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Original Articles: Hepatology

Pediatric Liver Transplant Teams Coping With Patient Death

Duncan, Sarah E.; Arnon, Ronen†,‡; DiPietrantonio, Christie; Ehrlich, Katie; Knight, Christopher S.; Chu, Jaime†,‡; Annunziato, Rachel A.∗,‡

Author Information
Journal of Pediatric Gastroenterology and Nutrition: August 2018 - Volume 67 - Issue 2 - p 169-172
doi: 10.1097/MPG.0000000000001991

Abstract

What Is Known

  • Patient death has been shown to be associated with negative psychosocial consequences for medical professionals.
  • Outside of transplant medicine, efforts to provide medical professionals with formal supports have shown promise for facilitating coping with patient loss.

What Is New

  • Transplant team members reported gaps in availability of formal support, with many relying on informal sources of support to cope with patient death.
  • Transplant team members widely supported the use of debriefing after the death of a patient.
  • Having debriefing available was associated with lower emotional exhaustion for transplant team members.

Despite improving outcomes in pediatric liver transplantation (1), patient death is still a reality faced by clinicians working with this population. Unfortunately, attention has not been devoted to understanding and facilitating clinician coping within this context. The limited research on coping with patient death among health care professionals more broadly in adult and pediatric settings suggests that such losses may be associated with a variety of negative psychosocial consequences (2), including feelings of guilt and failure (3,4), burnout (5), and compassion fatigue (6). The effects of patient death may also extend beyond clinicians’ internal experiences and interfere with personal relationships and work performance (2,4,6).

In an effort to facilitate coping, some health care institutions have established formal training and support programs for staff; for example, one type of program – bereavement debriefing – involves structured sessions to provide clinicians emotional support and to foster grief processing. Participants in pediatric settings have reported that these sessions have helped facilitate coping (7–9); yet, formal training and support programs are not consistently available within health care institutions (3,4,10–12). Although clinicians may turn to informal sources of support (e.g., speaking with colleagues, friends), these may not be sufficient for adequately managing grief surrounding pediatric patient loss (11). Notably, the lack of formalized programs appears to be inconsistent with the expressed needs of health care professionals. Across different medical disciplines in pediatrics and adult care, clinicians have indicated a desire for either the presence or increased availability of such organizational support services (6,10,13).

As medical outcomes continue to improve—perhaps altering clinician expectations—there is a pressing need to better understand how pediatric transplant clinicians cope with patient death and to identify best practices for allocating resources to help clinicians process loss. The purpose of the current study was to determine how personnel on pediatric liver transplant teams cope with patient death and what resources are currently available to such teams to offer recommendations for quality improvements.

METHODS

Participants and Procedures

Institutional review board approval was received to send an anonymous survey link to the medical directors and/or personnel of pediatric liver transplantation teams around the United States. Using the Scientific Registry of Transplant Recipients database, 2 research assistants identified all centers that had completed 5 or more transplants between January 2013 and June 2015 (the most recent reporting interval). The Web pages for each of these sites were reviewed to determine email addresses for the medical director and/or staff. In general, email addresses for staff were not readily available and, therefore, we primarily contacted medical directors to ask if they would circulate the survey link to all team members (physicians, nurses, and mental health care providers). In total, contact information for personnel was obtained for 32 centers; the survey link was sent to each of those sites.

Measures

The study survey included background questions, items regarding available resources, a needs assessment, and standardized measures of adjustment to assess coping with the death of patients on the waiting list and after liver transplant. In order to minimize burden and maximize responding, the survey was designed to be completed in 5 minutes (see Table, Supplemental Digital Content 1, http://links.lww.com/MPG/B349, which provides the full text of the survey).

Background Questions

Participants were asked to identify their role (surgeon, hepatologist, nurse, social worker, or psychologist); how many years they have worked in pediatric transplant; and how many deaths their team experiences each year of patients either on the waiting list or post-transplant.

Resources and Needs Assessment

The survey included a section on tangible and emotional resources available to transplant team members and perceptions of needs for coping with patient loss. Items in this section were generated based on prior studies on pediatric loss in medical settings (10,11,14).

Maslach Burnout Inventory-Emotional Exhaustion Scale

Emotional exhaustion was measured using 4 items from the Maslach Burnout Inventory (15) as has been utilized in other human services research (16) (see Table, Supplemental Digital Content 1, http://links.lww.com/MPG/B349, which provides the full text of the survey). Responses were measured on a Likert scale of 1-Strongly Disagree to 5-Strongly Agree, with higher numbers reflecting greater emotional exhaustion. In the present study, reliability of the Emotional Exhaustion Scale was assessed by internal consistency; Cronbach α = 0.92.

Bereavement Experiences Scale-Guilt/Blame/Anger Scale

The Bereavement Experiences Scale assesses a variety of aspects of grief and bereavement in both clinical and research settings. Factor analysis revealed 3 subscales: Existential Loss/Emotional Needs, Guilt/Blame/Anger, and Preoccupation with Thoughts of Deceased (17). In the present study, the Guilt/Blame/Anger Scale was administered (see Table, Supplemental Digital Content 1, http://links.lww.com/MPG/B349, which provides the full text of the survey). Items are coded on a 4-point response scale with anchors of 1 = never to 4 = almost always. In the present study, Cronbach α = 0.78.

Statistical Analyses

All analyses were conducted using IBM SPSS Statistics package, 24th edition. Descriptive statistics were used to characterize the sample. Analysis of variance models and independent samples t tests were tested to compare scores by different transplant team roles on the study measures. Pearson correlations were conducted to examine associations between constructs. A “P” value of 0.05 or less, 2-tailed, was chosen as the level of significance.

RESULTS

In total, 132 surveys were returned, with 120 completed. Surveys were obtained from 7 surgeons (5.8%), 48 hepatologists (40.0%), 47 nurses (39.2%), 13 social workers (10.8%), and 3 psychologists (2.5%); 2 participants did not provide their role on the transplant team (1.7%). Because of the low number of surgeon and psychologist respondents, we created “physician” (hepatologists and surgeons) and “mental health provider” (social workers and psychologists) categories. Therefore, the N's for the 3 roles were 55 physicians (45.8%), 47 nurses (39.2%), and 16 mental health providers (13.3%).

The majority of respondents reported experiencing 1 to 2 (62.5%) or 3 to 5 (27.5%) deaths per year and working in pediatric transplant for at least 6 years (58.3%). The amount of time worked in transplant was significantly associated with role in the transplant team; 70.9% of physicians worked in pediatric transplant for at least 6 years compared to 46.8% of nurses and 50.0% of mental health workers, χ2 (2, 118) = 6.61, P = 0.04. About half of the respondents (54.2%) indicated that they still thought about unresolved issues related to the death. Most described having no formal training in coping with patient loss (78.2%). Overwhelmingly (98.3%), respondents thought that formal debriefing procedures would be helpful, although this was routine for just more than half (55.8%). Table 1 displays additional information about availability of formal supports.

TABLE 1
TABLE 1:
Reported availability of formal supports

In terms of informal supports, respondents frequently provided support to teammates (76.7%), but 30.0% reported that they did not receive any support. Of the respondents who reported they did receive support following the death of a patient (n = 83), the most common source of support was a colleague from the medical team (72.3%), followed by a colleague from the support team such as a social worker or psychologist (45.8%) and a significant other (44.6%).

The Emotional Exhaustion Scale and Bereavement Experiences Scale were weakly correlated, r (118) = 0.19, P = 0.04. Mean scores on the Emotional Exhaustion Scale (2.94, SD = 1.13) and the Bereavement Experiences Scale (1.35; SD = 0.31) were comparable to normative data, but nurses (M = 3.21, SD = 1.16) reported significantly more emotional exhaustion than physicians, (M = 2.63, SD = 1.08), F (2,115) = 4.22, P = 0.02. In contrast, physicians (M = 1.43, SD = 0.29) had slightly higher bereavement scores than nurses (M = 1.27, SD = 0.33), F (2,115) = 3.88, P = 0.02. Average emotional exhaustion and bereavement scores did not differ significantly for participants with at least 6 years in transplant compared to those with fewer years of experience, although there was a trend toward lower average emotional exhaustion scores for more experienced team members (M = 2.78, SD = 1.14) compared to less experienced members (M = 3.16, SD = 1.08), t (118) = 1.85, P = .07.

Finally, we examined whether particular services were associated with scores on the Emotional Exhaustion Scale and Bereavement Experiences Scale. Those respondents who indicated that they have formal debriefing procedures at their institutions reported significantly less emotional exhaustion (M = 2.69, SD = 1.12) than those without debriefing (M = 3.25, SD = 1.06), t (118) = 2.83, P = 0.006. There were no significant differences in either bereavement or emotional exhaustion scores between those participants who did and those who did not have access to other types of support (ie, training, support staff, and guidelines).

DISCUSSION

Based on this multicenter report, there are gaps in formal resources available to pediatric liver transplant team members after experiencing patient death. Of the 4 formalized supports queried in this study—training, guidelines, support staff, and debriefing—debriefing was the most widely available type of support, but this was still only provided to just more than half of the participants. Having designated personnel to support staff following the death of a patient was the next most common form of support offered, with about half of respondents indicating this was available through their institutions. The remaining 2 formal supports—training and guidelines—were each available to only about a fifth of the sample.

The paucity of formal support offerings for pediatric liver transplant teams is consistent with findings from studies of other areas of medicine. In a review of bereavement support services provided to health care professionals, 9 of the 12 studies focused on grief in pediatric settings—specifically general pediatrics, pediatric oncology, neonatal intensive care, or pediatric palliative care (2). One study from the review found that all UK-based pediatric hospice clinicians surveyed had access to bereavement advisors and the vast majority (88%) used debriefing (18). In contrast, another study of supports offered to US pediatric oncology nurses found that about half (51%) of surveyed institutions used voluntary debriefing sessions (19). Taken together with the findings of the present study, this not only suggests that supports are available inconsistently across medical settings, but that settings with lower expectations that the patient may die (ie, oncology and liver transplant) may be less prepared to support their staff through grief associated with patient loss.

The dearth of formal supports in pediatric transplant settings is particularly concerning because of the potential benefits of debriefing following a patient death. Although team members in the present study adjusted well overall, about half of clinicians endorsed continuing to think about unresolved issues. Clinicians with the opportunity to participate in debriefing fared better than clinicians without such opportunities. Notably, this study, therefore, also provides support that debriefing specifically may confer more benefits to pediatric liver transplant team members. Furthermore, clinicians overwhelmingly expressed the desire for debriefing opportunities, which is consistent with findings from pediatric and adult settings in other areas of medicine (6,10,13,20).

Limitations and Strengths

This study has several limitations. First, a brief self-report measure was used to reduce the burden of study completion. This survey captured participants’ responses about the availability of debriefing; however, we do not know if the participants took part in the debriefing sessions available to them and, therefore, cannot draw definitive conclusions about whether completing debriefing is associated with better coping. Second, our recruitment strategy of emailing study information to medical directors and asking them to disseminate it to their staff was used because individual staff email addresses were generally not available on institutions’ Web sites. As a result, we do not know the total number of team members in these units and are unable to determine the response rate to the survey. Given that survey information was, however, sent to 32 transplant centers, which we would expect to each have at least 1 to 2 surgeons, the 7 surgeon responses received are not sufficient to specifically investigate these team members’ perspectives. In addition, to preserve anonymity, participants were not asked to report their institutional affiliation, so we are unable to determine how many centers are represented in these data. Third, it is possible that participants who reported debriefing was not available to them were unaware of programs that exist at their institutions. This, however, would still be problematic as it could suggest that the programs are underemphasized by the institutions. Finally, institutional confounds may account for differences in emotional exhaustion between clinicians with and without available debriefing; perhaps certain characteristics of institutions that offer formal supports are associated with better coping rather than debriefing itself. The absence of differences in emotional exhaustion between clinicians with and without access to other types of supports, however, indicates that differences in coping may reflect the effects of debriefing specifically rather than institutional culture more broadly.

Despite these limitations, this study has important strengths. The multicenter design offers insight into how pediatric liver transplant teams within the United States are supported at their institutions and suggests support services are lacking despite apparent benefits for team members. In addition, the present study was able to capture the experiences of different types of team members (physicians, nurses, and mental health workers), providing evidence that these roles are differentially associated with coping in the face of patient death. Furthermore, by assessing the availability of several types of supports (rather than debriefing exclusively) and examining coping from multiple perspectives (ie, grief and emotional exhaustion), we were able to begin cultivating a more nuanced understanding of the ways in which specific supports may be related to pediatric transplant team coping.

Future Directions

The findings of the present study point to several important areas for future research. Further research is needed to better understand the differences in coping between nurses and physicians. In the present study, nurses reported greater emotional exhaustion than physicians, whereas physicians had slightly higher bereavement scores. Nurses perhaps experienced higher emotional exhaustion because they may have less of a role in decision-making (21) or provide more intensive emotional care to patients and families (22); nurses may be sought out the most too as a source of mutual support or continued connection to the team. Conversely, they may also be on the front line if families blame the team for the child's death. Determining what accounts for these differences in coping could inform the development of interventions tailored to the needs of individual transplant team members.

In addition, there is a pressing need for further empirical investigations into debriefing. Critical incident stress debriefing was initially designed to prevent posttraumatic stress in emergency workers rather than to facilitate the bereavement process in health care professionals (8). Studies of critical incident stress debriefing immediately after crisis situations have demonstrated that it may be ineffective or even harmful (23,24); therefore, the use of debriefing after patient loss requires more comprehensive investigation. Such research could then guide recommendations on the implementation of curricula at transplant institutions that incorporate debriefing sessions for team members.

Finally, there is a need to investigate the specific components of interventions designed to facilitate coping. Existing interventions vary in terms of types and amount of services offered, and it is unclear which components are most critical in effecting change (2). Dismantling studies designed to identify these components would help in the allocation of hospital resources and clinician time to enhance coping with patient loss.

CONCLUSIONS

Overall, the results of the present study show that although pediatric liver transplant team members are generally able to cope with patient loss, they desire more formal supports than those typically offered at their institutions. This study points to debriefing as a promising avenue for health care institutions to enhance clinician coping; clinicians have a clear interest in participating in these programs, and preliminary evidence suggests they may be associated with decreases in emotional exhaustion in clinical staff.

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Keywords:

burnout; emotional exhaustion; institutional support

Supplemental Digital Content

Copyright © 2018 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition