07/17/17

How to talk to children about death

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It’s not an easy topic, but being prepared with some answers can help.

Children learn about death at the 2016 Death Faire in Pittsboro, North Carolina.

When I die, I want to be burned. I don’t want any worms in my brain.”

“Wouldn’t it be awful to be alive when the world blows up? Everyone would die. I mean everyone.”

“Daddy, what’s a UN air strike?”

The quotes above come directly from my two adorable daughters, now age 5 and 7. It’s fair to say that of all the subjects I have discussed with them, death is perhaps the most challenging — and the most rewarding. That’s because preparing our children to think about and understand death, dying and their own mortality may be one of the most important responsibilities we have.

After all, we’re all going to die. Even if that feels an awfully long way off for many of us, the chances are that children will be exposed to death sooner rather than later in one form or another. With preparation, exposure to death or dying can be a productive opportunity for growth. Without it, it can be a deeply traumatizing experience that reenforces some of our culture’s most negative traits.

A few years ago, Caitlin Doughty — creator of the popular Ask A Mortician series on YouTube — offered a somber and heartfelt plea for less death-phobic parenting following the tragic school shooting in Sandy Hook, Connecticut. Among the advice she offered (I paraphrase):

Ask children what they know: By first gauging a child’s thoughts on death — or on a particular incident involving death — we can get a better sense of their level of understanding and begin to identify the concerns or worries they may have.

Be honest: If we don’t know the answer to something, it’s not our responsibility (nor is it advisable) to make something up. Instead, we can simply explain that we don’t know, but that we’re here to help work it out.

Protect, but don’t shelter: Just because we’re ready to talk openly and frankly about death does not mean we can’t still protect our children. In fact, by being ready to answer questions and share our experiences, we are better able to both “filter” what information our children receive and give them some context and tools for processing ideas or news they are exposed to elsewhere. Doughty strongly recommends protecting children from news “death porn” (her term), especially following tragedies like Sandy Hook.

You can watch a good introductory video from Ask a Mortician below:

Family culture matters

As someone who grew up in a half-Finnish family (Finns have a notoriously morbid sense of humor), it had never occurred to me to shield my children from death or dying. That’s probably a good thing, as both my father and my father-in-law were diagnosed with terminal cancer when my children were 1 and 3.

What I learned during that challenging time reinforces what Doughty says: Children are resilient, curious and well-equipped to explore the topics of death and dying, long before they’re ready to fully understand it (if any of us ever do). In fact, the biggest parenting challenges we faced when we were going though difficult times was not how we talked to our children, but how we managed the different and often conflicting messages about death that they receive from different sources.

How, for example, should a parent explain why one family member says “grandpa’s in heaven” while another doesn’t believe that heaven exists? How do you prepare your children to deal with friends or family members who may be less willing to talk about these difficult topics? What do you tell children about talking to other kids about death? Or how do you prepare them for what kids might tell them?

Ultimately, there are no simple answers to any of these questions. After all, death remains both a challenge and a mystery for adults, too. But starting children on the journey to understanding early will give them the confidence and the curiosity they’ll need to confront mortality in a healthy, open-minded and compassionate way.

And as this second video proves, just know that when you talk to kids about death, things can get pretty dark:

Complete Article HERE!

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07/16/17

The Professionals Who Want to Help You Plan Your Death

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When 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!

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07/15/17

The long goodbye: Home burial can bring comfort

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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!

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07/14/17

We’re making it too hard to have a ‘good’ death

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By Joshua A. Rolnick, David A. Asch, and Scott D. Halpern

More and more Americans say they want a “good” death, which usually means dying peacefully at home, surrounded by loved ones. Documents called advance directives can help them achieve that goal by increasing the chances that the care they receive near life’s end aligns with their goals and values. Unfortunately, advance directives have been mired by legalities that limit their utility and even discourage their use. It’s time for that to change.

Although most Americans say they prefer to emphasize comfort when they’re near death, aggressive treatment remains the norm in American health care. In the last month of life, half of all Medicare patients visit an emergency room, one-third are admitted to an intensive care unit, and many have surgery. Ironically, this disconnect between what people want and what they often get is facilitated by well-meaning but misguided laws governing the completion of advance directives.

Advance directives have two parts. The first is a living will that spells out an individual’s wishes for end-of-life care. It might say, for example, whether or not she wants to be placed on a ventilator, or, perhaps more importantly, what types of health states she would consider to be intolerable. The second part is a health care power of attorney that specifies the individual’s chosen decision-maker. By law, advance directives usually require the signatures of two witnesses or a notary, with specific rules varying by state. In some states, approved templates drafted by lawmakers — not clinicians — are the preferred ones.

Only one-third of Americans with advanced illnesses have advance directives, as we found in a recent systematic review in the journal Health Affairs. At the hospitals in Philadelphia where we work, seriously ill patients rarely have directives in their medical chart. For a research study, one of us (S.D.H.) screened more than 9,000 patients at dozens of clinics across Pennsylvania who were expected to live less than two years, and found that only 2 percent had advance directives in their medical records.

Sometimes the documents remain home in a drawer, unavailable to family members and physicians as they gather in the hospital to make decisions. But even when they are available, they often give poor guidance about an individual’s true wishes. As we argue in a recent article in the New England Journal of Medicine, each of these failures can be traced, in part, to the law.

It may seem intuitive that something as important as an advance directive should receive special legal protections, but experience reveals the opposite.

First, laws make advance directives harder to complete. An individual can sign a consent form authorizing major surgery during any doctor’s visit, but can’t create an advance directive unless accompanied by two witnesses or a notary. This need for witnesses or notarization seems to reduce the likelihood that seriously ill individuals who want to complete an advance directive will ultimately do so.

Second, the barriers to creating advance directives also make them more difficult to change. That can make the living will nearly immutable, even though end-of-life goals often evolve with experience and circumstances.

Third, outdated laws regarding advance directives may prevent us from leveraging newer technologies to improve care. We and others have developed web-based platforms that facilitate the completion of advance directives and their integration into electronic medical records. Yet these platforms typically require written signatures rather than electronic ones so the document aligns with state laws. That’s a problem. After one of our own family members — a 99-year-old man who recently moved to an assisted living facility — completed an advance directive online, he was frustrated to learn he then had to print it out, sign it, obtain the signatures of witnesses, and scan it back in. As we found in another recently completed randomized trial, only 25 percent of people who completed an advance directive online subsequently obtained the written signatures on a printed form so the document would satisfy state laws.

Finally, the current rules around completing advance directives shift the process from the doctor’s office to the lawyer’s. That doesn’t make sense. Far more people have doctors than lawyers; they see doctors as more relevant to these decisions than lawyers; and the cost of a visit to the doctor might be covered by insurance, but a visit to a lawyer won’t.

Soliciting the advice of a lawyer to complete what is fundamentally a medical directive is like getting advice from your doctor about completing your taxes.

An advance directive must incorporate a nuanced understanding of an individual’s medical history, treatment options, and foreseeable setbacks, which only a clinician can provide. Further, completing a directive in a doctor’s office helps ensure that the form is accessible in the person’s medical chart. And when people are dying and their circumstances come into sharp focus, they are typically with their doctor, not their lawyer.

Lawyers may argue that extra legal protections around advance directives prevent fraud and send a clear signal to courts. Yet there is no evidence that witnesses or notaries reduce fraud. And it is rare for an advance directive to trigger a lawsuit — our large medical centers haven’t had such a case in at least 20 years. In any event, courts frequently adjudicate disputes over medical care without the benefit of notarized documents, and are equipped to do so whether the subject is end-of-life care or another matter.

The good news is that reform requires little effort. Advance directives are controlled by state law. We urge states to make three minor modifications:

  • Eliminate requirements for witnessing and notaries. After all, we don’t require them for other high-stakes medical decisions.
  • Clarify that electronic signatures and non-statutory forms are valid, just as they are allowed for other important documents.
  • Minimize differences between states. An individual’s wishes for end-of-life care don’t change because he moves from Arizona to Maine.

With modest changes to well-intended but counterproductive laws, advance directives may help give people the voice that they and their family members deserve near the end of life.

Complete Article HERE!

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07/13/17

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

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By Steven Ross Johnson

Nearly 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!

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07/12/17

Homeless and Dying in America

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Facing the End of Life Alone

By Betty R. Ferrell, PhD, RN

As Homeless Persons Near the End of Life

Statistics 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!

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07/11/17

People are choosing to die in their beds over a hospital

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By David K. Li

More 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!

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