The Professionals Who Want to Help You Plan Your Death

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[W]hen events involve a lot of moving pieces, it’s common to bring in a specialist. We have planners for weddings, parties, corporate retreats, and more — people who help us nail down our goals, explain complicated rules and contracts, and take care of the logistics so we can focus on the parts that matter most. When it comes to the most difficult event of all, though, many of us are on our own. Enter end-of-life specialists, who make it their job to guide dying people and their families through all the details they never wanted to think about.

Michelle Acciavatti, a former neuroscientist and ethics consultant, is the woman behind Ending Well, a Vermont-based business that helps people plan, prepare for, and experience “their own good death.” After working in hospitals and in hospice care, Acciavatti says, she began to notice repeated problems with end-of-life care: patients and family members not feeling listened to, people feeling too afraid or uncomfortable to broach the subject of death, outright denial about what was coming. Through Ending Well, she now offers services to help her clients come to terms with mortality, whether that means caring for a dying loved one, mourning a miscarriage or stillbirth, or planning their own advance care

“My work is to help people face and embrace the fear that keeps them from living well,” she says. “I educate people about their options at the end of life, but, hopefully, I also help them learn about themselves.” To do that, Acciavatti helps people articulate their priorities around death — do they want a home funeral? have any last requests? what do they want their legacy to be? — and then works to convert those desires into a concrete plan.

In part, that means handling all the logistics (for example, she has the legal and practical knowledge to hold a home funeral in any U.S. state), but Acciavatti says that “values-based care planning,” or helping people figure out their quality-of-life goals, is the element that she finds most meaningful.

“A big fear for many people doing advance-care planning is dementia,” Acciavatti explains, “and many people say they wouldn’t want to live if they couldn’t recognize their family members. In my process, we try and unpack that statement. What does ‘recognize’ mean? Remembering their names? Their relationship to you? Or recognizing them as people who love you even if you can’t place them?”

“Since you can’t possibly plan for every possible medical outcome and potential intervention,” she adds, “I find it’s much more useful to do the self-work to understand your values for living well and find where the line is in that way.” For example, a person might initially shy away from the idea of a breathing machine, but change their mind once they begin to consider when in their disease progression they may need one.

Once a person figures all that out, the next step is making their wishes known. Acciavatti urges her clients to have “an ongoing and evolving conversation … with your family, your doctor, with anyone who might be involved or have an opinion about your care, so that they understand why you have made the plans you have made.”

Amy Pickard, whose Los Angeles–based company Good to Go! helps guide groups and individuals through end-of-life paperwork, agrees. “Most people don’t even talk about those things, let alone put their wishes down in writing,” she says. “Imagine how traumatizing that would be if suddenly your loved one needed you to make life/death decisions for them and you never talked about it before.”

Pickard founded Good to Go! after losing her mother, an experience that left her unprepared to navigate what she calls “the death duties.” “I was stunned to learn of all the work involved after someone dies,” she says.
“When you’re grappling with an unbearable reality, which is when your fiercest cheerleader, best friend, and the one who loves you the most on the planet is dead, the last thing you want to do is spend every waking moment encountering nonstop questions about the deceased person’s life and estate.”

But how do you make a long conversation about death seem like a fun way to spend a weekend afternoon? The answer, Pickard decided, was to recontextualize advance planning as a party, complete with upbeat playlists, food, and plenty of humor. “I joke that Good to Go! is like when you give your dog a pill wrapped in cheese,” Pickard says. “The pill is confronting your mortality and G2G! is the cheese.”

“Basically, Amy saved me,” says Erika Thormahlen, a client of Pickard’s. When the two women met in Los Angeles years ago, “it was occurring to me how little I knew about my mom’s wishes for end-of-life stuff … We were a don’t-ask-don’t-tell family in a way, and my mother both always wanted to remain positive and also never wanted to be a burden.” Worried about potential awkwardness when she raised the subject, Thormahlen asked her mother if it would be okay if “my pal Amy came over and we filled out some questions together.”

When Thormahlen’s mother passed away a month after Pickard’s visit, “the dozen notes I made informed both my handling of her memorial and how I try to honor her life,” Thormahlen says. “I feel very privileged to have been there — and Amy made it this wonderful memory I often return to.”

The Good to Go! “departure file,” as Pickard calls it, includes a template for a living will (a document outlining a person’s desires for their end-of-life medical care) and a booklet covering almost everything the living will doesn’t: contact information for doctors and business associates; bills, social-media passwords; plans for children and pets; instructions for what should be done with photos, journals, and other personal belongings; and funeral and body disposition wishes, from where to distribute ashes after a cremation to whether an obituary is desired and what photo ought to be used.

“It’s basically every question that came up after my mom died,” Pickard says. “Since she died unexpectedly, I had to guess. I don’t want anyone else to have to guess.”

Clients of Pickard’s can go through the departure file on their own time or during one of her Good to Go! parties, which she throws monthly in L.A.; she hopes to take the event on the road this summer.

Over in Vermont, Acciavatti of Ending Well also says she hopes to expand her services down the line: “I want to offer everything!” she says.
“Anything someone tells me they need — if it resonates with me I want to do it. Reiki, therapeutic massage, music therapy, aromatherapy … Holding space for people to create their own rituals, tell their own stories.”

“If I’ve done my work well,” she adds, “people are dying in the manner they chose.”

Complete Article HERE!

The long goodbye: Home burial can bring comfort

BY CATHERINE ASHE

[I] never had any reason to think I’d have to plan my own child’s funeral. And yet, last July, that’s exactly what my husband and I found ourselves doing. Our unborn son, James, had just been diagnosed with trisomy 18, a terrible chromosomal disease, at 32 weeks of gestation. We’d read the grim statistics for this disease, the second-most common trisomy after Down syndrome (trisomy 21), and we knew that his time with us was likely to be short.

This awful news forced us to confront impossible questions: How did we want his brief life to look? How did we want him cared for after death? Instead of buying diapers and looking at cute baby boy clothes at Target, I was looking at cemeteries and trying to decide between cremation and burial. At 32 weeks pregnant in the miserable summer heat, I was writing a eulogy for my unborn child.

Catherine Ashe and her son, James

During this time, I came across a beautiful article written by a grieving mother whose adult daughter had died at home in hospice care after battling cancer. The writer cared for her daughter’s body, held an extended at-home visitation, and then buried her daughter at home. The article moved me to tears, because it captured perfectly how I feel about death.

In a society where death is largely relegated to hospitals, impersonal mortuaries and mass cemeteries, home burial has fallen by the wayside. Yet just a generation or two ago, death was recognized as a natural part of life. The deceased’s remains were handled by the family, and burial was done at home, in a family plot. Visitations often lasted for days. There was time for loved ones to say goodbye in a peaceful, familiar and welcoming environment.

After reading that article, I started researching North Carolina’s funeral and burial laws, and what I found surprised me. Home burial is permitted, as long as the interment is on private land, and just about anyone can transport the body. At no point does a funeral home have to be involved. The only specific regulations involve burial of a body too close to a reservoir or other public water source.

When James was born, he surprised everyone with his strength. He had five wonderful months with us. During his 154 days on earth, he was always with either me or his father. We cared for him through the good times and the bad. He was a fat, contented baby with big blue eyes and crazy brown hair.

On Jan. 2, 2017, he slipped out of this world, cradled in our loving arms. At that point, he was a patient in Mission’s pediatric intensive care unit. After his death, we held him, his grandparents and uncles held him, and his care team said goodbye to him. And then we simply walked out of the hospital, carrying James in our arms. We had cared for him in life; now we would care for him in death.

On Jan. 3, we hosted an extended visitation at our house. This was made possible by a CuddleCot — a cooling device that will preserve a small body for quite some time. It’s a noninvasive alternative to embalming. During my research, I’d also learned that embalming a body isn’t necessary: Cooling serves the same purpose.

Thanks to the CuddleCot, we were able to have James at home with us so we could say goodbye. Prior to his birth, I’d read about other parents doing the same thing — and at the time, much as I’m ashamed to say it, I thought it was morbid. Why would you want your child’s body in the house with you?

It wasn’t till James died that I understood: James was still James. Nothing changed when he died. He was still my baby. It seemed only natural to bring him home to the place he’d known his whole life, to give us time to adjust to losing him, to give his sisters (ages 3 and 5) time to see him, say goodbye and understand that he was gone.

His visitation was lovely, as lovely as something so tragic can be. My husband and I were in our own home, so we were comfortable, able to retreat into our bedroom when we needed to, and there was no established time frame limiting visits. We spent two nights with him, saying goodbye, telling him all the things we wanted him to hear.

On Jan. 4 at 4:52 p.m. — the same time of day he was born — we buried James in our backyard with over 100 people in attendance. His presence there, in the yard where his sisters play, brings us comfort on some very dark days: Though his spirit is gone, his earthly remains are nearby. We visit him often, keep fresh flowers on his grave and have wind chimes in the maple that he’s buried beneath.

I hope that by writing this, I can help others realize that home burial is possible for their loved ones — all of them, not just children.

Complete Article HERE!

As family members dominate caregiving, outside support is hard to find

By Steven Ross Johnson

[N]early 9 out of 10 caregivers for older Americans are unpaid, and those individuals work longer hours and receive less government support than their paid counterparts, according to a new study.

Approximately 900,000 Medicare beneficiaries received support from 2.3 million caregivers in 2011, according to the study published Wednesday in Health Affairs. The study looked at data from Medicare beneficiaries who lived in community settings and died within one year of study enrollment.

That’s just the tip of the iceberg. In 2015, roughly 34 million Americans provided unpaid care to an adults age 50 or older in the last 12 months, according to figures from the National Alliance for Caregiving and AARP.

Unpaid end-of-life caregivers provide nearly double the hours of support per week compared to other caregivers, but they did not receive additional pay from government or private insurance, according to the Health Affairs study.

The study illustrated the heavy economic burden family caregivers can face when they provide end-of-life support and how the healthcare system relies on family members to take on that care, according to Katherine Ornstein, assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City and lead author of the study.

“We need to do more to make sure that our infrastructure is supporting (family caregiving) so that it can be done well and that the consequences for family members are not negative,” Ornstein said.

Medicare spending in 2011 on patients during their last six months of life accounted for 28% of the total $554 billion the program spent on healthcare that year, according to the Kaiser Family Foundation.

The value of unpaid care provided by friends or family members was valued at roughly $470 billion in 2013, according to the National Alliance for Caregiving and AARP.

Government and healthcare stakeholders can provide family caregivers with information and resources to help set and reschedule physician appointments, work with insurers or make care decisions to ease their burdens, Ornstein said.

Those resources could go a long way with spouse caregivers in particular. More than 42% of Medicare beneficiaries in the study received help from their spouses, according to Ornstein’s analysis. But nearly two-thirds of spouse caregivers reported that they received no support from family or friends.

Still, approximately half of Medicare beneficiaries received support from their daughters and one-third received help from their sons.

By comparison, 14% of study participants received caregiving support that wasn’t for end-of-life care from paid helpers and 20% secured paid help for end-of-life care, the study found.

Family dependence for end-of-life or aging care is only expected to rise as the elderly population will nearly double from 2012 to 2050, increasing to more than 83 million, according to the U.S. Census Bureau.

But family members and loved ones may not be able to meet those increasing care demands. A 2013 report by the AARP Public Policy Institute found that there were an average of about seven potential caregivers for every patient age 80 and older in 2010, but that ratio was expected to decrease to 4 to 1 by 2030 and to 3 to 1 by 2050.

Complete Article HERE!

Homeless and Dying in America

Facing the End of Life Alone

By Betty R. Ferrell, PhD, RN

As Homeless Persons Near the End of Life

[S]tatistics about the US homeless population are staggering. More than a million people face homelessness each year in the United States, and these individuals often have multiple complex illnesses and comorbid mental health conditions. Orchestrating care for the homeless population poses significant challenges.

Little is known about the end-of-life (EOL) experiences of homeless persons. A major gap in knowledge exists regarding the symptoms experienced by homeless persons at or near the EOL—information that would help clinicians not only manage these symptoms but also assist homeless persons with advance care planning and decision-making around death and dying.

To characterize these symptoms, Tobey and colleagues[1] surveyed homeless persons at a medical respite program who were approaching the EOL. The demographic data derived from this study speak to the distinct palliative care needs of the homeless. Sociodemographic data from this study, showing that 60% had substance use disorders and 85% abused alcohol, will greatly affect the provision of care for this population. All homeless patients interviewed reported experiencing pain, and psychosocial needs were equally significant. Nearly all (95%) of the sample had experienced the death of a loved one, 25% worried daily about their own mortality, and 75% worried that no one would even know that they had died.

Viewpoint

The palliative care needs of various subgroups of people with serious illnesses are well documented in the literature, providing data about the unique physical and psychosocial needs of patients across many diagnoses and clinical settings.[2,3,4] The study by Tobey and colleagues adds to the body of literature by describing the distinct needs of the homeless population. The findings of this study provide insight for clinicians and for health policy administrators to attempt to meet the challenging needs of the homeless.

The study’s design was commendable. Direct interviews with homeless persons helped to understand their unique needs during their last months of life. The use of a medical respite center serving the homeless provided an ideal environment for the study.

Although the study sample size was small, the findings are rich in meaning and have implications far beyond the medical respite unit where the study was conducted. These findings will also apply to the many diverse settings where homeless persons seek care: public hospitals, emergency departments or urgent care centers, Veterans Affairs hospitals, and other settings.[5,6] Continued research and clinical advances in the care of the homeless are obligations of palliative care, a field committed to comfort and respect for all patients.

Complete Article HERE!

People are choosing to die in their beds over a hospital

By David K. Li

[M]ore New Yorkers are choosing to spend the last moments of their life in the comfort of their own home — rather than a hospital bed.

The percentage of terminally ill Big Apple residents who pass away at home has been on the increase for the past eight years.

“It’s become understood it’s more comfortable to die at home,” said Arthur Caplan, director of medical ethics at NYU Langone Medical Center.

“It’s become acceptable to think and plan about dying at home.”

Back in 2007, just 18.9 percent of deceased New Yorkers passed away at in their own home, according to figures compiled by the city’s Department of Health & Mental Hygiene.

That figure has been climbing every year — reaching 23.4 percent in 2015, according to the most recent data available.

“I do think it’s a trend,” said Dr. Susan Cohen, section chief of palliative care at the NYU School of Medicine. “If we’re having the conversations that will offer [home death] as an option, they will take it.”

City hospitals still remains the most preferred the place to pass. But hospital deaths have been sliding down for years — from 51.4 percent in 2011 to 46.4 percent in 2015.

While city data doesn’t specify what ailment ultimately leads to home death, palliative care researchers and medical ethicists said that dying patients are choosing comfort over more medical treatment.

In addition, data on deaths at licensed hospices in the city has risen to 5 percent from just 1.8 percent in 2011.

It’s not clear to medical professional what might have changed patients minds about where they choose to live out their last days.

Cohen – who is also director of the Palliative Care Program at Bellevue Hospital – cited the American Board of Medical Specialties’ move in 2006 to formally recognize palliative care as an official specialty.

That recognition could have eased the concerns of patients and their families about the process.

Caplan traced roots of this die-at-home trend back to the 1980s and early 1990s when AIDS ravaged America’s gay community.

“HIV led to people re-think how to care for the dying. For a gay man (in that era) being in hospital was not a comfortable place to be,” Caplan said. “There was a stigma [in a hospital] but [at home] you could be surrounded by your loved ones and friends.”

Complete Article HERE!

California assisted suicide patients are mostly white, well-educated

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

[C]alifornia residents choosing legal assisted suicide are disproportionately white and well-educated, new figures show.

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

What Would Happen to Seniors in Nursing Homes Under the Republican Health Care Bill?

By Elizabeth O’Brien

[D]awn Burnfin’s 94-year-old grandmother recently had a massive stroke in a Missouri nursing home. She quickly recovered well enough to tell the end-of-life hospice workers caring for her to go home, since she had no plans to die.

But the Medicaid funds that help pay for her care are now up in the air.

“I don’t know where she would go,” Burnfin, 43, says of her grandmother, if she loses her bed in the nursing home. “It’s really scary.”

Included in the Better Care Reconciliation Act, the bill Senate Republicans have proposed to replace the Affordable Care Act, are an estimated $772 billion in federal cuts to Medicaid through 2026, plus a reduction in the funding formula that would sharply decrease spending beyond that. The nonpartisan Congressional Budget Office projected on Thursday that federal Medicaid spending in 2036 would be 35% less than under current law.

Proponents of the bill say the new Medicaid structure would increase states’ flexibility to design their Medicaid programs around the unique needs of their populations. But the proposed cuts have many like Burnfin wondering who will pay to keep her grandmother cared for?

While Medicaid is best known for insuring low-income Americans, the government program also provides a vital safety net to elderly Americans who need long-term care, either at home or in a facility. Medicaid covers about 60% of nursing home residents, and according to a 2015 study by Truven Health Analytics, roughly 2.2 million elderly Americans received Medicaid-financed long-term care in 2011. As more baby boomers reach older age, these numbers will only grow

Burnfin lives in Chisholm, Minn., not close enough to provide hands-on care to her grandmother, although though she has plenty of expertise: Burnfin herself works as a home care worker, providing in-home assistance to an elderly woman on Medicaid. Her own livelihood depends on the program’s health.

Medicaid is such an important safety net because Medicare, the federal health insurance program for those ages 65-plus, does not cover the kind of routine assistance that most elderly need: help with dressing, bathing, eating and other activities of daily living. According to government estimates, 70% of people turning 65 will eventually need such assistance in older age.

When it comes to finding—and financing—long-term care for older loved ones, most families are on their own. And many end up turning to Medicaid when their money runs out. It’s not hard to drain your life savings on nursing home care that runs around $82,000 per year but can go much higher in costlier areas of the country. To qualify for Medicaid for long-term care, applicants need to have depleted most of their resources. Criteria vary by state; in New York, for example, the asset limit is about $14,000, not including a certain amount of home equity.

Eligibility criteria would likely get even stricter under the Better Care Reconciliation Act, experts say. That’s because the bill would fundamentally change the entire Medicaid program, not just the parts affected by the ACA: it would switch Medicaid financing from an open-ended benefit to one that’s capped.

Instead of receiving increased federal funding to meet mounting needs—say, to fund opioid addiction treatment or to pay for a new breakthrough drug—beginning in 2020 states would receive a capped amount. This would represent “a transfer of risk, responsibility, and cost to the states of historic proportions,” according to a statement by the National Association of Medicaid Directors, a bipartisan organization representing leaders of state Medicaid agencies nationwide.

Spending caps would become even more harsh in 2025, when Medicaid spending could only rise each year with general inflation, which tends to lag medical inflation by several percentage points. “The bill’s Medicaid cuts are really about starving the program, and states won’t think about the long-term, they’ll think about surviving until the next year,” says Edwin Park, vice president for health policy at the Center on Budget and Policy Priorities.

Medicaid finances are already stretched, and there’s not that much fat to cut in the system. “It’s not like Medicaid systems have been rolling in cash under the current system, due to the need,” says Eric Carlson, a directing attorney in Justice in Aging, a nonprofit legal advocacy organization.

Nobody knows yet how states would respond to the cuts, but experts say all long-term care supports and services are vulnerable–that includes quality care in nursing homes for patients whose needs are best met in such facilities, and also in-home care for patients who can stay at home with assistance.

Among the limited choices states would have to cope with the cuts: they could restrict Medicaid eligibility, reduce the already-low payments Medicaid makes to medical providers, and reduce the number of services that Medicaid covers. In-home care is generally considered an optional benefit in state Medicaid programs, so it would likely be on the chopping block if the Senate bill becomes law. Nursing home care, by contrast, is considered mandatory. “What’s horrible about the bill is it will force institutionalization,” says Michael J. Amoruso, president-elect of the National Academy of Elder Law Attorneys and a practicing attorney in Rye Brook, N.Y. In other words, the bill would force older, vulnerable citizens out of their homes and into nursing facilities.

This week, Senate Majority Leader Mitch McConnell postponed the Senate’s vote on the bill until after the July 4 recess, hoping to shore up support. Burnfin agrees with critics who say the Senate’s actions are shortsighted. Keeping older patients at home for as long as possible not only increases their quality of life, it also generates economic activity in their communities, Burnfin says: the residents continue to pay property taxes on their homes and consume goods and services in their area. They also employ caregivers in greater numbers than nursing homes. The ratio of caregivers to care recipients is 1:1 at a patient’s home, but about 9:1 in a typical nursing home, Amoruso says.

Burnfin has an even more personal connection to Medicaid: her family is also insured through the program. She works full-time as the primary breadwinner for her family, but her income remains low enough that they qualify. Her husband is disabled, and the four of her children who live at home have complex medical needs. She worries for their future as well.

“We couldn’t survive without the Medicaid,” she says. “We just couldn’t.”

Complete Article HERE!