Living with Dying

Pain and pain control for people with a terminal illness

Pain is a problem for many people with terminal illness, although it is certainly not inevitable. Advances in pain control mean that pain can often be relieved. Different painkillers suit different people and to treat the pain most effectively it is sometimes necessary to try several types, under medical supervision.

The perception of pain is affected not only by physical symptoms but also by psychological factors, such as the emotions of fear or anger, by social factors, such as worry about family and finances, and by spiritual belief. Sometimes people worry that their pain might indicate that the disease has spread.

Pain may vary enormously from a dull ache to a severe stabbing pain. The people we talked to had experienced many different types of pain. For example, a man with multiple sclerosis said that at times he felt as if his muscles were being electrocuted.

Some people had more than one type of pain. One woman with breast cancer said that she was plagued with “all sorts of aches and pains”. However, other cancer patients have very little or no pain throughout their illness.

Many drugs are used to treat pain, including non-opioids, such as paracetamol and ibruprofen, and opioids, such as codeine and morphine. Other drugs, such as antispasmodics, antidepressants, and corticosteroids can help too.

People often develop their own routines to remind them to take their drugs at regular intervals. One woman, who was helped by a clinical psychologist at a pain management clinic, had learnt the importance of what she called 'planning, pills and patience'. She took different drugs at different times, sometimes as many as 19 tablets a day.

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One woman, who at first denied she was in pain, was admitted to a hospital ward for several days so that her pain could be controlled with morphine.

A man with oesophageal cancer described the excellent pain control he had had when he was in hospital for surgery. He was confident that when he reached the last stages of his illness any pain would also be well controlled.

Pain relief clinics may also be able to offer nerve blocks for pain relief and other treatments for pain also include radiotherapy (for cancer and bone pain), physiotherapy, and occupational therapy. Alternative therapies such as acupuncture and complementary therapies such as relaxation, massage, counselling and visualisation may help too. Surgical collars, slings, corsets, walking aids, wheel chairs, hoists, and surgery may also be used to reduce pain.

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One woman was grateful for the advice about pain that she received from a nurse at the local hospice. The nurse suggested alternative medication and she recommended a TENS (transcutaneous electric nerve stimulation) machine, which could be hired from the local pharmacy.

During the past 10 years there have been major improvements in the treatment of pain for those with cancer, but limited research on the assessment and management of pain for those with other diseases. A woman with chronic obstructive lung disease said she would like to have had access to good pain control, either in a hospice or a pain control clinic, but could get neither locally.

As with all medications, pain control must be balanced against side effects. Some people said they did not want to be 'drugged up to the eyeballs' and would rather tolerate some pain. A man who described his pain as intolerable was told that if he were given the drugs needed to control the pain he would not be aware of his surroundings and he would need 24- hour one-to-one care.

Others experienced various side effects of painkillers, such as constipation, but managed to overcome these side effects by taking other drugs, such as laxatives. A woman with lung cancer took morphine which made her 'dopey' but altogether her pills made her feel quite 'high'.

The man with multiple sclerosis (mentioned above) said that he was fortunate to attend a hospital which had a team especially set up for people with this illness, and that the consultant successfully managed his pain with morphine, while keeping unwanted effects to a minimum.

Last reviewed July 2017.

Last updated August 2014.

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