Blink and you’d miss it. That’s the fate of stories in the lead-up to Christmas, even explosive ones about the questionable withdrawal of life-sustaining treatment from unconscious patients like Paulo Melo.
But we need to remember twenty-nine year old Paulo, critically injured in a car accident in Kakadu National Park on December 5th. Just under two weeks later, his family were in court, resisting the hospital’s decision to discontinue life support. They failed, and on December 19th Paulo’s treatment was withdrawn. He died around 16 hours later.
Disputes between doctors and families about the advisability of continuing treatment in such circumstances are rare. Families that reject medical advice tend to be either deeply religious, struggling to come to grips emotionally with the tragedy they face, or convinced they’ve witnessed signs of recovery that doctors – having already handed down their prognosis – refuse to countenance.
The Melos, who had a Priest by their son’s bed in his final hours, who begged the hospital to let Paulo survive until after Christmas or New Year and then “we can see,” and who insisted to the end that Paulo was showing signs of recovery, could fairly be described as all three. There is little doubt their determination to preserve Paulo’s life exasperated the medical team at the Royal Darwin Hospital. “We have tried in every way to prepare this family for the withdrawal of the mechanical ventilation,” Dr Diane Stevens was quoted at the final hearing as saying. “We have already…given [them] more than a week to understand that he is not going to survive this terrible accident and injuries”.
For Dr Stevens, the medical prognosis was clear, and justified the Hospital’s decision to withdraw treatment from Paulo. “[The medical team] felt strongly that we could not continue the mechanical ventilation as it was futile therapy,” she told the court in a sworn statement. “We feel strongly it is not ethical to continue with futile therapy”.
Justice Mildren of the Supreme Court of the Northern Territory appeared convinced, citing the futility of further treatment as one of the grounds for denying a continuation of the orders restraining the hospital from withdrawing Paulo’s life support. “The difficulty here is that the only evidence before me suggests that continuing with the current treatment of this patient is futile…There is no evidence to the contrary”.
Everyone, doctors most of all, know there comes a point when patients are overmastered by their disease and medicine is powerless to intervene. The problem has been defining this point with the precision, accuracy and ethical cogency required to guide clinical behaviour.
Is treatment one with a 1% chance of success “futile”, or does one with a 10% chance qualify? And how, and by whom, should such vital probabilities be calculated? Research warns doctors against relying on their experience, which is biased towards recollection of cases that went wrong, but robust and reliable data is often lacking. Even where it exists, its relevance to particular cases is not always clear. And doctors can be wrong. In 2000 the courts had to twice restrain those at Sydney’s Royal Prince Alfred Hospital from withdrawing “futile” treatment from a comatose 37 year old man whose sister, keeping vigil at the bedside, insisted was improving. The man eventually recovered.
Perhaps most critically, medical futility does not provide a values-free tool by which medicos – and courts – can make objective decisions about withdrawing treatment. Instead, it but a mechanism by which medical values are allowed to trump those held by non-compliant families of critically ill patients. In a recent edition of the British Medical Journal, Charles Weijer and Carol Elliott explain how clashes between doctors and families over withdrawing treatment are “not about the probability that an intervention will work but about the goals that it will serve”. For some families, human life – even unconscious life – is of greater value than considerations of that life’s quality. In this context, the medical ethicists argue, describing as “futile” treatments that preserve what may be permanently unconscious life is “suspiciously like trying to redefine a debate about conflicting values into a debate about medical probabilities. And as doctors are generally the sole arbiters of medical probability this amounts to saying to families, `Your values don’t count’”.
Luckily, there is a better way.
Since the late 1990s, a bevy of experts have been arguing that our inability to define futility objectively requires us to focus on developing a fair process for reaching decisions about withdrawing treatment. The American Medical Association, for instance, advocates that every institution develop and adhere to such a policy, which should include joint decision-making, negotiated resolution of disagreements and, if when all else fails, opportunities for families to transfer care of their loved one to another doctor. Only when no doctor or hospital will accept the patient, may treatment be withdrawn.
The aim of such a policy is not to resolve the values conflict at the heart of disagreements about withdrawing treatments, but to ensure the power to decide is distributed fairly between the doctors who deal with these situations everyday, and shocked and grieving families forced to confront it for the first time.
The Futility of Treatment: Who Decides? Sun-Herald (Sydney)
The Futility of Treatment: Who Decides? The Age