Opinion
What would it take for me to participate in voluntary assisted dying?
After decades of providing palliative care, Dr Horst Herb would be willing to be involved with legal voluntary assisted dying – as long as he knew the patient well. He reflects on that realisation following news that more Australians are seeking euthanasia overseas.
In palliative care, time and again, I have met people who just get sick of sitting in God’s waiting room. Some of their suffering has been alleviated, but they have very little pleasure in life. They would like to shorten that inevitable wait.
But you also meet others who would prefer to squeeze every possible second out of their lifespan, no matter what cost or suffering.
What does that mean? It means that palliative care and voluntary assisted dying – which will become legal in Victoria in June – will be complementary.
As palliative care providers, it is our duty to accept a patient’s wishes and act accordingly. For doctors who are comfortable with voluntary assisted dying, it will be the same.
In your own hands
Last September, the issue of assisted dying became personal for me for the first time.
One of my best friends – and mentor – was dying of metastatic prostate cancer. He was in his 90s and endured the cancer up until a certain degree. Then he just wished it would stop.
He was in a situation where there was nothing medicine could offer him, other than dulling his suffering with opioids, which he was not very fond of. An engineer and a very rational person, he ultimately took matters in his own hand.
He chose the time of his death, and did it in the company of people he wanted to be with him. It was a very dignifying experience for the whole family. There was time to say goodbye, and for his death to occur without extra suffering, as he’d been deteriorating steadily for six months.
Without the euthanasia drug, he would have had four to six weeks of increasingly severe suffering. His spine had been broken in multiple places from the metastatic disease and he was immobilised.
So instead of having an agonising wait, where his family might not have been able to be present at the time of dying, as they were in Germany and he was in South Africa, everyone could be there at his deathbed, including his grandchildren.
Choosing that point in time was a wonderful experience for everyone in the family.
Now, he did this himself. He would have preferred a doctor friend to do it, but it is illegal to do that in South Africa, and he didn’t want to impose such a risk on those who have to live on.
The whole experience confirmed for me what I’d always been thinking about assisted dying. This was the first time, though, that it was close and very personal.
The most personal of choices
For 17 years, I was the only GP in Dorrigo, a semi-isolated rural community inland from Coffs Harbour in NSW. For many years before me, there was an older doctor here who had a strong focus on palliative care. When she retired, I took on her load. That was how I learned the ropes.
Many patients had been with the retired GP for decades. That made it easier, in a way, because they could already talk openly about their preferences regarding death and dying. But for me to fully understand them and their family context also took time.
It’s very different providing palliative care to someone you’ve known for 10 years compared to a recent patient. My long-term patients knew me and my stance of respecting people’s decisions without trying to impose my own views. I would like to think they could talk more openly about what they really wanted.
What I have taken from these conversations is that I do not think it is the government’s right to decide our choices in these matters. Why should the law be involved, other than ensuring the choice people make really is their choice and is not foisted on them by disease or others’ financial motivation?
Victoria’s legislation is, in my view, the first step in the right direction. Legislation like this has to be refined over time, to ensure we strike the right balance, of course. But under the Victorian legislation, no doctor has any obligation to provide assisted dying.
That is very important. The patient can choose – and the doctor can, too. If the doctor has strong convictions against voluntary assisted dying, they can stay out of it and hand over to a colleague.
For me, though, I would be very happy to be involved if it was legalised in NSW – but only if it was with patients where I was confident I understood where they were coming from.
I would not offer my assistance to a patient with whom I was unfamiliar, because it would be hard to understand if it was just a spur-of-the-moment decision or even if there were hidden issues, such as beneficiaries from the death influencing the choice.
I would need to be very sure this is something about which the patient has thought long and hard, and that this is part of their personality and fits with what the patient would usually decide. That is impossible to do if you don’t know a patient well enough. You need to know if it’s out of character or not.
Dr Herb would not offer assisted-dying assistance to a patient with whom he was unfamiliar, ‘because it would be hard to understand if it was just a spur-of-the-moment decision or even if there were hidden issues’.
In the lead up to legalisation, I hope Victoria’s decision on voluntary assisted dying will lead to a focus on improved palliative care, which has always been neglected – particularly in rural and remote areas.
I will always remember a patient of mine who lived well outside Dorrigo. A young mother of five, she was dying of a hepatoma.
Her husband was providing for the kids as best he could, but the family was not well off and there was no money spare, particularly for petrol into town. I was the only one providing healthcare and palliation, but I was doing it essentially unpaid, as Medicare doesn’t provide for services like this.
When I hear people saying that palliative care is a substitute for assisted dying, I remember my patient’s passing. In many places outside the major cities, palliative care simply can’t happen. There is no funding, no staff, no facilities. In many rural and remote areas, palliation vanishes into thin air. That’s a fact.
So yes, well-funded palliative care can substitute for assisted dying in many cases. The key words there are ‘well-funded’ and ‘many’, but not all.
Who can choose?
As voluntary assisted dying becomes accepted, I think we will see new debate around its parameters. Dementia will be the big issue, particularly regarding consent.
At present, people with dementia will not be eligible to access voluntary assisted dying in Victoria. Personally, I do not think there should be a blanket ban on assisted dying for patients with dementia.
What defines a human being is his or her capacity to think and to interact with others. In the late stages of dementia, you won’t recognise your children or partner, and you won’t be able to relate to others. Consent is the issue, of course. I would argue this should be a choice for a patient’s closest relatives to make, as long as it is in line with a patient’s advanced care directive.
As a doctor, if I notice someone’s intellectual capacity is fading, I try to find out as much as possible about what they would like for the end of their lives, before it’s too late. If I was diagnosed with dementia, that would be a prime reason to seek euthanasia.
For me, it’s the most terrible scenario, when you can no longer make your own decisions and you are unable to act. I could not see any meaning in continuing a life like that.
In the aftermath of my mentor’s death, I’ve been thinking a great deal about assisted dying and palliative care, and reflecting on my own practice. What has often surprised me is that people can radically change their views when they have a terminal disease.
I have experienced this time and again. I had a patient who was a very strong supporter of assisted dying and went to lots of meetings about it. But, when it was crunch time, this patient changed their mind and died without assistance. And I’ve had others who were the opposite, staunchly against assisted dying but who changed their minds in the process of dying, who didn’t want to drag it out any longer.
Dying was not what they thought it would be. And we are not talking about pain here – we are talking about the knowledge of the slow, steady decline. The inevitability. Understanding that, this time, you won’t get better.
Such a well-reasoned change of mind is very different from spur-of-the-moment decisions or out-of-character actions. Once again, being familiar with the patient is invaluable in assessing this, and who else but the regular GP would be in the best position for that? Specialists in palliative care are, by definition, rarely involved for long enough to know a patient that well.
Even after assisted dying is legalised, it will remain a minority of deaths.
One reason is inertia. Many people continue their lives with inertia, where not doing anything is less effort than actively choosing their fate, even if they had the conviction that euthanasia was preferable.
Choosing the right time and actually making that decision – and acting on it – is very difficult, and many people will still die a natural death for that reason alone. Others might take into account the feelings of their loved ones, say, if their partner is strongly opposed to it.
There are many different scenarios. We will be working this out for years to come.
euthanasia medical ethics palliative care voluntary assisted dying
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