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04.- Fin de vie / End of life — CHURCH OF FRANCE / États généraux de la bioéthique — Which world do we want for tomorrow? The brave new world…

04.- Fin de vie / End of life — CHURCH OF FRANCE /  États généraux de la bioéthique — Which world do we want for tomorrow? The brave new world…
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Scientific and legal elements :

Since 1999, the leg­is­la­tor has devel­oped three axes: access to pal­lia­tive care, physi­cian-patient co-respon­si­bil­i­ty and pre­ven­tion of ther­a­peu­tic relentlessness.

Pal­lia­tive care is defined as “acute and con­tin­u­ing care pro­vid­ed by an inter­dis­ci­pli­nary team in an insti­tu­tion or at home. They aim to relieve pain, alle­vi­ate psy­cho­log­i­cal suf­fer­ing, safe­guard the dig­ni­ty of the sick per­son and sup­port those around him. The law of June 9, 1999 estab­lish­es a right of access to pal­lia­tive care to any per­son whose con­di­tion requires it. The law of 22 April 2005 (“Léonet­ti Law”) requires the com­pul­so­ry inclu­sion of a pal­lia­tive care chap­ter in mul­ti-year con­tracts con­clud­ed between health care insti­tu­tions and the pub­lic super­vi­so­ry author­i­ties. The law of 2 Feb­ru­ary 2016 (“Léonet­ti-Claeys Law”) includes edu­ca­tion on pal­lia­tive care in the “ini­tial and con­tin­u­ing train­ing” of health pro­fes­sion­als (arti­cle 1). The imple­men­ta­tion of access to pal­lia­tive care is sup­port­ed by mul­ti-year plans but remains insufficient[2], despite the rec­om­men­da­tions of the Nation­al Con­sul­ta­tive Ethics Com­mit­tee (cf. Opin­ion n°108).

The law of 4 March 2002 estab­lish­es a doc­tor-patient co-respon­si­bil­i­ty: “Every per­son, togeth­er with the health pro­fes­sion­al and tak­ing into account the infor­ma­tion and rec­om­men­da­tions he pro­vides, takes deci­sions con­cern­ing his health… No med­ical act or treat­ment can be per­formed with­out the free and informed con­sent of the per­son and this con­sent may be with­drawn at any time[3]. In case the patient is unable to express his will, the doc­tor, before any inter­ven­tion or inves­ti­ga­tion, must con­sult the “trust­ed per­son” des­ig­nat­ed in advance by the patient or fam­i­ly, or fail­ing that one of his relatives.

The Act of 22 April 2005 adds to this pro­vi­sion the pos­si­bil­i­ty for any adult to “draft advance direc­tives in the event that one day he is unable to express his will”. It rein­forces the role of the “trust­ed per­son”. It makes a “col­le­gial pro­ce­dure” com­pul­so­ry before the doc­tor decides to lim­it or stop treat­ment like­ly to endan­ger the life of a patient who is unable to express his will. Final­ly, it gives the patient the pos­si­bil­i­ty to refuse or inter­rupt any treat­ment. How­ev­er, the doc­tor must try to con­vince him to accept “essen­tial care”.

The law of 2 Feb­ru­ary 2016 (with its imple­ment­ing decrees of 5 August) accen­tu­ates the author­i­ty of the patient, by decid­ing that advance direc­tives are bind­ing on the doc­tor, except in cas­es of vital emer­gency or if the doc­tor, after a col­le­gial pro­ce­dure, con­sid­ers that they are “man­i­fest­ly inap­pro­pri­ate or not in con­for­mi­ty with the med­ical sit­u­a­tion” (arti­cle 8).

In order to avoid ther­a­peu­tic relent­less­ness, in line with the 2002 law, the 2005 law adds to the duty not to engage in “dis­pro­por­tion­ate care” the duty to avoid “unrea­son­able obstinacy[4]”. When suf­fer­ing becomes too heavy to bear “in the advanced and ter­mi­nal phase of a seri­ous and incur­able dis­ease”, the law even allows the physi­cian, if there is no oth­er way to relieve the suf­fer­ing, to imple­ment a sedation[5] which may have the sec­ondary effect of short­en­ing the patien­t’s life. The 2016 law autho­rizes under cer­tain con­di­tions “a deep and con­tin­u­ous seda­tion caus­ing an alter­ation of con­scious­ness main­tained until death”. It is then accom­pa­nied by anal­ge­sia, i.e. the treat­ment of pain.

 

Accord­ing to CCNE, the debate is once again open on the legal­iza­tion of assist­ed suicide.

Anthropological and Ethical Issues

The 2016 law was passed while the appli­ca­tion of the pre­vi­ous 2005 law was far from being gen­er­alised. More than mov­ing towards a new law, we must ensure the prop­er appli­ca­tion of the very recent law, first in the sense of devel­op­ing a true pal­lia­tive cul­ture. Pal­lia­tive care is an expres­sion of med­i­cine that respects patients at the end of life and con­sid­ers their dig­ni­ty as inalienable[6]. They are “essen­tial” to med­ical practice[7]. They involve reg­u­lar dia­logue between care­givers, patients and their fam­i­lies, as well as with­in the med­ical team itself. It is in such dia­logue that the appli­ca­tion of “advance direc­tives” can serve the patient. To encour­age the time need­ed for accom­pa­ni­ment and the sin­gu­lar col­lo­qui­um, the cur­rent fund­ing sys­tem that favours the activ­i­ties asked for should be reviewed[8].

The 2016 law, by explic­it­ly leg­is­lat­ing the excep­tion­al med­ical prac­tice of “deep and con­tin­u­ous seda­tion” until death, rein­forces the require­ment of good prac­tices in this field, to avoid any con­fu­sion between seda­tion accom­pa­ny­ing the end of life and seda­tion that delib­er­ate­ly caus­es death. All the more so when this seda­tion is accom­pa­nied by anal­gesic treat­ments as well as the ces­sa­tion of nutri­tion and diet. On this sub­ject, the Société Française d’Ac­com­pa­g­ne­ment et de Soins Pal­li­at­ifs has pub­lished ref­er­ence documents[9].

The debate on assist­ed sui­cide is there­fore reopened. Accord­ing to CCNE, this prac­tice con­sists “in giv­ing a per­son the means to kill him­self”. It mobilis­es the inter­ven­tion of oth­ers but “places the respon­si­bil­i­ty for the final act on the per­son who asks for it[10]”. This would be “phar­ma­co­log­i­cal-phar­ma­co­log­i­cal sui­cide assistance[11]”, since the pres­ence of the physi­cian is not required when the lethal sub­stance is vol­un­tar­i­ly absorbed.

The request for its legal­iza­tion is based first of all on the will to respect the auton­o­my of the patient. How­ev­er, auton­o­my can­not be an absolute val­ue that iso­lates the patient: “The human being, from the begin­ning of his exis­tence, is a’be­ing in rela­tion’. Auton­o­my is rela­tion­al. It is exer­cised freely in the con­fi­dent sur­ren­der of one­self to anoth­er who remains atten­tive to the inte­gral respect of one’s dig­ni­ty. Weak­ness makes even greater use of rela­tion­ship and trust. Par­tic­u­lar­ly painful ago­nies are then invoked. Yet “the dying per­son does not usu­al­ly ask to die. Uncon­scious, even if he com­plains, he does not suf­fer more often[13]. It is true that agony that lasts can become intol­er­a­ble for the fam­i­ly. But should the dying per­son­’s life be end­ed to relieve the loved ones?

Per­mit­ting “assist­ed sui­cide” would cre­ate “a delib­er­ate break in the social bond. It would be in con­tra­dic­tion with sui­cide pre­ven­tion efforts (see O.N.S.), and risks lock­ing those con­cerned in despair. It would involve the coop­er­a­tion of care­givers and phar­ma­cists in an act lead­ing to death, and implic­it recog­ni­tion of the patien­t’s loss of dig­ni­ty. How­ev­er, it is always advis­able to encour­age a “respon­si­ble prox­im­i­ty” which takes care of the per­son in his dig­ni­ty with­out short­en­ing his life and with­out fight­ing unnec­es­sar­i­ly against his death[15].

Feb­ru­ary 1, 2018


[1] Arti­cle L. 1110-10 du Code de la san­té publique (CSP).
[2] En octo­bre 2017, le « Plan nation­al 2015–2018 pour le développe­ment des soins pal­li­at­ifs et l’accompagnement en fin de vie » n’avait atteint que 50% de ses objectifs.
[3] CSP Art. L.1111–4.
[4] Cf. Jacques Ricot, Penser la fin de vie, EHESP, 2017, p. 135–145.
[5] Emploi de médica­ments qui provo­quent un état incon­scient. Une séda­tion bien con­duite n’abrège pas la vie.
[6] Voir Jacques Ricot, Penser la fin de vie, op. cit., p. 259–290.
[7] Con­seil de l’Europe, Réso­lu­tion 1649, 28 jan­vi­er 2009.
[8] Cf. Mme Agnès Buzyn, Min­istre des sol­i­dar­ités et de la san­té, à Rennes le 4 jan­vi­er 2018, a évo­qué une recherche pour établir un finance­ment à par­tir du « par­cours de soin » plutôt qu’à par­tir de « l’activité ».
[9] http://www.sfap.org/rubrique/les-recommandations-sur-la-sedation
[10] CCNE, Avis n°121, Fin de vie, autonomie de la per­son­ne, volon­té de mourir, 13 juin 2013, p. 41.
[11] CCNE, Avis n°121, p. 42.
[12] Mgr Pierre d’Ornellas et alii, Fin de vie, un enjeu de fra­ter­nité, Sal­va­tor, 2015, p. 87–100.
[13] A. KAHN, L’ultime lib­erté ?, Plon, 2008, p. 31–32. Voir aus­si Fin de vie, un enjeu…, op. cit., p. 108–117.
[14] Mgr Pierre d’Ornellas, audi­tion au Con­seil Économique, Social et Envi­ron­nemen­tal, Jeu­di 11 jan­vi­er 2018. Voir aus­si Catéchisme de l’Église Catholique, n. 2280–2283.
[15] Cf. Mes­sage du pape FRANÇOIS, 18 novem­bre 2017 : http://www.soissons.catholique.fr/wp-content/uploads/sites/13/2017/12/171122-LC-2017–40-01-Message-du-Pape-Francois-Fin-de-vie-nov.-2017.pdf

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