The doctors who think it’s become too hard to die

RN by Anna Kelsey-Sugg for Saturday Extra, 28 Jul 2018.

Intensive care specialist Ken Hillman believes it’s become too hard to die.

When his grandfather died in 1959, it was in his own room at home, with little medical intervention.

“Most people’s grandfathers died at home in those days, because the general practitioner was the last medical representative in that line. If he said ‘there’s nothing more to offer’, then there was nothing more to offer,” Professor Hillman says.

His mother, in contrast, was admitted to hospital 22 times in the last six months of her life.

“She’d always ask me, ‘what’s wrong with me, Ken? If only they could find out what’s wrong with me’,” he says.

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Professor Hillman says there’s a societal expectation that every ailment can — and should — be treated.

And advances in medicine and technology mean people can be kept alive for longer than ever.

“There was a time, not too many years ago, where people talked about pneumonia as being the old person’s friend. It’s a nice way to go,” Professor Hillman says.

“But we can now treat pneumonia — nobody dies of pneumonia in my intensive care unit.

“When you’re surrounded by machines … it’s extremely difficult to die.”

The desire to keep sick people alive for as long as possible, he says, is reinforced by doctors who are “programmed to make you better”.

“Doctors hate saying, ‘I can’t do anything’. We’re curers, healers, miracle workers,” he says.

The outcome, he says, is that it’s hard for us to recognise when a life is better left to end.

“Half of the patients in my intensive care unit are in the last few days or weeks of life. Most of them are older people,” Professor Hillman says.

“One of the things that I find interesting, and I can only talk about the elderly and frail in this context, is that most of these people understand that they’re coming towards the end of their life.”

That can create a conflict with carers and family members, who for “quite normal reasons” do not want their loved one to die.

“You’ve got this poor older person who, if you quietly ask them what their wishes are, understands that they’re becoming frailer … then you’ve got very caring relatives who want everything done,” Professor Hillman says.

Dr Charlie Corke, who also works in intensive care, has seen similar situations play out.

“I’m often saying, what is our goal here? Is it to get them home? Or is it to make them comfortable?” he says.

He remembers one patient with end-stage lung disease and several broken ribs.

“She was in a lot of pain. She was struggling to breathe before the rib fractures and there was very little chance of her getting better, but her family was pushing us to do everything,” he says.

“The next morning her husband was saying ‘she’s in terrible pain’, and I was saying, yes, I’m afraid she is, but as soon as we give her any morphine she stops breathing.

“He said ‘well, please give her some morphine’.”

The husband’s position changed, Dr Corke says, after he realised his desire to keep his wife alive conflicted with what was best for her in that moment.

While death isn’t a subject many of us want to dwell on, Dr Corke says it’s important for people to discuss their end-of-life wishes with their families.

Otherwise, there’s a risk family members will make intervention decisions that aren’t actually in a patient’s best interests.

And when families are armed with information about a patient’s wishes, they’re granted permission to make difficult decisions, Dr Corke says.

“[Families] need enormous permission to stand back,” he says.

“Families saying ‘I don’t want to treat mum’ sounds terrible. ‘Let her go’ sounds like you don’t love them.”

But if a plan is in place, Dr Corke says, family members can confidently say of their dying relative: “They would never have wanted that.”

Both Dr Corke and Professor Hillman say an Advance Care Directive is an important measure for all people to consider.

Include in a death plan:

  • Who you’d like to make medical decisions for you if you were unable to make your own
  • What is important to you, such as values, life goals and preferred outcomes
  • Treatments and care you’d like or would refuse if you had a life-threatening illness or injury
  • Where you’d like to be cared for if you were dying

The legal document outlines your future healthcare and treatment wishes, eliminating any guess work for your family should they ever need to make medical decisions about your life.

“I’ve got a clear vision of what makes my life worthwhile and valuable, and what I wouldn’t accept,” Dr Corke says.

“I’ve seen patients with tracheostomies and peg tubes go to nursing homes and I’ve made it very clear that, for me, that’s not acceptable. I’d rather die.

“Someone can look at me and say that’s what I want.”

Professor Hillman says rather than a plan full of “tick-boxes”, it’s all about what an individual person wants.

“It’s more saying, under these circumstances I would like little or no treatment,” he says.

“If I was doubly incontinent, if I was demented, if I was bed bound, if I had pain that couldn’t be treated — under these circumstances I would like no treatment whatsoever.”

Dr Corke says medical practitioners also need to be honest with patients and their families when certain interventions might be futile.

“We’ve come to a point where there’s always something more that we can do and we can never stop,” he says.

“This idea of, ‘whatever it takes — try and try again’ has become our mantra.”

But he says that power mustn’t be used without thought.

“Doing the right thing at the right time is fantastic and doing the same thing at the wrong time is horrific,” he says.

Having a plan in place can help everyone — including doctors — act in the patient’s best wishes.

“When this goes well, what I see is somebody who’s set some very clear limits to what they wouldn’t want, the family are very clear about it and all agree with each other, and the doctors are given permission to not [intervene] and feel very comfortable it’s the right thing to do,” Dr Corke says.

Dr Charlie Corke and Professor Ken Hillman spoke to Saturday Extra‘s Geraldine Doogue at this year’s Sydney Writers Festival. The conversation was recorded and broadcast by RN.

 

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