STORY - "A good death is about life"
By Rebecca Beisler

Dr Peter Saul

"I have conversations that almost no one would have with people," says Dr Peter Saul.

"You find yourself saying to people - I hope you have a good death. You have a real bonding moment around that, then the patient says, ‘I think that would be great'."

Before I was given the opportunity to interview Dr Saul, a senior specialist in intensive care at John Hunter Hospital, attaching "good" to "death" seemed a hard thing to do. I don't like to think about dying too closely. If I ever imagine the death of my loved ones, I will almost certainly well to tears. I certainly don't talk to them about it.

Death is the opposite of good. But to Dr Saul, a good death is not only possible, but optimal.

"It is about having some kind of recognition of who you are as an individual. There is something about it that honours who you are."

Over the span of his career Dr Saul has seen about 4,000 people face death. Somewhere between 15 and 30 per cent of his patients do not survive and at least six times a week he faces the question of whether or not to withhold a patient's life support.

Born in England, Dr Saul moved to Australia in 1988 and has worked at both the Royal Newcastle Hospital and John Hunter. He has taught medical ethics at Newcastle University and sat on the Hunter Ethics Committee. Recently he has worked with NSW Health in forming and promoting state policies on end-of-life care.

Last year he became clinical director of the Commonwealth Government initiative “Respecting Patients' Choices” which is being trialled in the Hunter and New England regions. The program has $750,000 funding to improve people's involvement in their own care.

Dr Saul said the motivation behind the program is the fact that most people do not prepare for their own death. It addressed the dilemma doctors faced when nothing more could be done for a patient and the patient was too ill to tell the doctor themselves what they wanted to be done next.

A survey of Newcastle nursing homes indicated that 99.8 per cent of residents did not have a plan for what happened to them when they got very sick.

"A typical scenario is an old man gets burnt, he is very sick and is unable to make decisions for himself. We go through a process of trying to identify who would help us make a decision. We use the guardianship act which says it's his neighbour...she is shocked to find this out and doesn't want to do it. We ring his son and he says do everything (to save his life) then we ring the daughter and she says no, let him die. A fight breaks out between the son and daughter which goes on for days and they never speak to each other again. That's a made up case but it is absolutely typical of what happens in the hospital ten times a day."

The Respecting Patients program encourages people to talk about their own death and to think about who would make decisions for them in the event they could not make the decisions themselves. This is something which Dr Saul wished more people did.

However, death is not exactly dinner table conversation.

"Every other taboo that we've ever had seems to have disappeared while the taboo about death seems to have become stronger," Dr Saul said. People may think about death all the time but never talk about it for fear of hurting the people around them. This is what Dr Saul is trying to reverse.

The next obstacle Dr Saul had to overcome was euthanasia. Or rather the confusion of euthanasia as the deliberate act to cause death and advanced care which involves planning for a person's death and may involve a decision to withdraw life support.

"Euthanasia to me is the deliberate act to kill someone," Dr Saul said. "I'm an intensive care specialist so I couldn't possibly support that. I'm intent on saving lives."

According to Dr Saul, giving people control over their own death actually dropped the demand for euthanasia. "What we've discovered so far is that requests for euthanasia actually diminish if you engage people at an early stage in discussions about their own health care.

"People want euthanasia because they feel out of control, disempowered, abandoned. Once you provide people with some sort of reassurance that you will listen to them and try to take into account their particular ways and values, then the desire for some sort of state sanctioned murder or whatever you want to call it disappears."

Despite the rise of modern medicine, death remains inevitable for all of us. But Dr Saul said it is not actually death people fear. "Nobody's afraid of death because we're all born knowing it's going to occur. I think what were afraid of more is the process of dying. The most common question by far is what will it be like - what will my dying actually be like? I think that's what people are afraid of."

For some people Dr Saul said faith provided a safe backdrop to discuss what happened when death approached. "We all know we are going to die but it's probably more likely people with faith will find meaning in that," he said. "People with no faith approach death as if it was the loss of everything meaningful."

All the chaplains at the hospital had undergone training through Dr Saul's program.

"The presence of somebody from your faith reassuring you that what's happening is consistent with your beliefs is very important."

Dr Saul said his own beliefs helped him find meaning in his work. "I would never have been attracted to this area in the first place if I did not have my own beliefs. My own beliefs make it less threatening because I do believe there is a reason why we are born and why we die.

"There would be no great point in living forever."

Rather, Dr Saul has faith in a good death. "There is a lot of research into what makes a good death," he said. "A lot of it is about having some kind of recognition of who you are as an individual. "People are interested in dying with dignity but that's not the same as aesthetics. You can go out screaming. If that's who you are, that's who you are."

Dr Saul has heard many wishes from people who want to die in a particular way. He talked about a patient who wanted a penny in their hand and another who wanted to have the window open so their spirit could fly out. One person wanted to die with a football match playing.

"That's what I think is a good death - if there is clearly something about it that honours who you are."

Dr Saul suggested this is what euthanasia supporters may have got wrong. "They think a good death is where you become unconscious and stop breathing; if you don't wriggle and squirm and it isn't messy. There is something about it that looks good from the doorway.

"But if that isn't who you are then that isn't a good death at all. That's someone inflicting their idea on you."

Dr Saul said the Catholic Code of Ethics directs people at this point in their lives to weigh up the benefits and burdens of continuing life. "The Catholic Code of Ethics talks about what is too much of a burden and too little of a benefit. What it doesn't say is how that is meant to be decided.

"What I'm saying is that the patient has a role in deciding what is too much of a burden and too little a benefit."

Dr Saul said very few people actually know the values of those who are close to them: whom they want to be involved in their death, what's important to them, what's positive about their lives.

"You say to the family, ‘There is nothing more we can do.' They say, ‘OK. I'm going home' and just walk away."

“I'm afraid to say that's the majority of cases. In 2006 you die alone.

But he has also seen the other side.

Dr Saul recounted the story of a very sick woman. "We couldn't understand what was keeping her alive. She should have been dead for days but for some reason she just kept going on and on."

"In an idle unguided moment I said to the family, 'I don't know what's keeping her alive, by rights she should have just died.' The family said to me: 'We know what it is.' They went into the room, held her hand and said to her, 'Mum you can die now. We'd know you'd never die on us without knowing we're all safe but we are safe.'

"The woman died within the next minute.

“To me, that is a good death because everyone recognised who she was and what was special about her and gave her permission to be that. The family walked away having grown somewhat."

A good death is perhaps all about life.

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