6 steps to better pain relief in cancer - analysis by Dr Patrick Dixon, former Hospice / Oncology Physician - Future Health Keynote Speaker

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Relieving Pain - A DIY Guide

As a doctor who has cared for the dying I have often been asked to kill people. One reason is that the fear of pain is usually greater than the fear of death itself. All of us have relatives or friends who have died of cancer, and many of us have traumatic memories of a painful deterioration. What is scandalous is that in almost every case their suffering was largely preventable and unnecessary, inflicted not by the disease but by shocking medical ignorance, arrogance, complacency and pride.

Dr Ilora Finlay, Consultant in Palliative Medicine in South Glamorgan estimates that of 155,000 who died of cancer last year in her area, 70% were in pain at some time. She says that one in four cancer patients in the UK die without adequate pain relief - some 30,000 people a year.

Despite these ghastly statistics the search for a pain-free death has not been led by doctors but driven primarily by angry and frustrated relatives. Consumer pressure is the reason for the explosive growth of hospices from just 39 in 1977 to 208 today with 384 community care teams.

Care in these units is usually magnificent, but cancer treatment in the NHS is still far too obsessed with cure, and has fuelled the campaign for euthanasia. So what can be done? Here is a cut-out DIY guide to getting your own pain relief if you or someone you love has cancer pain.

1. Don't accept pain as inevitable.

Many people put up with pain because they expect cancer to be painful, or because they are afraid to tell someone because of what the pain might mean, or because they don't want to make a fuss.

2. Pester your doctor.

Many doctors are slow to take pain seriously. They fail to ask about it, and are themselves afraid to use powerful painkillers. My experience is that some are also unwilling to learn. After reading this you may know more than some of them do.

3. Insist on morphine if pain persists.

If I had cancer pain unrelieved by normal remedies, regardless of whether doctors expected me to live five months or five years, there is only one kind of medicine I would be interested in taking and that is morphine or a similar drug (an opiate), together with other approaches such as radiotherapy for bone pain and nerve blocks.

4. Enjoy proper pain relief without addiction or danger

A recent Gallup Poll on morphine use in cancer found that 72% think it is addictive, and 74% dangerous, but opiates are not addictive when given for pain and do not shorten life when properly used. They merely replace naturally occurring endorphins and enkephalins which are low.

For example if you give an injection of diamorphine (heroin) to someone who is fit, well and comfortable, the result will be a "rush", a high, a feeling of exhilaration and intense pleasure which is dangerous because it creates a craving for more. With regular drug abuse the brain shuts down its own production of endorphins and enkephalins with very unpleasant results, seen in symptoms of "withdrawal".

However if someone else is rushed to hospital with a broken leg, and the same dose is given, there is no high and no withdrawal, just analgesia. This explains why it is possible to maintain someone with chronic cancer pain on the same dose of opiates for months, and why, if there is a complete remission, the opiates can usually be stopped without a problem.

5. The right prescription for you is that which relieves pain throughout the day and night without unacceptable side effects.

Many doctors have a set dosage in their minds - say 30-60 milligrams of morphine every six hours. This is a hopeless approach. For a start the blood-brain barrier is different in each person so that in some only a fraction of the original dose actually reaches the pain receptors. Others have a liver which devours the drug rapidly, or a gut that only absorbs part of the dose. Others have receptors that are insensitive, and the illness itself may progress.

The person in pain is the one usually in the best position to judge when the dose is right, rather than the doctor. One person may need fifty times the amount of another and yet still be alert and active on a regime that would kill most healthy people.

Many doctors fail to realise that ordinary morphine needs to be taken every four hours because the drug is destroyed so fast by the body. However a convenient alternative is a slow release tablet or liquid which lasts a full twelve hours, especially helpful at night. The aim is to enable people to forget about pain, which is emotionally wearing, so that they can get on with living. For example, in the Lancet this week is a study showing that those on stable doses of morphine are safe to drive.

6. Get expert advice

It is your right to expect proper pain control in cancer treatment, so go on asking for it and change your doctor if necessary. A useful support in negotiating with your doctor can be a Macmillan, Marie Curie or Hospice nurse. These specialist advisors cover almost the entire country, not only for pain control, but also for the relief of other distressing symptoms and for emotional support.

I remember visiting a sixty five year old man with lung cancer who was at home with his wife. He ushered her out of the room and asked me to put an end to it all. He was in some distress with discomfort, lack of sleep, immobility and feelings of guilt at being such a burden on his family. It was the first time we had met.

I was able to promise him proper medication which he could control himself, a good night's sleep, greater mobility, practical help and emotional support as a result of which I hoped he would be able to enjoy the time he had left. He died peacefully from his illness a few weeks later. Euthanasia was never mentioned again. Why ask a doctor to kill you when you can have life worth living?

The real answer of course is better training at medical school and retraining for senior doctors, but old habits die hard. In the meantime those in pain need to take matters into their own hands and insist on better care, empowered by the knowledge that much more can be done.

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