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Care for Dying Children and Their Families in the PICU: Promoting Clinician Education, Support, and Resilience

Dryden-Palmer, Karen, MSN, RN1,,2; Garros, Daniel, MD3,,4; Meyer, Elaine C., PhD, RN5; Farrell, Catherine, MD, FRCPC6; Parshuram, Christopher S., MBChB, DPhil1,,2

Pediatric Critical Care Medicine: August 2018 - Volume 19 - Issue 8S - p S79–S85
doi: 10.1097/PCC.0000000000001594
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Objectives: To describe the consequences of workplace stressors on healthcare clinicians in PICU, and strategies for personal well-being, and professional effectiveness in providing high-quality end-of-life care.

Data Sources: Literature review, clinical experience, and expert opinion.

Study Selection: A sampling of foundational and current evidence was accessed.

Data Synthesis: Narrative review and experiential reflection.

Conclusions: The well-being of healthcare clinicians in the PICU influences the day-to-day quality and effectiveness of patient care, team functioning, and the retention of skilled individuals in the PICU workforce. End-of-life care, including decision making, can be complicated. Both are major stressors for PICU staff that can lead to adverse personal and professional consequences. Overresponsiveness to routine stressors may be seen in those with moral distress, and underresponsiveness may be seen in those with compassion fatigue or burnout. Ideally, all healthcare professionals in PICU can rise to the day-to-day workplace challenges—responding in an adaptive, effective manner. Strategies to proactively increase resilience and well-being include self-awareness, self-care, situational awareness, and education to increase confidence and skills for providing end-of-life care. Reactive strategies include case conferences, prebriefings in ongoing preidentified situations, debriefings, and other postevent meetings. Nurturing a culture of practice that acknowledges the emotional impacts of pediatric critical care work and celebrates the shared experiences of families and clinicians to build resilient, effective, and professionally fulfilled healthcare professionals thus enabling the provision of high-quality end-of-life care for children and their families.

1Critical Care Program, The Hospital for Sick Children, Toronto, ON, Canada.

2Center for Safety Research, Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.

3Stollery Children’s Hospital, Edmonton, AB, Canada.

4Department of Pediatric Critical Care, John Dossetor Health Ethics Centre, University of Alberta, Edmonton, AB, Canada.

5Department of Psychiatry, Boston Children’s Hospital and Center for Bioethics, Harvard Medical School, Boston, MA.

6Division of Pediatric Intensive Care, CHU Sainte-Justine, Montréal, QC, Canada.

Dr. Meyer disclosed that she is an Associate Editor for Simulation in Healthcare. Dr. Farrell received funding from Centre hospitalier universitaire Sainte-Justine and Canadian Paediatric Society. Dr. Parshuram disclosed other support from Robin DeVerteuil Foundation (as specified in the introduction article) and disclosed he is a named inventor of the patent of the Bedside Paediatric Early Warning System (the patent owner is the Hospital for Sick Children). He has received funding from holding shares in Bedside Clinical Systems, a clinical decision support company in part owned by the Hospital for Sick Children. The remaining authors have disclosed that they do not have any potential conflicts of interest.

For information regarding this article, E-mail: karen.dryden-palmer@sickkids.ca

PICU clinicians are the human instruments through which care in the PICU is delivered. Clinician well-being influences the day-to-day quality and effectiveness of patient care, team functioning, and the retention of skilled individuals in the PICU (1–3). Routine PICU practice exposes healthcare professionals to complex clinical dilemmas and challenging outcomes that can cause acute distress and, in some cases, can insidiously undermine personal well-being and effectiveness as clinicians (4, 5). In this article, we focus on the healthcare professional in PICU—describing consequences of providing care to the children who unfortunately die in PICU and their families. We describe practical approaches that may help clinicians better navigate the stresses of providing high-quality end-of-life (EOL) care.

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DEFINING THE PROBLEM: STRESSORS IN THE PICU

Stressors are common in PICU work. Death has become an increasingly less frequent outcome in PICU, and expectations of survival are higher (6). The majority of deaths follow decisions to forgo life-sustaining therapies, and, generally, the trajectories of nonsurvivors are longer and more complex (7). Clinical situations involving EOL or prolongation of death are reported among the most influential stressors for PICU clinicians (8–10).

The stressors associated with EOL care are dynamic and include inheriting the consequences of preexisting decisions, the complexities of deciding the goals of care for a child who is likely to die, the challenges of providing increasingly nuanced EOL care, and managing potential conflict. The frequency and magnitude of these stressors are increased by changing societal, parental, and medical expectations of survival, complex decision-making processes that include multiple teams with differing perspectives, readily available supportive technology, and prognostic uncertainty. Preemptive and responsive strategies to help address these different types of stressor are described below.

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STRESSORS AND THE RESPONSES OF ICU HEALTHCARE PROFESSIONALS

PICU practice is action based, founded on vigilance and skillful responsiveness to the clinical needs of critically ill children. Workplace “stress” provides the motivation to act in response to a given stressor (11). In the PICU, day-to-day clinician stress supports the vigilance underpinning effective monitoring and responses to the routinely occurring acute needs of patients. This is most easily understood in the context of clinical deterioration; however, the concept applies similarly to moral, ethical, and other workplace challenges.

A PICU clinician’s situational awareness is adaptive and can lead to productive, timely, and effective actions. This is PICU care at its best and is the level at which individuals and teams should strive to function. If the stressors are perceived or experienced as insufficient to motivate productive actions or too high such that the individual is overwhelmed, then the responses are likely to be suboptimal and may lead to less than ideal outcomes for patients and clinicians.

The effectiveness of a response to any given stressor is a manifestation of factors at the individual, situational, and the organizational level (9). Experience suggests that levels of stress vary among PICU clinicians and individual traits, and recent experiences are important determinants of the day-to-day experience of stress (12). Prior experience may predispose an individual to be overresponsive to routine workplace stressors. Heightened, prolonged, and unhealthy stress levels have been described in the literature and may manifest distinctly as moral distress, posttraumatic stress, and variants of workplace anxiety (1, 12–14). Conversely, underresponse to stressor cues has been observed in healthcare professionals who may manifest states described as burnout, depression, compassion fatigue, and workplace cynicism (5, 14–16).

Both overreaction and underreaction to common stressors are problematic (17) and can result in compromised work performance, erode professional satisfaction, increase intent to leave PICU, may reenforce these unfavorable responses with future stressors, and compromise the well-being of healthcare professionals (2). We present a conceptual model that reflects these three zones of clinician responses to PICU stressors that is informed by work describing the autonomic nervous system’s physiologic stress responses (Fig. 1). The adaptive or “optimal” zone of stress for individuals and teams in ICU is between the zones of underresponsiveness and overresponsiveness to stressors. The under- and overresponsive zones represent clinician states that can result in suboptimal PICU care and that may compromise the well-being of clinicians.

Figure 1

Figure 1

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MORAL DISTRESS, BURNOUT, COMPASSION FATIGUE, AND RESILIENCE

Moral distress in healthcare arises when an individual feels that participation in a moral choice, action or inaction, is contrary to their values, and he/she is helpless to effect change (18). For moral distress to occur three elements are required: 1) recognition of moral tension, 2) a decision that is perceived as morally defensible, and 3) perceived or actual constraint from acting on that decision. The perception of compromise of one’s core values or professional obligations distinguishes moral distress from other concepts such as emotional distress, compassion fatigue, and posttraumatic stress (19). Evidence suggests that measures of moral distress are correlated with other constructs of clinician distress (8).

Moral distress is commonly measured using the Moral Distress Scale-Revised (MDS-R) (18). To date, no threshold score or range suggestive of moral distress has been described. PICU staff score is higher on the MDS-R compared with staff on pediatric ward and adult ICU (8). Emotional and physical burdens of moral distress include anger, anxiety, guilt, feelings of powerlessness, or psychologic disequilibrium. Healthcare professionals may also be progressively more sensitized by repetitive stressor exposure, and thus ratings of moral distress may gradually increase overtime and not return to preexposure levels (20).

Burnout is a syndrome whereby clinicians gradually lose concern about others and behave in a detached manner. Burnout has been quantified using the Maslach Burnout Inventory and is characterized by emotional exhaustion, cynicism, depersonalization, and a decline in work engagement (15). Thresholds for burnout vary; however, reports describe up to a median prevalence of 45% of PICU attending physicians in North America and 37% in both pediatric and adult ICU clinicians in the United Kingdom (21). Studies of critical care nurses identify that EOL situations, inadequate preparation for ethical and emotional aspects of practice, insufficient practice support, imperfect communication, workload, and uncertainty are factors that contribute to burnout (13, 22).

Compassion fatigue has been defined as one’s inability to give of oneself and to be aware of another’s suffering that may be precipitated by bearing witness to suffering and tragedy in everyday critical care work. Empathy is an essential component of a productive therapeutic relationship, but compassion fatigue disrupts healthy empathic connection and leads to indifference toward patients and families (16). Prevalence data for compassion fatigue are limited. In a review of the available compassion fatigue and burnout literature, van Mol et al (5) found that 7.3% of PICU clinicians and 40% of ICU nurses scored high for compassion fatigue on the Professional Quality of Care questionnaire.

The mutable nature of PICU clinician stress opens up opportunity where interventions may facilitate adaptive clinician responses thus improving resilience and mitigating other adverse consequences of workplace stressors (1). In contrast to the negatively framed states of moral distress, burnout, and compassion fatigue, resilience may be viewed as enabling healthcare professionals to effectively respond to stressors while optimizing opportunities for personal growth. Resilience is the ability of a person to manifest adaptive coping strategies that are matched to the situation while minimizing stress or distress, or to create personal meaning when circumstances are painful, overwhelming, or unreasonable (23). Resilience exists on a continuum, and resilient individuals are more efficient at resisting work-related stressors that can lead to moral distress, burnout, and depression, thus enabling them to continue to provide high-quality patient care.

We believe that the stressors present in PICU can create either virtuous and productive or destructive spirals. Virtuous spirals can create individual and team level resilience that may be enabled by well-selected proactive interventions. Destructive spirals may reduce professional effectiveness and personal well-being of clinicians and may be “managed” by responsive strategies (4). Resilience in healthcare has been viewed as a process rather than a trait and thus may be cultivated and attained. Cultivating resilience is the goal of interventions that promote clinician well-being such that stress responses are maintained in the adaptive zone (2, 24).

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ACQUIRING AND MAINTAINING CLINICIAN WELL-BEING

Interventions to promote and maintain clinician competence and well-being may be understood as proactive or responsive in nature (Table 1). Responsive interventions are deployed to mitigate adverse consequences after “events,” challenging situations, or other crises have occurred, whereas proactive interventions are implemented beforehand and intended to increase resilience of the frontline staff for managing future stressors. Here, we focus on stressors related to EOL care. The healthcare community has long recognized the importance of educating practitioners about EOL care (25). The interventions we describe in the context of EOL care can also assist when facing other stress-provoking phenomena such as difficult disclosures or disrupted relationships and include the domains of self-awareness and care, preparatory and relational skills, empathic presence, and the team approach (26).

TABLE 1

TABLE 1

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PROACTIVE WELL-BEING INTERVENTIONS

Proactive interventions address self-awareness, self-care, situational awareness, and build competence and confidence in one’s skills to provide EOL care (4). Personal initiatives for sustaining clinician wellness include self-care (e.g., exercise, rest, nutrition), self-awareness (e.g., reflective practices, mindfulness, journaling), cultivating emotional wellness (pet therapy) and a spiritual life, valuing relationships, and seeking self-education and conscious recognition of the degree of uncertainty inherent in the job (35). Studies of mindfulness interventions have shown decreased depression and anxiety and demonstrated higher empathy measures in mindfulness participants than in nonparticipants (36). Tools for self-awareness and self-care may be available through employers and professional organizations such as the “Mindfulness Project” at the Hospital for Sick Children (Toronto, ON, Canada) where structured support is offered to learn and practice mindfulness techniques (27).

Efforts to create and sustain work environments that support clinicians faced with potentially distressing practice situations are recommended. Human resource policies that support work-life balance, scheduling and staffing practices that ensure adequate resources and time away from work, educational and leadership opportunities are examples of proactive workplace interventions. Opportunities for clinicians to connect and affirm the humanism in PICU practice can uplift, sustain, and potentially counterbalance prevailing stress and compassion fatigue associated with work in PICU. Narratives and story building between families and staff can mitigate job-related stress and can assist in recognition and engagement of clinicians and teams (33).

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Preparedness and Situational Awareness

Preparatory and situational awareness interventions provide opportunities for individuals to build knowledge, skills, competence, and confidence in their abilities to provide sound EOL care and be better prepared for potentially distressing experiences.

Targeted education can have a positive impact on the clinician’s ability to manage situations where they are vulnerable to moral distress (37). Structured educational approaches including rounds and workshops, interprofessional conferences, and didactic learning can arm clinicians with powerful language and a realistic understanding of the larger landscape of caring for critically ill and potentially dying children.

Skills based resilience training can assist individuals in mitigating stress, overcoming adversity, and building important tools to better support themselves, their patients, and their peers. These programs aim to increase clinician capacity through enhancing moral sensitivity, self-reflection, and emotional regulation (38). Programs such as The Mindful Ethical Practice and Resilience Academy at John Hopkins University Berman School of Bioethics, the Program to Enhance Relational and Communication Skills at Boston Children’s Hospital, local interest groups, and journal clubs are examples (28, 29). Mentorship relationships, practice observation, and the opportunity for joint clinical practice have also been noted in some studies as effective contributors to learning in this domain (39). Multimodal approaches to education are suggested to address skills in facilitating family meetings, discussing EOL decisions, recognizing and addressing conflict, and influence clinicians from different disciplines, different experiences, and different worldviews (40).

Simulation can also be used successfully to acquire skill and test stress coping strategies (41, 42). In the context of EOL learning, the addition of actors to portray family members provides emotional authenticity while focusing learning on difficult aspects of EOL care such as difficult conversations (43). Simulation-based group training for pediatric fellows demonstrated posteducation improvements in relationship building, opening discussion, gathering information, communicating accurate information, and increased Palliative care consultations (44, 45). Simulation-based education can improve participants’ sense of preparation, confidence, communication, and relational skills, while reducing anxiety when providing care at the EOL (29, 46).

Experiential learning activities such as rounding can provide opportunities for safe discussion among frontline staff, individual, and team access to ethics consultation and be an avenue for the early recognition of morally charged situations. Rounding discussions can increase skill, self-perceptions of competence, and level of comfort with having conversations that address stressors (37).

The Schwartz Center has developed a robust, highly regarded, and well-disseminated “sit-down” rounds approach to educate and support healthcare professions and facilitate dialogue between interdisciplinary team members with focus on “the human dimension of medicine” (30). Care and Reflective Ethical Dialogue (CARED) rounds are a similar approach that uses clinical cases to stimulate discussion among the frontline clinicians. CARED rounds occur in the PICU and are facilitated by a bioethicist and clinical expert with the goal of taking a “moral and emotional pulse check” of the team to uncover developing tensions, coach for resilience, provide a space for clinician voice, and identify where other interventions and activities might be helpful (31).

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Relational Interventions

Relational interventions enhance the connections between clinicians, patients, and within teams to shape a supportive community of practice. These activities support meaning making and mindfulness at the point of care to facilitate clinician well-being. Taking a moment or performing “The Pause” at the time of a child’s death to mark and reflect on the experience of a life ended is an example of this type of intervention (32). Participants in “The Pause” report that the humanizing focus and honoring the team’s efforts to care are beneficial.

Similarly, activities that expose clinicians to the child and family experience can facilitate meaning and promote clinician mindfulness. The “Three Wishes Project” in which clinicians work to grant the last wishes of dying patients and the family-staff story captured in “Four Wishes for Aubrey” are two such approaches that have shown enhanced quality of the EOL experience and are meaningful and gratifying for staff members (33, 47).

Peer-to-peer support is an important strategy. Speaking with colleagues, reaching out to people outside work, and maintaining a cheerful attitude with others were reported as effective peer strategies (13). Formal peer support programs and facilitating spaces for safe and productive peer discussions can help PICU teams develop supportive peer connections. External facilitation or peer-facilitated dialogues can also help to normalize emotional responses, support the sharing of perspectives, and assist in the sharing of coping strategies between clinicians (48).

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RESPONSIVE INTERVENTIONS

Responsive supportive interventions are initiated related to specific situations or stressors that supersede the everyday routine stresses of PICU work. These interventions are situation-focused and context-customized interventions.

Adequately addressing the team’s current and ongoing needs requires that leaders be engaged and informed and that hospital systems are responsive. Effective communication within the team is paramount and should be optimized using established and secure information sharing activities to minimize speculation and confusion during complex and ethically challenging clinical situations. Communication-based interventions can inform, clarify, explore, and prevent misinformation related to specific situations. At the individual level, “checking-in” and “checking-out” procedures at start and completion of stressor-laden clinical shifts using a series of reflective questions may help clinicians focus and reframe any distress that they may be experiencing. Facilitated team-level case-based discussions can provide overarching context and address clinicians’ questions and may function as a “prebrief” for ongoing care. Educational components arising from individual or team dialogue can lead to interventions that address ethical reasoning, support reframing, clarify messages, and explain decision-making approaches. Activities that support communication and shared understanding can help in the current situation and build skills for future cases.

Interprofessional “debriefings” after significant events or situations can reduce the risk of burnout and increase the ability to manage grief, reduce situation-specific distress, and help maintain professional integrity (13). One structured approach is the Critical Incident Stress Management (CISM) (34) that involves facilitated “defusing” within 8 hours to 3 days of the event. This can be extended with facilitated “debriefing” held within 7 days by the CISM team and potentially a content expert (psychologist, psychiatrist, mental health specialist). These discussions focus on the lived experience of the clinicians rather than operational or technical learning related to the event. Goals of the dialogue are to review the facts of the situation, share thoughts and impacts, normalize reactions, explore potential coping strategies, and identify those who would benefit from further follow-up.

Establishing and nurturing a culture that supports individuals to identify their needs, ask questions, and voice their perspectives is essential for healthy ongoing interpersonal support. Allowing adequate time, space apart from clinical demands for clinicians to share and safely explore perspectives can enable peer-to-peer networking, mutual learning, and promote the building of shared professional identities (49). Additionally, using experts for consultation can provide individuals and the team with reflective opportunities and advice to effectively manage ethical dilemmas, legal tensions, emotional distress, or relational conflicts. Confidentiality, safety, suspending power dynamics, and trusting relationships between participants are essential ingredients for the success of such interventions. In our experience, consultants who are context aware are helpful for exploring the situation and providing informed direction to the team.

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CONCLUSIONS

The well-being of PICU clinicians may be compromised by recurrent exposure to work-related stressors and result in moral distress, burnout, compassion fatigue, and other adverse personal consequences. Conversely, these stressors can provide opportunities for personal and professional growth and development. It is possible to reframe the burden of providing EOL care and bring about positive meaning to the experience. Incorporation of proactive and responsive supportive interventions can increase PICU clinicians’ coping and resilience and mitigate adverse consequences. A creative, comprehensive, and sustained approach to the stressors inherent in the PICU can help assure that individuals and teams at are their best to provide effective, compassionate EOL care for our young patients and their families who need and depend on us.

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Keywords:

burnout; compassionate fatigue; end of life; moral distress; pediatric critical care; resilience

©2018The Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies