The meaning and consequences of amputation and mastectomy from the perspective of pain and suffering.

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.

Phantom phenomena - Their perceived qualities and consequences from the patient's perspective.

Background and aim The curious phenomenon phantom limbs early became the object of research, and its underlying mechanisms have been discussed over the years. The complex nature of phantom phenomena makes interpretation of the results ambiguous, regarding both prevalence and the accompanying suffering. There is a lack of knowledge about how amputees experience the meaning and consequences of phantom phenomena. The present aim, therefore, was to investigate how individuals, in an interview situation, described the qualities of possible perceived phantom phenomena, and how their experience affected their lives one month after the amputation/mastectomy. Methods Twenty-eight women and men who had undergone a limb amputation or mastectomy were interviewed. The focused, narrative-oriented interviews were transcribed verbatim and the scripts were analysed with content analysis. Results One month after the amputation the informants described and related their phantom pain and phantom sensations in sensory-discriminative, motivational-affective and cognitive-evaluative dimensions. The phantom sensations were experienced mainly as more agonizing than the phantom pain. Despite both the high intensity of and the high annoyance at the phantom pain and phantom sensations, a majority felt that the phantom phenomena were not a hindrance in their attempts to recapture ordinary life. But when the hindrance was evaluated as high, the annoyance was evaluated as the highest possible for both phenomena or for the phantom sensations alone, never for phantom pain alone. The interviewees' reported attitudes of hindrance were also described and estimated in the light of their sociocultural circumstances. Thus, other preceding and/or co-existent pain conditions as well as factors such as pre-operative information, the respondents' views on pain treatment, and their knowledge and understanding of phantom phenomena were mentioned and related to the pain-producing situation. Two-thirds of the interviewees had received post-surgical information and for some, the phenomena were well-known from earlier experience. A majority applied some version of the medical explanation model, irrespective of age or level of education. However neither information nor medical explanation, or both, sufficed for them to understand their own phantom phenomena. Thus, differences between the concepts explanation and understanding seemed significant for the annoyance related to the phantom phenomena. Regarding background data (i) the majority of the interviewees had had pre-amputation pain problems; (ii) the breast-cancer phantoms differed in several ways; (iii) there were some age and gender differences in the descriptions of hindrance. Conclusions and implications These findings highlight the importance of observing the individual approach to the phenomena as a process of evaluation and selection. In addition, experience and understanding of the phantoms also have sociocultural aspects. There follows the need for individualized communication and information from the clinician, and for incorporating a socioscientific and meaning-centred approach in future studies. The present insights could also be of value in other iatrogenic pain conditions.

Adult limb and breast amputees' experience and descriptions of phantom phenomena-A qualitative study.

Background Phantom phenomena - pain or other sensations appearing to come from amputated body parts - are frequent consequences of amputation and can cause considerable suffering. Also, stump pain, located in the residual limb, is in the literature often related to the phantom phenomena. The condition is not specific to amputated limbs and has, to a lesser extent, been reported to be present after radical surgery in other body parts such as breast, rectum and teeth. Multi-causal theories are used when trying to understand these phenomena, which are recognized as the result of complex interaction among various parts of the central nervous system confirmed in studies using functional brain imaging techniques. Functional brain imaging has yielded important results, but without certainty being related to phantom pain as a subjective clinical experience. There is a wide range of treatment methods for the condition but no documented treatment of choice. Aims In this study a qualitative, explorative and prospective design was selected, in the aim to understand the patients' personal experience of phantom phenomena. The research questions focused at how patients affected by phantom pain and or phantom sensations describe, understand, and live with these phenomena in their daily life. This study expanded 'phantom phenomena' to also encompass phantom breast phenomenon. Since the latter phenomenon is not as well investigated as the phantom limb, there is clinical concern that this is an underestimated problem for women who have had breasts removed. Methods The present study forms the first part of a larger, longitudinal study. Only results associated with data from the first interviews with patients, one month after an amputation, are presented here. At this occasion, 28 patients who had undergone limb amputation (20) or mastectomy (8) were interviewed. The focused, semi-structured interviews were recorded, transcribed, and then analyzed using discourse-narrative analysis. Results The interviewees had no conceptual problems in talking about the phenomena or distinguishing between various types of discomfort and discomfort episodes. Their experience originated from a vivid, functioning body that had lost one of its parts. Further, the interviewees reported the importance of rehabilitation and advances in prosthetic technology. Loss of mobility struck older amputees as loss of social functioning, which distressed them more than it did younger amputees. Phantom sensations, kinetic and kinesthetic perceptions, constituted a greater problem than phantom pain experienced from the amputated body parts. The descriptions by patients who had had mastectomies differed from those by patients who had lost limbs in that the phantom breast could be difficult to describe and position spatially. The clinical implication of this study is that when phantom phenomena are described as everyday experience, they become a psychosocial reality that supplements the definition of phantom phenomena in scientific literature and clinical documentation. Conclusions There is a need for clinical dialogues with patients, which besides, providing necessary information about the phenomena to the patients creates possibilities for health professionals to carefully listen to the patients' own descriptions of which functional losses or life changes patients fear the most. There is a need for more qualitative studies in order to capture the extreme complexity of the pain-control system will be highlighted.

Phantom breast and other syndromes after mastectomy: eight breast cancer patients describe their experiences over time: a 2-year follow-up study.

UNLABELLED: Patients often experience hard-to-treat neuropathic pain and other sensations after surgery; consequently, they could develop chronic pain conditions. The phantom limb phenomenon is a well-documented postoperative pain condition. However, phantom phenomena after mastectomies are less documented. The reviews report several views on the prevalence of breast phantoms and coexisting distress. Researchers observed that new methodological approaches might facilitate further research of these issues. This prospective, qualitative study used semistructured interviews to acquire knowledge of if and how phantom breast phenomena appear within the range of other postmastectomy symptoms and sensations. The study revealed that a phantom breast could be difficult to describe and position spatially. The phantom breast phenomenon varied from classic phantom extremity phenomenon and did not seem to cause much distress. However, it proved to be a phenomenon so unknown and different that there is urgent need for more knowledge. This study highlights the importance of further investigation regarding how information and communication related to a phantom breast might be developed. PERSPECTIVE: The phantom breast is only one piece of a complicated puzzle. Because it was relatively unknown for the women in the study, it is important that analyses of this phenomenon, as a part of a postmastectomy syndrome, be conducted in a dialogue with the patients, by scientifically using qualitative methods.

Gabapentin in traumatic nerve injury pain: a randomized, double-blind, placebo-controlled, cross-over, multi-center study.

A double-blind, randomized, placebo-controlled cross-over multi-center study was conducted to evaluate the efficacy and safety of gabapentin in the treatment of neuropathic pain caused by traumatic or postsurgical peripheral nerve injury, using doses up to 2400 mg/day. The study comprised a run-in period of two weeks, two treatment periods of five weeks separated by a three weeks' washout period. The primary efficacy variable was the change in the mean pain intensity score from baseline to the last week of treatment. Other variables included pain relief, health related quality of life (SF-36), interference of sleep by pain, Clinician and Patient Global Impression of Change, and adverse effects. Nine centers randomized a total of 120 patients, 22 of whom withdrew. There was no statistically significant difference between the treatments for the primary outcome efficacy variable. However, gabapentin provided significantly better pain relief (p=0.015) compared with placebo. More patients had at least a 30% pain reduction with gabapentin compared with placebo (p=0.040) and pain interfered significantly less with sleep during gabapentin treatment compared with placebo (p=0.0016). Both the Patient (p=0.023) and Clinician (p=0.037) Global Impression of Change indicated a better response with gabapentin compared with placebo. Gabapentin was well tolerated. The most common adverse effects were dizziness and tiredness.

Breakthrough pain in malignant and non-malignant diseases: a review of prevalence, characteristics and mechanisms.

Breakthrough pain or transient worsening of pain in patients with an ongoing steady pain is a well known feature in cancer pain patients, but it is also seen in non-malignant pain conditions with involvement of nerves, muscles, bones or viscera. Continuous and intermittent pain seems to be a general feature of these different pain conditions, and this raises the possibility of one or several common mechanisms underlying breakthrough pain in malignant and non-malignant disorders. Although the mechanisms of spontaneous ongoing pain and intermittent flares of pain (BTP) may be difficult to separate, we suggest that peripheral and/or central sensitization (hyperexcitability) may play a major role in many causes of BTP. Mechanical stimuli (e.g. micro-fractures) changes in chemical environments and release of tumour growth factors may initiate sensitization both peripherally and centrally. It is suggested that sensitization could be the common denominator of BTP in malignant and non-malignant pain.

Existential pain--an entity, a provocation, or a challenge?

"Existential pain" is a widely used but ill-defined concept. Therefore the aim of this study was to let hospital chaplains (n=173), physicians in palliative care (n=115), and pain specialists (n=113) respond to the question: "How would you define the concept existential pain?" A combined qualitative and quantitative content analysis of the answers was conducted. In many cases, existential pain was described as suffering with no clear connection to physical pain. Chaplains stressed significantly more often the guilt issues, as well as various religious questions (P<0.001). Palliative physicians (actually seeing dying persons) stressed more often existential pain as being related to annihilation and impending separation (P<0.01), while pain specialists (seeing chronic patients) more often emphasized that "living is painful" (P<0.01). Thirty-two percent (32%) of the physicians stated that existential suffering can be expressed as physical pain and provided many case histories. Thus, "existential pain" is mostly used as a metaphor for suffering, but also is seen as a clinically important factor that may reinforce existing physical pain or even be the primary cause of pain, in good agreement with the current definition of pain disorder or somatization disorder.

Pain questionnaires in the analysis of long lasting (chronic) pain conditions.

A study on mainly non-cancer-related pain patients was performed concerning clinical patient data used for pain history-taking and diagnosis. More than 2100 consecutive patients referred to the anaesthetic branch of the Multidisciplinary Pain Centre (MPC) were evaluated at the first visit. The use of a paper questionnaire, including a pain-drawing and pain intensity Visual Analogue Scale (VAS), was analysed. In a substudy of more than 290 consecutive patients, data from a computerised questionnaire and database was analysed. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaires (EORTC QLQ-C30) (version 2.0) was used for recording of the Global Health Status/Quality of Life (GHS/QoL) score. The substudy also included the summarized mechanism-based evaluation of the patients at the first visit, judged by a specialist in pain medicine. The patients' GHS/QoL score was low. The most important pain mechanisms, were nociceptive and peripheral neurogenic. The clinical use of these tools for patient evaluation and for the choice of treatment is suggested. Information technology may be used for analysis of descriptive, evaluative, predictive and prognostic data in pain patients. It can also be used as a tool for clinical pain research towards a mechanism-based evaluation. Evaluation of patient quality of life and function is suitable for outcome research.

Intravenous phentolamine test: diagnostic and prognostic use in reflex sympathetic dystrophy.

In some patients, ongoing and evoked neurogenic pain is relieved by pharmacological or destructive block of the sympathetic innervation of the affected part. In others, sympatholysis is ineffective. The present report shows that these two groups of patients can be distinguished by a safe and simple diagnostic test. Individuals in whom the pain was transiently relieved by intravenous phentolamine (Regitine) were very likely to respond favourably to subsequent sympatholytic treatment with i.v. regional guanethidine. Individuals in whom the phentolamine test was negative did not enjoy pain relief from this type of sympatholysis.

Prolonged relief of neuralgia after regional anesthetic blocks. A call for further experimental and systematic clinical studies.

Thirty-eight consecutive patients with neuralgia after peripheral nerve injury were treated with one or two series of peripheral local anesthetic blocks. All patients experienced an initial total relief of ongoing pain for 4-12 h. Evoked pain (hyperalgesia or allodynia), which occurred in 17 patients, was blocked simultaneously with the spontaneous pain. In 18 patients the analgesia outlasted the conduction block and there was a period of complete pain relief of 12-48 h in 13 patients and of 2-6 days in the other 5. In 8 patients there was a second phase of analgesia of 4 h to 6 days duration occurring within 12 h of pain recurrence. Thus, mono- or biphasic prolonged complete analgesia occurred in 25 out of 38 patients. A prolonged analgesia may be the result of a central action of the local anesthetic at the spinal level after intra-axonal incorporation and centripetal axoplasmic transport. To test this hypothesis, an experimental study with [3H]lidocaine was performed in 6 rats. The radioactive local anesthetic was injected into one hind limb foot with the other side serving as a control. Tissue samples from the peripheral nerve, nerve root and the lumbosacral spinal cord segment were analyzed for radioactivity using a scintillation counter technique at various time intervals after the [3H]lidocaine injection. There was a low grade of activity in all samples and no difference between the test side and the control side. Thus these experiments provided no evidence in support of this hypothesis. Various alternative peripheral and central mechanisms are discussed. Further studies specifically directed to these alternatives and with longitudinal controls are prompted.