WHAT MATTERS IS RELIEF FROM SUFFERING

'We Have To Return To Dancing With The Angel Of Death And Not Just
Fighting A War On Cancer'

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 agonising 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 tumours 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 prioritised 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 tumour 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 unrealisable 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 tumours, 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."