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Dementia and Advance Decisions

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Sue WilkinsonThe death in May 2014 of Sandra Bem, pioneering researcher on gender stereotyping, sent shockwaves through the feminist psychology community. The news that she took her own life at the age of 69, four years after receiving an Alzheimer's diagnosis attracted – variously - disbelief, distress, and admiration. A set of commentaries and reflections prompted by her death will be published in the academic journal, Feminism & Psychology, in early 2015.

According to obituaries, Sandra Bem had announced, on diagnosis with dementia, her intention to kill herself – while she still could without assistance –if and when the condition became too debilitating for a quality of life she would consider worthwhile. Her position resonates with many others - perhaps particularly younger women. Neuroscientist Lisa Genova, author of the powerful and moving novel, Still Alice (about the life of a Harvard psychology professor diagnosed with early-onset Alzheimer's at the age of 50), says in an interview at the end of the novel:

"I also felt it was important for Alice to consider suicide. I thought long and hard about the decision to include this. ... I didn't want to alienate any readers. But I found that everyone I knew diagnosed with Alzheimer's under the age of sixty-five had considered suicide. That's extraordinary. The average fifty-year-old doesn't think about killing himself (sic), but every fifty-year-old with Alzheimer's does. This is where this disease forces you to go. So I felt Alice had to go there as well."

Sandra Bem, 'Alice', and others like them consider suicide not because of deficiencies of care, but because they don't want to become unrecognisable to themselves. A dementia diagnosis has prompted others to seek assistance in ending their lives at the Dignitas clinic in Switzerland (Dyer, 2013). And in my research on the helpline run by the British charity, Compassion in Dying, helpline callers frequently reported that they would not want to live (as they often put it) as "a cabbage" or as "a vegetable": i.e. without awareness of themselves, their loved ones or their environment (Wilkinson, 2013). They worried that they would be kept alive for many years with advanced dementia, against their wishes. And by then it would be too late for suicide.

Dementia is clearly a feminist issue. It disproportionately affects women, who constitute around two thirds of those diagnosed with dementia (e.g. Alzheimer's Society, 2013); and who also constitute the majority of carers of those living with dementia (e.g. Alzheimer's Association, 2014). And figures from the Office of National Statistics, published in October 2014, reveal that, for the second consecutive year, dementia has been recorded as the leading cause of death for women - it now kills three times as many women as breast cancer, and thousands more than heart attacks or strokes (Gallagher 2014).

Most of these women will receive support and care from their families and/or health and social care professionals, and relatively few of the hundreds of thousands diagnosed will consider suicide. But, as feminists, we need to need to listen to these voices too – and to respect their decision that, for them, life is no longer worth living. We also need to consider alternatives to suicide for those who do not want to live with dementia, but who do not want – or are not able – actively to kill themselves.

One alternative can be simply to refuse medical treatment for other ailments. Older people with dementia frequently have a range of other medical conditions - particularly coronary artery disease, diabetes and congestive heart failure - and they are more likely to be hospitalized for treatment of these medical conditions than those without dementia (Alzheimer's Association, 2014). A great deal of life-prolonging treatment is routinely given to people with dementia. Refusing this treatment means that they may well die earlier – e.g. from a heart attack or a diabetic coma – and not with end-stage dementia.

Anyone can refuse life-prolonging treatment as long as they have the mental capacity to do so. You can ensure that you do not receive treatment after you lose capacity by making what used to be known as a "living will" – now called an Advance Decision (in England and Wales; Advance Directive elsewhere). An Advance Decision (AD) is a statement of your treatment wishes designed to apply when you are no longer able to say what you want - as in advanced dementia (and other conditions, such as severe brain injury, for example). Provided the AD is completed correctly (signed and witnessed), and applies to the situation you are in, it is legally-binding and your refusals of treatment cannot be overruled by anyone. You cannot, under current law (in most countries), request active assistance to die, but you can refuse treatments that would keep you alive for longer than you want.

It is not difficult to write an AD: you can download a template from the Alzheimer's Society website. It can be completed without a lawyer, given to those who care about/for you, and lodged with your GP as part of your medical records. You can make an AD at any time, as long as you are over 18 and have the mental capacity to do so. With an early dementia diagnosis, it would be wise to obtain a statement of capacity to make an AD and attach it to the AD itself.

Writing an AD refusing life-sustaining treatment may well achieve an earlier death than would be the case with end-stage dementia. Even without an additional medical condition (like a heart problem or diabetes), you could die from an untreated chest infection or pneumonia; and you would not be artificially fed once you were unable to swallow.

If, like Sandra Bem, someone chooses to kill themself after receiving a dementia diagnosis, they may need to do so relatively 'early' (while they still have capacity) – and, in so doing, may lose some years of life that might have been valued and worthwhile to them. Moreover, if they rely on someone else to help them end their life, that person risks a prison sentence for breaking the law, because assisting a suicide is illegal in England and Wales (and most other countries). By contrast, writing an AD refusing life-prolonging treatment allows them to live longer (and not implicate anyone else in their death).

And – if living without the mental capacity to make decisions about the things that matter most to them is a quality of life they do not consider worthwhile - they will have the peace of mind of knowing that, once they have lost that capacity, their life will not be medically prolonged against their wishes.

Of course, many – probably the majority – of those who receive a dementia diagnosis, will decide that life is still worth living, or simply go on living, and the priority for their families, carers and social/health care professionals, will, of course, be to provide the best possible care, treatment and support for the remainder of their lives. But the choices of those few who – like Sandra Bem – decide otherwise, and act on that decision, should not be denied or hidden from view. As feminists, we should honour and respect these more challenging choices too.

Sue Wilkinson, Professor of Feminist and Health Studies, Loughborough University,

Tags: advance decisions, rights Written 2014-11-12

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