There are worse fates than death - we should focus research on quality of life

We are all going to die. Hospitals are full of desperately sick and dying patients. Advanced age is the strongest predictor of death. These are three truisms that are often forgotten in debates about health care. At least six of the patients who died after admission to Camden and Campbell town hospitals were aged over 80. Several others had diseases that were likely to cause their deaths, sooner than later. Yet the assumption in all the outcry is that something is desperately wrong in all this. Careers have been ruined, and doubtless yet more of the health care budget will be unquestioningly poured into efforts apparently designed to stop often very old people dying. Is it time we took a fundamental look at the goals of the health-care system?

This year the head of the US National Cancer Institute, Andrew von Eschenbach, caught the spirit of George Bush’s all-conquering zeitgeist and challenged America to completely eliminate death from cancer by 2015. In Sweden, it is official policy that the road toll should strive to reach zero, not merely fall. Single-issue health organisations often talk about research that might one day eliminate diseases. The eradication of smallpox and the imminent departure of polio from the planet are self-evidently wonderful achievements, so why not go after everything else, the thinking goes.

Eschenbach’s go-for-gold gauntlet draws on millennia of death-defying rhetoric among healers and doctors, staged alongside countless replays of folkloric quests for fountains of youth and health’s holy grail of defeating death. But if no one died from cancer or was ever killed on the roads, what would take their place? What would we die from if not from any of the diseases that medicine now tries to cure and public health tries to prevent? And would this be progress?

Scratch the surface of the human genome project and assumptions about eternal life are not hard to find. In Daniel Callahan’s humane and masterly 1998 book False Hopes: Why America’s Quest for Perfect Health is a Recipe for Failure, he writes of the deeply ingrained “pathology of hope” and its beneficiaries in the pharmaceutical industry that together fuel exponential health-care expenditure in aging populations. In the next 40 years, the ratio of those aged 65+ to the working age group aged 15-65 will increase from 19% to 41%, dramatically increasing demands on the children of today to support the health care and other needs of their parents. The prevalence of Alzheimer’s disease in Australia is expected to reach 580,000 by 2050.

Callahan’s heretical proposal is that civil society should supplant medicine’s present open-ended goal of prolonging life at all costs with a radical re-focusing on quality of life and the compression of morbidity during a decent life span. He writes:

The average person in good health in the developed countries of the world … already lives long enough to accomplish most reasonable human ends. A medical policy that could assure those now being born that they could live as long – and only as long - and healthy lives as their parents should be perfectly acceptable.This ideal of steady-state life expectancy at its present level would establish, happily, a finite and attainable goal: Enough, already.

Average life expectancy in Australia has risen from 51 for men and 57 for women at the beginning of Federation to 76 and 82 respectively today. Australia’s non-indigenous population has the world’s seventh highest life expectancy. Increasing longevity in the past 30 years reflects success in preventing and treating heart disease, declining smoking caused disease in men and big reductions in injury.

Last month, a 52-year-old woman called me. Give the “smoking kills” line a rest, she urged. “I’ve smoked for 30 years. I have emphysema. I am virtually housebound. I get exhausted walking more than a few metres. I have urinary incontinence, and because I can’t move quickly to the toilet, I wet myself and smell. I can’t bear the embarrassment so I stay isolated at home. Smoking has ruined my life. You should start telling people about the living hell smoking causes while you’re still alive, not that it kills you.”

Death, and particularly early death, is typically privileged above suffering in the formulae used by health planners to set priorities. Health ministers boast about disease survival rates all going in the right direction, but spare little thought about how to reduce the burden of chronic disease in the living. A re-orientation that saw improvements in quality of life indices like chronic pain, immobility and depression as being as, if not more important than the slavish pursuit of prolonging lives, would see a major rechanneling of research and expenditure.