Posted on 2016/02/17 at 7h05
Opinions of Philosopher
In November 2015 several psychiatrists, ethicists, lawyers and health professionals in Belgium gave voice to their profound concern: there is something fundamentally wrong with euthanasia in Belgium on the basis of purely psychological suffering. Two Belgian women, Sophie and Lotte Nys, just recently revealed the story of the death of Tine, their sister. On April 27 2010, Tine received euthanasia on the basis of " unbearable psychological suffering " because of "an incurable disease". Six years after the facts her family is still haunted by the experience and left behind with questions. Sophie and Lotte testified about this in a news programme of the Belgian - Flemish national television, Terzake (February 2) .
Tine Nys formulated her euthanasia request 4 months before her death. The fatal disease from which she suffered, autism, was diagnosed two months after the request. Fifteen years earlier Tine had been in psychiatric treatment for some time, and even attempted suicide. She clearly had gone through a very difficult period in her life. Yet, later on, she succeeded to build a regular life. She had a nice job, friends and family, all kinds of plans. 8 months before she died, however, she fell in a deep crisis after a relational break up and was haunted again by the wish to die: she went looking for a psychiatrist to help to end her life.
The treatment path that preceded Tine's euthanasia is very problematic. The psychiatrist who considered Tine's death wish to be reasonable had no prior therapeutic relation with her. The diagnosis of autism that Tine received was new: never before had she been diagnosed as such. Not only the family was surprised. The diagnosis of autism merits more attention. For the last 15 years, the concept of 'autism spectrum disorders ' has gained ground: even people with specific relational difficulties get that diagnosis quite easily. For sure, certain forms of autism are incurable, but they are not necessarily a source of unbearable suffering for which no other treatment than death is possible. No doubt Tine's distress and suffering was real. But should she not have received, even after her first euthanasia request, an offer for a full course of treatment? Did her situation not require an intensive process of consultation between specialists?
In the case of Tine, there is no trace of a genuine, carefully designed consultative process between specialists, who took their time to listen to Tine. Tine never received a well-thought out care path in an appropriate medical context. Rather, she went shopping for 3 signatures that she received one by one. One of the physicians, the GP of the family, was initially even opposed to the granting of euthanasia. The third physician, who performed the euthanasia, had no psychiatric expertise, but 'likes to do it' (so the family was told afterwards by their GP).
The way Tine finally died, is hard to imagine. To speak about a dignified death here would be utterly cynical. Up till today the family tries to cope with the fatal logic that unfolded once Tine had received the verdict of an incurable 'disease' that caused 'unbearable suffering' for which only death could offer a treatment. It should be stressed that it is the subjective empathy of the psychiatrist with the death wish (what some like to call in Belgium 'de invoelbaarheid' of the death wish) that forms the final ground on which an effective euthanasia is based. Following the verdict of the psychiatrist, Tine found a physician who wanted to perform the final life-ending act: a so-called Leif-arts, who is supposed to have had a proper training to cope with euthanasia requests and to offer euthanasia in a 'technically' appropriate way.
Initially, Tine made it known that she didn't want to bother anybody with her euthanasia. But shortly before her death, the family gathered in her small apartment. The loneliness had become at this very last moment apparently unbearable for Tine. A few hours before her death, she even called her sister Sophie, completely distraught and in great fear. When finally the family came together, Tine appeared to be in an intoxicated calm mood. Perhaps she had already taken medication on her own initiative. In any case, on her final day, Tine had no social worker, physician or therapist on her side. The Leif-physician showed up shortly before she died. The family did not know this physician. Tine was urged to write down at the table a last confirmation of her wish to die, a few minutes before the lethal injection was given. The physician had forgotten to bring tape with him to keep the needle in place: so Tine's father, who had always opposed the euthanasia request of his daughter, was asked to give assistance. The physician made remarks that exemplified a cold insensibility. He asked the parents to listen through the stethoscope to verify whether Tine's heart had stopped beating. Afterwards, he left the family with their deceased sister and daughter: he had to do another euthanasia that evening.
After the death of Tine, the family wanted to understand what happened: they felt disturbed and traumatised. All sorts of questions haunted them. Was Tine indeed incurably ill? Why did she receive a diagnosis that seemed to back up the legitimacy of her death wish, though she never had been diagnosed with autism before? Should they accept that the physician behaved as he did? The family wanted to be heard by the 'College of Physicians ', with the support of a trusted physician: but the psychiatrist herself declared that the College could not provide access to the file because the patient had opposed this before dying.
The family went to court: there is no verdict yet. The family also found out that after two months no official report of the euthanasia procedure had reached the Federal Control and Evaluation Commission, despite the fact that the law requires that this declaration be submitted within 4 days after the procedure.
The family of Tine Nys is not the only one in Belgium that remains traumatized after the euthanasia of a loved one on the basis of psychological distress or 'tired of life'. Yet criticism of the practice of euthanasia is usually dismissed in an abrasive way. Critics are scorned openly for allegedly ignoring the death wish of patients who want to die: they are made suspicious for remaining insensitive to the unbearable suffering of these patients and for ignoring their right to self-determination. Family members who complain or ask for an explanation are sometimes called dysfunctional, or dismissed as having mental health issues themselves. Some grudgingly acknowledge that 'technically speaking', not everything may always be optimal. But this is considered just collateral damage.
This defensive attitude ignores the crux of the matter. Apparently the euthanasia law, based on "self-determination" and "compassion" with unbearable suffering, has stimulated a practice of euthanasia, the implications of which are not always recognised in real life. The Belgian law can be interpreted in such an open-ended way that dying on request for merely mental suffering becomes possible, without real course of treatment and intensive care consultation between doctors. An end-of-life culture has emerged, where all too often a strong procedural ethics displaces the ground principles of due medical care. The fact that in many cases there is good care prior to an euthanasia, does not automatically make the law a good one: a good law should in the first place allow to detect cases where such care remains absent and if necessary allow for criminal sanctioning. The tragic death of Tine Nys raises not only the question whether the requirements of the euthanasia law have been fully met: it also makes it clear there is a radical gap between "we have applied the best care," and "we have acted according to the law." Did the legislature in 2002 intend, consciously or not, to make this gap invisible through the decriminalization of euthanasia? We owe the Belgian civil society an answer to this nagging question.
Willem Lemmens (Professor of Ethics and Modern Philosophy, University of Antwerp)
Ariane Bazan (Professor of Clinical Psychology, Université Libre de Bruxelles, ULB)
Gertrudis Van de Vijver (Full Professor of Philosophy, University of Ghent)
The authors speak in their personal name, not in name of their institutions