Imagine you have an elderly family member with advanced dementia or Alzheimer’s, perhaps wandering off, perhaps unable to recognise their family and adjudged mentally incompetent in the eyes of the law. What could happen to them under David Seymour’s End of Life Choice Bill?

Newsroom is spending the next week analysing many of the 35,000 submissions to the Bill which would allow a person to end their life under medical supervision. We will look at some of the key themes emerging in the debate as the Justice Select Committee prepares to hold 25 hearings around the country.

One of the most vexed and troubling questions is how the law could apply, if it passes, to the growing number of New Zealanders suffering dementia or brain degeneration of which Alzheimer’s disease is the most common.

The End of Life Choice Bill before the Justice Select Committee currently precludes people with dementia. The bill sets out who can apply for a medically assisted death. You have to be suffering a terminal illness likely to kill within six months or a series of conditions like being in unbearable suffering or irreversible decline. But it does say that the person must have the ability to understand assisted dying and its consequences.

However, the question to some submitters is, should it exclude dementia sufferers?

The personal stories of ordinary New Zealanders dealing with dementia, through family members, caring for others, nurses, or having the condition, are among the most moving submissions to the Committee. But they disagree on what to do.

There is the registered nurse who looks after elderly bed-bound patients, some incontinent, who can hardly speak. She wonders if, given a chance, they would choose to spend their last days alive like this.

Or the woman whose daughter was diagnosed with early onset dementia at 49 but cherishes every moment as she feeds her entirely dependent child, but they still smile and talk in a fashion. She believes life should naturally run its course, no matter how hard.

Or the woman who says she watched her mother die a slow and undignified death and says simply, “All she wanted to do was to die but of course I could not help.”

Or the elderly doctor, whose wife died of dementia, who worries that talk of euthanasia adds to the fear of those suffering dementia as they feel helpless already, fretting that their family may be discussing their end.

Others worried about the growing numbers of dementia patients and whether they will feel pressured to consider assisted dying. One submitter called it a “tsunami” of dementia.

Alzheimers New Zealand, which represents the 62,000 people living with dementia, believes the number of people with dementia could triple by 2050.

“There remains the difficulty of hastening the death of a person who is not able to understand what they have requested when of sound mind.”

It says its members have a diversity of views on assisted dying so it can neither support nor oppose assisted dying. There has been no New Zealand research on the attitudes of people with dementia, or their caregivers.

But it is concerned about the Bill as it stands. Like a number of other submitters, it is worried there are not enough safeguards built in to the process and it argues some definitions are weak in the Bill. In fact, of all the 35,000 submissions it may pose the single best question on one of the definitions of a person eligible for assisted dying, someone suffering “irreversible decline in capability”. Who, after middle age, isn’t suffering an irreversible decline in capability, asks the organisation.

But probably its biggest issue is how a person with dementia could opt for assisted dying when they were mentally competent but how they could explain their wishes as time passes and they become less competent. How could the family or a doctor be sure someone hasn’t changed their mind?

Alzheimers NZ suggests that a person with dementia could discuss with a person with power of attorney, at what stage they may wish to die, or what they want to do, while still mentally competent. It could be for example that they cite when they are in ongoing pain.

“It is important that the decision that the person with dementia made when they were they were mentally competent is paramount, even when they are no longer mentally competent. A key issue is that time will pass between the original decision and the time that a person has reached the agreed stage. By this time, they may no longer be mentally competent. There is therefore a possibility that the person with the power of attorney and/or clinical staff could decide that this original decision is no longer valid. It is our belief that the views of the person with dementia are always paramount.”

Alzheimers NZ admits this is a very complex question. The person with dementia would have to think through the possibility that they might change their mind later, when they have less ability to communicate.

“It is important that the topic is discussed periodically with the person with dementia to ensure that they have not changed their mind.”

The End of Life Choice Society, whose president Maryan Street organised a petition last year calling for euthanasia, also says dementia is a difficult issue in assisted dying.

It points out that there exist already Advanced Directives where a patient can give their wishes on future medical treatment – for example not being resuscitated. So, the Society, which has 1400 members, says it should be possible to create an End of Life Directive for people with dementia to give their wishes while still mentally competent. A patient could say, for example, they wanted to die when they no longer recognised family and friends, or were totally physically dependent on others. 

But even then the Society is circumspect. “There remains the difficulty of hastening the death of a person who is not able to understand what they have requested when of sound mind. Some demented patients appear to be suffering, but others seem to enjoy the simplest things of physical life.”

Street, who organised a petition in 2016 calling on Parliament to investigate “medically assisted dying” for the terminally ill, says the End of Life Choice bill needs to take into account the wishes of people suffering dementia. 

She told Parliament’s Justice select committee which is considering the bill that it excludes sufferers by requiring them to understand the consequences at the time they request to die. 

Ms Street, president of the End of Life Choice Society, said the bill does not provide for release from dementia, “which is one of the most deeply held fears of many of our members”. 

She argued New Zealand should adopt legally binding End of Life directives which meant a person could set down their request for assisted dying while in sound mind, knowing it would be followed when they ceased to be mentally competent. 

“This is an additional hurdle for a doctor to jump, although many are quite clear that that is what they would like for themselves in such a circumstance.” 

Ms Street said one possibility is that End of Life directives could be enforced through the Family Court if families challenged them. 

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