By Austine Duru
The decision to donate organs or and the willingness to receive donated organs are often influenced by religious, cultural, or social factors.
However, clinicians and transplant teams largely underestimate the importance of these forces. In “Organ donation, transplantation and religion,” the authors highlight the possible knowledge gaps and barriers that hinder effective communication during the organ donation and recovery process. The authors aim to “provide an overview on how the different religions view transplantation and organ donation, with an emphasis on practical points for health care professionals who are involved in transplant listing, organ donation and retrieval, and transplantation itself” (Oliver, M., Woywodt, A., Ahmed, A., and Saif, I., 2011). In a subsequent article, “Donating in good faith or getting into trouble: Religion and organ donation revisited,” the authors addressed the skepticism and religious concerns that still impact attitudes, and how the organ transplant community can benefit from an open and honest discussion of these issues. This will be valuable reading for individuals who work with a diverse population of patients.
Anyone who has been part of the organ procurement process at the end of life will understand the importance of balancing persuasion to donate and emotional support for donor families. In “Providing social support in a persuasive context: Forms of social support reported by organ procurement coordinators,” Anker, A. E., Akey, J. E., and Feeley, T. H., (2013), investigate several strategies used by OPCs for providing social support to donor families. Some of these strategies will be familiar to chaplains who work with patients and families at the end of life. Professional chaplains who sometimes serve as “requestors” in collaboration with the OPCs have to be careful not to rupture the relationship with families that may hinder spiritual care.
A conversation with the parents of a sick or dying child can be a unique challenge, and “Exploring organ donation with families of pediatric patients” is a valuable article by Jessica Lee Barr (2017). This is aimed to be an evidence-based resource for caregivers to help grieving parents and families make informed decisions about organ donation for a dying child. The article does a good job of separating the myths from the facts of organ donation and highlights the correlation between consent to organ donation and the positive relationships between caregivers and grieving families. It also introduces certain themes and concepts that are crucial for caregivers to know when dealing with donor parents, including decoupling techniques to help address the disorienting feelings of uncertainty for donor parents.
End-of-life organ donation has been described as a meaningful way to aid donor families in the healing process. Consent to organ donation is obviously a critical first step in the journey. In “Request for organ donation without donor registration: A qualitative study of the perspectives of bereaved relatives,” Jack de Groot and his co-investigators (2016) examine situations when a patient did not register in advance and family members are relied upon to make that determination at the end of life. The findings suggest that certain factors inhibit family members’ willingness to donate after death, including “feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.” This insight is helpful for chaplains and those providing bereavement support or organ donation support. The authors reached similar conclusions in a closely related article, “Decision making on organ donation: The dilemmas of relatives of potential brain dead donors.” The authors strongly recommend coaching families through the donation process itself.
Cultural considerations and the role of religious leaders in donors’ decisions about living or deceased organ donation cannot be overstated. Wong, L.P., (2010) addressed some of these issues in “Information needs, preferred educational messages and channel of delivery, and opinion on strategies to promote organ donation: A multicultural perspective.” The author identifies the gap in information needs among different minority groups, and suggests some culturally sensitive messaging to mitigate the sociocultural barriers to organ donation.
The need for organ donation is significantly higher among ethnic and minority populations, but these populations also have a low donation rate. This leads to increased wait times and higher mortality rates. Morgan, M., Kenten, C., Deedat, S., Farsides, B., Newton, T., Randhawa, G., Sims, J., and Sque, M. (2016) discussed these realities in “Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on donation, transplantation and ethnicity (DonaTE).” The findings suggest a need for targeted messaging and training aimed at ethnic minorities for the purpose of addressing cultural issues surrounding organ donation.
The organ and tissue donation community across North America has struggled with the declining rates of organ donations, and the increasing demand for donor organs. Several interventions have been aimed at healthcare professionals to help increase organ donation. Witjes, M., Jansen, N.E., Hoeven, J.G., and Abdo, W., (2019) completed a systematic review of interventions that are most effective. Their finds were published in, “Interventions aimed at healthcare professionals to increase the number of organ donors: A systematic review.”
Best practice standards in organ donation suggest that conversations with families could be improved to support well-informed decisions and potentially increase organ donation rates. Following a gathering of industry experts in Montreal in 2014, their recommendations were published in the May 2017 edition of Transplantation, under the title, “End-of-life conversations with families of potential donors.” The experts issued 12 recommendations and corresponding supporting guidelines. Of note are the guidelines around family support, and the skills that are essential in leading donation conversation with families. Also significant is the list of potential research that would extend knowledge and close information gaps in this area, as well as some system initiatives that require further investigation – such as training, organizational culture, and public awareness.
Austine Duru, BCC, is vice president of mission for Bon Secours Mercy Health in Northeast Ohio.
