When people read the work of writers like John Diamond or Ruth Picardie, articulate and amusing almost to the very end, they often think that dying from cancer really needn't be so bad. It's great if we break down taboos about death and start to talk more honestly about the way we would like to go. But what often gets forgotten is that for a lot of people, the reality falls far short of the ideal of a good death. I have seen two people whom I love die from cancer, my father and my grandmother. Those were not easy deaths. Those were sometimes agonizing struggles.
If you have watched by the bedside of somebody who is dying of cancer, you might have seen that kind of struggle. You might have seen an articulate, forceful, energetic personality felled even before death; felled not by fear, but by pain. Neither my father nor my grandmother endured their pain in the hope of some miracle cure. When their cancers were finally diagnosed, for both my father and my grandmother, the diseases were unquestionably terminal, with extensive secondary tumors that had long been growing undiagnosed. Both of them immediately understood that death was imminent. They refused treatments that held out false hopes. What they wanted was excellent palliative care, to ease upon the midnight with no pain.
And sometimes they got decent pain relief that turned off the suffering and gave them back their normal selves. But sometimes they were in situations where they were left to suffer. If you've ever had to chase doctors around a hospital or a hospice, literally begging for more morphine for a dying person, you will know what a callous face our health services can show towards the dying.
That's why I was so delighted to read that Britain's leading cancer specialist, Professor Karol Sikora, had spoken out last week in a bid to change the priorities of the NHS when it comes to treating patients with terminal cancer. He said that more resources should go to improving the quality of patients' days among the living. He spoke eloquently for a change in attitude, and reminded his audience that in the 19th century, when doctors had fewer treatments to hand, they were sometimes imagined as dancing with death rather than fighting it. He said, "We have to return to dancing with the angel of death and not just fighting a war on cancer."
This is the last thing that most doctors would say. Because when it comes to cancer, even cancer that is known to be terminal, the language of war dominates. I spoke to Karol Sikora after he delivered his talk, and he said that doctors often collude with patients who have terminal cancer in pretending that the fight goes on. "Many patients are seeking immortality. And we have raised the expectation that there is always something that can be done. Over the next 10 years, as new treatments come on stream for cancer care, that will be even more the case. Hopes will be raised unrealistically."
He has seen that doctors can persist in giving more and more chemotherapy to ravaged, dying people, so increasing their suffering and only prolonging their lives by short periods, rather than encouraging them to die an easeful death. "Palliative care is still the Cinderella in hospitals. Pain control just isn't done very well. It isn't prioritized enough. There is still this belief that one should face pain bravely. There is still a fear of high doses of morphine."
Amazingly, this fear does persist. Although, as we all know, morphine-based drugs can be addictive, that is hardly an issue for a dying person or even for someone who hopes to survive, since dosage can be gradually tapered off if pain recedes. Yet a study carried out only last year in the US found that the fear of addiction often stopped doctors prescribing sufficient doses to give patients a bearable death.
And pain relief isn't just a poor relation in the health establishment. Who in the media wants to talk about it, when they could talk about a much more exciting subject, such as whether or not doctors should kill their patients?
"The media love the issue of euthanasia," Karol Sikora points out correctly. "It's seen as a dramatic decision, whether or not to press the button. But it really isn't central to most people's experiences, so long as you can control their pain. In all my years treating dying people, no one has ever asked me to help them die. Oddly, people with cancer have a lower suicide rate than the general public."
Studies have borne out the fact that when pain is controlled, patients rarely express an interest in euthanasia. Various studies carried out over the past decade have found that fear of pain is what lies behind the majority of requests for assisted death. Sixty-nine per cent of cancer patients in one study said that they would consider suicide if their pain was not adequately treated.
Untreated pain can quickly make the bravest and most articulate individuals withdraw into hopelessness and depression. That's tough on their families and toughest of all for the patients themselves.
It's not all doom and gloom. As I saw with my relations, when good palliative care in hospices and at home comes on stream, it can transform those last hours and days. Professor Sikora agrees that because of the hospice movement, good palliative care is not as sparse here as it is in some countries. But his desire to kickstart a new debate about this issue is timely. As he says, new treatments for cancer are being brought in all the time. And many of these will be extremely expensive. In the squeeze in budgets that will occur, it is likely that the whole business of palliative care will become even more of a Cinderella in the NHS.
If this debate begins as it must do the danger is that it will be seen as an either-or debate. Professor Karol Sikora knows well that palliative care is not the only aspect of cancer care that needs a shot of money. Survival rates for cancer in Britain are still woefully low. The gap between patients reporting symptoms and being seen by specialists is so long that too many people in Britain die prematurely. Some are the victims of gross negligence, others just fall through the gaps in rickety services. The experience of the widow who received a payout from the NHS last week because her husband suffocated from a tumor in his throat that had been diagnosed as influenza is hardly unique.
But if a terminal cancer is diagnosed, the emphasis should go to palliative care rather than ever more aggressive treatments that hold out crazy hopes of an unrealizable immortality. There is a grand and noble aura surrounding the idea that one should fight to the bitter end, that one should not go gentle into that good night. Patients who won't accept their approaching death are still seen as brave and spirited. Doctors who go on and on with aggressive treatments see themselves as generals in the war on cancer, cutting out tumors, poisoning and irradiating them, even in the face of their patients' suffering. But we have to try to put aside these warped ideals: there's really nothing grand or noble in leaving patients to struggle with agony.
Professor Karol Sikora has different ideals for cancer doctors. He knows that it would be possible for every death from cancer to be painless. "The aim", he says, "is that everyone should have a good death."
© 2001 Independent Digital (UK) Ltd