Shaking things up (or healing isn't killing) - A globetrotting doctor's perspective on euthanasia

Article that a specialist doctor friend sent to Ariane Bilheran for posting on her website.

This doctor wished to remain anonymous, given the ongoing reprisals against the medical community.

One of the easiest ways to get rid of a human being without too much guilt is to consider that they are not one. Either that they are not yet, or that they are not, or no longer, fully human for whatever reason (and it's easy to find one to justify it). It is not surprising that at the very moment when we see the reappearance of a technologized version of the "superman" (transhumanism), we are individualizing human beings whose lives are not deemed worth living.

It was at a meeting of leprologists in the early 1970s that my naiveté as a young doctor was shattered by the discovery of a hidden program in a certain country aimed at eradicating leprosy through the elimination of lepers. At the time, it was a chronic disease considered virtually incurable, with inevitable physical deterioration. Lepers were everywhere subjected to widespread rejection, including in mainstream healthcare facilities, and, with few exceptions, could only receive any kind of care in leprosy clinics. In fact, no one in these clinics believed that these patients were unworthy of receiving treatment.

My subsequent training as a specialist in pediatric medicine took place in university hospital departments where we faced our own challenges in supporting dying patients and their families. By relieving pain and avoiding aggressive treatment, we knew that we were sometimes shortening their lives. It was our responsibility, but not our goal.

It is in the context of newborn care (obstetrics and neonatology) that we have once again been confronted with the question, "Is a life worth living?" I am not referring to aggressive treatment of children with serious injuries, but rather to situations where, faced with a non-lethal "anomaly" in the newborn, we have been asked to end the life in one way or another, the possibility of a child "with a defect" being unbearable in the eyes of some parents. Nowadays, we partly avoid the question, since human beings have no official existence before birth; what a strange form of prevention this elimination is.

It was later, in all sorts of facilities providing long-term care to children with disabilities, including those with severe multiple disabilities or degenerative diseases leading to death, that the question of ending their lives might have arisen. In reality, it never did during the thirty years I worked among people who taught me so much, even about the meaning of "small victories" and the value of eye contact or the hint of a smile. Except for one occasion: during a simple consultation, a single mother asked me to end the life of her very young child with Down syndrome and no associated medical conditions. After a difficult process, she agreed to placement in foster care and support for herself. She couldn't believe that this child could be cared for without mistreating him, when she herself had never reached that point.

Care requires a good dose of humility in the face of situations that do not allow for the brilliant therapeutic successes to which science has accustomed us for the past few decades.

"Créole" is a little girl who spent the first seven years of her life in hospital and social care facilities in the Paris region, diagnosed with autism and profound intellectual disability. At the end of this period, she was sent back to her native island because she had reached the age limit for continued stay at her current facility. She is like a wildcat who scratches and bites as soon as anyone approaches her. It is impossible to cuddle her, and no attempt at communication is effective. She wears a hospital gown that she drools on and receives artificial nutrition through a gastrostomy tube. She is not toilet trained. All the furniture in her room has been removed except for a mattress because of her agitation. The letter accompanying her contains no other life plan than maintaining the status quo. Despite this, after two years of patient and compassionate care with progressive goals shared by a team of professionals from various fields, as well as her family, Créole had become a little girl, dressed and groomed attractively, with a moderate intellectual disability and no particular behavioral problems. She ate at the table with other children and went home in the evening. She was even beginning to communicate with a few words. In her initial state, would her life have been considered worth living, to use the argument put forward in favor of euthanasia? Would her parents have been asked without hesitation to participate in the decision regarding her death? Who can decide that the life of a disabled person is not worth living? An administrative body? A judicial one?

To reach the other end of life, my mother-in-law passed away at home last year at the age of 104 after a slow decline in her mental, sensory, and physical health. No one in her family, nor any of the professionals, including the family doctor who still made house calls, considered her unworthy of their care. Existing laws allowed for the effective relief of her suffering, and being surrounded by her loved ones calmed her anxieties in a peaceful emotional environment. One of her daughters, who lived with her, was deeply affected by her death. What would have happened if she had opted for euthanasia? Who can say that the decision to euthanize will cause less emotional suffering for the patient's loved ones than providing support during their dying process? Should euthanasia be offered as a palliative to the current lack of appropriate care and support options? What would be the impact of such a decision on healthcare professionals whose vocation is to heal?

What level of trust would the most vulnerable patients (and others) have in doctors?

As for the prospect of assisted suicide for patients suffering from psychiatric illnesses, it fails to consider the variability and treatability of mood disorders, nor the evolution of "failed suicides", which does not always lead to relapse, far from it. It also fails to consider the denial of their illness and the denial of the possibility of help in these patients, a cardinal symptom of these pathologies. In an assisted suicide procedure, how can we truly give the person the chance to renounce their plan at the very last moment, in a final burst of life? It is true that we see many people on the streets suffering from severe psychotic disorders whom treatment has been abandoned. Their life expectancy is reduced, but it is not yet euthanasia; will we ever reach that point?

One by one, red lights begin to flash as the Hippocratic Oath is read in its original version, a version that French universities are forced to gradually erode to comply with new laws. Each time, care recedes a little further.

What would Antigone have said?