Family members of critically ill patients suffer from high levels of anxiety and depression in the ICU, and are at risk of developing post-ICU syndrome following ICU discharge. In the case of brain death, and potential organ donation, the family is at the center of the decision process: within a limited time frame, the family will be informed that the patient is brain dead and will be approached about potential organ donation. Family experience with organ donation has been the topic of several research papers allowing to gain knowledge about family members' experience of organ donation, emphasizing specific needs, adequate support and pointing out gaps in current delivery of family-centered care. In this review, experts clinicians and researchers present the various legal systems regarding family implication in organ donation decisions; describe factors that influence the decision-making process; highlight family perspectives of care and respect for potential donors in the ICU environment; describe the impact of organ donation discussions and decisions on post-ICU syndrome; and suggest communication skills and support to be developed in the future. A research agenda for the next decade is also encouraged. Overall, challenges remain and concern all persons involved in the process, ICU doctors and nurses, the organ procurement organization, family members and, in some cases, the patients themselves. Looking at the big picture will provide opportunities for further improvements.

Background and objectives Living donor kidney transplantation, the treatment of choice for ESRD, is underused by women and blacks. To better understand sex differences in the context of potential barriers to living donor kidney transplantation, the Dialysis Patient Transplant Questionnaire was administered in two urban, predominantly black hemodialysis units. Results Women were less likely to want living donor kidney transplantation compared with men (58.5% versus 87.5%, P=0.003), despite being nearly two times as likely as men to receive unsolicited offers for kidney transplant (73.2% versus 43.2%, P=0.02). They were also less likely to have been evaluated for a kidney transplant (28.3% versus 52.2%, P=0.01). The multiple logistic regression analysis showed that sex was a statistically significant predictor of wanting living donor kidney transplantation (women versus men odds ratio, 0.13; 95% confidence interval, 0.04 to 0.46), controlling for various factors known to influence transplant decisions. A sensitivity analysis indicated that mode of administration did not bias these results. ConclusionsIn contrast to previous studies, the study found that black women were less likely to want living donor kidney transplantation compared with black men. Black women were also less likely to be evaluated for a kidney transplant, although they were more likely to receive an unsolicited living donor kidney transplantation offer.

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While living donor kidney transplantation (LDKT) is the treatment of choice for end-stage renal disease patients (ESRD), the potential barriers to LDKT are not well understood, especially among African American patients who have higher rates of ESRD but lower LDKT than Whites. To address this gap, a cross-sectional survey (n=101) identified LDKT experiences and attitudes among urban African American adults receiving hemodialysis at two outpatient clinics in Philadelphia. Most patients (72.3%) were interested in LDKT but only 34.2% had asked someone for a donation. Concerns about the donor (33.3%), asking for a kidney (28.1%), and their own health (24.6%) were major barriers. Patients also expressed guilt (56.3%) and fear (37.2%). About half (49.5%) had an unsolicited offer, regardless of whether or not they asked. The survey results suggest that interventions should focus on overcoming reluctance to ask for a kidney donation or to accept unsolicited offers.