What would it take for me to participate in voluntary assisted dying?

Horst Herb

25/02/2019 1:36:39 PM

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.

Dr Herb calls Victoria’s legislation is ‘a step in the right direction’, but believes it is important that no doctor has any obligation to provide assisted dying.
Dr Herb calls Victoria’s legislation is ‘a step in the right direction’, but believes it is important that no doctor has any obligation to provide assisted dying.

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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Alireza   25/02/2019 10:13:38 PM

What an absolute joy, reading this opinion piece. It was obviously coming from the heart!
As a GP who is involved in providing service to residents at aged care facilities, I could relate to the writer’s experiences very deeply.
Thank you for sharing your experience with us.

Peter Coleman   26/02/2019 8:08:10 AM

Dear Dr Herb, as we know cancer is a terrible disease and dying is hard but we all have to do it. I believe you killing prematurely your patient who became your friend with prostate cancer was misguided compassion and thank God we have a law that protects both doctors and patients from doing this. We have good medicine for physical symptoms in Australia. Existential distress does not respond well to medication but sitting with patients, silence , listening,laughing together does help so much. The time leading up to death is so important and it is worth preserving. I speak shame to the Victorian parliament for passing this evil law and I pray that it will be repealed as soon as possible. Also Dr Herb I am shocked that a doctor could ever do what you did to your patient/ friend. I say this to you in true compassion and forgiveness and love, Peter Coleman

Adele Stewart   26/02/2019 9:05:29 AM

Thankyou. I completely agree with everything you’ve written. So important that don’t doctors AND patients have choice.

Dr Annabel Kain   26/02/2019 9:32:30 AM

Peter Coleman, you have completely misread Dr Horst's article. He did not at any time state that he was involved in assisting his friend to die. See this paragraph "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." He was using this example to explain that having a close personal friend in this situation had added weight to his own thoughts about euthanasia, developed over many years of providing palliative care to long-term patients. He does not need a lecture on the value of sitting with patients to relieve their existential distress. Dr Horst, I commend you on a very well-thought out and heartfelt article, and hope that others take the time to read it carefully without immediately jumping to conclusions based on their own view of the world.

Dr Cho Oo Maung   26/02/2019 9:33:18 AM

Religion is important teaching of maintaining our good way of thinking and behaviour.
No God lead to death of misery. Merciful killing with cocktail Morphine and Midazolam do exist by palliative care team whether the law permit Euthanasia or not.
We doctor to alleviate the symptoms of suffering but not to kill because of the burden of family or nurses or health system cost. To kill is easy. To live is challenging. A good doctor chooses challenge. We follow the teaching of " Thy shall NOT kill ". We don't assist SUICIDE or MURDER in some way. With Respect ... Dr Cho

Dr Daniel Thomas Byrne   26/02/2019 9:39:26 AM

I am on the same page as Dr Herb. Long term relationships with patients and respecting choices are essential.

Katriona.herborn   26/02/2019 7:23:43 PM

What a beautiful article. As a G P in one area for 40 years I fully concur with the feelings and beliefs expressed by Dr Herb. How wonderful, if terminally ill, to be able to choose to die at a time of your own choosing, with your loved ones gathered around, and with the aid of your long known and trusted physician.. This, as a G P, would be as great a privilege as being present for the birth of a baby!

Bruce Watts   27/02/2019 7:36:01 AM

Appreciated Horst. It will be interesting to see if Victoria's legislation is any less problematic than NT where very few met criteria for being euthanased (3 in total I believe) partly because getting a psychiatrist to sign off that they were rational and not depressed in any way was very difficult. I am in that group who have held to the traditional view that euthanasia is morally wrong, but wonder if I may feel different if I were a patient in such a situation myself. Bruce Watts

Dr Andrew Paul Vidor   27/02/2019 3:36:33 PM

Thank you Horst. I found your article moving and perceptive. I believe that people with a terminal illness should have the right to die peacefully and without suffering at a time of their choice provided they are of sound mind. We can easily make the mistake of thinking that somehow assisted dying is some new and terrible idea, when in fact people who were suffering have been assisted to die throughout human history. This is an issue of care and compassion, human rights and individual choice and not a decision that should be forced on any one or any doctor by the state or the church or those who feel they have a right to dictate how we live or end our lives.

Dr Peter Robert Bradley   1/03/2019 10:11:13 PM

Great article, Horst, totally agree, and excellent comments on it by Katriona, Bruce and Andrew. To the naysayers, all one can say is, "there are none so blind, as those who will not see".
See, there is it again. An annoying request for another valid security code when I know I just entered exactly what was there. These robot/spam things are an absolute curse..!

Cart before the Horse   3/03/2019 10:26:07 PM

I would have hoped that potential medicines that could reduce suffering, such as medical cannabis, would have been legalised before euthanasia.

Dr Rodney Paul Jones   5/10/2019 10:07:06 AM

In my opinion that those who say they do not fear death , have not watched many people die