I am very grateful to know voluntary assisted dying is being practised in NSW with such professionalism and humanity.
We all have stories about the failings of our current health system.
We can all think of patients who we have referred to some tertiary service only to have them receive substandard or inadequate care.
This is not such a story.
This is the story of my first encounter with a voluntary assisted dying service. It’s the story of my patient, Kate – the mother of a good friend of mine, who – as the wise, pragmatic and no-nonsense 84-year-old country woman she was – decided enough was enough.
And it’s the perfect example of how well a system can work when it’s designed well and adequately and appropriately staffed.
Kate should never have been my patient. For one thing she lived more than 450km from me in country NSW.
But in “a series of unfortunate events”, she had had to see specialists in Sydney and I became her “Sydney” GP.
Over a period of a couple of years – a couple of years that included a few orthopaedic operations and a couple of respiratory infections – she became increasingly short of breath and developed a chronic cough.
Long story short – Kate was diagnosed with progressive pulmonary fibrosis.
And it seemed the progression was pretty relentless. Initial, standard treatment didn’t help, and she was put on a trial mab but it gave her such dreadful diarrhoea she stopped it.
By the time she headed back to her own home in the country she had portable oxygen and had been given the prognosis of “terminal” and we (Sydney specialists, family and me) were all trying to engage local palliative care services.
This is not a criticism of this town or the local health district – it is simply the reality of rural medical services – there just aren’t enough people there.
In fact, there was one palliative care nurse to cover some enormous area, the local GP had a three-week wait list and didn’t do house calls.
The nearest palliative care physician worked out of a larger district hospital over one hour away – lovely man – who organised meds and put Kate in their system, but Kate couldn’t even hang clothes on the line, let alone attend medical appointments an hour away. It was never going to be enough.
It took less than a couple of months for even fiercely independent Kate to realise this wasn’t working. She put up the white flag and went to live and be cared for by her daughter (and son-in-law) on the central coast.
The referral to the new local palliative care service was emailed that day and included Kate’s very emphatic instruction that she wanted to investigate the VAD option.
Within two days of Kate arriving at her daughter’s place she was visited by the palliative care team, she was assessed, and daily nursing services were commenced. Within a week she had been contacted by the VAD team and been visited personally by a team member to explain the VAD process in detail.
Now she was living with her daughter she was far less anxious and panicky than she had been when living alone in the country, but she was adamant – this slow suffocation was no way to live.
The assessments occurred over a few weeks, all done at home. Both Kate and her daughter could not speak highly enough of all the health professionals that visited them over this time – especially those associated with the VAD service.
By all reports they were not only incredibly warm, empathetic and unhurried but they always made sure Kate knew she had all the power. They could determine she was eligible for VAD and even dispense the oral medication, but it was totally up to her when, how and even if she ever took it.
Kate’s overwhelming state of mind at this time was one of peace. The knowledge that she was not going to have to suffer more than she could bear, and that she could dictate if and when it was time to go was an absolute gift.
In the end, less than two months after first contacting VAD services, Kate was determined for VAD and chose the IV option. She died there, in her daughter’s house surrounded by her family. She just went to sleep and then stopped breathing. By anyone’s standards – it was a good death.
I’ve always been a supporter of VAD in principle but, to be honest, I have been less sure of how the process would work in the real world. I suppose shades of the debacle of medicinal cannabis prescribing spring to mind.
But I’ve got to say, this experience – albeit all second-hand – has been enlightening and, in a way, comforting.
All the appropriate checks and balances were done according to the strict criteria of the legislation but the process was timely, personal, respectful and seemingly devoid of needless and frustrating bureaucracy.
Here in NSW, legislation allowing VAD only went through in November 2023, the last state to approve it. In the first three months about160 people died this way, and over 500 had made a first request.
On a recent webinar hosted by my local PHN, it was estimated that, here in NSW, we can expect that 1.5% of all deaths will involve VAD.
To my mind, the benchmark for the NSW VAD process has been set very high. Hopefully there is sufficient manpower, enthusiasm and funding to maintain this high standard of care as demand grows. The signs are good.
In my extensive experience (of one), this whole system from the legislation, through the registration, to the delivery has been well thought through and implemented with wisdom and clarity of purpose. I know Kate was incredibly grateful to have had this option available to her. I can think of so many patients in the past who would’ve been similarly grateful had they had the opportunity.
For me too, I am very grateful to know such an emotionally fraught and potentially confronting area of medicine is being practised with such professionalism and humanity. We are lucky.
