End of life: what “helping to die” means

“HELP to die?” “Active assistance in dying”? “Active chosen death”? The ongoing lexical battle to develop the legislative arsenal on the end of life has nothing to do with literary vanity. Whether you are a parliamentarian, a caregiver, a member of an association (and sometimes all three at the same time), every word counts to assert your point of view. But not everyone has the same weight. “Since the 1980s, we have seen the adjectives “active”, “passive”. But what would “passive” aid be? People no longer understand anything,” observes theologian and ethicist Marie-Dominique Trébuchet.

And to emphasize that in “active assistance in dying”, “it is “help” that we hear first. Just as in “assisted suicide”, we mean “kindness, compassion”. “I prefer the more explicit term “induced death”” adds Dr. Claire Fourcade, president of the French Society for Support and Palliative Care (Sfap).

That suffering with no way out can crush the sick, despair those close to them, leave caregivers destitute; There is rather consensus that palliative care cannot respond to all situations of distress. But the disappearance announced in the bill of the words euthanasia and suicide (currently included in “assisted dying”) raises questions. When it comes to such serious issues, wouldn’t it be better to call things by their name?

“It is an illusion to believe that an inflation of laws will allow us to foresee everything, control everything, or even eradicate all suffering. To suggest that death is something simple is misleading,” warns Marie-Dominique Trébuchet. Even the expression “end of life”, a priori not very conflicting, deserves attention: is it the last medicalized weeks which precede death, in which case it is the word “end” – and its countdown – who seems to win? Or the time of tipping into dependence, which then needs to be lived in over time?

While the Citizens’ Convention on the end of life voted 75.6% in favor of “active assistance in dying”; while in June, 15 caregiver organizations expressed their opposition to the decriminalization of euthanasia, even if strictly regulated, the delegate minister responsible for carrying the bill, Agnès Firmin Le Bodo, knows that the future text will be scrutinized at to the comma.

However, for twenty years, and even almost forty for palliative care, ministerial circulars and laws have been piling up without always giving time for reflection to mature. Wouldn’t having, as Marie-Dominique Trébuchet recommends, the “courage of prudence on these questions which involve much more than us” be a better option than legislating as quickly as possible? The fact remains that Emmanuel Macron made this law a flagship measure of his second five-year term. The political agenda has its demands which do not always meet those of reason.

DIGNITY

This word covers two meanings: the inalienable dignity of each human being, as designated in the Universal Declaration of Human Rights, a notion shared by Christianity. And the “feeling of dignity”, which can lead to feeling “less worthy” in certain situations.

“Because he is in the image of God, the human individual has the dignity of a person; he is not just something, but someone. » Catechism of Catholic Church § 357.

Is there an intrinsic dignity of the human being and, if so, when does it begin and where does it end? This question, posed on the status of the embryo, is reactivated at the other end of life by demographic and medical developments. Living for a long time with a disabling and often degenerative illness acutely raises the question of quality of life, sometimes confused with that of dignity. “It is up to everyone to exercise their dignity as they wish, including by planning their own death” tends to impose itself in public opinion. At the risk of forgetting that the loss of autonomy can also be experienced with dignity.

EUTHANASIA

Administration of lethal substances with the intention of causing death, to end the suffering of a person who wishes to die or, in the absence of their consent, by decision of third parties (medical professionals, relatives). To date, French law prohibits euthanasia, classified as homicide.

• They said it “Legalizing euthanasia is the most humanist decision possible. » Jean-Luc Romero, president of the ADMD (France 24, January 2019).

“Euthanasia does not eliminate suffering, it eliminates people. Its legalization leaves the scandal of untreated suffering intact, even though we must continue to fight. » Nicolas Aumonier, philosopher of science (La Croix, December 2021).

French law has been evolving for several decades to better respond to critical end-of-life situations. In 2005, the Leonetti law prohibited “unreasonable obstinacy”, or therapeutic relentlessness. In 2016, the Claeys-Leonetti law authorized “deep and continuous sedation until death” when the vital prognosis was “in the short term”. By providing for the establishment of an “euthanasia exception” for certain pathologies (Charcot’s disease, in particular), the bill breaks, according to its opponents, a founding social taboo: the ban on killing. While weakening the bond of trust between doctors and patients. The future law, its supporters retort, could include a conscience clause allowing patients to be directed to a voluntary doctor. The fact remains that for a majority of caregivers, the act of causing death contravenes the Hippocratic oath, by which all doctors undertake to “never deliberately cause death”. We also note that, in countries authorizing euthanasia, the reasons for resorting to it, initially very restrictive, broaden considerably over the years (among others in Canada which, in March 2022, removed the notion of “death next” of its criteria). And that the control commissions often prove to be faulty. We cannot therefore dismiss the question of possible abuses.

PALLIATIVE CARE

Palliative care is intended “to relieve pain, soothe psychological suffering, safeguard the dignity of the sick person and support those around them” (Public Health Code). The law of June 9, 1999 established that “any sick person whose condition requires it (…) has the right to access palliative care”.

“The “bad death” feeds on the shortage of support and care personnel, the inequality of access to palliative care, the insufficient consideration of caregivers (…), and the taboo that still exists around death. » Jean-René Lecerf, president of the board of the National Solidarity Fund for Autonomy (The world, September 2023).

Despite five national plans over the past twenty-five years and real progress, access to palliative care remains unequal across France. According to the Court of Auditors, only half of the 380,000 patients who need it each year benefit from it. And 21 departments have no dedicated hospital unit, even if they are equipped with mobile teams and identified beds. In order to remedy this disparity, the bill would devote one of its three components to the development of palliative care. “Associating the latter with a law that would authorize the termination of life is an unwelcome combination,” reacts Claire Fourcade, president of Sfap, adding that “killing is not treatment.”

ASSISTED SUICIDE

It involves self-administering a lethal product, accompanied by an association, a loved one, a doctor, etc. Banned in France, this act is legal in Belgium and Switzerland.

• They said it “For the patient who wishes active assistance in dying, the request is to live the last act of their life (…) as an actor endowed with a certain degree of freedom. » Dr. Véronique D’Hondt, oncologist ( The world, January 2021).

“Wouldn’t the last ruse of our materialist society be to shelter behind the noble cause of individual self-determination to (…) lighten the burden of solidarity towards the oldest and most fragile of its members? » Jean-Marc Sauvé, former vice-president of the Council of State (The world, September 2023).

Faced with therapeutic impasses experienced as unbearable (incurable illness, refractory pain), assisted suicide may appear as a possibility offered to the patient to regain the initiative. It would allow you to “choose your death”. But where does the primary injustice lie? Being deprived by illness or disability of the material possibility of committing suicide? Or find yourself in such a situation of suffering that suicide appears to be the only solution? As much as patient support is an incontestable right, “the right to be killed” raises questions. Firstly because this demand remains very marginal: “The overwhelming majority of people at the end of their lives do not ask to speed things up,” recalled Professor Gisèle Chvetzoff, oncologist, in an article published in April 2021 in The world . Then, because it involves the help of a third party in a gesture that is anything but trivial. Finally, and above all, because the freedom of decision is very variable: for a person whose mature determination is beyond doubt, how many patients convince themselves of being of no use, of costing too much, in short, of have become a burden on society? An existential distress that ethicists call “the living complex”.

* The patient, whose discernment must be “intact”, must be of age, express a “free and informed will”, and reiterate his request. The duration of the vital prognosis involved would be between six and twelve months.