more_vert
FOR the past few years, I have been presenting graphs of the data from life tables (from 10 sources that I gathered for my book) that describe the dramatic changes in mortality of the past couple of hundred years. Thinking my ideas relatively novel, I have banged on here, there, and everywhere about the need to accept that life is finite and that there is no evidence that we are becoming able to significantly extend our maximum possible life expectancy beyond the barrier raised by our inexorable degeneration in old age. The consequence of that acceptance should be that we start to resile from futile and burdensome treatments so that more of us can die with grace and dignity (within the limits set by the nature of our life-ending illnesses, our choices and the skills of health workers).
A month or so ago, I discovered an article in the NEJM from 1980 that revealed that I had not invented the wheel after all. Fries made the prediction that the average life-expectancy would rise to a maximum of about 86 years as a consequence of disease prevention and treatment. And when people inexorably declined due to disease or ageing, they and their doctors would accept their death wisely. As Fries put it:
“… high-level medical technology applied at the end of a natural life span epitomises the absurd”.
However, while his first prediction remains unproven, as life-expectancy has not yet reached 86 years, we have a long way to go to escape the thrall of the theatre of the absurd.
So why have we not fulfilled Fries’ expectation that we would change our behaviour? It seems to me that he did not fully appreciate the power of evolved human nature, the dynamics of community, the inertia of health care culture and the lustre of money to shape our behaviour.
Firstly, we are driven by a strong intrinsic desire that we not die. This extends to our relatives and friends, with whom we form close bonds as an evolved mechanism for group success and genetic survival. I believe that life in general, and us as a species, would not be here had the will to keep on living not been a self-sustaining requirement for our evolutionary success and a consequence of the nature of evolution. Our wish to avoid loss, and its conjoined necessity for grieving, means that we can have difficulty accepting that we, or someone close to us, are actually dying. Nonetheless, dying is inevitable and for all of human history until the past century we lived our lives in close proximity with death and dealt with it. Suddenly, having unlearned the lessons of the past, at least in the developed world, we are ill-prepared for the unfamiliar.
The complexity of modern medical technology and the limited ability of some clinicians to communicate effectively mean that as patients we may not have a clear understanding of our illnesses, our options or the outcomes that we can realistically hope to achieve. This makes it hard for us to undertake the open contemplation and communication with our family required to make wise decisions and effective plans for a low-tech death. The sudden onset of an illness that requires rapid decisions can be very challenging, particularly for a relative who comes from far away and is not up to speed with the patient’s preferences.
Modern technology promotes such great promise of cure, or at least of death postponement, that we can find it hard to believe that there are no further interventions that might prolong our life. As clinicians, we often develop strong links between our sense of self-worth and the treatments that we provide and may be blind to those times when our skills become irrelevant. One colleague recently described how he received a number of offers of pointless intervention for a dying relative from clinicians who had difficulty seeing the disconnect between the treatments they were suggesting and the state of the patient.
Our culture encourages us to think that continuing to fight disease in pursuit of life-prolongation is virtuous and shows our strength. Refusal of treatment becomes a weakness akin to surrender. How often do we see an obituary that describes the dead person as having waged a long (or short) battle with cancer?
Overtly or otherwise, health care providers generally promote the treatments for which they are trained. Such attitudes may not consider the various burdens of disease, factor in the likelihood of benefit, or recognise the extent to which the pursuit of therapy may lead a patient with a limited life-expectancy to sacrifice any hope of achieving important personal goals. The personal acceptance of death may be interpreted as a failing rather than understood as a state of peace born from inner strength.
Lots of money can be made from administering treatment to people and not much from caring for them while they are dying. The developers and marketers of medical technologies engage in highly sophisticated advertising (that manipulates culture) to encourage the expectation of treatment as the default response to disease at any age. Clinicians commonly deny that their behaviour is influenced by such promotion. A colleague in the US was appalled to see a doctor arrive to set up dialysis on a patient who was about to die. It seemed that the primary business of that doctor and his hospital was to provide technical treatment, not to care for the whole person.
It is not easy to understand that the culture of our community is the sum of all our beliefs and behaviours. We struggle against the weight of our nature and our nurture to incorporate a logical change. Whatever the stunning gains of modern medicine, we must relearn the fact that there comes a time for every single one of us that further efforts at life prolongation cannot deliver any benefit in terms of the quality of our experience of the remainder of our life.
Perhaps Fries’ error was to be too optimistic about our ability to behave rationally. Alternatively, his article might be analogous to Malthus’ predictions in 1798 about the limits to the growth of population in a finite world; not incorrect in his predictions, but underestimating human ingenuity and just a couple of hundred years out in terms of the timing. The growing awareness of the benefits of advance care planning and whole person care in helping us to deal with the reality of inevitable death may well be signs that Fries’ predictions are becoming realised, although not quite as simply as he had predicted.
One component of good medical care is to work with our patients as they deal with the challenge of deciding when the time has come to stop struggling to stay alive, and then to support them while they are dying. Cultural change will follow.
Associate Professor Will Cairns is a palliative medicine specialist based in Townsville and author of the eBook Death Rules – how death shapes life on earth, and what it means for us.
To find a doctor, or a job, to use GP Desktop and Doctors Health, book and track your CPD, and buy textbooks and guidelines, visit doctorportal.
I have now over 40 years of Medicine behind me and clearly less than that before me.
My clear recollection remains: whenever the wise doctor has answered the question: “How long Doctor?” and the doctor replied “Three months”, then Death indeed came… but for for the doctor..
The Divine’s infinite (but clearly Jewish) sense of humour.
I agree with you Simon. End of life planning and care options are too frequently either ignored or, worse, plans made with a cogent patient are fiercely over-ridden by family members or even clinicians not previously involved in the patient’s care continuum! Seems even with good care planning, this issue of patient preference remains a stumbling block to many efforts at allowing patient choice to have precedence. It seems that acceptance of the Living Will concept is a good way off, and it’s absence will continue to limit our potential to provide what patients want.
Will you are a sagacious commentator but as someone closely involved with end-of-life planning it astonishes me how frequently I am wrong about exactly when the event will occur. Is it this admission or in 6 months or perhaps a year? Even when all the lights are red in say end stage COPD, people often rally and get out the door and have another few months. Perhaps it is more difficult in non malignant disease where there can be a more roller coaster progress.
The key thing of course is to have open discussion with the person concerned (and family) and decide (in the daylight hours) what a sensible ceiling of care should be.
Im glad we don’t practice in the environment you describe in Nth America
I agree with much of sentiment. It is very sensible. The discussion has a significant and relevant philosophical and medical basis, i.e. death is inevitable, maximum life expectancy has a limit and we need to adjust our clinical approach to correspond with this fact of life .
Where I disagree is the naturalistic perspective with an evolutionary narrative. There is a better and more plausible account for why people naturally wish to avoid dying and why we exist at all. The fear of dying has more to do with missing out on what life has to offer and the perceived finality of annihilation at death. There’s so much that we do as individuals has much to do about making life meaningful or leaving behind a legacy or reminder that we were once here, alive in the flesh. Solomon in the book of Ecclesiastes remarked that God has put eternity in the hearts of each individual. There is a lack of an eternal perspective in the lives of most Australians because it is dominated by an evolutionary narrative where there is ultimately lack of objective meaning and purpose to life – hence, our activities are consequent to the desire to hang on to dear life when we can (sometimes at all cost) and when it seems hopeless, a desire to end it on our terms because that is all we seem to have precious control of. A better meta-narrative would be more helpful.
“The only certainties in life are death and taxes”. Twas ever thus. Humans continue to seek to avoid both.