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The meaning and consequences of amputation and mastectomy from the perspective of pain and suffering – Lessons to be learned and relearned

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Veröffentlicht/Copyright: 1. Januar 2017
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In this issue of the Scandinavian Journal of Pain, Björkman et al. [1]present the third in a series of articles detailing patients’ descriptions of the effects of amputation of a limb or breast. The information is only from a small cohort of 38 subjects but the information is revealing. The use of interview and subsequent analysis for qualitative research adds a dimension lost in the more common research methods using quantitative measurements.This other dimension should ideally be explored with a comprehensive history taking in the clinic but if it is, a description of it is often lacking in the medical reports which focus on the “bio” aspect of pain – despite lip service to pain being a biopsychosocial phenomenon. If one listens closely to patients and inquires about their sensations, often they have problems distinguishing between pain and the emotional effects of something that is very unpleasant and intolerable but not exactly pain. This is particularly obvious in neuropathic pain. Thus, we need more information on what appears to be “non-bio” to help understand patients.

1 Measuring the emotional aspects of acute and chronic pain

Attempts have been made to add the emotional dimension of pain to standard quantitative research, most notably with the McGill Pain Questionnaire (MPQ) [2]. Some of this history is covered in this article. The inspiration for the MPQ actually was Ronald Melzack’s experience interviewing a single woman describing phantom limb pain and her eloquent expression of not only pain but the emotional consequences of the pain, the loss of her leg and her changed life [3]. As Melzack has clearly pointed out, symptoms associated with pain have both sensory and affective components and both are important to different degrees to explain the suffering experienced by individuals with acute and chronic pain.

2 Pain is a phenomenon distinct from suffering

In the first two articles by Björkman et al., they concentrated initially on the phantom phenomenon [4, 5], the sensations and the consequences of having a phantom of the lost body part. In this third article, Björkman et al. go further to explore how patients after amputation attach meaning to the loss of a body part, and how this influences the experience of pain and suffering. The focus was to separate the components of pain and suffering which often are considered as a single phenomenon. As Björkman et al. indicate, pain is a phenomenon distinct from suffering and, in this case, pain and the sense of loss which also involves a person’s identity, both influence the degree of suffering experienced by the subjects.

3 Qualitative research is necessary for better understanding of biopsychosocial aspects of pain and suffering

This and the previous articles by Björkman et al. are important to demonstrate that quantitative research loses much that may be more important to patients with pain than we can explain with a numerical or visual rating scale.To focus only on pain as a sensation and perhaps assess function often misses what is most important to patients. Many patients with relatively high levels of pain manage life rather well and do not visit pain clinics or consume large doses of pain medications [6]. Some of this discrepancy could be explained by the fact that for many patients, i.e. those with arthritis, there is a very clear “bio” understanding of disease with radiographic evidence but in the case of phantom pain, the explanation is not so clear and perhaps this difficulty leads to more introspective reflection and suffering. New information on metacognitive therapy might help to explain this and lead to new treatments [7].

4 Outcome measures of chronic pain trials

IMMPACT has also attempted to help pharmacological research focus more on the psychosocial aspects of pain as well as the “bio”. Their publications of suggested Patient Reported Outcomes (PROs) for research have also been used in non-pharmacological studies and are a bridge between quantitative and qualitative research [8]. PROs are now in standard use for research in acute and chronic pain, both pharmacological and non-pharmacological and some of these PRO’s are more qualitative adjuncts to the more “bio” oriented outcomes.

5 Common aspects of limb-amputation and mastectomy

An interesting aspect of the Björkman et al. research is that they have combined the experiences of those with limb amputation and breast amputation in the same study. The small numbers are not suitable for analysis to see if the experiences are different between the two groups but the data here are some indication that there are common threads in both. This is important since limb amputation is a more visible phenomenon and women with breast amputation are usually felt not to have similar problems with phantom sensations/phantom pain since their loss is not obvious. Ignoring the suffering and other non-“bio” aspects of breast amputation is not helpful. The focus on cancer, the usual reason for breast amputation, allows the healthcare system to minimize symptoms which might be equally or even more important to women having breast surgery.

6 A strong need for information prior to amputation

A significant point made by Björkman et al. is that subjects relate a strong need for adequate information on phantom symptoms and phantom pain prior to surgery and report easier adaptation to life after the amputation with consistent follow-up that addresses these symptoms.

7 The grieving over a lost body part, revival of Kolb’s postulate [9, 10]

In this article, Björkman et al. also come back to an old concept, that of grieving and phantom sensations/phantom pain. In the 50’s, a young psychiatrist trained as a Freudian analyst submitted a paper on phantom limb pain to the Proceedings of the Mayo Clinic. He later went on to a long successful carrier and became Professor of Psychiatry at Columbia University in New York. His name was Laurence Kolb and he also co-authored a textbook on psychiatry used in many medical schools. Kolb had an explanation for phantom limb pain when it was considered a psychiatric problem since no “bio” explanation was available. He postulated that phantom sensations including pain were due to “the mind grieving over a lost body part” [9, 10]. This could be treated by psycho-analysis which Kolb used for patients with phantom limb pain. When a neurophysiological explanation for phantom pain came into existence, Kolb’s ideas were rejected as non-scientific. Here, with the use of qualitative research analyzing patient interview, we find the Kolb was not so wrong after all. The “bio” explanation clearly had lost much in ignoring the meaning of phantom limb sensations and phantom limb pain that is important to explain suffering.


DOI of refers to article: http://dx.doi.org/10.1016/j.sjpain.2016.09.012.



Pain Center, Akademiska Sjukhuset, 751 85 Uppsala, Sweden. Fax: +46 18 503539.
stevmarg@telia.com
  1. Conflict of interest: None declared.

References

[1] Björkman B, Lund I, Arnér S, Hyden L-C. The meaning and consequences of amputation and mastectomy from the perspective of pain and suffering. Scan J Pain 2017;14:98–9.Suche in Google Scholar

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[5] Björkman B, Arnér S, Lund I, Hydén L-C. Adult limb and breast amputatees’ experience and descriptions of phantom phenomena – A qualitative study. Scan J Pain 2010:43–9.Suche in Google Scholar

[6] Observational data from the HUNT-pain examination study not yet reported.Suche in Google Scholar

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[8] Turk DC, Dworkin RH, Revicki D, Harding G, Burke LB, Cella D, Cleeland CS, Cowan P, Farrar JT, Hertz S, Max MD, Rappaport BA. Identifying important outcome domains for chronic pain clinical trials: an IMMPACT survey of people with pain. Pain 2008;137:276–80.Suche in Google Scholar

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[10] Personal communication.Suche in Google Scholar

Published Online: 2017-01-01
Published in Print: 2017-01-01

© 2016 Scandinavian Association for the Study of Pain

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