The British way of death

Last week, a public autopsy provoked a storm of controversy. But should we be more worried about the way patients are treated before they die? Jane Feinmann on how doctors fail the terminally ill

A leading cancer specialist, who recently developed a tumour and refused a course of treatment that he admitted would have been a routine referral for his patients, explained the discrepancy to a colleague. "It wouldn't do me any good," said the doctor, who has since died. And he added: "But of course I refer my patients because they expect me to do so."

The conversation was treated as highly sensitive information when it was repeated anonymously at a recent conference, touching as it does on an increasingly controversial area of health-care management – the care of the dying.

Some doctors estimate four-fifths of the NHS's cancer-drugs budget and around 40 per cent of its total budget is spent in the last year of life – and more is spent during the last few weeks than on the months and years of care that precede it.

There's growing unease, however, that this huge slice of funding, mopped up by expensive new drugs and the costly, routine interventions of intensive care, pumps to sustain circulation and respirators to ventilate the lungs, is not necessarily money well spent. "Many patients today die deaths they deplore in locations they despise," is the bald claim of one expert, quoted in the British Medical Journal. For all the funding and expertise, the terminally ill frequently spend their final weeks in uncontrolled physical pain and emotional isolation.

There's also recognition that more is needed than mere tinkering with the system – by, for example, opening up more hospices or providing more palliative care. Both within the NHS and among the public as a whole, what seems to be needed is a radical shift in our attitudes to mortality. As Rabbi Julia Neuberger, chief executive of the The King's Fund, an independent health policy foundation, puts it: "Our fear of death, our head-in-the-sand attitude... results in thousands of people dying every year, unnecessarily badly."

The factors conspiring to frustrate the universal hope for a "good death" swing into action right from the very first moment when a doctor breaks the bad news. Inevitably this comes as a terrible shock, but its impact is frequently made far worse by the doctor's reluctance to put a death sentence into words. An extreme example comes from Jane Salvage, former editor of Nursing Times, whose mother was left to draw her own conclusions about the serious nature of her cancer when, after weeks of tests, she received a letter telling her she had an appointment in two days time at a department of palliative medicine.

Having learnt the worst, the next thing a patient wants to know is, "How long have I got?"

"Achieving a good death, one that is consistent with the patient's wishes, requires some advance warning and that is just not happening," says Nicholas Christakis, Professor of Medicine and Sociology at Chicago University, and author of Death Foretold: Prophecy and Prognosis in Medical Care. Yet, he says while "physicians are superbly trained in diagnosis and treatment, they know less about, ignore, and often actively avoid the serious business of predicting the moment of death".

Professor Christakis was one of the speakers at a conference earlier this month entitled "Prognosis and Preparation", organised by King's College, London, as part of its year-long symposium "The Art of Dying". "Prognosis is a skill that every respectable physician developed a century ago, but it is now virtually ignored in medical education and research," he warned. Instead, when pressed to provide a prognosis, doctors frequently practise "ritualised optimism", fearful that telling the truth will be a self-fulfilling prophecy.

His research shows that prognoses are routinely over-optimistic, with doctors predicting that terminally ill patients will live 5.3 times longer on average than they actually do. Other researchers have shown that, where possible, doctors remain silent. Cancer specialists withhold information on survival from two out of three patients.

This is, of course, done with the best of intentions. Doctors are rightly concerned about keeping a patient's spirits up. A recent study in the BMJ found that cardiologists' "major fear" in delivering a prognosis to people with terminal heart failure is "saying the wrong thing and the patients 'losing faith' in their professional carers, whereas the general-medicine doctors did not want to see the patients give up the fight for life".

However, the medical profession's reluctance to be realistic about prognosis makes a major contribution to the tendency to overtreat patients in the final days. This mesh of half-truths and white lies, backed up by stories of miracle cures and 'cautionary tales' of patients given six months to live who attend their doctor's funeral 20 years later, "regularly tilts both patients and their doctors in favour of tests and procedures at a point when no reasonable gain can come of them," wrote one American oncologist last month in The New Yorker magazine.

Even so, the issue is more complex than truth versus well-meaning obfuscation. In America, obtaining a clear prognosis has become a big issue, but that could have been driven more by financial than humanitarian considerations. Baroness Finlay of Llandaff, another speaker at the King's College conference, warned: "This should not be imported wholesale from the US, where cover for hospice care is only available to those who waive the right to cover for curative treatments. It is a practice that may be dictated less by the interests of the patients and more by the health economics of the Medicare system."

She believes that last-minute treatments can sometimes be very valuable. "I certainly see people who benefit enormously from fairly unpleasant treatment that can extend their lives by only a few weeks," said Baroness Finlay, who is Professor of Palliative Medicine at the University of Wales. One woman, she said, lived an extra six weeks and during that time talked more with her husband than in the whole of their marriage. "It would have been a tragedy if she had not been treated."

But other doctors are convinced that NHS treatment in the final months of life often fails patients. Last year, Professor Karol Sikora hit the headlines when he appealed to colleagues to "return to dancing with the angel of death and not fight a war on cancer". Doctors, he said, frequently "persuade patients to have expensive chemotherapy because of the exciting challenge of battling the disease even when there is little hope of success... so that they frequently endure third, fourth and fifth types of chemotherapy by which stage one really has to say 'That's enough' ".

So to treat or not to treat is far from a clear-cut decision. But at least in the case of cancer patients, if the option of further treatment is rejected, there is usually the option of palliative care. However, if you are dying of something else, your choices are far more stark. Less than 5 per cent of referrals for palliative care have a non-cancer diagnosis. Terminally ill heart-failure patients – a disease of the elderly, which affects seven out of 10 people aged 80 to 89 – experience social isolation and increasing disability, frequently under the care only of their GP, according to a study in last month's BMJ. The last few months of these patients' lives can be grim. They are typically spent being shunted from hospital to community and back again. Repeated admissions to different consultant teams are common, and patients' medical notes sometimes arrive on the wards after the patient had been discharged or died. Their final days are likely to be spent in intensive care, still unprepared for what is to come.

Change is coming – but it's slow. Hospices are still largely supported by charities, targeted at cancer patients – and access to hospices is skewed against the elderly, as well as those from deprived areas and from minority groups.

But palliative care is now taught routinely at medical schools and to junior doctors. At Southampton, for instance, it's part of the core curriculum, with lectures and workshops on care of the dying throughout the undergraduate course. And the National Institute for Clinical Excellence is due to issue its first draft guidelines on palliative care for cancer patients next month.

But for real change to come about, end-of-life care will have to be taken much more seriously than it is currently at the level of policy and practice. Ideally this will be combined with an end to seeing death in purely medical terms. That is the idea behind the King's College lecture series, which includes contributions from the arts, social scientists and humanities as well as clinicians. "Focusing on death isn't necessarily depressing," says Irene Higginson, Professor of Palliative Care and Policy at the college. "It can encourage creativity and make a good life more achievable – and as the end approaches, it means doctors and patients can be more open with each other and thereby achieve a more humane, holistic system of care."

For information on events in 'The Art of Dying' symposium, call 020-7848 2929.

This is an edited version of an article that appears in the December issue of the newsletter 'Medicine Today' (www.medicine-today.co.uk)