Experiences of the Live Organ Donor: Lessons Learned Pave the Future

Introduction

The experience of a live organ donor is multi–faceted and is as unique as each person who agrees to take a risk to save another. Factors include: type of organ donated (kidney vs. liver), relationship to the recipient (related—biological or non–biological vs. non–related), decision–making and motivation for donation, support systems available within and outside of the transplant program, and outcomes of the donation for both recipient and donor. The variety of experiences is apparent in the narratives within this special issue. I want to thank the authors of each story for sharing their experiences of the live donation process. As difficult as it must have been to write, it was difficult for someone like me, a transplant professional who is a strong advocate for quality donor care, to hear. But with each success and failure of transplantation, we can learn in the hopes of improving things for the next.

Despite the fact that the field of transplantation is over 50 years old and the first kidney donors were live donors, viewing the field of live donation as a subspecialty of transplantation is a new concept (LaPointe Rudow, 2011). Live donation is, in fact, as specialized as lung transplant, liver transplant, transplant infectious disease, and kidney transplant. All of those subspecialties have clinicians and researchers with expertise in the area. Live donation experts exist and teams of live donor professionals staff most transplant programs today. Additionally regulatory bodies, professional societies, and advocacy groups strive to improve the care of the live organ donor (Medicare Conditions of Participation, 2007; Organ Procurement and Transplant Network, 2011; National Kidney Foundation 2011). Many years have been spent perfecting the surgical procedure and refining the proper testing to ensure that donation is safe for the donor. Live donation is, however, more than a surgery; in recent years, transplant professionals acknowledge that the psychosocial impact of donation on donors, whether positive or negative, can be significant but it is not yet completely understood.

Much debate has occurred as to the components of the psychosocial evaluation, length and type of follow up, and the role of the independent live donor advocate (Amsterdam Forum, 2005; Ommen et al. 2011; Pruett et. al. 2006; Schroder et. al. 2008; Simpson & Pomfret 2012). The ethical concepts of paternalism and autonomy are in tension as we attempt to justify live donation. Perhaps nowhere else is ethical deliberation more vigorous than in the debate regarding whether informed consent for live donation is attainable, driven largely by the plight of the patient and the consequent vulnerability of the donor in an effort to help the patient. These quandaries are illustrated in the compelling narratives of this special issue.

Narrative Themes

Based on an analysis of the narratives, I will present a series of dominant themes that emerged from the stories; these will be exemplified by illustrative quotations from the live donor’s narratives.

Live Donation has Psychological Effects on the Donor

There are many psychological effects of live donation both pre–and post–donation. The narratives describe feelings such as “I felt like a hero,” “feelings of anxiety, anger and ambivalence,” “it’s the best thing I ever did,” “I would do it all over again,” “a sense of loss,” and feelings of “suicidal thoughts.” The dichotomy of feelings expressed demonstrates the uniqueness of the live donor experience. One donor has nothing but good things to report regarding his or her experience while another feels lasting ill emotional affects requiring ongoing counseling even though the recipient has done well.

Pre–donation psychological issues

Traditionally, the psychosocial evaluation explores the pre–donation emotional and family stressors to ensure that there are no issues or underlying psychiatric disorders that will make donation high risk for psychological complications. All donors writing the narratives were found to be suitable donors. That being said, there is no standardized approach to the psychological evaluation. Organ Procurement and Transplant Network (OPTN)/United Network for Organ Sharing (UNOS) (Organ Procurement and Transplant Network, 2011) have policies and guidelines and the Centers for Medicare Conditions of Participation (COP) (Medicare Conditions of...