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Terminal illness and body image

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VOL: 98, ISSUE: 14, PAGE NO: 36

Rob Newell, PhD, BSc, RGN, RMN, RNT, CertBehavPsych, is professor of nursing research, school of health studies, University of Bradford

Body image is at the heart of the way people see themselves and has been described as crucial to the development of self-concept (Bronheim et al, 1991). It is easy, therefore, to see how a threat to a person's body image also threatens his or her psychological well-being.

Body image is at the heart of the way people see themselves and has been described as crucial to the development of self-concept (Bronheim et al, 1991). It is easy, therefore, to see how a threat to a person's body image also threatens his or her psychological well-being.

Mutilating surgery can have a profoundly negative effect on body image and raises the issue of how such patients should be cared for. Should they, for example, be encouraged to confront their disfigurement, and can the process of reflection provide some answers?

Mark Wareing's case study (p34) details the effect of mutilating surgery on a patient with penile cancer and describes the care of a terminally ill patient who, after successive mutilating operations, was disfigured and had impaired bodily functions.

Such cases raise two important issues: potential disruption of the body image and how this interacts with the challenge of facing death, which is perhaps the ultimate threat to the integrity of the body.

There is little research on body image disturbance outside the field of mental health, so it is not surprising that the specialised area of body image disturbance at the end of life has not been systematically investigated.

The role of avoidance
There is general consensus among commentators in the field that avoidance tactics usually lead to poor outcomes in terms of patient well-being. A fear-avoidance model of psychological difficulty after disfigurement (Newell, 1999) predicts that avoiding actions and thoughts associated with the disfigured area lead to poor psychological adjustment. There is a growing body of evidence to support this theory.

Similarly, in cancer nursing it has been suggested that confrontation of the disfigured area is associated with adaptation and reintegration of the body image (Dropkin and Scott, 1983; Dropkin, 1989).

The need for confrontation is echoed by Price (1990), whose model of body image and its disturbance favours frank and modified coping styles. Yet Price still sees some value in palliative coping strategies and the immediate relief they afford.

Dropkin (1989), Newell (1999) and James Partridge (1990), who became the UK's leading lay writer on disfigurement and founded the charity Changing Faces after being burned in a car fire, see little value in the avoidance often inherent in palliative coping.

What do patients' experiences tell us about coping with mutilation?
In spite of his deteriorating condition, the patient in Wareing's case study continued to smoke. He also chose not to get dressed during the day, and wore a dressing gown instead. Were his actions not adaptive but palliative in the sense described by Price (1990)? Or were they a means of avoidance, as I have suggested (Newell, 1999)?

At face value, wearing a dressing gown all day might be associated with adopting the role of the sick patient, with the implication of being excused from certain responsibilities. However, the patient's stated motive - that it was easier to gain access to his urine and stoma bags - should be taken into account. Not only is this motive practical but it could also be seen as the patient confronting his difficulties by making it easier to perform self-care tasks - the opposite of palliation in Price's (1990) terms or avoidance in my proposition (Newell, 1999).

Similarly, journalist and author John Diamond's (1998) account of resuming smoking explains how this apparently maladaptive palliative activity may be sustaining for the self by letting patients revisit periods in their life when they were able to cope.

The generation of such coping images is widely regarded as being associated with better adjustment in a wide range of psychological difficulties. Dryden and Golden (1986) provide an overview of such approaches, while Fonagy and Roth (1996) review the effectiveness of treatment.

Is confrontation essential?
Another question arising from Mark Wareing's case study relates to the need for confrontation. It has been suggested that confrontation leads to better adjustment (Dropkin, 1989; Newell, 1999), but their studies did not include patients who were terminally ill. For such patients, the need to confront their disfigurement may not be a priority.

Patients who are facing death are forced to confront their mortality, so confronting their disfigurement in the ways recommended (Dropkin, 1989; Newell, 1999; Price, 1990) may not be as important.

In describing their approaches to body image and its disturbance, these commentators aim to ensure satisfactory psychological functioning in the long term. At the end of life, these long-term considerations may be of less value than more immediate issues of convenience, comfort and peace. Ultimately, it is the patient who decides.

All three approaches to adequate adjustment after disfigurement emphasise the notions of respect for the patient's goals and negotiating with them on the best way to achieve these. In clinical practice, these twin processes are as important as the theory underpinning any particular approach to body image.

Reflection, confrontation and anxiety
It has been argued that reflecting on practice is limited by the natural tendency to avoid material that generates anxiety (Newell, 1992). Nowhere is this likely to be more profound than when reflecting on threats to the body and the self, as in Wareing's case study.

Nurses are no different, and situations that cause us profound doubts about our bodies, ourselves and our mortality give rise to deep feelings. We should not be surprised if we find ourselves shying away from too careful consideration of what our behaviours and attitudes in such situations say about us. This unwillingness to confront disquieting feelings may seriously compromise our ability to learn from our own experiences or those of others.

This is not to say that reflection is impossible or without value. However, it may be both if we are not cautious and do not question our involvement in it, particularly in emotionally charged situations where there is great potential to avoid frank coping and confrontation in our reflective style. For reflection to be effective we must remain as true to the patient's account as possible because our interpretations essentially reflect our own experiences and preferences.

- See next week's issue for the start of Professor Newell's two-part series on body disfigurement: nursing interventions

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