The Dignified Exit

The Inevitable: Dispatches on the Right to Die

By Elena Saavedra Buckley

AS MEDICAL AND technological advances have made our world safer, it’s become much harder to kill oneself painlessly, even if one intends to. Asphyxiation by carbon monoxide, usually done by inhaling car exhaust in an enclosed garage, has gotten harder as the automobile industry’s emissions levels lower over time. Ovens have followed a similar trend, with natural gas models outplacing those that run on coal. The shift is especially true when it comes to medications. Use of Nembutal, the barbiturate that killed Marilyn Monroe, declined in the second half of the 20th century and was eventually discontinued in the United States, leaving available fewer substances that can cause a nonviolent overdose. (Other lethal medications have multiplied in price, sometimes threefold or more.) For those who desire “rational” suicide — done after consideration rather than, as is more typical, spontaneous despair — options are limited outside uncertain and gory methods. We live more protected lives than we once did, but, in exchange, the ability to end our lives peacefully is kept out of reach, like a bottle of recalled pills.

The subjects in Katie Engelhart’s essential, vulnerable book, The Inevitable: Dispatches on the Right to Die, question these barriers. Since the mid-20th century, conversations on assisted suicide have grown, as laws allowing it have passed around the world. In popular conversation, Engelhart writes, people who use assisted death usually fit an archetype: elderly, secular, white people, with terminal diseases and supportive families, take advantage of rare right-to-die laws soon before their likely natural death. They throw back a lethal cocktail of liquid drugs under the watch of a doctor and their loved ones. They fall asleep, and, within a few hours, their heart stops. “While most reporting about the so-called right to die ends at the margins of the law, there are other stories playing out beyond them,” Engelhart writes. “Didn’t I know that whenever the law falls short, people find a way?”

Engelhart, a former reporter for VICE and NBC News, profiles two rogue doctors and four subjects who seek assisted death in a variety of illicit shades: an elderly British woman who feels she has lived the life she wants; an American woman in her 30s with worsening multiple sclerosis; an American woman sinking into dementia’s abyss; and a 25-year-old Canadian man with complicated, severe depression. Engelhart profiles them as they either seek help with suicide, through mail-order chemicals or services overseas, or challenge the limits of their country’s laws. Engelhart is ever thoughtful; the approach can fall flat during meetings with secondary doctors or interviews with philosophers (summoning more than one description of office shelving), but Engelhart’s main portraits, and her careful relationships with her subjects, powerfully animate her central questions: what is dignity, and what does it mean to die with it?

As she chases dignity’s meaning, Engelhart meets early dead ends. Some of her interviewees brush off the question, saying that dignity amounts to feeling respected, making their own choices, and, mostly, being able to wipe their own asses. (“When someone has to change my diaper, I don’t want to live.”) But if dignity can be understood at an individual level, it is twisted by the systemic factors Engelhart describes that lead to death wishes: the specter of melancholic senior living facilities, unsuccessful mental health treatments, and impossibly expensive health care. The Inevitable is international in scope, but these pressures loom largest in the American medical system. When visiting Brussels, Belgium, Engelhart speaks to Wim Distelmans, an oncologist and euthanasia proponent, about whether assisted death should be offered to more people in the United States. “It’s a developing country,” he tells her. “You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.” A reader wonders, then, what it means to assert dignity within circumstances that do not do the same.

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Voluntary euthanasia may appear in Thomas More’s vision of Utopia, but doctors have long struggled to write it into their job descriptions. In 1995, the American Medical Association stated that “[p]hysician-assisted suicide is fundamentally incompatible with the physician’s role as healer,” and the National Hospice and Palliative Care Organization opposes the practice. The membrane between palliative care and assisted suicide is thin, though — in some cases, tending to fading life with pain-relieving drugs functions as a kind of assisted death, albeit a slow one. Engelhart roots this dissonance in the 20th century’s effort “to conceptually transform old age from a natural phase of life into a stage of disease,” she writes, “and, by extension, something to be defeated, rather than embodied or endured.”

Assisted suicide has been legal in Switzerland since 1940, and some other European countries, like Belgium, have allowed it since the 1990s. (Parts of Australia and Canada allow it, too.) Its American history is piecemeal. As health-care prices climbed sharply in the 1970s and ’80s, a string of high-profile cases of young white women on life support drummed up public conversation. Then, in 1994, Oregon became the first state to legalize assisted death. Other states followed Oregon’s strict parameters: a patient must be terminally ill and have six months or less to live, and they must have the mental capacity to make the decision, as determined by a doctor. On their chosen deathbed, a doctor will give them the lethal barbiturate, but they must lift it to their own mouth in a final, performative gesture of agency.

Opponents of assisted death have long argued that the practice will fall down a slippery slope of exploitation. Poor patients and the elderly, critics say, will feel pressured to die rather than rack up medical costs for their families. People with depression will choose it over trying more treatments. Historically, voluntary euthanasia and eugenics attract similar supporters, and today, some disability rights groups warn that the practices are “fatally tangled.” (One doctor Engelhart speaks with wants to create machines that can provide assisted death more easily than drugs; he sheepishly describes one of his coffin-like prototypes as “a little Auschwitzy.”) So far, though, there is no evidence from Oregon or other states that the laws have caused disproportionate deaths in any demographics. In fact, the opposite might be true. Engelhart spoke to doctors who knew of patients who qualified under the laws, and who wanted to die, but who could not afford the drugs. “Poor patients sometimes had to live,” she writes, “while richer patients got to die.”

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Like much great narrative journalism, The Inevitable powerfully justifies its form when mapping how people relate to each other outside dominant systems — in this case, how end-of-life care can exist away from, or in opposition to, big medicine. Beyond trickster doctors like Jack Kevorkian — the American pathologist, dubbed “Doctor Death,” who in the 1990s turned assisting suicides into a kind of civil disobedience — barely underground networks have offered assisted death to people who don’t meet the law’s eligibility. One of Engelhart’s subjects, Debra, is a widow in Oregon who does not want to fully succumb to her dementia. She ends her life before that happens with the help of the Final Exit Network, a group of volunteers who instruct the elderly on how to commit suicide and accompany them through it. When she is ready, two volunteers arrive at her house, hug her, and kneel next to her wheelchair while she uses a plastic bag and gas canister to stop her own breathing. Even with its analog methods, this moment feels dignified, closer to what care should look like — especially when put into relief by the police who show up to her door some hours later.

Other narratives are murkier. A woman named Maia, the only main subject from the book who is still alive, speaks with Engelhart while working through the decision to schedule her death at a clinic in Basel, Switzerland, seeking relief from multiple sclerosis. Maia is slowly and painfully approaching paralysis. “I believe the soul travels on and wants to be free from this prison that has become my body,” she wrote in her application to the clinic. Maia felt early, undiagnosed symptoms of her MS in her 20s, but, following the advice of her father, she hoped for the best and declined treatment. Once the debilitation became obvious, she wondered whether those early treatments would have prevented the disease’s severe progression. The future she is left with will require constant assistance and treatments. In the United States, it will send her into poverty. (She unsuccessfully attempts the most American of options: a GoFundMe for medical expenses.) Maia is sure of her plan, but she seems consumed by wondering whether she could have lived a different life or whether she has suffered enough to end the one she has. Even with her Swiss appointment, she closely follows right-to-die bills in the United States. “On an idealistic level,” she tells Engelhart, “I’m obsessed with dying in my own country.”

For Maia, it seems, dying in the United States would be a kind of acknowledgment, an agreement that her country shares responsibility for her distress. The Inevitable is interested in dignity and how people define it, but it does not ask so explicitly whether the state, and the laws it creates, can recognize people’s dignity in the first place. If our systems of governance fail to care for so many — and kill others on death row and in the streets — can they be trusted to control the choice to die? If a “developing country” without universal health care did offer wide access to assisted death, one wonders whether its use could make that country’s ills more obvious, more urgent, less ignorable. When The Inevitable snaps back to the perspectives of its individual subjects, the implications of these political threads can get lost; the perspectives of nonwhite patients, or people who harbor more doubt in the medical system from the get-go, are also mostly absent from the narrative. Still, the book’s brilliance is in how much fertile ground it lays for these questions.

Near the end of The Inevitable, Engelhart profiles Philip Nitschke, an Australian doctor who has become one of the most vocal supporters of the unrestricted right to die. Nitschke founded Exit International, another organization like Final Exit Network. His is far more boundless than others; they sell The Peaceful Pill Handbook (2006) to almost anyone with instructions for safe suicide methods, and Nitschke gives public “DIY death seminars” with his wife’s help. He is at the radical end of the book’s spectrum, yet after the rigid patterns of death barely evaded by Engelhart’s subjects, his beliefs appear risky but benevolently imaginative.

When Nitschke started his career, he only accepted assisted death on a limited scale. But as he met the kind of people who could be in The Inevitable: Dispatches on the Right to Die — a taxi driver with stomach cancer, for one, who died painfully without the legal right to die — these limits dissolved rapidly. What did age have to do with it, really? And, more than that, if physical pain was an acceptable reason to end one’s life, shouldn’t mental pain be, too? Doctors and lawmakers, he came to believe, couldn’t pick and choose. There was simply too much gray area. “Philip came to think that efforts to suppress rational suicide were ‘a sign of an increasingly sick society,’” Katie Engelhart writes. “They were a sign that, maybe, society wasn’t so confident in its reasons for insisting on life.”

Complete Article HERE!

What is right to die?

‘The End’ central character depicts reality of dying with dignity

Harriet Walter as Edie and Frances O’Connor as Kate in ‘The End’

The End’ talks about euthanasia and why it might be really important for people who want to die with dignity

By Aayush Sharma

‘The End’ is an Australian TV series that talks about euthanasia, gender identity and more in a quirky manner. It follows three generations of a family trying to navigate through life while facing obstacles at different points of their lives. The show mainly focuses on Edie (Harriet Walter), a woman who has lived the last decade in complete misery and doesn’t want to live anymore. On the other hand, her daughter, Kate (Frances O’Connor), is a doctor in Australia who specializes in palliative care.

Edie hasn’t seen her grandchildren in many years and believes that she doesn’t have any will to live now. She is one of those who advocate ‘euthanasia’. According to her, everyone should be allowed to die when they feel like they can’t take it anymore.

The most important aspect of the story is that it is not superficial at all. It is based on real-life experiences where we have seen people fighting for euthanasia and demanding that they should be allowed to decide when they want to end their life.

Harriet Walter and Frances O’Connor in ‘The End’

What is right to die and why Edie wants to end her life?

‘Right to Die’ is a concept based on the opinion that human beings are entitled to end their life or undergo voluntary euthanasia. Voluntary euthanasia is conducted with consent. It is understood that a person with a terminal illness, incurable pain, or without the will to continue living, should be allowed to end their own life by using assisted suicide or to decline life-prolonging treatment.

However, there is always a debate as to who is empowered enough to assist in such matters. Showrunner Samantha Strauss has worked beautifully to portray this issue in a quirky manner. The show mainly follows Edie (Harriet Walter) trying to end her own life. When a log rolls from the fireplace and prematurely sets her house ablaze, Edie decides to jump from her house’s window and end everything. However, Edie survives and suffers injury on her left arm. She believes that if someone is competent to decide, nobody other than that patient should have the authority to decide whether life is worth continuing.

Belinda Teh Walks from Kings Park to the WA Parliament with Euthanasia advocates on August 6, 2019, in Perth, Australia

The attempt forces her daughter to move her mother from England to Australia to keep an eye on her. During one of the scenes, we get to know that she is a survivor of breast cancer and she has also had a double mastectomy. As soon as she is relocated to a retirement village in Australia, we get to know that there are many who want to die with dignity and not suffer in pain.

This is the entire crux of the situation: the right to die with dignity. In one of the scenes, a character on the show blames the hospitals for making people like them “cash cows”. He also says that the hospitals put them in misery so that they can make money out of it.

Youssef Cohen, 68, sits while undergoing cancer treatment as his wife Lindsay Wright looks on, on March 17, 2016, in New York City

The decision about whether to continue living in such conditions is among the most important that can be made. Many patients in a persistent vegetative state or else in chronic illness, do not want to be a burden on their family members.

Furthermore, the right to die with dignity is not an ordinary law. It is not a right granted to someone to kill, but it should be seen as an option for a conscious and free person to be understood and helped in a special request that is to end his or her life.

As far as the show is concerned, the idea of euthanasia is something that you would feel conflicted about. However, to Edie, it doesn’t. She feels that rather than going to a retirement village and die while being in suffering would be much worse than taking her own when she knows that it is time. This is not something that most people will understand, but as you watch the show you’ll also realize that it tackles the issue of the right to live as well. When Edie is confident that she wants to end her life, in the process, she also gets to know why living is important.

Let’s just say that ‘The End’ might be one of the most important shows of our times and tells the world about people in suffering.

‘The End’ premieres exclusively on Showtime on Sunday at 8 pm ET.

Complete Article HERE!

Planning for death can bring peace of mind

By: Cynthia Breadner

“All that lives must die, passing through nature to eternity.”
William Shakespeare, Hamlet, Act 1, Scene 2

Today is a day of earned celebration as Italy takes home the cup for their big win playing soccer, or as it is called elsewhere “football”. As I watch the news recounting the celebrations, it is with joy I watched people together in community with a common goal to be celebrating and sharing the love of a sport or activity. Being alone, or solo is not how we are meant to be. We are social beings and in the animal kingdom, this is evident when all things gather.

That said, as the pandemic has continued, our ability to watch or stream online programming at home offers so much entertainment people may not notice they are alone! One can feel they have friends when watching three, four, five, or even 10 seasons of a program all in one swoop. The characters become your friends. I remember a fantasy movie from my childhood or youth, where a person is standing before a wall of screens and has a script in their hand. They are an actor in a drama from their own living room. That is all I remember and if anyone can identify this drama, I would love to know the name of it. Regardless of that, our choices of entertainment with the addition of NetFlix, Amazon Prime, CTV streaming, GlobalTV streaming, and CBC GEM no one can say they are bored. The world is one’s oyster searching for that pearl of enjoyment. Is this good? I am unsure. Entertaining, yes! Good? My jury is still out.

One of the downsides to so much viewing entertainment, I find my body is stiff. My back and sit muscles sometimes feel the stress of sitting in one place for too long. Evidence that I watch too much! However, I wonder what else can I do in a time where we are constantly threatened and reminded to keep our distance. It seems we are pushed into a solitary life. The chair where I sit has become my friend and my place of comfort and a companion that feels safe and easy. This action in my life is a reminder of when my mom died, and we cleaned out the house where she had lived for over 40 years. I took the sofa she had purchased recently for my own new apartment. I had lived in one room with a bed, out of my car, and transient for a few years going to school and ended it with staying with her in my childhood home, providing companionship and care. In the fall of 2009, I was heading to Toronto to begin the Masters program and as a family, we decided to prepare mom for a move into formal care in the fall when I moved to the city. I was 50 years old that summer and, with grown adult children, was quite alone in the world. As the youngest child of my mother, I was the only one able to live with her and not leave others alone at home. My self-discovery in this journey was huge.

I discovered how much my mother depended on the television as her entertainment and this was pre-streaming, pre-NefFlix, pre-online. She had a satellite dish so was blessed with many choices, yet she always landed on the same programs. The couch I sat on in my new apartment always transported me back to the vision of her perched on the edge watching her “story” (The Young and the Restless), ready at a commercial, to fly out of the room and peel the potatoes or stir the soup. This newer sofa replaced one that had broken down in the one spot where she sat. This new sofa had the indent of her bottom ever so lightly that it gave me comfort. I could believe her spirit was sitting there making this indent long after she was gone. Little did I realize how much I would miss her when she was gone. I was warned. A warning I did not take to heart. I ignored it and guffawed at the possibility I would never miss my mother, I said, rolling my eyes. That said, after her death and 12 years later I still miss her so much.

This sofa represented her alone time after dad died. It also represented the years before he died. The times where she felt so guilty watching TV when she thought she should be busy with something else. The hours she watched and enjoyed this new type of entertainment that came to her later in life. Mom and dad did not even have a television until the late ’50s and so for her, it was still a novel idea and something new! As I looked at the sofa now in my living room I could return to my vision of her perched on the sofa watching her favourite programs. On the 26” floor model console along with her story, she watched Wheel of Fortune and Jeopardy. She caught up on the news and her favourite in later years was Reba and Everybody Loves Raymond. I can remember and see her watching The Price is Right every morning from 11 – noon and just when the winner of the showcase was announced she would jump up and fly out to the transistor radio on the kitchen counter and turn it on to hear the funeral announcements from CFOS in Owen Sound. If there were any, they would be announced precisely at 11:56 a.m. right before the noon news. Her timing was impeccable, and her routine was solid. As she listened dad would slide open the patio screen door or push open the sticky wooden door coming from the “back” kitchen, home for lunch from the apple orchard. He would hang his hat on the same peg, sit in the same chair, and lunch prayers would be said over a sandwich and a coffee.

We moved to the house in Heathcote in 1970 when I was 11 years old. My mom and dad both died while living there. Mom’s last days were the same routine even though she could no longer jet from the television room to the radio she still managed to time it right, so she never missed the funeral announcements. She would push her walker out to the kitchen during the last commercial break at about 11:45 of The Price is Right, return and watch the end of her show, then as the music started indicating the announcements, she would push her walker back out to the kitchen and listen as she slowly walked. I often wondered if she pined to hear her own name to escape the loneliness. Both she and dad died in LTC very shortly after leaving this home. My dad died within three or four months of moving and mom was only officially there for three weeks. While mom was able to watch her favourite programs in her last days, she did so while staring out the window into a parking lot, sharing a room with a stranger. They stayed in their home for as long as we thought possible. I see now with what I know, they could have both stayed at home longer if I knew then what I know now.

As I watch my own favourite programs and sit in the quiet of my solitary life, and I wonder what my third trimester will look like. I feel closer to my parents and my older siblings as we all age. Fear sets in as I interact in LTC with all the aging and watch their lives in our current care pattern. Each and every person has my mother’s face and I spend quality time caring for them with a gentle voice and a song if they cannot talk to me, I sing to them. I wonder what care will look like in 25 years when I need it. What I do know is something must change, I am just not sure how to change it. How do you turn the Titanic? We all know that story and our elder care system is the Titanic, quietly cruising in the dark, straight towards disaster because no one knows how to fix it. I do my part staying the course and will go down with the ship, because this ship will go down, taking the frail, the elderly, and the delirious with it.

To not leave this pondering in such a dark place I want to offer some hope. Hope begins with the family unit. How does one die at home? With planning and care. With a community of care and conversation. I was afraid and I was angry when my parents needed me. I thought my life was more important than their last few years. I wish now I had given what was needed to make their last days as beautiful as I could. That said, I want to help others plan for end of life. As we plan for the birth of a baby with joy and beauty, we can do the same for the birth of a soul into the next life. Letting go and the best care possible is at hand. The current system is broken, so be the change you want to see in the world, begin now to plan for your own end of life, and talk with your aging loved ones about what to do when their time comes. If I can do nothing else but bring awareness to choose education and passion around end-of-life care I will be happy. There is always a choice, and good planning for a good death brings joy and peace in the years to come. As the next few years of an aging population who will be demanding and more financially prepared than ever before, let’s work together to make a good death possible. It is not “if” we die it is “when” we die, and embracing death as the next adventure and heading there with acceptance and joy is how life can be lived fully. Our lives are a program that will be in reruns in the memories of those who knew us. When they watch will they watch with love or regret? Be the director of your own movie and make it a love story to be remembered and have people watch it so often they leave a dent in the couch where their bum has been.

Complete Article HERE!

A matter of life and death, again and again

By Jack Cameron Stanton

FICTION
Should We Stay or Should We Go
Lionel Shriver
Borough Books, $29.99

Is life, no matter its quality, sacrosanct? In 2018, Aurelia Brouwers, a 29-year-old girl, caused controversy by ending her life legally in the Netherlands. Her case was anomalous: she did not suffer from a terminal illness, rather struggled with a history of mental illnesses, suicide attempts, self-harm and psychosis.

Assisted-dying remains a fiercely contested area in global euthanasia laws, belonging to the interdisciplinary branch of ethical discourse known as bioethics, which debates the value of human life. With the advances in modern medical knowledge, the global average life expectancy has increased to 72.6 years, up from 65.3 in 1990, as estimated by the United Nations.

And the transhuman movement, which advocates the research and development of human-enhancement technologies, theorises that near-future breakthroughs will extend human lifespans indefinitely.

In Should We Stay or Should We Go, Lionel Shriver, best known for We Need to Talk about Kevin, confronts the issue of assisted-dying and euthanasia when her protagonists Kay and Cyril Wilkinson propose “that we get to 80 and then commit suicide”. They are not suffering unbearably when they make the decision; in fact, they’re in their mid-50s, and in excellent health. Their reasoning is simple: humans were never meant to live beyond 80, and they ought to die on their own terms, before they succumb to the entropy of their biological clocks on borrowed time.

The novel’s departure point is March 29, 2020 – the day of Kay’s 80th birthday. After the “giddy, mind-racing rush to capitalise on time remaining”, the world has unexpectedly changed. Brexit reignited Cyril’s fierce anti-leave sentiment, and coronavirus turned Britain into a ghost land. As a result, Kay and Cyril appraise the lethal pills before them and begin to soliloquise about death in a corollary of Hamlet’s “to be, or not to be”. Problem is that as octogenarians, they remain in good health, not the mindless or stupefied walking corpses they feared they would become.

From here, Shriver disrupts the narrative with multiple scenarios that imagine what Kay and Cyril do next. Using this non-linear structure, Shriver creates a novelistic thought experiment, a network of possibilities, with each chapter reverting in time to choose a different path.

Kay goes ahead, Cyril backs out, and soon has a stroke that imprisons him inside his own body. Advances in medicine produce a magic pill that reverses ageing and allows people to live at optimal youth indefinitely. Their children, aghast that their parents planned suicide, and had squandered their inheritance, subject them to a cruel assisted-living home. Kay succumbs to dementia, and her family grieves as if she’s already dead.

For a while, banal subplots and dialogue about the burden the old place on Britain’s health system ride the coattails of a clever structural design. Cyril finally gets around to penning his memoirs, in which he writes at length about Brexit, the NHS, and why any responsible person should end their own life before becoming “fiscally ruinous”.

Kay and Cyril die many times, but never die. Each chapter resurrects them at a particular point in the preceding narrative and allows them to choose a different path. The result is that we feel trapped in a time-warp, reliving moments ranging from the banal to the dramatic. There’s something cavalier, even irresponsible, about the idleness with which Kay and Cyril discuss their exit plan, as beholden to a kind of botched utilitarianism, in which their deaths will alleviate the strain on a healthcare system clogged by senescent bed-hogs.

For me, euthanasia or assisted-dying becomes a complex moral dilemma when the person who wants to die is experiencing unceasing, terminal, and/or unbearable pain in life, and wishes a dignified death that involves a physician’s help. Stripped of this urgency, Kay and Cyril seek to end their lives merely to escape middle-class malaise, and this lack of high stakes, combined with a structure that relies on iteration, undermines the perspicuity its protagonists aim to convey.

What’s more, the structure, at first nifty and whimsical, soon wearies, and the result is an uroboric cycle during which every death is hypothetical, every decision temporary.

Should We Stay or Should We Go promises to explore mortality at a time when growing technological capacity to keep people alive has stretched the “sanctity of life” ethic to the verge of collapse. Although the premise compels, Shriver’s novel is weighed down by the snobbish longueurs of two well-off oldies who, despite their fears of death and dying, find their immortality by coming back to life chapter after chapter.

Complete Article HERE!

Death Doulas Adapt to Pandemic to Provide End-of-Life Support

COVID-19 prompted virtual visits, more interest in ‘death coaches’

by Robin L. Flanigan

Most Americans say they’d prefer to die at home, and indeed rates of home deaths are on the rise — a trend that may be fueled by the coronavirus pandemic and decreasing nursing home occupancy rates.

But having someone help navigate that end-of-life experience can be essential. Sometimes called a death coach or a death midwife, death doulas act as advocates for the dying, guiding everything from logistical preparations, such as advance care planning and funerals, to incorporating cultural and religious beliefs into final rituals.

“It’s kind of like being an event planner, but for death,” says Virginia Chang, a certified end-of-life doula in New York City.

COVID-19 has forced death doulas to adapt to pandemic restrictions and to new client needs. Those in private practice have had to offer more support over the phone and via Zoom, Chang says. At the same time, given a shortage of home care services, doulas have found themselves providing increased emotional support to caregivers, who may feel isolated or overburdened.

Virtual visits were an adjustment for Chang, who provides services through her business, Till the Last. “I do miss the intimate connection established between myself and the dying person through quiet conversation, presence and touch,” she says. “However, I have always said that empowering the caregivers to better care for their dying loved one meets my goal of better care for the dying person. So, I’m still doing my job.”

Chang has also noticed that patients and family members are getting in touch earlier than usual. Instead of being summoned weeks, or even days, before death, she is being contacted months, and sometimes years, before an anticipated death.

“They want to be better prepared,” she says. “By being better prepared, they’re better able to face death when it comes.”

Death doulas a ‘missing piece’ in care

Home has surpassed the hospital as the most common place of death in the United States for the first time since the early 20th century, according to a New England Journal of Medicine study published in 2019 (months before COVID-19 hit the U.S., which means that the number of home deaths is likely higher now).

Studies have shown that approximately 80 percent of Americans would prefer to die at home if possible, according to the Stanford School of Medicine. That figure may be higher now, after the pandemic focused people’s attention on death and dying, but COVID-19 has certainly amplified interest in the role of death doulas, says Henry Fersko-Weiss, 73, a licensed clinical social worker who, in 2003, created the first formal end-of-life doula program in the U.S., at a New York City hospice, and cofounded the International End of Life Doula Association.

“The recognition that death can be done differently is increasing because there’s been so much talk about death and dying,” he observes.

Though the work that death doulas do has probably gone on for thousands of years and been called different things, Fersko-Weiss says, the death doula movement gained steam two decades ago, offering meaningful services to those who felt limited by a traditional medical system.

“End of life needs more than crisis intervention,” he says. “This is a missing piece during a very demanding time in people’s lives.”

Fersko-Weiss cautions that people who are interested in working with a doula should know that no industry standards currently exist and that a certification by one organization doesn’t hold the same value as a certification by another.

Chang, for example, learned about end-of-life doulas after attending a talk that Fersko-Weiss gave. She has since been trained by the International End of Life Doula Association, the University of Vermont End-of-Life Doula Professional Certificate Program and the Visiting Nurse Service of New York.

Ask plenty of questions

Doulas support the dying, but they also provide services to those left behind.

Arlene Stepputat, 67, volunteers as a project manager for the nonprofit National Hospice and Palliative Care Organization’s End-of-Life Doula Advisory Council. The council’s Doula Grief Project, which offers free and confidential grief support services to those dealing with loss, grew out of the COVID-19 restrictions and the fact that most doulas couldn’t work in person with clients and families.

Experienced end-of-life doulas, trained in compassionate listening, provide one-hour telephone or videoconferencing sessions over four weeks as normal support systems continue to be taxed.

People who are considering the services of a death doula should ask plenty of questions, advises Stepputat, owner of Dying in Grace. “Interview that person like you would any other person you’d be making a contract with,” she says.

The National End-of-Life Doula Alliance offers an online state-by-state directory of doulas.

Some questions to ask a death doula are:

  • What is their experience?
  • What do they charge?
  • Where were they trained?
  • Why do they do this work?

Stepputat, who lives in Santa Barbara, California, was drawn to this occupation because of multiple losses: Four days before her 12th birthday, her father died in an accident; when Stepputat was 19, her girlfriend was murdered; and several street youths she worked with as a young adult died from suicide and other causes.

“Choose wisely because you are going to use this person in one of the most challenging times of your life,” Stepputat says. “It can also be one of the most sacred and beautiful times of your life. Creating a peaceful transition for someone you love is a gift.”

And the benefits of a doula-patient relationship go both ways, according to Terry Bonebrake, 58, of Grand Rapids, Michigan, a death doula who says she reaps rewards from her work.

“Anytime you do service work, your focus is on the other person, and yet you learn things you might not ever have known otherwise,” she notes. “What’s probably affected me the most is seeing how much every moment counts. This 60 minutes and the next 60 minutes will never be the same again.”

What do death doulas do?

Doulas “inform, support and guide, rather than advise or do,” explains Merilynne Rush, who offers end-of-life doula training, mentoring and certification through her consultancy, The Dying Year. Rush says end-of-life doulas can:

  • Help form a circle of support and find tasks for those who want to help.
  • Conduct a life review: Record stories, make a video or write letters to loved ones for future occasions.
  • Provide hands-on nonmedical comfort, such as guided imagery, breathing and relaxation techniques, hand massage and essential oil therapy
  • Sit bedside so family and caregivers can rest.
  • Pray; meditate.
  • Offer active listening.
  • Share information about local resources, like hospice and palliative care.
  • Prepare meals and do light housework.
  • Discuss wishes for end-of-life care (advance care planning).
  • Help arrange for (or keep) vigil during active dying.
  • Share information about home funerals, green burials and body care after death.
  • Offer grief support and ongoing visits after the death.

Complete Article HERE!

We Are the Flowers in the Garden

By Margaret Meloni

Once while I was visiting my mother, she looked out of the window and saw some strangers wandering around in her backyard. She opened the sliding glass door and asked, “Can I help you with something?”

Sheepishly, one of the visitors replied: “We heard about your garden and we just wanted to take a peek.”

My mother had a beautiful English garden. It was her pride and joy. I know for a fact that on the morning that she died, she had worked in her garden. Which is exactly what she would have wanted. Sometimes, when I visited, we would walk through the garden together. She would give me a tour; while pulling a weed or two she would teach me which plants should be near one another, and what to plant to stave off intrusive insects or aggressive vines. She carefully cultivated each section of her garden, paying regular, focused attention to what was or was not working and adjusting as needed. I view her garden and her work as an analogy for our own spiritual practice.

“I don’t envision a single thing that, when undeveloped & uncultivated, leads to such great harm as the mind. The mind, when undeveloped & uncultivated leads to great harm.”

“I don’t envision a single thing that, when developed & cultivated, leads to such great benefit as the mind. The mind, when developed & cultivated, leads to great benefit.”

“I don’t envision a single thing that, when undeveloped & uncultivated, brings about such suffering & stress as the mind. The mind, when undeveloped & uncultivated, brings about suffering & stress.”

“I don’t envision a single thing that, when developed & cultivated, brings about such happiness as the mind. The mind, when developed & cultivated, brings about happiness.” (AN 1: 27–30)

We are like the flowers in the garden. We require careful cultivation. To grow in our practice, we need to place ourselves in an appropriate environment, surrounded with the right companionship, placing regular, focused attention through learning and meditating and following the Noble Eightfold Path.

During our garden tours, Mom would often cut back or completely remove a dead or dying plant. On more than on occasion she said to me: “There is a lot of death in the garden.” Her tone was very matter of fact. Her statement came from a place of this is how it is.

Mom never let gardening deaths and disappointments get the better of her. She had a very good understanding of the expected lifespans of her plants. She was not completely surprised if a raccoon dug up her bulbs, or if a passing deer bit the head off of a flower, or if a plant seemed to randomly die. Occasionally she would express annoyance at the raccoons and the deer, and disappointment when a plant did not work out, but she did not dwell on it.

Mom gardened with non-attachment. With a complete understanding of horticultural impermanence, she did not avoid using a flower that would bloom quickly and then fade away. She would showcase that flower. Finding a way to surround it with plants that would allow it to have a brief moment of stardom. Then, the surrounding plants would have their turn. And eventually, they too would disappear. Within the context of her garden, Mom understood the truth of aging and death. She knew that once planted, a flower would bloom and then die.

“The aging of beings in the various orders of beings, their old age, brokenness of teeth, grayness of hair, wrinkling of skin, decline of life, weakness of faculties — this is called aging. The passing of beings out of the various orders of beings, their passing away, dissolution, disappearance, dying, completion of time, dissolution of the aggregates, laying down of the body — this is called death. So this aging and this death are what is called aging and death. With the arising of birth there is the arising of aging and death.” (MN 9.22)

We are like the flowers in the garden. Once we are planted and begin to grow, we will die. And others around us will die. Take a look at a garden, or a park, or a forest. There might be tall and mighty trees that are more than a hundred years old. Then there is a flowering ground cover that shows up in early spring and fades away with the summer heat. There are rose bushes, which last several seasons. And, perhaps, tulips or daffodils that pop up once a year; they have one bloom and they are done. We do not know who that seasonal ground cover or the ancient tree will be.

Do not let the concept of impermanence discourage you. When the meaning of impermanence is misunderstood, it can push you toward nihilism. Some develop an attitude of “if nothing lasts, why bother?” If my mother had taken this point of view, she would have missed out on all the joy she felt while gardening. Her neighbors would have been denied the opportunity of walking past such beautiful scenery.

Go all in. Instead of avoiding experiences in life, learn the most you can from those experiences. Instead of avoiding relationships with others, be fully in those relationships, without attachment. Learn from the present moment because it will be gone. Don’t think, “Why bother? This will not last.” Do think: “This opportunity will not be here again. Let me really be in this moment and let it be my teacher.” Like my mother with her garden, be skillful in how you cultivate your practice and your mind. Be aware of death. And let it encourage you to live.

What arises, ceases. With each passing moment, even the strongest, sturdiest tree becomes closer to death. Today, petunias might be blooming, yet they will wilt under the hot summer Sun. It is not about if we and our loved ones will die, it is when.

Complete Article HERE!

Why I believe in the concept of a ‘good death’

‘There comes a time, I suggest, at which the end needs to be accepted and embraced – with dignity.’, writes Paul Monk.

by

Two recent essays and an opinion piece in this newspaper have expressed grave concern about the wave of euthanasia legislation being passed in Australia. The essays were by medical specialists Haydn Walters and Marion Harris and staff writer Jamie Walker. The opinion piece was by Angela Shanahan. As a survivor of a long battle with cancer, I write to take issue with crucial aspects of their arguments.

I am a Fellow of the Rationalist Society of Australia, which supports sound VAD (voluntary assisted dying) legislation. I am also a member of the steering committee for the cancer school for patient education and empowerment at the Peter MacCallum Cancer Centre. On several grounds, therefore, I am implicated in this debate. My cancer was melanoma, so I ­literally have skin in the game.

Walters and Harris argued that “the pro case is a simplistic appeal for autonomy” and, more pointedly, that “suicide has never been an acceptable solution to any problem, even if it is quick, easy and cheaper than care. Such actions impact all of us.”

Walker wrote with evident concern that, with the passage of these laws in state after state, “we as a society are entering uncharted territory”.

Shanahan wrote fiercely that VAD would send doctors into ­hospitals to kill.

The other lines of argument, conversely, are based on special pleading. Opponents of euthanasia – a word based on the Greek for “good death” – insist that legalisation of it will lead down a slippery slope to involuntary ter­mination of afflicted lives or, at the very least, to unnecessary ­suicides. All the above writers line up on this position.

But such an argument implies that the voluntary nature of euthanasia isn’t the problem. What is feared is involuntary termination or poor judgment on the part of stranded or afflicted people. If so, then it is precisely autonomy that needs to be accentuated. Opponents of euthanasia can’t have it both ways. What is it to be, insistence on autonomy or denial of it?

If, as Jamie Walker put it, we are “entering uncharted territory”, we’d best get busy charting it. There are now many case studies overseas and a rich literature on the subject. The territory is by no means as uncharted as Walker appears to believe. But there is every reason to explore it further and to deepen our collective understanding of what is at stake.

A splendid recent exploration of the matter is Katie Engelhart’s The Inevitable: Dispatches on the Right to Die (Atlantic Books, London, 2021). It is impossible to read her reflections without coming to appreciate both sides of the debate and the irreducible dilemmas and complexities entailed in euthanasia. Her case studies are poignant and often excruciating, but she hasn’t written a polemic, whether for or against euthanasia. She charts the territory.

It is equally clear that the Walters/Harris line of defence is problematic. Rather than asserting that we are not entitled to autonomy in end-of-life choices, they would have done better to argue that we need to educate for and facilitate authentic autonomy in such matters. Quite plainly, that is what opinion polls show a majority of people want, which is why state after state has come around to passing legislation permitting euthanasia under closely defined conditions.

The word euthanasia has been disowned by some, in favour of “voluntary assisted dying” (VAD) or “dying with dignity”. Opponents such as Walters and Harris prefer the expression “physician-assisted suicide/euthanasia”, or PAS/E. There’s a history to this. But, perhaps because of my classical education, I don’t have a problem with the term euthanasia. It seems to me entirely appropriate that we should desire and seek a “good death”, rather than a lingering, incapacitated, painful one. There comes a time when saying “Enough, no more!” is both dignified and appropriate.

The question that ought to exercise us, I submit, is not whether this is desirable, but how to facilitate it, while minimising abuses or ill-considered decisions.

Over the course of more than a decade grappling with recurrent and then metastatic melanoma, I was often given to pondering this subject and it was clear to me that I would want the option of calling it quits under certain circumstances and that, importantly, this seemed a natural right. Walters and Harris assert that suicide is never an appropriate solution. Really? They must know, given their fields of expertise, that cells die based on a programmed process called apoptosis – they reach their use-by date and give up the ghost.

Cancer cells are those that refuse, as it were, to accept the rules of the game. We need to naturalise dying as human apoptosis, instead of prolonging physical life under any and all circumstances by any means possible.

One of my favourite case studies in suicide, as distinct from VAD or PAS/E, is the great Carthaginian general Hannibal, in 182 BCE. He was then the age I am now. He had devoted his life to war with the rising power of Rome. Defeated, he sought other allies, other means, but these, too, had been thwarted and the Romans were coming for him.

Hannibal could have awaited them and suffered capture, humiliation and execution, or he could have tried fleeing and hiding. He had had enough, however. In dignity and pride, he swallowed poison and died. He didn’t require legislated permission or a doctor’s authorisation.

There have been other cases in history. ­Socrates took his hemlock. Was that inappropriate? There comes a time, I suggest, at which the end needs to be accepted and embraced – with dignity.

Why should a lucid and dignified option not be available to us, when we have concluded that “the Romans are coming”, at last, for us? The question, surely, is not whether it should be, but how to make possible authentic autonomy in the face of end-of-life ­dilemmas. If our new legislation seems inadequate for one reason or another, let it be amended. But let’s frame our approach around apoptosis and autonomy, not fear and patient disempowerment.

Complete Article HERE!