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.

¤

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.”

¤

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!

The Books Keeping Me Grounded as I Contemplate Becoming a Care Partner to My Parents

By

My mother was driving home from work one drizzly day at the end of 2019 when she was struck by an oncoming car that had veered into her lane. Her car was totaled but, luckily, she sustained minimal injuries. Still, she was mere months away from retirement and, now, she had to grapple with the effects of a concussion, shoulder pain, and severe anxiety.

It was eventually determined that she would need surgery for her shoulder. But then the pandemic hit and her treatment was delayed.

A year and a half later, she still has shoulder pain and tires easily. She goes to physical therapy three times a week. Sometimes, she has flare-ups and needs cortisone shots. She’s nervous about driving very far.

My father, meanwhile, has been wrestling with chronic depression and anxiety for years (we two are birds of a feather…). In recent years, his hands have developed tremors that have become increasingly worse. Testing has revealed inadequate answers.

Amidst other medical issues, it also emerged that my father was experiencing memory problems. The other month, he was diagnosed with mild cognitive impairment which, in 50% of cases, can grow into full-blown dementia.

I’ve had an interest in end-of-life care for a while now, mostly because of what I observed when my mom was caring for her own father. I’ve written previously about the books I’ve enjoyed that tackle end-of-life care, compassion fatigue, and caregiver burnout. More recently, the topic has become a side niche for me in my journalism work. In a piece that went live on Rewire.org last month, I write about the lack of systemic support for unpaid family caregivers.

All this time, I felt I was preparing for something. After all, I’m 40. My parents are 70.

But as the past two years have brought more challenges — both with their health and with the decisions I was forced to make for my 6-year-old as COVID spread across the world — I realized I wasn’t prepared at all.

So, I turned to books. Because of course I did. That’s what I do. And while I’m still scared of the inevitable shift to come in the next few years, I at least feel more grounded in what it all means, and what options we have.

If you, too, are entering the “sandwich generation,” allow me to share which books were helpful for me.

Being Mortal by Atul Gawande

I actually read this one several years ago, but I’ve found it to be a good one to return to. In it, Gawande contemplates what it means to experience a “good death,” and shows how medical advances have led us to push back against the bounds of mortality in such a way our quality of life in later years is adversely impacted. He then shows that there is another way and that, rather than postponing death, we can enjoy life — until the very end.

Advice for Future Corpses (and Those Who Love Them) by Sallie Tisdale

A fellow Book Rioter recommended this one to me back when I first started to get nervous about my parents’ health. After reading a library copy, I ordered my own copy, and now I’m doing a reread so I can dog-ear pages and take notes. Every time my husband sees the book on the counter, he shakes his head and calls me a morbid weirdo. But this book is a revelation. Written by a practicing Buddhist who also spent a decade working as a nurse in the field of palliative care, Tisdale provides a comforting perspective on whether or not a “good death” actually exists (good for whom?); what you should and should not do, say, and expect from your loved ones in their later years; what you can expect at the different stages of aging; the nature of grief; and more. I may be a morbid weirdo, but at least I’m a morbid weirdo who now feels a little less afraid.

Can’t We Talk About Something More Pleasant? by Roz Chast

I actually ready this one right before my dad received his MCI diagnosis, and I felt as if I were looking into my future. There is the anxious, aging father who eventually slips into dementia. There is the willful, stubborn-as-fuck, aging mother who refuses to ask for help when she needs it. And then there is the daughter — Roz Chast herself — who doesn’t know quite how to handle this sudden shift without completely upending her own life. Beyond the parallels to my own life, I appreciated how this graphic memoir showed a woman pushing back against what is expected of daughters, making decisions that took into account not only the care of her parents but also of herself. Foregoing one’s own care is a trap many unpaid family caregivers fall into.

What We Carry by Maya Shanbhag Lang

My mom and I have always been close…in a slightly codependent way. So I immediately connected to Lang as she described the ways in which she needed her mother — how much she counted on her to be there and support her during hard times — and how disoriented she became when, after becoming a mother herself, things changed. There are a lot of layers to this memoir, but what felt particularly relevant to me were the moments of reflection around her changing relationship to her mother as her mom became swallowed up by Alzheimer’s and the way this informed how she mothered her own daughter. On top of that, threaded throughout the book, was a fable of sorts about a woman who carries her child across a river and, as the waters rise, must decide whether to save herself or her child. By the end, though, Lang begins to see that the question of who to save is not as black and white as it first appeared.

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!

In ‘The Living Sea of Waking Dreams,’

— Last-ditch medical interventions are their own horror story

Confined to a hospital bed, her 86-year-old body shutting down, her mind “breaking into fragments and receding,” Francie asks a nurse to bring her a contemporary novel. The nurse returns with, of all things, “Sabbath’s Theater,” Philip Roth’s sexually explicit work about an aging, suicidal creep. It’s just one of many indignities visited upon poor Francie in “The Living Sea of Waking Dreams,” Australian writer Richard Flanagan’s latest novel.

Flanagan won the prestigious Booker Prize in 2014 for “The Narrow Road to the Deep North,” an extraordinary novel about Australian POWs during World War II that is unsparing in its considerations of human cruelty. “The Living Sea of Waking Dreams” shares its predecessor’s concerns but little of its power.

A survivor of cancer and the brain-damaging condition hydrocephalus, Francie is back in the hospital when the novel opens. She has “taken a bad turn,” and her condition worsens after she falls and experiences a brain hemorrhage. As Francie’s decline accelerates, her three late-middle-aged children become increasingly determined to keep her alive. They force their mother into last-ditch medical interventions with the complicity of a health-care system Flanagan suggests is more interested in its well-being than that of its patients. Because “The Living Sea of Waking Dreams” is essentially a horror story, their efforts succeed.

Yet this is not Francie’s story. It’s about Anna, the eldest child, only daughter and family narcissist. An architect, Anna is frequently summoned from Sydney to her birthplace in Tasmania by her blue-collar brother Tommy, whom she disdains for being “that most bourgeois of embarrassments: the lower-class relative.”

Her assessments of Francie are even ranker. She looks upon the woman’s “wretched body” as nonhuman, “a carapace of something long ago caught and killed in a spider’s web.” Her reactions to Francie’s scent are equally unkind.

Allowing that her once-strict mother’s “true nature . . . was open, gentle, and loving,” Anna initially wishes for Francie to die so her pain can end. But then, Anna’s ego intervenes. “And precisely because of her shame she saw that henceforth she would have to devote her very being to keeping her mother alive,” Flanagan writes. From there, Anna’s justifications for Francie’s torment pile up like so many medical bills.

Anna has an ally in her youngest brother, Terzo, a businessman who discusses the prolonging of Francie’s life in terms of “victory” and “triumph.” They bully Tommy, whose stuttering they mock and whose poverty they find offensive, into agreeing with them about Francie’s care. “As Terzo put it, with a smile,” Flanagan writes, “they were a board of directors examining a newly acquired corporate takeover.”

Flanagan gets close to something good here, a wicked take on end-of-life care, economic privilege and hubris in the face of death. “The Living Sea of Waking Dreams” can even be viewed as a decent allegory on the climate crisis, which Anna contemplates while scrolling through Instagram, often while on the toilet. In one welcome, Jenny Offill-like moment, Flanagan writes: “How did you adapt to your own murder, wondered Anna as she watched a cat video. Was that what was happening? Were they adapting to their own extinction? Was she?”

If only Flanagan weren’t so obvious about it all. No point in this book is too plain that it can’t be blasted with a spotlight. As Anna watches Australia burn from the narcotizing screen of her phone, her mother vanishes into hallucinations of one-eyed CIA agents and “animals turning into birds and then into plants.” Piece by piece, Anna also begins to fade away. A hand disappears and then a knee, as if they’ve been digitally erased. She feels no pain, and her mobility is unaffected. “But now it had vanished she realised she missed it,” Anna thinks of her invisible knee. “But like the aurochs it was gone. Like the thylacine and the Walkman. Like long sentences. Like smoke-free summers. Gone, never to return.” Like a reader’s patience.

That Anna is unlikable doesn’t really matter, of course. Cold hearts and warped minds make for great literature. What irritates most about Flanagan’s novel is that Anna is more a character than a person. She’s hard to take and harder to believe. Is Anna, in her late 50s, really “shocked” to discover that Francie is more than just a mother but “an adult independent of [her family] and their needs”? Does it really take her so long to realize that postponing Francie’s death is not the same as giving her life? Is she only now understanding that “the more the essential world vanished the more people needed to fixate on the inessential world”? Did she really not know any of this? Did Flanagan?

Complete Article HERE!

We all have to die.

Why have we forgotten how to die well?

In a wise and compassionate book, an American physician offers advice on approaching the end of our days.

by Jose Bufill

The Lost Art of Dying: Reviving Forgotten Wisdom
by Lydia Dugdale, 2020, 272 pages

Hardly a day passes without new descriptions of killing and dying — both fictional and factual — invading our consciences, and yet so many of us still choose to postpone consideration of our own death. The practical neglect of the obvious fact of our mortality seems to be a distinctively post-modern and Western phenomenon that has become an important source of suffering and despair.

This is the central irony that Dr Lydia Dugdale identifies in The Lost Art of Dying and the contradiction she seeks to resolve. The consideration of death is the beginning of wisdom, so why do we live without it?

She writes from the perspective of an academic internist, who — in the course of her work with the sick — has identified manifestations of a kind of malady that affects both patients and their doctors. Its symptoms may be subtle and vary widely, but they rise to the surface acutely when mortality imposes itself: families who insist on repeated attempts to resuscitate dying relatives, doctors who offer patients treatment with no hope of real benefit, neglected elderly sick who die lonely and alone, occasional requests for help in dying. Fortunately, these accounts are not necessarily the norm, but neither are they rare events. There are other experiences with persons who die “well”: well accompanied, at times joyful, and grateful for the time their illness has provided to reflect and make amends.

The examples offered by Dr Dugdale of people facing death resonate well with the observations of Dr Balfour Mount, the Canadian surgeon who became a palliative care physician after his own cancer diagnosis. Dr Mount’s work identified the character traits of patients who experienced either persistent anguish and existential distress from their illness, or those who were able to discover wholeness and integrity in it.

He found that traits such as a sense of connection to others and meaning in life, the capacity to find peace in the present moment, the experience of a non-adversarial connection to the disease, and the ability to choose one’s attitude before adversity rather than to exert control over it were all associated with healing through illness: a good death.

Clearly, achieving this perspective on death is hard work that should not be left to the very end.

Over the course of nine chapters, the journey with Dugdale begins with “Death”, ends in “Life” and pivots on the chapter entitled “Fear”. For Dugdale, it’s the “fear of death” that explains the varied symptoms of despair demonstrated by patients and doctors today. When we are afraid, the reaction to “fight” or “flight” takes over. We “fight” by showing anger, directed at times toward family, professionals attempting to help, or the impersonal “system” surrounding us. Anger may express sadness over lost goals and frustrated plans, or may become a means to “endure”, to hang on, to survive at all costs.

Using the language of war to refer to our engagement with illness reflects the same fearful attitude toward death:

“His grandfather was battling pneumonia. My friend is a cancer survivor. I’m going to beat this infection. She’s a fighter; she’s going to kick this disease. And so forth. We march forward, as determined as military generals, reminding our loved ones and ourselves that there is no reason to fear the enemy. We have the strongest health-care system of all time; no disease can conquer us.”

Among the more frequent expressions of “flight” in response to imminent death, is the attempt to control its time and circumstances. Assisted suicide provides an escape for those who do not wish to fight death but still want control. Perceptively, Dugdale describes the existential threat of a life-threatening illness in the following terms:

“When the natural world threatens, we take refuge in homes and cities. But when sickness threatens, we become homeless. Our own bodies evict us as if we were no longer welcome. Our frames fail, our minds grow dim. Our stamina falters, our work suffers. This, in turn, threatens our carefully constructed fortresses of security. As our physical space closes in, we stop being able to appreciate the beauty of the world. (…) Sickness makes our bodies inhospitable. But it also estranges us from our ideological framework. It is no longer enough to work hard. Ambition seems foolhardy, and prestigious careers offer false salvation. Stripped of our illusions, we find ourselves existentially isolated in our brokenness — perplexed in body and spirit.”

To escape the perplexity, one should learn to abandon our flawed subjective appraisals of what is “important” and attend to the immediate reality of one’s new circumstances. To die well becomes easier if we grapple early and often with existential questions rather than avoid them.

In Dugdale’s account, modern medicine is incapable of offering much help. We have become purveyors of hope through pills and infusions: “providers” rather than “healers”. What is needed instead is common sense: to recover a “lost art” based on the simple premise that people go somewhere forever after they die, and so they should live each day in a way that would help them look forward to a happy transition.

Written manuals offering practical advice to help the dying prevailed for 500 years throughout the West as a popular literary tradition. The “Ars moriendi” — we learn — began during the European “black death”, probably the nastiest and most persistent pandemic among the many that swept through the peoples of antiquity and the Middle Ages. Two-thirds of the European population died horribly from a disease they could not escape and before which they were powerless. The stench of death was everywhere. And so everyone was directly affected and engaged.

In response, a thoughtful and systematic approach to help the dying was proposed for the first time at the Council of Constance (1414 to 1418) by Jean Charlier Gerson, Chancellor of the University of Paris. The intent was to offer practical advice for use at the bedside.

The result was an explosion of self-help manuals advising those who cared for the dying. They identified the most common temptations encountered at the end of life — disbelief, despair, impatience, pride and avarice — and measures to relieve them. They suggested prayers for the dying; acknowledged that the death of an individual affected and so involved the entire community; and emphasized the need to prepare for death long before it happened. And back then — as today — it could happen quickly with little warning.

So what happened about 100 years ago that led to the death of the art of dying?

We could call it a slowly progressive, insidious pandemic of “affluenza”: the malaise that results from relying entirely on the pursuit of material wealth to achieve happiness. Scientific and industrial revolutions and the prosperity that gradually followed meant that human beings were less subject to the whims of nature. Food and clothing became easy to acquire and replace. Adequate shelter, running water and electricity were eventually assumed by almost everyone.

No mystery or threat nature could present seemed beyond the reach of human reason. Once common, often fatal infectious diseases were cured with antibiotics — beginning with the discovery of penicillin in 1928 — the average human lifespan more than doubled, at least in developed countries. And the trend toward longer life spans is expected to continue. Today, we can speak without exaggeration of cures for many cancers. The conquest of death — our mortal enemy — seems within reach.

And thus medicine becomes a means to rescue the doomed. Replacement organs, dialysis machines and ventilators are like life vests for the drowning.

“Doctors love to be rescuers, heroes who descend from on high to fight evil disease and liberate patients in distress. It is part of our common mythology. The bioethicist Howard Brody says that this ‘rescue fantasy is a power trip: it envisions the physician having the power to snatch the patient from the jaws of death.’ (…) For their part, patients seek a rescuer to release them from their life-destroying maladies. (…) The physician’s compulsion to rescue fuels the patient’s burning desire to be rescued, which again stokes the doctors rescue fantasy.”

A host of forces — cultural, economic, technological — have conspired to medicalize the dying process. Fewer people today die at home surrounded by loved ones. Many die in sterile, standardized institutions run by strangers, at times clinging to false hope of survival that medicine is not able to satisfy.

So is death annihilation or is it just a short nap after which we awaken in the arms of Love? That is the question.

Dugdale contends that our best chance to resolve the dilemma is by careful, persistent reflection on the meaning and purpose of life: “the art of dying is really the art of living.”

This insightful book accurately describes the widespread dysfunction that occurs when we are distracted from the consideration of our own mortality. It would be great if Dr Dugdale’s next book might offer a specific, practical road map — a modern Ars moriendi — to help us help the dying.

Complete Article HERE!

How the light gets in

by

When palliative care doctor Rachel Clarke looked back over her notes typed hastily pre-dawn in the midst of a global pandemic, she expected to find only darkness—an unrelenting stream of death and despair. To her surprise, her insomniac’s diary was “illuminated by pinpricks of light”. “People began to organise, street by street, village by village, to make sure that their most vulnerable neighbours…were safe and fed and kept from harm”, writes Clarke. Rainbows appeared in windows up and down the country in support of key workers, volunteers set to work sewing masks and manufacturing visors, and a retired British Army officer approaching his 100th birthday united a divided nation by walking laps of his garden to raise money for the National Health Service (NHS).

Clarke, who embarked on a career as a current affairs journalist before beginning medical training, has since punctuated her medical career with writing—from Your Life in My Hands, charting her experiences as a newly qualified doctor, to Dear Life, exploring death, grief, and the things that truly matter at the end of life. Her latest work, Breathtaking: Inside the NHS in a Time of Pandemic, spans the 4 months from New Year’s Day 2020 to the end of April that same year—a fleeting snapshot of a time during which life in the UK changed immeasurably.

“Pacing the kitchen and tapping a keyboard became a kind of nocturnal therapy”, she explains. These notes, typed “fast and furiously” while her family slept, open a window to life in the UK in its darkest hours. Turning the pages of Breathtaking, we relive the angst and uncertainty of those early months. The anguish about personal protective equipment (PPE) and testing, death tolls rising too high to take in, and the sudden, unexplained obsessions with baking bread and accumulating toilet paper that swept the nation. But, for those of us who know COVID-19 in only an abstract sense, following the news from the safety of our homes, Clarke gifts us a unique glimpse of life in the eye of the storm. As the crisis evolved, day by day, week by week, we learn, in real time, what life was truly like for those on the frontlines—those who risked everything, not knowing that they would see the other side. “To us”, she explains, beyond statistics and modelling, “the pandemic is a matter of flesh and blood. It unfolds one human being at a time”. In these darkest of times, Breathtaking shows us that the greatest sources of light came from within the NHS.

Beyond the inestimable challenges of treating a new disease, acquiring knowledge on the run as patients lurched from one physiological crisis to the next, health-care workers fought—through the physical barriers of masks, gowns, and distance—to restore the humanity to their practice that COVID-19 so cruelly stripped. Overnight, hospitals cleared of visitors, carparks emptied. For Clarke, whose work in palliative care has made her all too aware of the power of human connection, seeing patients isolated from their loved ones feels like a psychological assault. “Covid even steals the patients’ names. So great are the risks of communication in PPE that it is safer for the nursing team to use bed numbers to refer to the human beings for whom they care”, she writes. Humanity is restored by any means possible: medical students volunteer to liaise with patients’ families, many of whom are self-isolating and alone; hearts knitted by volunteers are used to symbolise the connection between patients and their families; health-care workers add laminated photos of their faces to their plastic gowns. “Our tools are uncertain and improvised”, she writes. “We use whatever we can to draw people back together and we refuse to settle for despair.”

Clarke’s style is intimate and generous, opening up to us her own home and family life. We join her pacing in her kitchen—glued to her phone—as she watches events unfold, first in Wuhan, then Lombardy, and finally on her doorstep. We watch her conceal her anxiety from her husband, guilty at even an insignificant deception. We feel her exasperation as PPE at the hospice runs perilously low. We feel her overwhelming desire to help, which drives her to volunteer on the frontlines. Misty-eyed, we’re there as she attempts to quell the fears of her 9-year-old daughter, terrified of losing her mother. “How can I possibly tell her I have volunteered, that I want to be the one helping these patients?”, she asks.

Although not yet over, the opportunity to reflect on these early pandemic months is at once cathartic and deeply humbling. Powerful personal stories allow us to grieve the loss we have suffered as a nation, far beyond the statistics, as well as to appreciate the sacrifices made by NHS workers and volunteers who put helping others above all else. Although Clarke cannot conceal her blistering anger at the failings of those in charge, at its core Breathtaking brims with pride and positivity. “Every single day, the grit and devotion of colleagues astounded me”, she writes. “In the 11 years I have practised as a doctor, I have never been prouder of nor more humbled by the NHS and its people.”

Complete Article HERE!

In grieving for her father, a novelist discovers the failure of words

Review of ‘Notes on Grief’ by Chimamanda Ngozi Adichie

Chimamanda Ngozi Adichie

By Carlos Lozada

Not all deaths in the time of covid are covid deaths. Even as we tally the fatalities resulting from the coronavirus — indicators of personal grief as well as national competence — we continue about the business of succumbing to non-pandemic maladies, deaths no less painful for their familiarity, grief no less wrenching for its disconnect from this plague upon us.

Novelist Chimamanda Ngozi Adichie experienced such a death last year, when her father, James Nwoye Adichie, a distinguished Nigerian academic, passed away because of complications from long-term kidney disease. In “Notes on Grief,” a slim, poignant reflection originating from a New Yorker essay of the same title, the author recounts her efforts to cope with her loss, to accept condolences, to carry out the inevitable rituals of death. “I want there to be a point,” she writes, but even looking for the point is so painful that she cannot fathom “the catastrophe of a direct, unswerving stare.” Grief is always hard to observe.

She writes of her father and his life and the void he leaves, only to find words wanting. With death, she explains, “you learn how much grief is about language, the failure of language and the grasping for language.” All the expressions of sympathy that come from her friends, well-intentioned interruptions of her pain, are inadequate, counterproductive, or they simply annoy. He is resting grates on Adichie in particular. “He could very well be resting in his room in our house in Abba,” the author complains. He is in a better place is not just cliched but presumptuous. “How would you know?” she demands. And when people emphasize that her father lived a long life (he died at 88), she takes little consolation. “Age is irrelevant in grief; at issue is not how old he was but how loved

Her own words have been little better, Adichie chastises herself, recalling her past condolences to grieving friends. Find peace in your memories, she would tell them, only now realizing that memories, rather than relief, produce “eloquent stabs of pain.” And when a friend reminds Adichie of the sentiment she expressed in one of her own novels — “Grief was the celebration of love, those who could feel real grief were lucky to have loved” — the author finds that the words, meant to console, felt “exquisitely painful.” The line is from “Half of a Yellow Sun,” published 15 years ago, back when it seemed she had all the time in the world.

Any one of us who has lost loved ones — even that euphemism feels deficient, for we have not lost anyone; we know too well what happened to them — can relate to Adichie’s anger and her compulsion to reshape it into guilt. She ponders ways she could have anticipated her father’s illness, steps she could have taken to fend off his deterioration, “to make it un-happen.” A brief respite in which she forgets his departure feels like a betrayal, Adichie admits, not only to him but to her relatives in Nigeria who were with him when he died, while she lives across the ocean in the United States. “Do I forget because I am not there?” she wonders. “I think so.” So Adichie seeks other ways to reaffirm their closeness: scouring her belongings for a family tree he once sketched for her, digging up his old letters. “There is an intense pathos to looking at his handwriting,” she realizes. It is as though in seeing his written words, she can again communicate with her father.

The pandemic’s unavoidable form of communication — the Zoom call — is ever present in “Notes on Grief,” as are other covid impositions. The book begins on a weekly family Zoom, with siblings dialing in and cracking jokes from England, the United States and Lagos, and the parents connecting from their home in Abba in southeastern Nigeria. (“Move your phone a bit, Daddy,” they have to tell him when only his forehead appears on the screen.) Her father had been feeling a little sick and sleeping poorly, she recalls, but he urged them not to worry. Three days later, he was gone. Their next Zoom call “is beyond surreal,” Adichie writes, “all of us weeping and weeping and weeping, in different parts of the world, looking in disbelief at the father we adore now lying still on a hospital bed.” And there are yet more Zooms in which they must discuss arrangements for the funeral and religious services. The logistics of death in a pandemic can feel overwhelming. Will Nigeria’s airports be open and stay open? How to ensure a covid-compliant Mass? “I come to dread the Zoom calls,” Adichie writes. “The family shape is changed forever, and nothing makes it more poignant than to slide on my phone screen and no longer see the square with the word ‘Dad.’ ”

That missing Dad emerges as a wise, kind, thoughtful and understanding presence throughout “Notes on Grief” — a devoted teacher, proud father and supportive husband, a man who instilled in the author the confidence to admit she did not know something, who taught her never to fear the disapproval of strangers. “He infused meaning into the simplest of descriptions: a good man, a good father.” I have no reason to imagine he was anything less than this father of which one might dream, yet even she realizes that grief can reshape perceptions. “No, I am not imagining it,” she writes in almost defiant affirmation. “Yes, my father truly was lovely

The loveliest writing in this reflection, however, is not about James Nwoye Adichie, but about the anguish and longing his death produces in those who suffer his absence most acutely. “Is this what shock means, that the air turns to glue?” Adichie asks, capturing her physical response to the news. “How is it that the world keeps going, breathing in and out unchanged, while in my soul there is a permanent scattering?” With death, we expect the world to mourn with us, and when it doesn’t, it can feel like an insult.

In the traditions of Nigeria’s Igbo people, Adichie explains, death involves a settling of accounts. This “clearance” requires that any outstanding dues to the village, the clan or other local associations be paid in full, otherwise the funeral will be boycotted. The custom shows how “forcefully communitarian” the culture remains, she writes. The author does not want to care about such things, but she must, because such things mattered to her father.

And it is in community that solace is possible. Sometimes, upon the death of a loved one, friends we had never met tell us stories we had never known. In death, those we love become more than we understood, more than we can ever remember alone. Adichie appreciates this power. She had always meant to interview her father at length, to record him as he retold and recounted the tales of his childhood, his parents and his grandparents. “I kept planning to, thinking we had time,” she laments. But others can help fill in those spots. “Concrete and sincere memories from those who knew him comfort the most,” Adichie writes. This is another way to settle accounts, one in which the community repays you many times over.

“Part of grief’s tyranny is that it robs you of remembering the things that matter,” the author writes, and I wonder if, in a deadly pandemic, such theft is even more prevalent. Yes, not all deaths in the time of covid are covid deaths, but not all covid deaths should be remembered solely for the crisis that brought them on, one more statistic in a global tragedy that we all just want to get past. They deserve more respect than that. Collective exhaustion should not rob them of individual grief.

Complete Article HERE!