Pancreatic Cancer

Pain management and other palliative care

People with advanced pancreatic cancer often have various symptoms that may require special expertise. The GP may be able to deal with some of them. Specialists from different disciplines may be involved in patient care, for example, from gastroenterology, dietetics, radiology, surgery, oncology and palliative care. As the disease progresses jaundice may recur, there may be intestinal block, fluid in the abdomen and legs may build up, and pain may get worse. The management of constipation often needs ongoing attention. Many pain relieving (analgesic) drugs cause constipation.

Pain management includes chemotherapy or radiotherapy, the use of pain relieving drugs, and anaesthetic blocks. People may try to control pain in other ways too, for example, by using a Transcutaneous Electrical Nerve Stimulator (TENS) machine, massage, or heat from a hot water bottle (see below).

Bob said that chemotherapy had relieved his pain so he no longer needed analgesics. Another man had stopped using painkillers after taking apricot seeds (see ‘Complementary therapies, diet and other lifestyle changes’). Other people spoke at length about pain and how they managed it. In some it had taken time to find the right dose of painkiller to relieve the pain. As the pain increased over time they needed to increase the dose or change to a different drug or method of pain control. Some were managing with paracetamol alone or combined with codeine or anti-inflammatory drugs, while others had moved onto morphine taken as tablets or as a liquid, or by subcutaneous injection or by subcutaneous infusion with a syringe driver.

Ann said that pain made her depressed and anxious. Pain stopped her sleeping and made it hard to concentrate. She was glad that her doctors had her pain under control most of the time. When Ann felt ill, hot baths and hot-water bottles made her feel better. Talking to other people as a means of distraction sometimes helped too.

Donna’s inoperable tumour had spread to her liver. She decided against chemotherapy. Before her diagnosis she had a lot of abdominal pain. This got worse as time went by. At first she sucked a ‘lollipop stick’ containing a drug called fentanyl, a strong analgesic. Gradually she needed more pain relief so started injections of morphine. She also used a Transcutaneous Electrical Nerve Stimulator (TENS) machine. TENS machines deliver small electrical pulses to the body via electrodes placed on the skin. Donna found that helped.

Lesley had pain in her side from secondary tumours in her liver. Her symptoms were well controlled with slow release morphine tablets and anti-inflammatory tablets. David (Interview 09) had severe back pain for 15-20 minutes at a time. The Macmillan nurses helped him manage the pain. David visited the local hospice, ‘a wonderful place’. There he discussed how doctors and nurses would manage his symptoms as death approached, and talked to the staff about where he might like to die.

Adrian also had severe pain. For a while he had a fentanyl skin patch for pain relief. He also took oxycodone, a strong opiate analgesic, during the night if necessary. Oxycodone can be taken as a liquid or a tablet. Gradually Adrian had to take more and more oxycodone, which led to side effects such as constipation, so he decided to have a percutaneous coeliac nerve block, a specialist procedure. He was also prescribed anti-depressant tablets, which lifted his mood and helped him sleep.

We interviewed some relatives of people who had died. Some had found the local Marie Curie nurses, or nurses funded by other charities, such as Macmillan Cancer Support, or hospice nurses, had been invaluable for coordinating care and managing pain. John (Interview 21), for example, said that nurses from The Ellenor Foundation hospice charity helped greatly when his wife was dying.

When Hugh’s mother was nearing the end of her life her pain was quite well controlled. She had a syringe driver (sometimes called a pump), a small portable, battery-powered machine containing a syringe with morphine. Attached to the syringe was a thin piece of tubing with a very small needle on the end, inserted just under the skin. The syringe driver allowed his mother to have a small dose of morphine at a constant rate. Hugh remembered that one day the syringe driver’s battery ran out, causing a temporary problem, but otherwise his mother’s last weeks were not too painful at all. New models of syringe driver have an alarm to warn people when the battery is running low.

Other family members we interviewed told a rather different story. When their relative had been ill the pain had been poorly controlled and palliative care had been inadequate. Saba, for example, felt that the ‘system’ had let the family down. Doctors found it hard to manage her mother’s pain because if her mother had enough morphine to control the pain she became ‘delirious’. Saba’s mother was admitted to hospital because of pain and breathlessness. She hated being there and felt humiliated when a male nurse had to help with her personal care.

Susan’s mother also had a lot of pain, especially at night. Her doctors couldn’t find the right dose of morphine because when she took a higher dose she developed hallucinations. The morphine also made Susan’s mother very constipated. The district nurse helped with enemas.

Simon noted a lack of communication between his GP, the local palliative care team, and his wife’s oncologist (see ‘Communication with health professionals’). He and his wife Karen did not know about all the available services, and looking back he realised that they should have used them more. Simon wished that Karen had had more help with her nausea and vomiting. He also said that the palliative care team had told them it was better to prevent pain with adequate medicine than to wait until pain relief was needed, but Karen hadn’t acted on this and so was in pain ‘every single day’. Simon thought that she had worried about the side effects of the drugs. Karen refused morphine until quite late in her disease; near the end she used a syringe driver. Sometimes a doctor had to drain fluid from Karen’s abdomen to make her more comfortable.

Pain, vomiting, fluid retention, and symptoms associated with jaundice, seemed to bother people most as they neared the end of their lives. Other problems included breathlessness, indigestion, bloating, lack of appetite, weight loss, bed sores, incontinence and depression (see ‘Symptoms of more advanced disease’).

A consultant we interviewed stressed that the GP and the palliative care team should be involved early in the disease, and that they should make sure symptoms are well controlled day-to-day. Several people we interviewed said they received regular home visits to assess their palliative care needs and to deal with pain control. For more on palliative care see Healthtalk website on ‘Living with dying’ and The National Council for Palliative Care.

Last reviewed June 2015.
Last updated June 2015.

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