John Harman: End of Life Choice Act

Patient autonomy came late to the medical profession, but I’ve always championed it and relied upon it heavily when still working as a general and breast surgeon.

I saw the successful passage of Victoria’s Voluntary Assisted Dying (VAD) legislation as another step forward for patient autonomy, one that I hope New Zealand will soon follow.

I then learned of Dr Nick Carr, a trained voluntary assisted dying doctor. He has a regular GP practice in Melbourne’s inner-city suburb of St Kilda but makes himself available for VAD cases outside of his own practice also.

He finds “The main reasons that people have asked for the option of VAD have been to regain some control and choice; to not have to wait for a possibly unpleasant event to finally kill them; to not have to suffer the indignities of further losses of bodily function. For most, management of symptoms like pain and nausea has been well provided by palliative care services and these have not been the reasons for seeking VAD.”

Carr’s VAD involvement doesn’t seem to faze his regular patients; he sees families, kids and everyone he’s ever seen just as before. His GP practice hasn’t skipped a beat.

“No one has labelled me as Dr Death”, he says. “The same seems to have applied to other VAD providers”. This is reassuring for any Kiwi doctor who may be considering undergoing training to participate in assisted dying.

The Victorian legislation is described as “the most conservative in the world”. Carr says this has sometimes made it difficult to implement in practice and at times, it has resulted in perverse outcomes.

“There is an over-reliance on documentation. For example, a patient of mine was deemed ineligible as, despite living in Melbourne since 1961, he had never taken Australian residency. I had to tell him I couldn’t help him. Rather than wait for his pancreatic cancer to kill him in some uncertain and unpleasant way, he committed suicide – exactly the kind of outcome the law was designed to prevent.”

Our New Zealand legislation is only slightly less cumbersome; our doctors will also know the frustration of bureaucratic processes slowing down the race against time to relieve the patient.

As with our End of Life Choice Act, the Victorian legislation forbids doctors to tell patients of the option of VAD. “This is no problem for the informed, articulate English-speakers who know that they have to ask, but a significant barrier for the more marginalised.
How can my patients give informed consent if I cannot tell them all the choices?” asks Carr. “It’s like being told that I can tell someone with heart disease about pills, but not about stents or surgery.” Our doctors will have to bear with this.

On the rewarding side, Carr says “the consultations as a VAD provider have been surprisingly unemotional. All the complex stuff about a horrible diagnosis, treatment failure and imminent death have been done, so by the time they come to someone like me for VAD care, it’s about the practicalities and getting things sorted out. The overwhelming response has not been distress, but enormous relief that they are getting back some control over this final stage of their life.”

“There’s been no suggestion of coercion at any point – rather the opposite. Families have been more likely to be reluctant, but supportive.”

“After all the argument, hand-wringing and dire predictions, grannies are not being bumped off left, right and centre, nursing homes are not being emptied, nor are confused older people being coerced into signing on.

What has happened is that a small number of people have had the huge relief of being provided with an option previously denied them. An even smaller number have actually gone ahead and used the medication, and the experience has been overwhelmingly positive and peaceful. For everyone else, the vast majority of Victorians, nothing has changed”, ends Carr.

I believe it will be so for New Zealand also if Kiwis vote in favour of the Act coming into force at the referendum.

I set up St Mark’s Breast Centre in 1993 to provide the most comprehensive breast clinic in New Zealand. It was intended as a life-affirming initiative.

But there sometimes comes a time when even best practice no longer relieves the patient’s suffering and death is inevitable. The patient should then have a choice as to how that happens.

Mr John Harman, MB ChB 1976 Otago; FRACS 1984
Auckland. M: 021 955 197.

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