Sarah Forster reviews Ready to Die? with Charlie Corke, at the NZ Festival Writers & Readers Festival on Saturday, 11 March.
Dr Charlie Corke’s book Letting Go is a powerful book about how we handle these final moments of our life. Dr Corke is a career-long intensive care specialist, and he wrote the book to fill a gap for those sitting with their dying loved ones in their final moment. He notes later ‘I got into it for the machines when I was young, and as I got older I became more thoughtful.’
This session was chaired by the reliably excellent Jo Randerson, who began with the question ‘What does a good death look like?’ Dr Corke says, ‘Death is always bad, but we can make it worse. In general, deaths that are anticipated and planned for and gentle, where the family and loved ones are there – with few tubes, and little intervention are what most of us aspire to. And then there is the opposite of that.’
Part of his aim while writing the book was to express how far we’ve come in intensive care. When he began practising medicine, intensive care and kidney dialysis wasn’t even considered for anybody over 65. This discussion is now happening for older people, which means it is more ‘real’ – the person involved is not able to contribute usually. And you need family to decide what to do.
One of the things Dr Corke campaigns for is for people to have end-of-life care plans, which Letting Go includes suggestions of at the back. An end-of-life care plan is something between a patient and their doctor, based on a conversation. This means there has been a discussion about limits of what is acceptable and not acceptable. The problem with these ideal plans is, he says, ‘Doctors wait for patients to say, and patients wait for doctors to ask.’
Why do we resist? The vast majority of us think that when the time comes, our family and our doctor will know what to do . But that’s not quite true. Dr Corke reminds us that when we are confronted with this crisis, there is always something to do now – the question is whether this something is acceptable to the individual whose decisions we are making. ‘You don’t want to treat somebody who doesn’t want to be treated, or not treat somebody who does.’
At the point of being housebound with a chronic illness, 95% of patients are beyond planning. If you begin a plan now, before you are unwell, it is much easier to tweak it as you go. Dr Corke wants everybody to consider it.
In past years, a care plan has included technical details – what tubes are okay, and which ones aren’t – but now we are moving to answering the question ‘What situation is unacceptable to you as a person.’ A bit of poetry is best. The worst deaths are where nobody agrees on what a person who is unable to make their own decision wants – when they have a plan, or do agree, Dr Corke likens this to a perfect dive.
Both Jo and Dr Corke gave personal examples of situations throughout this session, which drove home just how important this work is.
Part of having a care plan can be to select a ‘substitute’ in your care plan that you would trust to make your decision for you. Dr Corke notes that family often aren’t that respectful of decisions made by elder relatives. You need somebody who will listen to everybody respectfully, and make a decision on the information at hand. He has appointed his eldest daughter as his agent. He is concerned that his wife likes him and would keep him going longer than he wants. He has told his other daughters and they have agreed that she is the right one – they reckon she’s ‘hard.’
Dr Corke has set up ‘my values .org’ as a space to talk about what we want at the end of our lives. The values in this area are about independence, on the other end being prepared to be looked after. Within those values we can get a perspective on where people are at.
We then discussed dysthanasia. Dr Corke says, ‘Dysthanasia is something we can all agree we don’t want – this means, literally, ‘bad death’. ‘ This is the name for screwing up death with too much medical treatment. He is looking forward to people understanding this, that they don’t want too much medical intervention making a mess of things.
Dr Corke notes, ‘If there is no plan or discussion, then the system will just carry on and do everything to prevent death. You now have ambulances who will come to your house and resuscitate everything – then the patient moves to the intensive care department, where everything has to be done within seconds – xrays, blood … In first world countries, our systems are geared to do it, and to not do it is becoming increasingly hard to do.’
This session was full of shocking facts – perhaps the most shocking for me is that 70% of treatments in ICU work are provided where they can’t and won’t save lives. Dr Corke wants people to know this because he can’t see the medical system changing on its own – it needs a grassroots movement from patients to make it re-think its philosophies. ‘We need to say medicine is a good thing, but it can go bad.’
Jo brought up the concept of Christianity and how it impacts end-of-life treatment. Dr Corke said he doesn’t know what happens when we die. ‘Personally, I just don’t want to leave a mess.’ They agreed though, that funerals are important as that is where we often have the hard discussions about what people mean to us.
The discussion turned a little to the past, when death was witnessed more frequently, and Jo noted that there are no longer as many frameworks around death now that we all live so far apart, and there is so much intervention. We have a tendency to put it in a box. Dr Corke said, ‘Noone wants to talk about it, but when people are being frank about it you will find that families will discuss it together. You need to listen to each other.’
The questions in this session were worthwhile and thoughtful, and I’ll give the final word to Dr Corke: ‘You don’t resent having fire insurance for the house. Likewise, you don’t resent having an advanced care plan.’
Reviewed by Sarah Forster
Letting Go: How to Plan for a Good Death
by Dr Charlie Corke
Published by Scribe Publications