Aim. This paper reports a study of the experience of and concerns about weight loss described by patients with advanced cancer, their caregivers and nurse specialists.
Background. Weight loss is reported to be one of the commonest symptoms experienced by patients with advanced cancer. There is evidence that it can be of concern to patients and their caregivers. However, little is known about why this is the case or how people might be helped to live with the symptom.
Method. An exploratory study with a purposive sample of 30 patients, 23 caregivers, and 14 specialist nurses from the South of England was conducted in 2003. The in-depth interviews focused on the experience of weight loss and its management. Interviews were transcribed verbatim, then analysed using an approach informed by Wolcott's framework for qualitative data analysis and Miles and Huberman's ‘mixed strategy for cross-case analysis’.
Findings. Concern was experienced when advanced cancer became visible through weight loss. Visible weight loss symbolized proximity to death, loss of control and both physical and emotional weakness. Despite this, weight loss was not routinely assessed by palliative care nurse specialists, who, like others in the patient's social network, respected a weight loss taboo in the belief that little could be done to help people live with the symptom.
Conclusion. Weight loss-related concern might be mitigated if clinicians adopted a systematic and proactive approach to the management of the symptom that breaks through the weight loss taboo.