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!

New research maps global assisted dying laws for the first time

Research shows the UK, France and Portugal in orange and other western countries such as Spain, Germany, and the Netherlands in blue

By Sinead Butler

A new study into worldwide laws on assisted dying has launched the first map of its kind to demonstrate the difference in policy around the globe.

Humanists UK have found that more countries have passed assisted dying laws – affecting over 250 million people – since MPs last debated proposals on changing the law in 2015.

The research also uncovered two predominant models of assisted dying internationally.

The first provides assistance to those who have six or fewer months left to live – found in New Zealand, and some parts of the United States and Australia.

While the second enables choice for both those who are terminally ill and incurably suffering.

This model can be found in Austria, Canada, Belgium, Italy, Germany, Luxembourg, the Netherlands, Spain, and Switzerland.

A similar bill is also currently under consideration in the Republic of Ireland.

Elsewhere, both euthanasia and assisted dying are illegal in the UK.

Helping someone to end their life is currently a criminal offence and carries a maximum penalty of 14 years imprisonment in England and Wales.

Though terminally ill patients in the UK do have the right to refuse treatments that might extend their life – controversially, this is sometimes referred to as “passive euthanasia.”

MPs previously debated changing assisted dying laws in 2015 but voted overwhelming against the proposal – with 330 voting against and 118 in favour.

The British Medical Association (BMA) has historically stated their opposition to assisted dying “in all its forms” being legalised and “believes that the ongoing improvement in palliative care allows patients to die with dignity.”

It also “insists” voluntary and non-voluntary euthanasia should not be made legal in the UK.

But if euthanasia were to be legalised, the BMA says “there should be a clear demarcation between those doctors who would be involved in it and those who would not.”

As the map shows more countries have passed assisted dying laws in recent years, Humanists UK want the government to revisit the right to die debate.

The charity’s Director of Public Affairs and Policy Richy Thompson has called on lawmakers “to pay close attention to the international consensus on assisted dying.”

“The publication of this map makes it clear like never before that the UK’s laws on assisted dying are in urgent need of review.

He added: “It is highly significant that in the years since our lawmakers last considered proposals on assisted dying, progressive countries around the world have continued to roll back their bans in the face of overwhelming evidence.”

“But it is also notable that on the rare occasions when assisted dying legislation has been considered in the UK Parliament, it has almost always excluded those who are incurably suffering, like Tony Nicklinson and Paul Lamb – which is at odds with most other jurisdictions’ laws.

“With several more countries now having passed or looking set to pass laws which will prioritise a person’s quality – not quantity – of life, we urge lawmakers in the UK to pay close attention to the international consensus on assisted dying and immediately conduct an inquiry into the law.”

Though the Care Not Killing alliance who oppose euthanasia has criticised the Humanists UK’s map.

Dr Gordon Macdonald, Chief Executive of Care Not Killing commented: “We do not have “passive” euthanasia in this country and to suggest this is grossly misleading and wrong in law.”

He added: “What this map fails to do is to show the widespread discrimination against the elderly and disabled people, wherever euthanasia and assisted suicide (EAS) has been legalised, or how the laws have changed over time.

“We only have to look at the Netherlands and Belgium which introduced laws for terminally ill mentally competent adults or those suffering unbearable pain. Now both countries regularly kill disabled people, those with chronic conditions, individuals with mental health problems, such as patients with dementia, depression, anorexia even a victim of sexual abuse, non-mentally competent children and babies and want to extend this further to those tired of life.”

“Neither does this map show how in jurisdictions like the US State of Oregon, six in ten (59 per cent) of those ending their lives in 2019 cited the fear of being a burden on their families as a reason and further 7.4 per cent cited financial worries. While in Canada, 1,412 people cited loneliness as a reason for having their lives ended.

“There are other problems too. It fails to mention the growing body of research showing legalising EAS can lead to an increase in the suicide rate in the general population. As one major study from Oregon noted, legalising Physician Assisted Suicide was associated with an increase of 6.3 per cent in the number of suicides, once all other factors had been controlled. Among over 65s the figure was more than double that.”

Dr Macdonald concluded: “No, there is nothing progressive about legalising EAS. Quite the contrary.

“At a time when we have seen how fragile our health care system is, how underfunding puts pressure on services and when up to one in four Brits who would benefit from palliative care but does not currently receive it, pushing an extreme ideological policy not only is the height of folly but incredibly dangerous. ”

Recently in Scotland, a new bill to legalise assisted dying was lodged on June 21 at the Scottish Parliament, the BBC reported.

The bill aims to legalise assisted dying for terminally ill, mentally competent adults.

Although previous attempts to change the law have failed, a cross-party group of MSPs have signed an open letter in support of the bill.

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!

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.

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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!

Why is access to medically assisted death a legislated right, but access to palliative care isn’t?

By

John started his first appointment in the Neuropalliative Care Clinic with, “I want to talk about MAID.” In our clinic, his request for medical assistance in dying is common. As legislated by government, I referred him to the MAID navigator. I had one request: that John wait to make his MAID decision until after seeing a community palliative care physician.

At his next appointment, John informed us he had withdrawn his MAID request because his primary symptom —pain — was now well controlled after our suggestions and those of the community palliative care doctor. John lived for two more years, during which he became closer with his daughter and continued to enjoy the company of his siblings.

John is not unusual. Neurologic illness accounts for 18 per cent of deaths in the Canada but rarely has palliative care involvement. By contrast, cancer accounts for 20 to 30 per cent of deaths, but typically receives 75 per cent of palliative care.

Part of the challenge is that palliative care services are often hospital-based, but most people who could benefit get their care in the community. Similarly, patients have recently refused palliative care in the belief that is the same as MAID. In 2017, MAID accounted for 1.07 per cent of deaths in Canada, increasing to two per cent in 2019.

In June 2016, the passed legislation that gave all eligible Canadians the right to request MAID. Colleges of Physicians and Surgeons required physicians to refer people who request MAID to services or arrange for a physician who would make the referral.

A male doctor consulting with an older female patient
The workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.

Since then, every province and territory devoted resources to navigate requests and assessments for MAID. Typically, provinces have a website for self-referral, easily found by internet search and/or dedicated health-care staff to help navigate the MAID process or inform those who are MAID-curious.

Complicated referrals

By contrast, the referral process for palliative care is often convoluted. Many provincial web pages simply give a definition of palliative care (some confuse the issue by including the MAID navigation site) but do not provide a central access point for physicians or nurses. Referral forms (where available) are complex, which creates another barrier to access. Many palliative care programs have an unofficial prognosis of three to six months’ life expectancy for services, despite research demonstrating that early palliative care improves outcomes and in fact, can prolong life.

What is the disconnect? Health-care providers are an unexpected barrier as they often cling to the belief that palliative care is for the imminently dying or means to give up hope. For the public, palliative care means dying soon.

But modern palliative care is about living well now, meeting patients’ goals and finding meaning in life. For John, we helped him set goals, focused on the positive in his life, like his better relationships with his children and ongoing closeness with his siblings. His sharp sense of humour emerged despite communication challenges.

Additionally, many palliative care programs exist in the oncology (cancer) department and thus, their focus is cancer-based. Twenty per cent of people die from cancer, but receive 75 per cent of palliative care services. Current training for palliative care physicians requires exposure to other patient populations like heart failure, kidney failure and neurologic illnesses, but health-care systems are slow to change.

A man in a hospital bed and a woman holding his hand, listening to a doctor whose back is to the camera.
Placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult.

And finally, the workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.

Making palliative care more accessible

The solution requires a multi-faceted approach. All health-care providers need to have general palliative care skills because, in the way we all learn to control blood pressure and read a basic electrocardiogram, palliative care is part of good medical care.

At a systems level, placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult for patients and clinicians. Given the broader applicability of palliative care, it is time for palliative care to become an independent department. Up to 28 per cent of Canadians will be seniors, which means more people with multiple, chronic conditions that could benefit from a palliative approach.

Building the palliative care workforce is essential. The palliative care workforce in Canada is estimated to be 773 doctors for a population of 39 million. Once the palliative care workforce is established, educating the public that palliative care includes a holistic approach to wellness and meaning in life can help re-frame and increase acceptance.

There are more people like John who should connect with a palliative care team before walking down the road to MAID. Let palliative care help you live well, now.

Complete Article HERE!

Liberal Judaism, Modern Church join new Religious Alliance for Dignity in Dying

  • New group of interfaith leaders and laypeople following more than a dozen denominations call for change in law on assisted dying
  • Poll finds 53% people of faith felt religious leaders were wrong to campaign against last assisted dying bill, while just 22% felt it was right
  • Christian man who accompanied wife to Dignitas welcomes new Alliance

Liberal Judaism, a progressive strand of Judaism, and the Modern Church, an Anglican society promoting liberal Christian theology, are the latest faith organisations to join the new Religious Alliance for Dignity in Dying, a collection of multi-faith groups, leaders and laypeople calling for a change in the law on assisted dying. Lord Carey, the former Archbishop of Canterbury, has also joined the Alliance and the Chief Officer of the Unitarians has recognised the strong support among many of their members. The Alliance is also welcomed by a Christian man who accompanied his terminally ill wife to Dignitas in 2019 at her request.

The Religious Alliance for Dignity in Dying is formed of religious organisations, leaders and people who follow more than a dozen different denominations and who support a change in the law to enable terminally ill people the ability to determine how, when and where they die alongside high quality end of life care. This comes as a private member’s bill on assisted dying was introduced to the House of Lords last month by Baroness Meacher, Chair of Dignity in Dying, paving the way for the first debate on prospective legislation in Parliament for more than five years.

In a YouGov poll of 5,039 adults published yesterday, 53% of religious people felt it was wrong for religious leaders to actively campaign against an assisted dying bill that was debated in the House of Commons in 2015, with just 22% saying they felt it was right for them to do so.

Faith leaders including the Archbishop of Canterbury and the Archbishop of Westminster wrote to MPs in September 2015 to urge them to oppose the Second Reading of the assisted dying bill in the House of Commons. The bill was based on one introduced by Lord Falconer in 2014, which was supported by Peers both at Second Reading and at Committee Stage, where two opposition amendments were defeated by large margins. Unfortunately, the parliamentary session ended before it could progress further. Baroness Meacher’s bill, also based on Lord Falconer’s bill, was drawn seventh in the House of Lords private members’ ballot last month and a Second Reading is expected in the autumn.

A 2019 Populus poll found that approximately 80% of religious people (and 84% of the general public) support the change proposed in Baroness Meacher’s bill – namely that terminally ill, mentally competent adults in their final months would be able to request an assisted death, subject to approval from two independent doctors and a High Court judge.

Similar legislation has been in place in Oregon, USA for over 23 years, and has since been adopted by nine other American states plus the District of Columbia, three Australian states and New Zealand.

The Religious Alliance for Dignity in Dying brings together followers of the Church of England, Church of Scotland, Church of Wales, Catholicism, Baptism, Evangelism, Methodism, Unitarianism, United Reformed Church, Quakerism, Liberal Judaism, Reform Judaism and Sunni Islam.

Rabbi Charley Baginsky, Chief Executive of Liberal Judaism, said: “Liberal Judaism has a proud history of being at the forefront of progressive societal change, speaking up for much-needed liberal reforms with compassion at their heart. Much like votes for women or equal marriage – rights which now seem unchallengeable – assisted dying is a right we are proud to champion for people nearing the end of their life.”

Rabbi Danny Rich, Liberal Judaism rabbi with responsibility for hospital and prison chaplaincy and former Chief Executive of Liberal Judaism, said: “I have long been an advocate of the right of terminally ill individuals, subject to appropriate safeguards, to decide the manner and timing of their own deaths. Twenty-seven years ago my own great uncle, suffering with inoperable cancer, ended his own life with help from a relative. That dying people are still forced to contemplate dying by suicide as an alternative to a traumatic or prolonged death by their disease is shameful. I add my voice to the growing number calling for true choice and control at the end of life.”

Alan Race, Chair of the Modern Church, said: “Christians place high value on human dignity and compassion and believe we should relieve suffering where possible. We welcome medical intervention in order to relieve pain, especially when suffering becomes unbearable. Relationship with God is a freely chosen commitment and this means that we do not leave it to God to determine the time of death. Trusting in God’s unlimited compassion therefore includes the desire to relieve unbearable suffering at the end of life. In practical terms, granting permission for assisted dying often has the effect of releasing renewed spirituality for living a more fulfilled life prior to death itself.” 

Lord Carey, former Archbishop of Canterbury, said: “For too long we have turned a blind eye to the suffering inflicted on terminally ill people by the ban on assisted dying. Compassion, a central tenet of the Christian faith, should not be a crime, and yet under the current law it is treated as such. I believe a change to the law is urgently needed to enable our dying citizens the ability to go as they wish. To my mind, this is the moral, and the Christian, thing to do.”

Liz Slade, Chief Officer of the Unitarians, said: “The Unitarian movement voted in 2013 on the issue of assisted dying; in our recognition of the worth the dignity of all people and their freedom to believe as their consciences dictate, members voted to support the principle that individuals should have the right to seek support for assisted dying in certain circumstances, and that legislation should respect this choice and allow them compassionate assistance without fear of prosecution of anyone involved. Many Unitarians are passionately in favour of a change in the law, while recognising the need to allow a diversity of voices to be considered on this important moral issue.”

Rabbi Dr Jonathan Romain, Chair of the Religious Alliance for Dignity in Dying, said: “This new Alliance is a truly multi-faith rallying call for a compassionate, safeguarded law on assisted dying for the UK.

“In the 60 years since the blanket ban has been in place, medical advances have done wonders in prolonging life, but this often means prolonging the dying process too, causing suffering that may be beyond the reach of palliative care. Religious teaching evolves to deal with the challenges of modern life, so too should the options we offer people when they reach the end of it. That we continue to deny our dying citizens a choice that is now available in states and nations around the world is morally indefensible. It’s time to have a national debate on assisted dying that respects all views while recognising the strong support among religious people.”

Len Taphouse, 81, a former lecturer in engineering and father of three from Hornchurch, is a member of the Church of England and welcomes the new Religious Alliance for Dignity in Dying. Len accompanied his wife of 55 years, Stella, to die at Dignitas in Switzerland at her request in August 2019. Stella was terminally ill with Parkinson’s disease and breast cancer, and in previous years had been diagnosed with cancer of the womb and skin.

Len said: “I was brought up as a regular church-goer, and in 2014 Stella and I renewed our vows 50 years later in the very same church we got married in. Neither of us found our faith a barrier to supporting Stella’s decision, quite the opposite. But this option should have been available here at home. Stella should not have had to spend £11,000 and my daughters and I should not have had to break the law and risk prosecution to accompany her in her final moments. It’s time the law was changed so that people like Stella can die as they wish in this country, surrounded by those they love, in their own bed.”

Tom Davies, Director of Campaigns and Communications at Dignity in Dying, said: “Medical organisations are increasingly recognising the range of views among their members, with doctors accepting that whatever their personal opinion they cannot deny their dying patients the choices they want. Religious organisations and faith leaders are now doing the same, recognising the support for change among their congregations and putting the choice and autonomy of those at the end of life before doctrine.

“With an assisted dying bill in the House of Lords, the Health Secretary commissioning data on suicides by terminally ill people, Scotland due to consult on potential legislation and Jersey conducting a citizen’s jury on the subject, it is essential that parliamentarians across the British Isles understand that the vast majority of the pubic, with faith and without, want change.”

Complete Article HERE!