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OVER the past few years I have been a part of the development of Queensland’s Statewide strategy for end-of-life care.
The strategy emerged from a bipartisan parliamentary committee that found, as have other states, a significant need to improve the care of people at the end of their life in our communities. The then Liberal National Party government initiated the development of the strategy and this has continued seamlessly under its successor Labor government.
When we started, it seemed so straightforward; just improve palliative care resources generally and encourage the recognition of dying patients to ensure that they receive such services.
What became apparent to me, as we worked through the details, is that the drive to improve care at the end of life is more a cultural challenge for the whole community than simply an issue of improving health service access.
Recently, as I was pondering the challenges facing our strategy, I realised that I needed to explain how the successes of modern science are driving an evolution of the goals of medicine.
With little further gain possible in stopping death in the first 60 years of life (most of us don’t die before 60 anymore), the bulk of the gains in life expectancy is now brought about by delaying or prolonging dying in the elderly, and it is becoming more and more difficult to achieve further gains in healthy life expectancy.
In the developed world, we are in a transition to a third phase of dealing with death. However, our culture has yet to catch up.
The first phase lasted from the beginnings of life until about 200 years ago. Like many other animals, about 30% of humans died before reaching adulthood and little could be done to forestall death at any age. If you fell sick, either you got better or you died.
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The second phase – the period since the beginning of the industrial revolution – has been characterised by significant improvements in both the quality and quantity of the lives of most people in the developed world. Clean water, sewerage systems, better nutrition, housing and vaccination have virtually eliminated childhood mortality and dramatically reduced mortality in middle age. Over the past century, science has enabled us to hold at bay for many years most of the consequences of illness.
However, we can’t make anyone live forever.
We can easily identify those very few of us who achieve the maximum life expectancy of between 115 and 120 years. However, it is very difficult to figure out the maximum for the rest of us, for whom I suspect lies somewhere between 70 and 95 years. Most of us now live long enough to run headlong into the wall of our individual maximum and die from the diseases of our degeneration in old age.
Although there is a lot of talk about treatments that might make us live on and on, I wonder how long the trials to prove their safety and efficacy would take! But I digress.
Our biological and cultural evolution has us desirous of avoiding death at almost any cost – both our own deaths and those of the people we love – and this is reflected in the historical values and goals of our health care systems.
This culture has meant that we often approach the consequences of ageing, and indeed fatal diseases at any age, under a paradigm that manages them as though they were fixable. However, there is a growing sense of doubt and unease about our treatment of people with far-advanced diseases and how we might deal with large numbers of frail elderly people.
The Queensland strategy is part of a worldwide consideration of the next step in our relationship with death.
The third phase will be a state in which, while retaining the benefits of modern technology, we accept that dying is the natural and expected end to every life. This will be integrated into the design of our health care services and the ways in which we make decisions. While often it will not be easy, this will become our culture and will reflect a new state of equilibrium with the inevitability of death.
Although I have no expectation of any diminution of the sadness of loss, the reward for making this transition will be that much greater numbers of those patients who, experiencing tranquility in their death as the accepted consequence of having lived, bring peace to their families and friends, and to their doctors. More of us will be able to be rolled out onto our veranda to die while watching the sun rise, as one of our patients did recently.
However, many doctors may need to expand their skills if they are to support wisdom in decision making with those patients who are approaching the end of their life.
Dr Will Cairns is a specialist in palliative medicine and author of the eBook Death rules: how death shapes life on Earth, and what it means for us
Will is quite right of course. The problem as I see it is with ‘we’ – in the comment ‘ we accept that dying is the natural and expected end to life’. This ‘we’ first and foremost needs to be our colleagues many of whom seem to regard a patient’s death as some sort of failure on their part. The foremost need is to get palliative care ‘mainstreamed’ into medical practice and then the public – at least those actually impacted by their own death or that of someone near to them – can be worked on too.
The question is – how do we mainstram ourselves? How do we get PC integrated into facet of practice?
The question is when that end is to an individual. Interpretation of quality of life can be very different for different people, it can be very different for an individual at different stages of life.