The Role of Women in the Donation Consent Decision: Building on Previous Research

By Dodd-McCue, Diane Tartaglia, Alexander; Cowherd, Robin

Background- Recently published findings emphasize the dominant role of women in the donation discussion. With some noteworthy exceptions, the empirical literature on gender and donation, and the role of gender in healthcare decisions as well as donation, is limited. Objectives- To provide preliminary information needed to begin theoretical or framework development and to initiate more rigorous research on the role of gender in donation discussions.

Design- This exploratory study is a descriptive qualitative retrospective study using focus group methodology.

Setting and Participants- Two focus groups were conducted in 2 major cities in the organ procurement organization’s service area. Participants were women who were involved in the donation discussion within the past 5 years; 6 participated in 1 session, 8 in the other.

Results – The focus group discussions highlight the role of women in the donation process relative to information needs, information usage, and the ensuring dynamics of the donation discussion. Compared to men, women tend to seek more information and reframe this information for others. Because women are frequently central in family communication networks, they serve as a communication conduit for other family members and may influence others.

Conclusions- Involving key women decision makers in the early stages of the donation discussion and providing information elaboration build on women’s central placement and role in family communication network processes. The significance of women’s central placement may carry cultural implications, particularly for racial or ethnic groups with strong matriarchal or extended kinship structures. (Progress in Transplantation. 2007;17:209-214)

Recent findings1 point to the dominant role of women in the donation discussion. A review of an academic medical center’s potential donor cases from April 1997 through June 2004 found that women (mothers, wives, daughters, sisters) were the primary decision makers in 76% of all (N = 115) consent cases. When multiple decision makers were involved, the donors’ mothers were still actively involved in the consent discussions in the majority (62%) of cases. A random sample of cases not resulting in donation from this same period (N = 122) found similar patterns, with mothers the dominant decision maker 67% of the time.

Interviews with organ procurement organization (OPO) and healthcare professionals involved in family support and donation discussion at several transplant centers suggest these empirical findings support their observations about the role of women. Mirroring these discussions are the patterns emerging from a statewide online donation registry launched in the OPO’s service area in 2003: more than 75% of those signing up online are women.

To date the empirical literature on gender and donation, and the role of gender in healthcare decisions relating to donation, is limited. Noteworthy are findings by Siminoff et al2,3 on the demographic characteristics of next-of-kin gender, which suggest that family characteristics (ie, age, gender, education) may affect the relationship between timing of request and the request decision. Both studies found that family decision makers were predominantly women (66.4% in the 2001 study,2 65.2% in the 2002 study3). To date, gender has not been the primary focus of exploratory research, with the exception of a recent study4 on high school students’ willingness to donate, and no consensus framework for examining the role of gender in donation decisions has evolved. However, the evidence from these potential donor cases and the registry results suggest much may be learned from filling this void.

Literature Review

The literature on gender and decision making relative to healthcare fails to support providers’ informal observations about women’s dominant role. Descriptive research outside of the organ donation area provides some insights on gender-specific decision making relative to specific diagnoses and specific healthcare needs, but no theoretical framework or methodology unites this research. In addition, there is no consensus on whether there are gender differences relative to healthcare decisions.

An Australian study by Parslow et al5 failed to support the hypothesis that, in choosing to obtain medical care, women are more strongly influenced by non-health factors compared to men. Although this was not directly measured in their study, the authors suggested that women and men may use similar factors, not dissimilar factors, in arriving at healthcare decisions. Hembroff et al,6 in a study evaluating the effect of relative and absolute risk information on patient decision making, found no gender differences and concluded that a standard strategy of presenting absolute risk information may improve patient decision making, regardless of patient gender. Most recently Snipes et al,7 in a study of information search in healthcare decisions (with emphasis on word-of-mouth and Internet information), found no significant gender differences in information search behavior, although differences based on marital status, age, income, and education level were found.

Stewart et al,8 in a study of patients recovering from an acute ischemic coronary event, found that women reported receiving much less information than they wanted from all health professionals, although both men and women preferred a shared or autonomous treatment decision-making role with their physicians. Similarly Kapral et al,9 in a study of patients with a history of cerebrovascular disease, found that compared to men, women were less confident in their treatment decisions, more risk adverse, and would have preferred more information to assist them in their decision making. Salkeld et al,10 in a study of patients with colorectal cancer, found that 50% of the women preferred a shared decision- making role on their treatment, compared with 36% of men.

Although existing research explores gender-specific decision making in other healthcare contexts, with one recent exception,4 there are no studies on gender and organ donation. Thornton et al,4 examining ethnic and gender differences in high school students’ willingness to donate, found girls more willing to donate than boys (56% compared to 44%). To date the existing literature offers no consensus about gender-specific decision-making processes or clear guidance on possible application to the organ donation decision arena. This exploratory study provides preliminary information needed to begin theoretical or framework development and to initiate more rigorous measurement of key concepts related to the role of gender in donation discussions.

Methods

Given its exploratory nature, this study is descriptive rather than theoretical. This nonexperimental retrospective study uses focus groups, a qualitative data collection methodology suitable for identifying participants’ perceptions of shared context-specific experiences.11 Participants were recruited using study announcements mailed to 197 women who were listed as members of donor families who had directly received information or services from the OPO’s family support staff within the past 5 years. The mailings were sent 60 days before the scheduled focus groups, and those interested were asked to contact the research coordinator within 10 days.

Of the total number contacted, 15 women responded with their willingness and availability to participate in one of the 2 focus groups, with the sites in 2 major cities serviced by the OPO. All 15 participants signed and returned consent forms to the researcher. This allowed for an acceptable size for each focus group, on the basis of recommended maximum size of 8 to 10 participants for focus groups when in-depth probing of responses is desired.12 As noted in the announcement, the participants would receive nominal reimbursement for their participation, a box lunch, and a $40 gift certificate to a national discount retailer. Institutional review board approval was granted before the initiation of this study.

The focus group sessions addressed the research questions (Table) with respect to identifying information with practical significance to requestors, professionals providing family support, and hospital development/staff training. The focus group questions were developed by the authors, medical center chaplains, and OPO donor family counselors. The questions, which were reviewed by the institutional review board, were piloted using a group of hospital chaplains and OPO professionals who had not been involved in question development. The questions, provided in the Table, illustrate the researcher/ facilitator’s desired discussion thread, although the discussion was also influenced by the spontaneous nature of focus group interaction. The focus group questions were intentionally crafted to retain emphasis on participants’ perceptions of the rationale and dynamics underlying the donation decision process as they experienced it.

The focus group sessions averaged 120 minutes each and were facilitated by one of the authors (D.D.M.). Concise field notes by the facilitator were taken during the focus groups to note important points or record participant statements verbatim, the context of the statements, the dynamics of the discussion, nonverbal cues, and analytical or methodological issues that warranted review by the research team. Discussion data from each of the 2 focus groups were transcribed and the results reviewed multiple times to establish familiarity with the data. These reports were then analyzed using a comparative, thematic approach focusing on the detection of similarities and differences. Themes reflected a group perspective arising spontaneously and in response to specific questions. Analysis was guided by the issues raised by the research questions, the findings of previous research outside of the donation area, and the themes identified by the “expert” voices of donor family support staff and hospital chaplains involved in donation cases. The rigor of this qualitative research is demonstrated by its trustworthiness, specifically its dependability, confirmability, and credibility. The use of a uniform recruitment and selection process, a common focus group facilitator, uniform questions guiding the sessions, and similar time and setting for each session promote dependability. Confirmability is enhanced by the use of experts in the area of organ donation to assist in analyzing the results and identifying emerging themes. Data triangulation, shown in this study by efforts to record participants’ spoken responses and body language, serves to strengthen study credibility.

Results

Two focus groups were conducted in a private conference room at the OPO’s offices in 2 major cities within its service area, with a donor family support counselor available on-site in the event participants desired their support. Fourteen of the 15 women who consented to participate in the focus groups attended. The focus groups were conducted on 2 nonconsecutive nights of the same week. At both sessions participants had the opportunity to talk with the family support counselor after the session concluded.

Participants

Fourteen women participated in this study: 6 women attended 1 group session, 8 women the other. The majority of women participating in the 2 focus groups were white (13 participants), either the mothers (6 participants) or wives (5 participants) of donors, and 50 years or older (8 participants). The composition of the 2 focus groups was similar in terms of race, relationship to the donor, and age. Eight of the participants were designated donors before this family crisis, among them 3 healthcare professionals, 1 the mother of a transplant recipient, and others informed about donation through church and community education efforts. Although these women had previously made this personal decision for themselves, many had not previously shared this decision with others.

Donor deaths ranged from almost 5 years ago to as recently as 6 months ago. In the majority of cases the cause of donor death was nonviolent and donors had acknowledged their intent to donate. The 2 focus groups had 1 noteworthy difference: all 3 violent deaths (gunshot wounds) were represented in 1 focus group. On the basis of family recollections, declaration of grave prognosis was within 12 to 24 hours of hospital admission in all 14 cases. Most of the participants recalled that brain death declaration and approach occurred within what they referred to as a “short” (undefined in hours) timeframe, although hospital variations relating to the time required to conduct brain death testing were noted. State law requires 2 brain death tests for declaration of brain death, and the amount of time between these 2 tests is a function of hospital staffing patterns. As a result, the time between the 2 tests is usually shorter at academic medical centers compared to community hospitals.

Themes

Three themes were identified in the analysis. Each theme emerged at different points throughout the focus group sessions and were emphasized by multiple participants.

Theme 1: We Ask Questions. Several of the focus group participants suggested that, compared to men, women in decision- making situations may ask more questions and more actively pursue additional information. “We ask questions- lots of questions! We ask more than men- and we get answers. Information helps us and then we can tell everyone else about this [donation options].” Another participant said, “We explore all avenues.”

As one women elaborated: “Ever hear a man say, Tm lost’? Never. Same thing with donation- they [men] want to act like they understand and they just want the answer [final decision].” Another thought that women seek more information because “women deal with the uncontrollable” whereas “men have just got to ‘fix it.’” Others thought that “men don’t like elaboration, women do.” The participants suggested that women, by adding more dimensions to the decision-making context, are increasing their alternatives for framing their communication to others. The participants observed that this, in turn, may result in added opportunities for them to influence others’ decisions.

In some cases, the information sought by the participants focused on the clinical treatment being provided to the donor, with assurances from medical staff that every effort to maintain the patient was being employed according to the wishes of the designated decision maker. They also felt reassured by the presence of a support network, including a chaplain, which was comforting and helpful to the participants in gaining support for donation from other family members. Others, concerned about potentially different levels of care for donors compared to nondonors, found efforts by medical staff to explain the degree of medical care being provided to their loved one enlightening. One woman commented that she had advised other family members that those who are organ donors are receiving exemplary care because “if you don’t make it, what might be a gift to others isn’t if the hospital didn’t do its all.”

One focus group participant emphasized the negative impact of incomplete or delayed medical information provided in response to her questions. Although she and her sons were in consensus that her husband would be a donor, medical staff was not always accessible, the patient’s prognosis was not clearly communicated to them, and the flow of clinical information during his hospitalization was limited. As a result, the family had been focusing on rehabilitation options and was not aware that the donation discussion was imminent. In this case, the transplant coordinator “was the first person to really explain to me what had happened, after I’d been sitting in the waiting room all those days.”

The participants also observed that, compared to men, they thought women may ask more questions because they place greater importance on the decision-making process, whereas men emphasize the decision-making outcome. The participants mentioned that they thought men, compared to women, had a greater need for closure and closure within a shorter time-frame. Several participants thought men were less apt to acquire additional information when making the donation decision because they may seek more immediate solutions than women. As one noted, “Maybe women jump ahead to something beyond the present, to find something positive.” Another observed that women are “trying to be strong, piece by piece” during the donation discussion, and “confront the situation.” In contrast, “men may just try to avoid it.” Added another: “We [women] just do more processing!”

Theme 2: Knowledge Is Power. The participants, in sharing their donation discussion experiences, emphasized the extent to which the content of information set the stage for the family discussion of donation. Information content fell into 3 content areas: information that served as the basis of their personal decision to donate, information of the loved ones’ designation to donate, and the information conveyed by medical professionals during this medical crisis.

One participant, the mother of a teenage donor, said she had always told her children she was a donor but had never broached the subject of their donation with them. When she was informed of her child’s grave prognosis, she was preparing to “sell” the idea to her other children, only to find this child-a new driver-had indicated a donation preference “by a heart” on his driver’s license. “It really made me proud and he went on to be a 7 organ donor,” referring to the fact that the maximum number of organs available for donation were medically suitable and transplanted. She also said she was “flabbergasted” to discover that all 3 of her remaining sons were already organ donors: “My babies want to do good and have good hearts…. I’m proud they did it all themselves.”

Organ donation in the United States is an opt-in system, with potential donors required to take specific actions to legally acknowledge their wishes. Donor designation is demonstrated in the state in which this study was conducted through registration notation on drivers’ licenses, donor cards, and, more recently, the statewide donor registry. State law strictly endorses donor rights, with families notified of their loved one’s donation decision.13 In 6 of 14 cases represented in the focus groups, the loved one was a designated donor. Donor designation served as a foundation for the donation discussion with others, even though several of these women admitted they had not previously given donation serious thought or, in one case, had openly objected to it. Donor designation provided them the impetus to advocate donation or secure the support for donation from other family members.

One woman, the wife of a designated donor, suggested that he had “probably told me and I really didn’t listen…. At the time [of the medical crisis] I wasn’t sure what I would do. I don’t think I was thinking about donation. But it was all about him. He’d made this decision.” When other family members questioned the donation decision, she told them that his wish was his legacy. However, she admitted that she “couldn’t be an advocate [for donation] with the kids without knowing what he wanted.” Three other participants acknowledged similar situations in which their knowledge of the donor’s wishes had been instrumental to them in securing the support of other family members, particularly in cases of stepchildren. Several of the women participating in the focus groups also reflected upon the importance of previous discussions of donation, both positive and negative, and the impact of these discussions during this medical crisis. One woman, a sister of a donor, recalled a positive discussion of donation by her family: “We’d [the family] talked about organ donation the year before at our family Thanksgiving dinner. I don’t know why we’d talked about donating organs then, but we did. Now I think there was a reason and we were supposed to…. It seemed like everyone remembered Thanksgiving at the same time and brought it up. And what he [the donor] said…. After we did, things went smoothly.”

Another participant related a negative discussion of donation with her spouse. When her husband had advised her of his decision to become a designated donor, she “screamed at him and he stormed out.” The following day she reluctantly told him that “whatever you need to do [to donate] you need to do.” She later learned that her husband had become a donor after a “heart to heart” with his own father, sharing with him that “even if it makes her [the wife] mad, it’s the right thing to do because I got a second chance [as a recovering alcoholic].” Knowing not only her husband’s decision to donate, but the degree of thought that went into his decision, made it easier for her to discuss donation with other family members.

Theme 3: Don’t Mess With Mom. The participants stressed that once they had made the decision to consent to donation or were aware of their loved one’s wishes they became strong advocates during their family discussion. In cases of donor registration, only restating this information to others was necessary (“He has a heart on his driver’s license so we all understand his wish”). In other cases, when other family members were uncertain about whether to donate, consensus evolved when at least 1 other party to the discussion (in addition to the focus group participant) supported the donation decision.

Regardless of the degree of perceived family resistance, mothers appear to wield stronger influence than do other family members. One woman recalled that at the time she was informed of her son’s grave prognosis, she focused on the donation decision while the rest of the family awaited her call, allowing her to be the final decision maker. “No one would mess with me. My family let me do this. It was amazing because I knew this was the ‘right outcome.’” Once she told her family “we are going to do this [donate], that was that.”

Another focus group participant faced resistance. “My husband was not crazy about this [donation]…. He didn’t want him [their son] cut on.” However, the mother was adamant about her decision, stating, “I’m the medical person and the decision maker.” Her knowledge of the shortage of “well matched” organs from African Americans led her to remind her husband, a dialysis patient, that “someone would give you this [a donated organ]” and “we need to give someone else that opportunity today.”

As one focus group member suggested, mothers may be more influential in the donation decision because “it is a female maternal instinct” to make this decision. She observed that, relative to all family relationships, mothers may command more influence because they are more actively involved with their children, and carrying a child is about giving life (similar to organ donation). She implied that a sense of nurturing and responsibility is translated into what mothers think their children would want or what would help their children “live on” through the recipients. Others acknowledged that mothers “know how precious life is and how fast it can be taken away.”

Discussion

The focus group sessions highlight the role of women in the donation process relative to information needs, information usage, and the ensuing dynamics of the donation discussion. Previous research14-16 emphasizes the information needs for families in potential organ donation cases, particularly with regard to information content. These results point to the benefits of specific information in the communication process, by supporting the advocacy role women may assume in family discussions of organ donation.

The participants in this study contend that they think women seek significantly more information about organ donation than men in formulating their decision about donation, a function of their efforts to understand a complex situation. Subsequently, this expanded body of knowledge may provide women with greater opportunities to uniquely frame the discussion for others, and to possibly influence others’ perspectives on the donation decision.

In light of family dynamics, the focus group results also suggest that women are influential in the donation discussion because of their relationship to the donor and/or others, as well as because of the closeness of these relationships. Consequently, women are central in the family communication process because of their level of connectedness, and family members rely on these women to serve as the communication conduit to other family members. Relative to the social analysis of communication networks,17 the findings suggest that women, by possessing this wealth of information, may be more influential in family discussions of organ donation because of their network centrality. According to network analysis, those who possess key information critical to the decision-making context will become central in communication flows and will exert more influence on others compared with those who do not possess this relevant information.

The significance of this central placement of women in family communications may be further exaggerated in a matriarchal family structure and may carry cultural implications, particularly for African American families. Previous research18,19 suggests that African American families are characterized by strong kinship networks with multiple extended family members. At times of critical life events, these kinship networks emphasize intergenerational values, the emotional need to belong and remain connected, and family loyalty trumping individual need.20

Women, by holding tacit responsibility for leadership in major decisions such as donation, face a difficult challenge: arriving at a consensus decision while maintaining family harmony and stability. Isolating next-of-kin decision makers from the larger group of extended family members, a common practice during the organ donation process, may limit the key decision makers’ access to the family support network, limit their efforts to communicate key information to others, and hinder efforts to maintain family harmony and stability. If so, understanding complex, culturally diverse family structures and the role of women within those systems is a critical competency for OPO coordinators and hospital support personnel.

Conclusion

This study is an exploratory effort to improve understanding and practice in light of the unique role of women in the donation process. One recommendation for transplant coordinators, family services support, and hospital staff is to recognize the importance of providing critical information regarding options, with special attention to key women decision makers. These finding suggest that, as the conversation moves from grave prognosis to donation, the requester monitor the family’s understanding of grave prognosis and gender dynamics. By seeking elaboration, women may be the most informed decision makers and may more likely represent the family’s interest. This recommendation does not translate into ignoring men in the donation discussion; instead, it recognizes the role women play in providing information and elaboration to other family members-both men and women-during the donation discussions.

The experiences shared by the participants in this study affirm the theoretical underpinnings of family communication coordination protocol. The protocol employs established best practices, which include providing critical decision makers with accurate and timely information early in the process and monitoring the information needs of decision makers.21 As this study suggests, these coordination needs apply , in particular, to women given their dominant role in these discussions.

Acknowledgments

This study was supported by a grant from NATCO, The Organization for Transplant Coordinators. Its contents are solely the responsibility of the grantees and do not necessarily represent the official views of NATCO.

The authors wish to thank the women who graciously shared their experiences.

Table Focus group questions(a)

What role did you play in the donation decision?

Do you think women are in a unique position during the donation discussion process? Why or why not?

How can organ donation requestors use the information you have shared to guide the donation discussion?

How can professionals providing family support use this information to guide the donation discussion?

a Focus group questions were included in the institutional review board proposal, which was approved before data collection.

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17. Knoke D, Kuklinski JH. Network Analysis: Quantitative Application in the Social Sciences. Thousand Oaks, CA: Sage Publications; 1982.

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19. Boyd-Franklin N. Black Families in Therapy: A Multisystems Approach. New York, NY: Guilford Press; 1989.

20. Watson M. African American sibling relationships. In: McGoldrick M, ed. Re-visioning Family Therapy: Race, Culture, and Gender in Clinical Practice. New York, NY: Guilford Press; 1998:282- 294.

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Diane Dodd-McCue, DBA, Alexander Tartaglia, DMin, Robin Cowherd, MPA

Virginia Commonwealth University,

Richmond, VA (DD-M, AT), LifeNet,

Virginia Beach, VA (RC)

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