Heather M. Traino

Attitudes and acceptance of First Person Authorization: A national comparison of donor and nondonor families

BACKGROUND First Person Authorization (i.e., donor designation) legislation makes indicating one’s intent to be a posthumous organ donor legally binding, much like a living will or advance directive. Such legislation is the most recent in a long history of organ donation policies in the United States and has received little attention in the literature. METHODS This retrospective cohort study recruited nine US organ procurement organizations (OPOs) and their staff who make requests for organ donation as well as family decision makers approached by OPO staff about organ donation. Telephone interviews (N = 1,087) with family decision makers assessed the attitudes, perceptions, and behaviors regarding the request for organ donation of families of designated donors as compared with those of patients who did not formally designate themselves as donors. RESULTS Almost two thirds (65.7%) of the families of registered donors were aware of the decedent’s decision to register as a posthumous donor. Family decision makers who authorized donation and those of designated donors exhibited greater knowledge of organ donation and more positive attitudes than decision makers who refused to donate. Families of designated donors had more favorable perceptions of the request for organ donation and were more satisfied with both the time spent discussing donation and the request process; fewer donor designation families were surprised at the request for donation. CONCLUSION The enactment of First Person Authorization legislation increases the likelihood of familial authorization and satisfaction with the final donation outcome. As compared with other families approached about the option of organ donation, families of designated donors report having a more positive experience with the organ donation request process overall and greater comfort and satisfaction with the donation decision. LEVEL OF EVIDENCE Epidemiologic study, level II.

An Exploratory Study of Relational, Persuasive, and Nonverbal Communication in Requests for Tissue Donation

This study explores the effects of tissue requesters’ relational, persuasive, and nonverbal communication on families’ final donation decisions. One thousand sixteen (N = 1,016) requests for tissue donation were audiotaped and analyzed using the Siminoff Communication Content and Affect Program, a computer application specifically designed to code and assist with the quantitative analysis of communication data. This study supports the important role of communication strategies in health-related decision making. Families were more likely to consent to tissue donation when confirmational messages (e.g., messages that expressed validation or acceptance) or persuasive tactics such as credibility, altruism, or esteem were used during donation discussions. Consent was also more likely when family members exhibited nonverbal immediacy or disclosed private information about themselves or the patient. The results of a hierarchical log-linear regression revealed that the use of relational communication during requests directly predicted family consent. The results provide information about surrogate decision making in end-of-life situations and may be used to guide future practice in obtaining family consent to tissue donation.

Interim Results of a National Test of the Rapid Assessment of Hospital Procurement Barriers in Donation (RAPiD)

Organ donation remains a major public health challenge with over 114 000 people on the waitlist in the United States. Among other factors, extant research highlights the need to improve the identification and timely referral of potential donors by hospital healthcare providers (HCPs) to organ procurement organizations (OPOs). We implemented a national test of the Rapid Assessment of hospital Procurement barriers in Donation (RAPiD) to identify assets and barriers to the organ donation and patient referral processes; assess hospital–OPO relationships and offer tailored recommendations for improving these processes. Having partnered with seven OPOs, data were collected at 70 hospitals with high donor potential in the form of direct observations and interviews with 2358 HCPs. We found that donation attitudes and knowledge among HCPs were high, but use of standard referral criteria was lacking. Significant differences were found in the donation‐related attitudes, knowledge and behaviors of physicians and emergency department staff as compared to other staff in intensive care units with high organ donor potential. Also, while OPO staff were generally viewed positively, they were often perceived as outsiders rather than members of healthcare teams. Recommendations for improving the referral and donation processes are discussed.

A Comparison of the Request Process and Outcomes in Adult and Pediatric Organ Donation

BACKGROUND AND OBJECTIVES: Although existing studies suggest that factors affecting families’ decisions regarding pediatric organ donation mirror those for adult patients, health professionals working in this area maintain that pediatric and adult decision-makers differ in significant ways. This study compared the request process, experiences, and authorization decisions between family decision-makers (FDMs) of adult and pediatric donors and nondonors. METHODS: Perceptions of the donation request were collected via telephone interviews with 1601 FDMs approached by staff from 9 US organ procurement organizations (OPOs). Authorization regarding donation (ie, authorized/refused) was obtained from FDM reports and verified by using OPO records. Tests of association were used to estimate differences between FDMs of adult and pediatric patients. A logistic regression analysis was conducted to identify variables predicting FDM authorization. RESULTS: FDMs of children were significantly more likely to authorize donation than were FDMs of adults (89.7% vs 83.2%; χ2 = 6.2, P = .01). Differences were found between pediatric and adult families’ initial feelings toward donation, donation-related topics discussed, communication behaviors and techniques used, perceptions of the request, and receipt and preference of grief information. The likelihood of FDM authorization increased with the number of topics discussed and communication skills employed during requests. Authorization was not predicted by patient age (ie, adult versus pediatric). CONCLUSIONS: FDMs of children are willing to donate and experience no more psychological distress from the request for donation than do FDMs of adults. Communication emerged as a critical factor of family authorization, reinforcing its importance in requests for donation.

Communicating Effectively About Organ Donation: A Randomized Trial of a Behavioral Communication Intervention to Improve Discussions About Donation

Background Families’ refusal to authorize solid organ donation contributes to the organ deficit in the United States. The importance of communication to reducing refusal to requests for solid organ donation at the bedside and thus increasing the supply of transplantable organs cannot be overstated. This research compares 2 versions of an innovative communication skills training program for organ procurement organization request staff, Communicating Effectively About Donation (CEaD), designed to improve the quantity and quality of organ donation discussions with family decision makers of deceased patients. Methods We conducted a parallel group randomized controlled trial of the CEaD intervention, comparing an online only version of the training (CEaD1) with the online version bolstered with in-person practice and feedback (CEaD2). Survey and interview data were collected from 1603 family decision makers and 273 requesters to assess the impact of both versions of the CEaD on requesters’ communication skills and behaviors; the rate of family authorization to solid organ donation was obtained from administrative data provided by 9 organ procurement organizations. Results Results revealed higher rates of authorization for requesters with less tenure (78% to 89%, P < 0.03) for both versions; however, CEaD1 also increased authorization rates for requesters with 3 or more years of experience (89% to 92%, P < 0.03). Both conditions resulted in an improvement in overall communication quality. Conclusions We conclude that the CEaD was effective in improving requesters’ communication skills, rates of family authorization to organ donation, and the overall quality of the donation experience.

Consenting to donation: an examination of current practices in informed consent for tissue donation in the US

Informed consent is the primary moral principle guiding the donation of human tissue for transplant purposes. When patients’ donation wishes are not known, family members making the decision about tissue donation should be provided with requisite information needed to make informed donation decisions. Using a unique dataset of 1,016 audiotaped requests for tissue obtained from 15 US tissue banking organizations, we examined whether the information provided to families considering tissue donation met current standards for informed consent. The results indicated that many elements of informed consent were missing from the donation discussions, including the timeframe for procurement, autopsy issues, the involvement of both for-profit and nonprofit organizations, and the processing, storage and distribution of donated tissue. A multiple linear regression analysis also revealed that nonwhites and family members of increased age received less information regarding tissue donation than did younger, white decision makers. Recommendations for improving the practice of obtaining consent to tissue donation are provided.

Family decision maker perspectives on the return of genetic results in biobanking research

Purpose:There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants.Methods:Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55).Results:Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them.Conclusion:FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.Genet Med 18 1, 82–88.

A Comparison of Request Process and Outcomes in Donation After Cardiac Death and Donation After Brain Death: Results From a National Study

Available literature points to healthcare providers’ discomfort with donation after cardiac death (DCD) and their perception of public reluctance toward the procedure. Using a national sample, we report on the communication content of actual DCD and donation after brain death (DBD) approaches by organ procurement organization (OPO) requesters and compare family decision makers’ (FDMs’) experiences of both modalities. We recruited 1601 FDMs using a validated protocol; 347 (21.7%) were of potential DCD donors. Semistructured telephone interviews yielded FDMs’ sociodemographic data, donation attitudes, assessment of approach, final outcomes, and substantiating reasons. Initial analysis consisted of bivariate analyses. Multilevel mixture models compared groups representing authorization outcome and DCD/DBD status. No significant differences in family authorization were found between DCD and DBD cases. Statistically significant associations were found between sociodemographic characteristics and authorization, with white FDMs more likely to authorize DCD or DBD than black FDMs. FDMs of both modalities had similar evaluations of requester skills, topics discussed, satisfaction, and refusal reasons. The findings suggest that the DCD/DBD distinction may not be notable to families. We recommend the use of similar approach strategies and communication skills and the development of education campaigns about the publics acceptance of DCD.

Living Kidney Donors' Information Needs and Preferences.

Introduction: Past research suggests the information exchanged from transplant centers to potential living kidney donors is, in many cases, suboptimal. The purpose of this study was to assess donors’ perceptions of the information provided while considering living donation. Methods: Semistructured telephone interviews conducted with 81 past living donors seen at 1 mid-Atlantic transplant center assessed the extent to which living kidney donors deemed Centers for Medicare and Medicaid Services (CMS)-mandated information useful to making a decision about donation and to which more information was or would have been desired before donating. Understanding of and satisfaction with the information was also assessed. Results: Participants were primarily white (67.9%), females (67.9%), with an average age of 57.8 years. Perceived usefulness ranged from a mean of 3.1 for the confidentiality of the transplant center’s communication to 4.1 for postoperative care and short-term medical risks of donation. Donors of minority descent as well as those with more education and less income found the information provided most useful. Few donors desired additional information about the right to opt out of (8.6%) or decline (13.6%) donation; however, most wanted more information regarding the risk of being refused health, disability and/or life insurance after donating (77.8%), and insurance coverage for future health problems (66.7%). Discussion: This study revealed limited usefulness of certain CMS-mandated topics and a desire for additional information about donation. Efforts to standardize the informed consent process should incorporate donors’ perspectives as to the specific topics, quantity of information, and the mode of communication found most useful when considering living donation.

Communicating About Choices in Transplantation (COACH): Results of a Pilot Test Using Matched Controls

Introduction: Previous research highlights the difficulties patients with end-stage renal disease awaiting kidney transplant experience while attempting to manage both the logistical and the content-related aspects of discussions about transplantation. This article presents pilot results of the behavioral communication intervention program, Communicating about Choices in Transplantation (COACH), designed to improve transplant candidates’ communication about transplantation. Research Questions: As compared to matched controls, increases in knowledge of deceased and living donor transplantation, communication self-efficacy, intentions to hold conversations about transplantation, and self-reported discussion were expected for pilot participants from pre- and postassessment; decreases in conversational difficulties were also posited. Design: Using a nonrandomized quasi-experimental design, we compared transplant knowledge and communication between patients completing a 2-hour COACH session (pilot sample) to a sample of matched controls (n = 10). Data were collected via semi-structured telephone interviews upon enrollment and 1 month after enrollment or attendance at a COACH program session. Results: The results revealed significant differences in knowledge from pre- to postassessment between the pilot and control samples (P = .02). Although no other statistically significant between-group differences were found, paired-sample t tests revealed significant pre–post increases in transplant knowledge (7.6 [standard deviation, SD = 2.0] to 9.5 [SD =1.8]; P = .05) and communication self-efficacy (1255.8 [SD = 239.7] to 1513.8 [SD = 114.3]; P = .009) for pilot participants. Decreases in perceived conversational difficulties were also observed (P = .53). Discussion: Results provide preliminary support for the program’s impact. Moreover, participant evaluations of the COACH were overwhelmingly positive. A more definitive program evaluation with a larger, more diverse sample is currently underway.