Is death optional?

My mother's lung cancer, unexpected because she wasn't a smoker, caused her a difficult and painful death after years of mild dementia.

She didn't believe in euthanasia and died recently in a Sydney nursing home, aged 86. In the end her dementia wasn't her biggest problem, as she was no longer aware enough to care about it. Rather it was the so-called co-morbidities which crippled her and left her in chronic pain, giving my mother, Nette, a miserable last five years of life and leaving me doubting the wisdom of the quadruple bypass she'd had 10 years before.

Her death contrasted sharply with that of a family friend who died a few years before Mum had her heart surgery. Nin made a hot chocolate for herself and her student boarder before she went to bed one night, aged 84, and didn't wake up. She died of a massive heart attack that took her so quickly, her doctors said she wouldn't have known what happened.

Mum seemed to have drawn the short straw. Nin seemed to be the lucky one.

Photo Courtesy of Margaret Rice

Jeanette Rice with her first child.

In Australia we've pushed death back. Of those Australians who make it to 65, the men can expect to live to 84 and the women to 87. The numbers of those who live beyond these ages are set to increase dramatically as the century progresses, reversing us from a country of young to a country of old people.

But many of these survivors will struggle with a range of the uglier diseases of old age, which will leave either them or their families scratching their heads about what they really gained with all those extra years of living.

Australian Medical Association president Dr Steve Hambleton says most old people would rather have a few extra years of good eyesight and continued agility than too many extra years. Yet we don't yet have a society that encourages elderly people and their families to examine these issues realistically.

"In fact, 'It's OK to opt out,' is not something people hear very often," Dr Hambleton says.

Instead, they're left with the impression that because certain interventions can be done they must have them.

"It's something people need to know, that they have permission to say no," he says.

Heart interventions are the best example of the dilemma. Today many people in their late 60s and 70s are likely to be given percutaneous procedures to clear blockages in their coronary arteries to gain at least an extra 10 years. These are the modern, less invasive equivalent of the coronary artery surgery my mother and her peers were having 10 years ago.

The latest data show that in the period 2009-2010 in Australia, a staggering 23,600 of these percutaneous procedures were performed and a further 5,400 of the more old-fashioned coronary artery grafts.

Percutaneous procedures, along with a 67 per cent drop in the smoking rate since the 1970s, have caused Australia's deaths from cardiac, or heart, disease to drop from 20 per cent in 2000 down to 16 per cent in 2009. You'd think that is a significant and positive achievement for modern medicine. But some don't agree.

The drop in cardiac disease has unmasked other complex and confronting illnesses, most conspicuous amongst them dementia and stroke.

Mum's was a typical suburban Sydney nursing home, with 63 residents. It housed a number of elderly residents, over the age of 80, suffering from dementia. They would sit with Mum in the common room, passive and immobile, some gently rocking in their restraining devices while staring vacantly ahead. Apart from this group, there were another 25 in a separate, locked dementia wing.

There were also those patients who were bed-ridden, often because of their vascular disease, such as the 90-year-old woman who lay in a bed just in view of the nurses' station, in a vegetative state, the consequence of a stroke more than eight years before.

The fundamental realities about life for many aged Australians today, according to a number of medical experts and health economists who spoke to The Global Mail, are not always pretty.

The experts say there are not enough medical data provided so that the elderly and their families can assess realistically, and on a case by case basis, the other diseases which may well catch up with them after they've had their "life-saving" cardiac intervention.

The trouble is, little is understood about the right to say "no" to intervention, and it becomes confused with a discussion about euthanasia, which is something else again: the right to deliberately intervene to cut life short.

And it is still difficult to predict who will languish after cardiac interventions. Personalised genetic mapping to predict the major diseases that could emerge after heart surgery might solve this problem, but such mapping is only just being developed - and when it becomes available, for many years to come only a tiny minority will be able to afford it.

West Australian cardiologist and general physician David Playford believes we need more geriatricians working with cardiologists to help make better judgments about elderly candidates for cardiac interventions.

Photo Courtesy of Margaret Rice

Jeanette Rice on the day of her engagement.

Health economist professor Stephen Leeder, director of the Menzies Centre for Health Policy at Sydney University, believes it's not appropriate for cardiac surgeons to be expected to carry the full burden of ensuring individuals are informed about these complex issues.

"But it certainly is somebody's job, and the information is of incredible importance to the consumer," Leeder says.

"At the moment the data is not there, at least in Australia, because we don't have linked-up medical records that would enable us to ask a perfectly simple question, which is: out of 300 males aged 78 who've had this procedure over the past four or five years, what's the outcome? We don't have that information at our fingertips, which is just absurd," he says.

He hopes this will change when new, federal government-funded, personally controlled, electronic records become commonplace; at that point large volumes of information about large populations can be anonymously collected for exactly this type of decision-making. Such a records system is being trialled now at a range of hospitals throughout Australia.

In the past, civil libertarians have been concerned over the privacy of such records because massive amounts of sensitive information about individuals, including psychiatric details, can be passed quickly from one health professional to another using them. But Leeder says concerns about this are being resolved.

"We do need information about what's happening to people in nursing homes and what's happening five, 10, 15, 20 years down the track. I mean, if I was 78 and facing cardiac surgery I would at least like to be afforded the dignity of being given the information and having it on the table so I can make the call," he says.

It is possible to do, he says. Large health maintenance organisations (HMOs) in North America do it very well, he notes, citing Kaiser Permanente as an example. "It's a health maintenance organisation with about six million enrolees, which is fully computerised. And the consumer, the patient, can gain access to information about large numbers of patients at a time," Leeder says.

"For example, if people are going to consider having bypass surgery, they can look at the experience of 500 people which is pooled and see what the average life expectancy is and whether, for example, 15 per cent of those who've had the operation will be dead within a year."

Dr Hambleton agrees there is not enough data being collected for older Australian consumers to make effective decisions. "Australians should be asking, Is every procedure possible a good decision, in terms of ultimate outcome?" he says. "When does natural dying start and when does medical intervention start? We have to really think about these things and it's a really difficult decision for the whole of society."

Australians need to write more of what are called advance health-care directives, he suggests. These need to give clear instructions; they become more important as people age, he says. These directives are a form of living will, recognised by health-care professionals. They can be written before an elderly person enters hospital.

Managed by area-health services, these directives allow people to request, for example, that no treatment be started which might obstruct natural dying, or that no surgical operation be performed unless for palliative purposes. But the current approach is fragmented, with different forms and approaches in each state.

When evaluating a medical procedure's worth, the question of cost can come into play, even if only to consider using price as a mechanism to lock people out of expensive surgery. It would be easy, although politically risky, for governments to reduce the rebates for percutaneous surgery as a way of inhibiting its use. It's a strategy which would impact heavily on the elderly, yet a strategy some academics in America have promoted.

The idea makes Public Health Association of Australiachief executive Michael Moore bristle. He warns it's not viable to use price to curb this surgery in Australia. "The association's position would be ensuring interventions to improve cardiovascular health are available right across the community, not just for privileged groups," Moore says. "Australia is based on equity and a fair go."

Institute of Health Economics and Technology Assessment director Dr Paul Gross says the question of when to medically intervene in elderly people's lives, and when not to, should be discussed a lot more in Australia. "We also need to ask what the medical profession is doing about clearing up uncertainty around the effectiveness of certain surgeries. This problem would be solved by building better information on the evidence-based guidelines developed by clinicians themselves through their Royal Colleges," Gross says.

Photo Courtesy of Margaret Rice

Jeanette worked as a midwife.

"The medical profession does not seem to want to give leadership on developing guidelines that might help families and patients at the end of life, and the reasons are simple," he says. Some people will want heroic interventions and surgeries. There always will be some people who respond to cures that most other people wouldn't. Even these small success rates undermine guidelines, Gross says.

Hence we have 97-year-old patients who are having bypass surgery "with case mortality rates of between two and three per cent, which is amazing," he says. "If you let the economic perspective decide what happens to individuals, we are a society without a soul.

"But resources are limited, and ultimately somebody has to make the decision about whether I live or die, so I want the best possible information in place for my family, for me and for my doctors," he says. "We need to educate families about dying and death."

Alzheimer's Australia is squaring up to lobby for funds for dementia research as the problem gets bigger this century. Alzheimer's Australia's chief executive Glenn Rees predicts a dramatic increase in dementia numbers in the next 10 years and he believes broader issues about quality of life in extreme old age need to be addressed by government.

"We're being successful in giving people longer lives," Rees says. "And because there are more people living longer, dementia is becoming more visible as a serious health issue. In the next 10 years the numbers of people with dementia will increase by 50 per cent, to about 350,000, or over. So there's a big explosion in numbers. By 2020, 75,000 baby boomers will have dementia, so it's today's issue as well as tomorrow's problem."

"For the last 50 years health policy has focussed on saving lives and gaining extra years of life," he says. "But the issue now is how to ensure those extra years of life are quality years."

In a nursing home across town from my mother's, 95-year-old Betty talked about these issues. She said she is ready to die.

I asked her if she suddenly developed a heart condition that could be treated with surgery, would she take it?

"Not if it gave me another 10 years," she said.

Then she paused for a moment.

"But if there was a choice between that and dying tomorrow, I'd take life," she said.