Letters From Transplant Recipients to the Family of Their Donors Are a Positive Experience for Both, and Can Help Donation

Authors


Andrew Kenneth Burroughs, andrew.burroughs@nhs.net

To the Editor:

We read with interest the article concerning the distress some heart transplant recipients had in writing anonymously to their donor's family, expressing thanks for the gift of donation (1). Although it brought out several interesting aspects, we believe that the authors overcomplicated and overemphasized this “distress” and confused it with a normal emotional response and its consequence (the letter), which is of benefit both to the recipient and the donor family. Indeed the authors questioned whether writing thank-you letters should be done at all: “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).” We work in a liver transplant center, and have a very different experience and view the “thank-you letter” in a wholly positive light.

It is true that our patients often have told us that writing to the family of a donor is the most difficult letter a person can ever write. Here, at the Royal Free Hospital, London, we acknowledge this fact and discuss it openly with our patients. In fact, the possibility of writing a letter is often raised by our patients during their assessment for transplantation and they seem to gain a sense of relief knowing that it is something that is possible for them to do following their transplant. The option of writing to the family of the donor is mentioned in our transplant booklets and we sometimes touch on the subject during the initial weeks after a transplant if prompted by the patient.

The transplant patients feel that the letter is part of expressing their sympathy for the family's loss, while at the same time, acknowledging that they are progressing well following their transplant, which relieves a certain sense of guilt (that they are well and unfortunately the donor family has suffered a loss) as they can positively express, in the letter, that the family's loved one's death has resulted in something good—indeed in a life restored. We have experienced the fact that although the donor family has gone through their own personal tragedy, the “thank-you” letter does not compound this tragedy, but instead gives strong support to the decision that the family took about organ donation—that it was the right one, particularly if the subject of organ donation had not been discussed previously with family members prior to their loss. In addition, we have experienced donor families saying that the letter has helped in the grieving process.

Rather than strict anonymity, we actively encourage our patients to use their first name in their letter and express from their hearts what their transplant has meant to them and their families. This personal response also extends to patients occasionally informing the donor families that the transplant recipient has planted a particular plant/tree that blossoms at the time of year of their transplant, or that they light a candle in remembrance, which reinforces their respect and gratitude to the donor. We work in a multiethnic, multicultural and multifaith environment and have not found a cultural or spiritual variation in writing these letters, just a heartfelt gratefulness and a desire to express thanks, which suggests we are dealing with a very basic and fundamental human emotion and reaction.

It is important though, to recognize that the transplant recipients go through a significant physical and psychological adjustment, with the relief of receiving a transplant and a return to normal health. People naturally cope with these changes differently and should be allowed to do so, with the support of those around them, including the transplant team. Our experience is that patients want to write their letters at the right time for them, when they feel physically and psychologically able. We therefore never have set “appropriate time limits” and this is the case at least for the other liver transplant centers in the United Kingdom; for some recipients, the right time may be straight away, for some when they return home and for others maybe a year or even years later—we also have experienced a series of letters over many years in which recipients continue to express thankfulness and concern about the donor's family loss. It is true as the article states that sometimes a member of the recipient's family, either writes on behalf of the recipient or wishes to write in his/her own right to the donor family—however we have not found these letters any less well received; and as usually these different ways of writing are in keeping with how the recipient family has dealt with the transplant and recovery, we can see no problems with this.

Our experience in being the conduit of these letters, reading them (to ensure anonymity) and with permission making a copy so that inadvertent loss in the post could be remedied, has made us recognize how powerful these letters are in expressing what transplantation is really all about. This prompted us to compile a collection of letters into a not-for-profit book, as a tribute to donors and their families when they had to make the brave decision to donate, at a time of personal tragedy (2). We contacted both the families of donors, as well as their paired transplant recipients, and did not encounter one refusal to publish their letters—we feel if there had been so much “distress” in writing the “thank-you” letter, and thus perceived as an unpleasant experience by the recipients, we would not have had the enthusiastic support from both parties to make these intimate letters public. The main comment from donor family members represented in the book is that the letters have given them “pride and comfort that so much has been achieved.”

Indeed we hope that the book will encourage more writing from recipients to their donor family, as this is the most important way to recognize the altruistic act of donation as a positive force in human society, across all ethnic, religious and cultural differences. Moreover another purpose in publishing the book “Thank You for Life: Letters From Transplant Recipients to Donors’ families” (2) is to encourage donation. We believe the letters when read by individuals, who as yet have not discussed with their families the possibility of donating when they die, are a powerful motivator, which will encourage this discussion and willingness to donate. “Thank-you” letters from organ transplant recipients to their donors are necessary and are a testament to the life-transforming power of transplantation. The “distress” in writing these letters is a natural emotion about which the recipients must be forewarned, but it must not be allowed to be a “bar” to the writing itself.

Disclosure

The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation.

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