Valérie Depadt of Université Paris 13 - USPC, and Emmanuel Hirsch, President of POLÉTHIS - Université Paris-Saclay, return, in The Conversation, to the complexity of the decision-making process concerning the discontinuation of care for people with cerebral palsy in a "non-responsive state of wakefulness".
Termination of treatment pronounces five times
Since September 29, 2008, the day of the road accident that left Mr. Vincent Lambert in a neurovegetative state deemed irreversible by his doctors, termination of treatment has been pronounced five times. All these developments highlight the complexity of the decision-making process concerning people with cerebral palsy in an "unresponsive wakefulness state".
Since 2013, Vincent Lambert's family members have been engaged in a bitter legal battle over the discontinuation of care. On the one hand, Mr. Vincent Lambert's wife (as well as his sister and one of his nephews), who has also been his legal guardian since 2016, is asking for her husband to be sedated and his diet and hydration to be stopped. According to her, before his accident he had "clearly" indicated that he did not want any therapeutic obstinacy. On the other hand, Mr. Vincent Lambert's parents, who are opposed to passive euthanasia, are asking for him to be kept alive and transferred to a specialized institution.
Legally speaking, the situation is complex, since Mr. Vincent Lambert is not at the end of his life, that he has not clearly expressed with certainty his wish to discontinue care, and is no longer in a position to do so. This context actually raises two very distinct questions: on the one hand, the living conditions of Mr. Vincent Lambert as a person with a brain disability, and on the other hand, the discontinuation of his care, i.e., nutrition and hydration for a person who is not at the end of his life.
An inadequate environment of care?
The judicial and media focus on the decision to discontinue care seems to have overshadowed the essential issue of monitoring Mr Vincent Lambert's current living conditions. The law of 4 March 2002 on the rights of patients and the quality of the health system specifies that "the patient has the right to respect for his dignity" and that "professionals shall use all the means at their disposal to ensure a dignified life for everyone until death."
In May 2002, two months after the law was passed, a circular from the Ministry of Health prescribed the conditions for "creating care units dedicated to people in a chronic vegetative state or in a pauci-relational state". In particular, the concept of "long-term care" for people "with disabling chronic diseases with risk of life threatening functional failure, requiring constant medical monitoring and continuous technical care" is mentioned.
This law must apply unconditionally to all persons, regardless of their cognitive impairments and the extent of their disabilities. Mr. Vincent Lambert is not in intensive care nor at the end of his life: he should therefore benefit from the rights and care adapted to the comfort of a person with a disability.
However, being hospitalized at the Reims University Hospital, he does not benefit from the environment justified by his state of disability: absence of the adapted devices prescribed in the circular, contacts limited to the medical team and authorized relatives, closed room from which he is never taken out. This situation has been going on since 2013, the year in which the judicial procedure was initiated, which was supposed to lead quickly to a decision, which only came about six years later. From this point of view, it can be considered that the right to dignity, as defined both by Article L1110-2 of the Public Health Code and by the European Convention, is contested as regards Mr Vincent Lambert.
Issues linked to the discontinuation of care in the absence of advance directives
In its decision dated 24 April 2019 approving the discontinuation of treatment, the State Council drew on the law of 2 February 2016 "creating new rights for patients and people at the end of their lives".
However, Mr. Vincent Lambert is not at the end of his life. Consequently, and in the absence of advanced directives, a decision to discontinue treatment can only be taken on the basis of unreasonable obstinacy, pursuant to Article L 1110-5-1 of the Public Health Code. This defines unreasonable obstinacy as the situation in which processing operations intended to keep a person alive "appear unnecessary, disproportionate or have no other effect than the artificial maintenance of life".
However, for some experts consulted during the four successive collegial procedures, in particular those who submitted the November 22, 2018 report, the care provided to Mr. Vincent Lambert (which is now limited to diet and artificial hydration) does not constitute unreasonable obstinacy. They are only the ordinary accompaniment of a person in a state of altered consciousness. However, this same report confirms the patient's "chronic irreversible vegetative state".
Mr. Vincent Lambert's future therefore depends on the outcome of an expert battle over the unreasonableness of continuing to offer care to a person with a disability. What is then to be understood from these controversies, which will inevitably set a precedent?
First of all, the notion of "unreasonable obstinacy" as it exists in positive law gives rise to inadmissible mistakes in this area in a particularly sensitive context. Secondly, that the debate is not only legal, but also ethical: should it be noted that the consideration of a disability may constitute the major criterion for unreasonable obstinacy?
Lives "unworthy to live"?
In its report of May 5, 2014, the National Consultative Ethics Committee stated that
"The situation of a person who has been in a state of minimal consciousness or pauci-relational state for several years represents a particular and extreme situation of severe and stable disability, not involving a vital prognosis, which is also that of other persons with multiple disabilities and unable to express their will."
In France, several hundred people now live in a state known as "pauci-relational" or "chronic vegetative". From an ethical point of view, no authority has the authority to "think" as if it were obvious, that, totally dependent and hindered in their relational faculties, the persistence of their lives is a matter of "unreasonable obstinacy". Otherwise, it would be necessary to refrain from resuscitating any person who is considered a priori not to regain his or her autonomy, and to question the status and rights of people in the advanced phase of progressive neurological diseases with cognitive impact, such as Alzheimer's disease...
The case of Mr Vincent Lambert shows that the concepts of the end of life and unreasonable obstinacy should be clarified with regard to people with such disabilities, in order to protect us from interpretations that are detrimental to the sick person. In addition, it provides an opportunity to reflect on the situations inherent in the chronicity of certain diseases, the consequences of progressive diseases or severe disabilities that limit or abolish the person's cognitive faculties or even relational life. These human realities cannot be addressed solely through the lens of adjusting conditions to put an end to an existence considered unjustified. However, the question remains as delicate as it is to address a person who is not able to express his refusal of care or support....
Sometimes considered as a legal relentlessness resulting from intra-family controversies exacerbated by reckless public stances, particularly on the part of doctors, Vincent Lambert's very particular case raises questions more widely about the effectiveness of our solidarity and concern for patients in situations of extreme vulnerability. These are all essential questions that will feed into the debate on the eve of the revision of bioethics laws, expected this summer.
Valérie Depadt, Senior Lecturer in Law, Université Paris 13 - USPC, and Emmanuel Hirsch, Professor of Medical Ethics, Université Paris-Saclay