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JOURNAL OF VASCULAR NURSING www.jvascnurs.net
DECEMBER 2016
Limb loss: The unspoken psychological aspect Jasmiry Bennett, MS, RN, APRN, ACNP-BC
In the United States, health care providers have diagnosed 29.1 million people with diabetes. Uncontrolled diabetes is the main reason for limb loss. This review addresses the lack of psychological support after limb loss. Few scholarly sources analyze the psychological aspects of limb loss before and after amputation. These sources report that patients do not have a clear understanding of their disease process and that patients often report a lack of empathy and communication from health care providers. There is no standardization of postoperative care instructions causing great confusion and increasing anxiety for both the patient and the caregivers. Individuals with limb amputation express increased depression and body image disturbance along with social embarrassment after amputation. Postoperatively, patients report a decrease in resources once discharged home. Some studies suggest psychiatric consultation preamputation and postamputation. The literature also suggests increased communication between the patient undergoing amputation and their health care provider preoperatively and postoperatively. (J Vasc Nurs 2016;34:128-130)
The diagnosis of diabetes is detrimental and can lead to multifaceted health problems. According to the American Diabetes Association,1 in 2012, the population in the United States diagnosed with diabetes is 29.1 million with 8.1 million that remain undiagnosed. Diabetes is one of the main causes of lower extremity amputation. Accounting for an estimated 54% of the amputation, Advanced Amputee Solution2 states that the percentage increased by 24% over the past several years. Uncontrolled diabetes leads to poor circulation and nonhealing wounds. If diabetes is not addressed, then patients may experience limb loss. The psychological component of amputation from diabetes is not very well studied. There is a need for increased awareness from the health care provider to account for the psychological component of limb loss. The increased rate of amputation due to diabetic complications is on a steady incline. As a nurse practitioner in vascular surgery for 10 years, I have noted that when a patient undergoes amputation, surgeons and hospital employees do not have a standard protocol for treatment. In addition, retention of information is limited, whereas the patient goes through emotional changes so rapidly. Short hospitalization does not allow for the adjustment of a loss of limb. Pastoral care along with psychiatric evaluation is not considered when a decision for amputation is made. This manuscript will focus on the gaps addressing the psychological aspect of the individual with diabetes after limb loss.
From the Texas Christian University, Dallas, Texas. Corresponding author: Jasmiry Bennett, MS, RN, APRN, ACNP-BC, Texas Christian University, 2800 S., University Drive, Fort Worth, TX 76129 (E-mail:
[email protected]). 1062-0303/$36.00 Copyright Ó 2016 by the Society for Vascular Nursing, Inc. http://dx.doi.org/10.1016/j.jvn.2016.06.001
BACKGROUND Amputees report a lack of preparedness when the plan of amputation was discussed with their health care provider.3 Emotional and spiritual components associated with limb loss should be considered; however, they are not.4 Bateup discovers there is no specific information given to the patient on grief and loss after limb amputation. People with diabetes lack psychological support and are at higher risk for psychological distress.5 Nicolucci et al6 affirm the lack of interdisciplinary coordination for this population. The researchers state that psychiatry should be involved in treatment programs for every loss of limb patients. The loss of a limb is comparable with the loss of a loved one. In this situation, the patient undergoes the stages of grief. Spiess et al7 state the amputee undergoes denial, anger, bargaining, depression, and acceptance. Most amputees linger in the depression stage. The addition of a psychiatrist to the interdisciplinary team is speculated to prepare and assist the patient through the grieving process.7 According to Delea et al,8 patients report that psychological support in conjunction with medical management allows a smooth transition through the amputation process. Limited sources discuss the psychological effects of limb loss; those sources that do report similar findings. The literature also reports a lack of empathy from health care providers, body image disturbance, social maladjustment, and lack of resources.9
LITERATURE REVIEW The literature review was based primarily on qualitative literature. Phenomenologic studies conducted by Livingstone et al10 and Delea et al8 via a series of one-on-one interviews and questionnaires taking account of the person’s lived experiences after amputation. Grounded theory was used in one study conducted by Livingstone et al10 to assess social processes and the participants’ mechanism of adjusting to bereavement after limb loss. A single quantitative study conducted by McDonald et al3 used validated tools to measure body image disturbances, anxiety, depression, and quality of life questionnaires with participants who underwent amputation.
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Livingstone et al10 interviewed one female and four males (n = 5) who were diagnosed with diabetes and had amputation of a limb. The researcher conducted audio-recorded interviews with each participant that lasted for 30–45 minutes. The participants were asked the same questions during the interview. The researchers decoded and categorized findings from the interviews into three categories reflecting similarities between participants’ experiences: (1) imposed powerlessness, (2) adaptive functionality, and (3) endurance leading to a path of perpetual resilience. Imposed powerlessness was reflected as participants’ reports of lack of education and knowledge deficit regarding their disease process.10 One participant stated, ‘‘I do not think people understand the complications with diabetes’’ (p. 23). The second category, adaptive functionality, was described as the physical aspects of an amputation. The researchers noted that participants described the feeling of helplessness and inability to ‘‘do the jobs’’ they were able before amputation. After amputation, the participants required assistance with basic activities of daily living such as bathing, dressing, and walking. Participants report a lack of sufficient home care services on discharge. At last, endurance was described by the researchers as the mechanism that the patients use to adapt and accept their new way of life after amputation. The participants describe feelings of ‘‘turmoil’’ and ‘‘fear,’’ whereas others state they felt a lack of confidence with mobility and social embarrassment.10 Limitations to this study are a small sample size and minimal variation in geographical location. Another qualitative study conducted by Delea et al8 obtained diabetic participants with active foot disease or amputation (n = 10) from the Prosthetic, Orthotic, and Limb Absence Rehabilitation Center. There was only one patient with active foot disease, and the other nine participants had lower extremity amputation. The researchers collected data through questionnaires and audio-recorded one-on-one interviews. Researchers found ‘‘a need for supportive interaction with health care professionals.’’ Most participants express that they would prefer emotional support alongside medical management of their condition.8 The researchers also report differences in education; some participants were experts in the disease process, whereas others report a lack of understanding with their disease process. Education and postoperative expectations should be standardized for all patients to ensure that everyone receives the same information.8 Participants reported discrepancies with incisional care instructed from providers. Geographic disparities and access to health care is reported. Participants stated that they are discharged home without adequate supply or resources along with a reduction in supportive home care services.8 A limitation to this study is small sample size. It was limited to Caucasian males, and therefore did not account for females or other ethnic backgrounds. Overall, the participants’ request for empathy, social support, and streamlined care instructions preoperatively and postoperatively may offer benefit for their postamputation recovery. A quantitative study conducted by McDonald et al3 compares rates of depression and conceptions of body image in diabetic patients with and without amputation. The researchers recruited their participants through diabetes and amputee associations. There were 240 diabetic patients without amputation and 50 diabetic with amputation. Researchers collected data using the
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Hospital Anxiety Depression Scale, a validated tool to measure anxiety and depression.3 In addition, the researchers used another validated tool the World Health Organization Quality of Life Brief to assess the patients’ quality of life by administering questionnaires to participants. A third validated tool, Body Image Disturbance Questionnaire was administered to assess body image disturbances via body dissatisfaction, distress, or dysfunction.3 There was no statistical difference between comparison groups on demographics, or medical and lifestyle variables (P = 0.185).3 Statistical analysis review of depression was statistically significant in the diabetic population with amputation (P = 0.011). Patients with amputation were more likely to experience higher levels of depression along with greater body image disturbances.3 A sample of convenience is one limitation of this study as the results may not be reproducible. The participants in this study are mainly males increasing the possibility of gender bias and limited generalization of findings.
GAPS IN CARE In synthesizing, the cited body of evidence study participants frequently requested information regarding dressing changes, activities of daily living, mobility, and incisional care after lower extremity amputation. Standardization of postoperative care instruction was another complaint noted in the literature.8 Participants voice concerns about inconsistencies in information regarding dressing changes, care of the amputation site, and their health care providers’ lack of compassion. Dissimilarities in the standard of practice created chaos for the psychologically fragile participants. Review of the literature reveals the lack of standardization for incision care at the amputation site. The literature review demonstrates a gap in communication between health care providers and their patients regarding care of an amputation due to diabetes.10 Participants often report a reduction in home care services and a lack of support once home.8 The patient who undergoes amputation is shown to have body image disturbances and experience challenges with social adjustments. Individuals express a need for spiritual guidance during the amputation process in conjunction with medication therapy.4 Addressing religious beliefs, communication, and supportive care before and after limb loss may provide transition through the grieving process, decrease the incidence of depression, and increase social adaptation.4,10 Researchers need to conduct further studies examining the role of body image disturbances and physical deterioration and its impact on psychosocial outcomes after amputation.3
RECOMMENDATIONS There is little research reviewing the psychological effects of limb loss in patients with diabetes. Variation among health care providers in postoperative care after limb loss causes confusion and increased anxiety for the patient. Participants in the reviewed studies also report a lack of communication between providers and their caregiver. Livingstone et al10 suggest the process of psychological healing should be discussed with the patient before amputation for enhancement of physical well being. Communication among health care providers is essential for consistency in the plan of care for the patient and their caregivers.
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According to participants in the reviewed studies, health care providers portray nonchalance and lose site of the psychological aspect of patients who undergo this procedure. A multidisciplinary approach in conjunction with fluid communication is imperative for successful passage through the grievance process for diabetic patients undergoing amputation. Further research is vital in influencing practice changes and factoring the psychological aspect of limb loss.
CONCLUSIONS The loss of a limb is a life-changing event. Uncontrolled diabetes in conjunction with poor wound healing is the number one culprit of limb loss. As the length of hospital stay grows shorter; clearer discharge incisional care for patients and their caregivers is essential. Preventive care is optimal in avoidance of limb loss; however, at times amputation is inevitable.11 Diabetes management is imperative to avoid future detrimental events such as limb loss. Patient education on diabetes control should be stressed, as most participants in the reviewed studies were unaware of the possibilities of limb loss due to diabetes. A multidisciplinary approach with the inclusion of a psychiatrist and pastoral care facilitates a smoother transition through the grievance process. Providers may view an amputation as ‘‘just another surgery,’’ however, to the patient, it is a deleterious loss. Most patients report a lack of provider compassion. Sensitivity courses should be offered to health care providers who care for this patient population. Standardization of postoperative care along with communication among health care providers, patients and their families and referral to support groups such as Amputee Coalition is essential for successful transition to a new lifestyle.
REFERENCES 1. American Diabetes Association. Statistics about diabetes: Overall numbers, diabetes and prediabetes; 2016. Retrieved from: http://www.diabetes.org. Accessed April 9, 2016.
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2. Advanced Amputee Solutions, LLC. Amputee statistics you ought to know; 2012. Retrieved from: http://www. advancedamputees.com. Accessed April 9, 2016. 3. McDonald S, Sharpe L, Blaszczynski A. Research: educational and psychological issues the psychosocial impact associated with diabetes-related amputation. Diabet Med 2014; 31:1424-30. 4. Bateup M. Spiritual grief and loss after an amputation. Aboriginal Isl Health Work J 2010;34(4):20-2. 5. Coffey L, Gallagher P, Horgan O, et al. Psychosocial adjustment to diabetes-related lower limb amputation. Diabet Med 2009;26(10):1063-7. 6. Nicolucci A, Kovacs Burns K, Holt RI, et al. Research: education and psychological issues diabetes, attitudes, wishes and needs second study (DAWN2): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med 2013;30:767-77. 7. Spiess KE, McLemore A, Zinyemba P, et al. Application of the five stages of grief to diabetic limb loss and amputation. J Foot Ankle Surg 2014;53(6):735-9. 8. Delea S, Buckley C, Hanrahan A, et al. Management of diabetic foot disease and amputation in the Irish health system: a qualitative study of patients’ attitudes and experiences with health services. BMC Health Serv Res 2015; 15(251):1-10. 9. Foster D, Lauver LS. When a diabetic foot ulcer results in amputation: a qualitative study of the lived experience of 15 patients. Ostomy Wound Manage 2014;60(11):16-22. 10. Livingstone W, Van De Mortel TF, Taylor B. A path of perpetual resilience: exploring the experience of a diabetesrelated amputation through grounded theory. Contemp Nurse 2011;39(1):20-30. 11. Goodney PP, McClurg A, Spangler EL, et al. Preventive measures for patients at risk for amputation from diabetes and peripheral arterial disease. Diabetes Care 2014;37: e139-40. Retrieved from: http://care.diabetesjournals.org/ content/37/6/e139.full. Accessed April 9, 2016.