'Happy' in a diving bell

Or "How to diss research for ideological reasons"

Michelle Wheatley in hospital

Yesterday I was interviewed by Edward, a local sixth-former, about my views on euthanasia and terminal illness. It so happened that the morning news had carried an item about research based in Belgium and France about Locked-In Syndrome, that terrible condition often caused by a massive stroke. I wrote about one sufferer in I Choose Everything, young mother of two, Michelle Wheatley, who lived in Offerton, next to Hazel Grove, where we lived for three years. She was in Stepping Hill Hospital for a year, and is now in a nursing home. On her website LIS is explained with clinical detachment: "Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others through coded messages by blinking or moving their eyes, which are often not affected by the paralysis."Michelle Wheatley's website She is utterly dependent on others for everything. She has just last month convinced Stockport NHS Chief to let her try an intensive course of rehab physiotherapy - but it was a struggle. 


I suppose the most famous example of it was Jean-Dominique Bauby, editor of Elle and author of The Diving Bell and the Butterfly. The other sufferer who's hit the headlines is Tony Nicklinson, who wants the legal right to assisted suicide. He's been like it for 20 years, and understandably tired of the whole thing. He once said to me that while I had a death sentence, he didn't even have that. He was interviewed on the 'Today' Programme about the British Medical Journal Open article on the research. The research was carried out among members of the LIS association of France. It was not commissioned (i.e. by an interested party), and, as all good academic research, it was submitted to external review. If you read the article, you will find it very objective and statistically sound. Its astonishing conclusion was that the majority of the 65 respondents (72%) described themselves as "happy" while the minority (28%) counted themselves "unhappy". They were asked about end of life issues. While 12 of the 16 (75%) "unhappy" had envisaged euthanasia, only 19 (44%)  of the "happy" had ever thought of it, and of the whole sample, both happy and unhappy, only 8% often had suicidal thoughts. In other words, the over-all attitude of people with LIS is much more positive than from the outside we would have imagined.


So how do you dismiss research like that? Well, as far as I could tell, Tony Nicklinson's main criticism was that it was carried out in France, "which is a Catholic country" where they must fear eternal damnation if they commit suicide. I have a feeling that France became a secular state after the Revolution. But even in the research project the proportion who described themselves as religious (which of course covers a multitude of sins!) was a remarkably high 70%. (I wonder why in that group, by the way. Churchgoing isn't 70% in France, from what I've seen.) More remarkably the proportion among the "unhappy"was 81%. In other words "religion" was hardly an escape. As the article puts it: "The happy and unhappy groups did not differ regarding socio-demographic, physical and functional variables including religion, living at home or with a partner, income, education, physical care and feeling comfortable in the company of others. Depression, suicidal ideas, consideration or wish for euthanasia and the wish not to be resuscitated in case of cardiac arrest were significantly more frequent in the unhappy group." I suspect Dignity in Dying (formerly the Voluntary Euthanasia Society), or whoever briefed Mr Nicklinson, conveniently forgot those sentences.


The conclusion the researchers drew was: "Our data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic (anxiety relieving) therapy. Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed." BMJ Open article Locked-In Syndrome


My friend, Louise, who works with a charity for the elderly commented: "Yes: three news items in a very interesting juxtaposition today. One was the thousands of days spent needlessly in hospital by the elderly because of lack of care available outside; the second was the proposal by the regional NHS Chief that patients be given the choice as how they could die, and the third was that even the most severely disabled people would not want to choose to die because most of them were happy." And she asked the disturbing question, "If they were in hospital, would they feel obliged to choose how they should die?"


It's easy to make assumptions that people like Michelle Wheatley are exceptions to the rule. In fact now we know they're not.