'Nothing can be done. These are the words they tell me': Exploring the experiences of weight loss in people with advanced cancer

Hopkinson, J.B., Wright, D.N.M. and Corner, J.L. (2005) 'Nothing can be done. These are the words they tell me': Exploring the experiences of weight loss in people with advanced cancer. ECCO 13 - The European Cancer Conference, Paris, France. 30 Oct - 03 Nov 2005.

Abstract

Background and aim: Weight loss is one of the commonest symptoms experienced by patients with advanced cancer, with prevalence reported to be between 39% and 82% [1]. Management has focused primarily on the use of nutritional and pharmacological interventions, which have been found of limited value in arresting or reversing the symptom [2]. Whilst there is evidence that weight loss can be of concern to patients, little is known about why it can be experienced as distressing or how people might be helped to live with the symptom. This paper reports a study of the experience of and the concerns about weight loss described by patients with advanced cancer and their caregivers. Its purpose is to examine the potential for mitigating weight loss related distress. Method: The research was an in-depth exploration using a case study design. The cases were two community palliative care teams working in the South of England in 2003. Multiple methods of data collection included interviews to gather detailed information from 30 patients, 23 carers and 14 nurse specialists. These semi-structured interviews focused on the experience of weight loss, its meaning and management. Interview recordings were transcribed and analysed using both content and thematic approaches. The findings enabled the development of a model of the experience of living with weight loss and advanced cancer. Findings: Distress was experienced when advanced cancer became visible through weight loss. Visible weight loss symbolised 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: This study has developed a new understanding of the experience of the weight loss that can accompany advanced cancer. The work is of importance because it leads to the proposition that weight loss related distress might be mitigated, if nurses adopt a proactive approach to the management of the symptom that breaks through the weight loss taboo.

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