When a former editor of The BMJ and respected health academic like Richard Smith even tentatively argues the case for medically assisted rational suicide (MARS) to avoid the slow and progressive personality annihilation that we call dementia, it can’t be dismissed as a fringe opinion. Dementia worries people more than cancer and that’s hardly surprising because while dying messily from cancer is distressing for families to watch and for patients to experience, the really awful stage usually lasts days or weeks rather than months. Of cancer patients who get the “green light” to go to Switzerland for MARS, fewer than 20% actually make the journey.  If palliative care proves adequate, they use it but they want to have the option for MARS if it doesn’t.
For patients and families facing dementia, the timescale is years (7.1 on average) and palliative care has virtually nothing to contribute. A large British survey showed that “[most] of the UK general public do not wish for life-sustaining treatments if they were to become demented and the majority agreed with various forms of euthanasia.”  When people with advanced dementia die, even if they might have lived for several more years, the predominant feeling in most families tends to be relief, at least in private.
I’ve done a few mental capacity reports for people with early dementia who went to Dignitas or LifeCircle because they were losing the one thing that defined them as an individual and didn’t want to remain alive when that loss reached the stage that Richard describes in his mother. Even if, like her, they might seem to be past caring, they didn’t want to put their families through the experience of having conversations that will never be continued at the next visit, let alone the stage of terrifying hallucinations or of no conversations at all.
Even more difficult than cases involving dementia are those involving intractable psychiatric conditions that have not responded to years or decades of appropriate treatment. They can cause patients and their families even more distress than the worst phases of cancer and for much longer. Most such patients who applied for MARS in Holland or Belgium had made several serious suicide attempts and to argue that extreme and intractable psychological distress merits less consideration than its physical counterpart is neither good logic nor good medicine. For me this is illustrated by a shocking and memorable documentary called “Mothers don’t jump off buildings.” It was about a mother who did exactly that after her repeated pleas for MARS had been rejected and the film was made by her daughter, Elena Lindemans, after she had tried for ten years to repress her very traumatic memories of the event and get on with her life.
A day or two before Richard’s blog, Lord Rix begged his fellow peers to legalise MARS. He was once a comic actor and later chairman of learning disabilities charity Mencap, in which capacity he regularly campaigned and voted against legalisation. Now that he finds himself facing intolerable distress, he has changed his mind. Once it is accepted that it is for patients, rather than their doctors, to decide what constitutes intolerability, it is surely inconsistent to put an upper time limit on that distress. The official policy of both Dignity in Dying and Health Professionals for Assisted Dying concerning people whose intolerable distress is not expected to be ended “naturally” by their deaths within six months is not far from telling them that they can metaphorically or literally go and jump in a lake. Apart from dementias, quite a few patients with motor neurone disease, stroke and other intractable and/or progressive conditions don’t want to face years of intolerable quality of life.
Nevertheless, I shall be surprised if Westminster permits MARS in the next decade, though support for reform from a former Archbishop of Canterbury, Lord Carey during the last debate was welcome. Physicist Stephen Hawking is another prominent citizen who now thinks that “To keep someone alive against their wishes is the ultimate indignity.” Hawking, who has Motor Neurone Disease, gave reasons were very similar to those given by Richard, who does not want to be “so dependent on others… to consume resources for no obvious reason” and believes that “meaningful life must give some purpose beyond simply being alive.”
Meanwhile, British palliative care physicians really should try to visit and observe their counterparts in Belgium. That country already had first-rate palliative care when its specialists were brave and humane enough to concede that even the best palliative care doesn’t always work and that some kinds of suffering simply cannot be palliated. They were the doctors who were most active in getting the law changed in that overwhelmingly Catholic country. In contrast, hardly any British palliative care specialists have put their heads above the parapet. Palliative care clinicians used to whisper in my ear at conferences that things would change when hospice pioneer Dame Cicely Saunders died and they would feel more able to speak their minds. Someone still seems to be making them too frightened to do so.
Colin Brewer was a psychiatrist and a committee member of the Voluntary Euthanasia Society (now Dignity in Dying) from 1978 to the early 1990s. He is currently the Associate Coordinator of My Death, My Decision (MDMD) formerly the Society for Old Age Rational Suicide (SOARS).
1] Luley S, Minelli L, Martino S. Dying with Dignitas: an ‘emergency exit’. In: (C Brewer and M Irwin Eds) I’ll See Myself Out, Thank You. 2015. Skyscraper, Newbold on Stour, 64
2] Williams N, Dunford C, Knowles A, Warner J. Public attitudes to life-sustaining treatments and euthanasia in dementia. Int. J Geriatr Psychiatry. 2007 Dec; 22(12):1229-34.