Dementia and assisted dying
on 09-Feb-2018

Dementia and “assisted dying”

I have recently been writing a submission for the End of Life Choice Bill promoted by David Seymour. This is the third such bill to go before Parliament – Michael Laws’ Death with Dignity and Maryan Street’s End of Life Options Bill precede it.

In 2015, after nearly 9000 people petitioned Parliament proposing the End of Life Options Bill, a Health Committee was established to investigate the issue. Maryan Street reported to the Committee that, from her discussions with many groups around the country, the main reason people supported assisted dying was a desire for autonomy. “Having considered themselves autonomous, self-determining adults throughout life, supporters believe that they should continue to be autonomous, self-determining adults at the end.”  Supporters were also fearful of dementia and wished to die “before they become a different person in the eyes of their loved ones, or become violent, unpredictable or a danger to themselves because of dementia.”

As we know, dementia is probably the commonest reason for loss of autonomy in older people, at least. Is the fear of dementia justified? Clearly the message that you can live well with dementia has not registered with the public, or at any rate, has not been believed.

Unlike Maryan Street’s Bill, the current proposal does not appear to include the option for an advance directive so, in fact, most people who have dementia or have lost autonomy are ineligible for “assisted dying”.  Advance directives present a myriad of practical and ethical problems but would be the only way someone with dementia might be able to choose “assisted dying”.

The great concern to me though, is that so many people would prefer death to dementia. Can we care for people in such a way that their lives are enjoyable for as long as possible? Can we reduce the stigma and social isolation that make it so hard for people with dementia and their supporters to live well? How do we challenge the view that people with dementia are violent and unpredictable? Can we support people so that the risk they present to themselves is minimised?

I remain undecided about the ethics of “assisted dying” in competent people. However reading people’s reasons to support the deliberate ending of life made me sad. People are still unable to rely on us, their community, to support them adequately should they develop dementia and lose autonomy. We still have a lot of work to do.

To make a submission to the End of Life Choice Bill: https://www.parliament.nz/en/pb/sc/make-a-submission/document/52SCJU_SCF_BILL_74307/end-of-life-choice-bill.  Submissions close on 20th February 2018.