Rhona's death-it was not what she would have wanted.
Rhona and I were married for 54 years and about 45 of those were good, until vascular dementia began to affect our relationship. She died in April 2014.
The current debate on end of life issues, sparked again by Lucretia Seales brave stand, has focussed on situations where the central figure has retained the mental ability to be part of any decision making. But what should be done where dementia has robbed that person of any capacity to take part? I offer our experience for consideration and my thoughts about what should change.
Rhona was diagnosed in 2005 with a prognosis that she might live for "2-12 years". She lived another eight years with six years in care and more than four of those in hospital. For perhaps three of the hospital years she was completely helpless and essentially unable to communicate. Her only voluntary movement was to open her mouth when I touched her lips with a spoon of food. No communication, not even eye contact but as far as I could tell no pain either or at least the hospital was controlling that. Eventually she ceased to eat and died a few days later.
We had both written living wills stating that we did not wish to be resuscitated if we suffered a drastic health incident so although dementia progresses apparently painlessly I was in no doubt that Rhona would prefer to be dead rather than lying helplessly in bed for years.
Obviously Rhona could not be part of any discussion about ending her life even if it were legal and at any one time there must be hundreds of people in New Zealand hospitals in similar situations. I believe that this particular situation must be part of the current debate and that it should lead to a law change allowing a life to be ended.
There is no recovery from dementia. It is all downhill, sometimes faster than others but the end is the same. To prolong life in this situation is, in my view, simply inhumane.
If the law permitted euthanasia in such cases how should it be framed to prevent any chance of abuse? I cannot offer any opinion other than my own that, whatever the law, the decision making process must involve one or more of the closest family members together with legal and medical expertise. It would be a very difficult process but this is a challenge that must be faced. Having lived through this ordeal with Rhona I would have opted to end her life several years earlier and I would have regarded this as my final act of love for her knowing that I was carrying out her wishes.
An absolute ban on such decisions is, in my view, an abdication of responsibility.
There must be a way to allow such decisions to be made with adequate safeguards.
Last year, as this public debate began, I attended two anti-euthanasia meetings and spoke strongly along the lines of the above. I was heard politely but gained the impression that I was a minority of one! Whatever, I presented an alternative and authentic viewpoint based on my experience.
I have also made a written submission to the select committee and, if public hearings and held, I will ask to present at one of those.