“It was my Daughter’s Greatest Merit”: Reframing Barriers to Organ Donation in Thailand

By Lucinda Lai | Standard Journal of Public Health

Abstract

In spite of Thailand’s technological capacity to perform organ transplantation, there is a severe national shortage of donor organs.  This article investigates the barriers and incentives to organ donation in the Thai context, including particular cultural, religious, ethical, and institutional phenomena.  Eighteen semi-structured, qualitative interviews with medical professionals involved with organ transplantation were conducted at private and public hospitals in Bangkok.  Full transcripts were analyzed using grounded theory methods, including multi-pass coding with a tiered coding rubric, for the development of a model.  The major barriers and incentives for organ donation fall under overarching themes that occur in one of three oppositional pairs: First, physicians feel a conflict between brain death as the natural demarcation of death versus a mere an artificial definition.  Second, the organ donation system relies primarily on physicians’ internal motivation for facilitating donation, rather than external incentive structures.  Third, physicians report feeling over-burdened by the prospect of facilitating donation, as transplant coordinators feel underutilized in the process.  Policy and education have the potential to reframe attitudes within each of these three thematic spectra in order to favor organ donation.  Additional study is needed to determine this model’s ability to improve organ donation in other countries.

Introduction

Consider this case from the October 20, 1998 issue of the Bangkok Post titled, “The Gift of Life.”¹ A mother was notified that her daughter and husband had been in a terrible car crash.  Her husband had died instantly.  Emergency vehicles rushed her daughter to the hospital, but the doctor declared her brain dead, with zero chance of survival.  Even though the mother was overwhelmed with grief, the doctor asked for her consent to donate her daughter’s heart, kidney, liver, and lungs to patients around the country whose own organs have failed.

This mother, like many Thais, feared that being buried or cremated not “whole” would cause the deceased to be reborn with those organs missing or defective in the next life.  She sought religious advice from a monk, who told her, “Giving life to others is a great merit.”  The monk may have even cited the popular story of the self-sacrificing bodhisattva (previous incarnation of the Buddha), who plucked out both of his eyes to give to a blind beggar.  Thus, Thai culture and Buddhist religion set up a tension in which families of brain-dead patients feel both reluctance and motivation to donate the deceased’s organs.

The purported existence of religious and cultural barriers to medical technologies, especially one with as much potential to save lives as organ transplantation, raises important questions.  To what degree does the notion of defective reincarnation actually stand in the way of people becoming organ donors?  What steps must be taken between the identification of a brain dead potential donor in the Intensive Care Unit and the procurement of the organs in the operating room?  How do medical professionals navigate the complex landscape of religious beliefs, sociocultural norms, intense emotions, and moral obligations implicit in organ donation?

Literature Review

Organ transplantation has become the therapy of choice for patients with organ failure.² Owing to the outstanding results achieved, however, demand for organ transplantation far outstrips the availability of donor organs.³ The discrepancy between demand and supply for donor organs points to the existence of barriers to organ donation.⁴ Understanding and overcoming these barriers is now a top priority for organ donation research.⁴

Since its inception, organ transplantation has been guided by the overarching ethical requirement known as “the dead donor rule,” which simply states that patients must be declared dead before the removal of any vital organs for transplantation.⁵ The ad hoc Committee of the Harvard University Medical School established “brain death” as a new criterion for death in 1968, defined as irreversible coma with no discernible central nervous system activity.  This notion of brain death establishes a necessary prerequisite for selecting potential donors and provides a conceptual basis for medical professionals to discuss the donation option.⁶

Current literature holds that technology is no longer the rate-limiting factor in organ transplantation.  Rather, it is the ability to obtain organs from suitable donors, which is limited by the low percentage of families who consent to donation.⁷ In Southeast Asia, the major challenges to promoting transplantation rest in the following areas: an inadequate donor supply, public willingness (or unwillingness) to donate, and social rather than medical or technical issues.⁸

Thailand was chosen for this case study as an example of a developing country with both the technological capacity to perform organ transplantation and a severe national shortage of donor organs.  Less than 1% of Thai adults are registered organ donors,⁹ compared to the 37% of American adults and 33% of UK adults.^10,11 In 2009, only 8.9% of waitlist candidates in Thailand actually received organ transplantations from deceased donors (Figure 1).⁹

Figure 1. Supply (deceased donors and organ transplant candidates) and Demand (waitlist candidates) for Donor Organs in Thailand, 2000 to 2009

This research specifically interviews transplant professionals in Bangkok regarding their experiences of requesting consent from families of brain-dead patients.  This study uses qualitative methods to better understand Thais’ unwillingness to donate organs and whether it is possible and appropriate for transplant professionals to change their minds.  The major research question is: What themes arise as transplant professionals discuss their perception of the major barriers to organ donation in Thailand?

Methods

This qualitative research case study investigates the barriers to organ donation in Thailand.  I conducted a series of semi-structured interviews with mid- to late-career neurologists, transplant surgeons, anesthesiologists, nurse anesthetists, and intensive care doctors and nurses.  Twelve of these participants were employed at public hospitals and six at private hospitals in Bangkok.  This non-randomized sample size was limited to eighteen to ensure adequate time to conduct thorough, thoughtful interviews with each participant.  Individuals from these medical specialties were selected for their presumed experience in treating potential and actual organ donors and recipients. 

Stanford University’s Institutional Review Board approved the study.  Participants were recruited by the snowball method of referral and interviews were conducted in English.  To maintain the consistency of the interviews across the participants, semi-structured interviews were conducted with the same core set of open-ended questions posed to every participant.¹²

These interviews were audio-recorded, transcribed verbatim, and coded in multiple passes in the grounded theory approach to qualitative research.  An organized coding chart was constructed to increase intra-rater reliability in the consistent definition and application of codes.

Coded interview data were triangulated with secondary data types—statistical reports of organ donation rates, field notes, as well as comparison of the participants’ perceptions of the laws regulating organ donation with actual policy.  Because this study was limited to Bangkok, Thailand’s major urban center, the conclusions from this research may not be generalizable to all Thais.

Findings

In order to understand the question, “What themes arise when transplant professionals discuss their perception of the major barriers to organ donation in Thailand?” I first needed to understand the process of transferring organs from donors to recipients.  As shown in Figure 2, the process begins when the ICU physicians, nurses, and neurosurgeons identify the brain-dead patient as a potential donor.  Then, they provide medical support to preserve the brain-dead patient’s organs, while providing emotional support to the patient’s family.  All the time, the physicians must care for the other, non-brain-dead patients on the ward.  If the family gives consent to the physicians, the physicians will notify the Organ Donation Center (ODC) of the potential donor.  The ODC dispatches the transplant coordinator, who notifies the Neuro team (typically a neurologist, a neurosurgeon, and the director of the hospital) to declare the patient as brain dead.  If the transplant coordinator determines that the patient is medically eligible to be an organ donor, then the ODC activates the procurement team to recover organs from the patient.  The ODC identifies potential recipients at various transplant hospitals and allocates organs to their medical caregivers.  The ODC also activates the transplantation surgical team to perform the transplantations.

Figure 2. The Transfer of Organs from Donor to Recipients.

Natural demarcation of death vs. Artificial definition of death

The twin concepts of brain death as the natural demarcation of death and brain death as an artificial definition of death illuminate the tension many participants feel about the ethics of organ transplantation.  Only a minority of the participants expressed firm belief that brain death is equivalent to death of the whole person, suggesting a bias toward the latter end of this continuum.  The belief that brain-dead patients are still alive implies that the act of organ procurement is the ultimate cause of death of the donor-patients.  This violation of the dead donor rule undermines the ethical basis of organ transplantation.

External incentives vs. Internal motivation

The second thematic pair contrasts physicians’ internal motivation to facilitate organ donation with external incentives for and against doing so.  Internal motivation is significant for those who believe in the Buddhist notion of tham bun (making merit, or improving one’s karma) by way of organ donation, or recognize the power of transplantation to improve the health of transplant recipients.  But, internal motivation may not offset the lack of external incentives for facilitating donation, nor overcome the legal and institutional structures that discourage such facilitation.

In the absence of institutionalized protocols encouraging facilitation of organ donation, physicians must assume extraordinary risk if they choose to take on those tasks.  They only have their personal judgment to guide them through emotionally-heavy and morally-complex predicaments, such as requesting consent from family members whose loved one has just died.  Participant 25, an anesthesiologist at a public hospital said, “If they are crying a lot, then I don’t think it’s a good time, but there’s no protocol on that.  One has to use one’s decision when to approach.”  In using “one’s decision when to approach,” participants report allowing all kinds of medically-irrelevant factors to determine whether or not they carry out the duties necessary to organ donation.

Overburdened ICU physicians vs. Under-utilized transplant coordinators

Rather than giving credence to religious objections to organ donation as a major cause of Thailand’s organ shortage, the interview participants pointed to the existence of a “bottleneck” between overburdened ICU physicians and under-utilized transplant coordinators.  The bottleneck manifests itself when ICU physicians are aware that a patient is brain dead, but neglects to notify the procurement agency.  Participant 21, a nurse-transplant coordinator in a public hospital, depends on that notification in order to start her duty, “Because if the staff don’t tell the coordinator about the brain dead patient we don’t start to ask for the consent from the family.”  The donation process comes to a halt.

Discussion

Studying the organ donation in terms of three spectra of themes offers a more comprehensive understanding of medical professionals’ roles in facilitating transplantation.  This allows for the design of more meaningful solutions to Thailand’s organ shortage.  One example of the potential for policy and education to reframe barriers to favor organ donation is by shifting the perceived burden of transplantation tasks from ICU physicians to transplant coordinators.  Currently, transplant coordinators are under-utilized in the donation process because physicians are unwilling to discharge their brain-dead patients to an agency whose primary purpose is to procure their organs.  In a way, it constitutes betrayal.  Implicit in that sense of betrayal is the physicians’ lack of confidence in the ethicality of transplantation due to the notion that the procurement of the organs is the ultimate cause of the death of the brain-dead patient.  Changing physicians’ perceptions of the brain death definition of death as a natural and ethical basis for transplantation will encourage physicians to carry out transplantation duties without accompanying feelings of guilt and burden. 

Conclusion

Recall the case from the Bangkok Post’s “Gift of Life” article introduced at the beginning of this article.¹ The mother ultimately decided to donate her daughter’s heart, kidneys, liver, and lungs to the national procurement agency.  She was informed that the organs would be immediately distributed to hospitals where patients were awaiting organ transplants.  One life lost; four saved.  The mother told the Bangkok Post, “I’m happy that I made the right decision.  It was my daughter’s greatest merit—not only to save other people’s lives, but also to spare their families from grief.”¹ She said that she has no regrets donating her daughter’s organs.  In a way, knowing that her daughter’s organs are still alive in the bodies of others makes her feel that her daughter is still present.  “For me, she is still alive.  But she has simply transformed herself into other bodies.  With that knowledge, I’ve not really lost her,” she said.¹ Nobody asked the mother to eliminate her belief in reincarnation.  The mother was able to reframe her belief in reincarnation in a way that is consistent with her value system and favors organ donation.

References
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