“What Do You Want to Do With the Leg?” A Critical Narrative Review of the Understandings and Implications of Disposal in the Context of Limb Amputations

Introduction

Amputation, both emergency and planned, has significant consequences for understandings of the body and subsequent function of patients. Lower limbs are most commonly implicated in amputation, with 90% of all amputations suggested to involve a lower limb (Bradway, Malone, Racy, Leal, & Poole, 1984). Common reasons for lower limb amputation can be due to disease, such as diabetes, vascular disease, septicemia (including as a complication from acute illnesses such as meningitis) or due to external trauma or other serious injury to the limb. The prevalence rate for lower limb amputation in the United Kingdom is reported to be 26.3 per 1,00,000 (Ahmad, Thomas, Gill, Chan, & Torella, 2014), and it is suggested that rates of amputation may double by the year 2050 (Holzer et al., 2014). Amputation has been viewed as an increasing medical practice, due in part to an aging population and to increasing rates of diabetes and vascular disease among the population as a whole (NCEPOD, 2014). It is reported, for example, that there are currently over 7,000 diabetes-related lower limb amputations alone, occurring annually within the United Kingdom (Majeed & Molokhia, 2015).

Concerns have also recently been raised in relation to the lack of good care those undergoing lower leg amputation receive (Mayor, 2014; NCEPOD, 2014) and the higher mortality rate for U.K. amputation patients as compared with those in the United States. There is also a North–South divide in the United Kingdom in relation to the prevalence of amputation (Ahmad et al., 2014) in that patients in the North of England are more likely to experience amputation. Rationale for such divides and the reasons underlying poor care are seen as requiring further investigation (Ahmad et al., 2014; Mayor, 2014). However, these features can affect significantly on the experience of those patients undergoing amputation, thus are salient to note.

Much of the existing literature relating to amputation has explored the psychological implications of amputation, suggesting that “The psychological reactions of patients after surgical or traumatic amputation of a limb are both varied and complex” (Bradway et al., 1984, p. 46). Impacts on body image and self-identity are, however, seen as common in those undergoing amputation (Armstrong-James, 2015; Senra, Oliveira, Leal, & Vieira, 2012). Differences in experience and adjustment to amputation can be related to a number of factors, including whether the need for amputation is directly connected to mortality (Aravind, Shauver, & Chung, 2010) and the role of the amputation within the wider health issues of the patient. The aftereffects of amputation, including the adjustment of the altered corporeal form including prosthesis (Crawford, 2012; C. D. Murray, 2005), and the incidence and experience of phantom limb syndrome (Crawford, 2014) have also been recently explored within the small corpus of literature.

The body has increasingly been a site of social science interest, in that “. . . bodies or even body parts (cells, genes, organs, limbs, etc) are objects of importance that are ‘dissected’ in an effort to explore the processes underlying their emergence as interactional effects” (Crawford, 2012, p. 436) although the experience of amputation has itself received limited engagement within this, particularly about the experiences of limb loss (Senra et al., 2012). The literature relating to disposal remains even smaller, raising the question of why disposal of limbs has and continues not to attract research interest, even within the context of the renewing and flourishing wider social science engagement with understandings of the body (Crawford, 2012, 2014). This review then seeks to explore the relevance and implications of disposal in the context of lower limb amputation. In doing so, it examines the need for disposal to be situated within broader considerations of amputation and how disposal impacts on the decision-making process and experiences of patients and their families during the incidence of and adaptation too, the loss of lower limb(s).

Method

Examination of the existing social science literature demonstrates a dearth of work directly relating to the issue of disposal within the experience of amputation. Searches on key databases, specifically ACADEMIC SEARCH COMPLETE, CINAHL, MEDLINE, PSYCHINFO, for the terms “amputation” + “disposal” provides only 18 results, three of which included with the others being excluded as not relevant to the scope of this review. The remaining 18 papers included within this article were then drawn from Google Scholar, primarily using the search terms “amputation” + “Disposal,” as well as papers which were followed up in a purposive manner when key sources were found. This narrative review then draws on literature from the fields of psychology (such as around adaptation to amputation and psychological implications of amputation), sociology (such as texts around the body and embodied experience), medical and social scientific work around phantom limb syndrome and prosthesis as well as case reports and comment from medical professionals around amputation. Although 21 papers were specifically included in the literature, the paper draws in additional supporting information from other academic research as well as news and authority commentaries to examine the key issues identifiable around disposal in the context of amputation.

The diverse body of literature drawn upon demonstrates the lack of any significant corpus of work pertaining to disposal directly and the exploratory nature of this review. Given the challenge of finding literature relating specifically to the topic of disposal more generous inclusion criteria relating to date of publication has been utilized than perhaps one may otherwise do so for a narrative review (i.e., all dates have been included). Although some of the literature included here is dated, and contemporary thinking around the body and patient experiences has moved forward extensively within the last 50 or 60 years, why disposal featured in medical cases or commentaries historically, yet, is notably absent now remains an important rationale for inclusion of such works here. Papers were included based on their relevance, specifically if they were discussing amputation (lower or upper limb specifically), practices around disposal or methods for disposal of amputates and/or contributed to understandings that would contextualize disposal within the patient experience of amputation (i.e., discussions of bodily integrity, prosthetic technology, etc.). Given the dearth of available literature directly on the topic of disposal, an inductive coding approach was adopted, which is advocated as a useful method when the body of evidence is perceived as limited at the outset of the analysis (see Elo & Kyngäs, 2008), and key themes were then generated from this coding using a reflexive approach to thematic analysis as advocated by Braun and Clarke (2006). Thematic analysis is seen as a useful process for the analysis of secondary data (such as in literature reviews) and the now established six steps set out by Braun and Clarke (2006) for this method were utilized—with reflexive practice embedded at each stage. Final themes were then read by a colleague to check for coherence and final refinement was completed by the author.

This article then provides a starting point for exploring the landscape around disposal following amputation, starting from the research question of “what are the implications and understandings of disposal following amputation.” Three main thematic areas of literature were identified, relating to the individual experience, the social considerations of human “waste,” and the medical experience and context, and these aspects are explored below, before wider conclusions and suggestions for future research are outlined.

Disposal of Amputates: The Individual Experience

Existing literature points toward the consideration of disposal of the limb to be part of the adaptation process that patients may go through during the experience of amputation. Charmaz’s (1983) reflections of the experience of chronic illness could thus be seen as highly applicable to the context of amputation, “Chronically ill persons frequently experience a crumbling away of their former self-images without simultaneous development of equally valued new ones” (p. 168). The loss of limb also potentially entails a loss of self through the transgression and disruption of the corporeal form, thus adaptation to amputation is seen as a central focus for the process of “recovery” of the self from the loss of limb(s). Much of the literature on amputation then focuses around the period after the patient has undergone the amputation itself (Grech & Debono, 2014; Holzer et al., 2014; C. D. Murray, 2005). Disposal then receives very limited exploration, perhaps pointing to the act of amputation, itself viewed as a “violent intervention” (Shildrick, 2008), as the marker between the fixed corporeal “whole” and the new modified body and bodily experience, with disposal being a by-product of this and caught within the interregnum.

Early research into amputation suggested that “Grief is the universally identified reaction in those patients being told that they must lose a limb” (Bradway et al., 1984, p. 47). Although psychological and social disruption is viewed as a central feature of the experience of amputation (Armstrong-James, 2015; Holzer et al., 2014), grief can perhaps not be universally assumed, as understandings of the variance of both patients and their experiences becomes more widely understood, including evidence about elective amputations (Bayne & Levy, 2005; Müller, 2009; Patrone, 2009), which are sought by patients rather than being “solutions” to a health crisis. The grief or sadness patients may experience is seen as being focused on the loss of functions and changed future from that which may have been perceived (Bradway et al., 1984; Jansen & Baart, 2018; Senra et al., 2012), again focusing on the before/after dichotomy created by the act of amputation. Bradway et al. (1984) do, however, identify that in the preoperative phase for those undergoing nonemergency amputations that

Questions regarding the exact nature of function and use of a prosthesis, future sexual function, and even disposal of the amputated limb are all questions which are also prominent in the minds of potential amputees. (p. 47)

To borrow from the work of Crawford (2012), the amputate, can perhaps be viewed as part of the “apparent ‘residue’ of that which is no longer ‘me’ but still definitively ‘mine’” for patients (p. 445). One of the core reasons that patients who opt for reconstruction rather than amputation for severe lower limb trauma is reported to be due to the personal attachment to the limb “I don’t want to lose my leg because it’s mine” (Aravind et al., 2010, p. 2024). In that context, then the desire for patients to understand how part of their bodies will be disposed seems entirely understandable and may form part of the process of grieving and adaptation to the new sense of self. Auto-ethnographic work, such as that of Sobchack (2010) offers one of the few insights into the patient experience of disposal. Sobchack (2010) reports asking “where, indeed, was my leg?” after amputation (p. 55). Her enquires to health care professionals regarding what had happened to her amputated leg, were, however, met with no reply. Qualitative explorations with patients around this issue is then currently lacking from the literature and would be required to enable a more comprehensive understanding of the questions patients may have around disposal and their choices in light of these.

Some recent contributions from medical professionals demonstrates that some patients, in the way Sobchack (2010) was, are indeed raising concerns around the disposal of their amputate(s). Rudd (2014), for example, describes the concern of a patient regarding the disposal of his lower leg “He was concerned about the dignity and disposal of his leg, and that there was no guarantee that his leg would be reunited with his body during his eventual cremation on death” (Rudd, 2014, p. 28). Rudd further details the apprehension of what would happen to the leg was causing the patient stress during the preoperative phase and suggests that there is a “need for local guidelines for staff, and better information for patients, on what can be done with a limb after amputation” (Rudd, 2014, p. 28). Similarly, Marlow (2008) notes that he faced requests from patients regarding their desire to have their amputates cremated “After such a traumatic decision process, they might want their ashes as a memorial or simply consider how they would like their amputated leg treated with dignity” (Marlow, 2008, p. 774).

Recent work by Jansen and Baart (2018) examines the legal “ownership” of limbs and expresses the importance of doctors ensuring patients have been given the full options regarding disposal and sees this as an integral part of informed consent. They also usefully note the imbalance between knowledge around disposal after amputation between doctor and patient and thus stress that the doctor should ensure the patient is fully aware of their options and choices for good patient outcomes following amputation (Jansen and Baart, 2018). The discussion within these articles focuses around patients’ concerns around “dignity” for their amputated limbs, again echoing Crawford’s (2012) notion of me/mine and the desire for patients to have “closure” around the transition of their amputate from being part of them to not becoming part of them. As Blood (1956) notes,

It has been pointed out that patients experience the loss of an amputated part as if it were the loss of someone close to them whom they love; and that they expect the lost part to be cared for with due respect. (p. 122)

Given as Sobchack (2010) describes, that they are “our body parts- our bodies in parts” (p. 55), thus, it is perhaps understandable that patients would seek to know of and secure a dignified solution for the disposal of their “body parts.”

Although for some patients the process of amputation and the disposal of the amputate is part of the abject (Kristeva, 1982)—in that consideration of the detachment and then detached limb may be seen as grotesque or gruesome for some—for others the disposal of amputate(s) after their “last moment of life” (Crawford, 2012, p. 439) remains relevant to their psychological adjustment and adaptation to and through a process that entails “abandonment of the notion of integrated embodiment” (Shildrick, 2008, p. 34; Jansen & Baart, 2018). Riding (1976) reported that there were class differences around concerns about disposal, with those without higher education more concerned about the issue of disposal within the context of amputation. Solomon and Schmidt (1978) report that awareness of concerns around disposal can also help with the mitigation of phantom limb syndrome, a condition in which patients continue to “feel” their absent limb after the process of amputation, in that “The phantom appendage represents the organized impression of a person’s image of his body before loss of the limb” (Blood, 1956, p. 121). Solomon and Schmidt (1978) note the case of a patient who felt “burning” sensations in the “phantom limb,” which was ultimately attributed to the patients’ feelings of her limb being incinerated against her wishes. Similarly, Sherman (1996) reports of a case of water being poured on a burnt amputate to resolve phantom sensations of “burning” for the patient. Other historical medical cases similarly note the relationship between phantom pain, adaptation to amputation and disposal. Blood (1956), for example, describes a patient undergoing a second amputation, and that “It is believed that discussion with the patient, before the second operation, of the method of disposal of the limb and his knowledge of disposal of the first amputated part helped to alleviate his anxiety” (p. 116). Disposal can then for some patients be a source of anxiety, and lack of consideration to disposal can contribute to continued negative feelings after amputation, as well as being implicated within phantom limb syndrome itself. It does, however, appear that disposal itself is receiving limited considerations both in the abstract and practical sense, and that some health care professionals would like to see greater guidance and patient information to help support the process.

The Social Considerations of Human “Waste”

Those undergoing limb amputation creates what Leder (1990) terms “dysapperance” in that the body that is experiencing change or transformation is brought into the gaze (specifically in terms of the self-awareness in the sense Leder refers to, but such gaze could potentially encompass the broader social gaze if we extend our considerations of the modified body). Such processes go against the desire for “clean and proper” corporeal selves, as Shildrick (2008) notes,

we demand of modern biomedicine that all disruptions to the self’s “clean and proper body” should be dealt with, that the actual vulnerability of the embodied self and its propensity to diverge from the normative structures of health and well-being should be covered over. (p. 34)

Therefore, it is perhaps unsurprising within this context that disposal of amputates has received and continues to receive limited consideration within medical contexts and even within the academic exploration of the meanings and experiences of bodily transgressions. Although amputation can be seen in some instances as a means for forestalling permanent bodily disruption, that is, death, it does as Shildrick (2008) suggests, reduce “the corpus to its component part” (p. 34) and in doing so creates a paradox of expired bodily part yet a living body. In doing so, this then creates a challenge to our socially normative approaches to the disposal of the deceased. The amputate is then not a “proper body” (Shildrick, 2008, p. 32) but a “component part” and seen as “waste” rather than as deceased. As Marlow (2008) points out,

A crematorium cannot cremate any human tissue or organs from a living person. Paradoxically, patients are within their rights to sign for their leg and take it away with them; they may bury it themselves or burn it on a bonfire. (p. 774)

Thus, for the patient options for disposal are seemingly unconventional, in that they would require or involve the patient themselves undertaking or arranging the direct disposal of their own limb, and taking the notion of “a man [sic] is the master of his own body” (P. M. Murray, 1990, p. 109) to a new dimension.

Rudd (2014) also details the challenges of disposal within the clinical setting:

a hospital’s waste management service can incinerate a limb and return the ashes to the patient. Patients’ can personally dispose of their amputated limbs as long as this is done in accordance with the Human Tissue Act 2004 and the Cremation Regulation 2008, but crematoria cannot cremate human tissue or organs from a living person as certification of death is require to do this. (p. 28)

This further demonstrates the “otherness” of the amputate, neither living nor deceased, but rather a by-product of the necessary modification and maintenance of bodies to prevent their further discord. Patients may also struggle with knowing whether discussions around disposal are deemed “appropriate” as Blood (1956) notes of one case;

When asked if he knew what disposal had been made of the amputated limb, the man became panicky and said that he did not want to know. Then he quieted and said that he had wanted to ask but was afraid he “would be laughed at.” (p. 117)

Therefore, in the process of amputation and consideration of disposal not only do we see the desecration of the corporeal form, but we see a transgression of social norms regarding both our conversations around and the actual disposal of human tissue. This sense of transgression occurs due to amputation sitting at this liminal space, constructed from the power relationship of doctor and patient—in which patients, such as the one quoted in Bloods’s (1956) case study above, do not want to raise questions about the amputate, but also due to our norms around whole bodies and their disposal—something that society often struggles to discuss despite its regularity of occurrence. Social cues around disposal, therefore, appear to be lacking, and these are further reinforced by a lack of straightforward options for patients to make regarding their wishes for the disposal of amputates. Recent news reporting of the issue of disposal of amputates included comment from amputation patients, one of whom noted the possible need for patients to say “goodbye” to their limbs in the same way people may do after a death; “Whether or not it causes problems it is a part of you, and I understand the need to say goodbye” (Rowswell, 2016, cited in Parkes, 2016).

To deal with the need for options regarding the disposal of amputates, a chaplain from Sheffield Teaching Hospital has set up a burial space for limbs (Parkes, 2016). This is reported to be the first of its kind in the United Kingdom and its role or use in the management of disposal and possibilities it holds for helping patients in the adjustment to amputation is as yet uninvestigated. Such settings may, however, provide a social solution to the disposal of amputation, allowing for conventional practices for the bereaved to lay to rest the departed human, or limb, within the instance of amputation. Given that there is seen to be a broad-ranging experience of social disruption for amputees (Holzer et al., 2014) providing more normative solutions for those who wish to say “goodbye” to their former appendage may be fruitful as well as ethical position for medical professionals to offer (Jansen & Baart, 2018) as part of rehabilitation process for those adapting to amputation.

The Medical Experience and Context of Disposal

As noted earlier within this article, there is seen to be a lack of good care around amputation and it has been suggested that there should be “development of a ‘best practice’ clinical care pathway covering all aspects of the management of patients who need an amputation” (Mayor, 2014, p. 1). This pathway could usefully, given the role that questions of disposal may place in adaption and psychological well-being after amputation, also include consideration of disposal. Early work around amputation encouraged such considerations (primarily to help avoid phantom limb syndrome) “Discussing the methods of disposal of amputated parts with the patient before amputation and allowing the patient his choice of burial, cremation, or preservation of the part in fluid have been suggested” (Blood, 1956, p. 122). Recent work too calls for further exploration of this aspect as part of the care of those undergoing amputation;

Though this unusual experience, I also identified the need for local guidelines for staff, and better information for patients, on what can be done with a limb after amputation. Standard policies and procedures would help raise awareness of this issue and signpost patients and staff to the appropriate services. A person’s remains could then be dealt with in a way that respects their beliefs and end-of life decisions. (Rudd, 2014, p. 28)

Within the medical context of amputation, the outcome for the “lost” parts (Shildrick, 2010) seems often absent from the discourses, focusing more on the before and after, rather than the act and by-products (i.e., amputates) of “desecration” of the body. The existing literature on amputation displays a strong narrative around rehabilitation, seeing the aftercare for amputees as central to the avoidance of further psychological and social issues (Armstrong-James, 2015). The importance placed on the need for patients to access and adapt to a prosthesis, for example, is common within the literature, with the prosthesis noted as being an important means for maintaining body schema (Holzer et al., 2014). Prosthetics are, therefore, seen to have a social as well as pragmatic role, enabling amputees to maintain their presentation of the self (C. D. Murray, 2005). Although the need to “look forward” in terms of rehabilitation is not to be denigrated, it may, however, further serve to cast aside the process of amputation and the possible need for considerations in patient care around disposal. If, however, we take Bradway et al.’s (1984) contention that “with better understanding of an amputees’ psychological and physical needs, they need not become more disabled than necessary by the loss of their limb alone” (p. 50) then integration of considerations of disposal into patient care may be an important feature of the care pathway and best practice for those undergoing lower limb amputations. Although work such as Bradway et al.’s (1984) is now dated, the ideas within around the importance of patient-centered care that aligns to their beliefs seems as relevant now, particularly in the time of increasing patient-focused agendas around health care and self-management.

Discussion

Considerations of disposal are notable by its absence from literature around amputation and the medically necessitated alteration of the corporeal form. Although considerations of the psychosocial experience of amputation (Holzer et al., 2014; Armstrong-James, 2015; Grech & Debono, 2014; Senra et al., 2012), the use of prosthesis (Holzer et al., 2014; Crawford, 2014; C. D. Murray, 2005) and the embodied experience of incidences of phantom limb syndrome (Crawford, 2012, 2014) are evident within the literature that encompasses amputation, disposal remains underexamined. From the limited evidence, disposal is suggested to be a feature of preoperative anxiety for some patients (see Marlow, 2008; Rudd, 2014), and consideration of and assurances of dignity can be important to some patients in their acclimatization and subsequent adaption to amputation. More sustained and detailed exploration of this is, however, required to fully understand the individual experience and implications of disposal within the patient experience. Reflections on disposal could in turn shed light onto important elements of corporality, the embodied experience of amputation and our societal considerations of human “waste” and how we categorize and manage limbs that ultimately become amputates.

This review then also details how very early medical commentaries suggested that those who have unmet concerns around disposal are more likely to experience psychological distress from amputation or phantom limb syndrome (Blood, 1956; Bradway et al., 1984; Solomon & Schmidt, 1978), which will require subsequent management. Some medical professionals are also calling for more discussion around disposal of amputates (Jansen & Baart, 2018; Marlow, 2008; Rudd, 2014) and for better guidelines and practices. The founding of a burial space for amputates also demonstrates a perceived demand and need for means to address dignified disposal of amputates (Parkes, 2016). Simultaneously, evidence suggests that care for those receiving amputations is often not meeting best practice (Mayor, 2014; NCEPOD, 2014) and consent by doctors does not currently meet the legal and ethical situation relating to who “owns” amputated limbs (Jansen & Baart, 2018), thus a more patient-centered pathway for amputation could potentially usefully expand to include disposal. Given the rising rates of diabetes and other vascular diseases, it is time to consider disposal of amputates given that the incidence of amputation will increasingly affect more people (Holzer et al., 2014).

Our conceptualization and understandings of the body has within the social sciences become more nuanced and sophisticated in recent years, as Shildrick (2010) notes “What we are belatedly realizing is that the body, far from being a fairly standardized and self-contained entity, is highly plastic and rich in the possibilities of intercorporeality” (p. 12). Yet, the question of amputation, in raising the issue of something being “mine,” but no longer part of “me” (Crawford, 2012) demonstrates the liminal space that the amputate as anatomy/object occupies. The body is alive, but the limb is no longer part of it, and thus ceases to be part of the corporeal form. This is then echoed in the challenge of how to handle the wishes of patients around their former limbs—ready access to cremation or burial of amputates is restricted, being seen as the preserve of death of the “entire” body, rather than of parts. Cremation can be facilitated through medical incineration, but does, however, create connotations of amputates as “waste” rather than something that is mourned and grieved by the owner of those once functional limbs. Social practices for the dealing with the intact remains of humans, therefore, do not appear to be yielding to encompass the remains of those who have faced and mourned their limb(s) amputation.

We then need to know more about the experiences of disposal in the amputation experiences of patients, to establish its importance or relevance to them and to consider the decision-making process they may or may not have engaged with. Much of the literature detailing case encounters around the problems that the lack of consideration or discussion of disposal can cause is now significantly dated and requires updating. Religious principles have been indicated as being a component in why patients may state preferences around disposal, due to beliefs about how the body should be handled in death, and cultural differences around the practice of amputate disposal could also usefully be explored within this. The voices of those who have made decisions around disposal is, therefore, lacking from the literature around amputation, and only through further investigation with those to whom this directly impacts, patients, their families, and health care professionals can have better understandings of what guidance and support those groups may need in relation to decisions around disposal. Key avenues for exploration could include the following:

Understanding disposal in the context of amputation, therefore, offers potential, both in terms of understanding and potentially improving patient care and experience around amputation, particularly in the context of rising rates of amputation due to diabetes and questions about the adequacy of existing care, but also in terms of extending our understandings of the corporeal and specifically of how we consider body parts in the aftermath of their amputation from the embodied “whole” and the dichotomy of amputates belonging to patients but no longer physically being part of them.