Quality
ofLife
Research,
1, pp. 251-256
Does changing the heart mean changing personality? A retrospective inquiry on 47 heart transplant patients B. Bunzel,* B. Schmidl-Mohl, A. Grundbiick and G. Wollenek Second Department of Surgery, University Hospital Vienna, Spitalgasse 23, A-1090 Vienna (B. Bunzel, A. Grundbdck and G. Wollenek); University Hospital of Psychiatry, Vienna, Austria (B. Schmidl-Mohl).
Heart transplantation is not simply a question of replacing an organ that no longer functions. The heart is often seen as source of love, emotions, and focus of personality traits. To gain insight into the problem of whether transplant patients themselves feel a change in personality after having received a donor heart, 47 patients who were transplanted over a period of 2 years in Vienna, Austria, were asked for an interview. Three groups of patients could be identifled: 79% stated that their personality had not changed at ail postoperatively. In this group, patients showed massive defense and denial reactions, mainly by rapidly changing the subject or making the question ridiculous. Fifteen per cent stated that their personality had indeed changed, but not because of the donor organ, but due to the life-threatening event. Six per cent (three patients) reported a distinct change of personality due to their new hearts. These incorporation fantasies forced them to change feeiings and reactions and accept those of the donor. Verbatim statements of these heart transplant reciplents show that there seem to bs severe problems regarding graft incorporation, which are based on the age-old idea of the heart as a centre that houses feelings and forms the personality. Key words: Body image, changes of personality, hear-l transplantation, incorporation.
Introduction For patients with terminal heart disease heart transplantation has become the chosen method of therapy. The overall aim has been and remains to assess the long-term therapeutic value for patients, for whom neither standard forms of medication nor the usual surgical treatments are of any benefit. During the last decades it has become evident that heart transplantation offers not only increased quantity but also improved quality of
l
To whom correspondence should be addressed. 0 1992 Rapid Communications
of Oxford
Ltd
life.lv4 Improved suppression of graft rejection resulting from the discovery of cyclosporine in 1969,5 together with improvement in early diagnosis, rejection management and improved patient selection criteria triggered a sharp increase in heart transplantation worldwide. According to the International Society for Heart Transplantation, 6 more than 16000 heart transplantations were performed all over the world. The first othotopic heart transplantation in Vienna, Austria, took place in March 1984 in the Second Department of Surgery of the University Hospital. Up to March 1992, 282 heart transplantations were performed there in 271 patients, 237 men and 34 women, ranging from 6 months to 67 years of age. Ten patients needed retransplantation, one a re-retransplantation. Eleven patients underwent transplantation after previous bridging with a left ventricular assist device (four patients) or with total artificial heart (seven patients). In most cases, end-stage cardiac failure from either ischaemic or idiopathic cardiomyopathy was the indication for the procedure. In the early years, immunosuppression was carried out with a double drug, low dose cyclosporine and azathioprine containing protocol. As of May 1986, all patients received standard low-dose triple drug immunosuppression with cyclosporine, azathioprine, and prednisone, supplemented prophylactically with either antithymocyte globulin or monoclonal murine antibody in the perioperative period. Though coming from all parts of Austria, all patients are examined in the outpatient clinic of our hospital on a monthly basis. 7 For the individual patient, heart transplantation psychologically means more than an operation. Being confronted with the diagnosis of an endstage, life-threatening heart disease with transplantation as the only therapy, patients have to Quality
of Life Research . Vol 1 .I992
251
B. Bunzel et al.
sustain a massive narcissistic insult because the heart as a vital organ is the key part of the symbolic self.’ “Cardiac transplantation is a process, not an event”, Shapiro wrote, 9 “a process that continues for the remainder of the recipient’s life . . . Cardiac transplantation means a new set of problems in place of the old ones.” Preoperatively patients have to face the reality that their failed organ will be replaced by a vital one provided by an anonymous donor who was target of disease or accident or even suicide. They are waiting for the death of that unknown person- still alive-with great impatience: a fact that causes feelings of guilt and shame. Furthermore, the heart is often seen as the focus of love, source of personality and emotions, and its loss sometimes makes the patients and their relatives afraid of losing personality and of having to accept the characteristics of the donor: both Meserve’ and Norvell et a2.*’ found that the mythological qualities ascribed to the heart complicate recipients’ acceptance of the loss. Castelnuovo-Tedesco” and Kraft13 stated that after cardiac transplantation the continuity, stability and nature of the self is threatened. In the worst cases, psychosis and major psychiatric symptoms may occur. Rauch’ stated that emotional turmoil and perceived threats to the integrity of the self interfere with psychological integration of the new heart: “Transplant professionals generally agree that psychological rejection of the heart is sometimes associated with physiological rejection”. Frierson14 reported that patients often fear that they will assume some characteristics of the deceased donor and feel a “sense of rebirth.” He reported that one man worried about developing suicidal characteristics after learning that his heart had come from a person who had committed suicide. The author stressed two facts: (1) that some individuals seem to regard their heart as if it had a mind of its own by saying “the heart” and not “nzy heart” (like saying “my nose”). One patient even was quoted as saying: “the heart is rejecting me”, (2) that incorporation problems are not limited to donor organ recipients, but they extend to families and even caregivers. Patients also worry that they have to take on the sexual behaviour of the anonymous donor. Tabler and Frierson I5 described pa tr‘en ts wondering whether the donor “was promiscuous, oversexed, homo- or bisexual, excessively masculine or feminine, or afflicted with some sort of sexual dysfunction“. Many persons in their study reported changes in their sexual functioning after transplantation and adamantly believed that “the heart has 252
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of Life Research . Vol 1 .2992
made all the difference”. This irrational, but common belief of incorporation may even alter sexual concerns on the part of patients and their spouses. The association of the heart with emotions may also help understand the intense public interest that heart transplant programmes have generated even in the mass media: We can read journalist’s questions like “Do you as a Moslem have problems with the heart of a Roman Catholic?‘, I6 and “Had he received with her heart also her feelings? Would he from now on see the world with the eyes of a 17-year-old school-girl?“17 or headlines such as “Israeli soldier heart given to a Palestinian”. l8 As these headlines and the scientific work illustrate, having a donor heart may disrupt or at last disturb body image as well as the former personality, and postoperatively patients must therefore redefine and redesign the sense of the self. Since 1984 at our transplant centre we have been confronted with patients thinking about the significance of the new heart for their future life. We had one patient who preoperatively stated that he would “accept a heart only from a person as good-natured as himself”. Another patient refused to accept the heart of a woman, and yet another developed psychiatric disorder suspecting that a hen’s heart had been given to him. In view of these experiences and the scientific references we conducted a study to obtain information about the feelings and attitudes transplant patients have towards their donor hearts, and if or how they feel changed in personality after surgery.
Met hods A consecutive sample of 47 patients (45 men, two women) who were transplanted over a 2 year period in Vienna, Austria, were interviewed about 3 months after surgery. In twelve patients the indication for heart transplantation had been coronary heart disease, in 23 cardiomyopathy and in two mitral valve disease. They were between 17 and 66 years old (mean age: 47 years). All but four were married. A clinical psychologist asked them about their feelings about and reactions to the graft in a semi-structured interview. Regarding change of personality, our main interest focused on the following question: “The heart is often seen as source of feelings, emotions, and centre of personality. If it is like that, changing the heart must result in changed personality. Surely, it is a matter
Personality changes after transplant of opinion. Please, let us know your opinion, your experience up to now: Do you feel the same way about yourself after heart transplantation, or do you feel changed?’ The patients were familiar with the interviewer because she had known them since their admission to the waiting list, and open, honest answers could be expected. The interviews took place in the hospital on the occasion of the last routine check-up before discharge home and were tape recorded (with permission of the patients), then transcribed and finally evaluated with regard to the question stated above.
Results During the evaluation of the material it became evident that our patients can be divided into three groups: 1. Persons who stared that their personality has nor changed at all (n = 37 or 79%) Statements of these patients were much interesting then originally expected.
saying “my heart comes from a Turk. So perhaps I will spend my next holidays at home in Turkey . . .” When the interviewer showed interest and started to take their statements seriously, all six of them broke in saying that it was nothing but a joke, nothing to be taken seriously anyway. -two patients who stated that they did not feel changed at all, made a revealing additional remark which made us think that they did wonder about changes in personality: “No, not at all, I’m the same as before. Also my folks tell me that I’m exactly the same as before” “No, of course not, I have not changed, what nonsense! I’ve also asked my wife whether I’m changed in any way, and she said no, I’m the same as before” 2. Persons who stared that their personality had indeed changed, but nor at all because of the new organ (n=7or 15%)
more
-29 patients abruptly stated that they did not feel changed in any way, that it was “nonsense to think about that”, and abruptly switched to another topic or ridiculed the question (“this pile of flesh?‘). -six patients affirmed that no change whatsoever had occurred, but immediately made a ‘joke’ which apparently was not at all meant as a joke: It was evident that three of them-menhad problems with their female donor hearts. They wanted to discuss the problem and at the same time were afraid of talking about it, and this ambivalence lead to ‘jokes’ such as: “Well, if that’s the case, I’d have go out chasing men from now on, wouldn’t I?” “You aren’t saying I’m gay now, are you?’ “I have the heart of a women now, but still enjoy watching other women. I haven’t turned lesbian, have I?” Two of these six patients assumed that their heart must have come from a night person or a nightwatchman, because when they still had their old hearts they used to go to sleep very early, but since transplantation they were not at all sleepy until midnight. One patient laughed
These patients said that opinions, preferences, their way of looking at life and their way of life in general had changed postoperatively. They put it, for example, as follows: “Yes, I have changed, but this, I’m sure, has nothing to do with the heart. I’ve simply ordered my priorities differently, and have a new outlook on life. Many things that were of primary importance to me before, are secondary now and vice versa.” One patient summed it up as follows: “The soul is still the same, but the outlook on life has changed’. 3. Persons who experienced a distinct change in personality clearly due to their donor hearts (n = 3 or 6%) These patients follows:
described
their
way
of life as
P(atient): “Yes, I have changed. I want to avoid any kind of stress, if possible, and I have become much calmer.” PS(ychologist): “Do you think you have changed, or that something has changed you?’ Quality of Life Research . Vol 1 .1992
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B. Bunzel et al. I’: “The new heart has changed me. One say, well, not exactly, but one might like that: the person whose heart I got calm person, not hectic, and his feelings been passed on to me now.”
could put it was a have
P: “Yes, I think I have changed.” PS: “Because of the new heart?” I’: “Yes, maybe, I don’t know really.” PS: “What is it that in yourself seems a bit different now?” P: “I love to put on earphones and play loud music, something I never did before. A different car, a good stereo-those are my dreams now. And I have thoughts now that I never had before.” (remark: patient: 45 year old man, donor 17 year old boy) The third patient behaved as if the donor was still alive inside him. In his fantasy, the donor was growing older with him. So the patient felt as if he was living two lives. When asked how he was, he used to say “WE are o.k.“. In the interview he (37, divorced and remarried) pointed out: I, . . . actually my wife and I, we could get married in church now. Because I’m no longer the one she originally married. I’ll write to the Pope. . .” It must also be mentioned that not only patients, but also their spouses and their friends suspected a change of personality to go hand in hand with a new heart. Wives of patients often ask the psychologists before surgery whether they have to expect changes in feelings or behaviour on the part of their husbands after they have got “another person’s heart”. The significance of the heart regarding feelings and personality and its importance when replaced was best shown by one male patient who described the reactions of his family in the interview: “I have two sisters, I am the youngest in the family. My father is Tyrolean, and my two sisters were born in Tyrol. But I was born in Vienna. In the transplantation I got the heart of a Tyrolean. Since then my sisters have been saying, now you are finally one of us .”
Discussion Sir Peter Medawar” quoted: of organs will be assimilated 254
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“The transplantation into ordinary clinical . 1992
practice-and there is no need to be philosophical about it. This will come about for the single and sufficient reason that people are so constituted that they would rather be alive than dead.” This opinion seems to be the usual attitude of surgeons towards transplantation. One psychiatrist, Peter Shapiro, 9 contradicts this: “Although cardiac surgeons may emphasize the operative procedure, it is what precedes and follows surgery, that is, for patients and for others involved, the enduring Our results support Shapiro’s focus of attention.” statement that especially transplantation of a donor heart means intense stress for the patients. The heart occupies a special position in people’s minds, it is not seen as an organ like the others. Over the centuries it has become a symbol of life, power, soul, love and the reasons why Kuhn 2~~~~~~~~t~~~~i~~~~~ part of the body “uncomparable stress”. Rodgers21 speaks of a “psychological transplant” beneath the organic one, and Castelnuovo-Tedesco’2 emphasizes that a new organ is not at all “psychologically inert”. This stress, in conjunction with medication and organic brain symptoms, may result in psychiatric symptoms after surgery, which are reported by many authors: generally recognized postoperative problems of transplant patients include mood disturbance, 2P22,23affective illness24,25 and organic mental syndromes,20 which occur in up to 50% of transplant patients. A donor heart recipient has to deal with the loss of an organ, but he must also assimilate the new organ into the self. As Shapiro’ points out, two kinds of body image effects are observed in transplant patients: in addition to the actual physical changes caused by medical therapy (e.g., excessive weight gain due to steroid drugs, hirsutism and acne due to cyclosporine) there are the conscious, preconscious and unconscious fantasies of incorporating aspects of the donor’s personality together with the donor heart-a kind of stress that is often aggravated by acquaintances of transplant patients who want to know “if it feels strange to have someone else’s heart inside you”. In his opinion, most patients ultimately deny the emotional impact of having within themselves the organ of another person. Shapiro, as well as Kuhn2’ and Mai state that a variety of defenses are used to cope with this kind of stress, above all denial strategies such as depersonalization (“just a pump”) and repression (“I never think about it”). This corresponds with our findings: almost 80% of our transplant patients (group 1) made such remarks, which suggest complete or partial denial.
Personality changes after transplant The high prevalence of denial in our study also corresponds with the results of Mai: 18 of the 20 patients in his follow-up showed denial towards graft and donor 30 to 90 days after transplantation. He suggested that denial, defined as conscious or unconscious repudiation of part or all of the total available meaning of an event to allay fear, anxiety or other unpleasant effects26 is an important protective and adaptive function in heart transplant patients. Denial helps the patients to avoid feelings that may be unbearable for them at the time. The intensity of the threat as perceived by the individual is the key factor: the greater the threat perceived by the individual, the more likely he/she will resort to defense mechanisms-usually in form of denial: “The person will cope if he can, defend if he must, and fragment, if he is forced to do SO.“*~ As Kuhn*’ writes I “adjustment to the rigors of the heart transplant protocol requires a degree of personality strength, resilience and adequacy of coping skills, which some patients simply do not possess.” It must also be noted that apparently men had difficulties accepting a female donor heart and assimilating it into their male body image: men are afraid of becoming effeminate after receiving a female heart. Literature also discusses the problem of a man accepting a woman’s heart: Cardin** emphasised the fact that male persons express concerns that if they received the heart of a woman they would become more effeminate. Rauch’ reported the case of a 42 year old fireman who had received a heart from a woman and worried that his firehouse colleagues would no longer accept him. Interestingly, among our patients no woman complained about having got a male heart, although they experienced clear signs of masculinity such as extensive hair growth. They correctly blame medication and not the male donor organ for it. All this suggests that fantasies about the donor, the donor heart and its influence on the recipients’ personality must be common, although they seem to be so threatening to the self-concept that denial must unconsciously set in to cope with. The seven patients in group 2 reported changed values and priorities. This is a phenomenon that is often observed after a radical event in someone’s life. The patients are clearly aware of the change, which is perceived as change of personality. Things, people, or activities that were considered very important before seem to be completely irrelevant after the transplantation, while others, that were neglected before, are given a higher
priority postoperatively. Patients perceive of themselves as changed, at the same time they are also perceived as changed by the people surrounding them. Patients describe this change as a reaction to a life-threatening experience. Three patients (group 3) reported a distinct change of personality because of the new heart given by an unknown person. They said that they had different feelings and preferences as they were forced to accept those of the donor. They stated that the dead donor was alive inside their bodies, which influenced their emotions and their behaviour. At first sight these incorporation fantasies remind one of the so-called “multiple personality disorder” (MPD; Ref. 29), part of the dissociative disorders, which are very rare, and there is controversy if MPD actually exists. It contains the apparent existence of two or more distinct personalities within an individual with only one of them evident at one time, and the patients often show a sudden change from one personality to another. In MPD patients the new personality is supposed to have originated in stressful events such as rape or severe traumata in childhood. The feelings of heart transplant patients reported by group 3, however, differ clearly from MPD syndromes: they seem to be aware of their own personality and the suspected one of the donor at the same time; they fantasize about the incorporation of the donor and some of the donor’s personality traits. Summarizing our results, we may conclude that there seem to be problems the transplant patients have to cope with regarding incorporation of the graft. It has become evident that heart transplantation is not simply a question of replacing an organ that no longer functions. Even though we live in a high-tech age, we cannot get rid of the notion of the heart as the seat of all feelings, of love and personality, and this view influences the acceptance of the heart as just another part of the body. Rudiger 30 described this notion very well: “It is much harder to change or abandon an age-old idea deeply rooted in religion, art and poetry and stifled by conventions than to understand intellectually the anatomical and physiological conditions for the transplantation of organs. And even when we realise by which means the exchange of an organ is feasible, for a long time we will not believe that this is the very same heart that houses feelings and forms the personality. Such a double-tracked coexistence of believing and knowledge belongs to the distinctive characteristics of an epoch that has Quality
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B. Bunzel et al. not yet succeeded in bridging “intellect”. We are prisoners pictorial imagination.”
over “heart” and of our ancestor’s
15. 16. 17.
References 1. Gaudiani VA, Stinson EB, Alderman E, et al, Long-term survival and function after cardiac transplantation. Ann Surg 1982; 194(4): 381-385. 2. Lough ME, Lindsay AM, Shinn JA, Stotts NA. Life satisfaction following heart transplantation. J Heart Transplant 1985; 4(4): 446-449. 3. O’Brien BJ, Buxton MJ, Ferguson BA. Measuring the effectiveness of heart transplant programmes: Quality of life data and their relationship to survival analysis. J Chron Dis 1987; 1: 137-153. 4. Samuelsson RG, Hunt SA, Schroeder JS. Functional and social rehabilitation of heart transplant recipients under age thirty. Stand 1 Cardiovasc Surg 1984; 18: 97-103. ME. Cardiac 5. Griffith BP, Hardesby RL, Thompson transplantation with cyclosporine: The Pittsburgh experience. \ Heart Transplant 1983; 2: 251-155. 6. Kriett JN, Kaye Ml’. The Registry of the International society for the heart and lung transplantation: seventh official report-1991. J Heart 6 Lung Transplant 1991; 18(4): 491-498. 7. Laufer G, Miholic J, Laczkovics A, et al. Independent risk factors predicting acute graft rejection in cardiac transplant recipients treated by triple drug immunosuppression. J Thorac Cardiovasc Surg 1989; 98: 1113-1121. 8. Rauch JB, Kneen KK. Accepting the gift of life: heart transplant recipients’ post-operative adaptive tasks. Sot Work Health Care 1989; 14(l): 47-59. 9. Shapiro PA. Life after heart transplantation. Progr Cardiovasc Dis 1990; 32(6): 405-418. 10. Meserve HC. The matter of the heart. 1 Relig Health 1984; 23: 263-267. 11. Norvell N, Conti CR, Hacker H. Heart transplantation candidates: Psychological evaluation. Prim Cardiol 1987; 13: 20-26. P. Ego vicissitudes in re12. Castelnuovo-Tedesco sponse to replacement of body parts. Psychoanal Quarterly 1978; 47: 381-397. of cardiac trans13. Kraft IA. Psychiatric complications plantation. Semin Psychiatry 1971; 3: 89-97. 14. Frierson RL, Lippmann SB. Heart transplant pati-
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18. 19.
20. 21. 22. 23. 24.
25. 26. 27. 28. 29. 30.
ents rejected on psychiatric indications. Psychosomatics 1987; 28(7): 347-355. Tabler JB, Frierson RL. Sexual concerns after heart transplantation. J Heart 6 Lung Transplant 1990; 9(4): 7-493. Das Neue Blatt. 1986,51: 10. Quick. Transplantation: Fur immer herzlich verbunden. Heft 22, May 1988: 100-101. Wiener Kurier. 18. Nov. 1989: 4. Medawar Sir Peter; at the Second International Congress of the Transplantation Society, 1968, New York City. Reference: Firth BG. Southwestern International Medicine Conference: Replacement of the failing heart. Am 1 Med Sci 1987; 1: 50-65. Kuhn WF, Myers B, Brennan AF, et al. Psychopathology in heart transplant candidates. J Heart Transplant 1988; 7: 223-226. Rodgers J. Life in the cutting edge. Psychology Today 1984: Oct.: 58-6. McAleer MJ, Copeland J, Fuller J, Copeland JG. Psychological aspects of heart transplantation. J Heart Transplant 1985; 4(21: 232-233. Mai FM. Graft and donor denial in heart transplant recipients. Am J Psychiatry 1986; 143: 1159-1161. Freeman AM, Sokol MA, Folks DG, McVay RF, McGriffin AF, Fahs JJ. Psychiatric characteristics of patients undergoing cardiac transplantation. Psychiatr Med 1988; 6(2): 8-22. Shapiro PA, Kornfeld DS. Psychiatric outcome of heart transplantation. Gen Hosp Psychiatr 1989; 11: 352-357. Hackett T, Cassem N. Development of a quantitative rating scale to assess denial. J Psychosom Res 1974; 18: 93-100. Haan N. Coping and Defending-Processes of selfenvironment organization. New York: Academic Press, 1977. Cardin S, Clark S. A nursing diagnosis approach to the patient awaiting cardiac transplantation. Heart Lung 1985; 14(5): 499-504. Fahy TA. The diagnosis of Multiple Personality Disorder. A Clinical Review. Br J Psychiatry 1988; 153: 597-606. Rudiger H. Die Metapher vom Herzen in der Literatur. In: Thomae K, ed. Das Herz im Umkreis des Denkens. Biberach ar. der Riss 1985: 87-154.
(Received 26 April 1992; accepted in revised form 22 June 2992)
ofLife
Research,
1, pp. 251-256
Does changing the heart mean changing personality? A retrospective inquiry on 47 heart transplant patients B. Bunzel,* B. Schmidl-Mohl, A. Grundbiick and G. Wollenek Second Department of Surgery, University Hospital Vienna, Spitalgasse 23, A-1090 Vienna (B. Bunzel, A. Grundbdck and G. Wollenek); University Hospital of Psychiatry, Vienna, Austria (B. Schmidl-Mohl).
Heart transplantation is not simply a question of replacing an organ that no longer functions. The heart is often seen as source of love, emotions, and focus of personality traits. To gain insight into the problem of whether transplant patients themselves feel a change in personality after having received a donor heart, 47 patients who were transplanted over a period of 2 years in Vienna, Austria, were asked for an interview. Three groups of patients could be identifled: 79% stated that their personality had not changed at ail postoperatively. In this group, patients showed massive defense and denial reactions, mainly by rapidly changing the subject or making the question ridiculous. Fifteen per cent stated that their personality had indeed changed, but not because of the donor organ, but due to the life-threatening event. Six per cent (three patients) reported a distinct change of personality due to their new hearts. These incorporation fantasies forced them to change feeiings and reactions and accept those of the donor. Verbatim statements of these heart transplant reciplents show that there seem to bs severe problems regarding graft incorporation, which are based on the age-old idea of the heart as a centre that houses feelings and forms the personality. Key words: Body image, changes of personality, hear-l transplantation, incorporation.
Introduction For patients with terminal heart disease heart transplantation has become the chosen method of therapy. The overall aim has been and remains to assess the long-term therapeutic value for patients, for whom neither standard forms of medication nor the usual surgical treatments are of any benefit. During the last decades it has become evident that heart transplantation offers not only increased quantity but also improved quality of
l
To whom correspondence should be addressed. 0 1992 Rapid Communications
of Oxford
Ltd
life.lv4 Improved suppression of graft rejection resulting from the discovery of cyclosporine in 1969,5 together with improvement in early diagnosis, rejection management and improved patient selection criteria triggered a sharp increase in heart transplantation worldwide. According to the International Society for Heart Transplantation, 6 more than 16000 heart transplantations were performed all over the world. The first othotopic heart transplantation in Vienna, Austria, took place in March 1984 in the Second Department of Surgery of the University Hospital. Up to March 1992, 282 heart transplantations were performed there in 271 patients, 237 men and 34 women, ranging from 6 months to 67 years of age. Ten patients needed retransplantation, one a re-retransplantation. Eleven patients underwent transplantation after previous bridging with a left ventricular assist device (four patients) or with total artificial heart (seven patients). In most cases, end-stage cardiac failure from either ischaemic or idiopathic cardiomyopathy was the indication for the procedure. In the early years, immunosuppression was carried out with a double drug, low dose cyclosporine and azathioprine containing protocol. As of May 1986, all patients received standard low-dose triple drug immunosuppression with cyclosporine, azathioprine, and prednisone, supplemented prophylactically with either antithymocyte globulin or monoclonal murine antibody in the perioperative period. Though coming from all parts of Austria, all patients are examined in the outpatient clinic of our hospital on a monthly basis. 7 For the individual patient, heart transplantation psychologically means more than an operation. Being confronted with the diagnosis of an endstage, life-threatening heart disease with transplantation as the only therapy, patients have to Quality
of Life Research . Vol 1 .I992
251
B. Bunzel et al.
sustain a massive narcissistic insult because the heart as a vital organ is the key part of the symbolic self.’ “Cardiac transplantation is a process, not an event”, Shapiro wrote, 9 “a process that continues for the remainder of the recipient’s life . . . Cardiac transplantation means a new set of problems in place of the old ones.” Preoperatively patients have to face the reality that their failed organ will be replaced by a vital one provided by an anonymous donor who was target of disease or accident or even suicide. They are waiting for the death of that unknown person- still alive-with great impatience: a fact that causes feelings of guilt and shame. Furthermore, the heart is often seen as the focus of love, source of personality and emotions, and its loss sometimes makes the patients and their relatives afraid of losing personality and of having to accept the characteristics of the donor: both Meserve’ and Norvell et a2.*’ found that the mythological qualities ascribed to the heart complicate recipients’ acceptance of the loss. Castelnuovo-Tedesco” and Kraft13 stated that after cardiac transplantation the continuity, stability and nature of the self is threatened. In the worst cases, psychosis and major psychiatric symptoms may occur. Rauch’ stated that emotional turmoil and perceived threats to the integrity of the self interfere with psychological integration of the new heart: “Transplant professionals generally agree that psychological rejection of the heart is sometimes associated with physiological rejection”. Frierson14 reported that patients often fear that they will assume some characteristics of the deceased donor and feel a “sense of rebirth.” He reported that one man worried about developing suicidal characteristics after learning that his heart had come from a person who had committed suicide. The author stressed two facts: (1) that some individuals seem to regard their heart as if it had a mind of its own by saying “the heart” and not “nzy heart” (like saying “my nose”). One patient even was quoted as saying: “the heart is rejecting me”, (2) that incorporation problems are not limited to donor organ recipients, but they extend to families and even caregivers. Patients also worry that they have to take on the sexual behaviour of the anonymous donor. Tabler and Frierson I5 described pa tr‘en ts wondering whether the donor “was promiscuous, oversexed, homo- or bisexual, excessively masculine or feminine, or afflicted with some sort of sexual dysfunction“. Many persons in their study reported changes in their sexual functioning after transplantation and adamantly believed that “the heart has 252
Quality
of Life Research . Vol 1 .2992
made all the difference”. This irrational, but common belief of incorporation may even alter sexual concerns on the part of patients and their spouses. The association of the heart with emotions may also help understand the intense public interest that heart transplant programmes have generated even in the mass media: We can read journalist’s questions like “Do you as a Moslem have problems with the heart of a Roman Catholic?‘, I6 and “Had he received with her heart also her feelings? Would he from now on see the world with the eyes of a 17-year-old school-girl?“17 or headlines such as “Israeli soldier heart given to a Palestinian”. l8 As these headlines and the scientific work illustrate, having a donor heart may disrupt or at last disturb body image as well as the former personality, and postoperatively patients must therefore redefine and redesign the sense of the self. Since 1984 at our transplant centre we have been confronted with patients thinking about the significance of the new heart for their future life. We had one patient who preoperatively stated that he would “accept a heart only from a person as good-natured as himself”. Another patient refused to accept the heart of a woman, and yet another developed psychiatric disorder suspecting that a hen’s heart had been given to him. In view of these experiences and the scientific references we conducted a study to obtain information about the feelings and attitudes transplant patients have towards their donor hearts, and if or how they feel changed in personality after surgery.
Met hods A consecutive sample of 47 patients (45 men, two women) who were transplanted over a 2 year period in Vienna, Austria, were interviewed about 3 months after surgery. In twelve patients the indication for heart transplantation had been coronary heart disease, in 23 cardiomyopathy and in two mitral valve disease. They were between 17 and 66 years old (mean age: 47 years). All but four were married. A clinical psychologist asked them about their feelings about and reactions to the graft in a semi-structured interview. Regarding change of personality, our main interest focused on the following question: “The heart is often seen as source of feelings, emotions, and centre of personality. If it is like that, changing the heart must result in changed personality. Surely, it is a matter
Personality changes after transplant of opinion. Please, let us know your opinion, your experience up to now: Do you feel the same way about yourself after heart transplantation, or do you feel changed?’ The patients were familiar with the interviewer because she had known them since their admission to the waiting list, and open, honest answers could be expected. The interviews took place in the hospital on the occasion of the last routine check-up before discharge home and were tape recorded (with permission of the patients), then transcribed and finally evaluated with regard to the question stated above.
Results During the evaluation of the material it became evident that our patients can be divided into three groups: 1. Persons who stared that their personality has nor changed at all (n = 37 or 79%) Statements of these patients were much interesting then originally expected.
saying “my heart comes from a Turk. So perhaps I will spend my next holidays at home in Turkey . . .” When the interviewer showed interest and started to take their statements seriously, all six of them broke in saying that it was nothing but a joke, nothing to be taken seriously anyway. -two patients who stated that they did not feel changed at all, made a revealing additional remark which made us think that they did wonder about changes in personality: “No, not at all, I’m the same as before. Also my folks tell me that I’m exactly the same as before” “No, of course not, I have not changed, what nonsense! I’ve also asked my wife whether I’m changed in any way, and she said no, I’m the same as before” 2. Persons who stared that their personality had indeed changed, but nor at all because of the new organ (n=7or 15%)
more
-29 patients abruptly stated that they did not feel changed in any way, that it was “nonsense to think about that”, and abruptly switched to another topic or ridiculed the question (“this pile of flesh?‘). -six patients affirmed that no change whatsoever had occurred, but immediately made a ‘joke’ which apparently was not at all meant as a joke: It was evident that three of them-menhad problems with their female donor hearts. They wanted to discuss the problem and at the same time were afraid of talking about it, and this ambivalence lead to ‘jokes’ such as: “Well, if that’s the case, I’d have go out chasing men from now on, wouldn’t I?” “You aren’t saying I’m gay now, are you?’ “I have the heart of a women now, but still enjoy watching other women. I haven’t turned lesbian, have I?” Two of these six patients assumed that their heart must have come from a night person or a nightwatchman, because when they still had their old hearts they used to go to sleep very early, but since transplantation they were not at all sleepy until midnight. One patient laughed
These patients said that opinions, preferences, their way of looking at life and their way of life in general had changed postoperatively. They put it, for example, as follows: “Yes, I have changed, but this, I’m sure, has nothing to do with the heart. I’ve simply ordered my priorities differently, and have a new outlook on life. Many things that were of primary importance to me before, are secondary now and vice versa.” One patient summed it up as follows: “The soul is still the same, but the outlook on life has changed’. 3. Persons who experienced a distinct change in personality clearly due to their donor hearts (n = 3 or 6%) These patients follows:
described
their
way
of life as
P(atient): “Yes, I have changed. I want to avoid any kind of stress, if possible, and I have become much calmer.” PS(ychologist): “Do you think you have changed, or that something has changed you?’ Quality of Life Research . Vol 1 .1992
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B. Bunzel et al. I’: “The new heart has changed me. One say, well, not exactly, but one might like that: the person whose heart I got calm person, not hectic, and his feelings been passed on to me now.”
could put it was a have
P: “Yes, I think I have changed.” PS: “Because of the new heart?” I’: “Yes, maybe, I don’t know really.” PS: “What is it that in yourself seems a bit different now?” P: “I love to put on earphones and play loud music, something I never did before. A different car, a good stereo-those are my dreams now. And I have thoughts now that I never had before.” (remark: patient: 45 year old man, donor 17 year old boy) The third patient behaved as if the donor was still alive inside him. In his fantasy, the donor was growing older with him. So the patient felt as if he was living two lives. When asked how he was, he used to say “WE are o.k.“. In the interview he (37, divorced and remarried) pointed out: I, . . . actually my wife and I, we could get married in church now. Because I’m no longer the one she originally married. I’ll write to the Pope. . .” It must also be mentioned that not only patients, but also their spouses and their friends suspected a change of personality to go hand in hand with a new heart. Wives of patients often ask the psychologists before surgery whether they have to expect changes in feelings or behaviour on the part of their husbands after they have got “another person’s heart”. The significance of the heart regarding feelings and personality and its importance when replaced was best shown by one male patient who described the reactions of his family in the interview: “I have two sisters, I am the youngest in the family. My father is Tyrolean, and my two sisters were born in Tyrol. But I was born in Vienna. In the transplantation I got the heart of a Tyrolean. Since then my sisters have been saying, now you are finally one of us .”
Discussion Sir Peter Medawar” quoted: of organs will be assimilated 254
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“The transplantation into ordinary clinical . 1992
practice-and there is no need to be philosophical about it. This will come about for the single and sufficient reason that people are so constituted that they would rather be alive than dead.” This opinion seems to be the usual attitude of surgeons towards transplantation. One psychiatrist, Peter Shapiro, 9 contradicts this: “Although cardiac surgeons may emphasize the operative procedure, it is what precedes and follows surgery, that is, for patients and for others involved, the enduring Our results support Shapiro’s focus of attention.” statement that especially transplantation of a donor heart means intense stress for the patients. The heart occupies a special position in people’s minds, it is not seen as an organ like the others. Over the centuries it has become a symbol of life, power, soul, love and the reasons why Kuhn 2~~~~~~~~t~~~~i~~~~~ part of the body “uncomparable stress”. Rodgers21 speaks of a “psychological transplant” beneath the organic one, and Castelnuovo-Tedesco’2 emphasizes that a new organ is not at all “psychologically inert”. This stress, in conjunction with medication and organic brain symptoms, may result in psychiatric symptoms after surgery, which are reported by many authors: generally recognized postoperative problems of transplant patients include mood disturbance, 2P22,23affective illness24,25 and organic mental syndromes,20 which occur in up to 50% of transplant patients. A donor heart recipient has to deal with the loss of an organ, but he must also assimilate the new organ into the self. As Shapiro’ points out, two kinds of body image effects are observed in transplant patients: in addition to the actual physical changes caused by medical therapy (e.g., excessive weight gain due to steroid drugs, hirsutism and acne due to cyclosporine) there are the conscious, preconscious and unconscious fantasies of incorporating aspects of the donor’s personality together with the donor heart-a kind of stress that is often aggravated by acquaintances of transplant patients who want to know “if it feels strange to have someone else’s heart inside you”. In his opinion, most patients ultimately deny the emotional impact of having within themselves the organ of another person. Shapiro, as well as Kuhn2’ and Mai state that a variety of defenses are used to cope with this kind of stress, above all denial strategies such as depersonalization (“just a pump”) and repression (“I never think about it”). This corresponds with our findings: almost 80% of our transplant patients (group 1) made such remarks, which suggest complete or partial denial.
Personality changes after transplant The high prevalence of denial in our study also corresponds with the results of Mai: 18 of the 20 patients in his follow-up showed denial towards graft and donor 30 to 90 days after transplantation. He suggested that denial, defined as conscious or unconscious repudiation of part or all of the total available meaning of an event to allay fear, anxiety or other unpleasant effects26 is an important protective and adaptive function in heart transplant patients. Denial helps the patients to avoid feelings that may be unbearable for them at the time. The intensity of the threat as perceived by the individual is the key factor: the greater the threat perceived by the individual, the more likely he/she will resort to defense mechanisms-usually in form of denial: “The person will cope if he can, defend if he must, and fragment, if he is forced to do SO.“*~ As Kuhn*’ writes I “adjustment to the rigors of the heart transplant protocol requires a degree of personality strength, resilience and adequacy of coping skills, which some patients simply do not possess.” It must also be noted that apparently men had difficulties accepting a female donor heart and assimilating it into their male body image: men are afraid of becoming effeminate after receiving a female heart. Literature also discusses the problem of a man accepting a woman’s heart: Cardin** emphasised the fact that male persons express concerns that if they received the heart of a woman they would become more effeminate. Rauch’ reported the case of a 42 year old fireman who had received a heart from a woman and worried that his firehouse colleagues would no longer accept him. Interestingly, among our patients no woman complained about having got a male heart, although they experienced clear signs of masculinity such as extensive hair growth. They correctly blame medication and not the male donor organ for it. All this suggests that fantasies about the donor, the donor heart and its influence on the recipients’ personality must be common, although they seem to be so threatening to the self-concept that denial must unconsciously set in to cope with. The seven patients in group 2 reported changed values and priorities. This is a phenomenon that is often observed after a radical event in someone’s life. The patients are clearly aware of the change, which is perceived as change of personality. Things, people, or activities that were considered very important before seem to be completely irrelevant after the transplantation, while others, that were neglected before, are given a higher
priority postoperatively. Patients perceive of themselves as changed, at the same time they are also perceived as changed by the people surrounding them. Patients describe this change as a reaction to a life-threatening experience. Three patients (group 3) reported a distinct change of personality because of the new heart given by an unknown person. They said that they had different feelings and preferences as they were forced to accept those of the donor. They stated that the dead donor was alive inside their bodies, which influenced their emotions and their behaviour. At first sight these incorporation fantasies remind one of the so-called “multiple personality disorder” (MPD; Ref. 29), part of the dissociative disorders, which are very rare, and there is controversy if MPD actually exists. It contains the apparent existence of two or more distinct personalities within an individual with only one of them evident at one time, and the patients often show a sudden change from one personality to another. In MPD patients the new personality is supposed to have originated in stressful events such as rape or severe traumata in childhood. The feelings of heart transplant patients reported by group 3, however, differ clearly from MPD syndromes: they seem to be aware of their own personality and the suspected one of the donor at the same time; they fantasize about the incorporation of the donor and some of the donor’s personality traits. Summarizing our results, we may conclude that there seem to be problems the transplant patients have to cope with regarding incorporation of the graft. It has become evident that heart transplantation is not simply a question of replacing an organ that no longer functions. Even though we live in a high-tech age, we cannot get rid of the notion of the heart as the seat of all feelings, of love and personality, and this view influences the acceptance of the heart as just another part of the body. Rudiger 30 described this notion very well: “It is much harder to change or abandon an age-old idea deeply rooted in religion, art and poetry and stifled by conventions than to understand intellectually the anatomical and physiological conditions for the transplantation of organs. And even when we realise by which means the exchange of an organ is feasible, for a long time we will not believe that this is the very same heart that houses feelings and forms the personality. Such a double-tracked coexistence of believing and knowledge belongs to the distinctive characteristics of an epoch that has Quality
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B. Bunzel et al. not yet succeeded in bridging “intellect”. We are prisoners pictorial imagination.”
over “heart” and of our ancestor’s
15. 16. 17.
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(Received 26 April 1992; accepted in revised form 22 June 2992)
