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

2.1 Study design

The current study constitutes a part of a prospective, explorative, two-year follow-up project investigating men and women who have undergone a limb amputation or mastectomy.This study-project used open-ended, narrative-oriented interviews which were performed at four occasions: one month, six months, one year, and two years after the surgery. The first author performed all interviews. The interviews explored how the study participants talked about their phantom experiences [26, 40, 46], and constituted the main data source for all studies.

2.2 Study participants

The potential study participants were recruited consecutively during a period of 16 months, among amputated patients at a tertiary university hospital in an urban area. The patients’ circumstances were categorized as follows: (i) amputation related to complications of diabetes mellitus and vascular disease (from the endocrinology clinic); (ii) amputation related to cancer disease (from the orthopaedic, oncology and breast-surgery clinics); and (iii) amputation necessitated by trauma (from general-surgery, orthopaedic, anesthesiology and intensive-care clinics) (Table 1). The purpose of including patients with different causes of amputation in a wide range of age and with both genders represented was to extract as much variations as possible in different, individualized aspects of the actual pain-producing situation.

The patients were selected in cooperation with coordinators from the medical units involved. Inclusion criteria were: (i) Swedish-speaking adult men and women; (ii) aged 18–80 years; and (iii) undergoing their first amputation. Participants who were assessed as medically or mentally unstable and who were participating in other studies were excluded.

To avoid preconceptions, the interviewer did not check the present medical records prior to the interviews or during its analyses. Clinical characteristics were gathered during the interviews. Only results associated with data from the patients one month after an amputation/mastectomy were analyzed and presented in the current study.

The Regional Ethics Committee of Karolinska Institutet approved the study (Dnr 01-289). Potential study participants received documentation on the study’s objectives, an outline of the type of information being sought, and details used to ensure anonymity. They also received a clear statement regarding the voluntary nature of participation. All of those who agreed to participate also gave their verbal, informed consent.

2.3 Data collection

The open-ended questions focused on four general topics: the presence of phantom sensations and/or phantom pain and its perceived qualities; the presence of other types of pain; amputation as a life event, and living with the loss of a body part. The interviews were tape-recorded and transcribed verbatim by the first author (non-verbal communication such as sighs and pauses were omitted). Since the aim was to search for a model to describe ‘suffering’ in a conceptual form [47], thematic content analysis [48, 49, 50] was selected as an appropriate method for systematic coding of the content from the transcribed texts. Content analysis can enable researchers to develop content-related categories from the full-length texts and phrases. Inductive content analysis is used when previous knowledge about a phenomenon is deficient or fragmented [47]. This type of content analysis allows systematic comparison of differences between individuals and also individual differences/changes over time [48, 51].

2.4 Data analysis

The patients’ responses to the open-ended questions were coded. The analysis took place incrementally in analytical steps. First the patients’ descriptions of phantom phenomena and their consequences to sociocultural factors of note, and descriptions of attitudes and expectations, were coded as themes and about 50 themes were identified as relevant. From these themes 43 content categories were uncovered and deemed adequate for the purpose of the study. To permit intra- and inter-individual comparisons, the contents of some of the categories were graded into either variations of intensity or differences in phrasing (e.g. totally or partly). Finally, out of this information a Coding Form was constructed to cover all the adequate categories, and used for coding all the interviewees’ response categories [46]. The analysis focused on the categories in the Coding Form that dealt with sociocultural factors, attitudes to and expectations concerning the amputation. Not only the numbers of ‘yes’ or ‘no’ given to each category were noted but also when the category in question wasn’t mentioned at all it became accounted. In getting a true estimation about the extent to which the analytic categories appear in the content are both the relative emphases and omissions equally important [48]. To try and retain an individual perspective within the patients’ anonymity they were ‘encoded’ with the numerical sequences they received when entering the study (Tables 1 and 2). During the whole analysis process (preparation; organization, and reporting), current material was estimated by the four researchers through rigorous reading. Emerging problems or uncertainties were resolved through collective and critical discussion. The researcher had different scientific knowledge and comprehensive experience specific to their specialities– each adequate and complementary for the aim of the study.

3.1 Descriptions of the amputation/mastectomy– meaning and pre operative experience

In describing whether and how interviewees had been enabled to prepare themselves mentally for the consequences of a physical loss of the body part, the interviewees outlined the course of their disease and their experience of medical care as processes with different phases (Table 2).

In the pre-operative process, the context in which the interviewees were informed about the decision to amputate proved to be of critical importance. Sixteen interviewees described themselves as mentally prepared for physical loss of their body part. Most had experienced a relapse of an earlier cancer diagnosis and/or critical progress of vascular or cancer disease. All except one of these had received information preoperatively from the specialist responsible for their case concerning the reason for the amputation/mastectomy. Nine interviewees were not mentally prepared. Moreover, among these, all had received information about the upcoming amputation, but four from other medical specialists. One trauma amputee, for instance, received, information from an anaesthetist – after the amputation (Table 2). Most of the unprepared interviewees described their experience of decision-making and information-giving as situations of urgency and chaos. Also, at that precise moment, most of them were not at all ready for the decision to amputate. Four described both this information and how they had received it as traumatizing. Among the interviewees that were mentally prepared, only one described the information received as traumatic. The other interviewees were either satisfied or extremely satisfied with this situation (Table 2).

Support from medical staff was also described as a central factor in the situation. Twenty-two of the interviewees made some kind of evaluation of the support from the medical staff. Sixteen said they were totally or partly satisfied with both the medical/surgical procedure and the staff’s emotional support. Thirteen of the 22 interviewees that evaluated the support of the medical staff expressed some or considerable disappointment with the communication and/or the relationship with the staff during the amputation process (for instance, lack of communication among the care units involved, too much responsibility for their own care). The most serious criticism regarding lack of communication related to the amputation as a procedure were: six interviewees were troubled that some important investigation had been neglected; two of these directly expressed misgivings as to whether amputation really was the correct intervention (they were among those not prepared for amputation). In contrast, five interviewees explicitly described the medical staff as allies in the battle for recapturing an ordinary life. These five interviewees belonged to those that experienced themselves as being mentally prepared for the amputation.

3.2 Descriptions of the lost body part– meaning and post operative consequences

All the 28 interviewees narrated, to differing extents, about the lost body part: its physical function and its significance for their sense of personal integrity (identity) in their everyday life. For 19 of them, the descriptions of the lost part were related to at least one important everyday function. For 13 of those 19 the loss of function was described as very important, for six as important but less substantial and, for the remaining nine, no everyday function or its loss was related to the body part. Not unexpectedly seven of the women with breast cancer were in the latter group and five of them described breast loss as ‘only’ a loss of personal integrity. Only one woman related a loss of function as real to the loss of the breast (in the sexual interaction). Totally, 15 of the 28 interviewees described the importance of the lost body part for their own personal integrity. Ten interviewees related the loss of both physical function and sense of personal integrity directly to the loss of the body part.

Coincidentally, there were descriptions both of the interviewees’ attempts to compensate for their loss of function and or their personal integrity, respectively. Most of the descriptions were about some successful attempts (79% function and 53% personal integrity). A minority talked of their failure to recapture the lost capacity/integrity (11% and 20% respectively). In this group of amputees/mastectomized women, one month after the surgery, the experience of lost personal identity seemed to be the consequence for which compensation was toughest.

The loss of a body part related not only to the interviewee’s own attitudes to their truncated body but also to other persons’ attitudes. Nine interviewees reported misgivings about others’ reactions and for four of these their misgivings were intense. Thirteen of the 28 interviewees described predominantly positive or neutral reactions from other people, and only one had met negative reactions. Nine interviewees felt stigmatized as a result of their lost body part, five of these severely.

3.3 The meaning of social and relational consequences

All the interviewees described the various everyday consequences of their post-amputation situation as life-changing: changes in living conditions, the need for rehabilitation, the importance of a social network and emotional and social support from other people (Table 3).

Four interviewees evaluated the consequences of their lost body part as almost unmanageable. Two of them were also uncertain whether they would be able to return to their home environment. Especially those interviewees that experienced almost unmanageable problems in connection with their lost body part and uncertainties concerning their return to their present home described the rehabilitation as absolutely necessary for regaining an ordinary life. Three of them also emphasized the importance of the rehabilitation unit’s capacity to give them information about their new life situation.

Seven of the 16 retired interviewees described a real worsening of their life as pensioners. Those still working mostly hoped that the amputation would only imply a temporary break of work. The presence of a work created a foundation for hope. All who stressed the importance of their work described it as an important part of their personal integrity as well as a source of meaning and an opportunity to find distractions from the illness (Table 3).

The importance of both emotional and practical support from an understanding and benevolent environment were described by almost everyone. Access to confidence in a kind and close family relationship seemed of great value. Several of the interviewees stressed the importance of grandchildren. Six of those still working also commented on the presence or absence of support from their workplace. They described support from good and understanding workmates and management alike. A third of the interviewees experienced their social support as more restricted. Three of these judged their network as limited but benevolent, but two judged it as almost non-existent, and emphasized their own lack of children and/or siblings (Table 3).

3.4 Different attitudes, emotions and strategies for handling the new life situation

All the interviewees except two women described their attitudes towards the disruption of their life caused by the amputation. Three sets of attitudes were identified: (i) the need to adapt (totally or partly) to the new situation; (ii) defining the amputation as a challenge to be mastered (totally or partly); and (iii) a total inability to adapt to the new situation brought about by the amputation. A majority of the interviewees could describe, coincidentally, the need to adapt and the possibility to be challenged. All included some emotional descriptions when they described the consequences of their new life situation: acceptance, reassurance, sorrow, despair, malaise, depression, guilt or even rebellion. Often, they mentioned several components together.

The interviewees described in total 22 different strategies they used to handle their new life situation. Three different categories of strategy were identified: making the situation comprehensible, manageable and or meaningful. Twenty interviewees mentioned, coincidentally, strategies belonging to all three categories.

Depending on the interviewees’ tendency to grade their attitude, four different groups were apparent and individual disparities were related at group level:

1. Thirteen interviewees described their attitude as both an adaptation and a challenge. They all described their reactions as acceptance and/or reassurance. No other emotions were described.

2. Ten interviewees described their attitude only as an adaptation. Their descriptions of the emotions were both miscellaneous and unmistakably sad. Howsoever, acceptance and/or reassurance could be mentioned; the reactions most often used were: guilt and/or sorrow, malaise, despair and depression.

3. All the three interviewees in the described attitude of challenge emphasized reassurance as their only emotion.

4. The two women with no description of alternative attitude before their current situation arose described both sorrow and malaise, but one of them also accentuated rebellious feelings.

4.1 Limitations and methodological considerations

The design of the present study does not permit, and was not intended to, to identify and account for the primary causal factors within the association of pain and suffering. There were not any hypotheses to prove. Rather, the ambition within our design was, to create a context, which through the interviewees’ descriptions and narratives, in an elucidated way entailed a meaningful pattern on what otherwise, is random and disconnected: the meaning of pain and suffering.

The purpose of including patients with different causes of amputation in a wide range of age and with both genders represented was, therefore, to extract as much variations as possible in different, individualized aspects of the actual pain-producing situation. Howsoever, the interviews were conducted in a very structured way; the thematic content analysis of interviews from 28 individuals creates a large volume of textual data, which have to be analyzed repeatedly of the researcher. Different and meaningful textual sources can then be uncovered and dealt with in a corroborating way.

When interpreting the significance of these results it should be noted that the interviews took place rather early in the postamputation phase, which of course influenced the interviewees’ attitudes and evaluations. That does not necessarily imply any limitations in the value of the results. As pointed out by Toombs, patients’ descriptions of their illness experience are never to be seen as “a temporal entity”. When humans describe their illness-experience, there is an inherent dynamic mix of present and retrospective experiences based on memory. It is up to the professionals to understand and respect this temporal constituent in their patients’/interviewees’ narration [61]. Thus, there also exists a risk for under-as well as over estimation of the reported pain experiences when e.g. a visual analogue scale or a structured pain-questionnaire is the only instrument for evaluation.

The opportunity for the interviewees to discuss their phantom phenomena and other pain problems at the interviews might have influenced their experience positively, leading them to tone down the distress of the phantom pain.

Another aspect to consider is that all participants were recruited from university hospitals within a conurbation. They had had surgery at high-specialized units which used surgical techniques with the aim to reduce the negative consequences of the surgical procedures. Furthermore, at those hospitals there were established guidelines for how to manage post-surgical pain. Such structural factors could be of great importance for how the patients experience and describe their situations.

However, the present study design allowed evaluation of the patients’ individual ways of describing the meaning of both their experience of phantom phenomena, co-existing pain conditions and sensory disturbances in the context of amputation. The findings of the interviews have also generated new thoughts within this field, for example: it is not only after a regular trauma an amputation or a loss of a body part became experienced as traumatic. Such findings could further form a base for further and longitudinal studies of this kind of problem.

4.2 Clinical implication

The present study indicates that it is important in clinical practice to take into account the multiplicity of inter-related factors apparently operating following amputation/mastectomy which together can inflict severe suffering on the amputee. When searching for understanding of potential suffering in relation to phantom pain and or phantom sensations, merely having knowledge of the neurobiological mechanisms underlying the pain or the intensity of the phantom phenomena, will never be enough [62, 63]. Rather, it is necessary to find out how the meaning of the phenomena and their everyday consequences are experienced by the patients. To help the patients after amputation/mastectomy with visualizing and verbalizing elements that for him/her constitute individual suffering can alleviate or possibly prevent future chronic pain problems and severe psycho-social distress.