American Journal of Respiratory and Critical Care Medicine

Rationale: Studies show that the quality of end-of-life communication and care have a significant impact on the living long after the death of a relative and have been implicated in the burden of psychological symptoms after the ICU experience. In the case of organ donation, the patient’s relatives are centrally involved in the decision-making process; yet, few studies have examined the impact of the quality of communication on the burden of psychological symptoms after death.

Objectives: To assess the experience of the organ donation process and grief symptoms in relatives of brain-dead patients who discussed organ donation in the ICU.

Methods: We conducted a multicenter longitudinal study in 28 ICUs in France. Participants were the relatives of brain-dead patients who were approached to discuss organ donation. Relatives were followed-up by phone at three time points: at 1 month, to complete a questionnaire describing their experience of the organ donation process; at 3 months, to complete the Hospital Anxiety and Depression Scale and the Impact of Event Scale–Revised; and at 9 months, to complete the Impact of Event Scale–Revised and the Inventory of Complicated Grief.

Measurements and Main Results: In total, 202 relatives of 202 patients were included, of whom 158 consented to and 44 refused organ donation. Interviews were conducted at 1, 3, and 9 months with 78%, 68%, and 58% of relatives, respectively. The overall experience of the organ donation process was significantly more burdensome for relatives of nondonors. They were more dissatisfied with communication (27% vs. 10%; P = 0.021), more often shocked by the request (65% vs. 19%; P < 0.0001), and more often found the decision difficult (53% vs. 27%; P = 0.017). However, there were no significant differences in grief symptoms measured at 3 and 9 months between the two groups. Understanding of brain death was associated with grief symptoms; our results show a higher prevalence of complicated grief symptoms among relatives who did not understand the brain death process than among those who did (75% vs. 46.1%; P = 0.026).

Conclusions: Experience of the organ donation process varied between relatives of donor versus nondonor patients, with relatives of nondonors experiencing lower-quality communication, but the decision was not associated with subsequent grief symptoms. Importantly, understanding of brain death is a key element of the organ donation process for relatives.

Scientific Knowledge on the Subject

In the case of potential organ donation, the family is at the center of the decision-making process. Within a limited time frame, the family will be told that the patient is brain-dead, and then they will be approached about organ donation. Studies have put forward factors related to the decision to consent to or refuse organ donation. However, only very few studies have focused on the impact of organ donation processes (i.e., being approached about organ donation, communication/interaction with the coordination team, and decision-making) on the relatives’ psychological well-being during the months after the patient’s death.

What This Study Adds to the Field

In this multicenter longitudinal study, we show that experience of organ donation processes varies between relatives of donor versus nondonor patients, the latter experiencing more difficulty and burden. However, the decision to donate (consent/refusal) is not associated with grief symptoms.

End-of-life care and communication remain with the living long after the death of a loved one and have been implicated in post-ICU burden (i.e., post-traumatic stress, anxiety and depression, and prolonged grief) (13). In the case of organ donation, the family is at the center of the decision process; within a limited time frame, the family will be told that the patient is brain-dead, and then they will be approached about organ donation.

Studies have put forward factors related to consent to organ donation, including variables existing before the request, such as patient and family demographics (47). Other factors more susceptible to modification have also been described, including timing and content of the request, sensitivity and empathy of the clinician, understanding of brain death, and the perceived quality of care of the potential donor (710). Families’ expressed reasons for consent have been reported as knowledge of the deceased’s wishes, altruism, receiving comfort from donation, and positive attitudes and beliefs about donation (5, 6, 11, 12). Reported reasons for nonconsent include lack of knowledge of the deceased’s wishes, lack of understanding of brain death, cultural and religious beliefs, the need to protect the deceased’s body from further suffering, fears of disfigurement, lack of trust and/or dissatisfaction with healthcare providers, families’ negative views on organ donation, and concerns regarding the integrity of the process (6, 7, 13).

Attention has been focused on how relatives make the decision to donate or not to donate the patient’s organs, but only very few studies have focused on comparing experiences of relatives of donor versus nondonor patients, and very few have focused on the impact of organ donation decision-making on the relatives’ psychological well-being during the months that follow the patient’s death. A qualitative study (14) has shown that relatives’ ambivalent decision-making style and perception of healthcare professionals’ behavior as “organ focused” appear to be risk factors for traumatic memories. In another qualitative study (11), clinicians’ quality of communication (quality information and ability to listen to the relatives) affected donation decision-making and appeared to impact the relatives’ grieving process.

Research needs to focus on improving relatives’ experiences of organ donation requests and decision-making and to question the potential effects of the organ request on the future psychological well-being of surviving relatives. This last question is important because many clinicians believe that organ donation requests may add burden to the grieving process, and thus they feel reluctant to initiate the discussion (15, 16). We designed a multicenter longitudinal study to assess post-ICU grief symptoms in relatives of brain-dead patients who discussed organ donation in the ICU, as well as their experience of the organ donation process and their grieving patterns.

From July 2013 to July 2014, we conducted a prospective, observational study in 28 hospitals in France. The study protocol was approved by our local institutional review board (CEERB 12-077; December 3, 2012) and by French health authorities (CNIL EGY/VCS/AR135445 and CTTIRS 13.105).

Patients

Patients were recruited in 28 ICUs. In order to be eligible, patients had to be aged 18 years and older in suspected and confirmed brain death and for whom there were no medical or legal obstacles to donation, and the relatives of the patients had to have been met by the organ donation team and to have agreed to participate in the study. Exclusion criteria were patients registered on the national refusal list and families not fluent in French.

Relatives

A single relative per patient was included. In this study, relatives were informed of the study by a nurse or a physician from the coordination team once organ donation had been discussed and the decision had been made. They were told that their decision to participate or not would have no consequences on future discussions, organ donation processes, and care for the deceased. The consent form was given to the family members, who discussed among themselves and/or with the coordination team which relative was to participate. The participating relative was informed that he/she would be called by a psychologist at 1, 3, and 9 months after the patient’s death and that he/she could interrupt participation at any time. At each call, the psychologist checked if the participant was willing to continue.

Study Outcomes

Participating relatives were followed-up by phone at three time points: 1, 3, and 9 months after the patient’s death. At 1 month, relatives completed a questionnaire describing their experiences in the ICU (see Document E1 in the online supplement), with the organ donation request, and during the decision-making process. At 3 months, relatives completed the Hospital Anxiety and Depression Scale (HADS), which measures symptoms of anxiety and depression, and the Impact of Event Scale–Revised (IES-R), which measures post-traumatic stress disorder (PTSD)-related symptoms. The HADS has been used extensively as a screening tool for anxiety and depression in clinical and nonclinical groups, as well as in hospital and nonhospital groups (17). HADS subscores higher than 8 were taken to indicate clinically meaningful symptoms of anxiety or depression (18). The IES-R (19) assesses subjective distress caused by traumatic events; it is a screening tool for PTSD symptoms. It contains subscale items on intrusion, avoidance, and hyperarousal. The IES-R is a valid and reliable scale that has been used successfully with family members of ICU patients (2, 20). IES-R scores can range from 0 (no PTSD-related symptoms) to 88 (severe PTSD-related symptoms). We used a score of 26 as the cutoff for indicating significant risk of PTSD. At 9 months, relatives completed the HADS, the IES-R, and the Inventory of Complicated Grief (ICG). The ICG measures maladaptive symptoms of loss (21) and consists of 19 first-person statements (e.g., “Ever since she died, it is hard for me to trust people”). Each item is rated from 0 (not at all) to 4 (severe), and scores higher than 25 indicate complicated grief. The ICG is a scale with demonstrated internal consistency as well as convergent and criterion validity, which makes it an easily administered assessment for symptoms of complicated grief (Figure 1). All telephone interviews were conducted by a psychologist. The data presented in the tables and figures were collected prospectively.

Statistical Analysis

Because PTSD symptoms have been reported in up to 40% of relatives of patients who died in the ICU, we sought to include 200 brain-dead patients in order to have at least 80% statistical power to detect effect sizes of at least 0.425 (moderate effect size) for relatives of patients who consented to organ donation versus those who refused. Continuous variables are described as median (interquartile range [IQR]), and categorical variables are described as proportions. To compare the characteristics of relatives of donor versus nondonor patients, Fisher’s exact tests and nonparametric Wilcoxon rank-sum tests were used. All tests were two sided, and P values less than 0.05 were considered significant. Statistical tests were performed using R version 3.3.2 software (http://cran.r-project.org/web/packages/psy/index.html). Although analysis of all the data was not complete, some of the results of this study were previously reported in the form of an abstract (22).

Between July 2013 and July 2014, 202 patients were included, whose relatives accepted organ donation in 158 cases and refused organ donation in 44 cases. Interviews were conducted with 157 (78%) relatives at 1 month, 137 (68%) at 3 months, and 117 (58%) at 9 months (Figure 2, study flowchart). Comparison of relatives who completed the follow-up with those who did not showed that there were no major differences between the two groups (see Tables E1–E3 in the online supplement).

Interviewed relatives were mainly spouses/partners (n = 70 [45%]) and adult children (n = 50 [32%]). Their median age was 52 (IQR, 42–62) years, and 41% (n = 62) were living alone. When we compared relatives of donor versus nondonor patients, we observed only one significant difference between characteristics of these two groups: More relatives of nondonor patients declared that they practiced their religion (18 [42%] vs. 23 [18%]; P = 0.008) (Table E4).

General Experience

Table 1 describes relatives’ ICU experiences of organ donation requests and decision-making. Eighty-one (52%) relatives declared that they had hope at patient admission; 132 (84%) declared that information regarding diagnosis of brain death was given by the physician; 101 (64%) recalled that the first discussion about organ donation was initiated by the ICU physician; 53 (34%) declared not having understood the concept of brain death; and half of the relatives (n = 76 [49%]) declared not knowing the patient’s wishes regarding organ donation at the time of discussion.

Table 1. Relatives’ Experiences of Organ Donation Request and Decision-Making: Relatives at the 1-Month Interview (N = 157)

ICU experience 
 Had hope at patient ICU admission81 (52%)
 Was informed that the patient was at high risk of death at admission78 (51%)
 Believed that patient’s dignity was respected141 (91%)
 Was at the patient’s bedside as much as wanted137 (88%)
 Said good-bye to the patient126 (81%)
 Was satisfied with communication134 (86%)
Experience of the request
 Reports that brain death was announced by physician132 (84%)
 Did not understand brain death53 (34%)
 Reports that organ donation was first mentioned by: 
  ICU physician101 (64%)
  Organ donation team36 (23%)
  Relative32 (20%)
 Experienced the first request as: 
  Normal113 (72%)
  Shocking44 (28%)
  Soothing16 (10%)
 Reports having discussed organ donation with ICU team (formal meetings with organ donation team excluded)91 (58%)
Experience of decision-making
 Did not know patient’s wishes concerning organ donation76 (49%)
 Experienced the decision (organ donation) as difficult50 (32%)
 What helped the relative during the decision-making process: 
  Knowing the patient’s wishes81 (52%)
  Cultural/spiritual considerations81 (52%)
  Clinicians’ support90 (57%)
 Main feeling experienced by the relative during the process: 
  Felt free to make the decision he wanted141 (90%)
  Felt unsupported by clinicians54 (34%)
  Felt under pressure from clinicians22 (14%)
 Reported conflicts: 
  With caregivers11 (7%)
  With other relatives17 (11%)
 Would have made the same decision 1 mo later132 (86%)

Data are presented as n (%).

Relatives of Nondonor versus Donor Patients
Organ donation request and process

Experience of the organ donation process was different for relatives of donor patients and those of nondonor patients (Table 2). Dissatisfaction with communication with the ICU team was significantly higher for relatives of nondonor patients (n = 8 [27%] vs. n = 13 [10%]; P = 0.021). Experience of the first request for organ donation was significantly different between the two groups: Relatives of nondonor patients more often perceived the request as “shocking” (n = 20 [65%] vs. n = 24 (19%); P < 0.0001), less often perceived it as “normal” (n = 11 [35%] vs. n = 102 [81%]; P < 0.0001), and never found it “soothing” (n = 0 vs. n = 16 [13%]; P = 0.043). Relatives of nondonor patients had significantly less knowledge of the patient’s wishes (n = 22 [73%] vs. n = 56 [45%]; P < 0.0001) and more often experienced the decision as difficult (n = 16 [53%] vs. n = 34 [27%] P = 0.017).

Table 2. Relatives’ Experiences of Organ Donation Request and Process, According to Decision to Donate or Not to Donate Organs (N = 157 Relatives at the 1-Month Interview)

 Relatives of Donor Patients (n = 126)Relatives of Nondonor Patients (n = 31)P Value
Did not understand brain death22 (18%)9 (30%)0.35
Was dissatisfied with communication with caregivers13 (10%)8 (27%)0.021
Reports that first request was made by organ donation team33 (26%)3 (10%)0.058
Experienced the first request as:   
 Normal102 (81%)11 (35%)<0.0001
 Shocking24 (19%)20 (65%)<0.0001
 Soothing16 (13%)0 (0%)0.043
Reports that ICU clinicians discussed organ donation with them79 (63%)12 (39%)0.024
Did not know patient’s wishes concerning organ donation56 (45%)22 (73%)<0.0001
Returned to the patient’s bedside after information about brain death107 (86%)30 (100%)0.025
Experienced the decision (organ donation) as difficult34 (27%)16 (53%)0.017
What helped the relative during decision-making process:   
 Knowing the patient’s wishes72 (57%)9 (29%)0.008
 Cultural/social/spiritual considerations81 (64%)0 (0%)<0.0001
 Other family members’ support0 (0%)12 (39%)<0.0001
What disturbed the relative during decision-making process:   
 Not knowing the patient’s wishes13 (10%)12 (39%)0.0004
 No support from clinicians2 (2%)6 (19%)0.0008
 Their emotions5 (4%)4 (13%)0.076
Main feeling experienced by the relative during the process:   
 Felt free to make the decision he wanted121 (96%)20 (65%)<0.0001
 Felt supported by clinicians93 (74%)10 (32%)<0.0001
 Felt under pressure by clinicians9 (7%)13 (42%)<0.0001
 Relative did not feel at ease1 (1%)3 (10%)0.025
Quality of the organ donation request and process evaluation (Likert scale)6 (6–7)6 (5–7)0.025
Felt satisfied with organ donation approach   
 At the time118 (94%)16 (55%)<0.0001
 Today116 (94%)16 (55%)<0.0001

Data are presented as n (%) or median (interquartile range).

Experience of the decision-making process was also different between the two groups. Compared with relatives of nondonor patients, relatives of donor patients more often felt helped in their decision-making by knowing the patient’s wishes (n = 9 [29%] vs. n = 72 [57%]; P = 0.008) and by referring to cultural or spiritual considerations (n = 0 vs. n = 81 [64%]; P < 0.0001). Compared with relatives of nondonor patients, relatives of donor patients were less often hindered in the decision-making process by feeling an absence of support from clinicians (n = 6 [19%] vs. n = 2 [2%]; P = 0.008). During the decision-making process, compared with relatives of nondonor patients, relatives of donor patients more often felt free to make the decision they wanted (n = 20 [65%] vs. n = 121 [96%]; P < 0.0001), more often felt supported by clinicians (n = 10 [32%] vs. n = 93 [74%]; P < 0.0001), and less often felt under pressure (n = 9 [7%] vs. n = 13 [42%]; P < 0.0001). Compared with relatives of nondonor patients, relatives of donor patients were more satisfied with the quality of the organ donation process (6 [5–7] vs. 6 [6–7] on a Likert scale; P = 0.025) and the organ donation approach (n = 16 [55%] vs. n = 118 [94%]; P < 0.0001).

Follow-up

Although experience of the organ donation process varied between relatives of donor and nondonor patients, the decision itself was not associated with grief symptoms. Indeed, there were no significant differences in symptoms measured at 3 and 9 months after the event (Table 3). At 3 months, the prevalence of symptoms of anxiety, depression, and post-traumatic stress was equivalent in both groups. At 9 months, the prevalence of symptoms of post-traumatic stress (n = 11 relatives of nondonor patients [61%] vs. n = 48 relatives of donor patients [48%]; P = 0.44) and of complicated grief (n = 12 relatives of nondonor patients [67%] vs. n = 50 relatives of donor patients [51%]; P = 0.30) was higher in relatives of nondonor patients; however, the difference was not significant.

Table 3. Grief Symptoms in Relatives, According to Decision to Donate or Not to Donate Organs

 Relatives of Donor PatientsRelatives of Nondonor PatientsP Value
At 3 mo   
 No. of relatives11522 
 HADS total score13 (9–20)13.5 (8.25–20)0.91
 Relatives with significant anxiety symptoms, score >851 (44%)8 (36%)0.49
 Relatives with significant depression symptoms, score >843 (37%)10 (45%)0.48
 IES-R total score30 (20.5–41)31.5 (11.25–34)0.31
 Relatives with significant PTSD symptoms score, IES-R score >2669 (60%)12 (54%)0.64
At 9 mo   
 No. of relatives9918 
 IES-R total score26 (12.5–38)33.5 (21.25–43.25)0.17
 Relatives with significant PTSD symptoms score, IES-R score >2648 (48%)11 (61%)0.44
 ICG total score26 (14–37.5)32.5 (17–43.25)0.11
 Relatives with significant complicated grief symptoms, ICG score >2550 (51%)12 (67%)0.30

Definition of abbreviations: HADS = Hospital Anxiety and Depression Scale; ICG = Inventory of Complicated Grief; IES-R = Impact of Event Scale–Revised; PTSD = post-traumatic stress disorder.

Data are presented as n (%) or median (interquartile range) unless indicated otherwise.

Interestingly, understanding of brain death was a factor that was significantly associated with grieving symptoms (Table 4). Indeed, relatives who did not understand brain death during the organ donation process presented a significantly higher ICG global score (median [IQR], 36 [28–43.75] vs. 23 [12.5–36.5]; P = 0.010), and the prevalence of relatives with significant complicated grief symptoms was significantly higher in the group of relatives who did not understand brain death (n = 15 [75%] vs. n = 42 [46%]; P = 0.026).

Table 4. Grief Symptoms in Relatives, According to Understanding of Brain Death

 

Brain Death Not Understood

Brain Death Understood

P Value

At 3 mo, n (N = 122)2597 
 HADS total score17 (11–20)13 (8–20)0.20
 IES-R total score32 (23–41)29 (18–39)0.58
 Relatives with significant PTSD symptoms score, IES-R score >2616 (64%)55 (57%)0.65
At 9 mo, n (N = 111)2091 
 IES-R total score31.5 (16.75–41.75)26 (13–37)0.38
 Relatives with significant PTSD symptoms score, IES-R score >2612 (60%)43 (47%)0.33
 ICG total score36 (28–43.75)23 (12.5–36.5)0.010
 Relatives with significant complicated grief symptoms, ICG score >2515 (75%)42 (46%)0.026
Brain Death Not UnderstoodBrain Death UnderstoodP Value

For definition of abbreviations, see Table 3.

Data are presented as n (%) or median (interquartile range) unless indicated otherwise.

In this study, we assessed grief symptoms in a large number of relatives of brain-dead patients for whom organ donation was discussed in the ICU. The results show that experiences of relatives of donor patients and those of nondonor patients are significantly different. Relatives of nondonor patients reported less support, both from the ICU team and during discussions with the coordination team. Compared with relatives of donor patients, they were less satisfied with communication with the ICU team and reported less communication about organ donation with the ICU clinicians. More than half of the relatives of nondonors described the decision as difficult and were dissatisfied with the process. Interestingly, the decision to consent to or to refuse organ donation was not associated with grief symptoms over the 9 months after the patient’s death. However, what was associated with grief symptoms was the understanding of brain death. Our data show that prevalence of complicated grief 9 months after the patient’s death was significantly higher in relatives who lacked such an understanding. In this observational study, it is difficult to determine the causal pathway of these associations, but our findings provide direction for future studies to improve the experiences of relatives who are asked about organ donation and potentially to increase the proportion agreeing to organ donation.

The experiences of relatives who have been through organ donation requests are important outcomes. In this study, relatives of nondonor patients seemed to have experienced more burden and less support during the process, as well as to have felt overwhelmed by their emotions, suggesting that these relatives may benefit from improved communication with ICU and organ donation teams as well as from extra counseling services. Interestingly, only 10% of these relatives reported that the first request was made by the organ donation team. Encouraging involvement of this team may be important because these clinicians receive more training in communicating effectively about organ donation and may less likely be perceived as having a conflict of interest in caring for the patient. Among relatives of nondonor patients, 65% experienced the first request as shocking, three times more than relatives of donor patients. Our data suggest that quality communication with both ICU and organ donation teams was lower for this group of relatives. A higher proportion of relatives of nondonor patients than of donor patients (30% vs. 18%) had difficulty in understanding brain death, although this difference was not statistically significant. Future studies should explore this trend and research whether lack of understanding of brain death influences the experience of the entire process, potentially increasing feelings of confusion, shock, and uncertainty. However, information and support cannot be separated (23). As suggested by Cleiren and Van Zoelen (24), rather than information in itself, it is the relational aspect of sharing information that is crucial to bereaved relatives. Quality communication includes clear, timely, and understandable information as well as empathy and support (25, 26), specifically in the dramatic context of brain death. Furthermore, once the decision has been made, relatives who refuse organ donation must not feel abandoned by the ICU team or suffer from a lack of attention that may create in them a feeling of worthlessness. Expressions of empathy are important in this situation, whatever the decision, and have been associated with higher ratings of clinician communication by relatives of patients in the ICU (27). Moreover, specific efforts should be developed for those relatives who experience the organ donation request as shocking.

An important finding in this study is that although the experience of the process was different between relatives of donor patients and relatives of nondonor patients, the decision in itself (consent vs. refusal) was not associated with grief symptoms. This result should be tempered, however, given the relatively small numbers of relatives of nondonor patients. The prevalence of anxiety, depression, PTSD, and complicated grief was similar between groups at 3 and 9 months after death. This finding must be disseminated among healthcare professionals because research has described a reluctance to request donation for fear of adding to family burden (15, 16). As shown in another follow-up study of 95 relatives divided into three categories (consent to organ donation, refusal of organ donation, and a comparison group of relatives where no donation request was made), there were no differences in levels of depression and problems with detachment from the deceased between bereaved relatives who participated in an organ donation procedure, those who refused consent, and relatives who were not approached for postmortem organ donation. However, dissatisfaction with hospital care was associated with depressive and grief symptoms (24). In a qualitative study in the pediatric context, consent or refusal of organ donation per se did not seem to affect the overall grieving process. It is the meaning attributed to the act of donation that affects how parents perceive their child’s death and subsequently facilitates or hinders their adjustment to loss (28). These data may bring reassurance to clinicians who fear making the relative’s grief process worse.

Another important finding is that understanding of brain death seemed to be important, regardless of whether relatives consented to or refused organ donation. The prevalence of complicated grief 9 months after the patient’s death was significantly higher in relatives who had a lack of understanding. Confusion about the death may hinder the grieving process in that, because the relatives do not understand, they may go over and over in their minds the events that led up to the death, and they may feel bitterness or anger related to the loss and/or may feel stunned, dazed, or shocked by the loss (29). To prevent these symptoms, clinicians must improve their communication by providing clear and timely information as well as opportunities to ask questions and to express feelings, including anger and fear (30). To provide quality information about brain death, all ICU clinicians must themselves feel at ease with the concept. Recent studies indicate a need for increasing knowledge and awareness of brain death and organ donation among medical students (3133) and nurses (34). A good understanding of brain death is important if healthcare professionals are to be comfortable with organ donation and to be supportive of their patients’ relatives. A recent randomized trial demonstrated that communication training for requesters can improve authorization rates and improve the quality of communication about organ donation (35). Another randomized trial showed that family presence during brain death evaluation improves understanding of brain death with no apparent adverse impact on psychological well-being (36).

This study has several limitations. First, all participating ICUs were in France, where consent to organ donation is presumed (opt-out), and the findings may not be applicable to other countries. Second, our study suffered from a loss to follow-up that may have had an impact on the results. However, such a loss is common for studies of family members after the critical illness of a loved one, and our response rate is close to those in previous research. In addition, we did not observe different rates of follow-up in the two study groups. Also, comparison of relatives who completed the follow-up versus those who did not showed that there were no major differences between the two groups. Third, the proportion of relatives of donor versus nondonor patients was unbalanced, making statistical tests underpowered. Some absolute numbers are low, and the results must thus be interpreted with caution. However, this study had a high consent rate among relatives, and the imbalance is related to the topic itself because refusal of organ donation occurs in 20% to 40% of cases, depending on the geographic region. Fourth, as noted above, this study identifies associations but cannot determine causality. Further studies are needed to determine whether improving understanding and communication during the organ donation process is associated with improved outcomes for relatives and increased organ donation rates.

In conclusion, our study shows that experience of organ donation processes varies between relatives of donor versus nondonor patients, the latter experiencing more difficulty and burden. However, the decision (consent/refusal) was not associated with grief symptoms, a finding that may help reassure clinicians who fear adding to relatives’ burden with an organ donation request. Importantly, understanding of brain death is a key element in relatives’ experience and impacts their risk of developing complicated grief. Efforts must be made to improve understanding of brain death and to convey information in the most clear and empathetic way (37).

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Correspondence and requests for reprints should be addressed to Nancy Kentish-Barnes, Ph.D., Famiréa Research Group, Medical Intensive Care, Saint-Louis University Hospital, Assistance Publique – Hôpitaux de Paris, 1 avenue Claude Vellefaux, 75010 Paris, France. E-mail: .

Supported by the Agence de la Biomédecine (France).

Author Contributions: N.K.-B., S.C., J.D., and E.A.: designed the research; S.C.: analyzed the data; N.K.-B. and E.A.: wrote the manuscript; G.C., L.J., L.M.-L., A.-G.S.L., G.V., S.M., S.D., J.C., N.P., B.Z., O.L., M.O., A.R., P.L.M., S.K., M.T., B.F., C.M., and M.G.: collected the data.

This article has an online supplement, which is accessible from this issue’s table of contents at www.atsjournals.org.

Originally Published in Press as DOI: 10.1164/rccm.201709-1899OC on March 19, 2018

Author disclosures are available with the text of this article at www.atsjournals.org.

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