up consultations and maintenance, or a setup fee of $50 to $100 accompanied by an annual fee of $35 to $50.

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

Easy accessibility to the videos is essential but may not be practical, yet. The institute houses videos on a server; they can be called up on digital devices via QR codes, or hyperlinked bar codes, that are printed on cards given to clients. (Forman carries hers in her wallet, next to her insurance card.) Passwords are discouraged because these might be a barrier in an emergency. Still, medical personnel aren’t accustomed to searching for cards of this sort.

Videos by MyDirectives clients also tend to be short — between 15 seconds and a minute. The service is free to consumers; the company’s business model relies on partnerships with health care organizations. “The consumer deserves to have their voice heard in electronic health records” that these organizations maintain, said Jeff Zucker, MyDirectives chief executive officer, who hopes that health systems will eventually embed patient videos in those records.

What weight video testimonials will carry in legal conflicts has yet to be determined. Only Maryland allows advance directives to be conveyed in a video format, while New Jersey explicitly recognizes video or audiotapes as supplements to written documents, according to the American Bar Association’s Commission on Law and Aging.

Multimedia advance directives likely will be taken into account in end-of-life disputes, just as a daughter’s statement that “Mom told me this is what she wanted last week” is given consideration, Pope said.

“Since the only thing that constitutes clear and convincing evidence under the law is the written advanced directive, make sure your video is consistent with what’s expressed in these documents,” he advised.

Physicians seem receptive to the videos. According to a study published this year, doctors were more likely to agree about recommended treatments for patients in difficult circumstances after viewing patient videos, as well as evaluating written advance directives.

“Doctors always question whether we’re doing the right thing when it’s just the paper document,” Mirarchi explained. “When you can see a patient expressing what their true intended wishes are, in their own voice, looking into a camera, that’s a very powerful tool.”

For their part, patients seem comfortable speaking before a camera, according to unpublished research conducted by Dr. Angelo Volandes, an internal medicine doctor at Massachusetts General Hospital and a pioneer in creating videos that help patients understand the pros and cons of end-of-life interventions.

Complete Article HERE!

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12/3/17

Is there ever a ‘good death’?

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As a doctor, Diana Anderson has often used the phrase, but rethinks it after losing a loved one

By

“It was a good death,” the doctor said after one of our patients passed away while I was a resident physician on the night shift. The same line, I remembered, ends one of my favourite movies, Legends of the Fall, when Brad Pitt’s character dies at an old age from a bear attack.

My role throughout the night had been to adjust the medication. I would frequently check on my patient’s vital signs and update his family huddled at the bedside of the elderly man.

“How long will it be, Doctor?” they would ask each time I approached.

But I could not say for certain. “Most likely a few more hours, or less,” I would reply, based on the vital signs, the medications but mostly on a clinical gestalt I was learning.

As a physician-in-training, I would go on to use the “good death” expression. At that time, it carried a meaning of death free from lines and tubes, medications administered for comfort and family at the bedside. But I question this expression now, after the death of Baba, my grandmother.

Baba lived alone in her house, feeding her backyard birds and squirrels religiously, and reading The Economist and National Geographic regularly.

My sister and I were lucky to have a grandmother by our side as children and even luckier to have her with us so far into our adult years as a guide and confidante. Baba and I kept in touch with frequent calls and weekly letters by mail. Through writing, she and I shared a unique bond. In the last letter I wrote her, I told her how much her life had impacted and touched us. For me, that meant inspiring a role working with older people.

Shortly after her 97th birthday, Baba fell and was no longer able to live on her own. I moved into her small house for two weeks as we secured a bed at a nearby nursing home. Even after working as a physician for days at a time without sleep, nothing could compare to the exhaustion I felt as a full-time caregiver.

Each time I changed her diapers, Baba became tearful, saying she felt humiliated and was a burden. Nevertheless, she found a way to laugh, recalling that she had changed my diapers as an infant and now “I am the baby who needs changing.” We chuckled over that each evening.

In the nursing home, her frailty seemed to increase rapidly. She was sad and cried often. Living in one room was “not really life,” she said to me a few days before she died.

She was suffering, but the best medicines seemed to be not what physicians could prescribe. It was the family visits, access to sunshine, nature views and the pet-therapy sessions – those brought smiles and a certain calmness that no pharmaceutical therapy ever could. The day before she died, she told me to “live life to the fullest, even if that means experiencing pain and heartache in addition to the joy and happiness.”

Baba wished often to simply fall asleep and not wake up and had concerns over how she would die. “I am ready to go,” she would say to me, “I have no more purpose.” I would tell her she was greatly needed, as the anchor to our little family – our supply of strength and endurance. She served as the one to go to for a listening ear and for her life wisdom. We were not ready to let her go.

One day, I got the call.

“You should come now. We think she is dying.” How many times have I made that same call to families, to tell them to come in but to drive carefully?

We did not drive carefully or slowly that night. A second call minutes later stated that, after some oxygen, she had regained her mental status and was speaking again, so perhaps I did not need to come back. The gas pedal was pressed even harder, the doctor in me knew too much to be comforted by those words.

Baba died 18 hours later.

Although she was still lucid when I arrived, she was in pain and visibly distressed. When I took her hand, she knew my name, but asked if she must be dreaming. “No, it’s not a dream, Baba, I am here.”

Overnight, there were limited orders for palliative medications. As a physician, I felt powerless and assumed my role as granddaughter. By morning I called my family and said they should come.

The day-shift palliative nurse immediately assessed the situation and ordered medications. She then asked me when to administer them. I knew that once we began, Baba would be with us less and less. My parents, sister and our dog, Bilirubin, assembled around her bed. Baba’s eyes lit up to the sensation of Bili’s furry coat on her hand. She knew our names. “Go ahead,” I said to the nurse.

Over the next few hours, Baba’s breathing slowed considerably. Dying takes time. Each time I thought her last breath came, she would then take another. When no breaths came for many minutes, I put my head on her chest and felt nothing – no heartbeat, no breath and no life.

After her death, I cried often for many days.

As a physician, I would call what Baba went through a “good death.” She passed away almost as she had wished, as if she had simply fallen asleep. She did not experience a massive heart attack or stroke, she did not endure trauma and she was not bedridden with painful lines and tubes. She had her whole family around, her hands were held and she was told she was loved. How could this be anything but a good death?

But as a family member, I wouldn’t call this a good death. It was simply a difficult death. There really is no other kind of death when you lose someone so close. Perhaps the last line in the movie should not have been that it was a good death, but rather, “It was a good life.”

Complete Article HERE!

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11/28/17

Drug commonly used for self-administered death now available in Canada

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By Joan Bryden,

Only a tiny percentage of Canadians who’ve received medical assistance to end their lives has chosen to self-administer a lethal drug cocktail.

But that could change now that secobarbital — the drug most commonly used for assisted suicide in other countries — is available in Canada.

Secobarbital is considered the best way for suffering individuals who want to control the manner of their death as much as possible, including administering the medication themselves.

“It’s kind of the barbiturate of choice because (its) quicker onset and duration is such that the dying period is reduced,” said Dr. Stefanie Green, president and co-founder of the Canadian Association of MAID Assessors and Providers.

“Much of the other recipes cause an extended dying period to happen, which is not always successful.”

Health Canada reports that from June 2016 to June 2017 — the first year in which medical assistance in dying (MAID) was legal in Canada — a total of 1,982 individuals received an assisted death. Of those, just five were self-administered deaths.

Green said the unavailability of secobarbital may, at least in part, explain the small number of self-administered deaths.

In general, orally ingested drug cocktails present some difficulties that are not associated with those injected intravenously: they taste bad, they can induce nausea and vomiting, the patient can fall asleep before the entire dose is consumed, which can ultimately cause it to be ineffective.

“You want to mitigate those factors as best as possible,” Green said. “So if you’re going to choose to use a barbiturate and an oral cocktail, this (secobarbital) would be the best one.”

Among other things, she said secobarbital is more soluble than other barbiturates, meaning it can be dissolved in a smaller volume of liquid, thereby reducing the risk that patients won’t consume the entire dose.

Green expects that self-administered deaths will increase somewhat now that secobarbital is available.

“There are certainly a significant amount of people who want to be the ones to have the control, who want to be the ones with the medication in their hand, who want to say, ‘I’m going to take this to my backyard and drink it when I darn well please, thank you very much,”‘ she said.

The drug may be particularly helpful in rural or remote areas where it may be difficult to find a nearby physician or nurse practitioner willing to provide an assisted death, Green added. Individuals in those areas may find it easier to get a prescription for a lethal dose of secobarbital that they can administer themselves.

Because it is fast-acting, secobarbital may also make the self-administration option more viable in a province like British Columbia, where Green practices and which requires a physician to be present throughout the assisted dying process, even when the patient self-administers the medication. That was not feasible when the barbiturates used could take hours, or even days, to work, she said.

Secobarbital, once widely used as a sedative decades ago, has not been available in Canada for years. That it is now is largely due to Jocelyn Downie, a professor of law and medicine at Dalhousie University and a passionate advocate of medical assistance in dying.

When she realized few people were using the self-administration option, Downie said she explored ways to make secobarbital available. She discovered that the cost and time required to get the drug approved for marketing in Canada was a big obstacle so she found “an alternate path:” persuading a pharmaceutical products company to provide the active ingredients for the medication that can be compounded, or mixed, by a pharmacist to produce secobarbital.

Since the company doesn’t want its name publicized, Green said her organization is acting as “the middleman.” It will provide the necessary contact information to health care providers and pharmacists who are helping patients who choose the self-administered death option.

“For those of us in the field, it’s good news, it’s very good news to be able to offer this extra option to our patients, some of which we know will take it and we’ll be happy to provide a better quality product for them,” said Green.

Complete Article HERE!

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11/26/17

Families turn to death midwives for help with final passage

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Anna Benton, of Milwaukee, left, Georgette Paxton, of Madison, center, and Jennifer Snow, of Waunakee, look over Heather Ockler, of Monona, who is playing the role of a dying person wrapped in a shroud during a home funeral demonstration. It was part of a death midwife class taught last month by Sharon Stewart, who helped aspiring death midwives practice skills such as washing and shrouding a body. Death midwives, sometimes called death doulas, are increasingly helping families prepare for and navigate the death of loved ones, in addition to or instead of hospice care and funeral homes.

By DAVID WAHLBERG

Before Valli Warren’s husband died last year after a long illness, the Stoughton couple knew they wanted a home funeral and green burial.

But they weren’t sure how to make those things happen. They turned to Sharon Stewart, who delivered ice packs to preserve the body, shared videos about how to wrap it in a shroud and taught pallbearers how to carry it out of the house on a board.

Stewart also helped Warren file paperwork, including a permit letting her transport her husband to Circle Cemetery, near Barneveld, where he was laid to rest without being embalmed or using a casket or vault.

“She walked me through every phase,” Warren said.

Stewart is a death midwife, a new kind of occupation that provides emotional, spiritual and practical support to families before and after death — in addition to, or instead of, hospice care and funeral homes.

The service, which has emerged around the country over the past decade, is analogous to what birth midwives do compared to obstetricians. Some who offer the assistance call themselves death doulas or end-of-life midwives.

‘Back to their roots’

Whatever the title, the providers say they help people “take back” the death process from hospitals and funeral homes. Services include leading family discussions about death planning, sitting vigil with people as they die, helping family and friends wash the body afterward and aiding in tasks such as selecting memorial cards, sending obituaries to newspapers and closing social media accounts. It often involves home funerals or green burials.

“We’re taking families back to their roots, the tradition of when we were born and when we died in our own homes,” said Stewart, a former detective who lives near Brooklyn, south of Madison. “We laid in honor in our parlors, and the community came together to provide care for the family.”

Liz Humphries, a former birth midwife and hospice nurse who recently added an end-of-life doula service to Seasons of Life, her senior care company in Middleton, said, “It’s about reclaiming a really sacred and beautiful human experience.”

Mary Paulauskis, a former hospice nurse from Madison, has added what she calls end-of-life transitions counseling to her business, Mindful Awakenings, through which she teaches meditation.

Paulauskis focuses on helping people think about who and what they want around them as they die. She also coaches loved ones on what to say to a dying person and how to interact — letting them know it’s OK to lie next to the person if they want to, for example.

“It’s creating a space of whatever the patient said they want,” Paulauskis said.

Many people don’t realize that there are several ways to dispose of bodies without embalming, including new, greener types of cremation, said Angie Buchanan, a death midwife in Waukesha who trains death midwives around the country. She informs clients of the options and guides them through their choice.

“We’re the water that runs between the rocks of the medical profession and the funeral industry,” Buchanan said.

Dr. Toby Campbell, chief of UW Health’s palliative care program and a board member of Agrace Hospice and Palliative Care in Fitchburg, said he understands why death midwives are catching on. He said hospice care typically includes two or three visits a week from a nurse or social worker, and an occasional call from a doctor.

“That leaves about 99 percent of the time you and your family are on your own,” Campbell said. “That’s a big space. There are giant gaps between the health care system and death, even including hospice.”

Jim Olson, president-elect of the Wisconsin Funeral Directors Association, said caring for a body after death and managing a funeral are big jobs. Most people will continue to seek help from funeral directors, he said.

Death midwifery is “another alternative for families, which we think is great,” said Olson, who owns Olson Funeral Home and Cremation Service in Sheboygan. “Am I afraid it’s going to affect my business? No, absolutely not.”

There is no licensure or government certification for death midwives. Experienced practitioners, such as Stewart and Buchanan, offer training, as does the New Jersey-based International End of Life Doula Association, which held a session in Madison last year.

Many training programs offer their own certification. The burgeoning field is in a similar situation to massage therapy in the 1990s, before doctors pushed for its regulation, Buchanan said. In Wisconsin, certification for massage therapists started in 2003, with licensure beginning in 2010.

Fees for death midwives vary. Buchanan said she charges $100 for a consultation and up to $2,000 for services covering the whole death process. Stewart has accepted donations of $100 or $200 from some clients, but she doesn’t plan to establish rates until she retires from her day job, at the state public defender’s office, and devotes more time to death midwife duties.

Paulauskis said she plans to charge $25 to $50 for a counseling session and negotiate rates for other services but let people pay what they can. An academic adviser at the UW-Madison School of Social Work, she plans to continue making her living in other ways.

Humphries, who started her end-of-life doula service last month, said she might charge $40 to $100 an hour but offer a sliding-fee scale for people with low incomes.

Humphries is also an organizer of Walking Each Other Home Madison, a group that started in 2014 to help people carry out home funerals and green burials. People can rent the group’s home funeral kit, which includes a body board, ice packs, soap, lotion, diapers, latex gloves and small bags of rice to place over the dead person’s eyes to keep them closed.

‘The personal touch’

Stewart, who has long volunteered at Monroe Clinic’s hospice program, said she saw the need for a more personal death service after her brother died in a car crash at age 19. She was 21.

Police came to the house in the middle of the night, told her mother her son was dead and left. Stewart wanted to see her brother’s body before he was embalmed, but the funeral director wouldn’t let her, she said.

“There had to be a better way,” she said.

Later, as a detective for the Lafayette County Sheriff’s Department in Darlington, Stewart tried to deliver death notifications with more sensitivity. But she wasn’t able to do all she wanted to help grieving families. After a shoulder injury forced her to retire, she discovered death midwifery.

“I thought, ‘This is it. This is the personal touch. This is the attention that families need,’ ” she said.

At a death midwife class she taught last month, Stewart told students to help dying people reconcile with others if they ask, separate arguing family members at the bedside if necessary and encourage loved ones to say goodbye and leave the room if the dying person wants to die alone.

“Your job as a death midwife is to be an advocate for that dying person,” she said.

When Laurie Larson’s husband, Dennis Presser, died suddenly from a heart attack at age 54 four years ago, Stewart helped Larson and her two teenage children navigate the chaos.

Stewart joined Larson when she met with a funeral director to plan the funeral, which took place at the funeral home.

She organized an intimate gathering for family and close friends at the crematorium, with candles, incense and music. As Presser’s body lay inside an open cardboard cremation box, people read poems, told stories and colored the box. Then they placed him in the chamber, and Larson hit the ignition switch.

“I would never have had the energy to create that beautiful ritual,” said Larson, of Madison. “Sharon helped me in so many ways that I never would have thought I needed to be helped.”

Warren’s husband, Spencer, died at 64 from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.

Stewart helped the couple carry out their wishes. His body remained at home for three days, instead of being whisked off to a funeral home. “I had time to be with him; it was very healing,” Warren said.

As family and friends came for the home funeral, volunteers changed ice packs beside his body as he lay on their bed for viewing. Warren drove him to Circle Cemetery, where gatherers sang and played guitar before shoveling dirt over his shrouded body.

“It was the most natural thing I’ve ever experienced,” Warren said.

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