Collateral damage from laws around euthanasia

Campaigners from Dignity In Dying protest outside the Royal Courts on 1 May 2018
Campaigners from Dignity In Dying protest outside the Royal Courts of Justice on 1 May 2018. Photograph: Rob Stothard/Getty Images

In response to the excellent article on what we can learn from the expanding practice of euthanasia in the Netherlands (Death on demand: Has euthanasia gone too far?, 18 January), we would like to add our assessment of the effects of assisted dying legislation on vulnerable patient groups. As experts in the fields of intellectual disability and palliative care, coming from both the Netherlands and the UK, we reviewed 16 case reports (published online by the Dutch Euthanasia Review Committee) of people with intellectual disabilities or autism spectrum disorders who have requested, and received, euthanasia.

Their “unbearable suffering” (a legal requirement) was regularly described not in terms of acquired somatic or psychiatric illness but in terms of the normal characteristics and variations of their lifelong condition or disability. This included people’s inability to adapt to new situations, maintaining social contacts or having meaningful relationships; a lack of effective coping strategies; and treatment refusal due to an inability to consider feasible alternatives to euthanasia.

Loneliness, feeling isolated and being unable to participate in society were all seen as valid causes of unbearable suffering. Euthanasia was agreed for these patients, because their physicians deemed them to be suffering unbearably “without prospect of improvement” (another legal requirement).

Euthanasia has become normalised in the Netherlands. Growing numbers of people are asking to die. But who can really assess that someone’s suffering is so bad that it is better to be dead than alive? And what are the “prospects of improvement” in a society where disabled people face stark inequalities in health and social care?

We are very concerned that the euthanasia requests of people with an intellectual disability or autism spectrum disorder are approved too readily, and that this puts vulnerable people at risk.
Prof Irene Tuffrey-Wijne Professor of intellectual disability and palliative care, Kingston University and St George’s, University of London, Sheila Hollins Emeritus professor of psychiatry of intellectual disability, St George’s, University of London, Prof Ilora Finlay Professor of palliative medicine, Cardiff University, Prof Leopold Curfs Professor of intellectual disability, Maastricht University, Netherlands

• With the Royal College of Physicians about to poll its members for their views on assisted dying, it is vital that media coverage of the issues is accurate and clear. Your article is unfortunately misleading. It conflates legal voluntary euthanasia deaths with suicide and also with deaths that have happened after palliative sedation. It then claims that “well over a quarter of all deaths in 2017 in the Netherlands were induced”. In fact in 2017 voluntary euthanasia in the Netherlands accounted for only 4.4% of deaths. Palliative sedation is a common medical practice with patients at the very end of life, both in countries that do and those that do not have some form of assisted dying law. Research has suggested there may be as many as 96,000 palliative sedation deaths each year in the UK, and the Association for Palliative Medicine, which represents doctors in the UK and Ireland, is explicit that there are circumstances where patients “require sedating medication to diminish awareness of their suffering”.

The article also characterises Dutch law as having been written for people with cancer and then having been changed to encompass other groups. In fact the law has not changed. From the start it allowed for people with incurable illness who are suffering unbearably to access voluntary euthanasia. In this country, Dignity in Dying does not follow the Dutch example. We are seeking a change in the law only for terminally ill adults who are mentally competent. Similar laws elsewhere provide comfort and reassurance to over 100 million people in the US, Australia, Canada and beyond.
Molly Meacher
Crossbench peer, House of Lords

• Christopher de Bellaigue argues that cases of euthanasia involve “different varieties of suffering”, by which he means to highlight the suffering of resistant relatives and doctors, traumatised by their inability to prevent a relative or patient from choosing death. He argues that this type of “collateral damage” is seldom acknowledged in the Dutch euthanasia debate.

But there is also “collateral damage” in witnessing bad “natural” deaths, particularly of those with dementia, and “collateral damage” in caring for a person who just wants to die. It is not just euthanasia that exposes our essential relatedness as humans, it is dying, and the caring entailed, in all its forms.
Dr Naomi Richards
Glasgow End of Life Studies Group, University of Glasgow

• I was so glad to read the article by Christopher de Bellaigue because I have been wanting to point out how unfair British practice is on this subject. If you are insensible and have been so for many years, judges are likely to grant you death. But if you are in agonising pain and conscious of it, you are “condemned” to live.

When put to a parliamentary vote, euthanasia is often denied “because old people might be pressured into it by self-interested relatives” – yet, of course, they feel no pressure from every report and prediction that emphasises that we are an expensively ageing society!

I support the idea of a “completed life pill” to be issued on demand by a pharmacy. I know my GP would hate to be thought of as doctor death.
Marion Bolton (age 84)
Hindon, Wiltshire

• In Christopher de Bellaigue’s fair and well-argued exploration of the ethical issues surrounding euthanasia in Holland, he does not clearly spell out the safeguards and preconditions for euthanasia which must be met. More than one doctor has to assess the extent of the suffering; whether the patient’s request was made freely and voluntarily, for example without pressure from greedy relatives; and the benefits of palliative care must be explained. The safeguards in Belgium are even tighter.

Here in Britain, according to Professor Emily Jackson, a third of all deaths are by morphine overdose, administered by doctors, which allows patients to die painlessly and with dignity; while the removal of life support by medical staff on the patient’s request is responsible for another third. Both of these life-terminating actions are premeditated and legal. And yet assisting someone to die at the Dignitas clinic in Switzerland could mean 14 years in prison (ie assisting someone to do something which is not a crime). Such inconsistencies discredit the law. It is time for Britain to catch up with some of our neighbours, with common sense and with public opinion.
David Simmonds
Woking, Surrey

• I am surprised and a little shocked by the suggestion that one’s relatives should have the power to veto one’s euthanasia. If you love someone whose life is excruciating and who wishes to end it, and assuming you are not a dependant (a child), in compassion shouldn’t you accept that wish?
Richard Stallman
Cambridge, Massachusetts, USA

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