“One of the best decisions I ever made was to have an amputation.” Although this statement may seem surprising, it has been expressed by many patients who have had a functionally impaired lower extremity. In sharp contrast, other patients refuse amputation. Few studies have considered these dichotomous positions. Some studies have indicated that patients would have preferred an earlier amputation1,2, whereas others have suggested the opposite3,4. Research has not explored the reasons behind these conflicting views.
The choice between amputation and reconstruction is complex. Following Gustilo Type-IIIb and IIIc tibial fractures, patients who undergo limb reconstruction have more surgical procedures, more complications, more rehospitalizations, and longer rehabilitation than those who undergo an amputation1-9. Outcomes are similar in terms of pain, quality of life, and function2-4,7,9-11. Although a few studies have favored amputation2,7, most have demonstrated no difference in terms of the ability to return to work3-6,8,12.
It seems reasonable, therefore, that some patients would choose amputation. However, outcomes are not so clearly in favor of amputation that it should be recommended as the preferred treatment. As there is often no clear medical recommendation, patients are faced with making a decision that is a very personal one.
Little is known about the decision-making process of patients who choose to undergo amputation of a functionally impaired limb. Research on health-care decision-making has suggested that patients make choices by drawing on experiences from their own and their family's health or by consulting with their friends or physicians13. Decision-making is a collaborative process between patients and their physicians14. This collaborative process is especially important in preference-sensitive decisions where there is limited evidence to recommend a specific treatment15. As treatment options will have risk-benefit profiles that patients value differently16, their values and preferences must be elicited to maximize the likelihood that they will be satisfied with the outcome14.
What are the subjective values and preferences that should be discussed with patients deciding whether to undergo amputation of a poorly-functioning limb? Quantitative studies provide us with knowledge of the problems experienced by these patients, but they fail to explain why patients chose a particular treatment. How can physicians act as informed decision-making collaborators when research has yet to explore these important considerations? The purpose of the present study was to address this knowledge gap by undertaking a qualitative investigation of the experiences of patients who elected to undergo amputation of functionally impaired lower limbs. In contradistinction to quantitative research, qualitative research provides a method for developing a deeper understanding of complex human and social phenomena. The how and what questions about a human experience are particularly suited for exploration through qualitative research17. This knowledge should allow physicians to more effectively counsel patients faced with this decision.
Setting and Sampling
Participants were recruited from the amputee clinic at an urban, Canadian, tertiary care rehabilitation center that manages the amputee rehabilitation for all individuals in the region (population, 1.2 million) who use or will use a prosthesis. To be included in this study, a patient (1) had to have had an elective amputation of a functionally impaired lower limb more than one year previously and (2) had to be English-speaking. An amputation was considered to be elective if it was not necessary in order to save the person's life or to prevent deterioration of a health condition. A functionally impaired lower limb was defined as a lower limb that limited the individual's capacity to perform everyday activities. The criterion stipulating that patients had to have undergone the amputation more than one year previously ensured that participants had completed their rehabilitation.
Clinic records identified 1341 patients with lower extremity amputations. After chart review, fourteen patients appeared to meet the inclusion criteria. Three of these patients had died. Invitation letters were sent to the remaining eleven patients, and ten agreed. Two participants were excluded after the interview revealed that the amputations had not been elective. Therefore, eight of a possible nine patients participated. The study was approved by the local research ethics board.
Data Collection and Analysis
One-on-one semi-structured interviews18, consisting of one open-ended question with follow-up prompts, were conducted (see Appendix). The participants were asked to tell how they came to the decision to have an amputation and to describe the outcome. This structure allowed participants to describe their unique decision-making process and the pieces of their story that they considered to be important. By not dividing the question into segments, we sought to capture the participants’ lived experiences without imposing our biases and assumptions. Once the participants completely narrated their story, the interviewer asked prompting questions to encourage the participants to reflect on factors that we thought, on the basis of professional experiences and literature findings, would be important. Interviews lasted forty to sixty-two minutes (total for all interviews, 400 minutes of data). Interviews were audio recorded, transcribed verbatim, and rendered anonymous (total for all eight participants, 146 pages of data).
With use of the qualitative research method of narrative analysis19,20, recurrent key themes and patterns were identified. All transcripts were analyzed by three researchers (D.L.Q., N.L.D., M.B.), providing triangulation21. A coding scheme was collaboratively created on the basis of key themes and patterns that were identified as being common across all transcripts. In qualitative research, data collection is considered to be complete when dominant themes are recurrent and no new issues arise with subsequent data collection17. This is referred to as theme saturation. In our study, theme saturation was reached after six interviews, but the full set of eight interviews was analyzed. Discrepancies between the analysts were resolved through discussion until consensus was achieved. The coding scheme was then applied to the entire data set.
Source of Funding
There was no external funding for this study.
Six men and two women participated. All patients identified an initiating event that resulted in the impairment of a lower extremity. Events included trauma (six patients), poliomyelitis (one patient), and a Charcot foot (one patient). All patients had a transtibial amputation. No differences were noted between the participants with poliomyelitis or a Charcot foot and those with trauma as the initiating event. However, as there was only one individual in each of the former two categories, we present only the results for the six patients with trauma as the initiating event. Table I lists the ages of the six participants at key time points and the time intervals between key time points.
The decision-making processes for all participants followed a common timeline structure, although the lengths of each phase differed. Figure 1 depicts this timeline along with the factors that participants considered in the decision to undergo amputation.
Personal Factors in Decision-Making Process
Factors with Maximum Influence
All participants described three key factors in their decision to have an elective amputation: pain, function, and participation.
Pain:
All participants experienced limb pain preoperatively, and pain was often the key reason for their decision. Although many participants had been living with daily pain for several years, an increase or change in pain was often a reason for considering amputation. The inability to withstand ongoing pain often prompted participants to seek solutions. Many thought that removal of the limb would relieve the pain. Comments included “The pain was getting worse… it made you feel like you wanted to vomit all of the time” (Participant 4) and “If you got a toothache, what do you do? You go to the dentist and you say let's pull this stupid thing.” (Participant 2).
Function:
Two key themes were identified with respect to function. First, patients believed that lack of function made the limb useless, even an impediment. One patient (Participant 8) commented that “See it's not so much that I want to amputate, it's just that…Having my leg is worse than amputating it.” The second theme was a desire for improved function. Some participants had seen videos of individuals with amputations being physically active in daily life as well as in sports. They hoped that they too could be active after an amputation. Others simply hoped to improve their walking or to be able to wear regular shoes again. One patient (Participant 3) noted that “I wanted to improve my function. Be able to wear shoes…walk for extended periods of time…”
Participation:
As a result of pain and decreased function, all participants were limited in some aspects of life. Participants gave up hobbies and even employment. This inability to participate deeply impacted their decision. One patient (Participant 7) noted that “I was very active before, I was working six days a week…And then this happened and now I can't do it.” Another patient (Participant 8) noted that “I wanted my life, so I figured that the only way to do it was to go ahead and have it amputated. And like I said, I didn't figure it could be any worse, it would have to be better.” For some participants this decreased involvement in activities led to a sense of isolation. As noted by one patient (Participant 7), “…that's what I really found when I was hurt, that bothered me the most, is staying in the house, looking at four walls all of the time.”
Factors with Minimum or No Influence
Three factors that one might assume to be important actually had little influence on the patients’ decisions: body image, self identity, and the opinions of others.
Body Image:
All participants indicated that the physical appearance of having an amputation did not influence their decision. Participants indicated that the impaired limb did not look natural to begin with, so a prosthesis would not be worse.
Self Identity and Physical Self:
None of the participants expressed that their sense of self or personal identity was linked to having a complete limb. In fact, participants expressed that the involved limb impaired their self identity.
Opinions of Others:
None of the participants indicated that the opinions of family members, friends, peers, or health professionals had a large impact on their decision making. Some participants had the support of family and friends, whereas others expressed determination to proceed regardless of whether or not the family was supportive. As one patient (Participant 3) noted, “My husband said that he didn't agree with my decision and so I just said, ‘This is my decision. Back off. You're not going to be part of this decision.’” Similarly, most participants were not interested in health-care professionals’ opinions about whether they should have an amputation. Many persisted in pursuing amputation despite the fact that their physician had told them that it was not their best option.
Other Factors
Information:
Participants had variable amounts of information about the surgical procedure and living with an amputation. Most participants did not have much information prior to making their decision; however, those who did found it helpful. One patient (Participant 5) noted that “I didn't have any [information]…I didn't consult any papers…” and another patient (Participant 3) commented that “So he was able to visually explain it, gave me the literature to read about the technology at that time. By having that information, I was able to visualize it a lot better.” There was also a difference in the amount of information that participants wanted and sought out prior to deciding. Participants fell into one of two categories. Some did not want any information, whereas others wanted to know about life with an amputation. Those looking for more information found the data helpful in their decision-making process. However, they were not always able to find what they needed. One participant (Participant 5) commented that “It was just like a rotten apple. You don't need to know why, just remove it…before it spoils the other. Even if I were to have tons of information, it doesn't matter. When you want it done, you want it done.” Some participants expressed frustration at not being able to speak with other amputees. They wanted to hear other amputees’ experiences to better understand the ramifications of their decision. One patient (Participant 2) stated that “I tried to talk with other amputees. Mainly about my job. Were there any other truck drivers that were driving? What's my license going to be like?” Most participants did not have much input from health-care professionals prior to making their decision; therefore, they had limited medical information on which to base their decisions. Some tried, unsuccessfully, to initiate conversations with their doctors about amputation. A few participants managed to speak with health-care professionals (for example, a physiatrist specializing in amputee medicine, an orthopaedic surgeon, or a prosthetist). They found that when accurate information was provided from the professional regarding life with an amputation, it was welcome and helpful. One patient (Participant 7) stated that “It was good too, my wife was there…We decided right there and right then that we would, you know, go through with it. She was very good to explain everything…”
Mental State:
The interviews placed minimal emphasis on the participants’ mental state at the time of their decision. However, a few participants commented how their painful, nonfunctioning limb contributed to a depressed mood, which became a factor in their decision-making process. Some of the participants recalled that when they suggested an elective amputation, their mental state was questioned by health professionals. One patient (Participant 8) recalled “…doing all of the head tests with me and the conversation to see if I would break down…to make sure I was mentally aware of what I was doing…” At least one patient (Participant 3) found that the extended period of time between the initial event and the amputation allowed her to come to the decision in a rational and informed way. She did not feel that she was swayed by emotion one way or another and noted that “I had the 20 years of living with the accident before I could make the informed decision.”
The Decision
For most participants, deciding to have an elective amputation was a process that occurred over many years. After considering the factors that they thought to be important, all participants strongly believed that the decision to amputate was a personal one that they made independently. Patients believed that living with the impaired limb was their personal plight. They reported that no one else could truly understand what they were experiencing. While many were interested in getting information about an amputation, participants did not want anyone telling them which decision to make. As one patient (Participant 3) noted, “Somebody shouldn't say to you, ‘Do this.’ I think it has to be your own decision even if it takes you two years to make that decision.”
Preoperative Consultation and Surgery
The participants had varied experiences finding a surgeon to perform the amputation once they had made their decision. Some found their physician to be receptive, whereas others had a frustrating experience and had to speak with multiple surgeons. They expressed great relief when they found a surgeon who was open to their desire to have an amputation. All participants stated that the surgery and rehabilitation were a positive experience. They did not report any surgical complications.
Outcome
It is important to note that the outcomes described are those discussed at the time of the interview. Given that the participants will have ongoing experiences with the amputated limb, their perceptions may evolve.
Two distinct themes related to outcome arose. First, patients satisfied with the outcome of the procedure had results that met or exceeded their expectations. They recognized the limitations associated with having an amputation but were pleased with the outcome nevertheless. Less-satisfied participants had less-realistic expectations about living with an amputation given their particular situations. One participant was disappointed that he was not able to do his job as he used to because it was too slippery for him to walk on ice with a prosthesis. One patient (Participant 8) noted that “I would have to say they [my functional abilities] were better than what I expected. Within a month and a half I was back to a normal life, being able to walk…”
The second theme was a relationship between the level of satisfaction with the amputation and the severity of preoperative pain and impairment. Participants in whom the preoperative pain and decreased function had substantially interfered with their daily activities were happier with the result of the procedure. One patient (Participant 5) stated, “Once it's gone…it's not going to hurt, it's not there anymore. And to me it worked out the way I hoped.”
Phantom pain was experienced by half of the participants. For most, the pain was fairly infrequent and manageable. Following amputation, the majority of participants experienced reduced pain and improved function, which allowed them to participate in more activities. One patient (Participant 4) noted, “And now I walk, I could walk for 6 miles, I could ride a bicycle…”
Five of the six participants were happy with their decision and with the outcome. Some expressed regret that they had not had the amputation earlier. One participant was not happy with the outcome and wished that he had not had surgery. One patient (Participant 3) noted that “I'm satisfied with my decision…it's pretty good in function.” Another patient (Participant 7) stated that “If I would have had to do it all over again, I would have done it a lot earlier…” A third patient (Participant 2) stated that “I would have rather put up with that pain than deal with what I'm dealing with now…I am so glad that I did what I did before the amputation…I lived my life with that pain but I was really active…”
Analyzing the structure and common themes of these narratives provides insight into the personal experiences and key factors that influenced participants’ decisions to undergo an amputation. While the deliberation periods differed in length among the patients, all patients were emphatic that the decision to have an elective amputation was a personal one. The most common personal factors influencing their decision were pain and decreased function. Pain has previously been described as an indication for elective amputation22. Honkamp et al. demonstrated a significant (p < 0.0001) decrease in pain frequency and intensity as well as increased function after amputation for the treatment of intractable foot and ankle pain in a study of eighteen patients with unreconstructable limbs22.
All participants described a change in perspective regarding the impaired limb. Participants transitioned from passively putting up with problems to actively seeking solutions to improve their situation. Typically, this transition occurred over many years, which suggests that individuals must process a lot of information and experiences before making the decision to have an elective amputation. There is rarely a sentinel moment when the decision is made quickly.
Satisfaction with the outcome was related to how closely the results fit with their expectations. This is consistent with previous research regarding patients undergoing spinal decompression surgery, which demonstrated that satisfaction is related to realistic patient expectations23. In the present study, participants who spoke with health-care professionals about life with an amputation and prosthetic devices found the information helpful in both their decision-making process and in setting expectations. Expectations were shaped by the quantity and quality of information received prior to surgery.
Participants had varying desires for seeking out information from physicians. While some patients wanted information, none wanted the opinions of others, including health-care professionals. We speculate that the participants who reported not wanting information from physicians likely did not want opinions. This group may have accepted information provided in an unbiased manner. Regardless of their desire for information, patients benefitted from information, given that satisfaction after surgery was related to realistic patient expectations and realistic expectations were related to being well informed. Patients considering elective amputation should have a consultation with a physiatrist or surgeon specializing in the care of patients with amputations. The health-care professional can provide these patients with information on aspects of living with an amputation, including pain management and function with and without a prosthesis. Furthermore, meeting with an amputee peer may provide a valuable source of information for patients considering amputation. Several participants indicated that this specific form of information would have been beneficial. However, given that each individual amputee has a different experience, the medical professional should assist the patient in considering the information acquired from the peer in the context of the patient's own medical and social situation.
Several factors that the research team anticipated as being influential for participants were not. Body-image issues arising after lower extremity amputation have been related to sex differences24. The data from the present study do not confirm these findings. No issues related to body image, regardless of sex, were found. Given that the present study included only two women, no conclusions can be made regarding the impact of sex with respect to body image. Participants indicated that body image concerns were not deterrents as the impaired limb appeared abnormal. In addition, the participants’ choice to undergo amputation was not deterred by a sense of losing part of their identity with the amputation. This perspective may have facilitated their decision to undergo elective amputation of a limb and may be an indicator of patients who are more receptive to elective amputation.
Participants’ reports that family and friends did not have much influence over their decision were surprising. Literature has suggested that patients’ decision-making regarding total joint replacement surgery is powerfully shaped by peer-based information25. One reason for this difference may be that, as it is a relatively common procedure, patients are likely to know someone who has had a joint replacement. Elective amputation is much rarer, and the patients’ peers are unlikely to have experienced an amputation. If participants had had more contact with amputees, there may have been more influence from these peers.
The present study had some limitations. All participants were from one center. Amputee care is very specialized and usually is centralized in large cities. Although the participants were from urban and rural settings, a multicenter trial would be beneficial to explore the experience of patients in other communities.
Another potential limitation is the small number of participants. It is rare for a patient to have an elective amputation, so the population is limited. Despite a rigorous retrospective chart review, it is possible that some potential participants were missed because of the amount of detail recorded in the charts regarding the circumstances under which the decision to amputate was made. A prospective trial would be a better way to identify potential participants in the future. However, it is notable that despite the small sample size, we achieved theme saturation.
The most important limitation is that this study only explored the decision-making process for patients who chose an elective amputation without a control group. Additional studies involving patients who decided against elective amputation are needed. However, from the timelines of the participants’ narratives, it is apparent that the decision to have an elective amputation can occur years after the initial catalyst. It would be difficult to determine which patients had definitively decided against having an elective amputation to recruit for this type of study. A better choice would be to prospectively study patients with severe lower-limb trauma to learn about the decisions that they make in dealing with functionally impaired lower limbs over time.
In conclusion, the key factors in the decision to undergo an elective amputation are the presence of pain and the desire for improved function. Satisfaction with the outcome after an amputation is linked to patients’ expectations regarding life with an amputation. Realistic expectations are created by having accurate information. Health-care professionals should assist patients facing this decision by providing information regarding life with an amputation and by connecting these patients to other patients who have had previous amputations. It is important that these amputee peers be appropriately matched so that the patient can have realistic expectations.