Spending years with dementia is the biggest fear of many people, says Waikanae journalist David Barber. Last week he appeared before the health select committee
inquiry into assisted dying at Parliament to talk about his wife, Frances, who suffered from early onset Alzheimer’s. This is his submission:
I thank the committee for the opportunity to make a personal submission on voluntary euthanasia which I believe to be one of the most critical issues facing society today.
I wish to speak on only one aspect - the need for provision of an end-of-life directive to be included in legislation allowing physician-assisted dying.
Why do I feel so strongly on this issue? My wife was diagnosed with early onset Alzheimer's disease at the age of 48.
Two years later, I had to make arrangements for her to attend a day care centre so that I could continue working.
As her condition deteriorated I could no longer care for her and at the age of 52 she was admitted to a secure unit at Porirua Hospital.
She died aged 55 after falling and breaking a hip. She never recovered from the resulting replacement surgery.
We had been married 33 years, had three children and happily survived the stresses and strains of moving a family to and from five countries dictated by my work.
She was a strong, capable, independent and proud woman and her rapid decline with its consequent loss of dignity distressed her, me and our children enormously.
Her advanced Alzheimer's meant she was incontinent, unable to feed and dress herself, or recognise friends and family.
A pioneering female journalist and a feminist before the word became fashionable, she could no longer write, read, or take part in the social intercourse that made her a popular friend to hundreds of people we met around the world.
She spent her days in Porirua endlessly walking the confined corridors of the secure unit - it was a prison of necessity because while Alzheimer's patients pose no threat to society, they wander and have to be locked up for their own safety.
That was her "unbearable suffering" - a phrase you are hearing much about.
I knew Frances well and I know that she did not want to live in that condition and would have welcomed the ability to choose an end to her suffering had she retained her mental faculties.
She could have lived in misery for another 30 years or so - an unbearable prospect for anyone - and her early demise was a blessing for her and us all.
Frances Barber interviewing a penguin when she worked as a reporter for Wellington's Evening Post.
I submit that an End-of-Life Directive requesting a physician's help to end suffering if a person developed severe dementia should be included in far-sighted legislation.
It will, of course, have to be signed and witnessed before the onset of dementia with all the safeguards one expects to be included in the new law permitting physician-assisted dying.
I have signed an Advance Directive for Health Care declaring that if I develop Alzheimer's, a terminal illness or severe degenerative disease, cannot recognise my family and am mentally incompetent to accept or decline life sustaining treatment I should not be resuscitated, placed on life support or fed by conventional or artificial means.
When the law is changed, I would want these provisions superseded by a request for a physician to end my life so that I could die peacefully in the company of friends and family rather than have to resort to a lonely suicide to end my suffering.
Spending years with dementia is the biggest fear of many people - it is feared more than cancer, for example - and I suggest that anyone who has experienced the horror of watching a loved one suffer the ravages of that most terrible of diseases would prefer a merciful release.
I believe a law change is inevitable because the majority of people want it - 66 per cent are in favour, according to a survey published in the New Zealand Medical Journal last month.
I want to stress that people like me are talking only of "voluntary" euthanasia for those who want the choice to end unbearable suffering.
I hope that stories like mine will help convince the committee to recommend a compassionate new law that upholds the human right to die, as well as to live, as we wish.
I would like to finish with an anecdote about a young American soldier caught in a hail of machine gun fire as his unit landed on a Normandy beach on D-Day in 1944.
The bullets tore through his chest, shot off an arm and blew away most of his face. His pain was unimaginable; his fate obvious. He begged his mates to end his suffering with a bullet. Is there anyone in this room who would have denied him?
