American Journal of Transplantation 2011; 11: 619–622 Wiley Periodicals Inc.
C 2011 The Authors C 2011 The American Society of Journal compilation Transplantation and the American Society of Transplant Surgeons
Brief Communication
doi: 10.1111/j.1600-6143.2010.03419.x
The Obligation to Say ‘Thank you’: Heart Transplant Recipients’ Experience of Writing to the Donor Family J. M. Poolea , M. Shildrickb , E. De Lucac , S. E. Abbeyd , O. E. Mauthnerc , P. D. McKeevere and H. J. Rossf,∗ a Ryerson School of Social Work, Faculty of Community Services, Ryerson University, Toronto, Canada b School of Sociology, Social Policy and Social Work, Queen’s University, Belfast, Northern Ireland c Cardiac Transplant Program and d Department of Psychiatry, University Health Network, Toronto, Canada e Bloorview Research Institute, University of Toronto, Toronto, Canada f Divisions of Cardiology and Transplantation, University Health Network, Toronto, Canada ∗ Corresponding author: Heather Ross,
[email protected]
Transplant recipients are encouraged to write anonymous thank-you letters to the donor family. We prospectively explored heart transplant recipients’ embodied responses to the ‘obligation’ to write a thankyou letter using audio/video-taped open-ended interviews (N = 27). Fifteen of the 19 participants, who wrote letters to the donor family, expressed or visually revealed significant distress about issues such as the obligation to write anonymously and the inadequacy of the ‘thank-you’. Writing the thank-you letter is not a neutral experience for heart transplant recipients. Rethinking the obligatory practice regarding the thank-you letter and developing the necessary support for the recipient through this process is necessary. Key words: Donor family letters, heart, obligation, phenomenology, transplantation Abbreviations: UK, United Kingdom; US, United States; REB, Research Ethics Board; PTx #, Study Participant number. Received 28 October 2010, revised 03 December 2010 and accepted for publication 18 December 2010
exchange of correspondence between donor family and recipient. Marcel Mauss suggested that the act of giving a gift is governed by the obligation to give, the obligation to receive and the obligation to repay (2). The notion of gifting was later applied to organ transplantation (3–5). More recently, authors have begun to examine the correspondence penned by recipients and donor families (6–9). Rare however, is the theoretical analysis of the ‘obligation to say thank you’. Our transplant manual dedicates only one page to the issue of the thank-you letter, briefly acknowledging that writing the letter may be difficult for recipients. The Heart Transplant Coordinator vets the content of all letters removing identifying details and then forwards them on to the organ procurement agency. The Coordinator also ‘reminds’ recipients who have neglected to write, and while no moral obligation is explicitly spelled out in the manual, the implication is that the letter is a ‘mile post’ that should be passed. We previously reported a high prevalence of distress and disruption related to bodily integrity and identity in heart transplant recipients (10). The aim of this paper was to prospectively explore how heart transplant recipients perceive, express and embody the experience of writing a thank-you letter to the donor family.
Methods Design A descriptive, exploratory, cross-sectional prospective qualitative design using digital audio and video taping of interviews with heart transplant recipients was employed. The study was approved by the Research Ethics Board of the University Health Network (REB# 07-0822BE). Each patient gave written, informed consent prior to participation. The study took place in a tertiary care academic health science center heart transplant program.
Participants
Introduction Clinical practice encourages heart transplant recipients to write a thank-you letter to the donor family. Canadian, US and UK national policies dictate that such letters are written anonymously (1) and to ensure compliance, bureaucratic structures are in place to both facilitate and vet any
Consecutive potential participants attending the posttransplant ambulatory follow-up clinic were identified and consented. Entry criteria included the following: age ≥ 18, medically stable (Functional Class I), 1–10 years posttransplant, English speaking and no evidence of cognitive compromise. Twenty-nine patients were approached, two declined to be interviewed for undisclosed reasons (1 man and 1 woman) leaving a study sample of 27 participants, a number in keeping with sample sizes utilized in qualitative research (11). Technical difficulties occurred during the recording of two interviews leaving a final sample of 25 participants.
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Table 1: Examples of distress
Detailed methodology has been previously reported (10). In brief, the interviews were semistructured, open-ended and conducted by one of two masters trained research nurses. About 30 min was spent before the start of the interview, establishing rapport and trust with the participant, ensuring confidentiality as well as answering questions about the research. Brief orientation to the digital audio/video equipment was given along with instructions on how to turn it off at any point during the session should the participant so desire. Sample interview questions and prompts included: ‘Would you feel comfortable talking about how you picture/think about the donor?’ (10).
The process of writing the letter PT× 6 ‘I hope these people, you know, the family receive this letter. . .[sighs] I don’t know how to say thank you . . . it’s not. . .not enough, it’s not enough. . .I really owe them something’ PT× 12 ‘I wasn’t really prepared for how intense the emotions would be’ Waiting for a response PT× 17 ‘We didn’t get any letter, no. Maybe they sent the letter somewhere that disappeared, maybe, . . .’ Inability to write the letter PT× 16 ‘I don’t know how to say thank you without being personal. So I haven’t done that [sobbing]’ PT× 20 ‘I just don’t know where to go with it. I don’t know how to do it properly’
As per visual methods practices, interviews were digitally audio/visual taped, and immediately after each session, the interviewer compiled detailed field notes of his/her observations. Allowing for pauses, silences and laughter in addition to dialogue, audio files were professionally transcribed verbatim and coded using conventions established by Poland (12,13). Transcripts, field notes and digital video files were also time coded and imported into the NVIVO8 software program.
Results The majority of patients were male (70%), with a mean age of 53 years (±13), age range 18–72 and a mean time since transplant 4.1 years (±2.4). The study population was comparable to the remainder of the nonstudy heart transplant population at our center and with the demographic characteristics of a typical transplant program (14). Twenty-five patients completed the interview, and none declined to answer any questions or asked to erase interview segments. The average length of interview was 74 min ranging from 29 to 113 min. The donor letter was discussed by 24/25 recipients, 20 of whom displayed distress manifested as verbal expressions of loss, anxiety, despair as well as physical expressions such as crying, sighing, being teary eyed, suddenly dropping the tone of voice or volume and struggling to control emotions. Nineteen of 25 recipients sent a letter to the donor family. The majority undertook the task in person, but four were written on the recipient’s behalf—two by wives, one by a daughter and one by a nurse—although it is not clear to what extent each of the recipients participated in the process. Three recipients corresponded with the donor family on more than one occasion. What is clear is that 15 of the 19 participants, who corresponded, exhibited some form of distress resulting from the experience. All five recipients who were unable to write a letter exhibited distress. One recipient who had been transplanted at a distant center denied any knowledge of the letter writing process. Recipients conveyed distress around three broad themes: the process of writing the letter, waiting for a response and the inability to write the letter (Table 1). The process of writing the letter Recipients expressed distress through a variety of comments, for example, ‘OK, it’s only a note, right, but still very hard for me to do’ (PT×01). More telling yet, 15 partic620
ipants visibly shed tears, lowered their voices or struggled to control their emotions when asked about the thank-you letter, and two other participants spoke of the difficulty they experienced related to the letter writing. Importantly, participants revealed that they found it especially difficult to write anonymously and still find the ‘right’ words to communicate their feelings: ‘I’m not sure if it would be better if everyone knew each other, but it is a [choked up] very, very emotional process’ (PT×19). Others expressed strong concerns about upsetting the donor family; ‘Yeah, I’ve tried to start a letter quite a few times. . . I don’t know how it will be received. Like, I don’t know if it’s a. . . something that will bring back a bad memory for the family. . .’ (PT×20). Waiting for a response Of the 19 who sent a letter, just 5 confirmed a response from the donor family, one recipient was uncertain, but thought his ‘wife might know’ (PT×27). Several conveyed a specific desire to connect with the donor family, and those who had written but received no reply expressed significant distress at the perceived failure of their efforts: ‘We write, we send a letter—but they never responded back. . .after four or five months. . .I ask all the time I’m there if I can meet these people, but they say not. . .I don’t know, for I meet them maybe they’re going to come part of my family’ (PT×15). Inability to write the letter Five more study participants confirmed they did not write a letter, and all demonstrated distress in relation to the letter-writing obligation. Comments include: ‘I would not know where to begin . . . I mean, I got life, they lost a life’ [as recipient crushed a plastic water bottle] (PT×07); ‘I’ve written a thank-you letter 15,000 times in my mind’ (PT×16). American Journal of Transplantation 2011; 11: 619–622
The Obligation to Say ‘Thank You’
Discussion Our audio-visual data suggest a profound degree of embodied distress surrounding the donor letter experience. Compared to other aspects of the posttransplant period and in keeping with work by Barnwell (6), Sque (8) and Vajentic (9), our findings suggest this is neither an inconsequential nor a ‘neutral’ experience for recipients. Indeed, we concur that the process of writing a letter for the first time is extremely difficult as is dealing with the disappointment of not receiving a response (8). Others have also argued for a ‘dark side to receiving’ an organ (Lamanna 1997, p. 176), that the ‘tyranny’ of such a large gift may be harmful to a recipient’s survival (3). Similarly, in Barnwell’s (2004) Australian study, writing a personal letter of thanks remained just too difficult for 65% of recipients (6). Sque (2000) concluded that US recipients write a thank you letter at a mean of 9 months after receiving their transplanted organ, and that the focus of their letters was on gratitude and details of their personal ‘biography’ (8). Our data suggest difficulty in maintaining anonymity. In addition, we found that distress was still evident years after the letter was actually written. While for some recipients only 11 months had passed since they wrote their letter, for others as many as 113 months had passed. Additionally, there are profound contradictions surrounding the obligation to say thank you. The conventional discourse surrounding transplantation promotes an understanding of the new heart as a depersonalized ‘engine’ from a depersonalized donor (15). The ‘requirement’ of a thank-you letter undercuts this unproblematized narrative by placing the recipient ‘in relationship’ with a ‘real’ person and their ‘real’ family. As one recipient remembered: ‘(It) was a little more painful, simply in that. . .because I got to learn about this person. . .although they were realistic before, but all of a sudden they have a family. . .it changes things’ (PT×13). Recipients expressed distress around the challenge of writing without reference to their selves, lives, work and families. Following government regulations to be anonymous, clinical commendations to be timely, their sense of not being able to find the right words and fears of upsetting the donor’s family, it is hardly surprising that recipients are disturbed by the apparently contradictory messages to which they are exposed. In being both encouraged to think gratefully about their donors but constrained in how this emotion can be expressed, the letter becomes a potent source of dysphoria. From a phenomenological point of view, the problem is not that the letter disrupts an otherwise appropriate narrative of ‘getting a new part’ but that any attempt to reduce the process to just a technical intervention is bound to fail (16). Indeed, the interconnectedness of embodied selves overrides the intended depersonalization of the transplanAmerican Journal of Transplantation 2011; 11: 619–622
tation process. The desire to know more about the donor, expressed by several study participants, and the extreme difficulty of writing should be seen not as aberrations but as predictable expressions of the phenomenological experience of embodied intersubjectivity (17,18). From a phenomenological standpoint, the distress we found is predictable. Study limitations include that it was conducted in a single setting, within a large academic health science center that uses global transplantation protocols with an ethnically and socioeconomically diverse patient population; however, the sample may not be fully representative. The sample size was in keeping with those utilized in qualitative research (11). Patients were selected consecutively in clinic to minimize bias. Given its qualitative design, the results are not meant to ‘accurately’ represent the experiences of all heart transplant patients or recipients of other organs. Nonetheless, it is anticipated that the findings will have relevance for other transplant programs. More discussion, detail and support is needed for patients being asked to write thank-you letters, as we do not yet know how and when it is ‘best’ to do this (if at all). Given the diversity of recipients, we question whether the western practice of writing a thank you is appropriate for members of various cultural and spiritual communities or do practitioners need to explore other potentially meaningful modes of expression? A major concern for our recipients was the potential impact of this process on the donor family. Although some have begun to explore this issue (19,20) and Sque (2000) argues that ‘donor families have a continuing interest in recipients and their welfare’ (p. 36), clinical assumptions are still being made about what ‘should’ happen between recipients and donor families (8). Clearly, such assumptions are proving to be sources of acute distress for recipients already coping with a host of biopsychosocial issues. In conclusion, the seemingly innocuous process of a donor thank-you letter is associated with a profound degree of embodied distress.
Acknowledgments The authors would like to thank Stella Kozuszko and Mena Gewarges. Funding source: The project received peer-reviewed funding from the University Health Network MultiOrgan Transplant Academic Enrichment Fund. This grant supported one half-time masters prepared advance practice nurse to work in the capacity of a Research Associate, as well as the costs of audiovisual equipment, transcriptionists, software programs and patient travel reimbursements.
Disclosure The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation. 621
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