Having a possible escape to end life at your own timing offers reassurance and changes the perspective on current and prospective suffering

By Martijn Hagens.

In a recent blog, Ben Colburn discusses that ‘the option of assisted dying is good for you even if you don’t want to die. In the paper related to that blog, he argues that “if someone knows they have a (potentially) acceptable escape, it changes the character of the choice set as a whole, and hence changes the reasons on which someone might chose the other options they face”. Further on, he mentions the example of British journalist Melanie Reid and argues that “she now makes an active choice to live, in the knowledge that there is a way out if she needs it.”

Results from our recently published article are relevant to the argument to ‘legalise assisted dying by appealing to the autonomy of people who don’t want to die’. In our study, we included exactly those people who do not want to die, but are seeking assistance in suicide, or are actually seeking the ability to be able to self-determine the timing and manner of their own end of life.

In the Netherlands, several organisations offer non-punishable assistance in suicide outside the Dutch Termination of life and assisted suicide review procedures Act. While assistance in suicide is punishable under Article 294 of the Dutch Penal Code, several Supreme Court rulings resulted in jurisprudence stating that having conversations about the wish to end life, offering moral support and providing general information about ways to end life, are non-punishable assistance in suicide. These organisations in the Netherlands offer counselling that consists of these three aspects of non-punishable assistance in suicide.

Our first quantitative study shows that about one in four people seeking this kind of counselling had no disease, one in five had no suffering at the start of counselling, and – most relevant to Colburn’s argument – about one third of these counselees did not have a wish to end life. We explained this by distinguishing a group of counselees that sought counselling to be able to prevent possible prospective suffering. In our qualitative in-depth interview study, most counselees had obtained means to end their own life. Knowing how to obtain this medication brought them reassurance, which was expressed by giving peace of mind, a feeling of safety, reassurance to be able to decide for yourself and take your own responsibility (self-determination), and to be independent of health care professionals.

In line with the argument of Colburn that “to have a (potentially) acceptable escape, […] changes the character of the choice set as a whole, and hence changes the reasons on which someone might choose the other options they face”, counselees in our study say that this reassurance added to their quality of life because they experienced less uncertainty about the possibility of having to continue in a state of unwanted suffering, memory problems felt less threatening, a depression became easier to deal with and it offered energy to continue with life.

Finally, this same principle applies to the finding that only a minority of patients that are deemed eligible to receive assistance with dying from the Swiss right-to-die organisation Dignitas actually make use of this assistance. They seem to regard this possibility as an ‘emergency exit’ option for when the deterioration of their health may become unbearable. Interestingly, this also says something about the existence of this form of counselling outside the practice of the legalized assistance in dying by physicians in the Netherlands. The provision of medication to end your life by a physician is restricted under the Dutch Termination of life on request and assisted suicide review procedures Act. Physician assistance in dying cannot be guaranteed in advance for situations in which patients anticipate prospective suffering because it depends on whether the due care criteria are met in a situation of a current request for such assistance.

 

Title: Experiences with counselling to people who wish to be able to self-determine the timing and manner of one’s own end of life: a qualitative in-depth interview study

 Author(s): M. Hagens1, M.C. Snijdewind2,3, K. Evenblij1, B.D. Onwuteaka-Philipsen1, & H.R.W. Pasman1

Affiliations: 1. Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC–Location VUMC, Amsterdam, The Netherlands; 2. Department of Medical Humanities, Amsterdam Public Health Research Institute, Amsterdam UMC–Location AMC, Amsterdam, The Netherlands; 3. Department of Medical Ethics, Amsterdam Public Health Research Institute, Amsterdam UMC–Location VUMC, Amsterdam, The Netherlands

 Competing Interests: None

Social media account of post author:  www.researchgate.net/profile/Martijn_Hagens

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