Wednesday, 12 August 2015

Patients with psychiatric disorders who request euthanasia

I'll freely admit that the paper by Lieve Thienpont and colleagues [1] (open-access available here) made me feel rather uncomfortable. With the objective of identifying "patterns in euthanasia requests and practices relating to psychiatric patients", authors detailed the experiences of 100 Belgian patients requesting euthanasia - 'the act of deliberately ending a person's life to relieve suffering' - through a retrospective case note review. Euthanasia is legal in Belgium under certain circumstances. Within their cohort, a fifth of cases were diagnosed (or eventually diagnosed) as being on the autism spectrum; the vast majority with Asperger syndrome (n=19).

Their results suggested that: "Depression and personality disorders are the most common diagnoses in psychiatric patients requesting euthanasia." Further, that Asperger syndrome represented "a neglected disease burden" when it came to the idea that "unbearable psychological suffering" might lie behind such requests.

I don't want to get into any debates about the rights or wrongs of euthanaisa in this post. Viewpoints are varied on this point and I'm not seeking conflict. The suggestion that 'psychological suffering' might rank up alongside 'physical suffering' when it comes to entertaining the idea of euthanasia is an important issue raised in this paper. One only needs to look at the very stark connection between psychatric disorder and suicide [2] to see that psychological suffering often takes a severe toll on a person. Indeed, when following up their cohort, Thienpont et al note that "43 of the 100 patients had died." The majority had eventually opted for and been granted euthanasia but: "Six patients had committed suicide."

The inclusion of a diagnosis of Asperger syndrome in the cohort followed by Thienpont et al represents something of an additional dimension to this issue and raises a number of ethical issues requiring much further discussion. Whilst it is already known that autism/Asperger syndrome seems to elevate the risk for issues such as depression, particularly bipolar disorder, appearing comorbid (see here) and that suicide ideation and contemplation might also not be uncommon in cases (see here), the question of what can be done to mitigate such issues must come to the forefront.

Appreciating that views are varied on autism and what it means to people - those diagnosed and those family, friends and professionals around them - and that individuals have a right to determine their own path, I would perhaps suggest that the Thienpont paper adds to a growing body of literature suggesting that the alleviation of symptoms must rank as a research priority for those who wish it and where effective (research-based) interventions can be isolated. Going back to the paper by Copeland and colleagues [3] (discussed in a previous post) suggesting that the reduction of 'childhood psychiatric distress' might have important knock-on effects for adult outcomes, one gets a flavour for where efforts might be initially directed. That also the idea that additional psychopathology accompanying autism might also be positively affected in those cases of 'optimal outcome' as per the findings from Orinstein et al [4] adds to the potential research agenda (see here for some recent discussions on this topic).

I know the idea of modifying the presentation of autism is not palatable for everyone, and that society also needs to play a role in how people with autism / autistic people are welcomed and supported. When however a label such as autism potentially leads, or is contributory, to a path whereby a person considers ending their own life by suicide or euthanasia, I find it difficult to say that we should just stand back and watch from the sidelines.

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[1] Thienpont L. et al. Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ Open. 2015 Jul 27;5(7):e007454.

[2] Wasserman D. et al. The European Psychiatric Association (EPA) guidance on suicide treatment and prevention. Neuropsychopharmacol Hung. 2012 Jun;14(2):113-36.

[3] Copeland WE. et al. Adult Functional Outcomes of Common Childhood Psychiatric Problems: A Prospective, Longitudinal Study. JAMA Psychiatry. 2015. July 15.

[4] Orinstein A. et al. Psychiatric Symptoms in Youth with a History of Autism and Optimal Outcome. J Autism Dev Disord. 2015 Jul 9.

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ResearchBlogging.org Thienpont L, Verhofstadt M, Van Loon T, Distelmans W, Audenaert K, & De Deyn PP (2015). Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ open, 5 (7) PMID: 26216150