We die less readily than we used to.
In recent decades, life-support medicine has improved to the extent that millions of lives that might otherwise have been lost are saved with powerful antibiotics, while machines breathe for us and take the place of failing organs. We live through events that might have killed us.
But what if the treatment that saves us is difficult, even degrading, or the life afterwards is unbearably impaired? How can we decide if that's better for us or our loved ones than slipping away peacefully from pneumonia, the "old man's friend"?
Intensive care units have been common in hospitals only since the 1960s, and our cultural norms around care have simply not evolved as quickly as the care itself. We may not know what to expect, nor even what we really want. We may even have to take decisions that challenge our deepest beliefs.
That's the landscape addressed in Letting go: How to plan for a good death, a new book by Australian intensive care specialist Dr Charlie Corke.
"Everyone's trying to do the right thing," says Corke. "It's just a matter of trying to navigate it. To me, the book is like a satnav for the end bit. You've got to know where you're going to get there without a mess."
Corke observes that "unless you're unlucky", most of us now will live past our 80th birthday, often with chronic illnesses — and very few of us will see our 90th. The core of his book is the belief that before we enter those years we need an advance care plan containing our written wishes — and, ideally, naming someone who can make decisions we might not be able to make ourselves. It's distinguished by its practical air and by the inclusion of stories from a career in ICU, where these decisions are often made.
The book tells the case of Madeleine, Corke's own patient and an elderly nurse, who had stated in a written, witnessed advance care plan that she did not wish for any form of resuscitation. But when she suffered a common complication after "clot-busting" treatment following a heart attack, Corke had to make an instant decision, knowing both that she had declined resuscitation and that defibrillation would almost certainly result in a full recovery. He revived her — and not long after, told an initially indignant but alive and well Madeleine what he had done. She eventually approved.
The story underlines Corke's belief that these acute care decisions weigh not only what might be written down but on an understanding of the patient's values. He knew Madeleine well enough to act on what he believed she would want, but it's rare for an ICU doctor to be in that position. Hence, the importance of a nominating, in advance, a person to make that call.
That's often a family member — but not always. Indeed, Corke has distressing stories of families who kept loved ones alive against their written wishes, not out of any hope of a decent life, but because they could not bear to make the decision.
"It's about their need to try, the need to not give up," says Corke. "Which trumps, really, the wishes of the person involved."
One thing no doctor should do, Corke believes, is tell a family the resources keeping their loved one alive could be better used elsewhere.
"I don't think that ever works. It's never helpful. For me, the price is about suffering, no
There is an awful lot of healthcare cost that has no benefit to individuals. If we were able to choose more wisely, we would all be in a better position."
Although advance care planning is not the same thing as voluntary euthanasia, it's hard to think about one without the other. Corke acknowledges than many disability advocates are uneasy with ideas about what kind of life is — or is not — worth living.
"But just because you're disabled doesn't mean that you can be denied your right to control your life — and this is part of that as well. So one of the issues we have is that if someone is disabled, it's possible that you go on much too long. Our Disability Commissioner has been concerned that the right to control life is taken away by being too paternalistic. Just because you're disabled doesn't mean you can't suffer."
What characterises families who get this right?
"Listening and love, I think. And experience: if people have seen it in others, they tend to recognise it. But because we're all rather protected from death now, we don't see it. It comes as a bit of a shock.
"The main points of a good plan are clarity of what you want and don't want, that is understood by your family. It perhaps involves a bit of emotion as well as facts, and it's convincing for the family in a way that they say, 'Mum would absolutely not want this and we don't want you to do it' – or 'Mum would definitely want this and we do want you do to it.' It's important, in an advance care plan, that it's about what people do want as well as what they don't. It's both ways. It's not just about saying no."
Betty Blake, 71
Betty, 71, was a nurse for many years and her career has spanned the revolution in intensive care.
"Early on, I was in a ward where the most critically injured and sick people were being nursed. And we were lucky if there were IVs up. We just cared for them for comfort — everyone knew that there was nothing that could be done except keeping them comfortable.
"Then I worked in the newborn unit, where I looked after babies who were 23 or 24 weeks gestation, back before ventilation care was available. Those little ones did not have a chance of surviving. And certainly, you would never have thought of putting someone my age on to ventilated care. Now you would have some expectation — if there was a lot of hope for recovery from surgery or some other life event, then you would pull out all the stops. But I would not want to finish my life in a state where I didn't know who I was and who my family was."
She spent the last decade of her nursing career in rest homes and hospices.
"That, along with friends dying, was a real catalyst for me galvanising myself into formu-lating my ideas on paper," she says.
"Some of the key things are that I want to be able have some control and decision-making about my end-of-life care. I strongly support physician-assisted care for making a decision if you're in intractable suffering, so you can bring closure to that.
"I've got things around what I would not have. If I was severely affected cognitively, say in a motor vehicle accident, and there was there no sense that I was ever going to retain the person I am now, I wouldn't want to have IV fluids for hydration. I wouldn't consent to having a feeding tube in for nutrition, I would go for care for comfort and allow myself to say, 'Well, this is my time.'
"A copy of my plan is at my GP's, both my daughters have it, and my husband has a copy in our document folder. Because I know that I have family members who believe that it's God's will when you die, and that suffering is actually there to either test you or teach other people lessons. And I don't believe that."
In general, she says, family members have understood what she is doing.
"In our family growing up, those life issues that start with conception and birth and contraception and safe sex have always been topics we have shared with our children. There weren't taboo topics. Working in the newborn unit and in paediatrics, our kids were exposed to that, and children dying and families being upset.
"I think because we had those conversations, and we had the terminology that was right, then making some decisions and putting words to them and not getting emotional about it because the words and the concepts are so scary made it easy."
Is the onus now on doctors, unless instructed otherwise, to use every tool at their disposal to prolong life, even when it might not be the "right" decision?
"That's a really difficult question. I guess my experience helps me to believe that once you start going down a track, it's really difficult to pull back treatment and work in partnership with the families and make some decisions about whether this is absolutely futile care." Blake says.
She agrees that the huge advances in what care is possible demand a high degree of emotional intelligence in medical professionals.
"And I believe it takes the same amount of emotional intelligence and social capital to be able to be as explicit as I have been."
Leigh and Ellen Russell
In 2014, Leigh Russell's mother Ellen suffered a fall at home that badly affected her health, left her in frequent pain and meant she could no longer live independently.
As Ellen entered a rest home, her family – and especially Leigh, who was assigned enduring power of attorney (EPA) for personal care – began to wrestle with questions around her care.
One of the first issues was that Ellen's GP, who she trusted, was not the doctor contracted to provide care in the rest home. Ellen was "not about to let Dr Dave go", and he was confirmed as her doctor.
"And the questions did keep arising. For instance, Ellen said she didn't want to die in hospital but, after one hospital experience when she became very ill with an infection, which was able to be successfully treated, I realised that this could happen again. What then? The answer was that if she became too ill to be treated at the rest home, which had a hospital-level care wing, she would need to go to hospital whether she liked it or not. Also, if she required resuscitation and her instruction was that she wanted to be resuscitated, the rest home staff were not permitted have a go and then abandon the attempt if unsuccessful — an ambulance must be called."
In the end, Ellen's written instruction in the advance care plan she drew up with Leigh's help was that she not be resuscitated.
"Dave explained to Ellen that for an elderly and frail person, by far the most likely outcome of resuscitation is very poor quality of life, if indeed they are able to be resuscitated. Mostly they are not. In light of this, she made it clear that she wouldn't want to be resuscitated."
Agreement on the plan was not quick or easy, she says.
"It's not a subject that is easy to raise and talk about with an elderly and frail person. Doing this with Ellen was one of a number of difficult subjects I raised and went over with her, and got the whole thing set up. It was not just one conversation, it was a number of them, and each of these conversations took grit, determination and time."
Time, she discovered, can be precious. A plan must be signed off by a doctor, who will warrant that the patient is of sufficiently sound mind to make such choices. An elderly patient's ability to meet that test can erode quickly, or even come and go.
Leigh had also determined that "hospital-level" care in a rest home was not comparable to actual hospital care. She insisted that Ellen remain in hospital after it was known that she was dying, and won that concession "by a narrow margin". Again, "Dr Dave" weighed in when a hospital charge nurse tried to send Ellen back to the rest home.
It was, she acknowledges, a draining experience.
"The growth in our ageing population makes this a very real issue. It's not just more aged care facilities, specialist gerontologists, and teams of care-givers that are required, it's a sufficient pool of able-bodied people within our communities to provide the very necessary companionship and support. Just the thought of this makes me tired!"
Ellen passed away peacefully in hospital, aged 85, in January 2017.
Leigh and Ellen Russell are pen names, used in Leigh's blog, for privacy reasons.
Valerie Schroder, 76
Like many people who write advance care plans, 76-year-old Valerie came to the process after first establishing her wishes for what happened after her death — in her case, a natural burial without embalming. Eventually, she decided, "I wanted to do it all before I lost my marbles."
She sketched out a plan using the Our Voice website and went through it with her doctor and her son (who she granted enduring power of attorney) and daughter. It helped that she went in with a basic idea of what she wanted.
"Having experienced a very close friend dying of cancer, and my mother, and seeing the process, I certainly don't want to be lingering on. The whole thing of more and more treatment, more of this and more of that just to stay alive, I can't see the point of that. I'd rather have quality."
But planning, she says, is not all about medical interventions.
"It goes through your interests and what you care about and how you want to live your life, and what sort of treatment you'd want when it comes to the end. And at the very end, say if you're in a hospice or at home dying, what sort of things you would want, who you'd want with you, what sort of music and so on."
There have been difficult elements, she says — not least that her wishes could mean that a son who lives in the UK might not be able to get back in time for her passing. Nonetheless, it's been a good family experience.
"It's been really lovely with all three children. There've been lots of jokes about burying me in the back garden and that sort of thing.
"But hopefully all of this is away in the future. I'm not old yet!"
Our Voice / To Tatou Reo
An indispensable guide to ACP in New Zealand.
Charlie Corke's site allows anyone to respond to 60 statements and generate a profile clearly stating who they are and what they want.
Elderly and dependent: finding the way forwardLeigh Russell's writings on eldercare and planning.
Letting go: how to plan for a good death, Dr Charlie Corke (Scribe, 2017)
Charlie Corke will talk about Letting Go in one session only (Saturday 10 March, 4.15pm) at Writers and Readers as part of the New Zealand Festival.
Being Mortal: Medicine and what matters in the end, Atul Gawande MD (Henry Holt & Company, 2014)
Where to get help:
• Lifeline: 0800 543 354 (available 24/7)
• Suicide Crisis Helpline: 0508 828 865 (0508 TAUTOKO) (available 24/7)
• Depression helpline: 0800 111 757 (available 24/7)
If it is an emergency and you feel that you or someone else is at risk, call 111.