Thursday, April 19, 2018

Study examines euthanasia of people with intellectual disabilities in the Netherlands

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Not Dead Yet spokesperson
An important study was published in the Journal BMC Medical Ethics (March 5) examining nine euthanasia deaths of people with intellectual disabilities in the Netherlands.

The purpose of the study was to examine:
How do physicians and the Dutch regional euthanasia review committees operationalise the EAS due care criteria for patients who have an intellectual disability and/or autism spectrum disorder? What, if any, are the particular difficulties when the EAS due care criteria are applied to these patient groups?
For more information about euthanasia from a disability perspective go to the disability rights group - Not Dead Yet.

According to the 2017 Annual euthanasia report, there were 6585 reported euthanasia deaths in the Netherlands in 2017. and of those, 252 of them were people who died by euthanasia for psychiatric reasons or for dementia.

The study acknowledges the growth in euthanasia for psychiatric reasons in the Netherlands:
There were 2 reported cases in 2010, 42 in 2013, and 60 in 2016. EAS for mental suffering has been fiercely debated. Arguments have focused on the difficulty of assessing the patient’s subjective perception and complaints and on the challenges in assessing the patient’s capacity of judgement, which may be impaired by psychiatric conditions such as severe depression.

The study examined 416 Netherlands euthanasia case summaries uncovering 9 cases of a person with an intellectual disability or autism spectrum. These cases are examined in the study. 

The nine euthanasia deaths included 6 woman and 3 men of varying ages. Of the 9 deaths by euthanasia, 6 of the people had intellectual disabilities, 2 were identified as Asperger’s syndrome and one was identified as autism spectrum disorder.

Three cases referred to family involvement, the other cases didn't include family information. One case stated that the person lived in a psychogeriatric unit while another case indicated that the person lived alone, while the other cases didn't refer to living conditions. Six cases referred to a previous admission to a psychiatric in-patient setting and there were several references to loneliness and social isolation.

The initial request was usually made to the GP. In six cases the GP refused, in three of the refusals, the GP did not support euthanasia and the other three cases the physician thought that the case was too complex or that the person did not qualify for euthanasia. In all of the six refusals, the person went to the "End of life Clinic" (euthanasia clinic) for approval.

Capacity assessments were referred to in eight cases, where five of the cases it stated that the person had decision making capacity. In three cases the physicians disagreed or wanted a second opinion concerning capacity.

The study concludes that safeguards and capacity assessment in cases of people with intellectual disabilities or autism do not effectively protect this group of people:
...Following the examination of the Dutch case reports, we conclude that the safeguards, in the form of legal due care criteria, are not easily applied to people with intellectual disabilities or autism spectrum disorder, and that the usual standards could in fact have the unintended effect of leaving vulnerable patients at risk. 
...From the literature and our examination of nine case reports published on the RTE website, we conclude that assessment of capacity can be extremely difficult people with intellectual disabilities, however mild. It requires a high level of expertise and an intimate knowledge of the patient. There are specialist intellectual disability physicians in the Netherlands, but there was evidence of involvement of such a specialist in only one of the cases (2016–03). 
...The Dutch cases raise the possibility that the bar for assessment of intractable suffering is set lower for people with an intellectual disability or autism spectrum disorder than for the general population, by considering their long term disability as a medical rather than a social condition. 
The study then suggests that the problems with euthanasia that were uncovered by examining deaths of people with intellectual disabilities may also apply to the general population:
Widening the implications even further, we speculate that many of the challenges highlighted in this paper could also be relevant to patients in the general population, and that they are simply more pronounced or extreme for vulnerable patient groups. It is quite possible that people with intellectual disabilities are like the canary in the coal mine, among the first to come up against issues that turn out to be issues for everyone. ...It may well be that the ability to use rationality and logic when weighing up the EAS option, and thus decision-making capacity in accordance with standard capacity tests, is impaired in most people affected by the emotional turmoil of terminal illness or suffering caused by chronic conditions.
The final comments from this study clearly uncover a reality, that being that all people who are considering death by lethal injection, at that moment, are part of a vulnerable patient group. The concept that euthanasia concerns free choice and autonomy represent a false and dangerous concept because the reality is that people only consider death by lethal injection when they are at the lowest point in their life. In other words, euthanasia is not about freedom, choice and autonomy but rather an abandonment of people at their time of need.

For more information 

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