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Politics and science: the upcoming end-of-life legislation

Jean-François Delfraissy, Chairman of the French National Consultative Ethics Committee
On July 5th, 2023 |
3 min reading time
Jean-François Delfraissy
Chairman of the French National Consultative Ethics Committee
Key takeaways
  • A bill on ‘end-of-life ‘is due to be presented to the French government by September 21st
  • The issue is causing a stir in France, as it puts two major ethical principles into tension: individual freedom and solidarity.
  • Democratic dialogue between scientists on the one hand, and politicians and citizens on the other, is essential on these social issues.
  • The role of scientists is to shed light as neutrally as possible by providing accurate information, while the role of politicians is to make decisions.
  • The Comité consultatif national d'éthique (CCNE) is a kind of scientific compass for ethics, providing nuanced, well-argued opinions.

With a bill on end-of-life issues due to be pre­sent­ed by Sep­tem­ber 21st what is the role of scientists?

On sev­er­al cru­cial issues, French soci­ety has evolved enor­mous­ly over the last 50 years. Atti­tudes and beliefs have changed, some­times with the sup­port of politi­cians, some­times with­out. In the ear­ly 1980s, for exam­ple, politi­cians adopt­ed a posi­tion that was very much in the minor­i­ty when it came to abol­ish­ing the death penal­ty. So, I don’t know what the posi­tions of gov­ern­ment and par­lia­ment will be.

Does our death belong to us indi­vid­u­al­ly or to soci­ety as a whole?

As sci­en­tists, our pri­ma­ry task is to share what we know with cit­i­zens and politi­cians. We inform cit­i­zens by explain­ing the char­ac­ter­is­tics of pal­lia­tive care, its use and effec­tive­ness. We seek to answer the most dif­fi­cult ques­tions, the most dif­fi­cult dilem­mas, based on data, tes­ti­mo­ny, and expertise.

What is the role of the cit­i­zen in this type of debate?

By rely­ing on par­tic­i­pa­to­ry democ­ra­cy, it is pos­si­ble to resolve cer­tain dif­fi­cult sit­u­a­tions that put a strain on our democ­ra­cies. Lis­ten­ing to cit­i­zens is in no way opposed to elec­tive democ­ra­cy, on the con­trary, it com­ple­ments it: par­tic­i­pa­to­ry democ­ra­cy is an unde­ni­able asset to elec­tive democracy.

What is your vision of par­tic­i­pa­to­ry democracy? 

The ongo­ing debate on the end of life has made it pos­si­ble, with the Cit­i­zens’ Con­ven­tion and the many meet­ings orga­nized by the French Nation­al Con­sul­ta­tive Ethics Com­mit­tee (CCNE) in the regions – more than 330 meet­ings and 45,000 par­tic­i­pants – to inform and raise ques­tions and prob­lems, but also to ini­ti­ate dis­cus­sion in order to shed light on a num­ber of com­plex issues even before they are enshrined in law.

Inci­den­tal­ly, the text sub­mit­ted to the French Pres­i­dent by the Cit­i­zens’ Con­ven­tion goes fur­ther than that of the CCNE. It’s an exam­ple of par­tic­i­pa­to­ry democ­ra­cy that we’re find­ing hard to imple­ment in France, but which, para­dox­i­cal­ly, we’re well ahead of. We con­sid­er it insuf­fi­cient­ly devel­oped but com­pared with the rest of Europe and the major democ­ra­cies, we are in fact one of the most advanced coun­tries in this respect. What­ev­er the major themes – and for my part I’m obvi­ous­ly more famil­iar with those relat­ing to health – this dia­logue between the world of experts on the one hand, and that of politi­cians and cit­i­zens on the oth­er, is part of our democ­ra­cies. It’s a pre­cious asset that we must preserve.

The CCNE has pub­lished its report on the end of life. Why did you decide to tack­le this sub­ject yourself?

It was a ques­tion of social debate: should the law on the end of life in France be mod­i­fied, or not? The CCNE’s opin­ion sheds impor­tant light on the upcom­ing polit­i­cal deci­sion. On this sub­ject, it’s not so much the sci­en­tist as the doc­tor speak­ing: it’s a sub­ject that touch­es on the inti­mate, on human­i­ty, and on which no one is real­ly right or wrong, because it’s a mat­ter for the cit­i­zen and soci­ety as a whole. I believe it’s vital to lis­ten to what our fel­low cit­i­zens think about such a com­plex sub­ject, which con­fronts us all.

This is not a cri­sis sit­u­a­tion, but one of ten­sion between two major eth­i­cal prin­ci­ples: indi­vid­ual free­dom and sol­i­dar­i­ty. Does our death belong to us indi­vid­u­al­ly, or to soci­ety as a whole? Today, this ques­tion of death has been entrust­ed to the med­ical pro­fes­sion, since around 80% of deaths occur in a med­ical envi­ron­ment. This was not the case 50 years ago in France, where death occurred at home much more often…

Don’t you ever want to have a greater say in the final decision?

You know, as I’ve said before, every­one must know their place: cit­i­zens express them­selves and must be lis­tened to, experts enlight­en, and politi­cians decide. The experts should not play at pol­i­tics. Of course, sci­en­tists know how to use cer­tain tech­niques or mol­e­cules to enable every­one to reach the end of life, not in a more dig­ni­fied way, but in a less painful one. This tech­ni­cal pos­si­bil­i­ty comes up against soci­etal obsta­cles that must be analysed and considered.

Experts should not play at politics.

In this con­text, the role of sci­en­tists is to shed as neu­tral a light as pos­si­ble by pro­vid­ing pre­cise infor­ma­tion about pal­lia­tive care in France, the use of deep and con­tin­u­ous seda­tion, or the med­ical sit­u­a­tions in which patients might wish to receive assis­tance in dying. Polit­i­cal deci­sion-mak­ers will then decide. Opin­ions on this sub­ject will always be diverse, and they will have to learn to live togeth­er, as cer­tain ten­sions will nev­er com­plete­ly disappear.

Is this an eth­i­cal chal­lenge for doctors?

It’s a very dif­fi­cult ques­tion for them, yes. Some pal­lia­tive care doc­tors say that their job is not to help peo­ple die, but to help them live. How­ev­er, I take a more nuanced view on this sub­ject. I believe that ill­ness belongs to patients, not to doc­tors, and that our role is to accom­pa­ny them, by lis­ten­ing to their wish­es and needs.

Interview by Jean Zeid

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