SPRING has arrived. As we sit under a flawless blue sky, absorbing the sunlight and sipping capsicum soup at Uprising bakery in Maryville, Peter Saul and I talk about dying.
As a senior specialist in intensive care for Hunter New England Health, Dr Peter Saul knows a lot about the subject.
“I work in the most acute of all acute forms of medicine, intensive care, and our absolute role is to stop people from dying,” he says.
Dying is a subject most of us try not to think about, let alone discuss. We turn away from the inevitable, in the vain hope death never looks us in the eye.
But Saul faces death each and every day at work. In an intensive care unit, “it’s like you’re in this very unusual world that’s somewhere a little between life and death; it’s a whole other space.”
Rather than have the space echoing with silence, Saul wants it filled with talking and understanding, so that those in the last stages of their life, and their loved ones, feel a little less helpless. And he’s leading the conversation, from chats over lunch to conference presentations and a very popular TEDx talk on the internet.
“Why I did get so involved in talking about dying was because for at least one in eight of my patients, it’s not to be that they will survive,” he explains. “For three out of 10 patients currently in hospital, they won’t be here next year. Eight out of 10 people in a nursing home won’t be here next year. Eight out of 10 people in hospital now with cancer won’t be here next year.
“And that’s not something we can fix. It’s not like indefinitely prolonging somebody’s life is really even an option.”
Yet technology and advances in medicine mean there are now options, when not so long ago there may have been none. But those options don’t always lead to good outcomes, or a comfortable death.
“Cicely Saunders, who founded the hospice movement, said the way we die lives on in the memory of those who survive,” Saul says.
“We’re having enough episodes now of preventably bad dying that we’re creating an atmosphere of fear about death that didn’t exist when I was a kid.”
PETER Saul was born in 1951 in an English town that had been slowly dying.
Burnley was an old mill centre in Lancashire, where his working-class family had lived for generations. But by the time Peter arrived, the textiles industry and the jobs had all but left town.
Death was a regular presence in his grandmother’s home, where young Peter would go most afternoons.
“Actually, my grandmother was an amateur undertaker,” he recalls. “So I’d come home and find a dead body in the lounge room.”
Peter was also living with his father’s long-dead dream of being a doctor; instead, he made a living in a cattle slaughterhouse.
The family desperately wanted to leave Burnley: “I think you have a choice to make. You either die with it, or you escape. And that’s how we felt. We had to get out of there.”
The family moved to a seaside resort, Morecambe, about 100 kilometres away. But Peter had an even clearer escape route: “It turned out I was clever, and I was the first person in our whole family to finish school”.
While his boyhood dream was to be a tap dancer (“I loved Fred Astaire movies”), Saul decided he wanted to be a doctor. That ambition began in Burnley, when he saw the local doctor had a car and a driver. But his desires stretched beyond the material; he developed the “very romantic notion” that, as a doctor, “I can save lives”.
“It’s a term now I discourage using,” he says. “It makes great click-bait, you know ‘life-saving medication, life-saving operation’. In the right circumstances, you can divert dying significantly.
“The term ‘life saving’ rings a bit hollow. I feel it’s equally important to think about the quality of the survival as much of its duration. I think you have to take a more balanced idea of what we’re trying to actually do with people now.”
Peter Saul was accepted into the University of Cambridge: “I did feel like a fish out of water, because there weren’t a lot of people like me there.”
As well as studying medicine, Saul undertook a Master of Arts, concentrating on the social and political sciences, because “I was desperate to understand what other people had gone through and thought in the past”.
Those studies fed into his growing interest in medical ethics, a field that Saul has pursued throughout his career. He is a founder of the Clinical Unit in Ethics and Health Law at the University of Newcastle, and he’s advised the NSW Ministry of Health.
As a medical ethicist, Saul is keenly observing the changing nature of how doctors and patients work together: “Historically, medicine has always been, ‘You’re sick, my obligation is to make you better’. I think the future is going to be, ‘I’m sick, and this is what I want you to do about it’. I have to take that on.”
While at university, more than just formally study humanity, Peter Saul became engaged with it through politics, as a “radical red-hot leftie”. He was heavily involved in protests and was arrested a few times.
“I was lucky not to get thrown out of medical school,” Saul says.
But he did graduate with a degree in medicine, in 1976. Peter had become what his father had dreamed of being. So what did his Dad say to him?
“You won’t believe me,” Saul replies. “Nothing.”
Later, when Saul studied anaesthesia, he was given a Royal College of Surgeons tie by his father as a graduation present. Saul still has that tie: “It will be with me till I die, that tie. I knew he was proud of me, but he didn’t say it.”
Saul worked as a GP in London in a depressed area around Shepherd’s Bush. His ideal of helping the underprivileged was sorely tested.
“I burnt myself out almost immediately,” he says. “So the combination of being very passionate and finding myself in that unbelievably awful setting was too much. I ended up drinking a lot. I wasn’t coping at all.
“So I gave that up. I went into hospital practice. And I went into therapy. That’s how bad it was. I realised I needed something other than politics.
“I had the sense that I had to be very together, if I was to be any good.”
Saul was at Saint Bartholomew’s Hospital, working in the relatively new field of intensive care, when an Australian colleague recommended he head to that part of the world, since it offered specialist IC training.
In 1984, Saul, along with his wife, Ann, and their young son, Steve, headed to Sydney. He knew next to nothing about Australia. But he quickly fell in love with the place, especially after a barbecue at a doctor’s house overlooking Pittwater.
“I remember just looking over the balcony at this beautiful stretch of water, with these glorious trees and parrots flitting, and thinking, ‘I am never, ever, EVER going back to England. This is it,” he recalls.
But Saul did leave for a time, working for a couple of years in the United States, dealing with a “shambolic” health system and the bitter Boston winters. So when he received a call from Newcastle, as the hospital urgently needed an intensive care specialist, he couldn’t board a plane to Australia fast enough.
When he arrived in Newcastle in 1988, Saul felt the city had the air of an industrial town on the slide. In some ways, it felt like returning to his childhood home. But he stayed, helping individuals and a city through the most trying times.
Peter Saul was on duty on December 28, 1989, the day of the earthquake. The intensive care patients in the Royal Newcastle Hospital had to be evacuated to the beach.
“It was awful,” he recalls. “I don’t think anybody realises just how bad it was, because nobody really wants to talk about it. It tested everything we could do to the max, and we found it very wanting.
“I think we were very lucky that it wasn’t worse than it was.”
Working in intensive care, Peter Saul has had to deal with many challenges, working on the cutting edge, technically and emotionally, but that’s a strong reason why he remains “spellbound” by the job.
“I don’t want this to sound self-serving, but you’re kind of the last resort,” he says. “To make it sound less posh, you’re like the goalkeeper on a football team. If the ball is going into the net, it’s going to be your fault in the end. So when everybody else has done what they can, it’s our turn.”
The ball sometimes goes into the net. Peter Saul has had conversations with about 4500 patients and their loved ones about advanced care planning and preparing for the end of life.
He came to realise that dying was something people weren’t talking about. Many doctors weren’t talking to patients about it. Patients hadn’t talked to their loved ones about it.
“One of the reasons I got interested in that was we’d have elderly people in the ICU, been married 60 years and had never talked about what mattered to them,” Saul explains. “They couldn’t give any account of what their husband or wife would have wanted.”
In 2011, Peter Saul pushed along the conversation when he appeared at TEDx Newy, with his presentation, “Let’s Talk About Dying”. He sure got people talking, and watching; the presentation has been viewed on the internet almost a million times. Which tells Peter Saul just how much people do want to talk about dying and end-of-life care.
And, he says, they need to. At the same time that death has become increasingly remote from everyday existence, medical technology means decisions can be even more difficult and complicated when someone is facing the end of life.
“I think we fear at least the decisions we may have to make,” he says. “Very unfamiliar. Like, ‘Do you want to be dialysed? Do you want to be intubated?’. These are all questions that no human being has had to encounter in history before. We have options.
“Every time we come up with a new solution, it creates a new question. Every breakthrough, every new drug, every technique, then you have to work out to whom does this apply, and to whom does it not apply.
“Everybody wants some sense that they’re going to die in a way that’s appropriate, well-managed, they’re going to have some input, some control.
“We need to take back the ownership of the whole process of dying from the system . . . It’s been medicalised to the point where we don’t own it anymore.”
Saul argues what doesn’t address the end-of-life issues he’s been talking about is euthanasia. He is not a euthanasia advocate: “I feel that euthanasia has taken way too much heat and interest, when we should have really been talking about, ‘How do we cope with this in our own families? How do we have these conversations? How do we make it so Mum doesn’t get the treatment she doesn’t want?’. That, to me, seems far more important.”
Yet, Saul says, it’s not just patients and their loved ones who need to think about the questions and decisions surrounding end-of-life care; so do many in the Australian medical community.
“We’re brilliant at keeping people alive,” Saul says. “We’re the world’s best country at preventing premature death. We’re very good at palliative care and getting better all the time. What we’re absolutely crap at is choosing which of those we’re trying to do. We’re babes at making the hard decision as to whether or not we’re actually trying to cure somebody, or whether our intention is really to keep them comfortable.
For Saul, his awareness of dying and its impact on those left behind has been shaped not just by his medical experience and the thousands of conversations he’s had with patients.
In 2006, his second son, Zack, took his own life. Zack was aged 20.
“One of the things we’re taught to say is, ‘I can’t imagine how you feel’,” he says. “I don’t say that anymore, because I can. When somebody’s in there, having lost a child, I can imagine how they feel.
“I actually think that the fact I’ve been through something that’s as bad as what most people are going through probably gets me in their corner a little more. I’d never say it. I’d never say to somebody, ‘I’ve lost a child as well’, because all you’d be doing is taking away, but what I think I can give is, ‘Yes, I do have some experience of how that felt’.”
“I think death is very real for me. For me, having had a death so close, it’s not just hypothetical.”
Saul is never away from his patients, at least not in his mind. He says a part of him is always in the hospital, wondering what more he could do in each case. The demands of the job, and perhaps the demands he places on himself, have taken a toll on Saul’s personal life. His first marriage ended. He is now married to a fellow medico, Jenny, and they have two teenage daughters.
Saul hasn’t had a hobby. No time. He once bought a boat but never used it, so he sold it after a year. But he has recently bought a small farm near Clarence Town, where he and Jenny are growing garlic: “It’s a wonderful idea, I recommend it, just to be out there, trying to grow things, keeping things alive. It’s a bit of a habit.”
After navigating through, and caring for, so many lives coming to an end, I wonder how Saul views his own mortality.
“I think I’m still scared of dying. It hasn’t improved. I’m reassured that death is not as bad as people think. I’ve witnessed that enough to know that people go quite gently on the whole. So to that extent, it may have reduced my own fear.”
But fear won’t stop Saul talking. And he hopes more and more will engage in having one of the most important conversations in anyone’s life.
“People sort of say, ‘We will talk about death and dying, there’s time’,” Saul says. “You can’t say that. You cannot know there’s time. It’s not given to you to know there’s time.
“Anything you’re prepared to say, to disclose about yourself and your values, will have a dramatic effect on what happens to you.
“You can say positive things, you don’t have to say, ‘I don’t want CPR. I don’t want ventilation’.
“To state the bleeding obvious, we all have to die. So why not include that as something you have some interest in, and some investment in? Rather than it being some sort of defeat or curtailment of you as a person.”
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