Interviewing the Amputee-A Step Toward Rehabilitation
Dee Malchow, R.N. *
James Clark, Ph.D. *
Reprinted from Orthopaedic Review, Vol. XIII, No. 11, November, 1984, pp. 47-56.
A wide range of emotional, psychological, and social problems is inherent in the reaction to loss of a limb. Degree of reconciliation to the loss, rapidity of adjustment, and success of rehabilitation vary greatly among individual amputees. Age, emotional nature, level of understanding of the problems faced by amputees, and support received from family or friends are all factors that influence the adjustment process.
A discussion between a health care professional and the amputee, either before or after surgery, can be an important first step in identifying the beliefs and needs of each amputee and can serve as a basis for developing an effective rehabilitation program. Since close to 110,000 lower and upper limb amputations are performed annually in the United States, the need for such individually tailored rehabilitation programs is significant.
A WELL CONDUCTED INTERVIEW
At Harborview Medical Center in Seattle, we have found that a well conducted interview with the amputee can help reduce the information gap that often exists between patient, health practitioners, and support groups. It not only enhances the quality of treatment but also offers the amputee valuable insight and assistance in reestablishing his or her direction in life. The interview focuses on the patient's learning needs regarding amputation; how the patient is adjusting and coping; how well he or she is being supported emotionally, psychologically, and financially by others; and significant problems that may pose roadblocks in the future.
The interview is conducted through the Limb Viability Service, established in 1979 at Harborview because there were no inpatient services in the community specifically oriented to amputees. About 40 amputations are performed each year at Harborview, which is a regional trauma center. Over one-third of these amputations are due to trauma, and the remainder to vascular disease.
A 20 to 30 minute interview before or after surgery follows a variable format that may be adapted to the circumstances of each patient. It is important to keep in mind that this is an initial assessment tool for obtaining specific information. Patient education, extended discussion, and problem solving are not incorporated into this interview but are arranged to take place later. Information obtained in this initial session helps increase decision accuracy throughout treatment and gives members of the team involved in the patient's treatment and rehabilitation an understanding of the patient's needs and goals. The interview also helps health care professionals assess the patient's current level of functioning in reference to available treatment or rehabilitation options, and it can help them pinpoint particular teaching or training methods that can aid the patient's adjustment to the amputation.
The interview format and questions are revised and adapted for any patient, from the teenager to the elderly. Geriatric patients account for approximately 80% of the amputations performed in the United States each year, and 65% to 75% of the new amputees at Harborview are in this patient population. Unfortunately, this age group may have a relatively narrow band of options available with respect to employment opportunities, income adjustments, and personal goals. But regardless of their limitations, geriatric patients do have goals and aspirations that deserve attention. For younger amputees, the interview process can be vital as they face new choices and decisions in reorienting their lives.
OBTAINING PERMISSION AND DEFINING INTERVIEW LIMITS
Asking permission to conduct the interview is most important because it gives the patient some feeling of control over the process. Most patients welcome a chance to talk, but some do not. The health care professional must be sensitive to the issue of invading the patient's sense of privacy as many of the questions relating to personal matters can appear "nosy." Other family members or friends, however, may not be able to serve the important role of an objective listener, and the amputee needs such a listener during the adjustment to a traumatic experience in life.
Prior to the interview itself, the health practitioner and patient discuss how long the interview will last, how the information will be used, and any concerns about confidentiality of responses. As another means of setting limits, the interviewer clarifies his or her intentions with regard to meeting the patient's needs. The patient is made to understand that these needs will be acknowledged during the interview, but that strategies for dealing with them will be worked out later. For trust to develop between patient and interviewer and for maximum results, the patient must be comfortable with the purpose, use, and mechanics of the interview process.
TIME AND PLACE OF INTERVIEW
The specific time and place of the interview are chosen carefully. The hospital is not an ideal setting in terms of privacy, but every effort is made to ensure the patient's privacy and comfort. Choosing a time when the patient is not overly rushed or anxious shows respect for that individual and enhances the accuracy of his or her answers. In most cases, the interview is conducted after the amputation, when the patient has had time to begin the adjustment process. We have found that many patients are not inclined to talk prior to surgery. The exceptions may be limb salvage patients who may already have tried or considered other treatment options, or patients with vascular disease who have faced the possibility of amputation for some time.
INTERVIEW FORMAT
Questions are of three types: open-ended questions, which give the patient maximum freedom to respond; range-of-response questions, which allow patients the freedom to express both positive and negative aspects of a particular issue; and limited-response questions, which may elicit a simple yes/no answer.
We find it helpful to write down the patient's responses during the interview. These notes are included in the patient's records and may be given to the patient as a reminder of the important issues to be considered in the coming months. Allowing the patient to review his or her responses also ensures that the information recorded is accurate and helps to establish and maintain a high level of trust.
Perhaps the most important aspect of the interview technique is the recognition that there is no one right time or right place during the course of treatment for asking questions. Each stage of adjustment carries its own specific concerns and anxieties, be it before surgery, after surgery, or during rehabilitation. It may be appropriate to repeat some questions at various times during the treatment process.
CONTENT OF INTERVIEW
Four general categories encompass questions that represent the most common concerns and needs amputees face: learning needs, support systems, coping, and level of function. The following sections include questions that might be asked in assessing the patient's needs in these four areas. A range of patient responses and their probable meanings are also given. Responses listed are actual replies given by various patients interviewed with this format at Harborview Medical Center.
Learning Needs
Most new amputees have very little knowledge about limb surgery and how it will affect their lives. Providing information is a key to minimizing patient anxiety, enlisting cooperation in treatment, and expediting the adjustment process. The interviewer plays an important role in determining the patient's need for information about amputation outcomes and can also alert physicians, nurses, and others on the health care team to the level and extent of this need. Information exchanges come through discussion between the patient and health professionals, through pamphlets or written information, and through the patient's contact with other amputees, arranged by the health team. The patient's responses to the questions regarding learning needs (Table 1 ) also begin to clarify the options available to him or her at the onset of treatment and throughout rehabilitation.
Support Systems
The questions presented in Table 2 help assess the support systems available to the individual and identify areas of strength and weakness. An experience as intense and as far-reaching as an amputation requires maximum use of support systems, especially if the rehabilitation process will be lengthy. We have found that individuals with close family ties, strong spiritual beliefs, and caring friends seem to handle this loss better than those without such supports. These individuals are able to share the psychological and physiological load with others. Conversely, amputees who are "loners" seem to have a harder time during rehabilitation. Intense emotion, antisocial behavior, and a general inability to "get on with life" seem to plague those who do not seek or cannot accept support from others.
This phase of interviewing focuses on the future and encourages the patient to examine ways of resuming his or her life. Usually, much of the anxiety and worry eases following surgery because the patient has experienced a sense of finality with respect to the treatment decision. It is important for both the health professional and the patient to be aware of the existence and value of support systems. In clarifying questions about existing support and in focusing on additional support possibilities, we find it helpful to give the patient a "laundry list" of options to consider such as spiritual beliefs, meditation, hobbies, or other activities that offer some relief or distraction from concern about the amputation. The health team can then encourage the patient to seek and retain additional support, and the patient can build upon strengths and compensate for weaknesses.
Emotional Reactions/Coping
In reporting their observations on the grief process, several authorities have equated the loss of a limb with the loss of a loved one. Certain universal reactions to amputation can be expected, although individuals vary in how they experience grieving. The six typical stages of the grief process are denial; bargaining; anger; grief, sadness, and depression; adjustment and adaptation; and acceptance.
During the first stage, the new amputee obviously cannot deny the physical loss but may deny that this loss will alter his or her life in any significant way. In the second stage, the patient may bargain with anyone whom he or she perceives to have some control over his or her physical well-being, e.g., God, the physician, or the health care team. A plea from a young athlete might be: "Call in all the experts and have them fix my leg so that I can run again. Don't worry about money. I'll pay any amount you want."
During the third stage, anger may be directed toward almost anyone or anything, e.g., the individual(s) who caused the accident (in the case of a trauma victim), the patient him- or herself for being physically careless, or the physician who was not able to save the limb. Once the reality of the loss and its implications have been absorbed, depression sets in, and the patient may experience intense emotions, loss of appetite, and sleep disruption. At the end of this stage, the patient also feels anxiety about the short-term and long-term impact of the amputation on daily life. In the fifth stage, the patient begins to adapt to the physical loss and starts to make adjustments in daily activities. Finally, the patient begins to accept the amputation and may no longer perceive it as a tragic occurrence.
In interviewing the patient, it can be difficult to determine what stage of the grief process he or she is experiencing. Some individuals fluctuate. They experience the earlier stages of grieving for a while, start to adjust, and then revert to the earlier stages. Appropriate questioning helps assess the patient's progress in handling the loss.
The first question in Table 3 is directed at the grief process, and the other questions examine how well the patient is coping with emotional difficulties. We have found that encouraging patients to express their feelings helps them to relieve anxiety and emotion and allows them to see more clearly various approaches to their situation. The health professional can also use this information to direct patients toward the type of support they need.
The final questions in Table 3 deal with a highly personal area, body image, for example, how amputees visualize themselves and how they believe others see them. Body image involves self-esteem, sexuality, and many fragile emotional concerns. The health professional may feel reluctant to ask these questions for fear of invading the individual's privacy. However, body image, and especially sexuality, are such important topics that they ought to be approached. We introduce these topics and then let the patient decide whether to continue discussing.
During this phase of the interview, it is not unusual for a patient to express a range of emotions from weeping to withdrawal. Even though some of the major treatment decisions have been made, many smaller but emotionally charged decisions remain, and the patient may need permission to cry out for help. Here, the interviewer assists the patient in discovering what resources may be available for finding answers to his or her questions. Since interviewing often triggers information seeking, the interviewer does everything possible to make sure patients have immediate access to resources, especially those who are immobilized or isolated. A telephone, for example, can be a valuable information seeking tool.
Level of Function
The questions in Table 4 are directed at vocational and recreational activities. Here, the interviewer helps the patient focus on areas of life over which he or she may or may not have control, and helps to identify areas in which the patient is experiencing excess demand. If, for example, a patient is overly burdened about the cost of not working for a time, or about the psychological adjustment to a loss of "sex appeal," the interviewer helps him or her focus on understanding how these concerns are posing undue demands. The interviewer's role is that of a supportive coach, letting the patient express concerns but asking questions in such a way that the amputee can consider a range of options. Range-of-re-sponse questions are extremely useful here because they encourage the patients to explore a variety of ideas and consider different courses.
The rehabilitation phase can be both exciting and frustrating. Excitement occurs when the amputee realizes that the so-called handicap or disability may not be nearly as restrictive or significant as originally thought. Frustration can occur through the loss that accompanies amputation, and also because range of activity or endurance does change, even if in minor ways. An exchange of questions and answers on level of function helps to build a sense of realism about the best options for the future.
During the interview, the patient may ask the health practitioner: "What do you think I should do?" Patients often seek answers for their personal concerns from health professionals. While it is tempting to engage in problem solving with the patient, it may be more helpful for the patient simply to record information rather than to exchange it. Problem solving during this initial interview is undesirable because it tends to foster dependency rather than support, and it can be very time consuming. It also causes the interview to be focused on one aspect of treatment rather than on a broader range of concerns. At Harborview, the interviewer makes plans with the patient to return for another discussion or has the appropriate health care worker contact him or her regarding the expressed problems and concerns.
The interviewer needs to resist the temptation to be highly positive or optimistic without also acknowledging the patient's realistic anxiety. A "low-key" approach reassures the patient that the interviewer is merely obtaining information and is not trying to alter the patient's feelings.
We have found that the interview questions elicit widely varied responses according to the unique situation of each individual. For example, older people often convey a concern for independent function and self-care, while the young athlete is typically concerned with returning to sports and recreation. The tough, ultra-masculine man may be unwilling or unable to share any strong emotion other than anger, while someone experiencing the full impact of his or her loss may be unable to answer questions because of intense emotions. Occasionally, an individual has a full understanding of what lies ahead because of a close association with an amputee in the past. More commonly, however, the patient is ignorant about amputation and how an altered body will affect his or her future.
THREE EXAMPLES
Three examples follow that illustrate how the interview format has been used during the past three years at Harborview to generate information to meet patient needs.
Example 1
One middle-aged man indicated uncertainty about his insurance coverage for a prosthesis. Investigation by the Limb Viability Services Coordinator revealed that even though he had been forced to retire early because of his condition, the policy still covered his medical expenses fully, including the cost of the artificial limb.
Example 2
An elderly lady expressed dramatic relief during the interview when she learned that the phantom limb sensation was normal. She was afraid to share the experience until she was told how common it was. "I knew I had lost my leg, but I was afraid I was beginning to lose my mind," she said.
Example 3
In commenting on the value of the Limb Viability Service, one patient observed: "I never realized how lucky I was to have been treated here until I talked with other amputees who had no specific support at other hospitals. They have very little idea of what's happening or what's coming. Things went so much more smoothly for me."
CONCLUSION
We have found the interview technique outlined in this paper to be extremely useful in enhancing the care and rehabilitation of our amputee patients, and we recommend its use in all centers handling this patient population. This interview technique need not be confined to major trauma centers with specific amputee rehabilitation programs; it can easily be adopted by smaller hospitals as well. In this case the interview could be conducted by a physician, nurse, social worker, physical therapist, or other health care professional. All that is required is sensitivity to patient needs and the willingness to invest some time in providing information and support to the new amputee.
References:
- Alpert, S.H., "The Psychological Aspects of Amputation Surgery," Orthotics and Prosthetics, 36, 1982-1983, pp. 50-56.
- Division of Health Care Statistics, National Center for Health Statistics, Hyattsville, MD. Unpublished data from the 1981 National Hospital Discharge Survey.
- Fishman, S., "Amputation," Psychological Practices with the Physically Disabled. Garret, J.F., Levine, E.S. (eds). New York, Columbia University Press, 1961.
- Hoover, R.M., "Problems and Complications of Amputees, Clin. Orthop., 37, 1964, pp. 47-52.
- Pedersen, H.E., "The Problem of the Geriatric Amputee," Artificial Limb, 12, 1968, pp. i-iii.
- Vitali, M. and E.E. Harris, "Prosthetic Management of the Elderly Lower Limb Amputee," Clin. Orthop., 37, 1964, pp. 61-68.
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