On Heart Transplants and Distress: A Qualitative Response to Selves & Burroughs’ Letter

Abstract

To the Editor: We write in response to Selves & Burroughs’ letter (1), grounded in experiences with liver transplant recipients in the United Kingdom, which takes issue with the distress we reported in “The Obligation to Say thank You” (2). The authors argue that we “overcomplicated” and “overemphasized” the distress expressed by heart transplant recipients when writing, or attempting to write, a thank you letter to the donor's family. Our paper “The Obligation to Say Thank You,” is centered on the experiences of heart transplant recipients in Canada, which we identified as a potential limitation of our work. Our work is theoretically driven and qualitative in its methodology, so we make no claim to generalizability to other transplant populations in other hospital settings. Letter-writing practices such as the use of first names or “never setting appropriate time limits,” as detailed by the UK authors, will often vary from our own practices in Toronto. It follows then that the authors may “have experienced” liver recipients in their hospital center in entirely different ways. Those recipients may “gain a sense of relief” at knowing they can write a letter of thanks, and “feel that writing a letter is a part of expressing sympathy” and “acknowledging they are progressing well” (1). However, the authors do not reference any research methodology or published findings that would help us understand their claims to “knowing” recipient thoughts and feelings around the letter. We query what a letter-writing experience might be like for a recipient who is not “progressing well” or, as we have argued elsewhere (3), does not feel as though his or her life has “been restored.” What if that life has been disrupted beyond repair? What does a letter writer feel then? As these kinds of questions disrupt the very powerful “gift” discourse that dominates transplantation and drives donation, we are in no way surprised that those who depend on that discourse may take issue with our work. Books such as Thank You for Life (4) are believed to improve donation rates, whereas work that suggests all might not be well and good with transplant recipients may have the opposite effect. We feel we have a moral obligation, however, to better know the worlds of transplant recipients and to share that knowledge widely. To that end, and to our own surprise, our phenomenologically informed visual methodology has brought to light issues for heart transplant recipients that we have never before seen in our daily interpersonal interactions with patients, or in the usual questionnaires and assessments we carry out in the hospital (3, 5). Indeed, by taking the conversation out of the clinic and into people's homes, we have been able to learn more about how deeply “complicated and distressed” recipients may feel. Like our colleagues in the United Kingdom, we have always acknowledged the “difficulty of writing a letter” but we never knew just how difficult it was. Now, we do know, we can simplify the issue no more, for “complicated” emotional responses may actually be the new “normal.” The authors of this letter have no conflicts of interest to disclose as described by the American Journal of Transplantation.