6
Promoting and Facilitating Individual and Family Decisions to Donate

End-of-life decisions are difficult, particularly when one is confronting one’s own death. One of these personal decisions is whether to be an organ donor. This decision is a significant expression and exercise of personal autonomy, as the individual considers an action that after his or her death has the potential to save lives and improve the quality of life for others. When an individual decides that he or she wishes to be an organ donor, the decision is typically called “first-person consent”; but the committee prefers the term “donor consent,” thereby making it clear that the decision is being made by the “donor” not the family.

Increasingly, states are recognizing the right of an individual to make end-of-life decisions and to have such decisions honored. In addition, many states have followed the model legislation of the Uniform Anatomical Gift Act (UAGA) and have thus codified into law the primacy of the decisions of individual donors. As stated in the 1987 UAGA, “An anatomical gift that is not revoked by the donor before death is irrevocable and does not require the consent or concurrence of any person after the donor’s death” (National Conference of Commissioners on Uniform State Laws, 1987, Section 2[h]). Thus, when the individual’s decision regarding organ donation is known in those states (through a donor registry or some other documentation), no further family consent is needed, although families are informed and remain an integral part of the process. Nevertheless, the extent to which documents such as a driver’s license are considered official documentation of an advance directive still varies among the states (DHHS, 2000). These findings suggest that the United States may be in the midst of a



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Organ Donation: Opportunities for Action 6 Promoting and Facilitating Individual and Family Decisions to Donate End-of-life decisions are difficult, particularly when one is confronting one’s own death. One of these personal decisions is whether to be an organ donor. This decision is a significant expression and exercise of personal autonomy, as the individual considers an action that after his or her death has the potential to save lives and improve the quality of life for others. When an individual decides that he or she wishes to be an organ donor, the decision is typically called “first-person consent”; but the committee prefers the term “donor consent,” thereby making it clear that the decision is being made by the “donor” not the family. Increasingly, states are recognizing the right of an individual to make end-of-life decisions and to have such decisions honored. In addition, many states have followed the model legislation of the Uniform Anatomical Gift Act (UAGA) and have thus codified into law the primacy of the decisions of individual donors. As stated in the 1987 UAGA, “An anatomical gift that is not revoked by the donor before death is irrevocable and does not require the consent or concurrence of any person after the donor’s death” (National Conference of Commissioners on Uniform State Laws, 1987, Section 2[h]). Thus, when the individual’s decision regarding organ donation is known in those states (through a donor registry or some other documentation), no further family consent is needed, although families are informed and remain an integral part of the process. Nevertheless, the extent to which documents such as a driver’s license are considered official documentation of an advance directive still varies among the states (DHHS, 2000). These findings suggest that the United States may be in the midst of a

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Organ Donation: Opportunities for Action paradigm shift from relying on the next of kin to make donation decisions for deceased individuals to using donor consent documentation, whenever available, as the official mechanism of consent for organ donation (Ojo et al., 2004). This transition will not be easy, as organ procurement organizations (OPOs) and hospitals must consider how to address the family’s changing role in the organ donation process. This chapter discusses the issues involved in respecting, enhancing, and encouraging organ donation decisions by individuals and their families. It begins with a discussion of the strategies used to facilitate and document the decisions made by individuals to be donors (i.e., donor consent) and considers the broader educational efforts that are used to encourage individuals and their families to make the decision to donate their organs upon death. Much of the research on organ donation decision making is conducted through the extramural grants program of the Health Resources and Services Administration (HRSA). The committee was asked to provide input on that program and the information in this chapter is augmented by a discussion of the HRSA research program in Appendix E. A FRAMEWORK FOR INFORMED CHOICE Questions have been raised about the extent to which full informed consent is necessary for organ donation compared with the extent to which full informed consent is required for participation in a clinical trial of a medication or a medical device. That is, concerns arise about the extent to which a person signing a donor card or designating his or her preference on a driver’s license application understands the implications of the decision. The findings of research on other types of advance directives indicate that future thinking (in which the decision is made in a context devoid of actual circumstances) may be difficult for some people, and an individual’s preferences may also change over time (Beauchamp and Childress, 2001). Therefore, the use of clear decision-making pathways and the availability of easily accessible opportunities to change the decision are important. The committee believes that informed choice rather than informed consent should be the standard for public education and other related efforts on organ donation. This is because the decision concerns the disposition of the body after death rather than the survival or the quality of life of a living person. Informed choice, as envisioned by the committee, is grounded in the same principles as informed consent: respect for the autonomous choices of an individual who has the knowledge necessary to be able to make choices that are in accordance with his or her values, beliefs, and preferences (Thompson et al., 1995; Sheehy et al., 2003). The requirements for an individual to be able to make an informed choice are a decision-making capacity (the ability to understand information relevant to the decision and

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Organ Donation: Opportunities for Action the capacity to reason and deliberate about various options), understanding of the options (which requires that the relevant information be disclosed to the individual), voluntariness (so that the individual may make the decision free of coercion), and the ability to communicate a choice (Beauchamp and Childress, 2001). The development of tools that can provide the information needed in culturally sensitive ways, that inform the decision maker, and that are not coercive is imperative. Several different possible options for the solicitation of donor decisions are discussed below. MANDATED CHOICE Mandated choice, or required response, is an approach to donor identification in which all adults are required to state their organ donation preferences. Many states currently offer the option of voluntarily recording donation choices. The mandated-choice model would require each adult to make an explicit choice and would offer a routine, uniform, and systematic means of collection of and access to data on donation preferences (Dennis et al., 1993). By requiring all people to consider whether they would agree to organ donation, mandated choice could help ensure that their preferences would be known and respected. Mandated choice can thus be described as the most direct approach to decision making regarding organ donation because each individual states his or her decision at a time of noncrisis, in advance of illness and death (Davis, 1999). For proponents of this model, the extended reach of the government in this area is more than offset by the lifesaving potential offered by organ donation (Veatch, 1991). As described above, UAGA and subsequent state laws have set forth the legal mandates upholding the primacy of the individual’s determination to donate his or her organs. Currently, in many situations, the individual’s wishes regarding organ donation are not known at the time of his or her death and it is up to the family to make the decision. Additionally, although family members agree to follow the individual’s wishes (if they are known) in the majority of cases, in a small number of cases the family overrules these wishes (see Chapter 2). Under a fully implemented mandated-choice model that is within the framework of UAGA, individual decisions would be known and honored. Proposals for models of mandated choice have focused on the incorporation of a set of questions about organ donation into official government documents, such as driver’s license applications, tax returns, or state identification cards (Veatch, 1991; Spital, 1995, 1996; Herz, 1999; Farsides, 2000; Starr, 2000; Chouhan and Draper, 2003). Opportunities to indicate an organ donation preference would be as inclusive as possible to record the decisions of a wide range of adults, some of whom may not file tax returns or obtain a driver’s license (Chouhan and Draper, 2003). Under

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Organ Donation: Opportunities for Action most proposals, the document would not be accepted until the individual submitting the document responded to the donation questions. One of the options for the organ donation decision could include delegation of the decision to a designated surrogate. Decisions would be binding, although opportunities to change the decision would be readily available. As part of a donor registry system, the choice would be confidential but would also be readily accessible to the appropriate medical personnel. Modifications that have emerged under this rubric generally offer variations in the complexity of choices and in the opportunities for public education. The options could be quite broad—“yes,” “no,” or “let someone else decide”—or highly detailed, with multiple options to indicate specific organs for donation (Dennis et al., 1993; Herz, 1999). The option not to donate would be available, as would the option to give another person the authority to make that decision. Public education and informed choice are areas of emphasis in most proposals. In addition, it has been argued that the mandated-choice approach should be accompanied by educational materials on organ donation that emphasize the benefits to the recipients and the importance of community solidarity (Chouhan and Draper, 2003). There has been limited experience with approaches that have some characteristics of mandated choice. A Texas law enacted in 1991 required a “yes” or “no” choice regarding donation at the time of driver’s license renewal but was repealed in 1997 because of concerns regarding a lack of public education (Herz, 1999), as drivers often confronted the organ donation decision for the first time at the time of their driver’s license renewal. Furthermore, the system defaulted to “no” when drivers preferred to register an undecided decision. In July 2000, the Commonwealth of Virginia enacted legislation requiring mechanisms to be put in place so that an individual applying for a driver’s license or identification card could designate his or her willingness to be an organ donor. While all individuals were asked to respond, the choice was not mandatory and nonresponse options were available. However, because a binary computer system was initially being used by the department of motor vehicles, all responses other than “yes,” defaulted to “no” (including nonresponses and undecided). The resulting high percentage that were recorded as “no” responses caused a reexamination of the system. Subsequent changes and the implementation of a web-based registry have alleviated the initial problems and provided for opt-in responses only (personal communication, K. Myer, LifeNet, March 2006). Little empirical evidence is available on the potential impact or the effectiveness of a mandated-choice approach. A national telephone survey with random-digit dialing conducted by the Gallup Organization in 1993

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Organ Donation: Opportunities for Action found that 63 percent of respondents said that they would agree to organ donation in a mandated-choice system (Spital, 1995). Individual Autonomy The underlying ethical principle in discussions of mandated choice is that of individual autonomy. Proponents emphasize the choice that this approach offers. That is, this approach is centered on individual decision making and ensuring that the individual’s wishes about the disposition of his or her body are followed at the time of death (Veatch, 1991; Dennis et al., 1993; Spital, 1995, 1996; Herz, 1999). However, mandated choice has also been criticized for impinging on personal autonomy by requiring that individuals make a decision, whether they want to or not. Citizens of the United States rarely face compulsory reporting requirements. Individuals receive a direct benefit from some mandated requirements (e.g., permission to drive from a driver’s license), whereas other requirements allow the individual to contribute to the common good (e.g., by registering with the Selective Service System and filing federal, state, and local taxes). The challenge is in determining whether the common good that might result from increased rates of organ donation would outweigh the government interference in mandating a decision. Furthermore, evidence in the decision-making literature suggests that forcing a decision on an admittedly personal matter such as organ donation will have a detrimental effect and that the forced choices may be negative choices. This is particularly relevant in a country like the United States, whose citizens place a high value on individual freedoms. For example, when a person’s preferences about a topic are not fully clear, being forced to choose can produce conflict and psychological discomfort, which in turn can lead to the selection of options that reduce the need to make hard choices (Lewin, 1951; Festinger, 1964; Janis and Mann, 1977) and that are associated with a lower likelihood of error and conflict (Luce, 1998). Dhar and Simonson (2003) show that the options selected in a forced-choice task tend to be those that seem safer; that are easier to justify; and that help alleviate decision conflict, discomfort, and potential regret associated with being forced to make a choice despite the lack of a clear preference. In other words, such options are not selected primarily because of their intrinsic value but, rather, because they help resolve a difficult choice. In the organ donation context, the easier choice may well be to decline to donate or to decide not to choose (if a no-choice option is available). Counteracting that tendency would require extensive public education about the common interest that all Americans have in organ donation. It has been argued that the current system has an implied decision-

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Organ Donation: Opportunities for Action making structure, because in not choosing to join a donor registry or to make the decision on the driver’s license application, the default is to let the family decide (Herz, 1999). Opponents of mandated choice are concerned that among the people currently not choosing to donate, the number of people who will say “yes” under a mandated-choice regime will be offset by the number of people saying no without conviction, a definitive act that precludes a subsequent family decision to donate the individual’s organs after his or her death. Timing and Family Involvement One of the greatest challenges to the current system of donation is that families are confronting organ donation decisions at a time of traumatic grief and emotional stress. Mandated choice thus allows consent to be expressed before an illness or death (Davis, 1999). As stated by Carl Cohen, under the current system, “We ask the wrong persons, at the worst possible times, questions they should never have been asked” (Cohen, 1992, p. 2169). Mandated choice moves the decision-making process out of a time of crisis, and with the decision already made, families know that their loved one’s wishes are being honored. In the 1993 Gallup survey mentioned above, 93 percent of respondents said that they would honor the previously expressed wishes of their deceased family member (cited in AMA, 1994). Other studies have confirmed that knowing that the family member would have wanted to donate his or her organs is strongly associated with following those wishes and with familial consent for donation (Chapter 2) (DeJong et al., 1998; Siminoff et al., 2001). It would be important to consider the role of the family if mandated choice were implemented in the future, particularly in light of laws regarding first-person consent. A policy of mandated choice might be met with resistance because family consent would no longer be an important element of organ donation (Klassen and Klassen, 1996). For a variety of reasons, including distrust in the healthcare system and the threat of legal repercussions, members of the public, healthcare teams and hospitals, and OPOs may be reluctant to support a system that limits or discounts families’ preferences in such a sensitive area after the death of a loved one. Next Steps Regarding Mandated Choice The committee believes that a mandated-choice approach could be implemented in an ethically appropriate manner, but only after extensive public education. At best, the number of donated organs could be increased under a mandated-choice system. If that is so, then mandated choice is not an overly burdensome requirement. However, on the basis of the limited

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Organ Donation: Opportunities for Action empirical evidence available to date, in the worst case it could be possible that the number of donated organs would decrease. To be successful, a mandated-choice model needs an informed citizenry that understands organ donation and what it means for the individual and for the recipient and that sufficiently trusts the system to go on record as an organ donor. Without giving people adequate and accessible information, merely forcing them to choose to be an organ donor or not does not capture the potential of mandated choice and weakens the argument for it. A broad-based and multidimensional educational campaign is needed that confronts issues around death and dying, debunks the myths and misperceptions surrounding organ donation, and emphasizes the benefits of organ donation. Pilot tests of mandated choice could be reconsidered in the future when there is a broader and more accurate understanding of organ donation among all sectors of U.S. society. If public education is successfully intensified, however, mandated choice may prove to be unnecessary. VOLUNTARY CHOICE: EXPANDING OPPORTUNITIES TO DOCUMENT DONATION DECISIONS The current organ donation system is focused on voluntary choice: the right of the individual (or the family as the surrogate) to choose to donate organs after death. Preliminary data from the 2005 National Survey of Organ Donation show that 53.5 percent of respondents indicated that they had declared an intention to be an organ donor by designating it on a driver’s license, 29.3 percent had a donor card, and 14.3 percent had signed up to be on a donor registry1 (Wells, 2005). Many factors influence the general public’s willingness to donate organs. Although new and innovative initiatives have recently begun to increase the rates of organ donation (e.g., the Organ Donation Breakthrough Collaboratives, which focus mainly on system improvements and decision making at the time of death [Chapter 4]), the current overall low rate of organ donation has been attributed by many investigators to the varied cultural norms in the community, religious beliefs, age, ethnicity, a lack of insurance, unemployment, and a general suspicion of the heathcare system (specifically, the concern that if one were identified as an organ donor, one might receive less intensive medical care) (Chapter 2). Individuals can record their donation decisions by several mechanisms. The challenge is to ensure that the decision recorded is available to OPO and healthcare professionals, should the need arise to consider donation. 1 The extent of overlap between these groups was not specified.

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Organ Donation: Opportunities for Action Key Issues for Donor Choice Informed Choice For donor consent to be valid and capable of being used as an advance directive, the general public needs to be provided with accurate information about all aspects of organ transplantation; efforts should be aimed at demystifying the process and ensuring that the choice is an informed one. To date, legal or ethical standards have not been established to delineate the minimum amount of information necessary to ensure adequately informed choice. Furthermore, disclosure of information by itself does not ensure comprehension and understanding. Later, this chapter discusses ways to enhance public education and raise public awareness. Communicating Decisions to Family In addition to documenting an individual’s decision to become an organ donor, it is also important for the individual to communicate that decision to family members. A study involving the families of 420 donors and nondonors found that prior knowledge of the individual’s positive decision on donation was significantly associated with the family’s willingness to provide consent for donation (Siminoff et al., 2001). Furthermore, families who had had discussions about organ donation were more likely to agree to donate. Even if an individual has not formally taken the step of documenting his or her decision, expressing thoughts and opinions about organ transplantation with family members gives the family a basis for decision making after an unexpected death. A major source of family information related to organ donation is the media; and studies show that media stories, which are often negative or at least ambiguous, frequently influence families not to donate (Morgan et al., 2005). This finding makes family discussions about organ donation even more important. Preliminary results from the 2005 National Survey of Organ Donation found that 70.4 percent of those who wished to donate had discussed it with their families (Wells, 2005). However, organ donation may be an uncomfortable topic for some family members: for some, it raises the specter and fear of death, and such discussions may be rapidly dismissed by family members; for others, individuals may have fundamental disagreements with their family about end-of-life decisions. Many families, on the other hand, would engage willingly in such conversations. Clearly, as with other advance directives, these conversations are important. Honoring Donor Consent Until recently, the deceased individual’s preference for organ donation, as designated on a driver’s license, a signed donor card, or a state donor

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Organ Donation: Opportunities for Action registry, was used primarily as information provided to the family to assist them in making a decision regarding organ donation. Rarely was it implemented as legally binding documentation (DHHS, 2000). Recognizing this as a limiting factor, 43 states and the District of Columbia have enacted first-person consent (donor consent) laws designed to affirm the legal strength of such documentation as advance directives (UNOS, 2005a; Appendix C). It is natural to approach the families of deceased individuals to discuss organ donation, and recent experience suggests that families rarely object when they are advised of the decedent’s documented consent (Chapter 2). However, in cases in which families are resistant, it is important to be respectful of the family’s beliefs and attitudes while honoring the donor’s recorded wishes. Confidentiality of Donor Registrations It is generally agreed that the confidentiality of donor registries is important and that access should be restricted to a need-to-know basis for relevant healthcare professionals. A culture of organ donation within a community may also be created or enhanced by publicizing the organ donation registrations of individuals who have given explicit permission for this to be done. The goal would be to encourage others to donate by acknowledging organ donation as the accepted and practiced action of many individuals in the community. Careful study will be needed to determine whether this approach is feasible, helpful, and clearly distinct from registration efforts overall. Next Steps: Facilitating and Documenting Decisions to Donate The most ethically appropriate manner to obtain consent for organ donation is directly from the individual (since this respects autonomy in determining the fate of one’s own body), before a time of crisis, so that the individual can reflect and carefully think about the decision. Such elective decision making also facilitates the provision of culturally sensitive information about organ donation so that enough information is available for an individual to make an informed choice. The decisions should be binding on others (albeit easily changeable by the individual during his or her lifetime). It is therefore important to provide multiple venues and opportunities for individuals to learn about organ donation and document their donation decisions. Furthermore, efforts are needed to ensure that donation decisions are accessible to the relevant healthcare professionals through secure online registries.

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Organ Donation: Opportunities for Action Driver’s License Registration Designation of consent for organ donation on a driver’s license is a common and effective method for documenting organ donation decisions. More than 196 million drivers are licensed in the United States (FHWA, 2004), and license registration and renewal thus offer the opportunity to disseminate information to large numbers of individuals. Most states provide information on organ donation in their driver’s education materials and also provide an option to designate the donation decision on the driver’s license. A driver’s license may be located by law enforcement and made available to healthcare personnel at the time of a tragedy. However, the value of designating organ donation at the time of driver’s license registration or renewal is that in most states the state department of motor vehicles uploads that data directly into the state’s online organ donor registry, thereby making it readily accessible to relevant OPO and healthcare personnel. Additionally, the opportunity to designate a donation decision when a person first obtains a driver’s license or at license renewal may lead individuals to discuss organ donation with their family members, a discussion that can be invaluable to the family if the need to address donation occurs because of a tragedy. An added benefit might be gained if driver’s license registration triggered an educational printout or the dissemination of other educational materials at the department of motor vehicles that encourage the driver to share this decision with his or her family members. Given the convenience of documenting donor consent on a driver’s license, it is interesting to note that in a random-digit-dialing study in Maryland, 66 percent of individuals stated that they would be willing to donate an organ to a sibling, but only about half of the respondents had designated themselves a donor on their driver’s license (Boulware et al., 2002). Therefore, although use of the driver’s license to designate the desire to be an organ donor may be effective, it is not always used even by individuals who support organ donation. Donor Cards Many states have enacted laws stating that a wallet-sized uniform donor card, signed by an individual at least 18 years of age in the presence of two adult witnesses, suffices as official documentation for organ donation (DHHS, 2000). In some states, the donor card is considered the necessary legal documentation for first-person consent for donation, whereas in other states the driver’s license is also accepted as documentation. For example, in North Carolina a uniform donor card signed in the presence of witnesses provides the OPO with sufficient legal authority for organ recovery without

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Organ Donation: Opportunities for Action additional authority from the donor or the donor’s family or estate, whereas the indication regarding donation on a driver’s license is considered to represent only the intent to donate and not legal documentation (UNOS, 2005a). In other states, such as New Mexico, legislation states that the driver’s license is one means of designating first-person consent, which can also be designated by a donor card, a living will, or a durable power of attorney for health care (UNOS, 2005a). Donor Registries Rapid and secure access to an individual’s decision regarding organ donation is important for the OPO and hospital personnel involved in organ donation. Although “donor registry” has various definitions, particularly internationally (Gäbel, 2004), the committee uses this term to mean an online systematic source of accessing donor consent information 24 hours a day, 7 days a week. The patient’s driver’s license, donor card, or end-of-life directive may or may not be available to healthcare providers when important decisions need to be made, and therefore, the availability of donor registry information online can quickly provide the donation decision information that OPO and hospital personnel need. As of November 2005, 35 states had organ donor registries and others are in the legislative and administrative processes of implementing a registry (UNOS, 2005a) (Appendix C). This is a significant increase from the number in 2002, when 14 state registries were identified (DHHS, 2002b). In most states the department of motor vehicles (or the agency responsible for licensing drivers) is the primary portal for the donor registry (DHHS, 2002a,b). Additionally, a number of states have easily accessible websites for individual donor registration. The incorporation into donor registries of individual donation registrations and data from the department of motor vehicles and donor card registration sources thus increases the extent of coverage of the registry and the potential for the registry to be used to the greatest benefit. The principal factor limiting the effectiveness of registries is that only small numbers of people are currently registered. However, many of the state registries have come into existence only in the past 5 years, and the cumulative effect of ongoing registrations and the long-term benefits of increasing the rates of organ donation will be seen only when they are tracked over time. Beasley and colleagues (1999) modeled the cost of organ donor registries and estimated that when the incremental benefit of donor registries (above and beyond current donor strategies) is considered, 83,300 registrations would be required to realize one potential new donor within a year. However, the ongoing nature of donor registries (an individual’s name will

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Organ Donation: Opportunities for Action Driver’s License Registration As discussed above, because many states use the state department of motor vehicles as a route to register donor consent, proactive education is an opportune way to incorporate and refresh the population’s education on organ donation. With more than 196 million licensed drivers in the United States needing to renew their licenses on a periodic basis, continued efforts are needed to bolster the information provided in driver’s manuals and disseminated at department of motor vehicles offices. The collaboration and linkages between state department of motor vehicles offices and the transplantation and healthcare communities have played important roles in increasing the numbers of registrants in donor registries and in providing an avenue for public education regarding donation. Efforts are needed to continue to increase the cultural sensitivity of organ donation educational materials, clarify the options regarding consent for organ and tissue donation on driver’s license forms, and continue the promotion of decisions regarding organ donation. Youth Providing information to students, particularly during driver’s education classes, has been another important avenue for public education on organ donation. In 2004, HRSA began distributing “Decision: Donation,” a packet of educational materials—including print, video, CD-ROM, and Internet-based materials—that teachers can use to boost awareness of organ donation issues (DHHS, 2005b). In 2004, these materials were distributed to 25,000 high schools among 16,000 school districts nationwide (personal communication, M. Ganikos, HRSA, 2005); the recipients included 23,000 driver’s education programs within those schools. Eight states currently require organ donation information to be provided in driver’s education courses: Arkansas, Iowa, Louisiana, Maine, Massachusetts, Minnesota, New Mexico, and Wisconsin (personal communication, M. Ganikos, HRSA, November 2005). Among other states, Ohio includes organ donation information in driver’s education courses, but it is not legislatively mandated. Knowledge about organ donation is generally associated with positive opinions about donation (Nolan and Spanos, 1989; Weaver et al., 2000). Several studies have examined educational interventions in high schools (Weaver et al., 2000; Reubsaet et al., 2005). Researchers conducting a study of 2,868 students in 39 high schools in The Netherlands in which students were randomly allocated to attend or not attend an organ donation education program found in a posttest that students who attended the two-session program had higher levels of intention to register as an organ donor

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Organ Donation: Opportunities for Action and were more knowledgeable about organ donation than the students in the control group (Reubsaet et al., 2005). A pilot educational intervention study by Weaver and colleagues (2000) of a much smaller number students (n = 72) found increased knowledge of organ donation in the intervention group and similar changes in opinion regarding the decision to donate. Community Grassroots Efforts and Minority Populations Community grassroots efforts focused on public education are important to increasing rates of organ donation. These efforts are particularly valuable when the community does its own strategic planning, implementation, and problem resolution because it can better address the issues, concerns, and topics of interest to the particular ethnic, cultural, or religious groups in that community. Furthermore, there are opportunities to leverage these efforts by working with community coalition partners in events and initiatives that provide health screenings (e.g., blood pressure and diabetes screening) and health promotion information. Additionally, it is important for faith-based organizations to continue to be involved in encouraging organ donation. For many people, issues regarding death and dying are closely intertwined with their faith and spirituality. Faith leaders are encouraged to continue to reaffirm and publicize the position of the denomination or religion regarding organ donation. One of the challenges in increasing organ donation rates has been to engage minority populations in organ donation. Recent statistics (Chapter 2) indicate that progress is being made and that minority populations are donating in proportions equal to or even greater than their proportion of the total population. This progress may in part represent the result of programs started years ago. Beginning in the 1980s, efforts were made to identify and address organ donation barriers faced by African Americans, and in the last decade these efforts have expanded to other minority populations. One large-scale effort is National MOTTEP, a research-based effort funded by the National Institutes of Health (NIH)2 to address the organ donation issues of minority populations. Begun as an effort focused on organ donation by African Americans, the program has expanded to include Latino-Hispanic, Native American, and Asian-Pacific Islander populations. National MOTTEP uses media campaigns and grassroots efforts to 2 From 1993 to 2005, National MOTTEP received approximately $16 million in funding from the NIH Office of Minority Health Research, the National Institute of Diabetes & Digestive & Kidney Diseases, and the National Center on Minority Health and Health Disparities.

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Organ Donation: Opportunities for Action disseminate a two-pronged message: preventing chronic diseases (particularly hypertension, renal failure, and diabetes) and increasing awareness of organ donation (with information provided on the options for registering as an organ donor). Before the inception of the National MOTTEP, a community focus group identified five main points of reluctance to organ donation in the African-American community that affect donation rates: the lack of community awareness of the need for transplantation, religious myths and misconceptions, general distrust of the medical community, fear of premature death, and racism (Callender et al., 2002). The focus group determined that the most effective communicators of information to potential donors would be individuals who shared a similar ethnicity and a similar set of cultural values with potential donors; individuals who conducted face-to-face dialogues with community members; and transplant recipients, potential recipients, donors, and donor families, along with healthcare professionals. This methodology was later enhanced through the use of widespread media campaigns and college outreach activities targeted to minority communities to effectively improve awareness of organ donation (Callender et al., 1995). In 1998 and 1999, an assessment of the effectiveness of the National MOTTEP model was conducted with 914 adults with diverse ethnicities in 13 cities (Callender et al., 2001). Surveys completed before and after a MOTTEP presentation found significant increases in the levels of awareness of perceived need, trust in doctors, future plans to donate, and shifts in religious and spiritual beliefs about donation. In a further evaluation, telephone interviews were conducted 2 to 3 months following participation in a MOTTEP presentation. The interview was designed to assess whether the alterations in behavior were sustained and explicitly assessed the number of people who had signed donor cards, determined whether family discussions about donation were conducted, and determined whether the participants were willing to be donors after the intervention. A total of 253 telephone interviews were conducted. Preliminary analysis showed improvements in all three of the behaviors being measured (Callender et al., 2002). Furthermore, an analysis comparing the number of deceased donors at MOTTEP and non-MOTTEP sites found higher rates of donation for Caucasians, African Americans, Latinos, and Asians (Callender et al., 2005) (Table 6-2). The National MOTTEP plans to continue its grassroots campaigns to educate minority communities about organ donation and strategies that can be used to prevent diseases and behaviors that lead to organ donation. Its next phase will focus on reducing institutional racism by empowering minority communities to respond to ethnic disparities, correcting false assumptions made by the medical community about their patients, and encouraging overall behavioral and attitude changes in the medical com-

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Organ Donation: Opportunities for Action TABLE 6-2 Comparison of Deceased Donors at MOTTEP and Non-MOTTEP Sites Ethnicity MOTTEP Site Non-MOTTEP Site Adjusted Donation Ratea Number of Deceased Donors/ 1,000 Deathsb Number of Donors Number of Deceased Donors/ 1,000 Deathsb Number of Donors Ratio (MOTTEP Site to Non-MOTTEP Site) P value White, Non- Hispanic Caucasian 59.3 4,938 59.2 11,279 1.07 0.02 Hispanic or Latino 106.9 1,055 47.4 886 2.29 <0.01 African American 43.4 1,263 32.9 1,286 1.40 <0.01 Other 50.7 228 43.4 272 1.59 <0.01 aAdjusted for age, sex, and Organ Procurement and Transplantation Network region. bNumbers of deceased donors per 1,000 evaluable deaths. SOURCE: Callender et al. (2005). munity. Key to the success of this effort will be involvement by the relevant professional associations, including the American Medical Association, the National Medical Association, the National Hispanic Medical Association, the American Nurses Association, the National Black Nurses Association, and the National Association of Hispanic Nurses. Continued funding is needed for the National MOTTEP and similar grassroots efforts. The National Center on Minority Health and Health Disparities can play a key role in promoting organ donation and in reducing the healthcare disparities of concern regarding transplantation; however, to date funding for these purposes has been limited. Increasing the organ donation rates by all population groups is the essential first step in meeting current and future needs for organs. To accomplish this goal, robust, culturally sensitive educational materials will be needed, as will novel approaches to reaching minority communities. An interesting demonstration of an approach that is sensitive to minority populations is a study that examined the attitudes of English and Spanish-speaking U.S. Hispanics on ways to initiate discussions on organ donation. The use of kiosks with information on organ donation was identified as a potentially effective strategy, outweighing appeals via computer or the U.S. mail for the population studied (Siegel et al., 2005).

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Organ Donation: Opportunities for Action Although many organizations, states, and government agencies have developed excellent educational materials and interventions, at present no centralized set of culturally sensitive materials on organ donation exists. Such materials would provide a valuable resource for many states and organ donation organizations. Next Steps for Public Education For public education to be effective, it is important to consider the way in which messages are conveyed. The message should be highly visible, presented in a clear and easy-to-understand format, presented so it is accessible to individuals of various educational levels, and provided by a trustworthy source that is sensitive to the ethnicity and cultural values of the target community. It has been suggested that the most effective messengers come in the form of transplant recipients and donors, donor families, and donor candidates (Callender and Maddox, 2004). There is a need to provide information that will address specific issues of concern and dispel myths regarding organ donation. For example, recent changes in allocation policies (e.g., changes made in the allocation algorithm to deemphasize the importance of human leukocyte antigen typing for kidney transplantation) should be highlighted with explanations of the potential positive impact of these changes on reductions in waiting times for African-American candidates for transplantation (Chapter 2). Entertainment and media outlets, particularly individuals responsible for media content including writers and producers, have responsibilities to accurately portray organ donation efforts and are encouraged to continue to work with the organ transplant community to ensure that myths and misperceptions are not perpetuated. Improving and extending public education will require the efforts of the many stakeholders and organizations involved, including nonprofit organizations, entertainment and media organizations, community coalitions, OPOs, hospitals, HRSA, NIH, and the Centers for Disease Control and Prevention (CDC). HRSA has been the locus of much government funding in this area, and as requested in the charge to the committee, Appendix E provides an examination of the HRSA Division of Transplantation’s extramural research program in which a variety of public education and other approaches are being explored. One of the many strengths of the program is that the grants are required to be developed with a strong evaluation component. Further, the team submitting the grant proposal must be constituted as a consortium that includes an academic or other research-based partner. HRSA also provides extensive technical assistance. Limited funding is of concern as it has placed constraints on the potential to explore additional innovative

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Organ Donation: Opportunities for Action approaches and to scale up those interventions that have been found to be promising. The Division has leveraged the opportunities presented by the Organ Donation Breakthrough Collaboratives to incorporate new findings into the work of the collaborative hospitals and OPOs. SUMMARY AND RECOMMENDATIONS Making an informed choice regarding organ donation, documenting that decision, and sharing the decision with family members are the key steps in ensuring that individuals are able to exercise their rights to make a determination about the disposition of their organs after death. This decision is a significant expression of personal autonomy, as the individual considers an action that after his or her death has the potential to save lives and improve the quality of life for others. Many myths surround organ donation and serve as barriers to increased donation rates. Therefore, public education that is culturally sensitive and that uses effective community education strategies is needed. Public education about organ donation should emphasize that all members of society have a common interest in an adequate supply of organs because all are potential recipients as well as potential donors. Each individual should have multiple opportunities to learn about organ donation and to express his or her desire to donate. Furthermore, mechanisms are needed to ensure that recorded decisions to donate are accessible to the relevant healthcare professionals and OPO staff on a 24-hour-a-day, 7-day-a-week basis. The committee believes that it would be premature to move toward a policy of mandated choice, even on a pilot basis, until efforts are first undertaken to implement the recommendations made elsewhere in this report to increase first-person consent and to make donation the expected act by families of deceased individuals who have not recorded their desire to donate. Recommendation 6.1 Increase Public Understanding of and Support for Organ Donation. HRSA, NIH, CDC, the United Network for Organ Sharing, OPOs, voluntary health organizations, faith-based organizations, community coalitions, and other interested parties should strengthen their efforts to provide public education about organ donation through multiple media and educational venues. They should pay particular attention to developing and disseminating culturally sensitive educational materials that can be understood by individuals with different levels of education. Entertainment and media organizations should strive to accurately portray organ donation and transplantation.

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Organ Donation: Opportunities for Action Recommendation 6.2 Increase Opportunities for People to Record Their Decision to Donate. HRSA, state and local governments, nonprofit organizations, community coalitions, and other interested parties should provide multiple opportunities for individuals to receive information on organ donation and to record their donation decisions. These opportunities should be provided at the times of driver’s education and licensing and advance care planning, as well as through work-, faith-, school-, and community-based initiatives. Recommendation 6.3 Enhance Donor Registries. State governments (including departments of motor vehicles), OPOs, and HRSA should work together to: ensure full access to and sharing of donor registration data; ensure that a nationwide networked system of registries that identifies self-declared organ donors is readily accessible to OPOs and healthcare professionals on a 24-hour-a-day basis, and is updated daily. Recommendation 6.4 Mandated Choice Should Not Be Enacted. At this time, states should not enact legislation requiring people to choose whether or not to be an organ donor (mandated choice). REFERENCES AMA (American Medical Association), Council on Ethical and Judicial Affairs. 1994. Strategies for cadaveric organ procurement: Mandated choice and presumed consent. Journal of the American Medical Association 272(10):809–812. Beasley C, Boyle C, McNamara P, Guardino S. 1999. Estimating the potential effects of donor registries using a simple analytical model. Transplantation Proceedings 31(3): 1701–1702. Beauchamp TL, Childress JF. 2001. Principles of Biomedical Ethics, 5th ed. New York: Oxford University Press. Boulware LE, Ratner LE, Sosa JA, Cooper LA, LaVeist TA, Powe NR. 2002. Determinants of willingness to donate living related and cadaveric organs: Identifying opportunities for intervention. Transplantation 73(10):1683–1691. Bradley BA, Brooman PM. 1980. Panorama’s lost transplants. Lancet 2(8206):1258–1259. Callender CO, Maddox G. 2004. Three decades of overcoming the African-American donation disparity. Nephrology News and Issues 18(12):39–40, 57. Callender CO, Bey AS, Miles PV, Yeager CL. 1995. A National Minority Organ/Tissue Transplant Education Program: The first step in the evolution of a national minority strategy and minority transplant equity in the USA. Transplantation Proceedings 27(1): 1441–1443.

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Organ Donation: Opportunities for Action Callender CO, Hall MB, Branch D. 2001. An assessment of the effectiveness of the MOTTEP model for increasing donation rates and preventing the need for transplantation—adult findings: Program years 1998 and 1999. Seminars in Nephrology 21(4):419–428. Callender CO, Miles PV, Hall MB. 2002. National MOTTEP: Educating to prevent the need for transplantation. Ethnicity & Disease 12(Suppl 1):34–37. Callender CO, Maddox GD, Miles P. 2005. Transplantation and organ donation. In: Satcher D, Pamies RJ, eds. Multicultural Medicine and Health Disparities. New York: McGraw-Hill. Pp. 217–232. CDC (Centers for Disease Control and Prevention). 1999. Achievements in public health, 1990–1999. Morbidity and Mortality Weekly Report 48(50):1141–1147. Chouhan P, Draper H. 2003. Modified mandated choice for organ procurement. Journal of Medical Ethics 29(3):157–162. Coalition on Donation. 2006. Who We Are. [Online]. Available: http://www.shareyourlife.org/contact_who.html [accessed April 12, 2006]. Cohen C. 1992. The case for presumed consent to transplant human organs after death. Transplantation Proceedings 24(5):2168–2172. Davis RM. 1999. Meeting the demand for donor organs in the U.S. British Medical Journal 319(7222):1382–1383. DeJong W, Franz HG, Wolfe SM, Nathan H, Payne D, Reitsma W, Beasley C. 1998. Requesting organ donation: An interview study with donor and nondonor families. American Journal of Critical Care 7(1):13–23. Dennis JM, Hanson P, Hodge EE, Krom RAF, Veatch RM. 1993. An Evaluation of the Ethics of Presumed Consent and a Proposal Based on Required Response. A Report of the Presumed Consent Subcommittee of the United Network for Organ Sharing Ethics Committee. [Online]. Available: http://www.unos.org/resources/bioethics.asp?index=1 [accessed March 31, 2006]. Dhar R, Simonson I. 2003. The effect of forced choice on choice. Journal of Marketing Research XL:146–160. DHHS (U.S. Department of Health and Human Services), Office of the Assistant Secretary for Planning and Evaluation. 2000. Analysis of State Actions Regarding Donor Registries. Prepared by The Lewin Group, Inc. [Online]. Available: http://www.organdonor.gov/aspehealth.html [accessed November 2005]. DHHS, Health Resources and Services Administration. 2002a. Guidelines for Donor Registry Development Conference: Final Report. Prepared by The Lewin Group, Inc. [Online]. Available: http://www.organdonor.gov/nfdrguidelines.html [accessed April 12, 2006]. DHHS, Office of the Inspector General. 2002b. Organ Donor Registries: A Useful but Limited Tool. [Online]. Available: http://www.organdonor.gov/oigdonorregistries.pdf [accessed April 12, 2006]. DHHS. 2005a. Workplace Partnership for Life. [Online]. Available: http://www.organdonor.gov/workplace.htm [accessed March 31, 2006]. DHHS. 2005b. Decision Donation. [Online]. Available: http://www.organdonor.gov/student [accessed March 31, 2006]. Economos CD, Brownson RC, DeAngelis M, Foerster SB, Foreman CT, Gregson J, Kumanyika S, Pate RR. 2001. What lessons have been learned from other attempts to guide social change? Nutrition Reviews 59(3 Pt II):S40–S56. Eriksen M. 2005. Lessons learned from public health efforts and their relevance to preventing childhood obesity. In: Institute of Medicine. Preventing Childhood Obesity: Health in the Balance. Washington, DC: The National Academies Press. Pp. 343–375. Essebag V, Cantarovich M, Crelinsten G. 2002. Routine advance directive and organ donation questioning on admission to hospital. Annals (Royal College of Physicians and Surgeons of Canada) 35(4):225–231.

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