Vincent Lambert: death by discrimination

Read Taylor’s thoughts on Vincent Lambert, the disabled French man who died after a decade-long family feud over his feeding tube.

Vincent Lambert: death by discrimination – July 16, 2019
Taylor Hyatt – Policy Analyst & Outreach Coordinator, Toujours Vivant-Not Dead Yet

 Vincent Lambert died last week.

For the past few weeks, all eyes have been on the French courts as they determined his fate. Mr. Lambert was severely injured in a car accident in 2008. Various news reports described him as “quadriplegic” with a brain injury, in a “vegetative state,” in a minimally conscious state, or used multiple terms to describe his condition. The phrase used most consistently throughout the media coverage, “right to die,” does not capture what the case was really about: disability rights.

After the accident, Mr. Lambert used a feeding tube, but could still breathe without assistance. He could not speak, nor did he appear to respond to questions or commands.  He had cycles of sleeping and waking, where he opened his eyes, moved his limbs and sometimes smiled or cried.  In 2011 he was evaluated by the Coma Science Group at the Liège University Hospital in Belgium, which determined that he was in a “minimally conscious, plus” state and recommended that attempts be made to find a way to communicate with him.  He subsequently received physiotherapy for one year, and 87 sessions with a speech/language therapist, which were deemed “unsuccessful.”  Evaluations done in 2014 and 2018 by a team of doctors affiliated with the hospital in Rehms where Mr. Lambert was treated described his condition as “vegetative,” a view that was still contested at the time of his death.

Mr. Lambert had no directive in place expressing what he wished to happen if he ever became incapacitated. A bitter family feud arose as a result. Mr. Lambert’s wife Rachel, and six of his eight siblings, maintained that he would not want to live with a severe cognitive disability. The two remaining siblings joined their devout Catholic parents, Pierre and Viviane Lambert, in fighting to continue the tube feeding. Since 2013, Mr. Lambert’s parents have appealed to various authorities on multiple occasions using different legal arguments, including the European Court of Human Rights (under Article 2 of its convention, the Right to Life) and the United Nations Committee on the Rights of Persons with Disabilities. Article 25 of the Convention on the Rights of Persons with Disabilities calls on states to “prevent discriminatory denial of…food and fluids on the basis of disability.”

The Court of Cassation – the highest applicable appeals court in France – finally ordered that his feeding tube be removed on July 2 of this year. Anyone familiar with Terri Schiavo’s story will see multiple parallels between the two cases, and the questions raised therein.

The campaign to withdraw food and fluids was prompted by Mr. Lambert’s supposed “resistance” to care he was receiving.  As Kevin Yuill pointed out, this points to an inconsistency in the position of those advocating the withdrawal of food and fluids; was Mr. Lambert capable of having and expressing an opinion about his care through his behaviour, and therefore possessing the right to refuse care? Or was he in a vegetative state, in which case his movements should be interpreted as reflexive and meaningless?

Another crucial issue raised by the Lambert case is the idea that disabled people must  meet a certain threshold of functioning, or potential for improvement, in order to justify their existence and to receive the necessities of life (food and fluids).  The view that death is preferable to severe disability led to a modification of France’s Public Health Code in February of 2016 to allow for the passive euthanasia of people like Mr. Lambert who were receiving “artificial life support” (tube feeding).  The law allows treatments that are “unnecessary” or “disproportionate” to be stopped; in Mr. Lambert’s case food and fluids were deemed to be “unnecessary” and “disproportionate” because he was unlikely to achieve a certain level of functioning.

As well, the record is unclear as to what kind of ongoing rehabilitative care Mr. Lambert received, aside from the physiotherapy and speech/language sessions recommended by the Coma Science group three years after his injury.  The team who evaluated Mr. Lambert in 2014 and 2018 noted that his condition had deteriorated; can that be linked to the kind of care he was (or was not) receiving?

Finally, the question of whether a feeding tube constitutes “artificial” life support was not sufficiently addressed.  Not Dead Yet raised this question in the California Supreme Court in the Wendland case in 2000; if a person receives nutrition through a tube taken by mouth, that is not medical treatment; why should that same tube be considered “medical treatment” because it goes into the person’s stomach?

If nothing else, courts should have given more weight to the fact that death is permanent. Mr. Lambert’s life changed drastically after the accident. Requiring the support of family and professionals does not make a person’s life “pointless” or “a waste of resources.” When Mr. Lambert’s wife no longer wished to care for him, calling for his death was not a humane response – especially when his parents were willing to take over. We only get one chance at life.

Another disabled person starved and dehydrated to death while the world watched. I take some solace in the fact that he was sedated when his feeding tube came out, though this does not make his fate right or less unnerving. May Vincent Lambert rest in peace.