Alleviating the emotional burden on families during organ donation requests in neurologic patients declared with brain death: the role of timing and circumstances of death

Abstract

Organ donation requests to families often occur during moments of profound grief and create an emotional burden that is compounded by the varying emotional responses to circumstances surrounding death. These responses, in turn, interact with the timing of the request to influence authorization decisions. Understanding the interplay between timing and circumstances of death is crucial for improving authorization rates and addressing the organ donor shortage. The Organ Retrieval and Collection of Health Information for Donation database was used to identify 3,289 potential donors with neurologic mechanisms of brain death. Multivariate logistic regression with interaction between timing and circumstance was used to estimate authorization rates. Results show no significant differences in authorization for requests made within 12 h of death, regardless of circumstance. However, significant differences in authorization were observed between requests made at the time of brain death and those made 12 or more hours later for natural causes, as well as those at 24 or more hours for homicide, motor vehicle accidents, and non-motor vehicle accidents. These findings indicate that the optimal timing for organ donation requests may depend on the emotional intensity of the situation. While quicker requests may be more effective in less emotionally charged cases, extending the time for families to grieve in highly distressing circumstances does not appear to negatively impact authorization rates. Tailoring the timing of donation requests to the circumstances of death, balancing sensitivity with the need for prompt decision-making, could reduce families' emotional burden, ease pressure in decision-making, and help address the shortage of organ donors.

Text box 1. Contributions to the literature
• Limited evidence exists on how the varying emotional responses of families of neurologic patients with brain death influence their decisions to authorize organ donation.
• Families’ emotional responses vary depending on the circumstances of death, including homicide, suicide, motor vehicle accident, non-motor vehicle accident, and natural causes.
• A thoughtfully timed approach is essential for optimizing organ donation authorization rates while alleviating the emotional burden on families.

Introduction

Organ transplantation saves thousands of lives, alleviates end-stage organ failure, and improves recipients' quality of life [1,2,3]. However, in the United States, there are currently over 100,000 patients on the waitlist to receive an organ transplant and roughly 7,500 patients die each year while waiting for a transplant [4, 5]. The U.S. organ donation system operates under an opt-in model, which provides two primary pathways for donation. The first and most direct path is through donor registries, where individuals provide legally binding consent for organ donation upon their death—decisions that families cannot override [6]. The second pathway relies on surrogate authorization, in which families are asked to approve donation on behalf of a deceased individual who was not a registered donor. Securing family authorization, however, presents a significant challenge and remains one of the major barriers to increasing organ donation rates [5, 7, 8]. As such, ameliorating organ donation rates is not only a clinical imperative but also an essential public health objective.

The process of organ donation is managed by organ procurement organizations (OPOs) that receive referrals from hospitals within their regional boundaries (donor-service areas; DSAs) [9]. In the United States, federal law mandates that potential donors are referred to an OPO when they are either nearing the end-of-life or have already been declared dead, attributed to either extensive irreversible brain damage (brain death) or electrical disturbances of the heart that prevent it from pumping blood (circulatory death) [10,11,12]. The OPO then determines organ donation eligibility for each referral based on medical criteria. If a referral is deemed suitable, an OPO representative or a member of the medical staff approach the family to seek authorization for organ donation. Federal regulations require that only OPO staff or physicians with certified training make this request and that they do so with discretion and sensitivity, respecting the circumstances, views, and beliefs of potential donor families [13].

In general, the authorization rate following approach by an OPO representative varies by DSA and prior research has determined ranges between 63.5% and 89.5% [14]. Factors influencing authorization encompass a variety of elements including clinical characteristics, procedures, and health outcomes of the potential donor–such as age, race, creatinine levels at the time of death, completion of apnea testing, and the presence of diabetes insipidus [15]. Beyond medical factors, family dynamics also play a crucial role. Many families decline donation due to time constraints, internal disagreements, or uncertainty about the deceased’s wishes [16,17,18]. Additionally, characteristics of the next-of-kin such as their beliefs on organ donation as well as characteristics of the OPO representative (e.g., gender) play a role in authorization rates [19, 20].

Beyond these clinical and demographic factors, the emotional and social context in which families are approached plays a critical role in authorization decisions. Requests for organ donation often occur during moments of profound grief, under distressing circumstances, and within a limited timeframe. Before organ donation can be considered, families must first either accept the declaration of brain death (in the case of donation after brain death) or recognize that continued medical care is no longer beneficial (in the case of donation after circulatory death) [21,22,23,24]. In the case of brain death, acceptance can be particularly challenging because the continued respiratory and cardiac functions may lead the family to perceive the person as still alive, further complicating their emotional response and hindering their ability to accept death. Adding to this complexity, families are often approached before they have had the opportunity to confer with other relatives and friends regarding the decision, a process that is typically characterized by substantial communication and careful consideration of various perspectives and opinions [25, 26]. The deliberation of whether to donate their relatives' organs adds to families' emotional strain, particularly when they face challenges in understanding brain death or recognizing that there is a lack of treatment options [24, 26,27,28]. This strain is further heightened when there is uncertainty about the deceased’s preferences or when those preferences, if known, differ from the views of other family members [29,30,31].

The weight of this decision is compounded by the profound emotional burden families carry as they navigate the deeply personal nature of grief. Emotional responses to loss vary widely, shaped by both the circumstances of death and its suddenness [32]. The grieving process is further influenced by a complex interplay of factors, including family dynamics, cultural and religious beliefs, perceptions of the quality of care, and whether end-of-life discussions took place with the care team [33,34,35,36]. Sudden or unexpected deaths often elicit substantial psychological distress and may evoke intense grief that extends beyond sadness, frequently manifesting as anger. This anger may be especially pronounced in families of homicide victims, who may struggle with feelings of vulnerability and injustice, while those grieving a suicide may experience profound isolation [37]. Such emotional distress can have significant consequences, particularly in the context of organ donation. Anger, for instance, has been shown to diminish prosocial behaviors, making families less likely to authorize donation [38]. When anger is coupled with perceptions of inadequate medical care, families may be even more inclined to reject donation outright [31]. Moreover, when families are emotionally overwhelmed, their capacity to participate in the donation decision-making process may be impaired, prompting some to refuse in an effort to minimize additional stressors [32].

Given the variability in authorization rates, navigating these emotionally charged discussions requires careful consideration of timing—one of the most crucial and modifiable factors in the process. Thoughtful timing can help reduce emotional distress and improve authorization outcomes [39]. As grief evolves, the timing of a donation request can significantly affect families' distress and ultimately shape their decision. Research consistently shows that authorization rates are higher when the request is made separately from the initial discussion of brain death. A request made too early—such as during the initial brain death conversation or immediately after death declaration—may overwhelm families, while a delayed approach by an OPO representative is also associated with a lower chance of authorization [25, 40, 41]. This emphasizes the necessity of a carefully timed approach, ensuring that families have adequate time to process their loss before being presented with the option of organ donation.

Accordingly, optimizing organ authorization rates requires careful consideration of the circumstances surrounding death to determine the most appropriate timing for donation requests, ensuring that families are approached in a way that fosters informed and receptive decision-making. This study investigates how the timing of approach influences authorization rates for potential donors declared brain dead in neurologic settings, with a focus on the impact of varying circumstances of death. The focus on brain death stems from its status as the largest source of potential donors. Unlike circulatory death, which necessitates a rapid and complex procurement process after the heart has stopped, organ retrieval in brain death occurs while the heart is still beating, providing more time for the donation process. To minimize variability in emotional responses resulting from different causes of death, this study is further restricted to referrals with neurologic causes of death, which are typically managed within the same critical care and neurology services. Given that research suggests organ donation discussions within a supportive, family-centered environment do not impede the grieving process, it is essential to assess how strategic, well-timed approaches can foster both emotional sensitivity and higher authorization rates [42]. By exploring these factors, this study seeks to identify optimal timing approaches to improve authorization rates, alleviate families' emotional burden, and ultimately help address the ongoing organ donor shortage.

Method

Data source

Data are from the Organ Retrieval and Collection of Health Information for Donation (ORCHID), an open source, deidentified database of over 130,000 patients nearing death who have been referred to any of six OPO in the United States over a 7-year period from the years of 2015–2021 [9]. Approval for the data transfer, storage, analysis, and release of this database has been issued by the Institutional Review Board at the Massachusetts Institute of Technology (Protocol #: 2201000540A001).

Study sample

We identified an initial sample of 19,551 referrals where an OPO representative approached the patient's next of kin. While specific reasons for non-approach were unavailable, the most common reason is typically failure to meet medical criteria. We then narrowed the sample to 11,195 referrals meeting brain death criteria. From here, we identified a sample of 5,363 referrals aged 18 and older who were approached by an OPO representative within one week of brain death declaration and had known circumstances of death. The exclusion of patients under 18 was due to the different legal and medical considerations for pediatric organ donation.

Neurologic causes of death were classified by the United Network for Organ Sharing (UNOS) as head trauma, cerebrovascular accident (CVA), intracranial bleeding (ICB), intracranial hemorrhage (ICH), or subarachnoid hemorrhage (SAH), resulting in a final sample size of 3,289. See Fig. 1 for the flowchart of cohort selection.

Fig. 1

Flowchart of cohort selection for potential organ donors referred to six U.S. OPOs in the ORCHID database (2015–2021). ORCHID: Organ Retrieval and Collection of Health Information for Donation

Statistical analysis

Descriptive statistics are reported on age, gender, race, circumstance of death (homicide, motor vehicle accident, natural causes, non-motor vehicle accident, and suicide), and hours to approach by an OPO representative. Continuous variables are described using medians with interquartile ranges (IQR) and categorical variables are described using frequencies with percentages.

Variables with significant (p-value < 0.05) univariate differences between the authorize and failure to authorize groups were included in a multivariate logistic regression model along with an interaction between circumstance of death and time to approach (continuous). We estimated group differences in proportion by comparing the proportion means between circumstance of death and time of approach groups (at time of death, 0–6 h, 6–12 h, 12–24, and over 24 h). Significance was determined by the exclusion of a 0 in the 95% confidence intervals of the differences in proportion. All analyses were conducted using R version 4.2.1, an open-source statistical programming language. This study adheres to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines [43].

Results

Our sample includes 3,289 deceased referrals, of which 1,142 (34.7%) are female. The median (IQR) age was 45 (29, 57) years. Causes of death included 1,537 (46.7%) CVA/Stroke, 1,742 (53.0%) head trauma, 7 (0.2%) ICB/ICH, and 3 (0.1%) SAH. Two-thousand six-hundred thirteen (79.4%) authorizations for organ donation were obtained. Univariate analysis indicated that the group who authorized was more likely to be older (age 43 vs. 50; p-value < 0.001), male (66.2% vs. 61.8%; p-value = 0.035), and approached earlier (3 vs. 4 h; p-value < 0.001). Group differences were also seen for race, cause of death, and circumstance of death (all p-value < 0.001). Due to the high collinearity between cause and circumstance of death, we opted to include only circumstance of death in model building. Table 1 provides descriptive characteristics of the sample stratified by authorization outcome.

Table 1 Characteristics of potential donors with neurologic mechanisms of death stratified authorization outcome, from the ORCHID database (United States, 2015–2021)

Multivariate logistic regression analysis indicates that the likelihood of authorization decreases with age (OR = 0.99; 95% CI = 0.98, 0.99; p-value < 0.001) and is lower for Black / African American (OR = 0.33; 95% CI = 0.26, 0.43; p-value < 0.001), Hispanic (OR = 0.53; 95% CI = 0.42, 0.68; p-value < 0.001), and Other/Unknown (OR = 0.21; 95% CI = 0.16, 0.28; p-value < 0.001) racial or ethnic groups compared with White/Caucasian referrals (p-value < 0.001). Authorization was more likely for referrals with motor vehicle accidents (OR = 1.85; 95% CI = 1.36, 2.53; p-value < 0.001) and suicide (OR = 4.73; 95% CI = 2.41, 10.60; p-value < 0.001) circumstances of death compared to natural causes and decreased in likelihood with time to approach (OR = 0.99; 95% CI = 0.98, 1.00; p-value = 0.017). Furthermore, we found an interaction effect between time of approach and circumstance of death for motor vehicle accidents (OR = 0.98; 95% CI = 0.97, 1.00; p-value = 0.021) and suicide (OR = 0.94; 95% CI = 0.90, 0.98; p-value = 0.005). See Table 2 for details.

Table 2 Multivariate logistic regression model of organ donation authorization among potential donors with brain death due to neurologic causes, based on referrals from six U.S. OPOs (2015–2021)

Table 3 and Fig. 2 present the model’s estimated rates of authorization for organ donation over time, stratified by the circumstance of death. Suicide circumstances had the highest authorization rates across all time intervals, with 93.9% for approach at the time of death and 75.7% for approach at over than 24 h later. For all circumstances, authorization was highest when the approach occurred at the time of death. However, no significant differences were found between authorization rates for approach at the time of death and those at 6 to 12 or 12 to 24 h for any circumstance of death. Significant differences in authorization were observed for the following: (1) between approach at time of death and 12 to 24 h for referrals with natural causes of death (Diff = −5.6; 95% CI = −1.2, −9.9); and (2) between approach at time of death and over than 24 later hours for homicide (Diff = −32.6; 95% CI = −15.3, −49.8), motor vehicle accidents (Diff = −31.6; 95% CI = −17.1, −46.1), non-motor vehicle accidents (Diff = −35.2; 95% CI = −20.0, −50.4), and natural causes (Diff = −36.3; 95% CI = −23.0, −49.6).

Table 3 Proportion of organ donation authorizations by circumstance of death: Differences in proportion at different approach times after brain death declaration, based on ORCHID data from six U.S. OPOs (2015–2021)

Fig. 2

Differences in proportion of organ donation authorization by circumstance of death and time of approach, among referrals from six U.S. OPOs in the ORCHID database (2015–2021)

Discussion

Organ donation plays a central role in saving the lives of patients on the waitlist for an organ transplant. Yet, there is a persistent shortage of organ donors in the United States that is fueled by the challenges faced in obtaining family authorization. Our findings highlight the critical role of the timing of donation requests on authorization rates, particularly within the emotionally sensitive context of a potential donor’s death from neurologic causes. In line with prior research [40, 41], we observed that earlier approaches by an OPO representative are generally associated with higher authorization. Notably, our findings indicate that authorization rates did not differ significantly between immediate requests, those made within 0–6 h, and those made within 6–12 h. This suggests that in many cases, early requests—regardless of whether they occur immediately or within the first several hours following death—may be equally effective in obtaining authorization, reinforcing prior findings on the benefits of early engagement. Nonetheless, our study adds depth to this understanding by elucidating that the effect of timing in the neurologic setting is nuanced and varies by the specific circumstance of death. Our results underscore the importance of both timing and contextual sensitivity for effective donation discussions. Families grieve in different ways and experience varying emotions depending on the nature and circumstances of their loss, which can subsequently influence their response to the donation request.

The results of this study further illuminate the influence of potential donors’ circumstances of death on authorization rates. Consistent with previous research [44], authorization was highest for suicide-related referrals. This may reflect the perception of families grieving suicide that organ donation offers a meaningful way to honor the deceased or to find purpose amid tragic loss [45, 46]. Additionally, a potential donor may have expressed a wish for organ donation in their suicide note [47], which could influence family decisions. Further, individuals who die by suicide may offer a unique opportunity for organ donation. This group holds significant organ donation potential, as they are often younger, have fewer comorbidities, and are consequently able to donate a greater number of organs [48]. Taken together, our findings, in conjunction with existing literature, highlight the potential for informed clinical decision-making when considering organ donation in this sensitive and high-potential group.

In contrast, authorization rates for natural causes of death declined significantly when approach was delayed beyond 12 h. This may reflect a preference for rapid resolution in cases of anticipated death. In general, OPO representatives have noted that the length of the donation process and families' worries about their loved ones being through enough are common reasons for declining donation [49] and it’s possible that these factors may be particularly influential in cases involving natural causes of death. These concerns are especially pronounced in cases involving natural causes of death, where prolonged medical processes can heighten psychological distress for families [31]. This aligns with coping models on grief, which suggest that extended periods leading up to death can impair a family's ability to process their loss, making the decision to donate even more difficult. The lack of significant differences within the first 12 h may suggest that once a family is approached relatively early in the process, the exact timing within this window plays a less decisive role than other factors, such as the quality of communication, perceived support from medical staff, and pre-existing attitudes toward donation. This highlights the need for additional research into whether the manner of approach within these early hours—rather than simply the timing—has a greater influence on family decision-making.

Furthermore, the finding that requests made after, rather than during, brain death declaration yield similar authorization rates suggests a strategy that could ease the emotional burden on grieving families without compromising authorization rates. Families dealing with the sudden, traumatic loss of a loved one—such as from motor vehicle accidents, suicides, or homicides—often experience heightened emotional distress that is compounded by the urgency of making critical decisions about organ donation. This variability across circumstances suggests that a one-size-fits-all approach may not be appropriate when seeking organ authorization. OPO representatives could improve outcomes by tailoring the timing of their request to the specific context of each potential donor's death. Allowing families additional time after death declaration to process the loss, rather than making the request immediately, could help foster a more supportive environment for decision-making. Thoughtfully timed approaches, especially in cases of unexpected or violent deaths that evoke heightened emotional responses, provide families with the necessary space to process their grief while still ensuring timely organ retrieval. Balancing sensitivity with the need for prompt authorization is essential to alleviating the emotional burden on families, which may ultimately enhance their willingness to authorize donation.

Finally, racial and ethnic differences in authorization were evident in our study, with lower authorization likelihoods among Black/African American, Hispanic, and Other/Unknown racial and ethnic groups. This is consistent with existing literature emphasizing the barriers to organ donation within these communities and may stem from personal, cultural, or religious attitudes toward organ donation, as well as systemic racial disparities in the care system such as poor physician communication, false information, or distrust among minorities [50]. Addressing these differences may require focused outreach efforts or culturally sensitive training for OPO representatives, with the goal of fostering trust and enhancing authorization rates across racial and ethnic groups. Additionally, our study found that older age was associated with lower authorization rates, which is similarly expected. However, it is unclear whether this trend is due to potential biases among OPO representatives or clinicians, or whether it reflects families' misconceptions about the suitability of older donor organs for transplantation [50].

Limitations

While this study provides valuable insights into the timing of organ donation requests among various circumstances surrounding death and their impact on authorization rates, several limitations must be acknowledged. The ORCHID dataset, which includes data from only six OPOs, may not adequately capture regional variations in factors related to organ donation (e.g., religion and culture) across the United States, potentially limiting the generalizability of our findings.

Additionally, while our study investigates factors that may impact authorization, it does not account for all variables influencing family decisions, such as prior knowledge of the deceased’s donation preferences or their satisfaction with the healthcare team [51]. Furthermore, our study does not account for the specific reasons behind the timing of approach by an OPO representative, including reasons for delays exceeding 24 h before the request is made. Various logistical, clinical, or institutional factors may influence when families are approached, but without direct measures of these circumstances, we are unable to assess their impact on authorization outcomes. Finally, families’ emotional responses to donation requests are shaped by both pre-existing attitudes and situational stressors, including perceived quality of medical care, interactions with hospital staff, and intra-family dynamics. For instance, prior research suggests that negative perceptions of medical treatment, strained relationships among family members, or distrust in healthcare institutions can heighten emotional distress and complicate decision-making [52]. However, we do not have measures for these variables in our analysis, which may limit our ability to fully capture the complexity of family decision-making [31].

Future research could extend our findings by incorporating data from a broader range of OPOs and conducting qualitative assessments of family decision-making processes. In-depth interviews or surveys could provide insight into how families perceive the organ donation request, process their grief in relation it, and evaluate concerns about medical care quality and the timing of the request when making their decision. Additionally, exploring how healthcare teams engage with families before and during the donation request could clarify the role of trust-building strategies in improving authorization rates. Finally, the grouping of deaths into broad categories, such as natural causes, may oversimplify the heterogeneity within these events. The emotional response to a natural death likely varies depending on whether it was sudden or anticipated, yet our analysis does not account for these nuances. Differentiating between these scenarios in future studies could provide a more precise understanding of how the timing and context of the request interact with family perceptions of loss and grief.

Conclusion

Our study emphasizes the critical role of timing and contextual sensitivity in the process of organ donation requests in neurologic potential donors. Thoughtfully timed approaches, especially in cases of unexpected or traumatic deaths, can offer families the opportunity to process their grief while still ensuring timely organ retrieval. Balancing sensitivity with the need for prompt authorization is essential to alleviating the emotional burden on families, which may ultimately enhance their willingness to authorize donation. Ultimately, a more nuanced, personalized approach to donation requests holds promise for increasing authorization rates in neurologic settings and, by extension, helping address the shortage of organ donors.