It was during the middle of last year when Katherine Icardi-Lazareff, 67, who until then enjoyed regularly practicing running and swimming, first felt the symptoms, which began with occasional falls. It was in September, and after a series of medical tests, that she was finally diagnosed as suffering from motor neurone disease, a neurodegenerative condition otherwise known as amyotrophic lateral sclerosis.
The disease, for which there is no known cure, involves the loss of control of voluntary muscles, causing difficulties with walking and gripping, and which progresses to a total loss of mobility, difficulties in swallowing, the inability to communicate properly and severe breathing problems. In a small proportion of cases, it is also associated with a form of dementia that affects personality and behaviour. While for some the progression can last many years, on average it leads to death after between two and four years.
“In my case, the evolution is rapid,” explained Icardi-Lazareff, a mother and grandmother, who now uses a wheelchair. “I cannot move or walk. It is an enormous psychological suffering.” She has made clear that she prefers “to die with dignity” and to end her life before the disease reaches its final stages. “I am combative, but I cannot put up with suffering and degradation,” she said.
In France, where euthanasia and assisted suicide is outlawed, legislation introduced in 2016, called the Claeys-Leonetti law, allows for the right of a patient to request and receive “deep and continuous sedation” leading to death when their medical condition is established as being severe and incurable in the short term, defined as being at an “advanced and terminal stage”. In certain cases, doctors are also allowed to end life support treatment when a patient, typically in a coma, has no possibility of recovery.
In September this year, France’s national consultative committee for ethics, the CCNE, which advises on ethical issues in the fields of medicine, healthcare and biology, published a report which gave its cautious backing for an eventual change in the law to extend the right to die for patients whose condition is considered severe and incurable beyond the short term, opening the door to the possible legalisation of euthanasia and assisted suicide.
During his re-election campaign this year, Emmanuel Macron pledged to launch consultations on reforming the current legislation, a move he is in favour of. That has led to the launch this month of a “Citizens’ Convention” to study the issue. The convention, organised under the auspices of the economic, social and environmental council (the CESE), a public advisory body, will bring together 150 French citizens, chosen as representative of the public at large, and healthcare professionals. Their conclusions will be delivered next March.
In parallel, public debates are to be organised by local authorities around the country. The government is also due to open discussions with cross-party members of both houses of parliament on a reform of legislation, which it hopes to promulgate by the end of 2023.
Enlargement : Illustration 1
But neither the existing law, nor the future prospect of legalising assisted suicide or euthanasia now under discussion, concern the situation in which Katherine Icardi-Lazareff now finds herself. As a result, she said she “very rapidly” had the idea of seeking a solution in Belgium where, in April this year, she met with François Damas, the head of intensive care at the Citadelle hospital in Liège, and who is also the president of the establishment’s ethics committee. Icardi-Lazareff said that since that meeting, “I feel lighter”.
She also sought advice from the Association pour le droit de mourir dans la dignité (association for the right to die in dignity), a Paris-based association which urges the legalisation of euthanasia in France. Last year it received, along with 125 letters and 285 emails, 2,493 phone calls on its hotlines from people seeking information on the subject. Of those calls, 236 were concerned with how to find medically assisted help abroad for an end to life, and principally in Belgium.
In 2021, a total of 2,700 people ended their lives by euthanasia in Belgium, where the practice has been legal since 2002. Each case is strictly vetted by the country’s “Federal commission of control and evaluation of the law relative to euthanasia”, the CFCFE. Out of that total, the CFCFE recorded the applications of 40 French nationals. In practice, many of those individuals in France who consider ending their lives under medical assistance in Belgium either later change opinion or die before they have taken the step.
The process is expensive and can be logistically complicated. There is the cost of transport from France to Belgium, notably when this is by ambulance, that of accommodation, and, if cremation is not chosen, the repatriation of the body, which French regulations demand must, as in the case of all those who die abroad, be made in a lead-lined coffin. There is also the length of the journey to Belgium, when possible, to make the preparations; in the case of Katherine Icardi-Lazareff, it took her four hours to travel from Paris to her appointment at the hospital in Liège but, for example, the same trip for someone in southern France would amount to a gruelling 11 hours.
It is a different story for those who live in north-east France, close to the border with Belgium, part of seven administrative zones, known as ZOASTS, which allow preferential access to cross-border healthcare across a region comprising neighbouring parts of France, Belgium and Luxembourg. In practice, these allow for people from areas in north-east France with few local hospitals or other healthcare structures to seek medical attention in Belgium using their French national healthcare payment smart card, the carte vitale, without having to pay up front.
François Guillemot is a retired gastroenterologist based in France’s north-east Nord département (county) that sits on the border with Belgium. Since retiring, he has been active in palliative care, which has involved him in lengthy discussions about the laws in France and Belgium with patients whose suffering has become unbearable. He said that very few in fact finally decide to seek an appointment in Belgium.
For those who do however, he will act as an intermediary by sending to the relevant Belgian doctors very detailed medical files, and will eventually accompany the patient to Belgium for consultations. In the event that they have so chosen, he will be present for the final act of putting an end to their lives.
The involvement of French doctors provides their Belgian counterparts with greater assurance in such cases. “They know that the medical aspect and the legislative criteria are watertight,” he commented.
Before turning to Belgium, Katherine Icardi-Lazareff initially considered seeking help to end her life in Switzerland, where assisted suicide, including for foreign nationals, has been legal since 1998 (euthanasia is outlawed). Unlike in Belgium, the act is legal for those who have cognitive or psychological illnesses, as long as they are considered to have discernment in making their choice. Because of the large numbers of foreign nationals who have recourse to assisted suicide in Switzerland, the practice has been insensitively dubbed by some as ‘suicide tourism’.
Under Swiss law, the act that causes death must be performed by the person who wishes to die, and Icardi-Lazareff discovered that in her particular circumstances meeting that stipulation would be uncertain. “Motor neurone disease does not allow me to, because one must operate a lever oneself and I don’t know in what state I’ll be in at that moment,” said Icardi-Lazareff. “I already have a lot of difficulty in using my hand.”
In its report in September, France’s national consultative committee for ethics, the CCNE, concluded that legalising euthanasia was preferable to the conditions of assisted suicide. “To leave outside of the law those who are not physically apt to carry out such an act would raise an ethical problem of equality between citizens,” it noted.
For those seeking assisted suicide in Switzerland, several non-profit associations offer advice and the facilities to do so, including Dignitas, Lifecircle, Exit International, and Pegasos.
“In 2021, about 500 foreigners, including 200 French nationals from across the four associations resorted to assisted suicide,” said general practitioner Erika Preisig, president of Lifecircle, and who is based in the Swiss city of Basle. On average, the association assists with the suicides of 80 people each year. “We could take on many more, but it would be too much work.”
Once again, the financial outlay required for committing assisted suicide is a barrier for many. On average, the essential cost is 10,000 Swiss francs (about 10,260 euros), which covers funeral services, administrative papers, and an international death certificate. On top of that are the travelling and accommodation costs.
“The French [nationals] come from all over France,” said Preisig, whose father, suffering from an incurable disease, ended his life in an assisted suicide. “But if they live in Mulhouse or Belfort [editor’s note, cities close to the Swiss border] I can travel to see them at home to evaluate their condition. I travel three or four times a year to the neighbouring regions and to Paris.”
In reality, euthanasia, although illegal, is practiced in France although the exact number of cases is not known. The only official estimation available is a 2012 report by France’s National Institute of Demographic Studies, the INED. The institute, a public body, asked thousands of doctors who signed 4,723 death certificates in 2010 to fill in a questionnaire, in which it emerged that, out of that total, 0.6% were caused by euthanasia, of which 0.2% involved substances deliberately administered by medics (11 cases).
For Katherine Icardi-Lazareff, choosing that option was out of the question. “I don’t want to place a doctor in a dilemma, because it’s reprehensible,” she said. “I take on my responsibility, and I’m going abroad. But I regret that it is prohibited in France.”
Retired gastroenterologist François Guillemot said he had witnessed colleagues “in the 1980s and 1990s” administer “a lethal cocktail” of drugs to patients who were in a state of great suffering, without necessarily beforehand gaining their consent. “That made me feel shame, and it shook me up enough to decide to personally participate in medically assisted death [but] at the request of a patient,” he explained. “There are many of us who did so. When there is a dialogue, [with] early and repeated requests and well-written instructions from the patient, along with the agreement of the family and the collegial ascent of all the medical team, I think that we have all the means to go along with this wish. When all the conditions are met, this no longer presents me with a philosophical problem.”
“One can have a palliative approach and accept a request for euthanasia,” he added. “The decision must be refocused around the person, it’s not for the doctor or philosophers to decide. Euthanasia is not an aid for death, but rather an aid to fulfil one’s choice.”
Katherine Icardi-Lazareff and Belgian doctor François Damas now plan to communicate again by video conference in early 2023. She said she will make the final journey to Liège “as soon as things become too hard”. She believes it is essential that the accounts of those who, like her, are forced to contemplate the end of their lives should be heard by the forthcoming citizens’ convention.
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- The original French version of this report can be found here.
English version, with some added reporting, by Graham Tearse