1
Originally published as Chapman, Simon (2005). Never say die? Medical Journal of Australia 193: 622–3.
For many years I gave a lecture on the first day of my school’s Master of Public Health degree. I started by asking every student who was never going to die to raise their hand. We can’t prevent death but we can do much to prevent early death and to make the years in which we live as disability-free as possible. We can add years to life, and life to years. I wrote this piece after receiving a phone call which inspired me to set down some thoughts about some of the core goals of public health.
An articulate 52-year-old woman recently telephoned 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 just that it kills you.”
The call crystallised for me some diffuse unease I have long felt about some under-examined fundamentals in the entire public health enterprise. Here is how I see it.
We are all going to die. Advanced age is easily the strongest predictor of death. Nearly half of all deaths in Australia occur in a hospital.1 These three truisms have acquired profane, almost unutterable status in contemporary healthcare debate. Each is banal in isolation, and they remain banished from polite discussion as indecent reminders of the pathos of the human dust-to-dust destiny, occasionally insisting to be heard amid the unbridled optimism of the scientific legacy. Huge energy is invested in avoiding their mention. Perhaps the most unabashed manifestation of this denial is the spamming American Academy of Anti-Aging Medicine, which boasts 11,500 members in 65 nations2 and unblinkingly speculates about the virtues of people living to the age of 120 and possibly as long as 170.3
The decadence of such a first-world cosseted vision, in times when more than a billion people live on less than $1 a day and another 1–1.5 billion live on $1–$2 a day,4 37.8 million mostly young people are infected with HIV,5 and 1 million people still die of malaria each year, would be remarkable were it not for the values it shares with mainstream health politics and the media-fuelled public expectations that sustain it. Today, anyone bold enough to suggest pausing to question the unrequited battle and conquest metaphors that dominate the politics of health risks being branded a medical heretic or even an apologist for involuntary euthanasia of the aged.
The dominant medical motto for our age might well be “Never say die”. Recently, following on from Richard Nixon’s declaration of war on cancer in 1971, the current head of the United States National Cancer Institute, Andrew von Eschenbach, caught the spirit of George Bush Junior’s all-conquering zeitgeist, and challenged America to “eliminate suffering and death from cancer” by 2015.6 In Sweden, it is government policy to strive for a road toll of zero, not merely to have it fall.7 If you scratch the surface of the human genome project, unstated assumptions about eternal life are not hard to find in the pitch to the often elderly biotech investors.
Single-issue health organisations often talk of research that might one day eliminate their diseases. The recent announcement of an imminent vaccine for cervical cancer8 is self-evidently a wonderful thing. Here is a near-to-fully translated research advance that promises to end the collected misery, pain and indignity that millions of women would otherwise suffer over the years. The eradication of smallpox and the predicted departure of wild polio from the planet are astonishing achievements. So why not conquer everything else? In wealthy nations today, there are few causes of death that cannot boast a non-government agency and a research focus dedicated to eradicating the offending disease. Health agencies’ mission statements are purged of anything that even hints that a point might be reached when an organisation might be content with a certain incidence of deaths from their cause. Defeat is anathema to medical progress when it comes to death.
Plainly, there is much to admire in all this. If the go-for-gold death eradication scenarios played out for each preventable cause, a huge number of young and middle-aged lives would be saved. But if no one died from cancer, was ever killed on the roads, or died from any given cause now subject to ever-onward mortality reduction targets, what would take their place? If the death toll from late-age cancer plummeted, if heart disease became something permanently able to be postponed, would this be progress? Which causes of death would increase when others declined? What would we die from?
Isolated from the wider “If not death from X, then what?” question, advances against deaths from particular diseases may be pyrrhic victories if all it means is that cause-of-death deckchairs are being shuffled on life’s Titanic, only to sink around the same time.
In at least six of the cases investigated in which patients died after being admitted to Sydney’s Camden and Campbelltown hospitals in 2001, the patients were aged over 80. Several others had serious diseases likely to cause their deaths, sooner rather than later.9 Yet an unexamined assumption in much of the outcry was that something was inherently wrong in very old or very sick people dying in hospital this month rather than in the next six.10
The discourses of shameful government neglect, of un-Australian inequitable health service provision in low socio-economic areas, have steamrollered the now endangered discourse of the innate decency of the “good innings”. The “rule of rescue”11 – the imperative people feel to rescue identifiable individuals facing avoidable death – similarly permeates health policy and resource allocation. Tucked deep away in the Productivity Commission’s 2005 report on the economic implications of an ageing Australia12 are examples of a very different kind from today’s never-say-die epic, hinting at a lament among experienced doctors for times when if:
pneumonia, the old man’s friend, came to visit, that was regarded as quite a good outcome. That is not acceptable to the community anymore. There is a great tendency to do significant interventions in the very old . . . older people are able to undergo operations and procedures that previously were denied to them. For example, 10 years ago, 75-year-old people often were not dialysised if they had chronic renal failure, but this would be a common occurrence now.13
While there are ideological imperatives stoking apocalyptic visions of unsustainable ageing populations,14 it is true that the elderly consume hugely disproportionate healthcare resources, particularly in the last years of life, when up to 40 percent of health care expenditure can occur.15 If the healthcare costs for 25- to 29-year-olds are indexed at 100, those expended on 65- to 69-year-olds are 387.6, and those on 85- to 89-year-olds 614.2. Moreover, hospital separations in those aged 65 and over grew from 26 percent to 33 percent between 1991 and 2001, with the growth being only minimally explained by the growing number of aged people in the population.16
The director of the US Hastings Center, Daniel Callahan, has written of the deeply ingrained “pathology of hope” and its beneficiaries in the pharmaceutical, diagnostic and medical industries.17 Together, these fuel exponential healthcare expenditure in ageing populations. 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 refocusing 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 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 78 and 83, respectively, today.18Australia’s non-Indigenous population has the world’s fourth highest life expectancy after Japan, France and Switzerland. As a nation, we are near to being the healthiest in the world, with the exception of the national shame of the poor health status of our Indigenous population. Increasing longevity in the last 30 years reflects success in many areas, but particularly in preventing and treating heart disease, declining disease caused by reduced smoking in men, and big reductions in motor vehicle and child-injury deaths.
These and other major preventable causes of death kill Australians early, often well before their retirement, still causing tens of thousands of person-years of life lost (PYLL) before age 75. Indeed, the PYLL concept enshrines the idea that years of life lost after 75 do not “count”, and do not enter into national calculations of the national state of health.
A hallmark of a civilised society is valuing life at all stages, and not simply when its citizens are in the peak of their economically productive powers. The revulsion that many expressed at news of the study sponsored by Philip Morris (which advised the Czech government that early deaths of smokers each saved the country $1,227 on healthcare, pensions and housing19) is an index of these values. However, the corollary is not to hold the door of life open unquestioningly and indefinitely, regardless of the quality of such life or the costs of doing so.
A recent systematic review of the rate of functional decline in older people in the US has shown a significant reduction in this decline in the past three decades, suggesting some success in compressing morbidity (i.e., delaying the onset of illness) through both disease prevention and medical care.20 However, the demographic wave of people entering old age will mean that the number of people who are disabled, dependent and living with reduced functionality through multiple chronic conditions will grow to be larger than ever before.21 With this trend compounded by the rapidly growing obesity epidemic,22 we seem likely to see an unprecedented prevalence of disability in ways that may not have been anticipated in previous modelling. The number of people with Alzheimer’s disease in Australia (presently around 200,000) is expected to reach 580,000 by 2050.23
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 relatively little thought about how to reduce the burden of chronic disability in the living. A reorientation that saw improvements in quality-of-life indices like chronic pain, immobility, isolation, sensory impairment and depression as being just as, if not more, important than the slavish pursuit of prolonging lives, would see a major rechannelling of research and expenditure. National audits of the morbidity arising from such quality-of-life-eroding variables deserve more attention and public policy discussion.
The medical specialties that would benefit from such a reorientation would include pain management, public health efforts dedicated to keeping people physically and mentally active, and efforts to improve the much-discussed Bhutanese-inspired concept of “gross national happiness”.24 More importantly, considerations of such qualities of life would force the health and medical enterprise to engage more with other sectors, like financial and residential planning and ergonomic design, to facilitate greater independence for the aged, rather than focusing so much on simply keeping people alive in old age. And we need to embrace “Enough already”.
1 Australian Institute of Health and Welfare 2004.
2 American Academy of Anti-Aging Medicine nd.
3 American Academy of Anti-Aging Medicine 2002.
4 United Nations Development Program 2005.
5 UNAIDS 2004.
6 Manley 2014.
7 Elvik 1999.
8 Khamsi 2005.
9 Health Care Complaints Commission (NSW) 2003, Table 5.1, 47–54.
10 Bradley 2004.
11 McKie and Richardson 2003.
12 Productivity Commission 2005.
13 Productivity Commission 2005.
14 Coory 2004.
15 Van Weel and Michels 1997.
16 Productivity Commission 2005.
17 Callahan 1998.
18 Australian Institute of Health and Welfare 2016.
19 Fairclough 2001b.
20 Mor 2005.
21 Rosen and Haglund 2005.
22 Thorburn A.W 2005.
23 Access Economics 2003.
24 Revkin 2005.