Straight From The Patient’s Mouth

Videos Can Clearly State Your End-Of-Life Wishes

[F]or 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!

Is there ever a ‘good death’?

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!

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

By Joan Bryden,

[O]nly 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!

Families turn to death midwives for help with final passage

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

[B]efore 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.

Complete Article HERE!

The Wisdom of End-of-Life Care

Buddhist teacher Frank Ostaseski has been one of the leading voices in contemplative end-of-life care since the 1980s.

By Lion’s Roar Staff

[I]n this video, Ostaseski talks with Lion’s Roar’s Lindsay Kyte about the lessons he’s learned at the bedsides of thousands of dying people, his new book The Five Invitations, and the future of end-of-life care.

Complete Article HERE!

What It’s Like to Learn You’re Going to Die

Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

[N]essa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisisWhether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

Complete Article HERE!

Don’t want ‘heroic measures’ as part of your end-of-life care? Have the conversation

intubated patient in hospital, intubatation at intensive care unit room respiratory machine with oxygen ventilation monitor

By Allison Bond

[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.

One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.

Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.

“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.

A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.

After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.

We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?

Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.

Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.

There’s got to be a way to close these gaps.

The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.

It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.

Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.

There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.

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