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Troubling dimensions of heart transplantation
  1. M Shildrick1,
  2. P McKeever2,
  3. S Abbey3,
  4. J Poole4,
  5. H Ross3
  1. 1
    School of Sociology, Social Policy and Social Work, Queens University Belfast, Belfast, UK
  2. 2
    Bloorview Research Institute, University of Toronto, Toronto, Canada
  3. 3
    Multi Organ Transplant Program, University Health Network, Toronto, Canada
  4. 4
    Ryerson University, Toronto, Canada
  1. Margrit Shildrick, School of Sociology, Social Policy and Social Work, Queens University Belfast, University Road, Belfast BT7 1NN, UK; m.shildrick{at}qub.ac.uk

Abstract

Heart transplantation is now the accepted therapy for end-stage heart failure that is resistant to medical treatment. Families of deceased donors routinely are urged to view the heart as a “gift of life” that will enable the donor to live on by extending and sustaining the life of a stranger. In contrast, heart recipients are encouraged to view the organ mechanistically—as a new pump that was rendered a spare, reusable part when a generous stranger died. Psychosocial and psychoanalytic research, anecdotal evidence and first-person accounts indicate that after transplant, many recipients experience unexpected changes or distress that cannot be understood adequately using biomedical explanatory models alone. In this paper it is argued that phenomenological philosophy offers a promising way to frame an ongoing empirical study that asks recipients to reflect on what it is like to incorporate the heart of another person. Merleau-Ponty and others have posited that any change to the body inevitably transforms the self. Hence, it is argued in this paper that replacing failing hearts with functioning hearts from deceased persons must be considered much more than a complex technical procedure. Acknowledging the disturbances to embodiment and personal identity associated with transplantation may explain adverse outcomes that heretofore have been inexplicable. Ultimately, a phenomenological understanding could lead to improvements in the consent process, preoperative teaching and follow-up care.

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This paper results from an ongoing interdisciplinary collaboration among the five authors who are studying heart transplantation in the Multi Organ Transplant Unit, University Health Network in Toronto, Canada. The authors are a cardiologist (HR), a psychiatrist (SA), a sociologist (PM), a social work researcher (JP) and a philosopher (MS). A small, empirically based study (n = 30) of how recipients understand and represent the phenomenological experience of heart transplantation is under way. The interviews with respondents—all of whom have received a donor heart during the past 10 years—have been audio- and video-recorded in order to enable an analysis not simply of their spoken words, but of their expressions and gestures during the process. Ultimately all interviews will be reviewed and coded by the full team according to themes and concepts that cover both our expectations and the surprises that emerge from the recorded material. A clear pattern that corresponds with our expectations is already apparent, but we do not intend to report results at this stage; rather we want to set out the themes and concepts that are guiding our analysis. We hypothesise that:

  • disturbances to self-identity and to bodily integrity commonly occur in heart transplant recipients;

  • identity disruption is associated with adverse outcomes;

  • the machine model of the body discourages recipients from discussing feelings of disruption;

  • long-term recovery of recipients would be enhanced if preoperative and postoperative care were supplemented by attention to what it means to be an embodied self.

The ethical and practical implications of our project are yet to be assessed but, we suggest, will be highly relevant to the current climate, in which organ transplantation of all types is seen unproblematically as beneficial and effective. Meanwhile, we believe that our initial theorisation of the issues in question may encourage others to engage in similar research.

In industrialised countries, transplantation is the treatment of choice for patients with advanced cardiac failure when other options have been exhausted. Given continuing improvements in surgical techniques, post-transplant monitoring and individualised drug regimes, the number of transplants performed is constrained less by the risks inherent in the procedure than by the shortage of donor hearts. Accordingly, there are regular appeals to the public to sign organ donation cards, and also calls for presumptive consent to organ donation,1 2 most recently from the UK government, which seems inclined to over-rule the rejection of such a strategy recommended by 2008 report of the UK’s Organ Donation Taskforce.3 4 While most transplant professionals seem to view donors’ bodies in biomedical or mechanistic terms, as repositories of immensely valuable and reusable spare parts, donor families are encouraged to perceive the heart as a cherished fragment of the deceased that has the potential to live on within, and extend the life of, an extremely ill stranger.57

The procedure of heart transplantation has been performed for over 40 years, but critical commentary on this dramatic intervention is overshadowed both by the powerful “gift-of-life” discourse and by the clinical focus on the efficacy of technical procedures and clinical care. Such approaches inevitably focus on the donor or on the process itself, positioning the recipient as a passive figure whose continuing survival and interests are entirely biomedically determined. In contrast, this paper attends to heart recipients and posits that successful outcomes cannot be anticipated using biomedical or psychosocial markers alone. We argue further that qualitative—rather than quantitative—modes of analysis are needed to reveal how their postoperative well-being relies in considerable part on what it means to be an embodied self. Rather than understanding the body as the biomedically manipulable housing of the self, we propose a phenomenological approach to the problematic, in which the materiality of flesh and blood is inseparable from the question, “Who am I?” Acknowledging the disturbances to embodiment and personal identity that organ transplantation entails will, we hope, lead to new understanding of some puzzlingly adverse outcomes of transplantation, as well as to improved consent processes, preoperative teaching and follow-up care.

The conventional Western expectation—derived from Descartes8 and Locke9—is that one’s sense of identity is a matter of mind, a core self that continues essentially the same over time, regardless of physical interventions into the body. Although it is now widely agreed that the mind and body are significantly interconnected, the early model of a split still underlies much biomedical practice. Despite the transplanted DNA of organ donors remaining distinct within recipients’ bodies, it is our experience that many transplant recipients voice the mantra “I’m still the same person” or its variants. It is perhaps unsurprising that threats to the stability of their supposedly disembodied core identities remain deeply unsettling and that a significant proportion of heart recipients report disturbances to their self-awareness, both as bounded and unique individuals, and as individuals distinct from others.10 11 Accordingly, we posit that a more phenomenological process is at work and that valuable insights into recipients’ experiences of transplantation may be derived from the phenomenologist Merleau-Ponty.12 13 His understanding of the body decisively rejects the mind–body split and insists that the two are always intertwined to constitute a single entity. The body is never merely an object—something that I have or own—but is the very condition of being a self at all. According to Merleau-Ponty, we do not simply inhabit our bodies, but realise ourselves through embodied connections with others, such that the phenomenological self is not autonomous and distinct, but is in a process of mutual construction. Moreover, when corporeal changes occur, they inevitably signal changes to the embodied self. More recent phenomenologists have extended Merleau-Ponty’s concern with the external body to take account of the viscerality of the interior organs and tissues.14 From this perspective, organ transplantation must always be more than simple spare-part surgery, where success depends on technical proficiency and supportive medical care. Instead, it is rich in implications for the embodied self.

To date, demonstrations of the value of a phenomenological approach to clinical matters pertaining to organ donation and receipt have been limited.15 16 It is our intention to investigate whether this approach can facilitate understanding of why some recipients with good clinical indicators of recovery begin to exhibit, in the early years after transplant, significant distress or anxiety that interferes with their continuing well-being.17 For example, over 20% of heart recipients ostensibly experience clinical depression.17 Major surgery, and the life-threatening illness that often precedes it, is of course often associated with depression, and depressed patients in turn are known to comply poorly with diet, exercise and drug regimens, with predictable effects on their levels of morbidity and on their ability to sustain recovery.18 Yet rather than indicating pure mental states in need of psychiatric intervention, might recipient distress be in part explained through the notion of a disturbance to the embodied self? A phenomenological analysis would suggest that such a profound bodily modification as transplantation will, inevitably, change the sense of self—just as an amputation might—and that recipients may perceive themselves to have incorporated a body part constituent of the donor’s identity. In other words, the transplanted heart is not just an exchangeable part, but is also an element of the self that carries with it the trace of the donor as a once living, experiencing person. Whatever their inner anxieties, recipients can rarely fully acknowledge such a mode of conceptualising the transplantation process, either to themselves or to healthcare providers. Instead, they are encouraged to adopt the biomedical model and view their post-transplant selves in terms of their laboratory results.19

All patients who are waiting for a heart transplant at our centre receive a manual offering explanation and advice.20 The first section, largely covering preoperative and postoperative biomedical issues up to discharge, makes clear that potential recipients’ suitability for the procedure will be determined through a psychiatric assessment. There is no indication, however, that recipients may experience anxieties about the psychic significance—that is, implications that go beyond scientific knowledge—of receiving the heart of a stranger, or that they may have questions and concerns about what the process of transferring a living organ means in terms of their own embodied identities. Aside from the assertion that organ donation is an altruistic act (pp7, 33),20 the donor is scarcely mentioned: effectively the heart has already been disembodied and stripped of identity. Similarly, although a psychosocial team is available for support, its role is characterised as one of stress management. The possibility of feelings of disunity in, or disruption to, one’s sense of embodiment is never raised, prompting the question of whether consent can be said to be fully informed.21

The second section of the manual—covering post-transplant medication and cardiac rehabilitation—is equally silent about the psychic significance of the process. Recipients are encouraged to write an anonymised letter of gratitude to the donor family, saying how they feel, but there is no acknowledgment that writing such a letter might precipitate or reveal a disrupted sense of self-identity (p171).20 In a small pilot, conducted before the main study, all interviewees (n = 5) found it difficult to talk about the letter, perhaps because it is the only clear occasion on which reflection about the provenance of their new hearts is legitimated. Transplant teams are not insensitive to patients’ distress, but the unfolding process seems to preclude open expression of disquiet or anxiety unrelated to medical, material or social issues.

How, then, do recipients negotiate the prolonged course of their transplant experience? Despite contemporary understanding of the body as a complex and integrated communications system, the fact that the traditional pump metaphor remains strong in lay and biomedical discourses about the heart reinforces the image of the body as a machine. More importantly, it gives credence to the belief that a failing organ can be replaced without significant disturbance to corporeal unity. Many recipients hold that view and believe themselves unchanged by the transplant experience. They appear to respond well to postoperative maintenance strategies and accept that renewed functionality constitutes the only parameter of concern.22 However, for others the more psychic aspects of incorporating a donor organ may break through, supported by multiple sociocultural beliefs that ascribe aspects of identity, personality, feelings and moral goodness to the heart.22 In the Western tradition, the heart is metaphorically central to what it is to be a human being,23 and—despite the ubiquity of the machine model of the body—sociocultural representations of transplantations regularly draw on narratives of identity change or unfamiliar patterns of behaviour.5 10 24 It is scarcely surprising, then, that recipients are unsettled by extra-clinical elements that are alien to their understanding and expectations of themselves. Many recipients attest to a strong sense of intercorporeality and may feel driven to nurture feelings of kinship with the deceased donor, or his or her family, in gratitude for what is seen as a sacrifice of the other’s life to maintain their own.11 Contemporary explorations of the disturbing aspects of heart transplantation are both autobiographical5 and academic,10 24 but the significance of such accounts lies not in their truth value, but in recipients’ felt experience. Certainly, immunosuppressant drugs such as prednisone are known to have personality-changing side effects, but reported ontological disruptions—the question of self-identity—appear in excess of bioscientific explanation.

Whatever the specific recipient experience, the accounts of many respond to the major unifying sociocultural theme of heart transplantation: that it is expressive of a gift relationship.25 26 The whole process—at both lay and clinical levels—is pervaded by such rhetoric, and the phrase “the gift of life” is routinely used as the dominant metaphor in Anglo-American transplant clinics and related contexts.i Although the conventional commitment to a mechanistic model of the body tacitly discourages patients from exploring difficult questions regarding bodily integrity and self-identity, paradoxically the gift rhetoric requires them to do just that. What this strong message stresses is a fundamental connection to a donor who has given some part of his or her living body to sustain the life of another. As the manual at our centre notes, “our work is only possible through the generous act of organ donation and our efforts must honour these remarkable gifts from organ donors and their families”(p7).20 In deceased donor procedures, otherwise known as cadaveric organ donation, transplantation always risks the connotation of cannibalisation,22 27 but the emphasis on the gift—the sense that the recipient is the beneficiary of an intended good deed—relieves that tension. At the same time, it signals a phenomenological connection between individuals and potentially raises the worrying question of how the sense of embodiment might be disrupted when organs are interchanged.

Regardless of intentions, the gift-of-life discourse highlights many paradoxes: for example, the deceased donor is treated at once as a disposable source of transferable spare parts and, at least by proxy, as a generous subject. Similarly, while recipients are expected to finally claim ownership of the transplanted heart, they are also implicitly reminded of its provenance,28 notably in the encouragement to write anonymously to the donor family, or in invitations to both sides to attend joint services of thanksgiving. Similarly, the walls of ambulatory transplant clinics are often adorned with visual displays of past donors, together with short tributes that personalise them as selfless and generous individuals. In short, it is difficult for recipients to forget that transplant organs are not simply circulating spare parts, and that, by incorporating what have been vital elements of others, they are effectively indebted. In a classic gift relationship, the receiver is expected to provide some payback or return,29 and while deceased donation blocks immediate or direct discharge, the not uncommon claims to kinship between recipients and donor families make clear that the gift may impose some form of obligation.30 The exchange model relies, moreover, on the assumption that self and other operate as separate entities, leaving transplant recipients with the sense of a demanding otherness within their own bodies.

It would be no surprise, then, if after transplantation recipients felt unable to voice or cope with the feelings of disruption that they experience. It is our contention that a phenomenological model of corporeal giving and receiving would facilitate acknowledgment of recipients’ feelings of otherness within—the donor organ can be fully assimilated neither biomedically nor psychically—while enabling celebration of transplantation as a non-personal life force.31 The study we are currently engaged in involves focused, open-ended interviews with 30 heart transplant recipients and is designed to test the resilience of this model by trying to understand how recipients perceive, understand and represent the experience of living with the heart of another. Our question is whether the phenomenological approach enables respondents to offer an account that goes beyond that of the traditional gift relationship, and of the unchanged self.

CONCLUSIONS

Merleau-Ponty and other phenomenologists argue that changes in bodily morphology inevitably signal changes in self-identity. Despite overt adherence to an objectified machine model of the body, recipients and transplant teams alike also invest in the gift-of-life rhetoric, invoking both altruism and a sense that the extra-organic aspects of life are transferred.28 While the biomedical focus may be on preventing the rejection of the transplanted organ, perceived by the recipient body as non-self material, the alien nature of the new organ is not simply a matter of an in situ disparity between donor and recipient DNA. Many recipients appear to both experience and seek to realise bonds with the donors, or their kin, whom they now feel to be concorporate with themselves. The normative divisions between self and other are thus elided in such a highly personalised way that we believe a fundamental rethinking of what it means to undergo organ transplantation is merited. Moreover, the biomedical goal of reducing mortality and morbidity rates, and restoring and sustaining health and well-being, will be achieved only if the recipient’s sense of self is also attended to. This means that instead of encouraging compliance with the notion of unchanged identity, the transplantation process would support recipients in expressing any ontological anxieties. We believe that an open acknowledgment that a sense of disrupted embodiment may follow transplantation is in itself a necessary element of coming to terms with bodily hybridity. A phenomenological enquiry into the lived experience of heart transplantation will test our claims and, we hope, facilitate more effective ways forward.

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