Barriers to Deceased Donor Procurements: The Saudi Experience

The first organ transplantation performed in Saudi Arabia was a live-donor kidney transplant in 1979. Shortly thereafter, the religious authorities approved the concept of brain death and supported the broader acceptance of organ donation. Subsequently, tissue and solid organ transplant programs have been initiated throughout the Kingdom of Saudi Arabia (KSA), offering kidney, liver, pancreas, lung, and heart transplantation.1-3 Nevertheless, deceased-organ donation rates remain low in the KSA. Several survey-based cross-sectional studies geared toward the Saudi population have been conducted to shed light on potential reasons. These studies have identified factors such as limited knowledge or unfamiliarity with the concept of brain death.4-6 Nevertheless, there remains to be a lack of a clear understanding, which could be used to improve organ donation rates. Here, we show trends of deceased donation and rates of family refusal using the Saudi Center for Organ Transplantation (SCOT) database. To further understand the intricacies that affect decisions of families, explanatory interviews were conducted with SCOT coordinators who are assigned to approach families. TRENDS OVER TIME To evaluate trends of consent and to potential barriers that may prevent organ donation, a mixed methods study design was adopted using a sequential explanatory qualitative element. This process included a retrospective review of the SCOT database (January 2014–December 2020); sociodemographic data, hospital location, cause of brain death, dates of family approach, and consent status, in addition to outcomes pertaining to organ recovery and utility, were obtained. A total of 4118 potentially brain-dead patients were reported to SCOT, averaging 588 ± 84.9 reports per year. The mean donor age was 36 ± 17.5 y, with a majority being male (75.4%). Most potential donors (84.6%) were identified in hospitals of urban cities. Nationalities of potential brain-dead patients varied widely, with 45.5% being of Saudi nationality and 14.4% being of other Arabic nationalities. The most common causes of hospital admission were cerebrovascular accidents and road traffic accidents, constituting 40.5% and 25.2%, respectively. Brain death was confirmed in 60% ± 12.3% of reported donors annually. Consents were obtained in 31.2% ± 5.7% of brain-dead donors, resulting in 27.3% ± 5% annual procurements (Figure 1).FIGURE 1.: Number of confirmed brain deaths per year reported to SCOT, consent, and organ procurement rates. The year 2020 marked a significantly lower consent rate, reaching 23.3% (P = 0.018). SCOT, Saudi Center for Organ Transplantation. Cardiac arrest before confirming the diagnosis of brain death was the most common reason for the loss of potential donors (99.4%; n = 1677/1688). After confirmation of brain death in 1773 donors, reasons for loss of potential organ donors included family refusal/failure to obtain consent in 83.4% (n = 1479), cardiac arrest in 9.4% (n = 167), advanced donor or medical contraindication including cancer in 1.1% (n = 19), medicolegal issues preventing organ donation in 0.9% (n = 15), or undeclared in 5.2% (n = 93). Factors that were associated with lower consent rates were younger age of the donor (P < 0.001); female gender (P < 0.001); Arabic nationalities, including Saudi nationality (P < 0.001); and donors located in rural hospitals (P = 0.012; Table 1). TABLE 1. - Characteristics of confirmed brain-dead donors with families approached by SCOT coordinators (2014–2020)a Variables/outcomes Consent obtained (n = 750) Consent not obtained (n = 1507) P Patient variables Age (y) 39 ± 13.8 33.9 ± 17 <0.001 Gender (n) <0.001 Male 624 (35.8) 1120 (64.2) Female 126 (24.6) 387 (75.4) Nationality (n) <0.001 Saudi 38 (4.5) 799 (95.5) Arabic, non-Saudi 59 (18.2) 265 (81.8) Non-Arabic 653 (59.6) 443 (40.4) Cause for admission <0.001 Cerebrovascular accident 398 (41.8) 557 (58.3) Road traffic accident 116 (21.8) 416 (78.2) Brain anoxia 104 (28.1) 266 (71.9) Head trauma 109 (32.7) 224 (67.3) Other causes 16 (29.6) 38 (70.3) Hospital variables Hospital region <0.001 Central 321 (29.4) 770 (70.6) Eastern 145 (35.5) 264 (64.5) Western 95 (23) 318 (77) Northern 21 (29.6) 50 (70.4) Southern 4 (9.1) 40 (90.9) Other GCC countries b 164 (71.6) 65 (28.4) Hospital setting 0.012 Urban 696 (34) 1349 (66) Rural 54 (25.5) 158 (74.5) Reporting time frames (d) Hospital admission to brain-death diagnosis 9 (3–61) 10 (4–63) 0.99 Brain-death diagnosis to outcome 3 (2–30) 11 (4–73) <0.001 Descriptive statistics are presented as numbers and (proportions) for categorical variables, and means ± standard deviations for continuous variables, or medians and (interquartiles) when the normality test was violated. Comparative statistics tests that were used are the chi-square test, the t test ANOVA, and nonparametric independent samples median test.aA total of 173 confirmed brain-dead donors had cardiac arrest before the family was approached by the SCOT coordinators. These patients were excluded from the analysis in this table.bUnder the umbrella of GCC collaboration efforts, exchange of organs with countries in the GCC is permitted.ANOVA, analysis of variance; GCC, Gulf Collaboration Council; SCOT, Saudi Center for Organ Transplantation. PRINCIPAL BARRIERS PREVENTING THE CONSENT FOR DONATION To understand reasons resulting in a lack of consent, interviews with SCOT organ donation coordinators, who are the closest contacts to the families during the decision-making process and responsible for leading discussions and obtaining consents, were performed. Understanding that their opinions are to some degree subjective, we expected to gain valuable information that may increase consent rates in the future. Between February and May 2021, all 7 identified SCOT organ donation coordinators were contacted and invited to participate; 6 coordinators were interviewed. The interview questions focused on 4 main areas: (1) events and timelines encountered from the initial family approach until a consent decision has been made; (2) events and timelines pertaining to logistics and systemic issues that may have impacted consent; (3) factors that were perceived to impact the family’s decision; (4) the impact of knowledge, religious views, and cultural background on the family’s decision. The duration of the interviews averaged 36.6 ± 15.4 min; systematic coding of the transcripts was performed by 3 independent referees, followed by thematic analysis. Overall, the interviews highlighted important insights specific to the region and the studied population (Table 2). TABLE 2. - Thematic analysis of qualitative data Themes Favorable subthemes Code n Unfavorable subthemes Code n Family/social structure Limited/unreachable family 3 Ambiguity of decision-maker 16 Desire for transfer of mortal remains a 2 Social pressure b 14 Extended families c 7 Prolonged anger/denial 7 Knowledge level Understanding/embracing brain death 12 Confusing brain death and coma 17 Higher educational status 10 Not accepting brain death concept 15 Knowing patients with end-stage organ disease 6 Negative media portrayal of the topic 1 Cultural ideas and religious beliefs Adopting the prevailing religious view regarding donation 4 Fear of body mutilation 4 Presence of odd religious opinions against donation 4 Fear of wrongdoing in withholding life support 2 Favoring immediate burial 1 Condemn female body exposure 1 ICU care characteristics Proper confirmation and communication of brain death 9 Poor/incomplete delivery of the brain-death diagnosis 10 Active management to prevent circulatory arrest 4 Hesitation to consider confirmed brain-dead patients dead 5 Trust in healthcare facility 2 Unsupportive/impatient toward the organ donation process 2 System-related issues Well-trained/charismatic coordinators 18 Length of process/unnecessary delays 11 Shortage of staff 3 Barriers related to language or distance 3 COVID-19 pandemic 2 Primary and secondary coding was performed independently. Themes were determined on the basis of the coding data.aApplies to brain-dead donors of foreign nationality.bSocial pressure is reported to increase with waiting time from confirmation of brain death.cArab populations are observed to be prone to have extended family involvement.COVD-19, coronavirus disease 2019; ICU, intensive care unit. The involvement of extended family members among large Arab families imposed unique hurdles. In many cases, there was ambiguity on the decision-maker, which led to family confusion and imposed time-sensitive social pressures resulting in decisions against donation. In fact, coordinators reported that, in many cases, consents were withdrawn when the extended family became involved. An additional important aspect seemed to point toward specific features of the intensive care unit (ICU) stay. ICU physicians did not consistently share the same views regarding organ donation or brain death with SCOT staff, complicating the consent process. In some instances, SCOT coordinators perceived hesitancy on the physician’s side to commit to the brain-death diagnosis. This manifested in poor delivery of information to the family regarding the consequences and the magnitude of the brain-death diagnosis and its synonymity with legal death. Unsurprisingly, this made it hard for families to accept subsequent requests for organ donation of their loved ones. Moreover, in some cases, there has been insufficient ICU management to maintain potential brain-dead patients leading to premature cardiac arrests before brain-death confirmation. Finally, some religious and cultural ideas were reported as a barrier to consent but were overall felt not to present a major hurdle. CURRENT STATUS AND FUTURE DIRECTIONS Over the past 7 y, national consent rates and organ donation have not seen a significant improvement in KSA. In fact, the most recent year as part of this study had the lowest registered consent rates. Although there may have been an impact by the coronavirus disease 2019 pandemic,7 consent rates averaging 33.2% of approached brain-dead donor families are mediocre at best, with a huge potential for improvement. In reviewing our data, we believe that 2 main points require immediate attention, providing the highest potential for introducing system improvements. The time from identification of potential brain-dead patients until organ procurement needs to be shorter. Our data suggest that families refusing to consent wait for a prolonged time (11 4–75 d compared with those who consent and proceed to organ donation with 3 2–27 d; P < 0.001). Prolonged wait times seem to introduce immense social pressure in addition to the stress of waiting. In fact, the noted association between increased refusal rates and longer wait times may, at least in part, be influenced by consent withdrawals. Unfortunately, the database did not allow for the objective quantification of this situation because it did not differentiate between those families who initially consented and then withdrew consent from those who refused to consent from the beginning. Hence, shortening the time will alleviate social pressure on families that are waiting and hopefully reduce the possibility of consent withdrawal. This approach may require hiring more staff, training coordinators in SCOT, and implementing processes to improve timely communication with transplant centers. In addition, it will be critically important to improve the experience of the ICU stay for families of brain-dead donors. It is crucial for the patient’s families that there is no ambiguity when communicating the diagnosis of brain death or describing the process of organ donation and the life-changing events for transplant recipients. Clear policies by donor hospitals and an intensified education of ICU doctors and nurses appear necessary. Additionally, an earlier involvement of SCOT staff starting with the identification of potential donors or establishing contact personnel in various hospitals will be necessary to ensure a sensitive yet clear and timely communication to patient’s families. Certainly, more public educational efforts on organ donation will be helpful, creating more awareness about organ donation and what this means for patients who will die without receiving a transplant. CONCLUSION Saudi Arabia remains a major regional player in organ donation and transplantation. Multiple potential barriers to deceased donation have been identified, including the lack of decision-makers in extended Arab families, lack of understanding of brain death, improper delivery of the diagnosis to families during ICU stay, and organizational shortcomings leading to a lengthy decision process in addition to some conflicting cultural and religious concepts. Tackling the identified barriers is expected to improve deceased donation rates in the KSA. ACKNOWLEDGMENTS The authors acknowledge the support of the Saudi Center of Organ Transplantation and its president at the time of this study, Dr Mohammed Al-Ghonaim, in providing the research team access to coordinators and raw data.