|| by Dr Nick Carr ||
Last month, Victorian Health Minister Mary-Anne Thomas pledged changes to relax the state’s voluntary assisted dying (VAD) legislation.
So, are these sensible improvements designed to improve access to a complex medical service, or are they the start of the ‘slippery slope’ so often quoted by opponents?
One proposed change is the removal of the so-called ‘gag clause’, which prevents health practitioners from raising the option of VAD with patients.
This is no great problem for the health-literate patient, fluent in English, who has read the VAD requirements and knows to ask.
But we also know that awareness of the VAD option remains relatively low among the general population.
It is no great leap to infer that among many migrant and CALD communities, that awareness is likely to be lower still.
Those with terminal illnesses face many complex decisions: Chemo or not? Surgery, radiotherapy, both or neither? Clinical trial of a yet untested treatment?
In some cases, these options may be brutal, speculative or both, but given an uncertain future and possibly unpleasant death, it is very hard for someone to say no, stop — a choice they might make if they know the option of a peaceful end under their own control is also available.
Consider the following example. Margaret,* a woman in her late 70s who had led a great life, was diagnosed with a nasty head and neck cancer.
Her oncologist advised that, with surgery, radiotherapy and chemotherapy, it was curable, but the recovery and long-term side-effects would be severe.
Margaret did her research, spoke to other survivors, and decided that, for her, the results of treatment were unacceptable.
Her team strongly urged treatment — after all, it would probably save her life — but she declined and came to me for VAD.
For her, this was absolutely the right choice. But Margaret was only able to make the choice because she knew to ask.
Had she not known, she would likely have endured a course of treatment and outcome that, for her, would have been misery.
Gagging doctors
The gag clause was inserted into VAD legislation to stop doctors from saying things like: “Let’s not bother treating you; you could just have VAD.”
I believe that this was always a false fear.
Health professionals want to treat people, they want to offer everything they can.
If anything, the pressure is to keep the patient alive, even if that’s not the patient’s wish.
That was certainly Margaret’s experience, as I found out when she described to me the almost hostile response from her oncology team when she declined treatment.
There is no other area of medicine where health professionals are barred from telling patients all their options.
Rather the contrary — it can be seen as negligent not to do so.
With VAD now legal in all states and the ACT, there are only two states — Victoria and South Australia — with a gag clause.
Let’s hope that it will soon be down to one.
More changes needed
Another proposal is that the requirement to be an Australian citizen be replaced with being ‘ordinarily resident’ or similar.
This matters because many people have lived here for years but have never taken formal citizenship, including large numbers of UK and New Zealand migrants.
My very first VAD case was a lovely man called Julian Bareuther. He saw me eight days after the VAD laws came into effect in June 2019.
He was certainly eligible — he had pancreatic cancer, a short prognosis, and met all the other criteria — until he showed me his passport.
British.
He had lived here for over 40 years, paid taxes, was eligible to vote and receive a pension, but was denied this one last need because he wasn’t an Australian citizen.
He suicided.
A horrible, lonely end.
It was hearing of this and other similar cases that has led the minister to recommend this sensible amendment to the law.
There are other changes I would like to see, but which are not part of this review.
One is the ban on using telehealth for VAD consultations.
This stems from a Commonwealth law, the Criminal Codes Act, which prohibits discussion of suicide by a carriage service (phone, text, internet, etc).
This law was never intended to apply to VAD, but has been interpreted as doing so.
Sadly, my attempt to challenge this in the Federal Court of Australia in 2023 failed.
Forcing sick, frail people to travel for every VAD interaction is cruel and unnecessary, and disproportionately affects those in regional and remote parts of the country.
Since COVID, clinicians have become very adept at using telehealth for sensitive consultations of all kinds — physical, mental and sexual health.
We also know when to tell a patient we need to see them in person.
The same parameters that apply to all other health matters should apply to VAD.
Other future changes I would like to see include expanding the eligibility to include people with dementia, and also those who are old and frail but without a terminal diagnosis.
In every discussion forum about VAD, dementia is the number one fear among older people, and there is strong demand for VAD to be an option for dementia.
This is a highly complex question, as evidenced by how rarely VAD is used for dementia in jurisdictions overseas where it is available.
Nevertheless, it is a crucial debate. I only hope it has become an option by the time I may need it.
A completed life
Finally, the notion of a completed life.
I have been consulted by many older people who have ‘done their time’.
They have had full and rewarding lives, but now the faculties are failing, and the days dominated by aches and pains and visits to the doctor.
Dr Rodney Syme, author of A Completed Life, used to talk about how we shouldn’t have to stay until the end of the last act, the final curtain.
It’s our show. We should have the choice to leave when we want to.
I strongly believe that VAD should be an option afforded to this group as well.
If that’s a slippery slope, sign me up for the ride.
Dr Nick Carr is a GP in St Kilda and a board member of Dying with Dignity Victoria.
* Not her real name.