Yves here. This article points out that the perhaps undue eagerness of French pundits and pols to support assisted dying is coming at the expense of adequate funding and programs for palliative care.
In the US, for many, the situation is if anything worse. There seems to be a taboo, at least among some practitioners. My father had a terminal illness that years become very painful and debilitating. His father had spent the last nine years of his life blind in a nursing home. My father was unwilling to wind up bedridden and dependent. Perhaps if someone had given him an idea of what end of life care might look like, he might have been willing to get help. He instead shot himself.
By Anna Magdalena Elsner, an associate professor of medical humanities at the University of St. Gallen, Switzerland who is the principal investigator of Assisted Lab, a European Research Council (ERC) Grant investigating the aesthetics, laws, and ethics of assisted dying, and Jordan Owen McCullough who holds a Ph.D. in French Studies from Queen’s University Belfast, is a postdoctoral researcher in the ERC Assisted Lab at the University of St. Gallen, Switzerland, and associate editor of The Polyphony. Originally published at Undark
Between December 2022 and April 2023, 184 randomly selected French citizens assembled to reflect on a central problem of the nation’s health care system: Is the current model of end-of-life care working and, if not, what changes should be introduced?
On April 3, the group, known as the Citizens’ Assembly on the End of Life, presented the French president, Emmanuel Macron, with its final report. The vast majority of the Assembly, 97 percent, deemed the current model of end-of-life care in France insufficient, and more than three-quarters said they would support new measures to legalize euthanasia, assisted suicide, or both.
The French public and media have latched on to that last point, portraying the Assembly’s work as a referendum on assisted dying. In a recent issue of the French weekly news magazine L’Obs, prominent public intellectuals — including actors, filmmakers, university professors, and the mayor of Paris — penned an open letter calling on French president Emmanuel Macron and prime minister Elisabeth Borne to legalize assistance in dying. “Every year,” they wrote, “French men and women suffering from serious and incurable diseases are confronted with physical and moral suffering that treatments can no longer relieve.” The national discourse, however, misses an important point: The rising public support for assisted dying reflects our deeper failure, as a society, to adequately care for the living.
The provision of palliative care — care that seeks to maximize the quality of life for people living with serious or terminal illnesses, without hastening death — remains markedly underfunded and undersupported in France. The concept was first discussed in legislative settings in the mid-1980s, but it was not until 1999 that palliative care became a right for every French citizen. In 2005, the so-called Léonetti Law expanded these end-of-life rights to allow patients with severely life-limited prognoses the option to forego treatment — or to stop treatments that were already underway. In 2016, France introduced the Claeys-Léonetti Law, which remains the governing principle for contemporary palliative care in France. This law, presented as a specifically “French response” to a rising demand to legalize assistance in dying, permits physicians, at the request of the patient, to administer palliative sedation to people who are in the final stages of a terminal illness, or who have decided to cease treatment and face the prospect of “unbearable suffering.” With the law, France became one of the first countries in the world to make terminal sedation legal.
However, palliative sedation — currently the final recourse for French palliative care physicians — is distinct from assisted dying. It is administered to alleviate suffering, not to hasten death, whereas assisted dying is an active decision, on the part of the patient and their physicians, to bring life to an end. The French terminology, “aide active à mourir,” or “active assistance in dying,” captures this well. (By contrast, francophone Canada has opted for “aide médicale à mourir ,” or “medical assistance in dying” — although the anglophone acronym, MAID, undoubtedly played a role in that choice.)
Some argue that palliative sedation does not go far enough and that current eligibility requirements for the procedure are too strict. But a more fundamental question is whether existing palliative care services receive adequate support.
President Macron has promised significant funding increases for palliative care services in France over the next 10 years, and few would deny that they are desperately needed. Of the 101 departments, or geographic districts, that France comprises, roughly a quarter have no distinct palliative care units. That, coupled with inadequate human resources and lack of specialist training, means that, according to Claire Fourcade, president of the French Society for Palliative Care and Support, two thirds of patients in Francetoday have restricted access to palliative care. Yet the voices of palliative care professionals calling for increased funding have been notably absent from the public discourse around the Citizens’ Assembly.
Proponents of legalizing assisted dying argue that that issue is philosophically and politically distinct from the matter of improving palliative care. But the two ideas are connected: The reasons that many French people give for wanting a change in the law are intimately related to the distressing ways in which they are seeing people die today.
A series of articles in the recent issue of L’Obs, many of them written by relatives and friends of people who sought an assisted death outside of France, illustrate that point with heartbreaking clarity. One of the most moving stories is that of Roxane Guichard, the daughter of Anne Bert, a French author who travelled to Belgium in 2017 to end her life. (Bert published her story in a memoir titled “Le tout dernier été ,” or “The Very Last Summer.”) Guichard expresses the trauma of that final trip to Belgium. She describes the journey as a form of exile — not only for Bert but for herself and her father — that only added to everyone’s suffering. The image of the three of them journeying to Belgium by train, knowing that there would be an empty seat on the return trip, is powerful. They had been literally “uprooted” from their homeland — as Guichard puts it, using the original French term “déraciné” — and transported to a “parallel universe” in which Bert could exercise her autonomy to choose her own form of dignified death. Bert states in her memoir, it was not that she wanted to travel to Belgium, but that she dreamt of a “different medicine,” one that “takes care of the soul” when the body can no longer be cured.
As sociologist Nicolas Menet recently argued, “We mustn’t reduce the question of end of life to a debate around whether or not to legalize euthanasia.” Rather, he said, “we need to discuss the financing of palliative care and value that care provision. We also need to discuss what palliative sedation really means.”
In other words, improving end-of-life care in France, or anywhere for that matter, will require us to think holistically about the issues at hand, rather than look to assisted suicide and euthanasia as panaceas. (Writer and journalist Abnousse Shalmani also makes this point in a recent column for L’Express.)
Emmanuel Macron has promised a draft bill on end-of-life care by as early as the end of summer. What will the president do with the recommendations put forward by the Citizens’ Assembly? It seems likely that the government will legalize some form of active assistance in dying. However, one cannot help but wonder what challenges lie ahead. Will legalization attempts prove more problematic than the government imagines? Will it cause more issues than it will solve?
What the French Citizens’ Assembly report does not comment on is how much people’s own stories and experiences of dying factor into the normative arguments informing their point of view on assistance in dying. These stories are important points of reference that inform the law-making process. We must pay close attention to them.
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Props to the French for having what sounds like a very sober societal conversation on these issues.
As compared to the US, where the craziest religious superstitions keep polluting the dialogue.
The craziness isn’t limited to old religions. What about the idea that one can “download my consciousness” to a computer and thereby attain immortality? That’s worse than the even older “freeze me till they find a cure” sales pitch. That worked on Star Trek, sorta.
Futurama? Even the, Fry initially ended up in a suicide booth with Bender…
Yeah, a word about that ‘end-of-life’ care mentioned here. I saw how that worked with my mother-in-law. They parked her in a bed, put a drip on her to keep her out of it with drugs, and gave her no food nor even water. So I find that the word “care” can have all sorts of novel meanings, especially medically. When my wife told me what was happening – who sat by her side that week – I could scarcely believe it.
That sounds odd. Withholding food and water from a patient sounds like homicide – or had your mother-in-law requested that?
VSED (Voluntary Stopping of Eating and Drinking) is a common preference of terminal patients who wish to hasten their death – and normally they receive medication to ease the discomforts that can arise from this process. And I believe it is legal in all states in the US.
I had read that of all the patients in Oregon who had gone through all the hoops to receive permission for Physician-Assisted Suicide, more than half of them ultimately never took the medication they had received permission for – and instead opted for VSED as their means to hasten death.
RE: “more than half of them ultimately never took the medication they had received-and instead opted for VSED as their means to hasten death.”
The Oregon law gives the dying one the option of ending one’s own life humanely should the suffering and/or physical degradation of the body become too much to needlessly bear. The choice to take the fatal dose is left to the patient who must be able to ingest the potion without any assistance.
Unfortunately, the law requires that one has “… an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months.”
This provides no relief to those suffering the long decline of the disease processes of e.g. prostate cancer or the inevitable mental and physical decline of Parkinson’s or ALS.
Is it that the Sanctity of Life zealots are meshing with the ‘head count’ industries?
Every day a person’s existence persists equates to more billable hours, receivables… whether from The State, or in America, the Insurors. It does seem that the business model of insuring the health of a mortal being has a fairly simple profound flaw.
Almost like funding the maintenance of graveyards… a dying business model, as it were.
It’s been said that the last six months of ‘life’ dissipate the average persons life savings and wealth. And, after all, that is what we aspire to… more money, more wealth…. what’s yours is now mine.
No answers here- but it sure would be cheap and easy to get some of that fentanyl out to folks— but we cannot allow freedom and personal choice, despite our exhortations that folks be personally responsible.
I have a dear old friend on Dialysis… he is exhausted by the routine, and dealing with these ponderables in the first-person.
As my son’s t-shirt says,
Embrace The Suck
She never requested that at all as what put her in hospital was sudden and unexpected – and fatal. My wife kept on moistening her lips with water but that was all she got. I do not know how widespread this practice is or whether this was just that one hospital but it happened.
It may be an issue around being able to swallow safely. Swallowing is actually a really complex maneuver and cognitive issues (even decreased wakefulness) can have you aspirating (food or water into the lungs). A recipe for pneumonia and uncomfortable requirements for air.
To overcome swallowing issues you need a tube in your nose or through your abdomen. This usually starts to look like too much intervention for end of life. You tend to check out pretty fast when you stop getting fluids. So it becomes a question of what is the objective of treatment and what is kinder (dragging out the end of life via adminstration of food and water may not be the best decision in terms of suffering). These issues aren’t always intuitive for those who haven’t been talked through the rationale.
>As sociologist Nicolas Menet recently argued, “We mustn’t reduce the question of end of life to a debate around whether or not to legalize euthanasia.” Rather, he said, “we need to discuss the financing of palliative care and value that care provision. We also need to discuss what palliative sedation really means.”
These quotes are the nut of the article. It is not a question of “either-or”, because the humane answer is both.
Around the turn of this century a dear friend had a stroke in a taxi (NYC) and asked the driver to take her to Mt. Sinai where, on arrival, she asked for “all aggressive measures” before suffering another, massive stroke. This led to a month in the ICU, on a ventilator, with the standard bright lights 24- hours a day, and young nurses rushing back and forth, calling to each other in loud voices that made me wince. At last, her family had her transferred to Cabrini, a hospital specializing in palliative care. Quiet, dimly lighted rooms, murmuring voices, sitting places for friends and family,. Peace.
We need hundreds of those.
>”…the standard bright lights 24- hours a day…”
Most healthcare institutions are run for the convenience of the staff, not the patients. Hence the bright lights, the loud voices. When my time comes give me, as you say, “Peace”.
Cabrini is a good place: a dear friend and many-decades neighbor was well cared-for there. Calvary in the Bronx is also staffed with skilled, kind and compassionate people..
Thanks for jogging my memory out of a confusion of hard “c” sounds..It was indeed Calvary where my friend spear the last week of her life.
At least France has a health care system, and health outcomes are far better than the US, while spending far less than the US (roughly 12% of GDP). At least they can have these conversations, and perhaps look to other countries like the Netherlands for models and examples. Countries with genuine health care systems will be much better able to deal with these issues.
As others have noted, the religious fundamentalists and the insurance/BigPharma extortion racket want to maintain the status-quo in the US. Health extortion is big business: 18-19% of GDP. No incentive to kill the golden goose.
The dysfunctional health extortion in the US is just getting more dysfunctional. Medicare does not cover skilled nursing or other long-term care. The conditions in these places, while obscenely expensive, are appalling – I have seen quite a few. I can look forward to bankruptcy, debt and a horrific end of life unless I am blessed with a quick death.
Or, on the “bright side”: we will leave the country again – it won’t be utopia, but healthcare will be more affordable.
Barely a mention of Canada and MAID just yet (seeing one in-passing comment in the body article).
Canada seems to be leading the way towards liquidation of those who are not economically producing enough for the “state’s” benefit (the “state” here seems to be some shrouded private pecuniary interests).
I haven’t seen the dark side of Canada’s regime discussed in sources that would be considered mainstream, but will toss out these decidedly non-mainstream links for initial reading:
https://notthebee.com/article/canada-has-been-euthanizing-its-poor-and-bioethicists-thinks-thats-the-right-thing-to-do
https://slaynews.com/news/canada-euthanize-disabled-homeless-woman/
Standard procedure avoids the big question. You get a form to fill out when you enter the hospital – a living will specifying if you want to receive hopeless care or die. When I filled out my form I said please do not extend my life, just cut me off and let me go. The better question would be to ask if you want a lethal dose of morphine to help you go out. That question might be implicit in palliative care, depending on protocols. I would have answered yes. Bill, on the other hand was hedging his bets all the way, putting that decision on next of kin. Which amuses me now remembering what a macho lunatic he was when he got back from Vietnam – “Just tie me on the back of a wild boar and light me on fire.”
I’m not trying to be cynical here, but it’s hard not to wonder if euthanasia will largely be pushed on people whose medical costs are paid for by the state, or unpaid, while futile use of resources to extend life by marginal amounts is, and will continue to be, automatically given to people whose medical care is paid for by private parties, when the medical care is delivered and billed by an entity unrelated to the payor (as is true in most of the USA).
For now, Medicare in the USA would be a partial exception to this theory, given that it uses public funds. And it’s a huge political football with a massive lobby (the AARP) trying to keep it in place and highly funded.
I agree 100% with Yves’ title and thesis.
For those outside the US, or living on the relatively liberal coasts, I urge you not to underestimate the depth and sincerity of beliefs among the midwestern and southern religious populations that euthanasia of any kind is wrong, both morally and religiously. I’m not saying they are right, or that their views are always internally consistent, or even defensible when rigorously scrutinized. But don’t think they are superficial or mere attempts to deflect. I mention this because this blog reaches a broad audience and I suspect some readers have spent little or no time around large and homogeneous groups of deeply religious people. I had not until well into my 30’s.
Finally, for those looking for a somewhat deeper Christian assessment of such questions, the Catholic Church in the USA (via the US Conference of Catholic Bishops) has a document providing guidance from their perspective. I am not Catholic or attempting to push this on anyone, but it does represent the collected thoughts of clergy in a large and influential Christian organization.
https://www.usccb.org/resources/ethical-and-religious-directives-catholic-healthcare-services
This is more of a detailed policy statement rather than an apologetic, but it is a starting point for further research.
I only had time to read one of their writings – the one which seemed most relevant – top 10 reasons for opposing assisted suicide. WOW, they are really dodging the question!
All of their reasons involved, in one way or another, the argument that assisted suicide is often not used appropriately – pressure from family, not everyone has access to great palliative care, etc. etc. I was really waiting for them to finally say “As long as the abuses of assisted suicide persist, we oppose it – but as long as the patient is competent and has access to good palliative care but still feels that the best care is not helping his/her pain etc. well enough and in a clear state of mind would prefer assisted suicide, then sure! We have no objections.”
Naturally I did not see that. :) Bottom line – I think the Church holds fast to the belief that “your life is NOT your life – it belongs to God, so you have no right to end it until God does.” I have no objection to anyone holding that as their personal belief and acting accordingly – but when they fight to have that belief applied to any and every patient who personally would prefer a peaceful end to their life, now, rather than persist in their untreatable suffering, I think they really need to STFU.
If the Church’s real concern is lack of good palliative care, then let’s see the Church sell off all of their art and gold and real estate and nice cathedrals and give all that money to support improved palliative care. I’m not holding my breath.
If the Church’s real concern is lack of good palliative care, then let’s see the Church sell off all of their art and gold and real estate and nice cathedrals and give all that money to support improved palliative care.
The churches are being sold off – to real estate developers and other financial extractors.
And to pay the judgments in the many, many cases of priestly abuse of vulnerable parishioners of various ages. One guess at the cost of these suits as of 2018 was $3 billion. https://www.wbur.org/npr/639698062/the-clergy-abuse-crisis-has-cost-the-catholic-church-3-billion There’s no doubt in my mind that it’s many multiples of that just in the legal realm, let alone “reputational damage” and loss of faith. As the article points out, in keeping with all the other institutional looting and abuse across the country and the world, it’s not the bishops and other high clerics that are hurt, it’s the parishioners. Excrement flowing downhill is now a sacrament in the Catholic Church and other religious structures — sexual predation is not limited to the Roman church but easy to find these days in every other denomination. One might also think of it as a “social disease” that spreads widely in the corrupt dark and enforced silence of “godly” institutions…plenty of it in the protest and denominations, and military and legislature and the administrative agencies and courts and every other fripping institution in our human pathology. https://www.theguardian.com/world/2022/jun/12/southern-baptist-church-sexual-abuse-scandal
“Suffer the little children…” https://www.pennlive.com/opinion/2023/05/citizens-must-stand-up-to-flawed-leaders-opinion.html