Organ Transplantation and Magical Thinking

Abstract

Organ transplantation can provide important treatment benefits in a variety of situations. While a number of live donor procedures are now possible, procurement of organs from dead donors remains the mainstay of transplant programmes. However, cadaveric donation rates remain much lower than anticipated, and some patients who receive organs struggle to adapt to their new body. The reasons for this are not entirely explained by rational or logical means. This paper uses concepts drawn from magical thinking to try to explain some of the less apparent issues at play within the process of cadaveric organ transplantation, including both the donation and receiving of organs. Three themes are explored as potentially relevant: superstitions and rituals around death and the dead body, incorporation and the meanings attached to the transplanted organ, and survivor guilt. All three are shown to be relevant for some part of the transplantation process in at least a minority of cases. It is therefore suggested that focusing not only on the logical and scientific, but also on the ambiguous and magical may enhance the organ donation process and thus increase donation rates and the psychological adjustment of transplant recipients.

The transplantation of cadaveric human organs, once the epitome of miraculous modern medicine, has become almost common-place [1]. Heart, lung, kidney, pancreas, even bowel, hand and face transplantation have been performed in centres around the world. It has been claimed that one ‘average’ dead organ donor provides 30.8 additional life-years distributed over an average of 2.9 different recipients, and that if we could procure organs from 100% of potential dead donors, we could save 250,000 additional life-years [2].

It might be expected then that increasing numbers of people would wish to donate their organs were they to die suddenly, and that an increasing number of families would support this decision if confronted with the choice. After all, if organs are merely spare parts no longer needed by one body but potentially life-saving to another, organ donation is the right and sensible thing to do. But while the demand for donor organs steadily increases, donor rates do not. In the USA it has been estimated that less than half of potential dead donors are actually made available [3,4].

Considerable effort has been expended to try to increase the rate of donation and the need for further education has been stressed [5,6,7], optimizing communication with families confronting the possibility of organ donation from a dying family member [8], ensuring full understanding of the process of transplantation by health care professionals [9], and consideration of monetary recompense for organ donation [10] or even re-assigning ownership of the dead body to the state rather than to the individual's family [11].

These strategies usefully draw on the rational and scientific aspects of the decision-making process. However, they ignore more complex underlying social and cultural constructs relating to the importance of the body as an essential element of the self in life, and a precious and meaningful remnant of the person after death. In terms of those receiving organs from cadaveric donors, health benefits and improvements in quality of life are often considerable. However, for a minority of patients, the addition of an alien body part creates unexpected difficulties.

It is therefore appropriate to direct some attention towards what one author calls ‘the dark side’ of the transplantation process [12].

This paper uses the concept of magical thinking to re-examine organ procurement from dead donors and transplantation into living patients in the belief that attention to these issues may increase donation rates and improve clinical outcomes for donor families and recipients.

Magical thinking

Magical thinking is a complex and multifaceted manner of making sense of the world. To summarize briefly, it comprises idiosyncratic ideas, contradicting normally accepted laws of science or nature [13]. It is based on beliefs that one's thoughts, actions, or words can control events without using usual means, or that entities can influence one another solely by their similarity or close location in time or place. Magical thoughts can provide some protection from the discomfort, uncertainty, and fear that may be induced by random events which are otherwise from unknown cause and difficult to manage. Freud used the term ‘primary process’ for this form of thinking [14] and stressed the ongoing importance of sources such as myths and fairy tales. And while it is commonly assumed that the ‘average’ modern western individual uses logic and scientifically based causal reasoning, the evidence appears to show that belief in magical phenomena remains widespread [15,16]. Rather than adopting one or the other, people draw from both the scientific and the magical depending on the circumstances, with magical explanations being more common in times of danger or fear [17,18,19].

The state of illness readily fits into the paradigm of stress, loss of control, and fear. Diseases are often random and mysterious. They challenge life and liveliness, and they are sometimes untreatable. And modern medical treatments are complex, highly technical and sometimes appear to defy commonsense. The stage is set for magical thinking, and it has been reported as a means of coping in a number of illnesses including cancer, AIDS, and multiple sclerosis, [20–23] and in the response to death itself [24].

The removal of an organ from one body and its repositioning into another challenges ideas of what constitutes the bodily self, and of the demarcation line between life and death. While ‘rational’ thinking emphasizes that the organ is no longer of any value to its owner, and is of considerable potential benefit to the recipient, magical thinking suggests that things are not so simple.

Three magical themes are relevant:

• rituals and superstitions around death and the handling of the dead body

• incorporation and attribution of meaning to the new organ

• survivor guilt

These are dealt with in sequence.

Is brain dead really ‘dead dead’

Traditions relating to protection and care of the physical dead body have strong roots historically [25] and as part of many cultures currently [26–31]. Almost universally, mutilation of a body is taken very seriously, and taps into fears and superstitions about the power of the dead [32], and into beliefs that a person's identity remains with the body for some time after physical death has occurred [33]. Can a body be both an object of reverence, respect and power, and also a mere repository of spare parts?

To add to these complexities, the notion of ‘brain death’ which is used in determining the possibility of taking donor organs conflicts with more traditional definitions of death [34]. A body declared brain dead is still artificially maintained and therefore apparently still breathing and maintaining a life-like colour; it does not look dead [35]. To work in the process of organ procurement, health personnel must understand and accept that a patient with brain death is no longer a living human being and thus cannot be injured in any way [9]. However, the fact that the potential organ donor arrives to theatre looking no different from any other patient can be stressful for those involved in the surgery [36], and sometimes anaesthetists actually use muscle relaxants to avoid spinal reflexes causing jerking movements during surgery – these are distressing for operating room staff because they perpetuate the appearance of life. The ambiguity sometimes extends even to documentation; there have been cases where families are given death certificates citing time of death as the time when artificial ventilation was ceased rather than the moment when brain death was declared, thus implying that the person was in fact still alive at the time of organ procurement [37]. Can someone die more than once?

Incorporation: the meaning within the organ

The scientific view of cadaveric organs prepared for donation is that they are really just spare parts which, with good surgical technique and then good immunosuppressive medication regimes can be induced to perform their function within the bodies of their new recipients.

However, for many people the situation is more complicated. The body image, the image of the physical self in its appearance, function, and stability, is a complex psychological construct with origins in earliest infancy [38]. It is not surprising then that the loss of an organ, and its replacement with a new organ derived from the body of another might have emotional implications. The majority of transplant recipients negotiate the change successfully. However, for some it is less easily managed.

A large, systematic series of 722 patients who had had transplantation of heart, lung, liver or kidney revealed that only 62% regarded the organ as ‘my own organ being part of my body’, a further 37% stated that the transplant was ‘a foreign organ that is part of my body’ and for 1%, the allograft was ‘a foreign organ that is not part of my body’. Donor characteristics were seen as relevant by many recipients: 21% said that it would cause emotional stress if the donor were homosexual, 21% would be concerned if the donor were criminal, and 24% would be distressed by a history of suicide [39].

Bunzel et al. [40] interviewed a sample of 47 patients after cardiac transplantation. While many made jokes about changes in personality, for a small minority, 6%, there was a strong sense that the new organ had induced significant and distressing personality change. The authors commented that denial and humour might be protective defences against otherwise distressing feelings. In contrast, those who felt that their personality had been changed expressed discomfort and a sense of uncertainty.

Sanner [41] and Goetzmann [42] reported similar findings. In her sample of 69 members of the public, Sanner identified 30% as negative towards the idea of organ donation. This group referred to concerns about influence and contamination by the transplanted organ. Goetzmann, in a detailed case report of a 48-year-old man who had received a lung transplant, described the ever-present nature of the donor in the patient's life, mostly as a benevolent and helpful force, but with the potential to become destructive or persecuting.

In other words, a significant, if small, minority of patients who receive transplants will be unable to fully integrate the new body part and are thus vulnerable to psychological distress. Recently, the advent of possible transplantation of visible body parts such as hand and face raises even more serious questions concerning the constant, visible reminder of the presence of another person [43].

Survivor guilt

The term ‘survivor guilt’ was coined in 1964 by Niederland to capture the depressive suffering of some concentration camp survivors [44]. The salient feature of this guilt is the feeling that one has got more than one's fair share, and that by a system of magical economics, the getting has been at the expense of someone else. Thus, one becomes guilty of the other's loss, guilty for the sense of relief at being the one who survives not the one who dies, and vulnerable to the revenge of the envious dead who may demand death as punishment.

Inevitably, waiting for a suitable organ to become available is to some degree the same as wishing for somebody to die [45]. As Inge Clendinnen puts it in her memoir of receiving a liver transplant ‘People on the waiting list are always, secretly, guiltily tense on public holidays. Road accidents happen on public holidays’ [46]. At the level of magical thinking, this is tantamount to causing the donor's death.

In a series of recently transplanted patients, guilt was also sometimes expressed regarding the mutilation of the donor's body, and some acknowledged fear that the donor family would accuse them of having survived at the donor's expense [47].

Another source of survivor guilt derives from the identification and empathy between patients enduring the same predicament. Thus, a patient developed psychosomatic abdominal pain as symbolic suffering for his successful recovery from renal transplantation when he learned that his fellow patient, who had received the other kidney from the same cadaveric source had died [48]; recipients of bone marrow transplants were found to have complex reactions to learning of other patient deaths including guilt and depression [49].

The impact that guilt may have on adherence to treatment has been looked at in two separate studies, with contradictory results. Achille et al. [50] surveyed 50 recipients of kidney transplant, and found that while general emotional stress decreased compliance, guilt increased it, as if the sense of indebtedness enhanced a sense of duty. However, Baines [51] found that guilt predicted poor compliance.

Discussion

Transplantation is a powerful treatment which can provide considerable benefit to patients with organ failure. Cadaveric organ donation is characteristically referred to as ‘the gift of life’. However, the actual process of organ donation occurs in the context of a drawn-out and ambiguous process of death. As Holtkamp caustically puts it, the gift of life is ‘wrapped in mourning’ [52].

When considering how to promote donations from dead patients, excessively rationalistic policies which neglect deeply held beliefs, symbols, and feelings may not be the optimal approach [53]. Relatives who worry that the process may be mutilating to their loved one's body, or who are not truly convinced that death has indeed occurred are not likely to give consent for organ donation; prospective transplant recipients anxious about the impact of a stranger's organ on their personality, or distressed by the belief that they are in some way to blame for the death of another may suffer silently and perhaps unnecessarily.

The implications for health care are numerous.

Firstly, the importance of the body in death needs to be recognized at every step in the transplantation process. A recent study by Chapple and Ziebland [54] provides important empirical data related to viewing, protecting, preparing, and honouring the dead body of a relative. It underlines that these needs are individual and idiosyncratic. It is thus critical that when family members are asked to consider organ donation, attention be given to what kind of special care they might want in terms of the physical treatment of the body, and any relevant ritual such as prayer. Reassurance that the body will be treated with gentleness and respect needs to be clearly given.

Secondly, for the recipient of a cadaveric organ, the treating team needs to be alert to the presence of emotional distress relating to a sense of bodily invasion. It may be helpful to prepare patients for the possibility of such feelings, and to create room for their expression, since patients may fear that they will be thought ridiculous or ungrateful if they talk about such misgivings. Feelings of guilt towards the dead donor may be lessened by symbolic ways of thanking or honouring the donor [55], or by organized ceremonies [37]. The possibility that emotional distress may be a cause for non-compliance with post-transplant treatment raises the question of whether treating such symptoms will reinforce adherence. This was found to be the case by Baines's group [51] who used a brief psychotherapy intervention and successfully helped patients to manage their negative feelings. More systematic research is needed in this area.

This review draws attention to the importance of the ambiguous and ambivalent processes which can complicate cadaveric organ transplantation, and suggests that being alert to their existence and attempting to address them may produce an increase in donor rates, and a better outcome for organ recipients.