Background

The concepts ‘pain’ and ‘suffering’ are frequently treated as synonymous. However, they are clearly distinct phenomena. Phantom phenomena including pain and sensory disturbances are still recognized as long-lasting problems after limb amputation and after mastectomy. The complex nature of phantom phenomena makes the interpretation of its results ambiguous, regarding the prevalence of pain, sensory disturbances and the accompanying suffering. There is clinical experience that suffering is a great burden for the individual but there is a lack of systematic studies of patients’ own evaluations of the suffering caused by their phantom phenomena.

Objectives

The overall aim of this study was to identify and describe patients’ suffering related to, and as a part, of their post-amputation situation.

Methods

The present study constitutes a part of a prospective, two-year follow up project investigating interviews of 28 men and women in different ages and who have undergone a limb amputation or mastectomy. The reason for amputation or mastectomy varied among the patients and included vascular diseases, cancer (sarcoma and breast-cancer) and trauma. Our ambition was to extract as much variations as possible in different, individualized aspects of the actual pain and suffering producing situation. The participants were, here, invited to open-ended, narrative-oriented interviews one month after the surgery. The interviews were transcribed verbatim and analyzed within qualitative methodology: thematic content analysis.

Results

Twenty-two of 28 interviewees experienced phantom pain and phantom sensations. The two surgical processes amputation and mastectomy meant for a majority of the interviewees a critical event with threatening consequences for everyday life such as loss of function and personal integrity. Nine interviewees felt even stigmatized as a result of their lost body part. Numerous inter-related factors following the amputation/mastectomy, which can inflict severe suffering on the amputee, were uncovered. The context in which the interviewees were informed about the decision to amputate proved to be one such critical and important factor.

Conclusion

To understand potential suffering in relation to phantom phenomena, it will never be enough merely to have knowledge of the underlying physiological or neurological mechanisms and/or the intensity of phantom pain and phantom sensations. Rather, it is necessary to find out how the loss of the body part and its everyday consequences are experienced by patients.

Implications

It is important to create time for real dialogue with the patients both during pre-operative preparation and post-operative rehabilitation in order to clarify and verbalize elements that constitute the patients individual suffering. Hopefully this strategy can alleviate future chronic pain problems, severe psycho-social distress and suffering. Such an approach ought to have impact also for perceived suffering after other types of surgery or different invasive treatments.