- guardian.co.uk, Sunday November 17 2002 00.41 GMT
- The Observer, Sunday November 17 2002
Of course we look to doctors to keep us alive for as long as possible, but when the moment comes when no more can be done, we assume that priorities will change. We believe that doctors will know instinctively when to halt painful treatments and concentrate on comfort and pain relief. Above all, like the heroine of a Hollywood weepie, we expect to be given an accurate answer to the question: How long have I got, doc? Then, armed with an accurate schedule, we'll have time to confront our mortality - to say our final farewells, make arrangements for the kids and decide when, if ever, it's appropriate to say, 'I'm sorry'.
But a recent conference at King's College London - part of 'The Art of Dying', an innovative year-long programme involving historians, philosophers and social scientists as well as artists and film-makers - drew attention to the fact that most deaths don't happen this way. The course of the long, degenerative diseases that normally precede death today remains hugely uncertain and there is growing concern that the failure of both the medical profession and the public to address this uncertainty contributes to 'bad deaths'. Doctors who specialise in terminal illness are divided over the best way to deal with the problem.
The conference looked at demands for medicine to take steps to improve the accuracy of prognosis. Recent research shows that the main problem is not that doctors give up too quickly but that they are over-optimistic. With cancer, doctors averagely predict that the terminally ill will live more than five times longer than they do. For heart failure, it's even worse. Half of patients who die of the disease within three days had been told that they had six months left. Even physicians working in palliative medicine are able to predict accurately in fewer than half their cases.
The result, says academic Nicholas Christakis, is that the terminally ill 'seek noxious chemotherapy rather than good palliative care, or reassure loved ones that it is not yet time to visit, only to lapse into a coma before having a chance to say goodbye.'
This doesn't have to happen, says Christakis, who has identified the pressures that skew doctors' judgment. 'Doctors avoid prognostication... because they don't want to deal with its unpleasant aspects or to think about the limits of their ability to change the future.'
Faced with the risk of withholding potentially lifesaving treatment or hurting patients by thrusting unwanted information at them, doctors develop 'ritualised optimism', the 'when in doubt, suspect recovery and act accordingly' approach. It's an approach that involves recourse to superstition, to the fear that destroying hope or the 'will to live', can in turn bring about a self-fulfilling prophecy, says Christakis.
Christakis's recent book, Death Foretold (£21, University of Chicago Press), makes the case for the profession sharpening up its act on prognosis, improving education and clinical confidence. Above all, he says, doctors need to 'stop viewing the death of their patients as a personal or professional failure... and in changing their thinking, they might realise that there is much that patients can hope for even when death is inevitable.'
For British experts, however, the main problem is not so much that doctors fail to produce an accurate prognosis but that they fail to confront the uncertainty. A study in the BMJ last month revealed that the majority of people with heart failure die without even being told they have a terminal illness. The BMJ condemned as 'appalling and disturbing' the fact that this large, mainly elderly group of people suffers 'pain, confusion, anxiety and depression' in a 'gradual decline, punctuated by episodes of acute deterioration to sudden, usually unexpected death'. Yet it acknowledges that the difficulty of predicting the 'illness trajectory' of heart failure 'creates uncertainty that can virtually paralyse doctors'.
This uncertainty pervades even cancer care, where the illness trajectory is much easier to predict. Specialists withhold a known prognosis from two out of three patients, research shows. And experts warn that people with terminal cancer are too often persuaded to 'have expensive chemotherapy because of the exciting challenge of battling the disease even when there is little hope of success'.
The problem, says Baroness Finlay of Llandaff, Professor of Palliative Medicine at University of Wales, is that: 'There are huge risks in delivering a bad prognosis, not least the risk that by being labelled as "dying", patients will be denied useful life-prolonging treatment.'
What doctors can do, she says, is acknowledge to patients that there is uncertainty. 'That opens up the possibility of an honest, sometimes heart-searching discussion between doctor and patient about the future, about whether they want to be resuscitated, what kind of follow-up care they want for their children, even how they want to be dressed for their funeral. It's an emotionally-charged subject for both sides but it can be very rewarding and it doesn't require an accurate date of death.'
In other words, as Nicholas Christakis puts it, is 'people would benefit from having their doctors focus on the hope of a good death'.
In this country, the voluntary and charitable sector is making a useful contribution to this end, not least in its insistence that people working with the dying require training to come to terms with their own fears around death and that they need to develop the art of listening to, rather than managing, the dying person.
Rosetta Life places trained artists in hospices to work with patients and explore their 'story' and find an appropriate art form to express it - whether it is digital art, poetry, photography or, even in one case, an opera. 'For many people facing a terminal illness, the discovery of their creative potential offers them a chance to find a voice, to rediscover themselves at the very moment they may feel they are lost,' says artistic director Lucinda Jarrett.
Sally Mijit's artist husband, Akbar, who died of cancer at a London hospice last September, started working with the charity when his energy was at an all-time low. 'It's so easy to become institutionalised in a hospital, to focus only on the next meal, the next blood-pressure reading. Rosetta Life brought something quite different into our lives.' Even though he had peripheral neuropathy and could hardly move his hands, Akbar started to paint with bright, vibrant colours, painting red and yellow flames.
Another organisation, the Befriending Network, places trained volunteers with the terminally ill, helping people to face up to what is happening to them; while The Natural Death Centre stresses the self-help approach, providing detailed guidance on living wills, death plans and advance funeral wishes.
But such projects are inevitably limited. Real change is needed within the NHS - and, for that to occur, the profile of terminal care must be raised. The Art of Dying at King's College has just that aim in mind.
'If we're going to provide truly humane care for the dying alongside good curative services, if we're going to offer choice to die at home if that's what people want, we need more research, better guidelines and better funding,' says Irene Higginson, Professor of Palliative Care at King's College, London, one of the organisers of the event. For that to happen, the medical profession as well as general public need to focus on what constitutes a good life before death and how it can be achieved.'
·The Art of Dying: 020 7848 2929; Rosetta Life: 020 7520 8270; The Natural Death Centre: 020 7359 8391; The Befriending Network 020 7689 2443.
