When it’s time

AUSTmagLOGOOn a mild autumn day earlier this year, Keith Cooper was admitted to Melbourne’s Austin hospital with pain and tenderness in his belly. Diagnosed with generalised peritonitis, possibly from gall stones, a perforated ulcer, or maybe an inflammation of the pancreas, his condition wasn’t considered critical. Certainly not serious enough for immediate medical intervention.

So Bob, as he was known to his friends and family, was scheduled for an ultrasound the following morning. His wife, Carmel, made sure he was comfortable and went home.No-one was panicking. No-one thought he was on the edge of death. Not quite 72, Bob did have serious health problems: mild Parkinson’s disease, heart disease, and diabetes that had led to kidney failure and the loss of a foot. He had been admitted to hospital many times over the years, and there had been some terrible scares, yet he had always pulled through and his condition had been fairly stable for a while.

Bob enjoyed his life and loved his wife and five children and adored seeing his grandchildren and great-grandchildren growing up. A friendly and easy-going man, he had worked hard all his life as a tiptruck driver and then a weighbridge operator, and in retirement he liked messing around in his boat on Victoria’s Lake Nagambie.

Carmel rang him at the hospital the morning after he was admitted and he told her the pain was bad but the nurses were there. He told her he loved her. Later that morning she was outside sweeping the driveway of their home in Reservoir, north Melbourne, when one of her daughters called her to the phone again. It was a surgeon who said Bob needed an urgent operation, so urgent there was no time for his wife to even have a shower and get to the hospital. Bob’s condition had plummeted overnight, he was dangerously ill with an acutely painful abdomen and rapidly deteriorating vital signs; difficulty breathing and difficulty swallowing. The doctor wanted Carmel to give permission over the phone for emergency abdominal surgery.

It was an appalling moment for her; an earth-shattering, brain-blanking, life-altering moment of paralysing fear. Without immediate surgery her husband of 53 years would probably die, but even with surgery there was no guarantee he would return to the life he had known. And Bob hated the idea of life support measures. He had once been treated in an intensive care ward, had a tube put down his throat. He told Carmel he never, ever wanted anything like that to happen to him again.

In 2010 he had written what is known as an advance care plan, a legally binding document that outlines a patient’s wishes regarding end of life care if he or she becomes incapable of making conscious decisions. Bob had joined the thousands of Australians who have decided to take death, and the logistics of how and when they die, into their own hands. In Bob’s plan, which he drew up with the help of an advance care planning clinician called Diane Chaffers, he made it clear he didn’t want aggressive medical intervention if there was no hope of a reasonable outcome; no hope that he could resume the life he knew. If he couldn’t speak to his wife and kids, if he couldn’t spend time with his family, then it would be okay to stop treatment – it would be okay to let him die.

Chaffers is also a renal nurse and she had treated Bob in the past, so she explained the idea of advance care plans to Bob and Carmel when she saw him in hospital a few years ago. As a clinician with the government-funded Respecting Patient Choices program, which deals with end of life care, she helps patients draw up plans to ensure their treatment doesn’t take them any further than they want to go. Patients can make it clear they don’t want to survive on life support, for instance, if there is little chance they will ever breathe independently again. Patients who draw up advance care plans are also encouraged to appoint a trusted substitute decision-maker. “We discuss with the patient the choices that they would like made with regard to medical intervention if they are so ill that they can’t speak for themselves,” Chaffers says, “whether they would want continued medical treatment or measures designed to keep them comfortable.”

Carmel Cooper had encouraged her husband to write an advance care plan, but now, as she grappled to absorb the quickly unfolding events, the crunch of refusing permission for live-saving treatment was too much for her. She needed help. She couldn’t make a decision like that on her own, regardless of Bob’s carefully written wishes. It was all too much and she had no time.

But very quickly another doctor rang her, a senior kidney specialist who had been called in to look at Bob. Diane Chaffers was there at the hospital and she remembers the discussion about the surgery and Bob’s advance care plan, and the question of what kind of ‘outcome’ Bob could expect if the surgeon went ahead with the operation. The senior kidney specialist decided Bob’s prospects were poor.

He told Carmel over the phone that the doctors had taken Bob’s advance care plan into consideration, assessed his condition and decided not to operate. They thought his prospects were poor, and palliative care to reduce the pain at the end of his life was a better alternative than surgery. They had decided to let him go.

The prospect of a protracted and painful death is something most of us try to ignore. Death creeps up on us, and by the time we have seen the looming shadow, it can be too late to explain how and when we want to leave this world. Sometimes it’s too late to refuse treatment we would have spurned in our more lucid moments, especially if it holds no promise of lasting recovery.

Doctors can be uncertain guides. Hard-wired to wade in and save lives, they don’t always fully consider their patient’s future prospects. For them, the five-minute conversation about the next stage of on-going medical intervention is routine. By contrast, the conversation about how to best to call a halt to treatment which may well do little more than prolong suffering is usually long and difficult, and often extremely emotional.

Dying has become medicalised in recent decades. Two-thirds of patients who are dying in hospital are undergoing active treatment even as their bodies are shutting down. One in ten or eleven Australians will die in intensive care. In the US, it’s one in five. Although most people say they would prefer to die at home, few do.

Some doctors have recently made it very clear, in articles in various newspapers published around the world, that if they personally were hit with a bad diagnosis (like incurable cancers) they would eschew painful and debilitating treatments such as chemotherapy and sink gently toward a calm, nausea-free and peaceful end. A series of surveys in Europe, part of what is known as the Ethicus studies, have shown that a large majority of doctors and nurses would refuse painful life-prolonging but essentially useless treatment for themselves.

The Hippocratic oath doesn’t require doctors to save the lives of patients who have been “overmastered” by disease, and there is a new wave of doctors who are increasingly concerned about the way patients are over-treated towards the end of their lives. The days of keeping brain-dead patients alive for years on ventilators are just about over, but there are still difficult shoals and narrows to be negotiated. A couplet by the 19th century poet Arthur Clough is often quoted: “Thou shalt not kill; but needst not strive Officiously to keep alive:” Formal advance care plans are legally binding and one way people can take charge of their own departure, and avoid ultimately pointless medical care.

The main intensive care ward in John Hunter hospital in the NSW coastal city of Newcastle is both busy and frighteningly quiet. Talk is muted, but staff levels are high in intensive care wards – most beds in the ward have at least one doctor or nurse in constant attendance. Visitors sit quietly, and there is a tang of antiseptic in the air.

Many patients are heavily sedated and unconscious; surrounded by machines and tubes. These patients mostly can’t breathe, eat, move or toilet themselves. A frightening proportion will never fully recover their independence.

This is where an 86-year-old woman died after three complicated operations in rapid succession. She was admitted in February, vomiting blood. Her duodenum, the first section of the small intestine, had split. Severely demented, she also had end-stage heart failure, which essentially meant her heart was stuttering towards closing down completely. Despite her advanced age and her precarious health, she was scheduled for surgery to repair her duodenum. The first operation took three hours: a complicated attempt to “replumb” her. She was finally stitched up, her wounds were packed and she was sent to the intensive care ward.

She wasn’t in any shape to refuse more surgery, but an overwhelmed and elderly friend finally produced a signed and witnessed letter, a sort of personal advance care plan, written by the dying patient long before she was hospitalised. The letter declared she didn’t want to be kept alive if she had to be hooked up to life-support machines. But it was too late, and her wounds from the surgery needed urgent attention. She was operated on again, and, finally, a third time. She died six days later.

She was denied a gentle death because doctors were too busy treating her to think about not treating her. Her last days were a crescendo of surgery, blood transfusions and intensive care. “That was futility writ large,” says Dr Peter Saul, an intensive care specialist at the hospital and in the vanguard of those in the medical profession who believe it is time to rethink how we die. “We (intensive care specialists) ended up basically negotiating her dying. The surgeons didn’t want her to die. They’d spent three hours replumbing her.”

This kind of ultimately useless treatment is often known as “futile care”, and it flourishes in most Australian hospitals. Bob Cooper managed to avoid it, but he is one of the few who managed to step off the health-care escalator.

Professor Malcolm Fisher, who ran the intensive care wards in Sydney’s Royal North Shore hospital for many years, believes the phenomenon of medical escalation for obviously dying patients can be attributed partly to doctors’ apathy or nervousness. “It’s changing,” the specialist says, with irritation in his voice, “but it’s bloody slow.”

Striding along the hospital corridors, with his shock of white hair and his aura of genial authority, Fisher says that he has already told his wife and children how he wants to die, should it come to a point where he is incapable of making his wishes understood. “Most patients want the truth; they don’t want to die alone and they don’t want to die in pain,” he says flatly.

How much of the vast effort and cost of saving patients is wasted on futile care is a largely unresolved question. An interdisciplinary team led by academics from the Queensland University of Technology began investigating the scope of the problem this year, and they hope finally to come up with some reasonable figures on the cost of futile care. A team of six, including lawyers, a psychologist, an economist, and a professor of medical ethics, has been granted $260,000 funding by the Australian Research Council for a three-year study to gauge the extent of futile care in Australia.

The difficulties begin immediately: one doctor’s futile care is another’s last-ditch treatment; in fact there are many doctors, like Fisher and Saul, who reject the term ‘futile care’ altogether. What is futile, sceptics ask – treatment with a 1/200 chance of success, or 1/1000, or treatment which will not deliver a suitable quality of life – and who can say what is suitable and what isn’t?

Few doctors, though, will argue with the proposition that many patients in Australia get expensive medical treatment which will do them no lasting good, and which will be impossible to sustain across the nation when the population-bulging baby-boomers begin the descent into old-age and poor health.

“Generally, we as a society don’t do this well any more”, says Associate Professor Ben White, a legal academic from QUT who is on the research team. “We don’t talk about death. People aren’t having the conversation. We just keep treating; we just keep treating.”

White and his associate, Professor Lindy Willmott, have already done a lot of work on how Australians die, and they and their colleagues have devised a three-stage strategy to look at futile care, starting with a legal review, followed by in-depth interviews with doctors, and a chart review of patients who have recently died. Willmott can see looming troubles ahead unless the problems of futile care are fully addressed.

Her own grandmother, in her 90s and very obviously dying of pneumonia, was initially denied pain-relieving morphine by an officious nurse in her aged care home, for the extraordinary reason that it might kill the dying patient. A doctor soon remedied the shortage, and kept the elderly lady comfortable until she died shortly afterwards, but the drama made it clear to Willmott that medical guidelines for the dying need to improve. “Futile care,” she says, “can harm the patient, harm the health professional, harm the family and friends, and it’s at a cost”.

The financial cost, of course, is the burden on already overstretched hospitals. As a humane society, we don’t quibble about the cost of necessary health care; health care which is paving the way to recovery. But, by way of just one example, Saul expects the cost of the three operations and the stay in intensive care endured by the 86-year-old woman with the split duodenum “cost the best part of $100,000”.

Dr Bill Silvester is the director of the federal and state government-funded Respecting Patient Choices public health program and he is a passionate advocate for advance care plans. In 2004-05, Silvester ran a study in 17 aged-care homes in Melbourne. Doctors and nurses were trained to have the difficult conversation about dying with residents in the homes, many of whom appeared to regard discussing the subject entirely normal and contentedly drew up advance care plans. About 18 per cent of those who drew up plans died in hospital. By contrast, a much larger proportion of those who didn’t draw up plans died in hospital – about 48 per cent. Advance care planning, it seemed, had delivered measurable benefits.

“We looked at those who went to hospital, how many days they spent in hospital, how much it cost,” Silvester says. “We calculated the number of bed days, and we did the calculation with a clinical costing department, and we extrapolated the figures. There are 3,000 aged care facilities across Australia. We calculated advance care planning would save $250 to $300 million annually.” The emotional benefits were not so measurable financially, but it seems patients who managed to avoid last-minute aggressive care were less traumatised, as indeed were their relatives.

Silvester says the Respecting Patient Choices program has already helped thousands of people draw up advance care plans and adds that a national rollout of advance care planning in all aged-care homes has been recommended by both the National Health and Hospital Reform Committee and the Productivity Commission. “But, as with any good recommendations, the federal government is still looking at how it can be supported,” he says. Some politicians, particularly the ardent right-to-lifers, might vocally oppose the program, saying it is tantamount to euthanasia. Yet Silvester met with Opposition leader Tony Abbott, back when he was minister for health, and he says the usually socially conservative politician was “supportive”.

Advance care plans can be overruled by a conscious and mentally-competent patient, but otherwise they are legally binding, Silvester adds. Concerned relatives are asked to bear in mind the patient’s wishes, although naturally a second medical opinion is sought if there is any doubt, and there has yet to be a legal challenge to a formal advance care plan. Doctors have a common-law duty to “act in the patient’s best interests”, and sometimes that can mean simply allowing them to die in peace.

Bob Cooper’s relatives rushed to the Austin hospital on that autumn morning. None of them disputed the doctors’ decision to let him gently fade away. They were all there, all except one daughter who was living in Queensland and couldn’t get on a plane in time. To begin with he appeared unconscious, with drugs keeping him sedated and pain-free, but when his daughter rang on a mobile phone, and the phone was laid on his chest so he could hear her, he knew who she was. He said ‘it’s alright, it’s alright’, and patted the phone. A few minutes later he died.

The obituary his family posted in the Herald-Sun newspaper was simple and heartfelt. Keith (Bob) Cooper, it said, had “passed away peacefully”.