Ducking life-and-death decisions
In supporting living wills, are doctors offloading responsibility for guiding patients and their families through tough choices?
Following the sad death of Terri Schiavo on 31 March, many commentators pointed out that if only Terri had let her family know what she wanted, things would have been so much easier. In the Guardian, Helen Pidd wrote: ‘There is a way to avoid the sort of dilemma highlighted by the Terri Schiavo case…make your own wishes clear in a “living will”.’
Many doctors are also keen on the idea of living wills, or advance directives. This is perhaps because living wills take some of the responsibility for difficult decisions out of medical hands: if all patients wrote down their wishes when still hale and hearty, there would be no need to worry about what to do when they went into a coma, or were unable to communicate for whatever reason. But most decision-making is nothing like as difficult as the Schiavo case. I think that as living wills become more of a reality, they will complicate matters further in many cases.
It is difficult to see what specific medical situations should be covered. The case of persistent vegetative state is fairy clear-cut. But what if you could not talk, but could hear and move a finger or blink to communicate, like the author Jean-Dominique Bauby, suffering from the ‘locked-in syndrome’? What if you had a stroke that left you with a dense amnesia, unable to recognise your family and friends? What if, like David, a young man I met recently, you were to be paralysed from the neck down in an accident? I think many of us would answer now: ‘I’d rather die than live in that situation.’
But David, like many others with similar injuries, soldiered on through the awful trials of weeks in the Intensive Therapy Unit (ITU), and months in rehabilitation, and has rebuilt his life and career in a wheelchair. Had we based the decision on a living will, he might never have been treated in ITU after his crash. Similarly, if the family of broadcaster Claire Rayner had not ignored her living will, she might never have been treated in ITU for multi-organ failure, and would not be with us today. At present a patient’s advance refusal of treatment is binding on doctors under common law only. The Mental Capacity Bill, currently passing through parliament, will place living wills on a statutory footing.
This isn’t to say that all patients should be forced to receive such aggressive treatment against their will; far from it. But asking people to decide in advance how they will react to unimaginable suffering seems to me inhumane and unfair. As medical practitioners, it is our job to help patients and families make difficult end-of-life decisions, and often to guide them to an answer we feel is right. Knowledge, and perhaps more importantly experience, make doctors and nurses uniquely qualified to offer this kind of advice.
For example, one elderly man I looked after suffered a major stroke after an operation. He was drowsy, unable to talk or move out of bed, and unable to swallow safely without choking. We needed to decide whether to feed him artificially, using a nasal feeding tube. His daughters were deeply concerned, but also clear that his quality of life before coming into hospital was steadily deteriorating, with limited mobility and the onset of dementia. To the medical team looking after him, it seemed clear that it was cruel to prolong his life by artificial feeding, knowing that overall his prognosis was poor, and he was unlikely to regain much quality of life. This was very hard for the daughters, and they had to trust us. We had to be sure they agreed with our decision, but to make them take the responsibility for this final decision would have been dishonest, as they were acting on our advice. The feeding tube was not inserted, and he died peacefully within a few days.
This is by no means an unusual case. Most of these decisions are made quietly and kindly, between family members, doctors and nurses. In many ways it is surprising how few of them do end up in the courts. In the current climate of hyped-up public distrust of the medical profession, doctors are often inclined to understate their important role in these sorts of cases. But in our defensiveness, we may do patients a disservice.
I recently heard a prominent medical MP suggesting a scheme where patients would be asked to decide in A&E before admission to hospital, whether they would like to be resuscitated in the event of a cardiac arrest. This to me sums up the cruelty of doctors’ defensive approach to such decisions. Patients often have no idea of what resuscitation entails, and what would be their chances of surviving, and in what condition they would be if they survived. On top of that, they are ill, and not in any condition to make major decisions about their future.
I am all for well-informed patients having input into their care. Patients who have deeply held beliefs about possible treatments should be listened to, and their wishes followed wherever possible. But I don’t think we should force this responsibility on to everyone. Morbid worries about what happens at the end of our lives will not help us enjoy them while they last.
Dr Liz Frayn is a surgical trainee in southwest England.
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