Category: Dying Wisely and Well

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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!

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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.

By Hattie Xu

[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!

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The deaths that changed my life

A palliative care specialist reveals what she’s learnt

[W]ith two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments

 
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.

If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.

At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.

Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.

Closure is important

The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.

Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.

Adrienne Betteley

Don’t let fear stop you

When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.

I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.

The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.

Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.

Adrienne Betteley couldn’t face visiting her grandmother in a hospice

Trust a professional

My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.

I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.

I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.

Focus on pain relief

While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.

I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.

Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?

She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.

Communication is key

My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.

It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.

Adrienne Betteley’s late father-in-law, Dennis

As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.

Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.

If he had been given an informed choice about treatment, I’m sure things could have been different.

Say goodbye the right way

A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.

Adrienne Betteley’s late mother

A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.

Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.

Complete Article HERE!

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This Startup Wants to Make End-of-Life Care Easier and More Compassionate

 

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[M]aggie Norris endured two significant family deaths just six years apart. First, her stepfather was diagnosed with bladder cancer, which spread to his lungs and his brain. He passed away in 2008. Then, her biological father was diagnosed with lung cancer, which metastasized to his spine. He died in 2014.

Caring for her biological father and her stepfather before their deaths meant that she, her sister and her mother had to put their lives on hold. Caring for them meant everything from bathing and administering medications to planning meals and overseeing care, all of which she said amounted to a full-time job. While her stepfather was more forthcoming about his illness, her father was not as open about his, which led to Norris and her sister not finding out about his prognosis until things had gotten difficult.

In between all of this, Norris said her family conducted research in order to understand the illnesses. It was not clear how these conditions would progress or what they should do to ensure the best care was provided.

“He didn’t openly talk about it with family or his primary oncologist, so by the time we found out he was really in a tough spot,” Norris said, referring to her biological father. “What people don’t understand is death is a process. It doesn’t happen in a day or a week. It is over the course of several months or several years. It’s an emotionally and situationally really complex to navigate.”

An idea emerged in the aftermath of her grief. What if there was a way to making end-of-life planning easier? How can discussing advanced care be simplified in a way that keeps family members, medical professionals and other stakeholders in the loop? Those questions led her to create After, an end-of-life planning software that provides informational healthcare videos, organizes key legal and healthcare-related forms, and coordinates end-of-life care requests with stakeholders involved in patients’ healthcare decisions. Norris founded the company in January 2017 and is preparing for a soft launch this August.

The software features animated videos that walk patients through what to expect with their diagnosis for the most common causes of death including cancer, heart disease, Alzheimer’s, chronic lower respiratory disease, diabetes and stroke. It also allows patients to organize their advance care planning and power of attorney information. But what distinguishes the software, Norris said, is its personalized, compassionate questions regarding how the patient wants to spend their last length of time.

“No one likes talking about death and dying, even if it’s your job to have conversations with patients about death and dying,” Norris said. “A lot of times physicians wait for families and patients to come to them with questions. The problem with that is the first stage of grief is denial.”

Norris is in the process of determining where to best place her software. It’s a natural fit for the healthcare industry, but she said she could also see the software being applied by lawyers and financial planners, or pharmacist. Navigating bureaucratic hospital systems and healthcare laws could also be tough for the company going forward, she added.

Still, Norris is aiming to provide vulnerable patients with a way to regain control over their final moments and initiate the uncomfortable, yet necessary conversations surrounding death.

“How do you make this conversation happen more often and easier and more accessible?” Norris said. “There’s this empty space there, and we’re trying to fill it with software.”

Complete Article HERE!

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Navigating the end of the road

Death doulas offer education, support to those seeking alternative options while dying or grieving

A screenshot of a video documenting a home funeral shows family members visiting their deceased loved on in a home setting. The video was produced by Lee Emmert and the University of Oregon’s School of Journalism and Communications Department.

By Courtney Vaughn

[W]hen both of her parents died six weeks apart, Nancy Ward had to confront death in a profound way.

She was lucky, sort of. Her parents had prearranged for their care after their deaths, but Ward recalls being uneasy with the post-mortem process when her father died of congestive heart failure.

“Up until this point, I had never seen a dead body because I was about as death-phobic as they come,” Ward says. “A man came into the room, he looked about 14, and unrolled a black plastic body bag on the gurney. I’m going, ‘Oh my God. This man was just living and breathing and now you’re gonna put him in a black plastic bag and do what?’ Put him out on the curb for waste management to pick up?”

Ward succinctly recalls the emotional sterility of the situation.

Nancy Ward

“This doesn’t feel right, this doesn’t feel good, it doesn’t feel loving, or respectful,” she thought to herself. “He doesn’t know my father. I know my father.”

Six weeks later, her mother died.

“I knew what was coming and didn’t like it, but I had nothing to replace it with,” Ward says.

Afterward, she became a death midwife, or “death doula” as some call it, availing herself to others so they didn’t have to go through the same process she did with her parents.

Ward is now used to confronting death. In fact, she and others have made a living out of it.

A few years ago, Ward and other colleagues in the death directives industry teamed up to form the End of Life Care Collaborative. Members help educate and guide people in their quest for home funerals and other self-directed death practices.

The group focuses on serving those who are dealing with the death of a loved one, or preparing for their own death.

Services range from home funeral preparation and arrangements, to help with navigating the traditional funeral process, to emotional and practical support for those delving into the end of their own lives, and a gamut of other services to serve those confronting death.

The ultimate goal, members say, is to help people achieve greater meaning, or a more comfortable process around dealing with death and accepting loss. To get there, clients must be willing to shake off some of the cultural stigma of death.

“As a society, we aren’t comfortable with dealing with death because it reminds us of our own mortality,” Ward says. “We think everybody should know what their options are and right now, they don’t. We’re trying to reach the people who want it done differently but don’t know what different looks like.”

Ward and the collaborative team help educate people on what their options are for preserving a loved one at home after they’ve died, or bringing the body of a loved one home if they choose.

Ward says most members of the collaborative try to operate on a sliding-scale fee system, to make sure no one is turned away because of finances.

“We all have different areas we like to focus on and that’s what makes the collaborative so important,” she says. “We can do everything from the totally esoteric to the toally practical.”

That means being a listener and helpful guide, or doing a load of laundry or providing a meal for a grieving household.

She points to a recent client she worked with- a woman dying of cancer- who wanted to be prepared when her final moments came, but more importantly, wanted to rely less on her family for her physical and emotional needs.

“She said, ‘my family is having a really hard time with this …I don’t want to burden them with my own questions and expressions, this is what I need you for,'” Ward recalls.

“Their psychological and emotional needs are unmet,” Ward says of many terminally ill patients. “My involvement is just simply working with the person on a psychological, spiritual, emotional level.”

Members of the collaborative are not isolated in their quest to provide resources and support for death directives, but their services aren’t widely available, or even widely culturally accepted.

Asher Wallis

“I have seen a good deal of anxiety arise from family members who are trying, in the midst of disorienting grief, to figure out what their loved ones, who had not planned logistically or financially for the events that would follow their death, would have wanted,'” Asher Wallis, an End of Life Care Collaborative member and grief counselor, explains.

He attributes some of the sources of that unnecessary stress to “culturally sanctioned misinformation about the physiological and psychological nature of dying such that both the family caregivers and the dying person think they are doing it wrong.”

Deborah Threadgill, a collaborative member who is also a certified funeral director, says the End of Life Care Collaborative focuses on making “everything family-directed,” meaning they never suggest or push services on clients. Rather, they try to educate them on their full range of options surrounding death and dying.

“We take something that is very, very traumatic in our society and taboo and make it something natural and beautiful,” she says.

Complete Article HERE!

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Poet ponders life on the brink of death

Nina Riggs pens rhapsodic memoir about living with terminal cancer

By Anjali Enjeti

That a writer with only months to live could carve out the time and energy to chronicle her experience of terminal cancer is an impressive feat. That a writer could accomplish this with such exuberant prose as Nina Riggs does in her debut memoir, “The Bright Hour: A Memoir of Living and Dying,” is revelatory. The book, birthed after Riggs’ 2016 essay, “A Couch is More Than a Couch,” which appeared in the New York Times column, Modern Love, captures vivid, dynamic moments, searing truths, bitter ironies and every delicate emotion in between.

Riggs’ great-great-great grandfather, Ralph Waldo Emerson, inspired the book’s title. “That is morning; to crease for a bright hour to be a prisoner of this, sickly body and to become as large as the World.” Riggs, who published a book of poetry in 2009 entitled “Lucky, Lucky,” was a great admirer of her literary ancestor. One particular phrase, “the universe is fluid and volatile,” in her favorite essay of his, “Circles,” helps her to wrap her mind around the parameters of her own mortality. “It allows for the idea that there are things that cannot be contained,” she writes.

Among her most referenced authors in “The Bright Hour,” though, is the 16th century French philosopher Michel de Montaigne, whose five out of six daughters, brother and best friend died prematurely. Montaigne ponders the weight of this kind of grief, and in him, Riggs finds a kind of kinship.

“I love about Montaigne that, despite roving bands of thieves and constant political upheaval, he reportedly never kept his castle guarded. He left all his doors unlocked. He acknowledged the terror that could come. But by considering it and allowing it in, he resolved to live with its presence.”

Riggs’ love of words was fervent, unbridled. She was a scrupulous linguist. The tones and the distinct sounds of syllables aroused in her a deep reflection.

“But the more I think about it, the more I’m struck by what a beautiful word it is – hospice,” she writes. “It is hushed, especially at the end. But it’s comfortable and competent sounding, too. A French word with Latin roots – very close to hospital but with so much more serenity due to those S sounds. (You see, I am growing increasingly fond of the letter S.)”

Her brief, melodic chapters, many only a page long, straddle the genres of prose and poetry, much like Emerson’s do.

Last year, Paul Kalanithi published “When Breath Becomes Air,” a memoir about living with terminal lung cancer. Kalanithi died at age 37, and like Riggs, lived for only approximately two years after his terminal diagnosis. Kalanithi’s book has been widely praised; Riggs herself deemed it “gorgeous.” “The Bright Hour” equals “Breath” in clarity, nuance and artistry. Like Kalanithi, Riggs makes acute examinations of the gradations of autonomy and agency while in treatment, and the ways in which relationships grow and reshape themselves in the face of a finite timeline.

Nina Riggs

“The Bright Hour” is also a precise study of how chronic and terminal illness affects members of the family. Early in the book, at a time when Riggs’ own cancer appears to be a relatively self-contained disease and her prognosis is good (“one small spot,” Riggs repeats like a comforting mantra), Riggs’ mother Jan is in treatment for terminal multiple myeloma. Riggs spends her time in between chemo infusions taking care of Jan. When Jan refuses further treatment, sorrow washes over Riggs. “See: She is dying,” she writes. “It is weird to write that – like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her. Eight years of cancer… My mom: my map, my Sistine Chapel, my ‘Lonely Planet,’ my beautiful ruin, my volcano.”

And it’s Riggs’ mother who, in many respects, models for her daughter the kind of perspective that Riggs later adapts when she learns that her own cancer is metastatic and incurable. “‘Dying isn’t the end of the world,’ my mother liked to joke after she was diagnosed as terminal…There are so many things that are worse than death: old grudges, a lack of self-awareness, severe constipation, no sense of humor, the grimace on your husband’s face as he empties your surgical drain into the measuring cup.”

Riggs was a wife and mother of two young sons, and as her illness progresses, she contemplates, keenly, the beauty and ferocity of the love she has for them. “When you fall in love with your kids, you fall in love forever. And that love forms the exact shape in the world of the cab of a beat-up pickup on the side of the dark highway – filled with safety and Stevie Wonder and okay-ness.” With her dear friend who is also parenting young children while living with terminal cancer, she exchanges hilarious texts about how they might monitor their children from the grave, as if “dying makes us more powerful parents than the living version of ourselves.”

Ultimately, this is Riggs’ magic. She has produced a work about dying that evokes whimsy and joy, one that sublimely affirms that the inevitability of death carries with it its own kind of light and grace. “We are breathless but we love the days,” she writes. “They are promises.”

Complete Article HERE!

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Helping Hands Offer Support at the End of Life

A growing network of ‘death doulas’ is gaining popularity while caring for patients and their families.

By Mary Kane

[E]lena Wertheimer still remembers the panic she felt last year after her terminally ill father, Vincent Battista, was released from the hospital to spend his last days at his Wyckoff, N.J., home. She didn’t know how to prepare. She wasn’t sure how to care for him—or herself. “It’s hard to think straight,” she says. “You’re under extreme stress.”

On the advice of friends, Wertheimer sought help from an end-of-life doula, a new type of caregiver for dying patients and their families. Also known as death doulas, they offer support through all the stages of dying, similar to the roles that birth doulas play during pregnancy and delivery. Doulas discuss a dying person’s wishes and concerns, and they create memory books for the family. They organize vigils and coach relatives on the signs of dying. Some run errands, organize paperwork or even plan home funerals.

Wertheimer, 49, was very close to her father, and her doula, Janie Rakow, helped her overcome her fear of watching him die. Rakow encouraged her to sit with him and hold his hand. Rakow gently guided her to his bedside after he passed, and Wertheimer and other family members spent four hours there, crying, laughing and telling stories. Rakow ensured they weren’t interrupted. “It was very, very special,” Wertheimer says. “I saw him finally not suffering. My last vision of him was peaceful. It made all the difference in the world.”

Doulas are gaining in popularity amid a growing effort to improve the end-of-life experience for patients and families, particularly when someone dies at home. Doulas cover “a huge gap” in time and resources that busy hospices can’t always provide, Rakow says. A hospice team advises families on medical care for the dying; doulas guide the dying and their loved ones through the end-of-life process, offering mostly emotional and other nonmedical support.

Finding a Doula

If you’re thinking of using a doula, you may find the search confusing. There are death midwives, mourning doulas, death coaches and more. Some are volunteers; others charge hourly rates of $25 to $100 or offer “Vigil Packages” costing $1,000 and up. There is no regulatory oversight or standard licensing, training or certification. “It’s still kind of the Wild West out there,” says Patti Urban, a doula in Guilford, Conn.

Insurance typically doesn’t cover costs for a doula. Before hiring one, check whether your local hospital or hospice has a volunteer doula program. But be sure the doula can provide all the hours you want.

The International End of Life Doula Association (www.inelda.org) is compiling an online state-by-state directory of doulas it has trained. The nonprofit has provided the training for hospitals and hospices in California, Indiana, New Jersey and New York, and it will train aspiring doulas in 12 cities this year, says Rakow, the association’s president. Doulas will also work with you in hospices, hospitals, assisted-living facilities and nursing homes.

Decide what you want from a doula. Do you need someone to organize end-of-life documents? Or to provide a 24-hour presence at the bedside? Set up a consultation, advises Merilynne Rush, co-founder of the Lifespan Doula Association, in Ann Arbor, Mich. Be sure your doula’s personality is a good fit. You might prefer a take-charge attitude or a soothing presence.

Most doulas charge an hourly rate. Start out with a few hours before making a larger commitment, Rush says. Ask for a contract spelling out services and fees.

Review a doula’s qualifications and training, including criminal background checks and previous experience. Some attend weekend seminars, while others serve a minimum number of vigil hours and pass exams to become certified.

Other groups that train doulas include MourningDoula.com and the Lifespan Doula Association, which details standards of practice at www.lifespandoulas.com. Doulagivers.com offers a free webinar to learn the basics of caring for a dying loved one.

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