Emotional and psychological reactions to amputation

Original Editor - Mariam Hashem

Top Contributors - Mariam Hashem, Uchechukwu Chukwuemeka, Claire Knott and Amanda Ager


Introduction

Amputation presents multi-directional challenges. It affects function, sensation and body image. The psychological reactions vary greatly and depend on many factors and variable. In most cases, the predominant experience of the amputee is one of loss: not only the obvious loss of the limb, but also resulting losses in function, self-image, career and relationships[1].

Many of the psychological reactions may be transient, some are helpful and constructive, others less so, and a few may require further action (e.g. psychiatric assessment in the case of psychosis)[1].

About ≥30% of amputees are troubled by depression[1][2]. Psychological morbidity, decreased self esteem, distorted body image, increased dependency and significant levels of social isolation are also observed in short and long-term follow up after amputation[3][4].

Psychological Reactions to Amputation

Immediate reaction to the news of amputation depends on whether the amputation was planned, occurred within the context of chronic medical illness or necessitated by a sudden onset of infection or trauma[5].

After learning that amputation may be required, anxiety often alternates with depression. Anxiety may be the fate of the limb that will be removed, as well as about the prospect of phantom limb pain, which many patients (who know of other amputees) may be familiar with[5].

Post traumatic stress disorder (PTSD) appears to be more common in amputees following combat, accidental injury, burn and suicidal attempts[6].In contrast, PTSD is relatively rare (< 5%) among amputees whose surgery follows a chronic illness[7].

Cosmetic appearance appears to play a great role in psychological sequelae of amputation.Body image, defined as ‘the individual’s psychological picture of himself’[8][9] is disrupted when a limb is amputated[1][10]. A number of of body image-related problems may be frequently experienced following amputation such as anxiety and sexual impairment and/or dysfunction.[11][12] Mutilation anxiety may also affect the sexual function of a patient[13]. Men have reported feeling castrated by amputation, while women are more likely to report feeling sexual guilt and “punished” for some real or imagined transgression by amputation[14][15].

Life goes on.jpg

The reaction to amputation may not always be negative. When amputations occur after a long period of illness and loss of function, the patient may already has gone through a period of grieving and has no need to grieve again for the amputation[1].

A study[16] that investigated positive thoughts in amputation showed that 56% of people thought about their amputated limb. Participants stated many reasons as good things that happened following amputation such as: the Independence given to them by the amputation and the prosthesis, subsequent change in their attitude of life, improved coping abilities, financial benefits, elimination of pain and that amputation was a character building for some of them. Furthermore, finding positive meaning was significantly associated with more favorable physical capabilities and health ratings, lower levels of Athletic Activity Restriction and higher levels of Adjustment to Limitation[16]

Coping Styles

Five stages of grief.jpeg

When there is time to think about impending loss, classic stages of grief may be experienced[5][17]:

  • Denial: often manifest as refusal to engage in discussion or to ask basic questions about the planned procedure. A minority of amputees experience denial in relation to accepting their impairment (i.e. the reality that their limb is missing). However, phantom sensation may play a role in reinforcing the denial. This degree of denial may lead to serious problems. Such a disconnection with reality may indicate some underlying psychosis [1] This stage is less pronounced if amputations occur after a long period of illness and loss of function,
  • Anger: which may be directed towards the medical team, with expressions of being cheated or tricked into agreeing to an amputation
  • Bargaining:Feeling of guilt and second guessing on things past or what that should have being done differently. Attempts by the use of excuses to forestall the surgery or to delay it indefinitely for a myriad of reasons such as ‘’I’m too tired I don’t want to go through any major surgery’’ are also seen.
  • Depression: taking the form of learned helplessness’’ feeling of passivity, and being overwhelmed.
  • Acceptance: which may not be reached until the patient is into the rehabilitation process.

Maladaptive coping styles can be classified as overcompensation, surrender, or avoidance. Overcompensation can take the form of hostility, excessive self-assertion (e.g., by refusing help that is needed), recognition seeking, manipulation, or obsessiveness (e.g., by becoming preoccupied with smaller details of care at the expense of regaining whatever enjoyment of life is still possible). Surrender may take the form of clinging to the sick role and continuing to demand a high level of nursing care, while refusing to undergo rehabilitation. Avoidance may result in psychological withdrawal, addictive self-soothing, or social withdrawal[5].

In contrast, some amputees adapt effective coping styles that result from self-efficacy, using humor, making plans and visualizing the future, and actively seeking help to solve problems. The Way of Coping Check-List can be used to screen for patients at high risk for adjusting poorly to amputation and for having further negative sequelae.

STAGES OF ADAPTATION[18]

It is useful to think of the process of adaptation as occurring in four stages[19]

Preoperative Stage

Among amputees for whom there is ample opportunity to be prepared for surgery, approximately a third to a half welcome the amputation as a signal that suffering will be relieved and a new phase of adjustment can begin. Along with this acceptance, there may be varying degrees of anxiety and concern. Such concerns fall into two large groups:

Practical issues as the loss of function, loss of income, pain, difficulty in adapting to a prosthesis, and cost of ongoing treatment.

Symbolic concerns such as changes in appearance, losses in sexual intimacy, perception by others, and disposal of the limb.

Most individuals informed of the need for amputation go through the early stages of a grief reaction, which may not be completed until well after their discharge from the hospital. The presentation of the surgery by the surgeon to the persons who will undergo amputation also factor in the the coping of the patient after amputation.

Immediate Postoperative Stage

This period may lasts from hours to days, depending on the reason for the amputation and the condition of the residual limb.

Psychological reactions noted in this phase are concerns about safety, fear of complications and pain, and in some instances, loss of alertness and orientation. In general, those who sustain the amputation after a period of preparation react more positively than do those who sustain it after trauma or accident. Most individuals are, to a certain degree, "numb," partly as a result of the anesthesia and partly as a way of handling the trauma of loss. For those who have suffered considerable pain before the surgery, the amputation may bring much-needed relief.

In-Hospital Rehabilitation

The most critical phase and presents the greatest challenges to the patient, the family, and the amputation team. Initially, the patient is concerned about safety, pain, and disfigurement. Later on, the emphasis shifts to social reintegration and vocational adjustment. Some individuals in this phase experience and express various kinds of denial shown through bravado and competitiveness. A few resort to humor and minimization. Mild euphoric states may be reflected in increased motor activity, racing through the corridors in wheelchairs, and over talkativeness.Eventually sadness sets in.

At-Home Rehabilitation

It is during this phase that the full impact of the loss becomes evident. A number of individuals experience a "second realization," with attendant sadness and grief.Varying degrees of regressive behavior may be evident, such as a reluctance to give up the sick role, a tendency to lean on others beyond what is justified by the disability, and a retreat to "baby talk." Some resent any pressure put upon them to resume normal functioning. Others may go to the other extreme and vehemently reject any suggestion that they might be disabled or require help in any way. An excessive show of sympathy generally fosters the notion that one is to be pitied. In this phase, three areas of concern come to the fore: return to gainful employment, social acceptance, and sexual adjustment. Of immense value in all of these matters is the availability of a relative or a significant other who can provide support without damaging self esteem.

Factors/variables affecting psychological reactions[18]

Age

Infants born with a congenially missing limb adapt adequately as they learn to make compensatory use of their remaining faculties. Children adapt well to the loss of function and manipulate prostheses and other limbs with great agility. They are particularly sensitive to peer acceptance and rejection[20]. Amputation in the preadolescence or adolescent age group is a great threat to emerging sexual identity[21].

Younger trauma patients are most likely to be affected by the multiple losses of amputation, for whom amputation is often the result of a sudden unforeseen event, and whose level of function following amputation normally compares unfavorably with their pre-amputation abilities.Several early studies suggested that elderly amputees were at greater risk for psychiatric disturbances such as depression. More recent studies find just the opposite[22]. In either case, the greatest challenges for the young amputee are in terms of identity, sexuality, and social acceptance, and for the elderly, in terms of livelihood, functional capacity, and interpersonal dealings[1].

Personality Style

Individuals who are narcissistically invested in their physical appearance and power tend to react negatively to the loss of the limb. They see it as a major assault upon their dignity and self-worth. Conversely, dependent individuals may cherish the sick role and find in it welcome relief from pressure and responsibility[19].

Those with a premorbid history of depression are more susceptible to dysphoria following amputation[23] The loss serves to crystallize notions of a basic defect, sometimes expressed in self-punishing behaviors[24].

Timid and self-conscious individuals who are excessively concerned about their social standing are more likely to suffer psychologically from limb loss than are self-assured individuals[25].

Unexpected reactions may arise from secondary gain. If disability results in improved financial or social status, psychological adjustment may be made easier, especially if those gains are not directly challenged[19].

Economic and Vocational Variables

It stands to reason that individuals who earn their living from motor skills that are lost with the amputation are especially vulnerable to adverse reactions. Others who have a wide range of skills or whose main line of work is not particularly dependent on the function of the lost limb may experience less emotional difficulty.

Unemployment is associated with a greater degree of psychological stress and may be a predictor of phantom pain[26].

Psycho-social Support

Single and widowed individuals suffer more psychological distress and difficulty in adapting to amputation than do those who are married and have a family. Particularly helpful in the adjustment of the adult amputee is the presence of a supportive partner who assumes a flexible approach, takes over functions when needed, cuts back when the amputee is able to manage, but at all times maintains the amputee's self-esteem[27].

Peer acceptance beyond the family is critical in the successful adaptation of all amputees and, especially, children and adolescents.

Medical Factors:

Health

Healthy, young individuals who lose a limb traumatically have many advantages over older, frail individuals.

Mental health problems can easily enter into the picture through a complicated series of psychosomatic and somatopsychic responses to the loss[19].

Reason for the Amputation

Adults suffering a traumatic or accidental limb loss tend to react with varying forms of denial and bravado. Those who undergo an elective amputation for the cure of a malignancy benefit from the availability of time for preparation and exploration of alternatives. The reaction is usually one of realistic acceptance and cooperation with the treatment team. Such individuals seem to make an excellent adjustment, assuming of course that the malignancy has been cured[19].

Preparation for the Amputation

There is little doubt that those individuals who have had adequate warning and preparation far better in the immediate postsurgical period, whereas those who do not receive such preparation tend to react negatively or with massive denial.

In general, the greater the loss, the greater the difficulty in adjustment. There are, however, instances of massive psychological reaction to small physical losses- for example, the loss of a toe or a thumb-and of minimal reaction to severe loss of several limbs. Above-elbow (transhumeral) amputation brings with it great anxiety and frustration, and bilateral transhumeral amputation is perhaps the most difficult situation of all. Contrarily, amputation of one leg below the knee allows relatively good adjustment, with restoration of both function and body image[19].

Surgical Complications

Those individuals who suffer pain, infection, and residual-limb revision tend to develop greater degrees of despair and withdrawal than those who do not.  A poorly performed amputation almost guarantees poor rehabilitation. While a well-performed amputation does not guarantee a successful rehabilitation outcome, it certainly makes successful rehabilitation more possible[28].

Prosthetic Rehabilitation

The use of well-fitting prosthetic reduces pain and  post-amputation depression[5]. Conversely, if the prosthetic application is absent or delayed, greater degrees of anxiety, sadness, and self-consciousness are noted. The crucial elements appear to be the integration of the prosthesis into the body image and the concentration of attention on future function rather than on past loss[19].

The Team Approach

Because adaptation to amputation is so multifaceted and because it is an evolving process requiring different kinds of attention at each stage, the team approach has emerged as the standard approach to rehabilitation.

The range of skills and points of view represented in a team increases the probability that all aspects of rehabilitation will be addressed and none overlooked. The team may include members of the family and successfully treated amputees. Amputee self-help groups are further extensions of this approach[19].

Vocational Rehabilitation

Restoration of the capability for gainful employment is an integral part of the patient's recovery. Kohl[29] notes that amputees may regard unemployment as a "denial of their 'right' to participate in the family's decision making processes." It is her view that "the success of rehabilitation efforts should not only be measured by return to income-producing work, but rather the return to the person of his decision-making abilities to choose the lifestyle that would be most fulfilling to him''[19]

Management/considerations[18]

Preparation

preparation must include a clear explanation of the reasons for the amputation; the viable alternatives, if any; the exact surgical procedure; and the rehabilitative process following it. Anticipating and dealing with the various issues that patients will face, even if these are not raised by the patients themselves, is of great help. Such issues include disposal of the limb, relationship with friends and family, degree of functional loss and return, work capability, costs of surgery and rehabilitation, sexual adjustment, and social impact[19].

At this stage it is recommend that the surgeon paint a realistic picture of the immediate and long-term goals for the patient and his family. Labeling the amputation as a reconstructive prelude to an improved life is a much different matter from implying that it is a mutilation and a failure. Furthermore, a hopeful attitude, detailed explanation of all aspects of the surgery and the rehabilitative process, and full response to all questions (especially those that seem trivial) appear to diminish anxiety, anger, and despair[19].

Early Prosthetic Fitting and Mobilization

The psychotherapy helps in accepting the body image thereby reducing the distress. This reinforces the need for psychological assessment and intervention after the amputation to prevent psychological abnormalities[19].

The Interdisciplinary team approach

Team management reduces hospital stays significantly and increases the long-term effectiveness of rehabilitation. The amputee rehabilitation team should include the surgeon, surgical nurses, prosthetist, physical therapist, occupational therapist, social worker, vocational counselor, and if indicated, a psychiatrist or psychologist. Each member of the team is in a position to address one aspect or another of the patients needs[19].

The involvement of members of the family at all of these stages can be of tremendous help. Perhaps the most valuable contribution of the team approach is the facilitation of a more rapid return to familiar surroundings and to independence[19].

Treatment of psychiatric illness that precedes amputation can carry benefits for the rehabilitation process. Failed suicide attempts with resultant amputation may present particular challenges for successful rehabilitation, and psychiatric hospitalization as well as intensive outpatient treatment may be indicated[19].

Physiotherapists should consider referring to a psychologist if one of the following symptoms/reactions presents[1]:

  • Expression of a need to talk
  • Depressive symptoms, e.g. insomnia, loss of appetite, hopelessness
  • Withdrawal
  • Irritability
  • Anger
  • Unrealistic expectations
  • Denial
  • Suspected residual limb abuse.
  • Self-neglect (personal hygiene, diabetic management, etc.)
  • Risk taking (e.g. trying to do too much too quickly)
  • Anxiety limiting progress in rehabilitation (e.g. can’t or won’t move)
  • Regression or excessive dependence
  • Sabotaging rehabilitation program or discharge plans

Vocational Rehabilitation

No approach to amputation can be considered successful without some resolution of the issue presented by the loss of skill, job, and livelihood. Even in the absence of pressing financial need, the loss of earning capacity may entail a profound loss of self-esteem, which brings with it a variety of adverse psychological phenomena[19].

It is not essential that the person resume work, but it is essential that the person accept whatever new role and capacity that can now be enjoyed[19].

The Barthel index of activities of daily living reflects the general condition of the amputee and the fitness of his prosthesis and suggests its prognostic value for rehabilitation outcome[30]

CBT tenets.jpg

Cognitive-behavioral therapy (CBT) is often used in the psychological management of pain. It utilizes many approaches such as goal setting and problem solving techniques which help amputees cope with their condition.

It is essential that goals are realistic, attainable and provide an opportunity to succeed. Goals may be whole tasks or smaller components of a single activity, broken down into smaller steps. They may be organized into a ‘graded hierarchy’ in which a series of tasks or steps are arranged in order of difficulty, so that the client can work up the hierarchy, building on the progress they have already made to face increasing levels of challenge.

Anxiety management strategies can be taught (such as relaxation,breathing, distraction and cognitive techniques to facilitate this process of gradual exposure to the feared situation.

Helping clients to challenge their negative thinking can also be an important part of psychological therapy. The client should be encouraged to look at the effect the belief has on their mood and behavior and consider alternative ways of thinking.

Problem-solving techniques can often be helpful in assisting the amputee to make the many decisions that may face them following an amputation in a more structured and clear way. This approach takes the client through a series of stages, starting with problem definition and option generation, and moving on to weighing up the pros and cons of the various possibilities, enabling an option to be selected, and action planned, carried out and reviewed.

By the end of psychological therapy, the client should feel equipped with coping strategies that they can apply to a range of situations that may help them to prevent problems developing in the future[19].

Working with family and friends

Friends and family may go through many of the same feelings that the amputee experiences, and when communication is clear and open between the amputee and their social support networks, there may be no need for the psychological therapist to become involved. However, it is very common, particularly in trauma cases, for concern about the amputee’s well-being to lead to family and friends becoming highly protective and trying to bottle up their concerns or distress. This desire to protect is similar to amputees’ own protectiveness, and may lead to conversations that determinedly focus on the bright side. Significant others may therefore benefit from a confidential place in which to share their concerns. Confidentiality becomes critical when working with an amputee and their friend/ relative, and information should not be shared without consent[19].

There are occasions when the psychologist/counselor may see the relative on their own or when their intervention may be entirely on a couple or family basis[1].

Group interventions for amputees

Group discussion programs facilitate adjustment and cover a diverse range of topics such as fears of falling and failing, and changes in body weight and health issues. More recently, Delehanty and Trachsel[31] found that a preventive psycho-educational series of 2–3 groups aiming to provide information, anticipate and normalize future stress and build coping strategies, resulted in significantly lower levels of distress at 8 months following discharge.

In addition to utilizing cultural resilience (involving the patient's ethnic and religious community), social support may come from national organizations (such as ParaOlympics and the Amputee Coalition, each of which has support groups for patients and resources for care-givers to prevent feeling overwhelmed)[1].

References

References will automatically be added here, see adding references tutorial.

  1. 1.0 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 1.9 Engstrom B, Van de Ven, C.Therapy for Amputees. 3rd Ed. Churchill Livingstone. 1999
  2. Ghous M. Depression:prevalence among Amputees. Professional Medical Journal, 2015; 22(2): 263-266
  3. Srivastava K, Saldanha D, Chaudhury S, Ryali V, Goyal S, Bhattacharyya D, Basannar D. A Study of Psychological Correlates after Amputation. Medical Journal Armed Forces India 2010; 66(4):367-373.
  4. Sahu A,  Sagar R, Sarkar S, Sagar S. Psychological effects of amputation: A review of studies from India. Industrial Psychiatry Journal 2016; 25(1):4–10. doi:  10.4103/0972-6748.196041
  5. 5.0 5.1 5.2 5.3 5.4 Bhuvaneswar CG, Epstein LA, Stern TA. Reactions to Amputation: Recognition and Treatment. Prim Care Companion J Clin Psychiatry 2007; 9(4): 303–308.
  6. Fukunishi I, Sasaki K, Chishima Y, Anze M, Saijo M. motional disturbance in trauma patients during the rehabilitation phase. General hospital psychiatry 1996; 18(2):121-7
  7. Cavanagh S, Shin L, Karamouz N, Rauch S. Psychiatric and Emotional Sequelae of Surgical Amputation. Psychosomatics 2006; 47(6):459-464.
  8. Thompson JK, Heinberg LJ, Altabe M, Tantleff-Dunn S. Exacting beauty: theory, assessment and treatment of body image disturbance. Washington: American Psychological Association.1999
  9. https://www.nedc.com.au/eating-disorders/eating-disorders-explained/body-image/
  10. Holzer LA, Sevelda F,  Fraberger G,   Bluder O,   Kickinger W,  Holzer G. Body Image and Self-Esteem in Lower-Limb Amputees. PLoS One. 2014; 9(3): e92943. doi:  10.1371/journal.pone.0092943.
  11. Verschuren JE, Geertzen JH, Enzlin P, Dijkstra PU, Dekker R.  Sexual functioning and sexual well-being in people with limb amputation: a cross-sectional study in the Netherlands. Disabil Rehabil, 2015; 37(3): 187-93. doi: 10.3109/09638288.2014.913704.. 
  12. Woods L, Hevey D, Ryall N, O'Keeffe F. Sex after amputation: the relationships between sexual functioning, body image, mood and anxiety in persons with a lower limb amputation. Disabil Rehabil. 2018;40(14):1663-1670. doi: 10.1080/09638288.
  13. Shell J, Miller M. The Cancer Amputee and Sexuality. Orthopaedic Nursing. 1999;18(5), pp.53-64.
  14. Hogan R. Human sexuality. Norwalk, Conn: Appleton-Century-Crofts.1985
  15. Verschuren JEA. Sexuality and limb amputation: Perspectives of patients, partners and professionals Groningen: Drukkerij Leen NV, Hasselt. 2013
  16. 16.0 16.1 Gallagher P, Maclachlan M. Positive meaning in amputation and thoughts about the amputated limb. Prosthetics and Orthotics International2000; https://doi.org/10.1080/03093640008726548
  17. Axelrod J. The 5 Stages of Grief & Loss.https://psychcentral.com/lib/the-5-stages-of-loss-and-grief/[ Accessed 26th September 2018]
  18. 18.0 18.1 18.2 John C, Racy MD. Psychological Adaptation to Amputation. Atlas of Limb Prosthetics: Surgical, Prosthetic, and Rehabilitation Principles.www.oandplibrary.org/alp/chap28-01.asp [Accessed 19th November 2018]
  19. 19.00 19.01 19.02 19.03 19.04 19.05 19.06 19.07 19.08 19.09 19.10 19.11 19.12 19.13 19.14 19.15 19.16 19.17 19.18 Moore WS, Malone SJ. editors. Lower Extremity Amputation.Philadelphia: WB Saunders, 1989. chap 26.
  20. Boyle M, Tebbi CK, Mindell ER, et al: Adolescent adjustment to amputation. Med PediatrOncol 1982; 10:301-312.
  21. Tebbi CK, Mallon JC: Long-term psychosocial outcome among cancer amputees inadolescence and early adulthood. J Psychosoc Oncol 1987; 5:69-82.
  22. Frank RG, Kashani JH, Kaslani SR, et al: Psychological response to amputation as a function of age and time since amputation. Br J Psychiatry 1984; 144:493-497.
  23. Freierson RL, Lippmann SB: Psychiatric consultation for acute amputees. Psychosomatics 1987; 28:183-189.
  24. Dise-Lewis JE. Psychological adaptation to limb loss. In: Atkins, DJ., Meier, RH editors. Comprehensive Management of the Upper Limb Amputee. New York: Springer-Verlag NY Inc, 1989. pp 165-172.
  25. Parkes CM. Determinants of disablement after loss of a limb, in Krueger, DW editor. Emotional Rehabilitation of Physical Trauma and Disability. New York: SP Medical & Scientific Books, 1984. pp 105-111.
  26. Parkes CM. Factors determining the persistence of phantom pain in the amputee. J Psychosom Res 1973; 17:97.
  27. Parkes CM. The psychological reactions to loss of a limb: The first year after amputation. In: Howells JG editor. Modern Perspectives in the Psychiatric Aspects of Surgery. New York: Brunner-Mazel, 1976. pp 515-532.
  28. Bradway JK, Malone JM, Racy J, et al. Psychological adaptation to amputation: An overview. Orthot Prosthet 1984; 38:46
  29. Kohl S. The process of psychological adaptation to traumatic limb loss, In: Krueger, DW editor.  New York: SP Medical & Scientific Books, 1984. pp 113-148.
  30. Kullman L. Evaluation of disability and of results of rehabilitation with use of the Barthel index and Russek's classification. Int Disabil Stud 1987; 9:68-70.
  31. Delehanty RD, Trachsel L. Effects of short-term group treatment on rehabilitation of adults with amputations. International Journal of Rehabilitation and Health. 1995; 1(2):61–73