2
Trends and Patterns

Increasing the rate of organ donation is a complex challenge, not only because of the emotional aspects of the decision that individuals and their families face but also because of the organizational and clinical demands of recovery, allocation, and transplantation. This chapter describes the context in which efforts to increase the rates of organ donation must occur. It begins with an overview of the statistics on organ transplantation, including statistics on each type of solid organ that is transplanted—kidney, liver, lung, heart, pancreas, and intestine. The chapter then examines the literature on the determinants of organ donation from the perspectives of both individuals and families. More research is needed to better understand the concerns of individuals and families who are not currently inclined to donate.

Although this report focuses on organ donation, it is important to keep in mind the recipients of transplants and those awaiting transplantation. They are the beneficiaries and potential beneficiaries of organ donation and their health and well-being are the reasons it is so important to increase the rate of organ donation. This chapter provides just a brief overview of some of the issues related to allocation and transplantation of specific organs.

ORGAN DONATION STATISTICS AND TRENDS

The number of organ donors has increased each year since 1988, from 5,902 total donors in 1988 to 14,489 donors in 2005 (OPTN, 20061). The

1

Data are provided from the National Data Reports on the OPTN website (http://www.optn.org). The data used in this chapter are current as of March/April 2006; data on the website are continuously updated. Data are based on the calendar year, unless otherwise indicated in the text.



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Organ Donation: Opportunities for Action 2 Trends and Patterns Increasing the rate of organ donation is a complex challenge, not only because of the emotional aspects of the decision that individuals and their families face but also because of the organizational and clinical demands of recovery, allocation, and transplantation. This chapter describes the context in which efforts to increase the rates of organ donation must occur. It begins with an overview of the statistics on organ transplantation, including statistics on each type of solid organ that is transplanted—kidney, liver, lung, heart, pancreas, and intestine. The chapter then examines the literature on the determinants of organ donation from the perspectives of both individuals and families. More research is needed to better understand the concerns of individuals and families who are not currently inclined to donate. Although this report focuses on organ donation, it is important to keep in mind the recipients of transplants and those awaiting transplantation. They are the beneficiaries and potential beneficiaries of organ donation and their health and well-being are the reasons it is so important to increase the rate of organ donation. This chapter provides just a brief overview of some of the issues related to allocation and transplantation of specific organs. ORGAN DONATION STATISTICS AND TRENDS The number of organ donors has increased each year since 1988, from 5,902 total donors in 1988 to 14,489 donors in 2005 (OPTN, 20061). The 1 Data are provided from the National Data Reports on the OPTN website (http://www.optn.org). The data used in this chapter are current as of March/April 2006; data on the website are continuously updated. Data are based on the calendar year, unless otherwise indicated in the text.

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Organ Donation: Opportunities for Action annual increase in the number of donors over the prior year ranges from 26 additional donors (1988 to 1989) to 1,057 more donors (1999 to 2000) (OPTN, 2006). Furthermore, there has been a steady increase in the number of organs recovered (with an average of approximately 1,100 more organs recovered each year than in the previous year); 2,416 more organs were recovered in 2004 than in 2003,2 the largest recent increase (OPTN, 2006). However, the growth of the waiting list has been much more dramatic, with approximately 5,000 more candidates for transplantation each year than in the prior year (Table 2-1). The net result is a widening gap between the supply of transplantable organs and the number of patients on the waiting list—hence, the increasing need for donated organs (see Figure 1-1 in Chapter 1). The U.S. waiting list for organ transplants, which listed 16,026 individuals in 1988, grew more than fivefold to greater than 90,000 candidates for transplantation in early 2006 (IOM, 1999; OPTN, 2006). The need for kidney transplants is the major driving force in the increase in the waiting list, with individuals waiting for a kidney transplant constituting approximately 72 percent of the transplant waiting list in March 2006 (Table 2-2; Figure 2-1). As discussed in Chapter 1, the waiting list is dynamic and changes throughout the year as new transplant candidates and registrations are added, individuals receiving a transplant are removed, and other changes are made. In 2005, 44,619 transplant candidates were added, and there were 48,922 new registrations (an individual candidate can be registered at multiple centers or for more than one organ) (OPTN, 2006). Organ Donors In 2005, there were 7,593 deceased donors and 6,896 living donors (OPTN, 2006). Although the first transplantation in 1954 involved a kidney from a living donor, most organ transplantations are the result of donations from deceased donors. Deceased donors provide multiple organs (for 2005, a simple calculation based on the number of transplanted organs and the number of deceased donors results in 3.06 transplanted organs per deceased donor); most living donors provide only one partial or complete organ. Of the 30,148 organs transplanted in 2005, 23,249 organs were from deceased donors and 6,899 were from living donors3 (OPTN, 2006). In 2001, the number of living donors exceeded that of deceased donors for the first time (Figure 2-2). Since then the increase in the numbers of dona- 2 These statistics are totals for living and deceased donors. In 2005, 33,731 organs were recovered from living and deceased donors. 3 As discussed below, not all recovered organs are eligible for transplantation.

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Organ Donation: Opportunities for Action TABLE 2-1 OPTN/UNOS Waiting List at the End of Year, 1995 to 2004 Year Number of Waiting List Candidates at the End of the Year Increase in Number from Previous Year 1995 41,575   1996 47,423 5,848 1997 53,413 5,990 1998 59,908 6,495 1999 65,313 5,405 2000 71,694 6,381 2001 76,987 5,293 2002 78,627 1,640 2003 82,259 3,632 2004 86,378 4,119 SOURCE: HRSA and SRTR (2006). TABLE 2-2 OPTN/UNOS Waiting List, Transplant Candidates (March 24, 2006) Organ Number on Waiting List All organs 91,214 Kidney 65,917 Liver 17,249 Pancreas 1,748 Kidney and pancreas 2,505 Heart 3,008 Lung 3,092 Heart and lung 149 Intestine 191 SOURCE: OPTN (2006). tions from living donors (living donations) has leveled off, and in 2004 and 2005 there were slightly fewer living donors than deceased donors. Since 1988, more than 390,000 organs have been transplanted, with approximately 80 percent of the transplanted organs coming from deceased donors (Table 2-3; OPTN, 2006). One concern is the number of organs that are recovered from deceased donors but not transplanted; it is estimated that each year 10 to 14 percent of the kidneys recovered are not transplanted4 (Delmonico et al., 2005). Adverse biopsy results account for 4 The percentage of kidneys that are recovered but not transplanted has remained relatively constant since 1995 (Delmonico et al., 2005).

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Organ Donation: Opportunities for Action FIGURE 2-1 Waiting list additions by organ, transplant candidates, 1995–2005. SOURCE: OPTN (2006). FIGURE 2-2 Organ donors by donor type, 1988–2005. SOURCE: OPTN (2006).

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Organ Donation: Opportunities for Action TABLE 2-3 Organ Donors, Transplants, and Waiting List Donor Characteristic or Organ Total Number from 1988 to December 31, 2005 Number on Waiting List as of March 24, 2006a Donors Transplantsb Total 176,640 364,545 91,214 Deceased 98,926 287,047   Living 77,714 77,498   Sex       Male 92,424 222,287 53,092 Female 84,216 142,258 38,178 Race-ethnicity       White 129,940 247,882 45,008 Black 21,625 62,340 25,050 Hispanic 18,896 36,482 14,410 Unknown 336 969 8 Asian 3,465 11,353 5,092 American Indian or Alaska Native 790 2,602 876 Pacific Islander 800 1,119 534 Multiracial 788 1,798 602 Age (years)       < 1 1,658 4,514 86 1–5 3,737 7,529 503 6–10 2,818 4,797 423 11–17 10,475 11,747 1,015 18–34 57,418 65,136 10,070 35–49 60,034 121,235 26,467 50–64 33,192 125,298 40,257 65+ 7,261 24,280 12,412 Unknown 47 9   Organ       Kidney 165,417 217,029 65,917 Liver 81,663 74,983 17,249 Pancreas 25,277 4,776 1,748 Kidney and pancreas 13,232 2,505   Heart 40,543 38,715 3,008 Lung 13,615 13,765 3,092 Heart and lung 900 149   Intestine 1,363 1,145 191 aThe total may be less than the sums of various categories due to individuals who are registered on the waiting list for more than one organ. bData are for number of organ transplantations. SOURCE: OPTN (2006).

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Organ Donation: Opportunities for Action the inability to use approximately 40 percent of the rejected kidneys, whereas clinical judgment decisions result in the inability to use an additional 25 percent (Delmonico et al., 2005). The utilization of other organs varies; hearts are the most highly utilized with only 1 percent not transplanted after recovery. About 4 percent of recovered livers were not transplanted, primarily because of biopsy results (Delmonico et al., 2005). In some situations, organs are recovered before the intended recipients are located. This occurs more often with kidneys and pancreata (because of the organ’s potential to withstand a longer time between recovery and transplantation); heart and lung transplantations generally occur at the time of recovery (Ojo et al., 2004). Further research is needed on the early identification of organs that are not eligible for transplantation. Improvements in the coordination of the recovery and transplant efforts are also needed. Over the past 10 years, minority populations have donated organs at increased rates. In the past, donation by minority populations has been hindered by mistrust of the healthcare system, inequities in access to transplantation, and failure to request donation. Although donations by minority populations are steadily increasing, several of these matters remain unresolved and need further attention. The donation rates by minority populations are now in proportion to their population distribution in the U.S. census (Table 2-4). However, there is an increased need for trans- TABLE 2-4 Organ Donation, Transplantation, and Waiting List by Ethnicity Ethnicity Population Distribution (%)a Percentage of Total Donations, 2005b Percentage of Transplant Recipients, 2005c Waiting List Distribution (%) as of March 24, 2006 White 75.1 68.9 63 49.3 African American 12.3 14 18.5 27.4 Hispanic 12.5 13.2 12 15.8 Asian 3.6 2.6 4.0 5.5 American Indian/ Native Alaskan 0.9 0.5 0.7 0.9 Pacific Islander 0.1 0.1 0.4 0.5 Multiracial 2.4 0.7 0.7 0.6 aU.S. Census Bureau data, 2001. The population distribution adds up to more than 100 percent because of the option in the 2000 census to select multiple categories to accurately describe one’s ethnicity. bIncludes deceased and living donors. c0.7 percent of transplant recipients are of unknown ethnicity. SOURCE: OPTN (2006); U.S. Census Bureau (2001).

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Organ Donation: Opportunities for Action plants, particularly kidney transplants, in minority populations because of the higher incidence rates of end-stage renal disease among the members of these populations (USRDS, 2005). In addition, there is still room for improvement in the rates of consent to organ donation among all ethnic groups. Deceased Donors The number of deceased donors increased over the 16 years from 1989 to 2005—from 4,010 in 1989 to 7,593 in 2005 (Figure 2-2). This reflects more successful efforts to obtain familial consent as well as efforts to focus on donation after circulatory determination of death and on extended-criteria donors (Howard, 2002). In 2005, 18 percent of deceased donors were men between the ages of 18 and 34 years, and 14 percent were men between the ages of 35 and 49 years (OPTN, 2006). For 19.8 percent of the deceased donors in 2005, the circumstance of death was motor vehicle crashes; death from natural causes was the circumstance of death for approximately 30 percent of deceased donors and homicides accounted for 6 percent. In the past decade there have been slight decreases in the number of deceased donors for whom the circumstance of death was motor vehicle crashes—from a high of 26.3 percent in 1995 to a low of 19.8 percent in 2005 (OPTN, 2006). The primary mechanism of death among all donors was intracranial hemorrhage or stroke, accounting for 44.2 percent of deceased-donor deaths in 2005 (OPTN, 2006). The median age of deceased donors has increased in recent years, from 34 years in 1995 to 42 years in 2004 (SRTR, 2005). Living Donors In 2005, there were 6,895 organ transplants from living donors: 6,562 kidney transplants, 323 liver transplants, 7 intestine transplants, 1 pancreas transplant, 1 kidney/pancreas transplant, and 1 lung transplant (OPTN, 2006). The majority of living donors in 2005 were ages 35 to 49 years (n = 3,238) (Table 2-5; OPTN, 2006). As discussed in Chapter 9, there are a wide range of emotional and genetic relationships between living donors and the transplant recipients. In 2004, 781 of the living donors were parents of the recipient, 1,257 were offspring, 9 were identical twins, 1,849 were full siblings, 70 were half siblings, 550 were other relatives, 790 were spouses, 1,474 were unrelated, and 222 were of unknown relationship (HRSA and SRTR, 2006). Advances in immunosuppressive therapies have resulted in fewer barriers to the use of organs from living unrelated donors, who have become one of the fastest-growing categories of living donors, increasing from 4.7 percent of living donors in 1995 to 21.1 percent in

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Organ Donation: Opportunities for Action TABLE 2-5 Donor Characteristics, 2005 Characteristic Deceased Donors (%) Living Donors (%) Totala 52.4 47.6 Sex     Male 58.3 40.9 Female 41.7 59.1 Age (years)     < 1 1.3 0 1–5 2.5 0 6–10 1.3 0 11–17 6.7 0 18–34 25.8 32.1 35–49 26.0 47.0 50–64 25.9 20.0 65+ 10.3 0.9 Unknown 0 0 aA total of 7,593 deceased donors and 6,896 living donors. SOURCE: OPTN (2006). 2004 (HRSA and SRTR, 2006). Additional details on living donation are provided in Chapter 9. Type of Organ Unique issues and challenges accompany the transplantation of each of the six types (or combinations) of solid organs that are currently transplanted—kidney, liver, heart, lung, pancreas, and intestine. This section highlights a few of the statistics and features associated with the transplantation of each type of organ. Kidneys Kidneys are the primary organs transplanted in the United States (Table 2-6), with the 17,667 kidneys transplanted in 2005 comprising 58.6 percent of all organs transplanted that year (OPTN, 2006). The kidney was the first organ transplanted in the United States, and because it is a paired organ, it is the organ most often transplanted in living donations. In 2005, approximately 95 percent of the organs transplanted from living donations were kidneys, as were almost 50 percent of the organs transplanted from deceased donors (OPTN, 2006).

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Organ Donation: Opportunities for Action TABLE 2-6 U.S. Kidney Transplantation, July 1, 2004, to June 30, 2005 Donors   Number of deceased-donor transplants 9,739 Number of living-donor transplants 6,673 Posttransplanta   Adult graft survival (%) at 1 year posttransplantation 91.69 Waiting List   Number of individuals on the waiting list at the start 58,195 Number of individuals on the waiting list at the end 64,349 Number of new patient registrationsb 28,985 Mortality rate while on the waiting list 0.08 aJuly 1, 2002–December 31, 2004. bAn individual transplant candidate can have multiple registrations (either at more than one center or for multiple organs). SOURCE: SRTR (2006). End-stage renal disease (ESRD)—which is often a result of insulin-dependent diabetes mellitus, hypertension, glomerulonephritis, or cystic kidney—is treated by hemodialysis or a kidney transplant. Diabetes mellitus accounted for 44 percent of new cases of treated ESRD in 2002 (CDC, 2005). In 2003, more than 93,000 new ESRD patients started hemodialysis and nearly 300,000 patients continued on hemodialysis in the United States (USRDS, 2005). Kidney transplantation is generally the preferred treatment for patients with ESRD, as patients experience improved quality of life and longer long-term survival rates (Wolfe, 2005). Data from the U.S. Renal Data System indicate that Medicare expenditures on ESRD in 2003 totaled $14.8 billion for the provision of dialysis, and $0.08 billion for transplantation (USRDS, 2005). Recent trends reflect increased expenditures associated with dialysis and graft failure and decreased expenditures for patients who have recently received transplants and for patients with functioning grafts (USRDS, 2005). Potential kidney transplant candidates constitute approximately 70 percent of the individuals on the entire Organ Procurement and Transplantation Network (OPTN)-United Network for Organ Sharing (UNOS) waiting list. In 2005, 29,177 candidates for a kidney transplant were added to the waiting list (OPTN, 2006). The net increase in the kidney transplant waiting list is approximately 3,000 to 4,000 individuals each year (Danovitch et al., 2005). It has been estimated that growth at this rate will result in 76,000 to 95,000 kidney transplant candidates by 2010 (Xue et al., 2001; Danovitch et al., 2005).

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Organ Donation: Opportunities for Action The average waiting time for a kidney transplant is becoming longer. In 2003, 43 percent of patients had been waiting for more than 2 years, whereas only 29 percent of patients had been waiting for more than 2 years in 1994 (Danovitch et al., 2005). In 2003, almost 11 percent had been waiting more than 5 years. Longer waiting times are particularly a problem for minority patients awaiting kidney transplantation (Table 2-7). For example, for African Americans added to the waiting list in 1999, the waiting time has been twice as long as that for white individuals (Danovitch et al., 2005). It is hoped that the changes in human leukocyte antigen (HLA) matching criteria made by UNOS (described below) will contribute to reduced waiting times. Another concern is the number of retransplantations needed. In 2004, 7,969 individuals on the waiting list for a kidney transplant (17.4 percent of the waiting list) had received a previous kidney or kidney/pancreas transplant (HRSA and SRTR, 2006). There are a number of reasons for graft failure and the need for retransplantation, some of which cannot be prevented, while others such as noncompliance with immunosuppressive medications can be partially addressed through increased insurance coverage for these medications and improved patient education (IOM, 2000). There is evidence of the benefit of preemptive kidney transplantation (before the patient begins dialysis) for some patients (Becker et al., 2006); however, only 13 percent of kidney recipients in 2003 received preemptive kidney transplants, and these were primarily through living-donor transplants (Danovitch et al., 2005). The number of kidney transplants has increased since 1994, to a great extent because of increases in the numbers of living donations. In 2005, 39.8 percent of kidney transplants resulted from living donations, and TABLE 2-7 Kidney Transplant Waiting List Registrations, 2001 to 2002 Ethnicity Number of Registrations Added to Waiting List Percentage Receiving Transplants After 1 Year on Waiting List Percentage Receiving Transplants After 2 Years on Waiting List White 24,336 18.1 32.2 African American 13,340 10.6 20.5 Hispanic 6,546 11.1 22.6 Asian 2,396 9.2 18.6 American Indian-Native Alaskan 485 11.3 22.1 Pacific Islander 340 7.2 18.9 SOURCE: OPTN (2006).

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Organ Donation: Opportunities for Action 60.2 percent resulted from deceased donations (OPTN, 2006). Of the 6,562 living-donor kidney transplants in 2005, 62.1 percent were from biologically related donors, 11.8 percent were from a spouse, 22.7 percent were from unrelated donors or donors whose relationship to the recipient is unknown, and 3.4 percent were not reported (OPTN, 2006). In 2005, 59.2 percent of living kidney donors were women (OPTN, 2006). Kidney transplant allocation has largely focused on HLA matching, which has been critical for ensuring transplant compatibility. A close match by HLA typing and time spent on the transplantation waiting list are the primary criteria used to allocate kidneys from deceased donors, with transplant candidates with no HLA mismatches given top priority (Roberts et al., 2004). Beginning in May 2003, allocation points were no longer assigned for HLA-B similarity (UNOS Policy 3.5.11.2), in the hope that this change would reduce disparities in the allocation of kidneys to African-American patients while having little adverse impact on graft survival (Roberts et al., 2004; Ting and Edwards, 2004; Danovitch et al., 2005). Another recent OPTN-UNOS policy change (Policy 3.5.12) specifies an allocation system for the donation of kidneys by the use of expanded criteria (Chapter 5). The expanded criteria include older age and greater latitude in the clinical test results used to allow the kidney to be transplanted. In 2005, 314 children under 10 years of age received kidney transplants as did 576 adolescents 11 to 17 years of age (OPTN, 2006). Kidney transplantation is especially advantageous for children. Dialysis is often inadequate as a treatment for children with impaired renal function, as it can result in a deceleration of growth (McDonald and Craig, 2004; Milliner, 2004). Furthermore, for children dialysis is associated with a risk of death four times greater than that for renal transplantation (McDonald and Craig, 2004). An area of concern for children undergoing renal transplantation is the use of corticosteroids following transplantation. The use of corticosteroids is associated with cardiovascular, endocrine, and bone disorders, as well as body disfiguration and growth retardation (Vidhun and Sarwal, 2005). Children who use corticosteroids have heights that are, on average, two standard deviations below the appropriate height for their age and sex (Vidhun and Sarwal, 2005). Immunosuppression protocols that do not use corticosteroids are under investigation at a number of treatment centers. It is hoped that improved immunosuppression protocols will eliminate many of the side-effects associated with corticosteroids and improve patient compliance. Young children have the best long-term graft survival of any age group of transplant recipients (Harmon et al., 2005). In contrast, adolescents have poorer long-term graft survival; noncompliance with treatment regimens among adolescents may contribute to this problem (Harmon et al., 2005).

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Organ Donation: Opportunities for Action BOX 2-1 Religion and Deceased Organ Donation Religion and culture both play fundamental roles in the decision of an individual or family to donate or withhold organs and tissues. Most major world religions support and encourage organ donation as an act of selflessness. Veatch (2000) provides a more in-depth discussion of the complex relationships between religious faith and organ donation. The following generalities are offered, with the acknowledgment that significant variations in views sometimes occur within religions. Christianity Protestant, Catholic, and Orthodox churches support organ donation and view it as expressing Christian values of selfless service to neighbors or strangers. Some denominations have active policies promoting donation while others see it as a matter of individual choice. Islam There is a strong belief in the principle of saving human lives and in seeking medical help for illness. Under these principles both the Shia and Sunni branches of Islam view organ donation as permissible provided the gift is freely given. Organ donation is generally supported in Arab countries; however, some Muslim scholars, particularly on the Indian subcontinent, have not been supportive of deceased organ donation. Judaism All major branches of Judaism (Orthodox, Conservative, and Reform) support organ donation not only as a mitzvah (or blessing) but as an obligation under the individuals express a belief that the body needs to be “whole” for life after death (Sanner, 1994; Rene et al., 1995); others are not aware that organ donation is supported by their religion (Nolan and Spanos, 1989). A multi-step study by Peters and colleagues (1996) included a telephone survey of people in Richmond, Virginia, followed by focus groups in five cities (Boston, Atlanta, Kansas City, Phoenix, and Seattle) to discuss organ donation. Nondonor focus group participants believed that it was important to go to the grave “whole,” with one’s organs intact. A survey of 158 individuals in Puerto Rico found that 12 percent believed that their body needed to be whole for resurrection after death (Rene et al., 1995). Studies have yielded inconsistent results when examining correlations between spirituality and willingness to consent to donation. For example, a Baltimore-area survey by Boulware and colleagues (2002a) found that individuals who considered religion or spirituality to be important were less

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Organ Donation: Opportunities for Action Jewish duty to save life (P’kuach nefesh). There is controversy in the Orthodox branch about the criteria for death. Hinduism There are no religious prohibitions against donation, and the belief in continual rebirth or reincarnation does not appear to conflict with donation. Hindu mythology includes examples of using body parts for the benefit of other humans and society. Buddhism Although some analogues within Buddhist writings could support organ donation, there is some ambivalence about transplantation. In particular, the concepts regarding neurologic determination of death may seem to contradict the Buddhist view of the interconnectedness of life and death. Confucianism and Taoism Official declarations regarding organ donation have not been made in Confucianism and Taoism. Traditional Confucian views accept the inevitability of death, while Taoism supports more aggressive measures to prolong life. These traditions are also closely intertwined with traditional Chinese medicine, which emphasizes preserving the integrity of the body. SOURCES: Gillman (1999); Veatch (2000). inclined to be organ donors. In contrast, a focus group study in Atlanta found that many participants believed that their religious values were the basis of their attitudes of altruism and wanting to make a difference in someone else’s life (Jacob Arriola et al., 2005). Siminoff and colleagues (2001b) also found that families who believed their religion encourages donation were likely (82.5 percent) to consent to donation. In a survey of African-American adults, the perception of religious and social norms supportive of organ donation was found to be predictive of a willingness for families to discuss organ donation (Morgan, 2004). On the other hand, in a survey of outpatients visiting a community physician’s office, religious affiliation or regular church attendance did not have an influence on willingness to donate (Haustein and Sellers, 2004). In a survey of 120 Chinese Americans, Lam and McCullough (2000) found that many respondents were influenced by Confucian values and also

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Organ Donation: Opportunities for Action by Buddhist and Taoist beliefs that “associate an intact body with respect for ancestors or nature” (p. 449) but that they were still willing to consider deceased organ donation. Rumsey and colleagues (2003) studied the individual organ donation-related decision making of 190 undergraduate students and found that religiosity predicted attitudes toward organ donation, regardless of the individual’s religious denomination or the frequency with which he or she attended religious services. As the different results of these various studies suggest, much remains to be learned about the role that religion and spirituality, in official and folk manifestations, play in organ donation decision making. Family Discussions Regarding Organ Donation Studies indicate that individuals who are willing to discuss donation with family members are more likely to have signed organ donor cards (Morgan and Miller, 2002; Morgan, 2004). The family’s knowledge of the wishes of the deceased regarding organ donation is one of the most important factors in the family’s decision of whether to donate (Sque and Payne, 1996; McNamara et al., 1999; Siminoff et al., 2001b; Siminoff and Lawrence, 2002; Sque et al., 2005). Major reasons for not consenting to donation are knowledge of the deceased’s wish not to donate and uncertainty about the deceased’s wishes (Jasper et al., 1991; Chapman et al., 1995; Rosel et al., 1999; Siminoff et al., 2001a; Frutos et al., 2002). Conversely, knowing that the patient had a donor card, having had an explicit discussion about donation with the patient, and believing that the patient would have wanted to donate, even apart from an explicit discussion, are strongly associated with familial consent to organ donation (Jasper et al., 1991; Tymstra et al., 1992; DeJong et al., 1998; Siminoff et al., 2001b). In one study families who were knowledgeable about organ donation were found to be more likely to consent to donation, whereas families surprised by being asked about organ donation were less likely (Siminoff et al., 2001b). Similarly, individuals who feel informed about organ donation are more likely to be committed to organ donation (Nolan and Spanos, 1989). There is little information on the extent to which families override the donation wishes of the deceased family member. Harris and colleagues (1991) conducted an experimental study using vignettes to examine how individuals weighed the wishes of the deceased and the wishes of the next of kin. The study found that in all cases in which the donor’s wishes were known, they were respected, even if the next of kin had different preferences than those of family members. Siminoff and colleagues (2001b) found in interviews with families of patients who were eligible to be donors

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Organ Donation: Opportunities for Action that 89.3 percent of families that knew that the patient had a donor card consented to donation. Some organ procurement organizations (OPOs) collect data on the number of times that families override the deceased family member’s wish to donate. For example, Intermountain Donor Services reported that of those eligible donors (deaths determined by neurologic criteria) who were on the donor registry for the years 2003 to 2005, only 3.5 percent were not donors because the family either provided new information that the deceased person did not want to donate or overrode the deceased person’s decision (personal communication, T. Schmidt, Intermountain Donor Services, March 2006). Other OPOs such as LifeNet (Virginia) report similar findings for 2003 to 2005 with between a 2 percent to 4 percent override experience (personal communication, K. Myer, LifeNet, March 2006); Gift of Life Donor Program (Pennsylvania) estimates an average of less than 1 percent of families have overridden a donor’s expressed consent in the past 10 years (personal communication, H. Nathan, Gift of Life Donor Program, March 2006). In cases in which the wishes of the patient are not known, families generally attempt to use what they know about the values and attributes of the deceased, seeking to honor what they believe the patient would have wanted (Sque and Payne, 1996). Quality of Health Care and Trust in the Healthcare System For individual decision making, trust in the medical system is a concern. In a survey of 163 patients, Yuen and colleagues (1998) found that although the majority of respondents (>70 percent) trusted the healthcare system regarding organ donation, 32 percent of African Americans, 15 percent of Hispanics, and 7 percent of whites agreed with the statement “Doctors would not try as hard to save me if they knew I was an organ donor.” Other surveys have also found that potential donors are concerned about not receiving the necessary medical attention if they have agreed to be an organ donor (Nolan and Spanos, 1989; Minniefield et al., 2001; Minniefield and Muti, 2002). In 6,080 telephone interviews with white, African-American, and Hispanic respondents, a willingness to donate was correlated with agreeing with the statement that “Doctors do all they can to save a life before pursuing donation” (McNamara et al., 1999). Similarly, a distrust of the medical community was noted as a major concern about organ donation in focus group discussions (Peters et al., 1996). For family decision making, studies have found that support by the healthcare staff, particularly by intensive care nurses, and the quality of health care were associated with consent decisions (DeJong et al., 1998; Sque et al., 2005). Siminoff and colleagues (2001b) found no association between consent rates and hospital characteristics or healthcare provider

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Organ Donation: Opportunities for Action characteristics (including age, sex, ethnicity, religion, or professional role); however, the healthcare provider’s ease in answering questions at the time of donation was positively associated with the decision to donate. In interviews with 350 parents about their potential willingness to donate their child’s organs, Walker and colleagues (1990) found that parents’ confidence in neurologic determination of death was a key factor in being willing to consent to donation. Other factors have been found to potentially play some role in family decisions about donation. In one study, the presence of large numbers of family members at the donation discussion led to greater numbers of non-consents (Frutos et al., 2002). Families who felt pressured to donate were less likely to donate (Siminoff et al., 2001b); concerns about disfigurement of the body are also of concern to some families (Nolan and Spanos, 1989; McNamara et al., 1999). Altruism, Cultural Norms, and Models of Willingness to Donate Altruistic beliefs and values are one of the mainstays of the voluntary organ donation system. Altruism is the unselfish concern for the welfare of others, and in deceased organ donation this particularly applies to the goal of improving the life of (usually unknown) patients who are the potential recipients of the donated organs. Individuals and families often want to see something positive come out of tragedy, and the “gift of life” and “donate life” themes of organ donation efforts highlight the values of altruism. In most cultures there is a strong affirmation of organ donation as an expression of altruism. Interviews with families who have confronted a donation decision find that giving meaning to the death is a key factor in providing consent for organ donation (Sque et al., 2005). Similarly, discussions with individuals have noted altruistic motivations as central to a positive attitude toward deceased organ donation (Jacob Arriola et al., 2005). Little attention has been given to the consideration of reciprocity or moral obligation as a motivation for organ donation. In considering the many factors in organ donation decisions, Radecki and Jaccard (1997) developed a theoretical framework for willingness-to-donate decisions that incorporates a set of five belief structures into the individual’s attitude toward becoming a donor: religious beliefs, cultural beliefs, knowledge beliefs, altruistic beliefs, and normative beliefs. The interactions of these beliefs, the roles played by each of the factors, and the extent to which they can be modified to encourage donation have been and continue to be areas of study (Horton and Horton, 1991; Sanner, 1994; Radecki and Jaccard, 1997; Farsides, 2000; Morgan and Miller, 2002; Morgan, 2004).

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Organ Donation: Opportunities for Action Cultural norms can result in different donation patterns. For example, in Japan, there have been few organ donations following neurologic determination of death; living donation and donation after circulatory determination of death occur more frequently (Nakata et al., 2001). Determination of death by neurologic criteria is not compatible with Japanese cultural values that include the wholeness of nature and of the human body. Furthermore, receiving a donation from strangers denotes for many Japanese people the need to repay the favor (Nakata et al., 2001). Research to date on the determinants of organ donation has been hampered by small sample sizes, limited variations in sample findings by geographic area, and failures to disentangle socioeconomic status variables from cultural variables, such as ethnicity and religion. Efforts to improve the organ donation process and encourage individuals and family members to consent to donation will need to take into account the many variables involved in the decision making. REFERENCES Alvaro EM, Jones SP, Robles ASM, Siegel JT. 2005. Predictors of organ donation behavior among Hispanic Americans. Progress in Transplantation 15(2):149–156. Armstrong GL, Alter MJ, McQuillan GM, Margolis HS. 2000. The past incidence of hepatitis C virus infection: Implications for the future burden of chronic liver disease in the United States. Hepatology 31(3):777–781. Barr ML, Bourge RC, Orens JB, McCurry KR, Ring WS, Hulbert-Shearon TE, Merion RM. 2005. Thoracic organ transplantation in the United States, 1994–2003. American Journal of Transplantation 5(4):934–949. Becker BN, Rush SH, Dykstra DM, Becker YT, Port FK. 2006. Preemptive transplantation for patients with diabetes-related kidney disease. Archives of Internal Medicine 166(1): 44–48. Boulware LE, Ratner LE, Sosa JA, Cooper LA, LaVeist TA, Powe NR. 2002a. Determinants of willingness to donate living related and cadaveric organs: Identifying opportunities for intervention. Transplantation 73(10):1683–1691. Boulware LE, Ratner LE, Cooper LA, Sosa JA, LaVeist TA, Powe NR. 2002b. Understanding disparities in donor behavior: Race and gender differences in willingness to donate blood and cadaveric organs. Medical Care 40(2):85–95. Burroughs TE, Hong BA, Kappel DF, Freedman BK. 1998. The stability of family decisions to consent or refuse organ donation: Would you do it again? Psychosomatic Medicine 60(2):156–162. CDC (Centers for Disease Control and Prevention). 2005. Incidence of end-stage renal disease among persons with diabetes—United States, 1990–2002. Morbidity and Mortality Weekly Report 54(43):1097–1100. Chapman JR, Hibberd AD, McCosker C, Thompson JF, Ross W, Mahony J, Byth P, MacDonald GJ. 1995. Obtaining consent for organ donation in nine NSW metropolitan hospitals. Anaesthesia and Intensive Care 23(1):81–87. Cheung AH, Alden DL, Wheeler MS. 1998. Cultural attitudes of Asian-Americans toward death adversely impact organ donation. Transplantation Proceedings 30(7):3609–3610. Creecy RF, Wright R. 1990. Correlates of willingness to consider organ donation among blacks. Social Science & Medicine 31(11):1229–1132.

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