Factors Influencing Willingness to Donate

Multiple studies have evaluated factors that influence a person’s willingness to donate his or her own or a family member’s organs.^4–10 There are specific patient and family characteristics, beliefs, attitudes, and experiences that have been identified as positively correlated with consent to organ donation^4,6,8,11,12 (Box 24-1).

A principal limiting factor to organ donation is the low percentage of families who agree to organ donation. Several factors have been associated with refusal to donate5,^6,8,12 (Box 24-2).

Overall, there are many complex, interactive variables involved in a person’s willingness to donate. It is important for the medical team to understand how these factors may influence the organ-donation request process.

Religiosity

Religion encompasses principles and traditions that are related to God or a higher power.¹³ Most major religions support organ donation,^11,13,14 but a significant number of people cite their religious beliefs as a reason not to donate.^8,11,13,15 In particular, persons who are concerned about maintaining the body’s integrity after death and/or believe that organ transplantation is against God’s will have more negative attitudes toward organ donation.^11,13,15 Many religions consider organ donation to be an act of compassion and altruism; one that is permissible because of the life-saving potential. Although many religions encourage their members to be donors, the decision is ultimately left up to the individual.^13,14 The role of religiosity as a positive or negative influence in the organ-donation process has been explored, with many conflicting conclusions.^{8,11,13,15,16} This may be due to an incomplete understanding of the complex interactions among religion, societal norms, family dynamics, and personal organ-donation beliefs.¹³ Despite conflicting data, religion is a part of many peoples’ lives and religiosity may indeed influence perspectives on organ donation. It is essential for the medical team to understand and respect the religious beliefs of patients and families in order to provide unconditional support during the decision-making process. When appropriate, it may be helpful to encourage the involvement of a religious adviser to dispel any misconceptions.

Race and Ethnicity

Studies have shown differences in attitudes toward organ donation as well as the process itself in persons of different racial and ethnic backgrounds.^{8,11,12,15,17–19} Differences include knowing the patient’s organ-donation preferences, communication with the healthcare team, and trust in the healthcare system. Studies have shown that individuals from minority racial and/or ethnic backgrounds are less willing to donate their organs, are less likely to discuss organ donation with family members, and are less likely to carry a donor card compared with whites.^{8,11,12,17,19} In addition, minority individuals tend to have less trust in the healthcare system. For example, more minorities than whites believe that doctors will not try as hard to save a person’s life if doctors know that person is willing to be an organ donor.^12,15 Furthermore, blacks are less likely than whites to agree that doctors can be trusted to pronounce death correctly when a patient is eligible to be an organ donor.¹⁷

One study evaluating the experiences of black and white families found discrepancies in the communication process at the organ donation request. White families initiated donation discussions more often than black families. In addition, black families felt more pressure to make a decision. Although the number of total discussions was the same for black and white families, fewer donation-related topics were discussed with black families. For example, black families were less likely to have spoken with a chaplain or an organ procurement organization (OPO) representative.¹² This could have a significant impact upon the donation process because speaking to and spending more time with an OPO representative is strongly associated with families’ willingness to donate.⁵ In addition, black families were less likely to have discussed two specific issues: families are not responsible for the costs of donation, and the impact of organ donation on funeral arrangements. These discussions may help dispel misconceptions about the donation process and could affect a family’s willingness to donate.

Inconsistencies are present in the organ donation request process for individuals of different ethnic and racial backgrounds. Compared with whites, minorities may have different beliefs about organ donation based on their experiences and lack of trust in the medical system. Consequently, medical professionals need to understand these issues in order to eliminate barriers in the organ donation process for all individuals, regardless of race and ethnicity.

Parent and Adolescent Perspectives

In 2006, children under the age of 18 years made up 12% of the donor organ pool, and more than half of those were aged 11 to 17 years.³ As such, it is important for healthcare providers to appreciate the perspectives of children and their parents regarding organ donation. Studies from various countries have shown that many adolescents believe that transplantation is an acceptable practice that could provide benefit to others.^20,21

Many students are willing to donate their own organs to help others.^21–23 Students who either oppose organ donation or express discomfort with the issue do so because of distrust, lack of information, uneasiness with a body being cut up, fear of being disrespectful to the deceased, discomfort of having one’s organs in another body, and fear of not being dead.^22,23 Despite some knowledge about organ donation and transplantation, students would like to be better informed on the topic and many believe that it should be included in the school curriculum.^21–23 Consequently, many schools have established organ donation educational programs for their adolescent students, which have been met with a favorable response.^20,22–26 Furthermore, teenagers who were involved in these programs were more inclined to register as organ donors, had greater knowledge of the topic and had more positive opinions regarding organ donation than students who did not participate.^24,25

One study examined a number of domains concerning organ donation and transplantation such as knowledge, personal experience, and attitudes.⁸ Differences in ethnicity, gender, religious views, and other factors were assessed. Approximately one-fourth of students who had driver’s licenses or learner’s permits had designated themselves as organ donors. Girls were more likely than boys and white students were more likely than minority students to have signed an organ donor card. Among those who intended to be donors, only slightly more than half shared this with their family. All students had a low level of knowledge regarding organ donation, allocation, and the transplantation process. For instance, more than half of all students believed that organs are bought and sold in the United States. Nevertheless, several positive predictors of willingness to donate were identified: female gender, white ethnicity, not religious, previous organ donation discussions with family and friends, increased knowledge of organ donation and a wish to receive a transplant, if necessary.⁸

The decision to donate a family member’s organs is influenced, in part, by whether or not the decision maker is aware of the wishes of the potential organ donor.^5,7,12 Families with knowledge of the patient’s wishes are more likely to agree to donation.^5,7 However, many people do not discuss their preferences with their family and this may make the decision difficult.⁷ Although many adolescents are willing to discuss the subject with their parents,^21,22 anxiety and discomfort about death and organ donation could be a barrier to adolescent-parent communication. To address this issue, a study examined the impact of a school-based program to assist students aged 11 to 18 years in initiating organ donation discussions with their families.²⁶ Approximately one-third of students thought that the discussion went “OK” and over half believed that it “went very well.” Initiating the conversation was the most difficult aspect of the discussion for many of the students, and feelings of anxiety, discomfort, and unease were expressed. Talking about death, either one’s own or another’s was also difficult. Interestingly, a small number of parents became angry or refused to discuss the topic. Positively, the students and their parents were able to talk about things that they had never discussed before. This study illustrates barriers to communication about death and organ donation between adolescents and their parents. Despite some difficulties with these conversations, there were positive aspects, such as overall enhanced communication within the family.²⁶ Encouraging adolescents and their parents to engage in such conversations may assist families if they are ever in the position of making a decision regarding organ donation.

While there has been progress in understanding the perspectives of adolescents, there is a paucity of data regarding the meaning of organ donation in younger children. This is an important understudied area of investigation that could benefit from formal research.

In addition to children, it is important to understand the perspectives of parents. A research team conducted interviews with 74 parents who had previously been approached about donating their child’s organs.²⁷ Parental characteristics that were associated with a higher likelihood of consent included no college education, interest in organ donation for themselves, and a complete understanding of brain death. Having rapport with the person requesting the donation was also associated with a favorable decision. With regard to communication, parents were more likely to consent to organ donation when they perceived the timing of the request to be appropriate, when they had enough time to discuss their decision with others and when there was no conflict within the family about the decision. The majority of parents were satisfied with their decision but, interestingly, 10% of those who consented to organ donation would not make the same decision again; 16 percent of those who had declined now wished that they had agreed. Thus, a parent’s decision to donate their child’s organs is influenced by a number of factors, including satisfaction with the healthcare team, requestor characteristics, and the communication process.²⁷