Voluntary assisted dying - Andrew Denton on what it means to die well

By APNA nurse content producer Matthew St Ledger and media personality Andrew Denton

Source: APNA Primary Times Winter 2022 (Volume 22, Issue 1)


As Australian states and territories adopt new legislation allowing voluntary assisted dying (VAD), it’s important that nurses understand the new laws and their implications for nursing practice. APNA’s nurse content producer Matthew St Ledger caught up with broadcaster and media personality Andrew Denton to discuss patient-centred care at the end of life. 

For many health-care professionals, the planning and provision of end-of-life care is part of their job; however, death can be a difficult topic to discuss with patients and the conversation can be complicated by moral and ethical dilemmas.  

For several years, Andrew Denton has been one of Australia’s strongest advocates for VAD legislation, and in 2016 he co-founded Go Gentle Australia, a charity that aims to help relieve the distress, helplessness and suffering experienced by Australians with untreatable or terminal illnesses, as well as that of their families and carers. He had some good advice for nurses trying to navigate this difficult and complex issue. 

Matthew St Ledger: What does it mean to die well? 

Andrew Denton: One of the most senior palliative care nurses in Victoria, Professor Margaret O’Connor, says: ‘A good death is the death the person wants.’ I think that’s a good way of looking at it and I would extend that by saying, ‘You want to die as close to being the person you are as you’ve lived.’  

MSL: What is the Australian public’s understanding of voluntary assisted dying (VAD) and how does this compare to the way health-care professionals understand the issue? 

AD: People will often respond to the topic of VAD with, ‘We treat our dogs better than we treat people.’ VAD is broadly understood as not letting people suffer unnecessarily at the end of life. It’s as simple as that. People generally understand that the law’s about avoiding this suffering if the patient is beyond meaningful medical help. Why would you let them suffer when we have the means to help them?  

When it comes to the medical profession, I have been surprised to discover some things. This applies more to doctors than nurses: I had just assumed that death came with the territory, that doctors were conversant with this, but many aren’t. Many are deeply confronted by it. I think it’s different for nurses. It’s still confronting, but nurses are often right there on the frontline. They are sometimes literally holding people’s hands at the end. That’s not often a doctor’s experience.  

The main reason these laws have taken so long to pass in Australia is, most particularly, the Catholic Church, who are a very powerful unelected institution in Australia. They’ve run a very skilful disinformation campaign and fear campaign; and their most powerful regiments in those campaigns have been medical professionals who share their views. What I’ve discovered is that many doctors who oppose these laws actually have no idea how they work. They know nothing about how they work overseas, but they’re not interested in that inquiry. 

MSL: Is this opposition to VAD part of a larger problem, that is, the powerful role that Catholic and church-led organisations play in health-care organisations in Australia? 

AD: Absolutely! It’s an ongoing problem. The VAD conversation is about is who’s got the keys to the medicine cabinet. Those who oppose these laws often say derisively, ‘Oh, it’s just about people who want control!’ And that’s exactly right. People want control at the end of life. They don’t want to be told by someone in a white coat, ‘No, you can’t have this amount of pain relief (because we believe that God should decide these things). You’re going to have to stay here and die in a way that we think is right.’  

MSL: Nurses might find themselves having to choose between their patient’s wishes and the conscientious objection of a colleague. I had an experience in a palliative care context where the team leader was morally opposed to providing extra pain relief, and it would have been insubordinate to escalate the situation. What’s your advice? 

AD: Nurses should speak up! The VAD legalisation is challenging and changing the conversation in the medical profession about patient-centred care. It’s not going to change overnight but there are a lot more people in the medical profession who are having this conversation now. These new laws allow for a fundamental shift in the conversation. There will still be people who conscientiously object – and they have a right to – but I think it’s going to be a slow-rising tide and as the medical professionals and patients get educated, more institutions are going to have to ask themselves, ‘How legitimate is our claim to patient-centred care?’ 

MSL: The laws in Victoria prohibit health professionals, specifically doctors, from initiating the VAD conversation, and of course it’s important that nurses and other health-care professionals abide by the law. How do you suggest these questions are fielded when a patient brings the topic up? 

AD: I don’t have a good solution to the situation in Victoria. It’s important that people follow the law. Those safeguards were built in for a reason, even though I don’t know any medical professional who thinks it’s a reasonable thing. There’s no other legally available medical treatment that medical professionals are not allowed to discuss with their patients. Hopefully it will be changed. But I have to argue for the law to be followed, so I don’t have a solid piece of advice for nurses in Victoria, other than saying to patients, ‘If you’re deeply concerned about what’s going to happen to you at the end of life, the next time you speak to your doctor, ask them about your options. Ask them about what you can do to be in control.’ In Western Australia, Tasmania and South Australia, which have since passed laws, they do allow health-care professionals to initiate the conversation, as long as they mention all the treatment options, so that’s an improvement, based on what’s happened in Victoria. 

MSL: Some GPs refuse to be involved with VAD purely because they’re afraid of litigious blowback. Is there evidence from the last 2 years in Victoria to suggest that that’s a valid concern? 

AD: Any GP who says this simply hasn’t paid attention to what the law is. The law is very specific: If you follow these steps, if you follow the law, then you have immunity from prosecution. The law is there, first and foremost, to protect the person in the bed; but secondly to protect the medical professional. Without clarity in the law, everyone’s in a grey area. If there’s one thing that VAD legislation does, it’s that it brings some regulation to a largely unregulated space, and that’s a good thing. 

MSL: What sort of relationship should exist between an advance care directive and VAD? 

AD: This is a very difficult issue! Dementia/Alzheimer’s is the most frequently raised reason why you would have VAD. But what is the core of VAD law? The word ‘voluntary’ and the law insists that you are able to demonstrate that this is your competent and voluntary wish, all the way through the process, not just once but multiple times. In fact, right up to when the pharmacist delivers the medications, they still test you for competency. I think that must remain the core of the law. Now I’m siding with the medical professional: particularly if you’re being asked to administer a life-ending medication, if you can’t be 100% convinced that this is that person’s enduring and competent wish, then I think that puts you in a really difficult moral position. While there are plenty of people on my side of the debate who think that advance care directives should be a part of VAD, that’s not how I see it. I think it’s very problematic. The Alzheimer’s/dementia problem is not going to go away. I don’t have an answer to it. Some people with Alzheimer’s in the Netherlands do access euthanasia, but they still have to prove their mental competency, which means opting for euthanasia and dying early while they are still mentally competent.  

 

‘The nurse’s voice in this conversation has been, and will continue to be, crucial.’ 

 

MSL: In Australia, we’re really relying on a cultural shift. Many people are still really uncomfortable talking about this topic and it can be frustrating.  

AD: I get your frustration! But the conversation has changed so much in 5 short years. Many more medical professionals have come to the barricades. And I have to say, from the first, the group that were there and did extraordinary work in Victoria, South Australia and Western Australia were the nurses. The nurse’s voice in this conversation has been, and will continue to be, crucial, even once these laws are passed all around Australia. Don’t be afraid to speak up, because you’ll be surprised to learn how many people are in the same position as you! 

To listen to this interview on APNA’s Nursing Australia podcast, go to https://www.apna.asn.au/education/nursing-australia-podcast. If you support the idea that we should have a full range of compassionate end-of-life choices, and that we need a better conversation around death, dying and patient-centred care, then please visit Go Gentle Australia: www.gogentleaustralia.org.au. 

The Australian Primary Health Care Nurses Association acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respects to elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.


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