Stoma & other surgery: Decision-making and information needs
Decision-making and information needs
Surgery is the main form of treatment for colorectal cancer so it is seldom appropriate to decide against it. However, it is important to understand what surgery and the recovery process will involve and to feel able to accept or question advice from an informed perspective. If you do not understand what you have been told it is important to say so and to ask questions. If what you have been told seems unsatisfactory, it may be helpful to seek a second opinion.
Several people had been invited to share in decision-making about their surgery but felt that this was an unrealistic expectation since they had no expertise in the area. One man, who actually had a background in medicine, describes such an encounter with his surgeon. Other people had been encouraged to ask questions but pointed out that without being offered information they didn't know what questions to ask.
A number of people had sought second opinions because they, or a member of their family, were not satisfied with the scenario that had been presented. Two of these people had been told they would definitely need a permanent colostomy when this turned out not to be the case. The other two lacked confidence in the first surgeon they saw and were much happier with the second. One woman explains why she wanted a second opinion and the contrast between her two consultations.
The level and quality of information offered to patients before their surgery was extremely variable. Overall, people who were well briefed before their operations seemed to find the experience less frightening. A few people were too ill to take in much information or preferred not to know too much about what was going to happen.
Some people were extremely satisfied with the information they received before surgery and were thoroughly reassured by it. One man describes such a meeting with his consultant. Another man had a satisfying consultation because he had researched his condition in advance and knew what questions he wanted to ask.
Others had been offered information but felt that the surgeon's choice of language was unhelpful. One man explains how his surgeon's light hearted explanation of his surgery left him confused.
People who had emergency surgery were sometimes given minimal information about what was happening to them. One man did not know what had happened until 5 or 6 days after his surgery.
A woman who has had six major cancer operations recalls her fears before her first surgery and how every subsequent operation brought new concerns. She stressed the importance of anticipating people's information needs before major surgery.
