What Happened To Going Out In Style?
By Ella RubeliDecember 6, 2012
In a single generation the way we die has changed beyond recognition. Do we want to live longer if it just means more old age?
IT’S FRIDAY MORNING at Newcastle’s John Hunter Hospital and intensive-care doctor Peter Saul is on the phone to a surgeon, advising him how to deal with 87-year-old Charlie*, who is trying to kill himself. The overdose Charlie took yesterday didn’t work and now, after stabbing himself several times with a kitchen knife, he is in a critical condition. The surgeon is calling to ask Saul whether he should overrule Charlie’s wishes to die and try to sew him up.
“He doesn’t want to take any medication,” the surgeon says.
“He doesn’t want to have a blood transfusion… he doesn’t want to go into ICU [intensive care unit], he never wants to be ventilated…”
One after another, the surgeon’s heroics cards are trumped, and the thought of breaking the life-saving mantra drilled into him since his university days has him huffing into the phone.
Saul puts down the phone and tells The Global Mail, “This old guy is terrified that he’s going to end up in a nursing home — which he will — so he’s trying to kill himself rather than have that outcome."
Charlie also doesn’t want to end up in ICU, that section of the hospital that increasingly lives up to its nickname, “the departure lounge”. Spending your last days in ICU, as one in 10 Australians do, means dying in an unfamiliar bed at the flick of a switch, while tethered to a feeding tube, a dialysis catheter and a breathing machine — “machines that go ping” Saul calls them. Most of us don’t want to end up in this situation.
In today’s developed world, dropping dead, dying in your sleep or being defeated by an infectious disease is unusual. The healthier and longer we live, the longer it takes us to die. Dementia is the third leading cause of death in Australia, and it takes, on average, seven years for a person to die of it.
John Hunter Hospital provides care for the densely populated region of Newcastle and the Lower Hunter Valley, on Australia’s east coast — an area the geographical size of England. Half the deaths in the Lower Hunter occur within the walls of this hospital, Saul says.
He tilts his head behind him towards the maze of fluorescent-lit corridors that branch off towards acutely ill patients in curtained cubicles, all in a state of collapse, strung up to tubes like marionettes. It’s a scene repeated in every other large hospital in Australia. In fact, most hospitals in the developed world look like this. Increasingly, the beds are occupied by patients who have lived very long lives and whose bodies and minds are only slowly dwindling. Our extended life expectancy has brought with it a new condition that doctors, patients and families must cope with together. It is not a disease, but a combination of the symptoms of ageing and a variety of medical problems: frailty.
Saul emphasises that greater longevity just means more old age, not more youth. Before antibiotics, the ‘Father of Modern Medicine’, Sir William Osler, described pneumonia as ‘the old man’s friend’, because it allowed death to come quickly and helped the elderly avoid other illnesses that would cause a more painful or drawn-out demise.
In the past 100 years of medical progress in developed nations, doctors equipped with life-prolonging technologies have changed the very nature of how we die. Around the mid-1960s, it even became possible to die without ceasing to function. Machines were invented to replace the function of a failing heart, bones, lungs, liver, gut and kidneys, and intensive-care doctors were trained to perform miraculous, life-saving operations. Mortality rates dropped and death, because it now occurred mostly in hospitals, became a less significant part of our daily lives. According to Saul, at least six in 10 Australians will die of frailty.
IT IS THE END OF THE WEEK and, sitting in his austere office, Saul seems drained. With a career in intensive care spanning 30 years, he has seen a lot of death. Seven of his patients have died in the past 10 days, all of frailty.
Most intensive-care doctors of his generation, he says, went into the business for the challenge and reward involved in performing life-saving operations. Many are disillusioned by emergency calls to elderly patients who have only months to live anyway.
“We run there with gear, and we find this incredibly old person who’s incredibly frail and incredibly thin and, you know, 90-odd, and can’t breathe, and you go, 'Seriously?’” Saul says.
ICU wasn’t designed to prop up frail patients and facilitate dying, and its doctors and nurses haven’t been trained to deal with this ever more frequent situation.
“The stress created in families by dying is enormous.” Saul says. Having a family member hospitalised in ICU can cause symptoms of post-traumatic stress disorder in those closest to them.
When Saul asks families if they have talked to their loved ones about dying he is often met with a heavy silence, followed by distress. Families are ill-prepared and their decisions fogged by grief and fear; they frequently say, “We always thought there’d be more time.”
Families want everything possible to be done to extend the life of their elders, even if it’s just for a month. If their loved one is drifting in and out of consciousness, it is the family’s decision, made in consultation with the doctor, that determines what happens to them.
“Dying has become a private thing and a shameful thing and it’s not the public domain at all any more,” Saul says. “You no longer just die in your sleep, you die in a managed way.”
Saul estimates only 10 per cent of the Lower Hunter region’s elderly die at home, while 70 per cent of Australians die in acute care. “It’s reached a point that your home could be declared a crime scene if you die there now, it’s so rare,” he says. But in a recent survey conducted by Palliative Care Australia, 74 per cent of people who had thought about it said they would prefer to die in their home.
The survey also revealed that almost two in three Australians believe death and dying aren’t discussed enough in the community. But doctors and nurses are not inclined to broach the subject.
“Doctors will [discuss treatments] with you [when you have] a cough, or a broken leg, but when you’re 85 and can hardly breathe, for some reason they don’t feel self-confident enough to say, ‘What do you think is going to happen with your breathing?’” says Saul.
Australian palliative care and sociology academic Dr Allan Kellehear, currently based at Dalhousie University, Nova Scotia, has published several books on death and dying, including A Social History of Dying (2007). He agrees that society has some catching up to do with the medicalised way in which we are ending our lives.
“You can’t blame people for not rushing to understand how complicated intensive-care situations are, when the public information about intensive care is minimal to nothing.
“That does not mean we’re death deniers, it means we’re cautious,” he says.
“Current generations have been brought up with a good understanding of their own health,” he says. “We know basic anatomy … that smoking causes cancer, asbestos can kill you … we know the difference between if we eat pizza, fish and chips and KFC or fresh vegetables and salads.
“But we don’t have the death-and-dying equivalent.
“Let’s do the public education first; let’s get governments to encourage schools, universities and workplaces, to think about death and dying policy,” he says.
Saul agrees: “Most medical students never see anybody die at all.”
In an email a week later, Saul reflects on his suicidal patient Charlie. “This is modern dying,” Saul writes. “We are old and in poor health, and often do not want a lot of intervention. Then we encounter an inflexible system that is set up only to intervene aggressively.”
Because of his suicide attempts, Charlie was taken over by a psychiatry team, who spent five days and nights sitting by his bed to ensure he did not attempt to hurt himself. Eventually they decided he was completely sane. Because he had spoken with his wife about dying, she supported him in his wish to die and pushed the doctors to avoid surgery. Charlie went to a palliative-care hospice, where he was given drugs to help manage the pain he was experiencing, but nothing to prolong his life.
Saul says Charlie was lucky to encounter a surgeon who was prepared to listen, ask others for advice and be bold enough to take an unconventional route. Charlie was lucky to have a wife who stood by his wishes, however hard for her that was.
“He will die at much the same time, but better,” Saul writes.
*Not his real name.