The politics of pain

`FOR many of us, the fear of our manner of dying is greater than the fear of death itself," writes Dr Patrick Wall, one of the…

`FOR many of us, the fear of our manner of dying is greater than the fear of death itself," writes Dr Patrick Wall, one of the world's leading experts on pain. And the suffering that many of us fear most is cancer pain.

Dr Wall, who himself has widespread cancer, writes that "cancer pain is worse than useless. It provides absolutely no protective signal because the disease is far advanced before it starts. Once started, it announces the obvious and, if it goes untreated, it simply adds to the miseries of impending death. Worse, untreated pain accelerates death. Fortunately, the great majority of these pains can now be treated to bring real comfort to the dying patient."

Giving "real comfort" was an Irish-born nurse's experience as she cared for dying patients in London. Then her 47-year-old brother came home to die in Ireland.

After many years working in the UK, her brother developed cancer of the saliva glands in March 1998. By June 1999, the cancer had spread to the bone. When he was told that he had little time left to live, he chose to return home to die. At home, his pain was controlled by oral morphine sulphate but this stopped working for him. At a district hospital, he was given intravenous morphine, yet he cried out in agony throughout the last 24 hours of his life. He died in August 1999.

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"I am a qualified general nurse of 27 years, having lived in England for 31 years. I have seen many people of all ages and walks of life die. Never have I experienced such distress in someone's last few hours. His family witnessed his pain and distress, including our mother and his 21-year-old son. Watching one's youngest child die is traumatic enough, but for a mother to witness his enormous suffering up to his last breath is barbaric," says the nurse.

She believes her brother would not have died in such anguish if he had been treated with diamorphine, the technical name for the opiate, heroin, which is licensed for pain relief throughout Europe. In British hospices, subcutaneous diamorphine administered by pump is used routinely, after oral morphine sulphate, also an opiate, becomes insufficient to stop pain. But the Irish Medicines Board has refused to authorise diamorphine for use by palliative care doctors in the Republic.

"Too late to help my brother, I urge for the change in the pain management of the terminally ill dying in our so-called enlightened modern Ireland . . . there are 12-year-old children on the streets of Dublin able to obtain illegal drugs with what appears little trouble, yet in Irish hospitals and hospices, sick and dying are crying out in pain."

Should the use of diamorphine as a prescribed pain reliever be made legal in the Republic? Would it have made a difference in this case?

Dr Dympna Waldron, clinical specialist in palliative medicine, of Our Lady's Hospice and the Royal College of Surgeons, felt very strongly that diamorphine should be legalised for pain control in the Republic when she returned from working in UK hospices seven years ago. However, since that time, hydromorphone - an analogue of morphine sulphate which is up to seven times stronger than the equivalent dose of morphine sulphate - has become available as an alternative to morphine sulphate. Hydromorphine is extremely effective in cases where morphine sulphate stops working for the patient.

At the same time, she remains convinced diamorphine would be a valuable pain reliever for her Irish patients. "The more drugs you have, the greater chance of fine-tuned pain control with minimal side effects," she says.

"There are other factors in relief of pain that we are becoming more aware of with increasing research, in that it can be very valuable for some patients that develop complications with one painkiller, to have an alternative drug to rotate to with a different profile. And diamorphine could be very helpful in that situation and would give us a lot of added advantages. It would add ease to our daily work if we had more availability of drugs rather than a rigid number, because all have different breakdown profiles and maybe slightly different actions," she explains.

The Irish Medicines Board will not say why diamorphine has not been approved. According to sources in the medical profession, the Department of Health objects to diamorphine because it is heroin, and there is a serious problem of heroin abuse in Dublin.

There may also be cultural factors at work. There is a popular myth that morphine and its related strong opioids are addictive and hasten death, when in fact the opposite is the case. "The actual pain works as the physiological antagonist to the side effects. A strong pain with a strong dose can make the person brighter and more alert because pain is relieved," says Dr Waldron. Morphine, diamorphine and other opiates can help the suffering patient to live longer by relieving pain.

Palliative care has developed in the Republic in the absence of diamorphine to a level that satisfies most doctors. Dr Michael Moriarty, an oncologist in Dublin and medical spokesman for the Irish Cancer Society, says that there has been "no strong demand" for diamorphine. "The fact that the man in this case died in pain is the issue, rather than diamorphine. Dying in pain is not just due to a lack of diamorphine," Dr Moriarity asserts.

This is also the view of Dr Michael Kearney, palliative care consultant at Our Lady's Hospice in Harold's Cross. "People do die in pain and that is not unique, unfortunately, although they are becoming more of a rarity. Those stories were very commonplace 10 to 15 years ago . . . "I cannot comment on an individual case. I don't know why this man had such an awful time, there's no excuse for it," Dr Kearney adds. But the problem was not necessarily diamorphine, in his view. "Something else may have gone wrong," he says.

HE explains that managing pain in bone cancer would involve several drugs and that not everyone had expertise in the total management of pain. Diamorphine would not have made any difference, in his view. The drug, he explains, is rapidly broken down in the liver into morphine and has exactly the same pain-killing effect. At St Christopher's Hospice in London, studies comparing diamorphine and morphine have revealed that both drugs work equally well.

The difference between them involves administration. Morphine is less potent than diamorphine, and therefore double the amount must be used, which is less comfortable for the patient and less convenient for the medical staff. This fact is stressed by Dr Nigel Sykes, head of medicine at St Christopher's Hospice, London, where the hospice concept was created in the 1960s by Dame Cicely Saunders. He uses morphine orally, and diamorphine intravenously. He insists, however, that if deprived of diamorphine, he would have no problem treating pain just as well with morphine. The case of the nurse whose brother died in pain "sounds like a problem with the total pain relief approach, rather than with a lack of diamorphine," he says. Asked to comment, the local health board replied that it could not discuss individual patients' cases with the media, even with the permission of the family, although its spokeswoman defended the expertise and quality of its palliative care.

However, with her vast experience of caring for dying patients, the nurse remains convinced the unavailability of diamorphine was at the core of her brother's appalling last hours.

Kathryn Holmquist can be contacted at kathryn.holmquist@weblink.ie

Pain: The Science of Suffering by Patrick Wall is published by Weidenfeld & Nicolson, price £14.99 in the UK