To avoid a fate worse than death, change assisted-dying law

The upcoming review of the End of Life Choice Act is an opportunity to reconsider advance directives for dementia, Dr Mac Gardner writes.

It is now more than a year since assisted dying became legal, and the End of Life Choice Act has allowed physician-assisted dying according to certain criteria.

These criteria restrict this choice to those who (a) are of sound mind, and whose choice is therefore fully informed, and (b) have less than six months of predicted survival.

Thus, of the 214 people accessing the service up to September last year, the considerable majority suffered from advanced cancer, and a smaller number were diagnosed with the muscle-wasting condition, motor neuron disease.

One group who are, by these criteria, excluded from the choice of an assisted death are those in an advanced state of dementia, the commonest being Alzheimer’s disease.

But they cannot, on current criteria, make the cut. Obviously enough, a demented person would not, at the time, "be competent to make an informed decision about dying" — and survival can extend unpredictably well beyond six months.

Back in 2012, in an earlier iteration of Parliament gearing itself up for a debate apropos, Maryan Street drew attention to public demand, saying "The thing I clearly had in my mind, and from what I’ve been told time and time again, is that prominent fear of Alzheimer’s, people’s fear of ending their days with a lack of dignity, and not even knowing. So I had to put it in [the planned legislation]".

But her Bill died aborning; and when David Seymour reignited the question some years on, whether or not he might have preferred to include dementia as a grounds, he needed to compromise in order to bring others in Parliament on side.

The difference with respect to dementia is the need for an advance directive, to be written when the person is of sound mind — and this is not allowed under the current law.

We can look to jurisdictions overseas for precedents where people can write an advance directive in the specific case of a subsequent dementia.

It was most recently proposed in Quebec and Canadians are broadly in favour.

In a recent survey for The Globe and Mail (Toronto’s morning paper), "80% of respondents agreed, or somewhat agreed, that Canadians should be able to make advance requests outlining their conditions for assisted death, for when they can no longer legally give consent".

New Zealanders might be fairly similar in their views.

The broad principle is straightforward, and the End of Life Choice Society of New Zealand has free downloadable Advance Directives on their website.

How might our law respond to this? On the specific question of dementia, I have proposed that the following paragraph be inserted in the present legislation, allowing access to physician-assisted dying, for a person who "has made, while in full possession of the person’s mental faculties, and being above the age of 65 years, an advance directive that assisted dying should be administered in the event that the person would, in the future, have entered into an advanced state (stage five or above of the Alzheimer scale) of irreversible dementia, notwithstanding a mental inability at that time to revisit or to confirm the decision, and notwithstanding a likelihood that survival otherwise could extend beyond six months".

By stage five, memory loss is severe, agitation and confusion is common, and the person requires assistance with daily living; and they would no longer be competent to give informed consent.

Stage six is worse; stage seven is nearing a natural death.

The current Act was introduced to enable people who "experience unbearable suffering that cannot be relieved in a manner that the person considers tolerable" to cease their pain and end their lives. Quoting Shakespeare (who well understood humanity), "Though death be poor, it ends a mortal woe".

It is true that advanced dementia does not bring with it physical pain.

But we may here consider the anticipatory existential suffering that would be one’s fate — the thought that one might end up in a nursing home unaware of surroundings, not recognising family, doubly incontinent, daily dressed and undressed by a kind attendant, shunted unknowing from bed to chair and back to bed, and becoming little more than a human husk, the essential spark of humanity all but extinguished.

There’s a cliche that can describe this, at least as many would see it: a fate worse than death.

My proposal as above is, I understand, to be included among the material to be considered for when the Act comes up for review.

It will not go amiss if those who find themselves in agreement raise their voices in support.

— Mac Gardner is a retired medical geneticist.