The banal but terrifying truth is that we are all destined to die. Though death is unchanging, the way we will die is different now from at any time in history. Unrecognisably so. In the past 50 years we have invented life preserving and prolonging technologies that have contributed to more of us surviving to be the “old old”, once the province of the few. But for many, great age brings frailty, the accumulation of years of minor injuries and insults combining to limit our lives both in duration and scope.
And then we get pneumonia.
For the first time ever, and with little preparation, our doctors and families are forced to make a choice: the life support machine or simple care on the ward (or at home).
It is not just our families who are ill prepared – the doctors and nurses who work in intensive care are trained as lifesavers. All the new life-prolonging technologies were greeted as medical breakthroughs. Lungs don’t work? We have the answer. Kidneys? Heart? We can substitute for, or even replace all those. But by the early 1990s it had become clear that life may not be prolonged at all, or only to a degree that wasn’t worth the suffering. The notion of medical futility was born.
For a decade we struggled to define futility, then we gave up. It became clear that everybody had a different idea of what was futile. Sometimes the family would insist that “everything possible” should be done, long after the doctors had concluded that there would be no benefit. Just as often the doctors (usually specialists in their own organ system with little knowledge of the patient as a whole person) would insist that technology could still prevail. The default setting became “do everything possible then we will attract the least criticism regardless of outcome”.
Quite rightly, this default is being questioned. The inappropriate or unwanted use of intensive care technology at the end of life is not just ethically futile, but harmful and plain wrong. So we have to revive futility, and in doing so provide the community and our doctors with some transparent rules and guidelines about using this dangerous term. The first rule is to treat everybody as an individual: just because you are 90 doesn’t mean you should not go to the ICU. There is no recipe here. The second rule is that the medical team treating you needs to agree about what is medically the best option – there’s no point approaching a family when the doctors are at loggerheads. Third is recognising that it is ultimately the patient’s decision, or, failing that, their family’s, about how to die. There is almost no legislation about end of life in NSW, but the role of the patient and family is clearly spelled out. Which means there has to be a meeting, sometimes a long one. Finally there has to be an option to appeal – for more time, more opinions or even to go to court.
But most important we need to engage the medical and broader community in a genuine conversation about managing end of life and the process of dying. “Death cafes” have sprung up all over the world, where people gather and chat about their hopes and fears, no doubt with much laughter. And next month the joint meeting of the Colleges of Surgeons and Anaesthetists of Australasia will host a death caf of its own – the first time that this has happened, and surely a sign that the medical community wants to learn and grow.
At its heart, the debate is not just about wasting money, though there is no doubt that futile treatment at the end of life is horrifyingly expensive. The real question is: “How do we want to be treated?” The only default answer is “humanely”.
Peter Saul is a senior specialist in intensive care at Newcastle's John Hunter Hospital and Director of Intensive Care at Newcastle Private Hospital.