Abstract
Amputation is a clinical intervention which can have substantial impacts on the patient’s quality of life and wellbeing, and the existing literature demonstrates how adjustment to amputation can be a long process for some patients. However, we know little about how patients are prepared psychologically or emotionally for undergoing amputation surgery. This paper examines the extant literature in relation to preparation for amputation surgery to explore the current knowledge and practices within this area. Through a narrative review (n = 14 studies) we have generated three key themes related to the psychological preparation of patients for amputation surgery; “Emotionality in preparation for surgery,” “Information provision and support” and “The role of Health Care Professionals (HCPs) and the multidisciplinary team (MDT) in preparation for surgery.” The pre-amputation period is one of great emotion for patients, and information and support is often seen as lacking in relation to preparation. Healthcare professionals, and specifically the MDT were seen as central in helping facilitate the preparation of patients, including delivering the appropriate quality and quantity of information to patients. This review offers insights and direction into how better psychological preparation of the amputation patient could be considered and included in clinical care.
Plain language summary
Research shows that having an amputation can be a life changing experience for patients and has significant impacts on their health and wellbeing. However, little is known about how patients are psychologically prepared for amputation surgery. This paper reviews existing research about how patients are prepared before having an amputation. This review was carried out to explore what is already known about this topic. 14 relvevant articles were found and reviewed by the authors. There were three main themes: “Emotionality in preparation for surgery,” “Information provision and support” and “The role of Health Care Professionals (HCPs) and the multidisciplinary team (MDT) in preparation for surgery.” These themes show the key issues related to the psychological preparation of amputation patients. The review shows that the period before amputation surgery is significant and patients can experience high levels of negative emotions such as stress and fear during this time. The articles show that healthcare professionals are key in supporting patients during this time by making sure they provide patients with appropriate information and allowing time for patients to ask questions. The review provides suggestions for how preparation for amputation surgery could be improved.
Introduction
Approximately 4,000 major lower limb amputations are undertaken due to vascular causes each year within the UK (Waton et al., 2020). The number of upper limb amputations occurring annually is not known, though is suggested to be around one in four of all amputations (Specialised Commissioning Team, NHS England, 2015). There are also amputations as a result of trauma and oncology causes. Clear figures on the numbers and types of amputations is largely lacking in the evidence base on amputations, although figures from 2010 suggest approximately 7,000 per year are undertaken in the UK (Robinson et al., 2010). With a rising incidence of diabetes and vascular disease, due to both an increasingly aging population, rising obesity rates and entrenched health inequalities which impact on vascular outcomes (Chaturvedi et al., 1998), it is predicted that amputation rates could double in the next thirty years (Holzer et al., 2014).
It is reported that the amputee patient population are largely older and suffering existing morbidities and co-morbidities, which contributes to the “notoriously high” mortality rates after lower limb amputation (Fortington et al., 2013). A European study of amputees in The Netherlands found that mortality rates were as high as 22% and that the median time to death was 20.3 months after amputation (Fortington et al., 2013). The National Vascular Registry Annual report of 2020 found that “The overall rate of in-hospital death in AKA [Above Knee Amputation] and BKA [Below Knee Amputation] patients analyzed together was 7.7% (95% CI [7.2%,8.2%]) and the 30-day in hospital mortality was 4.6% [4.2%, 5.0%] (Waton et al., 2020).” This demonstrates that mortality rates from amputations in the NHS are lower than those reported in other parts of Europe, such as discussed above, or in Scandinavia where mortality rates of 19% to 30% in the 30 days after amputation have been reported (Kristensen et al., 2012). Within the NHS we do see higher rates for those having AKA, and BKA are more likely to be alive at discharge, although 1 in 10 of BKA patients will be readmitted to hospital within 30 days of their amputations (Waton et al., 2020).
The procedure is therefore complex and patients are likely to be experiencing other co-morbidities which impact on their ability to both survive and recover from the procedure. Whether patients are able to utilize prosthetic technology after their amputation can have substantial impacts on outcomes in terms of function, mobility and independence after amputation. It is suggested that amputation level (e.g., above or below knee), age, existing physical fitness, and what is any other comorbidities are likely the best predictors of whether patients may be able to successfully access and use prosthetic technology after amputation (Kahle et al., 2016). Such factors mean that HCPs need to prepare patients for the possibility of post-operative outcomes that may include wheelchair use. The existence of co-morbidities for amputees may also impact on the ability of healthcare professionals to help manage the pain that patients may experience post-operatively. The pain of amputation is suggested to be “one of the most severe pains in human existence” (Neil, 2016, p. 107). Such pain is also reported as having a high incidence of becoming chronic in amputees (Perkins & Kehlet, 2000), therefore the outcomes of surgery may be increased pain or discomfort which can impact on a range of personal, social and economic aspects of the patient’s life. Ensuring that patients are clear on the risks, potential outcomes and impacts of surgery pre-operatively is therefore likely to be useful to help with their recovery and subsequent adjustment in the post-operative period.
Amputation is seen to have a range of impacts on patients and is frequently reported as being “life changing” (Darter et al., 2018). Psychologically, amputees are reported to have higher than average rates of depression and anxiety, and many report body image concerns (Woods et al., 2018). The period after amputation is seen as an emotive time and one which patients’ characterize by suffering, both physical and emotional (Liu et al., 2010). Whilst the experience of body image disturbance is often seen to be related to amputation itself, other psychosocial outcomes have been suggested to be linked to existing comorbidities that amputees may be experiencing (McDonald et al., 2014). Many patients report a loss of function and increased pain as a result of amputation (Darter et al., 2018). Gallagher et al. (2011) explored the impact of amputation on participation and the restrictions experienced as a result of disability and found that sports, leisure and cultural activities as well as employment are the areas amputees most routinely feel restricted from. Darter et al. (2018) similarly found that the return to work for those who have undergone amputations is often varied and variable. The ability to participate fully as patients would like to in social life after amputation is also seen to differ based on upper or lower limb amputations, highlighting how amputation is a heterogeneous experience (Gallagher et al., 2011).
Despite the challenges seen to exist as a result of amputation, some patients may experience post-traumatic growth, indicating that not all of the experience should be assumed to be characterized as negative (Liu et al., 2010). Support groups for amputees have been suggested to be a particular facilitator of such post-traumatic growth (Stutts & Stanaland, 2016). However, the suggestion by Gallagher et al. (2011) that 36% of those with amputations experience difficulty in living with dignity, demonstrates the significant impacts that amputation can have on some patients’ lives.
There is currently a paucity of research into the care of those undergoing amputations (Bosanquet et al., 2021), and this is particularly evident in relation to the pre-operative period for those scheduled to undergo an amputation, despite the recognition that the pre-operative phase is crucial in the patients care and treatment journey (Virani et al., 2015). Despite this, we still see limited research and evidence related to this pre-operative phase of amputation care, and specifically around how patients are prepared for undergoing amputation(s). Liu et al. (2010, p. 2157) noted that,
During the pre-amputation and early post-amputation phases, participants reported the perception that their providers were generally focused on the surgery, avoidance of complications and wound healing. In contrast, individuals who were either preparing for or in the acute stages of recovery from amputation surgery reported that their focus was coping with fear and anxiety, questions about the future, the impact of amputation and the “nuts and bolts” of what they should do and expect after amputation
This therefore suggests that there may be an imbalance between what occurs in clinical practice and the perceived needs or wishes of patients relating to preparation for amputation, and our needs to understand more around this preparatory phase for prospective amputees. This review therefore brings together, for the first time, the existing evidence relating to pre-operative preparation of patients undergoing amputations, to explore the key themes in the extant literature in order to understand key areas for future exploration in research.
Method
In August 2021, six databases searches were conducted (including Academic Search Premier, Academic Search Ultimate, PyscARTICLES, PsycINFO, CINAHL, and MEDLINE). Appropriate search terms were constructed by reviewing key words, abstracts and titles from papers relating to pre-amputation preparedness of amputation known to the authors and found through an initial scoping search. Search terms included: Amputation OR amputee* OR “limb loss” AND preparation OR preparedness OR readiness OR psychological OR “mental health” OR pre-op* OR surgery OR experien*.
The review includes peer-reviewed, English-language journal articles that examine patients experiences of psychological preparedness before undergoing an amputation of upper and lower limbs. Given the lack of literature related to this topic, a broad inclusion criterion was utilized to include qualitative and quantitative studies and no age limit on participants or country of study were imposed.
Papers solely investigating mobility and physical preparedness for patients, psychological care after amputation, carer perspectives or the medical features and procedures of an amputation were excluded. Commentaries, opinion pieces and clinical case studies were also excluded. The review did not apply a specific date restriction, but the results of the searches are all papers from the last 25 years. Papers investigating combat or war related amputation were also excluded, as well as studies focused on mastectomies, given the different care pathways offered as a result of breast cancer. Opportunities for preparation offered by healthcare professionals in the pre-operative period are likely to be dependent on the urgency of the surgery itself, such as in acute and trauma settings, where medical care would be prioritized over the psychological preparation of the patient. This review therefore also excluded papers that explored the experiences of patients who have had an amputation within an acute or trauma setting, and instead, includes amputations as a result of vascular and diabetic causes and limb amputations as a result of cancer. Though it is acknowledged that emergency amputations may also be carried out as a result of diabetes or vascular issues, some element of preparation is likely to be offered to patients in the pre-operative discussions. In total, 14 articles were selected and analyzed for this narrative review (see Table 1 below for study characteristics).
Study Characteristics.
The included studies and reviews were closely reviewed using a thematic approach to identify core themes. This approach was focused on what articles reported about patients’ experiences of psychological preparedness before undergoing an amputation. Reflexive Thematic analysis (Braun & Clarke, 2006) is advocated as a useful process for the analysis of secondary data (such as literature reviews) and recommended as a useful method where evidence on the subject of enquiry is limited, such as in this instance surrounding psychological preparedness pre-amputation (Elo & Kyngas, 2008). Braun and Clarke’s (2006) established analytical steps were followed using an inductive coding approach. The first step included the process of “open coding” where significant issues from each article were selected and named for each article. Open codes were collated by one author (SL) and organized under overarching themes, including relevant quotations, which were then discussed and refined by both authors. For example, the codes “well-being,” “negative emotions,” “acceptance,” and “emotional support” were grouped under the substantial theme “emotionality in preparation for surgery.” The themes were agreed by both authors and were employed as the structuring framework for this paper. This procedure allowed the extraction of recurrent themes about the understanding and experiences participants have around the preparation stage of an amputation.
Three themes were generated during the review of the literature, including “Emotionality in preparation for surgery,” “Information provision and support,” and “The role of HCPs and the MDT in preparation for surgery.” This article provides a starting point for understanding the way in which patients are prepared for amputation surgery, related to aspects of the individual experience, which are explored further below. The article then offers wider conclusions by drawing on additional supporting information from other academic research and commentaries to examine some of the key issues highlighted by this paper, around the preparation of patients for amputation surgery.
Emotionality in Preparation for Surgery
Individuals who are awaiting amputation surgery report experiencing a range of emotions. Feelings of fear, anxiety, sadness and depression have been reported in a number of studies, demonstrating the negative emotional state patients may experience during the pre-operative stage (Bergo & Bazanelli Prebianchi, 2018; Delea et al., 2015; Gallagher & MacLachlan, 2001; Hamill et al., 2010; Pedlow et al., 2014; Senra et al., 2012; Sjodahl et al., 2007). Accepting the decision for an amputation can be emotionally challenging for patients and lead to initial rejection or denial of their imminent surgery, even when they do understand it is a medically necessary procedure(Bergo & Bazanelli Prebianchi, 2018; Liu et al., 2010; Sjodahl et al., 2007). Liu et al. (2010) describes the experience of learning about the necessity of the amputation as an “emotional collapse,” where patients may also experience feelings of helplessness, isolation and a loss of control. One participant in Liu et al.’s (2010, p. 2155) study spoke about their reaction upon learning about their amputation prognosis:
…I knew I needed to make the decision as soon as possible to save my knee. However, I was so scared that this would mean I would have to lie in bed the rest of my life. I thought that if I couldn’t walk by myself and have an independent life after amputation, then I would prefer to die now … I would not be an intact person. I felt that I couldn’t control my life anymore….
As Liu et al. (2010) reports, suffering as a result of physical pain and discomfort leading up to an amputation is common, however emotional suffering can be “endless” as participants experience worry and anxiety about their future quality of life and prospects.
Amputation may be easier to accept emotionally for participants who’s wound or illness is causing a significant amount of pain (Hamill et al., 2010; Pedlow et al., 2014; Sjodahl et al., 2007). Therefore, having a “solution” to resolve physical pain may be seen as making the potential “emotional pain” of the amputation easier for some patients. The papers examined here also note that gender and age differences may play a role in the extent to which feelings about an imminent amputation are expressed and coped with. For example, Abouammoh et al. (2021) found that older participants had more resilient attitudes around their amputation, were more likely to attribute their surgery to “destiny” and overall, experience improved physical and emotional adjustment. Liu et al. (2010) also found that women undergoing an amputation are more expressive with their feelings and more likely to communicate their needs to healthcare staff, whilst men feel more discouraged to show emotion. However, the studies overwhelmingly highlight the necessity for emotional support during the pre-operative stage of an amputation for all patients, regardless of the cause for amputation or the patient’s characteristics.
The experience of undergoing an amputation can be extremely traumatic and is associated with a number of emotional consequences such as anxiety, suicidal ideation, and fear of recurrence for those who have had an amputation as a result of a disease such as diabetes or cancer (Martins et al., 2019). As Martins et al. also highlights, the emotional well-being of a patient can significantly impact the way patients cope with and experience physical symptoms and disabilities as a result of their amputation. There is a reported need for specialized pre-amputation counseling aimed at delivering key patient information as well as psychological support, however many patients in the studies highlight that counseling is not a part of standardized practice (Bergo & Bazanelli Prebianchi, 2018; Clerici et al., 2004; Furtado et al., 2017; Gallagher & MacLachlan, 2001; Pedlow et al., 2014). One participant in Gallagher and MacLachlan’s (2001) study stated,
I think initially, there should be some kind of counselling … from day one. As I say, it was in, out, it was like getting a tooth out. The only counselling I got was the pilot showing me the limb. That was the only thing that helped me get my head sorted out. (p. 92)
The provision of counseling as a formalized practice in amputation care is strongly encouraged and can have specific benefits for providing emotional support in the pre-amputation stage.
Information Provision and Support
An amputation is a life-changing procedure, that has important psychological, social, physical implications for the patient. The papers examined all noted that continued information provision throughout the amputation process can help with the recovery and understanding of the experience of amputation. It is suggested that information is “closely related to enhancing coping and helping participants to plan for the future” (Pedlow et al., 2014, p. 95). However, currently there is no standardized pathway for healthcare professionals to provide pre-operative information to patients (Pedlow et al., 2014).
The studies reviewed here largely suggest that patients often receive insufficient information before undergoing an amputation, and that these insufficiencies are across a range of topics including the potential risks and complications of the surgery (Pedlow et al., 2014), prosthetic use and rehabilitation (Furtado et al., 2017) and social rehabilitation and adjustment after the amputation (Torbjörnsson et al., 2017). A research participant with a lower limb amputation as a result of diabetes in Delea et al.’s (2015, p. 5) study stated that:
…nothing was explained to me properly … I didn’t get the proper information [about] what could happen. They had no diabetic centre in the hospital that you could go to someone to talk to and find out more information.
Being unable to comprehend the overall process by receiving limited information before an amputation can have a negative effect on patient’s well-being, by increasing feelings of anxiety and limiting their perceived amount of control over their situation (Pedlow et al., 2014; Sjodahl et al., 2007). A small number of studies reported positive pre-operative experiences in relation to the amount of information received (Delea et al., 2015; Furtado et al., 2017; Gallagher & MacLachlan, 2001), although the lack of information received by many other participants indicates a clear need to improve the provision of information to patients to enhance their post-operative adjustment, both physically and psychologically.
The literature shows that patients have clear ideas about the topics of information they perceive are important to receive before undergoing an amputation. These topics include information about the nature and risks of the operation, aftercare, rehabilitation, mobility and prosthetic use, well-being, and community support (Bergo & Bazanelli Prebianchi, 2018; Clerici et al., 2004; Gallagher & MacLachlan, 2001; Hamill et al., 2010; Pedlow et al., 2014). As Pedlow et al. (2014, p. 95) suggest, “it is vital that information on the overall process be included when sharing information with patients.” Qualitative explorations of amputation experiences offer insights into the difficulty’s patients face in returning “to reality and to ‘find themselves’ again” (Sjodahl et al., 2007, p. 1199), however education and guidance around these topics can help patients to adapt to their post-amputation selves and improve their overall quality of life. It is therefore essential that topics identified by patients are embedded into the care that they receive to increase patient knowledge and support psychosocial well-being and coping.
The desire to meet others who had also undergone an amputation was also strongly advocated by a number of patients across the included studies (Furtado et al., 2017; Gallagher & MacLachlan, 2001; Hamill et al., 2010; Loucas et al., 2017; Pedlow et al., 2014). Having the opportunity to talk with another person who had gone through a similar surgery was perceived to have a number of therapeutic and educational benefits for patients. For example, it could show them that rehabilitation is possible, give patients the opportunity to ask questions that HCPs may not be able to answer and has been found to improve post-surgical outcomes overall (Clerici et al., 2004; Gallagher & MacLachlan, 2001). As Gallagher and MacLachlan (2001, p. 13) found, “being able to see and talk with someone who had a limb amputated and discover what their abilities were was important in establishing a belief that they could to achieve this.” For some patients, this was viewed as more important than meeting with doctors, yet the majority of patients found it hard to access or were not given the opportunity to meet other amputees (Gallagher & MacLachlan, 2001). It is therefore recommended that preparatory amputation measures, as standard, allow patients access to former patients as part of the information provision about the process and experience of amputation to afford patients the opportunity to gain information directly from those with lived experience. This could be part of measures to facilitate greater preparation for surgery and physical and emotional adjustment subsequently.
Several studies reviewed here offer insights into the unique needs and preferences patients have in relation to the amount and type of information provided, the timing of when information is given during the amputation process and the mode of information delivery. Patients may not always be ready to receive and take in information provided by HCPs because of the levels of pain they are experiencing as well as their emotional state at the time (Bergo & Bazanelli Prebianchi, 2018; Clerici et al., 2004; Furtado et al., 2017. Pediatric patients who require an amputation, and their parents and caregivers, also have specific needs in regards to the information they receive about the surgical plan to reduce the family’s distress (Loucas et al., 2017). As Pedlow et al.’s (2014) study highlights, HCPs should take into account a range of needs and preferences when delivering information to amputation patients’ pre-surgery, to provide individually tailored and empathetic care:
…it is essential for HCPs to facilitate a unique interaction with each patient to fully understand the underlying purpose for receiving information. This finding is important for HCPs to understand; not only are they delivering information to the patient to provide facts, but they are also assisting with the patient’s ability to psychologically cope with having a major lower limb amputation (p. 96).
The role of HCPs and the multidisciplinary team in preparation for surgery
The interactions between patients and health care professionals has a direct impact on the experience of the pre-operative stage of an amputation. Although patients differ in regards to their needs and preferences in relation to information delivery, the studies reviewed here overwhelmingly highlight a need for HCPs to recognize the emotional complexities and challenges experienced by patients during the pre-operative stage of an amputation (Abouammoh et al., 2021; Delea et al., 2015; Loucas et al., 2017; Sjodahl et al., 2007). Alongside provision of medical care, such as the management of existing illness or wounds, studies show that distress among patients can be reduced by HCPs who are empathetic and understanding of the patient’s psychological needs (Delea et al., 2015; Sjodahl et al., 2007; Torbjörnsson et al., 2017).
In the studies explored here, many patients reported negative experiences with HCPs during the pre-operative stage of their amputation. Some patients reported being treated “like an object” by health care staff (Sjodahl et al., 2007, p. 1202) and others have spoken about the “blunt” and “direct” manner in which some HCPs deliver life changing a medical prognosis. Whilst the discussion of an amputation may be routine for professionals, for patients it is the start of often a life altering procedure, and something which can affect them profoundly. One research participant in Delea et al.’s (2015, p. 4) study spoke about the way in which a surgeon informed them about their amputation prognosis:
…he came into me one morning – into the ward and he says, I’m going to take your leg off … he just frightened the life out of me … he didn’t even introduce himself at all. Shock!
Patients can then be easily scared by the impending procedure, and the need for an amputation can sometimes come as a surprise, whereas professionals already have the knowledge that it could be needed by the time they broach the topic with patients. The need for patient-centered care for amputation patients has been recognized across the literature, given the large diversity in patient experiences and characteristics (Pedlow et al., 2014; Torbjörnsson et al., 2017). By being sensitive to the needs of the patient and understanding the emotional challenges experienced during the amputation process, HCPs can provide patients with a sense of control and trust and improve their adjustment and coping throughout the amputation process overall. Sjodahl et al. (2007, p. 1192) notes that:
Patient-centred care has several dimensions, i.e., understanding the social and psychological consequences and the meaning of the illness to the individual, sensitivity to the degree of involvement and how much information the patient wants, ability to form a therapeutic alliance and awareness of how each individual’s personality and subjectivity affects treatment.
Many studies reviewed here demonstrate a disconnect between patient needs and the service provided by health care professionals, particularly in relation to how patients psychological needs are dealt with (Pedlow et al., 2014; Sjodahl et al., 2007; Torbjörnsson et al., 2017). To improve the process of delivering patient education during the pre-operative stage, studies emphasize the need for patients to be given the opportunity and time to ask questions and for HCPs to encourage patients to participate in decision-making about their care (Clerici et al., 2004; Delea et al., 2015). Adopting a model of care in which staff offer a personal approach, by listening and responding proactively to patients needs and information provision is likely to have a positive impact on enhancing patients coping and adjustment process (Pedlow et al., 2014).
In order to support long term recovery and prevention of future intervention, Clerici et al. (2004) further highlights a need for a multidisciplinary care team that focuses on the physical, psychological and social challenges of an imminent amputation. Ensuring that patients are in contact with staff with specific psychological training can also help patients and their family members adjust to the disruption caused by an amputation (Clerici et al., 2004, p. 404). As Clerici et al., argues:
Psychological support must be provided at various stages and on different levels, by the whole treatment team and also by staff with specific psychological competence. Its aims are to provide emotional containment for the anguish associated with the prospect of amputation, to evaluate defense mechanisms adopted by the patient, and to treat maladaptive conditions, with the final purpose of integrating the experience of disease and amputation in a tolerable perspective of life.
The healthcare team must therefore include all the professionals that amputees may require, and although resources and access to psychological therapies can often be limited, the studies here suggest the value of ensuring the multidisciplinary team is broad in its remit to achieve good outcomes for patients.
Discussion
The papers explored within this review offer insights into the aspect’s patients would value in terms of pre-operative preparation and care when undergoing amputations, and in doing so, highlight areas where practice is currently not meeting the expectations of patients. The themes examined here highlighting the strong impacts of emotions in that pre-operative phase, the need for meaningful information provision and support and the role of the healthcare professionals in the preparation of patients, show how uncertain the pre-operative phase can be for patients. As Butler et al. (1992) note,
Increasingly, surgical amputation is performed for patients with chronic disease processes, so that such patients constitute the majority of the amputee population. Because these patients and their families are at risk for a difficult psychological adjustment, attention should be directed to the preoperative period, when preparation has been shown to diminish long-term complications (p. 72)
The preoperative needs of patients do of course differ due to the individual variation in responses to the need for an amputation (Butler et al., 1992), but as our review shows, commonalities across patients’ needs in the pre-operative period can be found. In including a range of papers in English language, we have research from across different countries, thereby showing commonalities around patients’ needs even when the patients reside in a range of countries with vastly different healthcare systems.
One core aspect of patient need is around good information which can help with managing the emotions patients feel, such as anxiety and fear about their surgery, as well as being a clear entry point for professionals to have discussions about all aspects of surgery and subsequent recovery and rehabilitation. A recent James Lind Alliance Priority setting partnership, ranked “How do we improve the information provided to patients undergoing amputation?” as the fifth most important priority for amputation care and research in this area (Bosanquet et al., 2021). This demonstrates that there is an awareness and importance being placed on the need for more information for amputees, and that the agendas’ being selected to focus within amputation research are also borne out in existing literature in this area. Wider evidence in the surgical literature shows a direct correlation between reduced anxiety levels for surgery in patients who have had good levels of information (Kiyohara et al., 2004) however, the type and volume of information is pertinent:
…it would be reasonable to consider that not just any information would reduce anxiety, but the attending physician has to know the right form and amount of information to provide. (p. 54)
Healthcare professionals therefore have an important role in tailoring information provision to help with pre-operative preparation and it is important to note that a “one size fits all” approach, such as provision of a leaflet which is common in many clinical settings, may in fact fit no one. As others have noted, the type and quality of patient focused vascular information on the internet is often poor (Soot et al., 1999), which is important as patients may engage with material online which could be misleading, and this reinforces the importance of good quality information coming from professionals or those with lived experience, such as other amputees.
Our review demonstrates how involving existing amputees in preparation could have a potential positive role for those undergoing amputations. As others have noted, the use of peer support for amputation is relatively risk free and a low- cost intervention (Reichmann & Bartman, 2018). Whilst the evidence for the role of peer support in improving outcomes for amputees is largely tacit, it is highly supportive and a review of the evidence identifies that the pre-operative period could be a useful juncture for peer interventions (Reichmann & Bartman, 2018) which supports our findings here. It is also believed that participating in peer support work, such as a peer supporter, has benefits for the supporter also, such as finding positives in their own amputation experiences or gratitude for their circumstances, and providing social connection and reduction of isolation (Richardson et al., 2020). The wider use of peer support in the pre-operative period could therefore have benefits for both those about to undergo amputations as well as those who are post-operative and further in their adjustment to amputation.
Peer support however is only one part of the picture and the evidence examined in our review points to the clear role and importance of healthcare professionals and the multidisciplinary team in preparing patients for their amputations. As we have discussed elsewhere (Hanna and Robert, 2021) amputation patients may use professionalism of staff as a marker for what they perceive is “good care.” Feeling listened too and included in the discussions and decisions by staff was an important way in which patients felt that staff could display such professionalism. The nursing literature supports the involvement of nurses in the pre-operative psychological preparation of patients undergoing amputations (Ellis, 2002), with trust and empathy seen as vital components of developing a supportive therapeutic relationship with patients. Recent research suggests that greater understanding by medical staff of the emotional aspects faced by patients undergoing amputations could help engender greater “attachment, respect and compassion” (Roşca et al., 2021).
Preparation for amputation does however require a team approach, and historically this is how amputation care has been managed, drawing on the skills of relevant areas of clinical expertise (Sanders et al., 2010). The National Confidential Enquiry into Patient Outcome and Death (NCEPOD, 2014) report stated that care pathways should involve a multidisciplinary team pre-and post- operatively, and The Vascular Society’s (2016) best practice clinical care pathway for amputation surgery has operationalized this recommendation. Therefore, we see the aim of MDT care embedded in practice pathways, but whether teams could be widened to include counseling and psychological therapies, which would provide patients with the emotional and psychological support the extant literature suggests is required, is something that clinical care settings could further usefully consider and which is suggested in emerging literature on the psychological impacts of amputation for patients (Roşca et al., 2021).
In this review, papers that explored the experiences of amputation in acute and trauma settings were excluded, as urgent medical care is likely to take priority over psychological preparation of the patient. This review focused on the experiences of diabetes or vascular related amputations, yet it is recognized that these may to be carried out in an emergency setting in some cases. The findings can therefore be considered in relation to settings where patients do have adequate time to prepare for an amputation who often report, as this review shows, that psychological preparation is needed to support adjustment and recovery.
The limitations of this review must be considered in relation to the depth and breadth of literature available. There is not a large corpus of work in this area and some research included in this review was carried out over 20 years ago and perhaps does not represent current practice around the preparation of amputations given the scale of changes to healthcare services and patient care during this time period. The age of some of the literature is therefore a limitation of this review. Additionally, whilst studies are beginning to increase in relation to “prehabilitation,” often this focuses on physical preparation of patients rather than the psychological aspects we have examined here. We have included papers which cover a range of countries, our inclusion was limited to papers written in English, further research including papers in other languages may also help to understand more the global perspectives on the preparation of patients for amputation surgery. The included papers were critically appraised to ensure they were robust, though some did include scant methodological details. Further studies in this area should include rigorous details of the sample and healthcare system in which patients reside and greater inclusion of patient voices about what matters to them in relation to preparation should be championed, particularly in the clinical rather than the social science literature where there is a particular dearth of such narratives.
Conclusion
The studies examined here offer important insights into aspects that could be further considered in the care of those undergoing amputations, to help improve adjustment to amputation and subsequently outcomes. Such outcomes must be considered broadly, including not only physical markers of health, but mental health and wellbeing, quality of life and associated functional measures, as all of these are pertinent to the ability of amputees to adjust too and assimilate their loss of limb(s) into their everyday life. By considering the information requirements of patients, this may assist a range of healthcare professionals, including surgeons, nursing staff, as well as the range of allied health professionals who support amputation patients, to support the delivery of such information in empathetic ways in the pre-operative phase to help with the wider management of the complex emotions that patients may experience during this period. Ellis usefully captures the value of these aspects being addressed:
Psychological preparation is vitally important both for the patient and his/her family so that the patient’s optimum preoperative health status can be attained. It is well documented that patients who are psychologically prepared recover quicker and experience less postoperative complications and levels of anxiety (Ellis, 2002, p. 157)
This review then offers some directions for consideration in clinical practice, namely around what type of information is given and by whom, the further consideration of the emotional aspects of amputation by professionals and how this can be supported and managed in the multidisciplinary team environment, including seeing peer supporters (e.g., amputees from third sector organizations) as an integral part of any such teams. Whilst the focus of this review is specifically amputations, some of the suggestions with regards the need for greater emotional support for patients and preparation ahead of operations, could be applicable to a range of surgical areas that support patients through multidisciplinary care.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This review was funded by the National Institute for Health Research (NIHR) Advanced Fellowship. Grant reference: NIHR300631. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Data Availability Statement
Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.