Pancreatic Cancer

Communication with health professionals

Having to deal with a life-threatening illness is a big challenge. If people have problems communicating with health professionals they may have further difficulties. 
Some people said that communication with their doctors and other staff had been excellent. Many of those who had had surgery recalled how their doctors had drawn diagrams to show them exactly what surgery would involve and that their doctors had used language that they could understand (also see ‘Finding information’).
However, communication between doctors and those we interviewed was not always good. For example, some did not learn that they had cancer until they were referred to a hospital that specialised in cancer or when they were introduced to a Macmillan nurse (see ‘Hearing the diagnosis and prognosis’).
People suggested that communication was poor for several reasons. Firstly, medical terms are often unfamiliar to the lay public. Even doctors themselves are sometimes unsure whether to use certain terms such as ‘neuroendocrine carcinoma’ or ‘neuroendocrine tumour’. William did not understand that a ‘growth’ in his pancreas was life threatening. The next day when a junior doctor remarked that he had a ‘terminal condition’ he became alarmed (see ‘Hearing the diagnosis and prognosis’). When Saba’s mother’s symptoms were being investigated, the doctor told Saba that her mother had ‘metastases’ in her liver. Saba did not realise that this meant that the cancer was advanced and had spread from another part of the body and that a cure was unlikely.
Richard (Interview 22) said that the surgeon who delivered the news of his pancreatic cancer explained only the surgical options and not what would actually happen to him. Anthony appreciated the way his wife’s consultant explained the facts but said that for emotional support they had to turn to the nursing staff. He wished he had understood this earlier.
Bob thought that sometimes communication between him and his doctors failed because they were busy. He also wondered if some were just not interested in his case.
Sometimes communication was bad because continuity was lacking. Some people saw a different doctor every time they went to the clinic. One man thought that things went wrong because the doctors and nurses were too busy and because the hospital was ‘in chaos’. Another man noted that weekends were particularly difficult because staff who were not part of the regular team had different opinions.
Continuity of care may also be lacking when people are being cared for at home. When Simon’s wife, Karen, was dying at home he said her care was excellent but the GP, the hospice and the community health care team did not communicate adequately. The situation was worst at weekends when Karen saw an out-of-hours doctor who didn’t have notes about her.
Communication may also be difficult when patients are very ill or dying. People are all different and it is hard for doctors to gauge whether or not their patients want to know the prognosis (see ‘Hearing the diagnosis and prognosis’). Some critically ill patients remain optimistic about a recovery even when the situation is very bad. They may not want bad news or to talk about death and dying.
However, some patients want to know the prognosis and find it upsetting when they are given unclear or contradictory information. Some people noted that doctors and nurses were very reluctant to give them bad news. One day a doctor told Peter (Interview 36) that he did not have cancer and that he might need surgery to remove the small tumours he had in his pancreas. The next day another consultant told him that he had a large neuroendocrine tumour which was ‘totally inoperable’ and that the prognosis was grim.
Another man received conflicting information from members of the team. A nurse told him that his treatment (chemoradiotherapy) was being given as a ‘cure’, but the specialist said this was not the case when he was asked.
William wanted to know what would happen if his cancer came back after he had finished the chemotherapy. His oncologist seemed reluctant to give him the bad news that if it came back it would probably be in his liver or lungs. William explained that in order to get information he had to ask just the right questions. Thinking back over what had happened since he became ill he said he had at times doubted he was getting honest answers from the doctors. On the one hand he wanted information, but on the other the consultant had been a bit blunt when giving him the results of the biopsy and had told him that he would probably have just a year to live.
John’s (Interview 21) first wife, Ann, died from pancreatic cancer. Her doctors did not tell them that the situation was ‘desperately bad’. John understood that it was hard for doctors to tell them that Ann was dying but he wished he had been told what would happen. On the other hand he realised that bad news might have spoiled the last months that he had with Ann and that doctors have a difficult task deciding what to tell people.

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Last reviewed September 2018.
Last updated June 2015.


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