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The Path Not Taken: Social and Cultural Barriers to Thoracic Transplantation
Clin Chest Med 27 (2006) 503–509
The Path Not Taken: Social and Cultural Barriers to Thoracic Transplantation Glenda M. Patterson, MD Pulmonary Service, Department of Medicine, VA Medical Center, 1100 North College Avenue, Fayetteville, AK 72703, USA
Solid organ transplantation operations are performed worldwide. Over the past 40 years solid organ transplantation has moved from an experimental process to the standard of care for selected patients with terminal solid organ failure. Refinement and advances in organ preservation, surgical techniques, and immunosuppressive therapies have led to improved survival and quality of life for transplant recipients [1]. Acceptance of solid organ transplantation has led to increasing demand for donor organs; however, there has not been a concurrent increase in the donor pool. In November 2005, 90,000 patients in the United States alone were listed as candidates for solid organ transplantation by the United Network for Organ Sharing [2]. Fifty percent (45,629) of these individuals are from recognized minority groups (African American, Hispanic, American Indian, Alaska Native, Asian and Pacific Islander). Data from the renal transplant literature reveals African Americans are less likely to obtain a transplant from a deceased donor [3] and African American candidates are disadvantaged by a predilection for ABO blood types associated with longer waiting periods preceding donation [4]. Of the 6462 patients awaiting thoracic transplantation (heart, 3043; lung, 3268; heart-lung, 151), 1450 are minorities [2]. By August 2005, 18,995 patients had undergone solid organ transplantation with organs obtained from 9796 living or deceased donors. A total of 6931 solid organ transplant procedures were performed on minorities. A total of
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3066 minority donors, living or deceased, provided organs for transplantation [2]. Despite efforts by organ procurement organizations and local community activists to increase public awareness of solid organ transplantation and donation, the availability of solid organs for transplantation continues to fall extremely short of the numbers needed to accommodate the waiting list of candidates. A shortage of solid organ donors is seen worldwide. In the United States, minorities have not donated organs for transplantation at the rate of whites [5–7]. Why do minority groups donate less frequently? Do the families view the request for organ donation as a lack of sensitivity regarding their loss? African American families are less likely to have discussed organ donation and lacking knowledge of the deceased preferences in regards to organ donation, are family members uncomfortable in responding positively to organ donation requests? In the United States, organ donation is based on altruism. African Americans across all socioeconomic levels are more likely to volunteer or give to charities than persons of other ethnic groups [8]. An attitudinal study of African Americans’ reluctance to donate revealed that whites and African Americans held similar beliefs about the importance of organ donation. A total of 53.6% of African Americans and 46.5% of whites believed that ‘‘transplantation is one of the most important things the health care system does.’’ A total of 58.1% of African Americans and 59.8% of whites believed that organ donation helped in the grief process [9]. African Americans and Hispanics (Mexican Americans, Puerto Ricans, and Cubans) comprise the larger groups of United States minorities.
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Much of the data regarding solid organ donation in minorities has been derived from African Americans. During the 1980s low donation rates by African Americans was believed to be caused by lack of awareness of solid organ transplantation (specifically kidney) and of the shortage of organ donors. Community education efforts by Dr. Clive Callender at Howard University in Washington, DC, and such groups as the Delaware Valley Transplant Program, the Mid-America Transplant Program, and the development of the National Minority Organ/Tissue Transplant Education Program increased awareness of solid organ transplantation and organ donation rates [10–13]. The number of black donors in Washington increased from 12 in 1980 to 26 in 1994 (125% increase) and the donor consent rate increased from 10% in 1978 to 46% in 1994 (P !.001) [12]. Organ donation rates by minorities have remained significantly lower, however, than those of whites. Reitz and Callender [14] cited several factors that influence organ donation by African Americans: religious beliefs, misperceptions, distrust of the medical system, and lack of appropriate organ procurement specialists.
Religious beliefs Religious beliefs as barriers to donation and transplantation are present in all minority populations [14–18,20,21]. Although the main branches of Christianity, Catholicism and Protestantism, support and encourage organ donation [15], an individual may not be aware donation is allowed by his or her religion, or that individual’s fear and anxiety may be cloaked in religious reasons. Within the Protestant faiths the larger religious bodies (Episcopal, Lutheran, Presbyterian, United Methodist, Baptist, and Seventh Day Adventist) have spoken favorably regarding organ donation [15]. Other groups (Assembly of God, Mennonites, Mormons, and Pentecostals) have no official policy, and leave the decision to the individual. Pope John Paul II repeatedly advocated donation and transplantation of organs, and the National Conference of Catholic Bishops has affirmed organ donation as permissible [15]. African American clergy members actively participate in community-based educational activities to improve awareness and increase donor rates of African Americans [11]. Although there are no standard teachings in predominantly African American religions prohibiting
organ donation or transplantation, there are beliefs held by African Americans that hinder organ donation. Such beliefs as needing organs to transport the soul after death and the need for an intact body in the afterlife are frequently stated as religious reasons for not signing a donor card [14]. Hispanic populations are predominantly Catholic. Catholicism favors organ donation or transplantation. There is a segment of the Hispanic population (20%) that share African and New World Indian beliefs that there are people with special powers who can communicate with the dead. These individuals share a strong belief in the afterlife. Beliefs held include that the dead are sacred and should not be molested in any fashion [16]. Organ donation or transplantation is viewed as violation of the body, despite organ removal being a surgical procedure. Asian Asian cultures follow several religious philosophies: Hinduism, Buddhism, Shinto, Sikhism, and the Chinese traditions of Confucianism and Taoism. Followers of Confucianism in Chinese culture resist organ donation because of the desire to keep the body intact [17]. The body is viewed as a gift, an inheritance from parents and ancestors, not to be damaged or put at risk. The Taoists have no interest in the body as corpse and do not seem to object to organ donation or transplantation [15]. Buddhism and Shintoism predominate in Japanese culture. Resistance to organ donation has been expressed by both Buddhist and Shinto leaders [15]. Traditional Shinto views of ancestor worship in which the welfare of the living is dependent on proper homage to the dead is at odds with harvesting and dispersal of an individual’s body parts. The concept of the ‘‘freshly dead’’ where the deceased soul wanders between the world of the living and that of the ancestors until a series of rituals are completed to make that individual one of the ‘‘truly dead’’ does not allow timely harvesting of organs for transplantation [18]. Buddhism in contrast is more concerned with what becomes of the soul of the deceased. Reincarnation (continual rebirth) rather than resurrection is the dominant belief held by Buddhists [15]. The Shinto traditions honoring the freshly dead are not followed as closely in modern Japan; however, in recent years there has been a ban on heart transplants as a result of fear that those
SOCIAL-CULTURAL BARRIERS TO THORACIC TRANSPLANTATION
donating their hearts will be unable to live in the future [18]. Acceptance of brain death as death is an integral part of the success of a transplant program. Using traditional cardiovascular indicators of death reduces the availability of healthy organs. Lack of consensus of public opinion on brain death has limited performance of solid organ transplant procedures in Japan. An opinion poll in 1984 revealed 40% of the Japanese population strongly opposed recognizing brain death as the definition of death [18]. Not until October 1997 was the Organ Transplant Law enacted in Japan leading to the first official solid organ transplant procedures in February 1999 [19]. Judaism Organ donation or transplantation raises many questions in Jewish doctrine. The issues of concern are desecration of the body after death, deriving benefit from a corpse, and according the deceased a full burial. Organ donation or transplantation compromises all of these concerns. A basic tenet of Judaism is the supreme value of human life, saving a life takes precedence over all other laws including the prohibition from desecrating bodies and delaying burial. Organ transplantation prolongs life. Conservative and Reform branches of Judaism encourage donation [15,20]. Islam The Quran and the Sunnah (sayings and actions of the Prophet Muhammad) do not specifically address organ donation or transplantation [21]. Muslim jurists for and against donation or transplantation are able to cite verses to support their position. Muslim jurists opposed to donation or transplantation emphasize Islamic belief that human life and the human body are trusts from God and as such should not be altered in anyway, including removing or replacing one’s organs. The human body is a trust and gift from God, not the property of human beings, and one cannot donate what one does not own. Removal of the body parts from a dead or dying person violates the dignity of human life and the human body. Additionally, human life cannot be used as a means to an end, and there cannot be any altering of God’s creation [21]. There are significantly more Muslim scholars in favor of organ donation or transplantation than opposed. These scholars focus on the spirit
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of the law rather than the literal interpretation. They affirm Islamic belief that God’s laws are for the betterment of human society. Organ donation or transplantation should be condoned because it benefits rather than hinders the well-being of human life. Scholars cite concern for public welfare, a sense of altruism, and a belief that human life is a sacred trust [21]. Conditions under which organ donation or transplantation is allowed under Islam include the following: transplantation is the only avenue for treatment, the expected degree of success is relatively high, consent of the owner of the organ or their heirs has been obtained, death is fully established by Muslim doctors of upright character, and the recipient has been informed of the operation and its implication [21].
Myths, misperceptions, and distrust in the medical system Awareness of solid organ transplantation and the organ donor shortage has improved over the years, but little is known by the public of events surrounding the actual donor process, brain death versus cardiopulmonary death. Several common misperceptions held by African Americans include identification as an organ donor results in a decrease in medical care or possibly premature death and removal of organs occurs before death. There are also fears in the African American community regarding mutilation and the inability to have an open casket funeral. This fear has also been expressed by Hispanic populations [22]. A profound distrust of the medical system plays a major role in African Americans’ unwillingness to become organ donors. A survey of white and African American respondents revealed 37.9% of African Americans versus 21.2% of white respondents believed physicians were less likely to save their lives if they were known to be organ donors. That survey also reported that 40% of African Americans versus 30.7% of whites characterized the system of organ distribution as unfair [9]. African Americans have been unwilling subjects in medical or surgical experimentation since the antebellum period. Unfortunately, this behavior extended into more contemporary times with the publication of the Tuskegee syphilis study [23]. Health care disparities continue to exist for minority populations in the United States. Minority populations (African American, Hispanic, Asian, Pacific Islander, American Indian, and Alaska
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Native) experience worse access to health care including lower quality of preventive, primary, and specialty care [24]. There is a perception in African American communities that organ donation only benefits whites [14]. This belief does not engender willingness to become an organ donor. Unlike living organ donation, organs obtained from deceased organ donors are not directed to a specific recipient; a guarantee that an African American candidate is the organ recipient cannot be made. A survey of African American teenagers and adults revealed a reluctance to accept assurances by mainstream medical professionals regarding organ donation or transplantation. The survey respondents indicated that they would feel more confident if the information was presented by African Americans [25]. Poor access to basic health care services also drastically limits the opportunity of solid organ transplantation should the need arise.
Lack of appropriate organ procurement specialists Community-based donor education projects using ethnically appropriate transplant recipients, transplant candidates, donor families, and transplant personnel increased public awareness of organ donation and increased the number of donor cards signed [26]. The hiring of African Americans as the Organ Procurement Coordinator and the Director of Community Education by a North Texas organ procurement organization resulted in an increase in African American consent rates and organ donations [27]. Before implementation of this targeted program, suitable donor referrals averaged 8%; this increased to 15.3% after implementation. Consent rates rose from 0% to 60% in the first year, and to 80% the second year. African American donors represented only 1% of donors before the targeted program and 14% following implementation of ethnically appropriate outreach [27]. Health care professionals culturally attuned to the concerns of minorities can be a bridge to more effective communication of new concepts in disease prevention and a major step in easing feelings of mistrust of mainstream medical systems.
Subconscious bias Lower donor rates for African Americans and other minorities have spurred a 20-year campaign to increase awareness of solid organ
transplantation and the shortage of organs for donation. Donor rates continue to lag in minorities when compared with whites. Prottas proposed the possibility that donor rates were low because hospital staff did not refer all potential donors [28]. A retrospective chart review by Hartwig and coworkers [28] of 152 (44% African American, 56% white) patients meeting criteria for organ donation showed that after controlling for cause of death, the risk that an African American is not requested for organ donation is 2.45 times greater than for whites. Medical staff were less likely to request organ donation from African Americans. The failure to make this request may be caused by failure to identify African Americans as potential donors. A comparison of families’ experience regarding donation requests revealed health care providers afforded African American families less opportunity than white families to consider donation. African American families were more likely than white families not to have spoken with an organ procurement organizations’ representative. White families were more likely than African American families to be perceived by health care providers as willing to donate. When identified as favorable toward donation by health care providers, African American families reported discussing fewer donation-related issues than whites [29]. Guadagnoli and coworkers [30] published a retrospective chart review of families of prospective donors approached by hospital staff. White families were approached more often than African American families (79% versus 67%). The odds that a white family was approached were nearly twice that for an African American family. Among families approached, African Americans were less likely to agree to donate an organ. The health care provider’s initial perception of the family’s attitude toward organ donation is most likely associated with subsequent discussions [29]. Families perceived to be more receptive may be more likely to be engaged in a detailed discussion of organ donation issues. African American respondents were more likely to report they were not willing to be an organ donor and were less likely to have signed an organ donor card. A survey of the views of nephrologists regarding survival and quality of life with transplantation versus dialysis revealed physicians were less likely to believe transplantation prolongs survival relative to dialysis for African American than for white patients [31]. Also, physicians viewed patients’ preferences and availability of
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living donors as the most important reasons why African American patients are less likely than white patients to be evaluated for renal transplantation. This view is counter to a survey of patients that found only small differences in preferences for renal transplantation between African American and white patients [31]. Critical care staff may play a significant role in organ donor shortages. Critical care personnel have the responsibility for caring for patients whose condition ultimately progresses to brain death. Training of hospital staff about organ donation protocols is associated with superior rates of organ donation. A survey of 1061 critical care staff from 28 hospitals who had been involved in a potential organ donation procurement event in the 6 months before the survey revealed staff at hospitals with high donation rates were more likely to report having received training in how to request organ donation, how to explain brain death to the family, and how to decouple the explanation of brain death from the request for organ donation than respondents at hospitals with low donation rates [32]. Training is associated with higher comfort levels with the donation process and with higher levels of support for organ donation. Personal concerns of critical care staff regarding donation and transplantation factor into their ability to make requests for organ donation. A study of 756 nonphysician health care professionals revealed that 35% believed requesting donation places the bereaved family under unfair strain. A total of 43% believed solicitation of organs could be offensive to the family of the donor. A total of 31% were concerned that requesting could expose the hospital to litigation. This lack of comfort with the process of organ donation becomes greater in cases of violent death or in response to unfamiliar cultural expressions of grief. Unfamiliarity with ethnic expressions of grief is a factor in health care providers’ reluctance to approach African American families for organ donation [28]. Overall satisfaction with hospital care has not correlated with the donation decision, but socioemotional and communication issues are important. Families who perceived that one or more health care providers involved in their relatives care were not concerned or caring were less likely to donate (56.6% versus 43.4%). Families who were surprised by the request for organ donation were less likely to donate than families who were not surprised [33].
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Acculturation Hispanic and Asian populations in the United States are increasing. Hispanic Americans are predominantly composed of members of three groups: Mexican Americans, Puerto Ricans, and Cubans. Increases in these populations in the United States will lead to an increase in the numbers of Hispanic and Asian patients becoming transplant candidates and an increasing need for ethnic donors. Community education efforts regarding solid organ donation and transplantation must now include these groups. Effective communication is crucial to improving awareness of organ donation and transplantation and increasing donor rates. English may not be the primary language for Hispanic or Asian patients. Breaching this language barrier is key to effecting change in attitudes regarding donation or transplantation. Recognizing the role of the extended family is also important. It is not uncommon for Hispanic families living in the United States to seek input on donation decisions from family members in their native land before providing consent for the procedure [16]. Hispanic populations have expressed concerns similar to African Americans regarding fear of organ removal before death, disfigurement preventing an open casket funeral, and a belief that only wealthy people receive organ transplants. Fear of a ‘‘black market’’ in recovered organs seems more prominent in Mexican American populations, but may be related more to the degree of understanding of American culture. Open discussions of death are uncommon in Asian and Hispanic cultures (African Americans are also less likely to have discussed organ donation with family members compared with whites, which suggests a similar cultural pattern) resulting in a significant obstacle to increasing consent rates [9,17,34].
Summary Awareness of solid organ transplantation and the shortage of solid organ donors has increased. Rates of organ donation remain lower in minority populations compared with whites. Social and cultural beliefs are significant barriers to consent for solid organ donation. Community-based education provided by ethnically appropriate health care providers and donation requests from ethnically appropriate organ procurement coordinators improve consent rates. Training of hospital or
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critical care staff in donation protocols remains suboptimal. Increasing health care providers’ awareness of subconscious bias when approaching minority populations and a better understanding of cultural differences in expression of grief may increase donor consent rates. Increased awareness of solid organ donation or transplantation has not been enough to increase organ donation among minority populations. Limited access to basic health care services, distrust of the medical system, poor understanding of how common medical illnesses lead to organ dysfunction, and the subsequent need for organ transplantation are issues that if effectively addressed may have more impact on donor consent rates.
[10]
[11]
[12]
[13]
[14]
Acknowledgment
[15]
The author thanks Linton Swenson, Fayetteville VA Library Services, and Lorraine Sitler, MSLS, United Network for Organ Sharing, for invaluable research assistance; and Pat Gamberg, RN, Transplant Coordinator, for moral and editing support.
[16]
References [1] Baumgartner W, Reitz B, Kasper E, et al. Heart and lung transplantation. 2nd edition. Philadelphia: WB Saunders; 2002. [2] United Network for Organ Sharing (UNOS). Waiting list. Available at http://www.unos.org. Accessed November 20, 2005. [3] Epstein A, Ayanian J, Keogh J, et al. Racial disparities in access to renal transplantation- clinically appropriate or due to underuse or overuse? N Engl J Med 2000;343:1537–44. [4] Young C, Kew C. Health disparities in transplantation: focus on the complexity and challenge of renal transplantation in African Americans. Med Clin North Am 2005;89:1003–31. [5] Callender C. Organ donation in blacks: a community approach. Transplant Proc 1987;19:1551–4. [6] Durand R, Decker P, Bruder P. Organ donation among African Americans: opportunities for increasing donor rates. Hospital topics: Research and Perspectives on Health Care 2002;80:34–7. [7] Roberts K. Black American attitudes toward organ donation and transplantation. J Natl Med Assoc 1988;80:1121–6. [8] Siminoff LA, Arnold R. Increasing organ donation in the African-American community: altruism in the face of an untrustworthy system. Ann Intern Med 1999;130:607–9. [9] Siminoff LA, Saunders Sturm CM. African-American reluctance to donate: beliefs and attitudes about
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organ donation and implications for policy. Kennedy Inst Ethics J 2000;10:59–74. Callender C, Hall L, Yeager C, et al. Organ donation in blacks: a critical frontier. N Engl J Med 1991;325: 442–4. Yang S, Abrams J, Smolinski S, et al. Organ donation and referrals among African Americans. Transplant Proc 1993;25:2488–9. Kappel D, Whitlock M, Parks-Thomas T, et al. Increasing African-American organ donation: the St. Louis experience. Transplant Proc 1993;25: 2489–90. Callender C, Burston B, Yeager C, et al. A national minority transplant program for increasing donation rates. Transplant Proc 1997;29:1482–3. Reitz N, Callender C. Organ donation in the African-American population: a fresh perspective with a simple solution. J Natl Med Assoc 1993;85:353–8. Gillman J. Religious perspectives on organ donation. Crit Care Nurs Q 1999;22:19–29. Perez L, Schulman B, Davis F, et al. Organ donation in three major American cities with large Latino and black populations. Transplantation 1988;46:553–7. Braun K, Nichols R. Death and dying in four Asian American cultures: a descriptive study. Death Studies 1997;21:327–59. Feldman E. Defining death: organ transplants, tradition and technology in Japan. Soc Sci Med 1988; 27:339–43. Watts J. Japan does its first official heart and liver transplantations. Lancet 1999;351:821. Bulka R. Jewish perspective on organ transplantation. Transplant Proc 1990;22:945–6. Aasi G-H. Islamic legal and ethical views on organ transplantation and donation. Zygon 2003;38: 725–34. Rene A, Viera E, Daniels D, et al. Organ donation in the Hispanic population: Donde estan ellos? J Natl Med Assoc 1994;86:13–6. Gamble V. Under the shadow of Tuskegee: AfricanAmericans and health care. Am J Public Health 1997;87:1773–9. Race and ethnic minorities. National healthcare disparities report. Washington: United States Department of Health and Human Services; 2004. Thompson V. Educating the African-American community on organ donation. J Natl Med Assoc 1993;85:17–9. Hong B, Kappel D, Whitlock M. Using race specific community programs to increase organ donation among blacks: notes from the field. Am J Public Health 1994;84:314–5. Gentry D, Brown-Huber J, Andrews C. Racial impact: Increasing minority consent rates by altering the racial mix of an organ procurement organization. Transplant Proc 1997;29:3758–9. Hartwig M, Hall G, Hathaway D, et al. Effect of organ donor race on health team procurement efforts. Arch Surg 1993;128:1331–5.
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[29] Siminoff LA, Lawrence R, Arnold R. Comparison of black and white families’ experience and perceptions regarding organ donation requests. Crit Care Med 2003;31:146–51. [30] Guadagnoli E, McNamara P, Evanisko M, et al. The influence of race on approaching families for organ donation and their decision to donate. Am J Public Health 1999;89:244–7. [31] Ayanian J, Cleary P, Keogh J, et al. Physicians’ beliefs about racial differences in referral for
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renal transplantation. Am J Kidney Dis 2004;43: 350–7. [32] Evanisko M, Beasley C, Brigham L, et al. Readiness of critical care physicians and nurses to handle requests for organ donation. Am J Crit Care 1998;7:4–12. [33] Siminoff LA, Gordon M, Hewlett J, et al. Factors influencing families’ consent for donation of solid organs for transplantation. JAMA 2001;286:71–7. [34] Stone S. Increasing donation among Hispanics. UNOS Update 2005;5:26–7.
The Path Not Taken: Social and Cultural Barriers to Thoracic Transplantation Glenda M. Patterson, MD Pulmonary Service, Department of Medicine, VA Medical Center, 1100 North College Avenue, Fayetteville, AK 72703, USA
Solid organ transplantation operations are performed worldwide. Over the past 40 years solid organ transplantation has moved from an experimental process to the standard of care for selected patients with terminal solid organ failure. Refinement and advances in organ preservation, surgical techniques, and immunosuppressive therapies have led to improved survival and quality of life for transplant recipients [1]. Acceptance of solid organ transplantation has led to increasing demand for donor organs; however, there has not been a concurrent increase in the donor pool. In November 2005, 90,000 patients in the United States alone were listed as candidates for solid organ transplantation by the United Network for Organ Sharing [2]. Fifty percent (45,629) of these individuals are from recognized minority groups (African American, Hispanic, American Indian, Alaska Native, Asian and Pacific Islander). Data from the renal transplant literature reveals African Americans are less likely to obtain a transplant from a deceased donor [3] and African American candidates are disadvantaged by a predilection for ABO blood types associated with longer waiting periods preceding donation [4]. Of the 6462 patients awaiting thoracic transplantation (heart, 3043; lung, 3268; heart-lung, 151), 1450 are minorities [2]. By August 2005, 18,995 patients had undergone solid organ transplantation with organs obtained from 9796 living or deceased donors. A total of 6931 solid organ transplant procedures were performed on minorities. A total of
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3066 minority donors, living or deceased, provided organs for transplantation [2]. Despite efforts by organ procurement organizations and local community activists to increase public awareness of solid organ transplantation and donation, the availability of solid organs for transplantation continues to fall extremely short of the numbers needed to accommodate the waiting list of candidates. A shortage of solid organ donors is seen worldwide. In the United States, minorities have not donated organs for transplantation at the rate of whites [5–7]. Why do minority groups donate less frequently? Do the families view the request for organ donation as a lack of sensitivity regarding their loss? African American families are less likely to have discussed organ donation and lacking knowledge of the deceased preferences in regards to organ donation, are family members uncomfortable in responding positively to organ donation requests? In the United States, organ donation is based on altruism. African Americans across all socioeconomic levels are more likely to volunteer or give to charities than persons of other ethnic groups [8]. An attitudinal study of African Americans’ reluctance to donate revealed that whites and African Americans held similar beliefs about the importance of organ donation. A total of 53.6% of African Americans and 46.5% of whites believed that ‘‘transplantation is one of the most important things the health care system does.’’ A total of 58.1% of African Americans and 59.8% of whites believed that organ donation helped in the grief process [9]. African Americans and Hispanics (Mexican Americans, Puerto Ricans, and Cubans) comprise the larger groups of United States minorities.
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Much of the data regarding solid organ donation in minorities has been derived from African Americans. During the 1980s low donation rates by African Americans was believed to be caused by lack of awareness of solid organ transplantation (specifically kidney) and of the shortage of organ donors. Community education efforts by Dr. Clive Callender at Howard University in Washington, DC, and such groups as the Delaware Valley Transplant Program, the Mid-America Transplant Program, and the development of the National Minority Organ/Tissue Transplant Education Program increased awareness of solid organ transplantation and organ donation rates [10–13]. The number of black donors in Washington increased from 12 in 1980 to 26 in 1994 (125% increase) and the donor consent rate increased from 10% in 1978 to 46% in 1994 (P !.001) [12]. Organ donation rates by minorities have remained significantly lower, however, than those of whites. Reitz and Callender [14] cited several factors that influence organ donation by African Americans: religious beliefs, misperceptions, distrust of the medical system, and lack of appropriate organ procurement specialists.
Religious beliefs Religious beliefs as barriers to donation and transplantation are present in all minority populations [14–18,20,21]. Although the main branches of Christianity, Catholicism and Protestantism, support and encourage organ donation [15], an individual may not be aware donation is allowed by his or her religion, or that individual’s fear and anxiety may be cloaked in religious reasons. Within the Protestant faiths the larger religious bodies (Episcopal, Lutheran, Presbyterian, United Methodist, Baptist, and Seventh Day Adventist) have spoken favorably regarding organ donation [15]. Other groups (Assembly of God, Mennonites, Mormons, and Pentecostals) have no official policy, and leave the decision to the individual. Pope John Paul II repeatedly advocated donation and transplantation of organs, and the National Conference of Catholic Bishops has affirmed organ donation as permissible [15]. African American clergy members actively participate in community-based educational activities to improve awareness and increase donor rates of African Americans [11]. Although there are no standard teachings in predominantly African American religions prohibiting
organ donation or transplantation, there are beliefs held by African Americans that hinder organ donation. Such beliefs as needing organs to transport the soul after death and the need for an intact body in the afterlife are frequently stated as religious reasons for not signing a donor card [14]. Hispanic populations are predominantly Catholic. Catholicism favors organ donation or transplantation. There is a segment of the Hispanic population (20%) that share African and New World Indian beliefs that there are people with special powers who can communicate with the dead. These individuals share a strong belief in the afterlife. Beliefs held include that the dead are sacred and should not be molested in any fashion [16]. Organ donation or transplantation is viewed as violation of the body, despite organ removal being a surgical procedure. Asian Asian cultures follow several religious philosophies: Hinduism, Buddhism, Shinto, Sikhism, and the Chinese traditions of Confucianism and Taoism. Followers of Confucianism in Chinese culture resist organ donation because of the desire to keep the body intact [17]. The body is viewed as a gift, an inheritance from parents and ancestors, not to be damaged or put at risk. The Taoists have no interest in the body as corpse and do not seem to object to organ donation or transplantation [15]. Buddhism and Shintoism predominate in Japanese culture. Resistance to organ donation has been expressed by both Buddhist and Shinto leaders [15]. Traditional Shinto views of ancestor worship in which the welfare of the living is dependent on proper homage to the dead is at odds with harvesting and dispersal of an individual’s body parts. The concept of the ‘‘freshly dead’’ where the deceased soul wanders between the world of the living and that of the ancestors until a series of rituals are completed to make that individual one of the ‘‘truly dead’’ does not allow timely harvesting of organs for transplantation [18]. Buddhism in contrast is more concerned with what becomes of the soul of the deceased. Reincarnation (continual rebirth) rather than resurrection is the dominant belief held by Buddhists [15]. The Shinto traditions honoring the freshly dead are not followed as closely in modern Japan; however, in recent years there has been a ban on heart transplants as a result of fear that those
SOCIAL-CULTURAL BARRIERS TO THORACIC TRANSPLANTATION
donating their hearts will be unable to live in the future [18]. Acceptance of brain death as death is an integral part of the success of a transplant program. Using traditional cardiovascular indicators of death reduces the availability of healthy organs. Lack of consensus of public opinion on brain death has limited performance of solid organ transplant procedures in Japan. An opinion poll in 1984 revealed 40% of the Japanese population strongly opposed recognizing brain death as the definition of death [18]. Not until October 1997 was the Organ Transplant Law enacted in Japan leading to the first official solid organ transplant procedures in February 1999 [19]. Judaism Organ donation or transplantation raises many questions in Jewish doctrine. The issues of concern are desecration of the body after death, deriving benefit from a corpse, and according the deceased a full burial. Organ donation or transplantation compromises all of these concerns. A basic tenet of Judaism is the supreme value of human life, saving a life takes precedence over all other laws including the prohibition from desecrating bodies and delaying burial. Organ transplantation prolongs life. Conservative and Reform branches of Judaism encourage donation [15,20]. Islam The Quran and the Sunnah (sayings and actions of the Prophet Muhammad) do not specifically address organ donation or transplantation [21]. Muslim jurists for and against donation or transplantation are able to cite verses to support their position. Muslim jurists opposed to donation or transplantation emphasize Islamic belief that human life and the human body are trusts from God and as such should not be altered in anyway, including removing or replacing one’s organs. The human body is a trust and gift from God, not the property of human beings, and one cannot donate what one does not own. Removal of the body parts from a dead or dying person violates the dignity of human life and the human body. Additionally, human life cannot be used as a means to an end, and there cannot be any altering of God’s creation [21]. There are significantly more Muslim scholars in favor of organ donation or transplantation than opposed. These scholars focus on the spirit
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of the law rather than the literal interpretation. They affirm Islamic belief that God’s laws are for the betterment of human society. Organ donation or transplantation should be condoned because it benefits rather than hinders the well-being of human life. Scholars cite concern for public welfare, a sense of altruism, and a belief that human life is a sacred trust [21]. Conditions under which organ donation or transplantation is allowed under Islam include the following: transplantation is the only avenue for treatment, the expected degree of success is relatively high, consent of the owner of the organ or their heirs has been obtained, death is fully established by Muslim doctors of upright character, and the recipient has been informed of the operation and its implication [21].
Myths, misperceptions, and distrust in the medical system Awareness of solid organ transplantation and the organ donor shortage has improved over the years, but little is known by the public of events surrounding the actual donor process, brain death versus cardiopulmonary death. Several common misperceptions held by African Americans include identification as an organ donor results in a decrease in medical care or possibly premature death and removal of organs occurs before death. There are also fears in the African American community regarding mutilation and the inability to have an open casket funeral. This fear has also been expressed by Hispanic populations [22]. A profound distrust of the medical system plays a major role in African Americans’ unwillingness to become organ donors. A survey of white and African American respondents revealed 37.9% of African Americans versus 21.2% of white respondents believed physicians were less likely to save their lives if they were known to be organ donors. That survey also reported that 40% of African Americans versus 30.7% of whites characterized the system of organ distribution as unfair [9]. African Americans have been unwilling subjects in medical or surgical experimentation since the antebellum period. Unfortunately, this behavior extended into more contemporary times with the publication of the Tuskegee syphilis study [23]. Health care disparities continue to exist for minority populations in the United States. Minority populations (African American, Hispanic, Asian, Pacific Islander, American Indian, and Alaska
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Native) experience worse access to health care including lower quality of preventive, primary, and specialty care [24]. There is a perception in African American communities that organ donation only benefits whites [14]. This belief does not engender willingness to become an organ donor. Unlike living organ donation, organs obtained from deceased organ donors are not directed to a specific recipient; a guarantee that an African American candidate is the organ recipient cannot be made. A survey of African American teenagers and adults revealed a reluctance to accept assurances by mainstream medical professionals regarding organ donation or transplantation. The survey respondents indicated that they would feel more confident if the information was presented by African Americans [25]. Poor access to basic health care services also drastically limits the opportunity of solid organ transplantation should the need arise.
Lack of appropriate organ procurement specialists Community-based donor education projects using ethnically appropriate transplant recipients, transplant candidates, donor families, and transplant personnel increased public awareness of organ donation and increased the number of donor cards signed [26]. The hiring of African Americans as the Organ Procurement Coordinator and the Director of Community Education by a North Texas organ procurement organization resulted in an increase in African American consent rates and organ donations [27]. Before implementation of this targeted program, suitable donor referrals averaged 8%; this increased to 15.3% after implementation. Consent rates rose from 0% to 60% in the first year, and to 80% the second year. African American donors represented only 1% of donors before the targeted program and 14% following implementation of ethnically appropriate outreach [27]. Health care professionals culturally attuned to the concerns of minorities can be a bridge to more effective communication of new concepts in disease prevention and a major step in easing feelings of mistrust of mainstream medical systems.
Subconscious bias Lower donor rates for African Americans and other minorities have spurred a 20-year campaign to increase awareness of solid organ
transplantation and the shortage of organs for donation. Donor rates continue to lag in minorities when compared with whites. Prottas proposed the possibility that donor rates were low because hospital staff did not refer all potential donors [28]. A retrospective chart review by Hartwig and coworkers [28] of 152 (44% African American, 56% white) patients meeting criteria for organ donation showed that after controlling for cause of death, the risk that an African American is not requested for organ donation is 2.45 times greater than for whites. Medical staff were less likely to request organ donation from African Americans. The failure to make this request may be caused by failure to identify African Americans as potential donors. A comparison of families’ experience regarding donation requests revealed health care providers afforded African American families less opportunity than white families to consider donation. African American families were more likely than white families not to have spoken with an organ procurement organizations’ representative. White families were more likely than African American families to be perceived by health care providers as willing to donate. When identified as favorable toward donation by health care providers, African American families reported discussing fewer donation-related issues than whites [29]. Guadagnoli and coworkers [30] published a retrospective chart review of families of prospective donors approached by hospital staff. White families were approached more often than African American families (79% versus 67%). The odds that a white family was approached were nearly twice that for an African American family. Among families approached, African Americans were less likely to agree to donate an organ. The health care provider’s initial perception of the family’s attitude toward organ donation is most likely associated with subsequent discussions [29]. Families perceived to be more receptive may be more likely to be engaged in a detailed discussion of organ donation issues. African American respondents were more likely to report they were not willing to be an organ donor and were less likely to have signed an organ donor card. A survey of the views of nephrologists regarding survival and quality of life with transplantation versus dialysis revealed physicians were less likely to believe transplantation prolongs survival relative to dialysis for African American than for white patients [31]. Also, physicians viewed patients’ preferences and availability of
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living donors as the most important reasons why African American patients are less likely than white patients to be evaluated for renal transplantation. This view is counter to a survey of patients that found only small differences in preferences for renal transplantation between African American and white patients [31]. Critical care staff may play a significant role in organ donor shortages. Critical care personnel have the responsibility for caring for patients whose condition ultimately progresses to brain death. Training of hospital staff about organ donation protocols is associated with superior rates of organ donation. A survey of 1061 critical care staff from 28 hospitals who had been involved in a potential organ donation procurement event in the 6 months before the survey revealed staff at hospitals with high donation rates were more likely to report having received training in how to request organ donation, how to explain brain death to the family, and how to decouple the explanation of brain death from the request for organ donation than respondents at hospitals with low donation rates [32]. Training is associated with higher comfort levels with the donation process and with higher levels of support for organ donation. Personal concerns of critical care staff regarding donation and transplantation factor into their ability to make requests for organ donation. A study of 756 nonphysician health care professionals revealed that 35% believed requesting donation places the bereaved family under unfair strain. A total of 43% believed solicitation of organs could be offensive to the family of the donor. A total of 31% were concerned that requesting could expose the hospital to litigation. This lack of comfort with the process of organ donation becomes greater in cases of violent death or in response to unfamiliar cultural expressions of grief. Unfamiliarity with ethnic expressions of grief is a factor in health care providers’ reluctance to approach African American families for organ donation [28]. Overall satisfaction with hospital care has not correlated with the donation decision, but socioemotional and communication issues are important. Families who perceived that one or more health care providers involved in their relatives care were not concerned or caring were less likely to donate (56.6% versus 43.4%). Families who were surprised by the request for organ donation were less likely to donate than families who were not surprised [33].
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Acculturation Hispanic and Asian populations in the United States are increasing. Hispanic Americans are predominantly composed of members of three groups: Mexican Americans, Puerto Ricans, and Cubans. Increases in these populations in the United States will lead to an increase in the numbers of Hispanic and Asian patients becoming transplant candidates and an increasing need for ethnic donors. Community education efforts regarding solid organ donation and transplantation must now include these groups. Effective communication is crucial to improving awareness of organ donation and transplantation and increasing donor rates. English may not be the primary language for Hispanic or Asian patients. Breaching this language barrier is key to effecting change in attitudes regarding donation or transplantation. Recognizing the role of the extended family is also important. It is not uncommon for Hispanic families living in the United States to seek input on donation decisions from family members in their native land before providing consent for the procedure [16]. Hispanic populations have expressed concerns similar to African Americans regarding fear of organ removal before death, disfigurement preventing an open casket funeral, and a belief that only wealthy people receive organ transplants. Fear of a ‘‘black market’’ in recovered organs seems more prominent in Mexican American populations, but may be related more to the degree of understanding of American culture. Open discussions of death are uncommon in Asian and Hispanic cultures (African Americans are also less likely to have discussed organ donation with family members compared with whites, which suggests a similar cultural pattern) resulting in a significant obstacle to increasing consent rates [9,17,34].
Summary Awareness of solid organ transplantation and the shortage of solid organ donors has increased. Rates of organ donation remain lower in minority populations compared with whites. Social and cultural beliefs are significant barriers to consent for solid organ donation. Community-based education provided by ethnically appropriate health care providers and donation requests from ethnically appropriate organ procurement coordinators improve consent rates. Training of hospital or
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critical care staff in donation protocols remains suboptimal. Increasing health care providers’ awareness of subconscious bias when approaching minority populations and a better understanding of cultural differences in expression of grief may increase donor consent rates. Increased awareness of solid organ donation or transplantation has not been enough to increase organ donation among minority populations. Limited access to basic health care services, distrust of the medical system, poor understanding of how common medical illnesses lead to organ dysfunction, and the subsequent need for organ transplantation are issues that if effectively addressed may have more impact on donor consent rates.
[10]
[11]
[12]
[13]
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Acknowledgment
[15]
The author thanks Linton Swenson, Fayetteville VA Library Services, and Lorraine Sitler, MSLS, United Network for Organ Sharing, for invaluable research assistance; and Pat Gamberg, RN, Transplant Coordinator, for moral and editing support.
[16]
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