12/14/17

People are hiring doulas to help them die

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By Molly Shea

Chad Lewis charges $20 to $25 an hour to assist the gravely ill and their families.

When Chad Lewis’ mother passed away seven years ago from complications from diabetes, he couldn’t stop thinking about her death. “It wasn’t loving and sweet,” he says. “It was chaotic and angry and scary.”

So Lewis, a 39-year-old who lives in Astoria, set out to find a better way to process the end of life, ultimately making a career shift from Broadway stage manager to death doula.

Doulas who aid women in giving birth have been trendy for years, but now a different type of support person is helping people navigate life’s other major passage. Dying people and their loved ones are hiring death doulas to help them coordinate end-of-life care and vigils, plan funerals and provide a sympathetic but unattached ear.

The profession first came into being in the early aughts and is growing increasingly popular. In 2014, Suzanne O’Brien launched the New York City-based Doulagivers, an online training program for death doulas.

“I can hardly keep up with demand,” says O’Brien, who also holds monthly seminars at an Upper West Side branch of the New York Public Library.

The process usually starts with a patient deciding how they want to die and outlining that with the doulas.

“It’s similar to a birthing plan … Where [do] you want to die? What kind of room you want to die in? What [do] you want to be looking at? What [do] you want it to smell like?” says Shelby Kirillin, 41, a Richmond, Va.-based death doula. She charges between $1,000 and $3,000 as a retainer fee, and asks for payment upfront to avoid chasing down money posthumously. She’ll also work pro bono if a situation merits it.

The “scary” death of Chad Lewis’ mother led him to become a doula.

“I had one young girl say she wanted to die in a yurt,” says Kirillin of a client who’s currently planning her own death. The girl’s cancer condition makes a yurt too impractical, so Kirillin is getting creative. “We decided on mosquito netting over her bed, and twinkle lights to look like stars.” After she takes her last breath, her loved ones will put wildflowers in her hair.

Death doulas also help out after someone passes. Lewis, who charges $20 to $25 per hour, likes to create a basic plan to take care of issues such as child care, grocery shopping and bill payment, to clear up mental space for grieving families.

And more than anything, the professionals help patients process what they’re going through.

“Families buffer pain — you hate to see people you love in pain. And doulas aren’t buffers,” says Kirillin. “Instead of saying, ‘OK, let’s see if we can give you meds,’ I’ll say, yeah, ‘I bet you are in pain. Tell me about it — what does it feel like?’”

When Richmond resident Mel Titus’ best friend of 31 years, Kim, was entering the final stages of her battle with cervical and breast cancers last year, they were introduced to Kirillin.

They were skeptical at first, but Kim (whose last name is being withheld for personal reasons) decided on a death doula so she could manage her death the way she did her life. “She was a processor,” says Titus. “She really liked that she could come up with a plan and do things a certain way.”

And for Titus, Kirillin provided emotional support during an impossible time. “I would have tough days, and I’d call Shelby, and she’d walk me through it,” she says.

Kirillin helped the duo plan Kim’s visitor schedule, and what music they’d play and books they’d read in the final days. Taking care of logistics freed them up to reminisce about Kim’s life, and even laugh about how things were going. “We actually had some funny moments, believe it or not,” says Titus. “It’s sad, but it can be a happy thing, too.”

Complete Article HERE!

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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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12/4/17

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

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“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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12/2/17

The Role of the Oncology Nurse in an Effective Palliative Care Family Meeting

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Oncology nurses are in the perfect position to implement ideal care for their patients via the use of the family meeting in palliative and end-of-life care. This type of meeting provides an opportunity to coordinate the responsibilities of caregivers and clinicians with patient needs, according to a study by Myra Glajchen, DSW, director of medical education, MJHS Institute for Innovation in Palliative Care, New York, and Anna Goehring, MD, palliative care physician, MJHS Hospice and Palliative Care, New York.1

Oncology nurses usually spend more time with patients than other staff and are able to answer patients’ questions about their medical conditions and discuss end-of-life issues with patients when they are ready to do so. They are also in a good position to evaluate caregivers’ condition and determine how involved caregivers want to be in helping patients make crucial decisions. These decisions are often difficult, yet Ms Glajchen and Dr Goehring write that end-of-life communication skills are not emphasized in the nursing literature.1 They note that the role of the oncology nurse in family meetings is not clear and that there has been little guidance on evaluating and managing caregiver distress.

Family caregivers have their own obligations but often bear heavy, difficult caregiving responsibilities in addition to handling their own personal concerns. Nurses can evaluate the extent to which their caregiving burdens go beyond their skills to cope and provide what their ill family member needs. Oncology nurses also are responsible for assessing the strength of the relationship between patients and their caregivers. A satisfying relationship correlates with a better commitment on the part of the caregiver, although this must be balanced with other activities to avoid caregiving becoming fraught and burdensome.

There must also be a balance with other family members; the researchers stress that a diagnosis of cancer for one family member affects the entire family. Caregivers for patients who are being actively treated for disease are in better physical and emotional health than caregivers for patients receiving palliative and end-of-life care. Oncology nurses should use family meetings to evaluate and structure caregiving situations for patients, caregivers, and their families.

The Meeting

There are a number of reasons for healthcare teams to request a family meeting. Often such meetings are about a decline in a patient’s medical condition or another change in the patient’s prognosis that requires making decisions about new treatments and different options for advance care planning. Meetings may also be called for specific purposes such as completing living wills, do not resuscitate (DNR) and do not intubate (DNI) orders, or to discuss mechanical ventilation, artificial hydration, and nutrition. The nurse’s role is key in these decisions. Oncology nurses are qualified to understand medical information, which they can easily interpret for patients and their families at these meetings. For this reason, it is important for oncology nurses to obtain and review all updated information from the patients’ clinicians prior to the meeting.

With the oncology nurse at the meeting, other clinicians only need to attend if doing serves a specific purpose.1 However, the participation of involved staff from other disciplines concerned with the patient’s care is helpful. Caregivers the healthcare team or patient wants to invite should attend the meeting, although the researchers caution there should be more caregivers than staff present so as not to overwhelm the family at this difficult time. The care team leader should explain why the meeting was called, provide a clear agenda, and should request all attendees to mute their cell phones and pagers during the meeting. A member of the healthcare team should take notes; the investigators suggested using the Family Meeting Report (Figure 1) and documenting the meeting in the electronic medical record.1

A family meeting takes time; at least an hour for preparation, an hour for the actual meeting, and half an hour to an hour for follow-up is required.1 Despite the work-intensive nature of a palliative care family meeting, the oncology nurse can be a true asset, lowering stress and offering information, realistic hope, supportive care, and comfort to patients, caregivers, and other family members.

Complete Article HERE!

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11/30/17

They Comfort Strangers, So No One Dies Alone

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David Wynn, 62, and Carolyn Lyon, 74, in Santa Ana, Calif., volunteer at a hospital where they accompany patients who are near death and don’t have loved ones to be with them in their final hours.

By Liyna Anwar

When patients are near death, and don’t have loved ones to be with them, David Wynn and Carolyn Lyon rush to the hospital.

“They have no one for various reasons, you know, they’ve outlived family, they’ve never married,” Lyon says.

For about six years, Lyon has been comforting patients in their final hours at St. Joseph Hospital in Orange, Calif.; for Wynn, it’s been about nine years.

“For some reason I always wonder about the person’s mother,” David Wynn says. “She saw him first, and I saw him last. It was her and me that are the bookends of this person’s life. So each time that I leave a patient who has died, there is this element of sadness.”

But this kind of work also has its rewards. Wynn remembers one man who was estranged from his family.

“I was sitting there with him and I heard somebody at the door. Turns out it’s his son,” Wynn says. “And he, I guess, felt a little bit uncomfortable, and so he asked me to stay.”

Then, the patient’s daughter came in. “These are people who hadn’t seen each other in maybe 10 or 20 years,” Wynn says.

While the family members exchanged apologies, Wynn recalls the daughter saying, “I don’t even know why I was angry at you, I don’t even remember.”

“And they said, ‘We’re going to try to be a family again,’ ” Wynn says.

“You know, we talk about the last senses to go would be the sense of touch and hearing,” Wynn says. “And I hope that there was enough left of the dad that he had some sense that this bad situation had been healed through his death.”

Wynn says he felt honored, simply to witness that reconciliation, at the end of the man’s life.

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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