End of life: rather than advance directives, let's talk about concerted directives

In accordance with article L. 1111-11 of the public health code, any adult person who so wishes can write advance directives relating to their end of life “in the event that they are one day unable to express their wishes”. These directives make it possible, for example, to specify “the conditions for the continuation, limitation, cessation or refusal of treatment or medical procedures”. They are in principle binding on the doctor, but the latter can nevertheless disregard them when they "appear manifestly inappropriate or not in accordance with the medical situation", as specified in the third paragraph of the article.

It is precisely this point that has been the subject of a priority question of constitutionality (QPC) filed by the lawyer for the family of a forty-year-old victim of a serious accident in May 2022. Crushed by the vehicle he was repairing, the man had suffered multiple fractures as well as cardiorespiratory arrest at the origin of a absence of oxygen to the brain for seven minutes. Plunged into a coma, the patient had been taken care of by the Valenciennes hospital. After a collegial procedure, the medical team had decided at the beginning of June to stop the treatments, judging that their only effect was to keep him artificially alive with survival conditions described as “catastrophic”.

However, the man had written a handwritten letter dated June 5, 2020 and addressed to his doctor specifying that in the event of prolonged coma deemed irreversible, he wished to be kept alive, even artificially. On this basis, the family had brought the case before the administrative court to have the cessation of treatment suspended. Her request was rejected, she then submitted a QPC contesting the conformity with the Constitution of the provisions of the third paragraph of Article L. 1111-11 of the Public Health Code, arguing in particular that the term "manifestly inappropriate" was imprecise.

In his decision n° 2022-1022 QPC of November 10, 2022, the Constitutional Council ruled: this paragraph is indeed in accordance with the Constitution.

Why such a decision ? What are the implications? Wouldn't it be better to speak, rather than “advance” directives, of “concerted” directives and of an ethical alliance in the decision-making process?

Ensuring the preservation of the dignity of people at the end of life

The law of February 2, 2016 creating new rights in favor of patients and people at the end of life recognizes in advance directives the value of an “opposable” position which the doctor must take into account.

Ordinance No. 2020-232 of March 11, 2020, however, mentions the case of circumstances where these directives prove to be manifestly inappropriate or not in accordance with the medical situation.

In its decision of November 10, 2022 (no. 2022-1022 QPC), the Constitutional Council specifies this reservation:

"Firstly, by allowing the doctor to set aside advance directives, the legislator considered that the latter could not be imposed in all circumstances, since they are written at a time when the person is not yet faced with the particular end-of-life situation in which she will no longer be able to express her will due to the seriousness of her condition. In doing so, it intended to guarantee the right of everyone to receive the most appropriate care for their condition and to ensure the preservation of the dignity of people at the end of life. »

Added to this are the details provided by the Code of Medical Ethics in its article R. 4127-8:

“Within the limits set by law and taking into account the acquired data of science, the doctor is free to prescribe which will be those he considers most appropriate in the circumstances. »

It is obvious that the approach of advance directives in a context of medical resuscitation which proves powerless to envisage a possible evolution of the state of health of a person totally dependent on technical support to survive, justifies careful collegial consultation the dignity and justification of the treatments when they appear futile.

This position revokes the "opposable" nature of advance directives as an absolute principle without contextualizing respect for them, taking into account the direct interest of the person and the missions assigned to resuscitation in the service of the interests of all patients who must to be able to benefit from it.

The medical team, in consultation with the trusted person and in dialogue with the family, must be recognized in their responsibility to decide according to sound scientific and ethical arguments.

A general statement

The ordinance of March 11, 2020 specifies that “advance directives express the will of the person relating to his end of life with regard to the conditions for the continuation, limitation, cessation or refusal of treatment or 'medical act'.

The Constitutional Council ruled on the compatibility of the law of February 2, 2016 with regard to "the safeguard of the dignity of the person" and of his freedom. His general remarks are not intended to provide a specific response to the situation of a person in intensive care in a hospital establishment in Valenciennes who had drawn up advance directives in favor of keeping him alive.

He concludes his decision with a position that confirms the ability of the medical team to assess the ethical and medical admissibility of an advance directive:

"The words "when the advance directives appear manifestly inappropriate or not in accordance with the medical situation" appearing in the third paragraph of Article L. 1111-11 of the Public Health Code, in the wording resulting from Ordinance No. 2020 -232 of March 11, 2020 relating to the system of decisions taken in matters of health, care or social or medico-social support with regard to adults who are the subject of a legal protection measure, are consistent with the Constitution. »

This news relating to the dilemmas experienced by a family concerned about loyalty to their loved one, who can no longer benefit from a resuscitation strategy assimilated to unreasonable obstinacy, highlights the importance of recognizing in the process of collegial decision an authority. Indeed, the responsibility for such a decision based on indisputable arguments of the relevance of the medical approach cannot be attributed to the family.

Its arbitration supported by convincing scientific elements, within the framework of a fair and transparent consultation with the relatives, must allow an approach that respects the best interests of the person, but also the framework and the conditions of exercise of the resuscitation. . The criteria of justice in the access and continuation of resuscitation must also be taken into account as important benchmarks in the examination of situations which no longer make it possible to envisage a therapeutic project, committing to taking into account the principles of medical ethics and health democracy.

An ethical alliance between the person and his doctor in the decision-making process

On November 11, on France Info, I distinguished the circumstances mentioned about the person in intensive care in an establishment in Valenciennes, from that of Mr. Vincent Lambert. When the decision was made to apply a deep and continuous sedation protocol to him until his death in Reims on July 11, 2019, he was not in a medical intensive care unit and justified the environment enjoyed by the near 1800 people in a situation known as an “altered state of consciousness”.

Mr. Vincent Lambert had not drafted advance directives and yet, following medico-legal controversies between April 2013 and July 2019, the courts legitimized the decision of the medicalized end-of-life protocol, the intention of which was that he does not survive it.

This means that the Citizens' Convention on the end of life, which begins its work on December 8, 2022, should be careful to consider that "new rights in favor of the sick and people at the end of life" will never succeed in bringing the appropriate response to the unique and complex human realities of end-of-life decision-making, whether anticipated or not. They run the even greater risk of judicializing the practices of care where the relationship of trust and genuine consultation must allow everyone to consciously assume the fullness of their responsibilities and to adjust, sometimes in an admittedly unsatisfactory way, a position preoccupied with the dignity and sense of survival of the person at a given time.
For the family of this man in intensive care and the professionals at his side, what does the compulsory persistence of the medicalized maintenance of his physiological functions mean, with no other justification than compliance with a document which would force them to continue treatments that can be consider "inhuman or degrading", therefore contrary to human rights and the values ​​and spirit of care?

It is not certain that the "opposable" nature of advance directives (drafted according to estimates by 8 to 17% of French people) should not now encourage a more careful approach to what the alliance should be, between the person and his doctor, in the decision-making process in order to arrive at an informed, assumed and morally tenable choice.

The expression of our social concern, including the acknowledgment of a well-argued medical decision that does not comply with a decision that the person could no longer reconsider due to the irreversible alteration of their conscience, testifies to the concern for to avoid the unworthy extension, without justification and without the slightest objective of improving medicalized survival.

Rather than advance directives, let's talk about concerted directives and an ethical alliance in the decision-making process.

It is not a question of opposing the patient's preferences to the expertise of a medical team, of opposing the "right of the patient" to the "power of the doctor", but of allowing their consultation to favor a dignified and responsible approach to circumstances that engage the values ​​of our democratic life and the ethics of caring practices.

For further :

● E. Hirsch, "Vincent Lambert, an exemplary death", Editions du Cerf;
● E. Hirsch, “Ethics for times of crisis”, Editions du Cerf.

Emmanuel Hirsch, Professor of medical ethics, Paris-Saclay University

This article is republished from The Conversation under Creative Commons license. Read theoriginal article.