Themes in the Management of Pediatric Brain Death Contestation: Exploratory Qualitative Work From Multidisciplinary Health Professionals in the United States

Abstract

OBJECTIVES:

To explore health professionals’ experiences of contested pediatric brain death/death by neurologic criteria (BD/DNC) cases, including factors contributing to conflict, resource needs and utilization, perceived utility of supports available, and case resolution and aftermath.

DESIGN AND METHODS:

Inductive thematic analysis of semistructured interviews with members of the Society of Critical Care Medicine (SCCM) Contestation of Pediatric Brain Death Task Force.

SETTING:

Ten institutions across seven U.S. states and the District of Columbia.

PARTICIPANTS:

Nineteen Task Force members were interviewed in 2023, including pediatric intensivists, neurologists, nurses, respiratory therapists, attorneys, palliative care clinicians, social workers, ethicists, and hospital leadership. Task Force members were recruited primarily because of their experience with contested BD/DNC, although some were recruited because of expertise in other relevant topics, such as communication, information acquisition in BD/DNC, and health equity.

INTERVENTIONS:

None.

MEASUREMENTS AND MAIN RESULTS:

We identified five themes relevant to managing pediatric BD/DNC contestation: 1) personnel to consider involving, including subspecialty consultation, social work, hospital leadership and administration, ethics teams, legal counsel, and security; 2) timelines to maintain, including factors to consider when deciding the most appropriate family accommodations; 3) support for families and patients, including strategies to enhance communication, identifying and mitigating mistrust, and connecting families with support both within and outside the hospital; 4) support for staff, including disseminating information throughout the care team, staff support for one another, and establishing written documentation and policies; and 5) complementary strategies that may augment approaches to BD/DNC contestation, such as policies addressing requests for potentially inappropriate treatment.

CONCLUSIONS:

Family contestation of pediatric BD/DNC challenges all parties involved. The five themes identified from our qualitative analysis of interviews with experienced professionals do not constitute SCCM clinical practice guidance, but they will be used to inform the development of approaches to BD/DNC contestation through further scholarship and community consultation.

RESEARCH IN CONTEXT.

• Highly publicized adult and pediatric cases of brain death/death by neurologic criteria (BD/DNC) contestation have occurred throughout the United States and the world, and clinicians frequently report encountering requests for continued technological support after declaration of BD/DNC.

• Although these are often challenging, high-stakes situations, little published guidance exists for individuals embroiled in these cases. Clinicians are also often restricted in their ability to communicate with one another to seek advice because of confidentiality laws.

• To address these gaps, the Society of Critical Care Medicine convened the Contestation of Pediatric Brain Death Task Force to explore professional experience with BD/DNC, including contestation. The group consists of 19 key informants and includes representation from physicians, nursing, respiratory therapy, attorneys, and ethicists.

AT THE BEDSIDE.

• Interviews with professionals experienced with contested pediatric BD/DNC provide five themes to consider when approaching contested cases, including personnel, timelines, support for families and patients, support for staff, and complementary strategies.

• The optimal approach to contestation varies depending on the type of objection and the time point in the evaluation when it is expressed. Clearly eliciting the nature of families’ objections and concerns can aid in establishing the preferred response.

• A multidisciplinary effort that aims for appropriate information exchange among team members, a thorough understanding of families’ concerns or objections, and clear, consistent messaging to families is necessary to establish a satisfactory process of conflict resolution.

In the decades since the Harvard ad hoc committee posited that “irreversibl[y]…comatose individuals who have no discernible central nervous system activity” are dead (1), there have been conflicts between the law, the public, and the medical community as brain death/death by neurologic criteria (BD/DNC) has been implemented. Highly publicized disputes over BD/DNC evaluation and declaration in adult and pediatric patients have occurred throughout the United States and the world (2–8), and clinicians report frequent requests to defer BD/DNC evaluation or continue technological support after BD/DNC declaration (9–12).

Although BD/DNC contestation is challenging and time-sensitive (12, 13), there are limited empirical data to guide the approach to these cases. Existing expert recommendations (11, 14) provide guidance in the setting of requests for continued technological support but may not be applicable to all types of objections or include action plans with recommendations for all personnel involved. To address these gaps, the Society of Critical Care Medicine (SCCM) formed a Contestation of Pediatric Brain Death Determination Task Force. The Task Force aims to build a toolkit to aid clinicians, hospital personnel, and family members involved in a BD/DNC case that is being contested or appears at risk of being contested. To inform the development of the toolkit, the SCCM sponsored a qualitative analysis of interviews with Task Force members.

METHODS

Context and Task Force Membership

Task Force membership and sampling were purposive, and included 19 key informants (15) from ten institutions in the United States. Members were both self-selected and recruited by the SCCM based primarily on their firsthand experiences with high-profile contested cases. All members have experience with pediatric BD/DNC. Most members have direct experience with contested cases (Table S1, https://links.lww.com/PCC/C619), although members’ positions on BD/DNC conflict resolution were not solicited before recruitment. Additional key informants (15) were recruited because of their relevant expertise regarding public knowledge of BD/DNC, communication, ethics, or health equity.

Data Collection and Analysis

Realist thematic analysis (16, 17) of interviews with Task Force members was used to explore experiences with pediatric BD/DNC, with a focus on contestation. A Task Force subgroup (E.A., J.I.F., A.A.K., A.H.J.W., J.C.F., M.E.M.) designed an interview guide (Appendix, http://links.lww.com/PCC/C619) to elucidate the circumstances of contestation, characterize responses and needs, understand perceptions of available support, and assess the case aftermath. Task Force members with qualitative research experience (E.A., J.I.F.) conducted the interviews via Zoom between January 2023 and August 2023. Interviews ranged from 33 to 72 minutes in length. GMR Transcription, a HIPAA-compliant service, transcribed the recorded interviews. Full review of the study was waived by the University of Michigan Institutional Review Board (HUM00220120).

De-identified interviews were inductively coded (E.A., J.I.F.) using Dedoose (SocioCultural Research Consultants, LLC, Los Angeles, CA) (18). Codes were organized into initial themes, and iteratively checked in relation to the dataset (16). Constant comparative method was used to explore differences and similarities between profession, BD/DNC experiences, geographic location, and years in practice (19). In thematic analysis, robust themes are identified when they are distinct, coherent, and internally consistent (16). Neither the dataset nor the sample requires a predefined size, but must adequately describe the research question (16, 20).

De-identified preliminary findings were discussed with the full Task Force, and additional data exploration was performed based on applicable feedback. Although reflexivity was used throughout the analysis to limit inappropriate bias (21, 22), our methodology aimed for “reflexive dialogue with the researchers and among themselves throughout the lifecycle of the project” and represents a described form of participatory qualitative research (22). The Standards for Reporting Qualitative Research informed the research process and article development (23).

RESULTS

All Task Force members were interviewed. Sixteen participants had direct experience with BD/DNC contestation at the time of their interview, meaning they had provided direct patient care or consultation. Two of the remaining three participants also described indirect experiences, meaning cases that they had encountered at their institutions without providing direct patient care or consultation. Those with direct experience reported involvement with one case up to an estimated 15 unique cases. Individual quotations are used to illustrate larger themes and subthemes, and these can be found in full in Table S2 (http://links.lww.com/PCC/C619). Participants are identified by a letter and number code.

Defining “Contested” Cases

Although members were initially recruited based on their experiences with specific high-profile cases, “contestation” does not have an accepted definition in the literature, and variable terminology is used to describe conflict (e.g., “refusals,” “objections,” “opposition,” or “accommodation”) (10, 12, 24, 25). Thus, each participant was asked to define “contestation” at the beginning of their interview. This enabled us to capture a range of potentially relevant experiences, illuminate how frontline personnel conceptualize these terms, and challenge our preconceived notions of conflict (Table 1).

TABLE 1.

Definitions Provided by Task Force Participants When Asked to Define “Contestation” of Brain Death/Death by Neurologic Criteria

What is your definition of “contestation?”	“Family objects to either BD evaluation or removal of [the breathing tube] post declaration.”—P1
	“Once [the family] want legal counsel to actually do maneuvers to prevent completing the diagnosis or stopping support afterwards.”—P2
	“The family disagreeing the child was brain dead and requiring legal counsel.”—P3
	“It means somebody has put up some wall to prevent declaration or prevent withdrawal of the ventilator. That, to me, is contested. Not just simply someone in denial, or unhappy about it, but they’ve actually gone through legal hoops to put a barrier up.”—P4
	“I believe the child meets brain death criteria and the family is, uh, strongly opposed or refusing to let me move forward with my examination or declaration.”—P5
	“I know when we’ve been talking about contested in our context, we are thinking potentially cases that have gone to court, say, the Jahi McMath case. But for me it is the situation where, say, a family has refused, but not necessarily to the point of going to court.”—P8
	“I think of the courts being involved, and lawyers, and the media. There are people who will talk about, I’m sure, these internally contested cases, which don’t involve those aspects. But when I am talking about this, that’s sort of what I’m thinking about.”—P11
	“For me, it would be anything where there’s a barrier to following our documented protocols…anything that stops that process from happening that wasn’t our decision from a medical or healthcare standpoint.”—P12
	“Family objects to performing test or to withdrawing organ sustaining treatment.”—P14
	“Contested could be someone disagreeing with brain death, or it could be they’re actually taking legal action against it, [but] not necessarily the legal system is involved.”—P16
	“In my mind, you have to have risk, or legal, or, or some kind of lawsuit. Those kinds of things.”—P17

BD = brain death.

Quotations are lightly edited for length. Participants are identified by letter and a number. Definitions that do not appear here were redundant to those provided or are included in the text of the article.

Participants indicated that attempts by the family to delay or halt typical BD/DNC evaluation processes constituted “contestation.” Legal action was sometimes involved, but was not a required component. Participants noted that confusion or denial can represent normal family reactions to BD/DNC. Therefore, expressing these emotions was not necessarily considered contestation; rather, contestation represented extreme versions of these reactions with procedural consequences. “I think it goes beyond normal adjustment and coping [in the setting of a] shocking experience … The family hasn’t had a lot of time to adjust from, ‘My kid was walking around normal and healthy two days ago.’” (P10)

Identification of Resources

Realist thematic analysis identified five themes to facilitate the development of supportive resources: 1) personnel, 2) timelines, 3) support for families and patients, 4) support for staff, and 5) complementary strategies (Table 2).

TABLE 2.

Summative Table of the Five Themes and Associated Subthemes Identified Through Inductive Thematic Analysis of Semistructured Interviews With Professionals Familiar With Pediatric Brain Death/Death by Neurologic Criteria

Theme	Associated Subthemes
Personnel	Whom to involve
Timelines	More time; less time
Support for families and patients	Consistent messaging and information flow; trust and mistrust
Support for staff	Information dissemination throughout the care team; staff supporting each other; physical presence; written policies and documentation
Complementary strategies	Requests for potentially inappropriate treatment approach; effective, standardized education in brain death/death by neurologic criteria evaluation

Theme 1: Personnel

Participants described the personnel involved, especially as conflict escalated. Participants recognized important contributions from all members of the primary team, including physicians, nurses, respiratory therapists, social workers, and trainees. Clinical consultants were often involved, including pediatric neurology and palliative care.

When conflict altered standard practices, involvement from additional teams became necessary. Ethics teams, hospital legal counsel, hospital leadership, security, and, if they were not already involved, social work were the most common additional personnel. Multidisciplinary planning was essential given the complex medical, legal, ethical, and public relations components of contested cases. Most participants described ethics involvement in contested cases, but this was not uniformly viewed as beneficial: “I don’t think we get them involved as much because, well, it never does anything. It never moves anything.” (P4)

Theme 2: Timelines

Participants emphasized the importance of a thoughtful approach to the time course of a BD/DNC case. Taking additional time to understand a family’s objections or concerns was considered beneficial. “Sometimes I think it is a case of denial and distrust, not really believing what one is told from a medical system. And then sometimes I think there are philosophical objections that are almost well-thought out in a community beforehand. Like certain religious objections, for example.” (P9) Additionally, participants indicated that active, careful listening sometimes permitted recognition of misconstrued objections. “If it doesn’t sound like, ‘Yes, I’m ready,’ then we don’t think people are ready…if you take a minute and listen underneath, what they’re telling you is that they’re losing control, and you can say, ‘Yeah, that’s expected, this is what’s happening, and this is what’s next.’” (P7)

Participants disagreed on the utility of slowing processes down in contested cases (Table S2, http://links.lww.com/PCC/C619). Some participants indicated that more time increased conflict: “The more time you give, if it’s a week, whatever it is, that family is just gonna dig their heels in.” (P2) However, finite accommodations (24), that is, accommodating requests for time to achieve specific goals, such as the arrival of family members, were generally seen as beneficial. Indefinite accommodations (24), that is, extending the timeline indefinitely, were more likely to be perceived as avoidant, noncommittal, or unhelpful. Especially in the absence of a specific reason, delaying the discontinuation of technological support following BD/DNC declaration was more uniformly discouraged: “I think we’re trying to do what we thought was the best patient-centered, family-centered care, but [we should be] more to the point and say, ‘I’m sorry, your child has died, we’re going to take these machines off so that you can be with them.’” (P6)

Theme 3: Support for Families and Patients

Participants recognized that BD/DNC is often conceptually or culturally novel, and families are asked to process it during a time of overwhelming emotion. Clear, consistent messaging and regulating the flow of information (including from trainees and consultants) were necessary to establish rapport and reduce the contribution of miscommunication or cognitive or emotional overload to conflict. “We see it all the time, families will ask everyone who walks in the room the same question, and when they get a slightly different answer, that can really lead to a lot of doubt…and so [cases] where there are concerns is where I think, definitely [consider] limiting the number of people who are having discussions.” (P4)

Establishing rapport and trust required careful attention for families with prior personal or community histories of discrimination and resultant mistrust within medical systems. One strategy suggested to augment trust included explicit recognition of racism and discrimination as potential contributors to interactions within the medical system and a stated commitment to minimizing them (Table S2, http://links.lww.com/PCC/C619). Another related strategy was to seek support for the family from outside the hospital, including religious and community support.

Consideration of the child was rarely mentioned. Although all participants discussed the need to support families, just four participants brought up the child’s dignity or moral status. “[We] do really invasive things to people all the time. The things that we do to bodies [are] almost incomprehensible unless there’s a really damn good reason to do it. It’s not just permission…it has to be for the patient’s best interests and for their flourishing.” (P13)

Theme 4: Support for Staff

Contested BD/DNC cases were universally described as “challenging,” “exhausting,” and “tragic.” Staff needed effective, multifaceted support. Some of this support came from within the primary team, such as offloading other work and, where possible, protecting vulnerable team members, such as trainees. Other components of staff support included considering input from all team members when formulating care plans and ensuring accurate, up-to-date information was disseminated to all involved personnel. Effective support from consulting or ancillary services required physical presence to enhance communication and mutual understanding of dynamic situations. The availability of clear institutional policies was also supportive.

Support from hospital security was a component of highly contentious cases. A few participants described receiving threats of violence, and additional participants described threats made toward others or threats that were made indirectly, for example, through social media. However, hospital security as a routine mechanism for staff support could undermine supporting families, especially families from historically marginalized and minoritized groups based on racial essentialism. “We’ve had the threat of security for families who are upset…I feel that that’s another sign of our inherent racism as a system, that we police grief…to have someone grieve more dramatically and elaborately is uncomfortable. And we see threat in it. And so we call security.” (P6)

Participants described lasting personal impacts of contested cases. “Honestly, I slept with the lights on for like a month after that…it altered the trajectory of my whole career.” (P11) These effects occurred despite active attempts to remain objective or compassionate. “Conversations are often disparaging of [your] character…as much as you don’t want it to feel personal, there’s only so many times someone can say you’re a terrible person before you don’t take it personally.” (P10) Because of these detrimental effects, participants emphasized the importance of self-care. “No matter how many years you do it, [you have] to have a little self-compassion…That same compassion you have [for] families, [we have to show it] to ourselves.” (P9)

Theme 5: Complementary Strategies

Complementary approaches, such as policies on addressing requests for potentially inappropriate treatment, could aid in navigating contested cases. “It’s somewhat analogous [to] a regular medical futility conflict. We have a catastrophically ill child, and the team thinks that…withdrawing life-sustaining treatment is appropriate because there’s no prospect of recovery.” (P14) If an institution did not have policies addressing consent to BD/DNC evaluation or withdrawal of technological support, then policies or guidelines regarding requests for potentially inappropriate treatment (26) could be valuable. Additionally, participants recommended ensuring policies’ alignment if their BD/DNC and potentially inappropriate treatment policies existed separately from one another.

Training in BD/DNC evaluation was not advocated to acutely aid in BD/DNC contestation. However, establishing uniform standards for training and evaluation was identified as a strategy that may augment public trust in BD/DNC and improve clinicians’ confidence in their skills in BD/DNC evaluation and communication, potentially decreasing future likelihood of contestation (Table S2, http://links.lww.com/PCC/C619).

DISCUSSION

BD/DNC contestation is a challenging experience for all involved. Our interviews aimed to explore the multidisciplinary perspectives of hospital personnel who have encountered contested BD/DNC cases. Although these five themes are not consensus recommendations, clinical practice statements, or specific management techniques, they can be used to proactively develop and adapt approaches to unique cases or circumstances. Furthermore, they will inform our ongoing work to develop a toolkit to aid BD/DNC contestation management.

Optimal management may vary depending on when during BD/DNC evaluation an objection is expressed. As other authors have also indicated (12, 24, 27, 28), active listening to elicit the full nature of families’ objections can help to establish the preferred path forward. Regardless of the path chosen, clear and consistent messaging tailored to the specific objection may minimize the amplification of conflict because of miscommunication. A multidisciplinary effort is necessary to attend to each of the complex, specialized aspects of these cases, although the most appropriate personnel to involve may vary by institution and by case. The incorporation of all team members’ input and information dissemination throughout multidisciplinary teams may sometimes require deviation from traditional clinical staffing or decision-making models (28).

Coherent policies regarding BD/DNC evaluation are widely perceived as beneficial (12, 13, 28–30). Institutional BD/DNC policies that are consistent with the most up-to-date recommendations in adults and pediatrics (29) will require language addressing the following: 1) recommended procedures to address contestation; 2) guidelines for reasonable accommodation; and 3) institutional positions on the need for consent. It is also useful for institutions to ensure that policies regarding requests for potentially inappropriate treatment are structured to complement their BD/DNC policies.

In all cases, there is a widespread need for effective support. Our participants recognized the need to support families, even during contentious cases. The serious injury or death of a child is among the most profound traumas a family can face. For some families, this trauma is compounded by previous or ongoing experiences of racism, devaluation, or errors within health systems (12, 28, 31, 32). Empathetic, culturally sensitive, linguistically accessible, and trauma-informed care strategies can support families during a traumatic event, regardless of the ultimate outcome (12, 28, 31). Education about the medical facts of BD/DNC can sometimes be useful to support families; similarly, education about varying conceptions of death may sometimes be useful for staff. Contested cases also require clinicians and hospital personnel to support one another. Effective support requires presence, action, and commitment.

Hospital personnel are often severely restricted in their ability to communicate outside their institutions about contested cases because of privacy and confidentiality concerns (33). Furthermore, when turning to the literature for guidance, clinicians may encounter suggestions that BD/DNC contestation primarily results from their own knowledge deficits or flawed communication skills (34, 35) or that disregarding their professional or moral integrity is required for compassionate, ethical care (35, 36). This can create a sense of isolation and failure. Impeccably clear communication and moral humility matter, and individual and process evaluation are essential aspects of professional development and quality improvement (27, 28). However, reducing these complex cases to individual failures compounds emotional and moral distress. We hope that unfiltered perspectives from individuals who have experienced similar cases will, therefore, be a source of support in themselves and that sharing them will promote open reflection and discussion (12, 37).

LIMITATIONS AND FUTURE DIRECTIONS

Our qualitative results must be interpreted with the caveat that participants held varying definitions of BD/DNC contestation. However, we believe that sufficient overlap exists between definitions to make our analysis generalizable among participants (Table 1). Further, examining the differences between definitions may illuminate unique contestation phenotypes, which could require different approaches. Eliciting participants’ perceived definitions of “contestation” may also assist in establishing a conceptual framework for a phenomenon that is not widely, consistently, or richly defined in practice or the literature.

Although our data emphasize support for staff and families, discussions of the child were largely absent. This deserves further exploration. Furthermore, the occasionally conflicted relationships between clinicians and ethics teams have also been observed by other authors (37) and warrant additional scrutiny.

Additionally, our use of thematic analysis, which neither requires nor claims thematic saturation (20), recognizes that perspectives exist beyond our dataset, and more work is needed. Other useful viewpoints could include adult clinicians, trainees, clinical risk managers, or hospital chaplaincy, as well as increased representation from accommodation states. Increasing racial, ethnic, and other demographic representation is important given participants’ emphasis on discrimination and mistrust as contributors to conflict. Parent and family perspectives are also essential to process improvement in BD/DNC contestation. Although contested cases are intense and sometimes adversarial, rigorous exploration of family perspectives on BD/DNC has been successfully achieved (38, 39).

Last, an effective toolkit must be informed by further scholarship. Clinical practice recommendations must account for relevant and potentially variable state, federal, and occasionally international laws. Understanding where clinicians and the public obtain information (and misinformation) about BD/DNC and how they integrate that information into individual cases and processes is also essential. Future Task Force work products will explore these crucial facets.

CONCLUSIONS

Contestation of pediatric BD/DNC is a challenging, high-impact event. Through semistructured interviews with individuals familiar with pediatric BD/DNC, we identified five themes: 1) personnel, 2) timelines, 3) support for families and patients, 4) support for staff, and 5) complementary strategies. Although not standalone strategies, these themes may inform the future development of resources that are immediately available in the event of a contested BD/DNC case, although fully developed strategies require additional scholarship. Institutional policies that offer clear guidance while allowing clinical flexibility are a necessary component of crafting optimal responses. Future research should solicit additional professional and family input to improve contestation responses in ways that best serve and support children, families, and hospital staff.