"At Least I Can Push this Morphine": PICU Nurses' Approaches to Suffering Among Dying Children.

CONTEXT: Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children's suffering. OBJECTIVES: We aimed to explore how PICU nurses identify, assess, and attend to EOL suffering. METHODS: Interpretive descriptive qualitative study with thematic analysis of virtual focus groups from a geographically diverse sample of PICU nurses. RESULTS: Nurses participated in five focus groups (N = 19). Most identified as White (89%) females (95%) with a range of 1-24 years of PICU experience and involvement in >10 EOL care cases (89%). Nurses described approaches to suffering within five themes: 1) Identifying and easing perceptible elements; 2) Recognizing and responding to subtleties moment-to-moment; 3) Acclimating to family interdependence; 4) Synchronizing nurse in-the-room insight with systemic complexity; and 5) Accounting for ambiguity. Nurses detailed elements of suffering they could "fix" with straightforward, external interventions (e.g., pain medication). More complex tasks like optimizing care within familial and interprofessional team relationships while navigating psychosocial responses from children and families challenged nurses. Nurses attempted to minimize EOL suffering amidst ambiguity and complexity using internal processes including managing the environment and titrating moment-to-moment care. CONCLUSIONS: While physical suffering may be remedied with direct nursing care, holistically attending to EOL suffering in the PICU requires both bolstering external processes and strengthening PICU nurses' internal resources. Improving psychosocial training and optimizing interprofessional care systems could better support dying children and their families.

Economic Hardship at the End of Life for Families of Children With Complex Chronic Conditions.

CONTEXT: Many children with complex chronic medical conditions (CCC), though living longer, die prematurely. Little is known about family economic hardship during end of life (EOL), nor associated differences in patterns of care. OBJECTIVES: To describe the prevalence, experience, and characteristics of families of patients with CCC who report great economic hardship (GEH), and associations with end-of-life care patterns and suffering. METHODS: We conducted a 183-item cross-sectional survey of bereaved parents of patients cared for at Boston Children's Hospital and chart reviews for each patient. Fifteen survey items on economic hardship related to financial and material hardships including food, housing, and utility insecurity. RESULTS: A total of 114 bereaved parents completed the survey (54% response rate) and economic hardship data was analyzed for 105. Nearly a fifth reported GEH. This group was characterized by fewer two parent households. Children from families with GEH had spent more time hospitalized than those without GEH. CONCLUSION: Economic burden on families of children with CCC correlates with higher health care utilization demonstrating the need for ameliorative resources and preventative measures.

The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life.

PURPOSE: Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief. We aimed to compare parent-perceived child suffering between diagnostic groups and identify related factors. DESIGN AND METHODS: We combined databases from 3 surveys of parents whose children who died following cancer, a complex chronic condition (CCC), or advanced heart disease. We built multivariable logistic regression models to identify relationships between parent-perceived child suffering and parent/child, illness experience, and care-related factors. RESULTS: Among 277 parents, 41% rated their child's suffering as moderate or high. Fifty-seven percent of parents whose child died from cancer reported that their child suffered "a lot" or "a great deal" at EOL, compared to 33% whose child died from a CCC, and 17% whose child died from heart disease (P < 0.001). Preparation for EOL symptoms was associated with decreased parent-perceived child suffering in multivariable modeling, with parents who were prepared for EOL 68% less likely to rate their child's suffering as high compared to those who felt unprepared (AOR: 0.32, CI [0.13-0.77], P = 0.013). CONCLUSIONS: Preparing families for their child's EOL may help mitigate lingering perceptions of suffering. Operationalizing preparation is crucial to optimizing family support during EOL care. IMPLICATIONS TO PRACTICE: Preparation for symptoms, and access to resources, including medical/psychosocial interventions and staff, may help ease parental perception of EOL suffering. Clinicians should prioritize preparing families for what to expect during a child's dying process.

Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit.

OBJECTIVE: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center cross-sectional survey of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021 was carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, and Wilcoxin rank sum tests were used to evaluate differences between parents who did and did not receive ACP. RESULTS: Out of eligible parents, 40 out of 146 (27%) responded to our survey. Most parents (31 out of 33, 94%) rated ACP as being very important and 27 out of 33 (82%) reported having ACP discussions during their child's admission. Parents preferred initial ACP discussions to occur early in their child's illness trajectory with members of the primary NICU team, with most parents' experiences aligning with these preferences. CONCLUSION: Parents value ACP discussions suggesting a further role for ACP in the NICU. KEY POINTS: · NICU parents value and participate in advance care planning discussions. · Parents prefer advance care planning with members of the primary NICU, specialty, and palliative care teams. · Parents prefer advance care planning early in their child's illness trajectory.

Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit.

OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULTS: A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION: ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS: · ACP is associated with improved parent-reported end-of-life outcomes.. · Parents conceptualize end-of-life care outcomes in nuanced ways.. · Families should have the opportunity to participate in ACP discussions that meet their unique needs..

The Case for Advance Care Planning in the NICU.

Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.

Relationships and Resources Supporting Children With Serious Illness and Their Parents.

OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effective relationships with the clinical team. Existing data suggest that there are opportunities for improvement. This study's aim was to explore important aspects of the relationships and resources that facilitate supportive serious illness care among children with CCCs and their parents. METHODS: We conducted semistructured interviews with adolescents and young adults (AYAs) with CCCs (aged 13-35 years), and parents of children with CCCs across 2 academic pediatric centers in the United States from December 2018 to April 2019. Transcripts were iteratively coded and analyzed by a team that included a sociologist, pediatric intensivist, and palliative care researcher by using inductive and deductive thematic analysis. RESULTS: Seven AYAs with CCCs and 9 parents participated (16 total; 1 AYA-parent dyad). Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to resources are information needs, making sense of life with illness, and supportive community. Many of the key categories and themes identified by participants had both tangible and intangible components and revealed the distinct yet interconnected nature of these aspects of care. CONCLUSIONS: Awareness and cultivation of relationship and resource support through innovative interventions and attention to those with increased needs in these areas may improve the serious illness care provided to children with CCCs and their parents.

An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers.

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Results: Of 291 eligible respondents, 48% (n = 140) completed the survey and 16% (n = 47) answered an open-ended question. Benefits included support in decision-making (n = 98; 70%) and identification of goals of care (n = 89; 64%). Barriers included perception of giving up on families (n = 59; 42%) and poor acceptability by other team members (n = 58; 41%). Respondents endorsed communication with the primary ICU team before (n = 122; 87%) and after (n = 129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.

Is this as good as it gets? Implications of an asymptotic mortality decline and approaching the nadir in pediatric intensive care.

Despite advances in medicine, some children will always die; a decline in pediatric intensive care unit (PICU) mortality to zero will never be achieved. The mortality decline is correspondingly asymptotic, yet we remain preoccupied with mortality outcomes. Are we at the nadir, and are we, thus, as good as we can get? And what should we focus to benchmark our units, if not mortality? In the face of changing case-mix and rising complexity, dramatic reductions in PICU mortality have been observed globally. At the same time, survivors have increasing disability, and deaths are often characterized by intensive life-sustaining therapies preceded by prolonged admissions, emphasizing the need to consider alternate outcome measures to evaluate our successes and failures. What are the costs and implications of reaching this nadir in mortality outcomes? We highlight the failings of our fixation with survival and an imperative to consider alternative outcomes in our PICUs, including the costs for both patients that survive and die, their families, healthcare providers, and society including perspectives in low resource settings. We describe the implications for benchmarking, research, and training the next generation of providers.Conlusion: Although survival remains a highly relevant metric, as PICUs continue to strive for clinical excellence, pushing boundaries in research and innovation, with endeavors in safety, quality, and high-reliability systems, we must prioritize outcomes beyond mortality, evaluate "costs" beyond economics, and find novel ways to improve the care we provide to all of our pediatric patients and their families. What is Known: • The fall in PICU mortality is asymptotic, and a decline to zero is not achievable. Approaching the nadir, we challenge readers to consider implications of focusing on medical and technological advances with survival as the sole outcome of interest. What is New: • Our fixation with survival has costs for patients, families, staff, and society. In the changing PICU landscape, we advocate to pivot towards alternate outcome metrics. • By considering the implications for benchmarking, research, and training, we may better care for patients and families, educate trainees, and expand what it means to succeed in the PICU.

Symptoms and Suffering at End of Life for Children With Complex Chronic Conditions.

CONTEXT: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). OBJECTIVES: To evaluate symptoms and suffering at EOL for children with noncancer, noncardiac CCCs as well as parental distress related to child suffering. METHODS: This study is a secondary data analysis of a cross-sectional, single-center survey of bereaved parents of children with CCCs who died between 2006 to 2015. The primary outcome was parent-reported child suffering in the final two days of life. RESULTS: Among 211 eligible parents contacted for participation, 114 completed the survey, and 99 had complete primary outcome data (participation rate 47%). Most children had congenital/chromosomal (42%) or progressive central nervous system (22%) conditions. Twenty-eight percent of parents reported high child suffering in the final two days of life. Parents reported that pain and difficulty breathing caused the greatest suffering for children and distress among themselves. Some parents also reported distress related to uncertainty about child suffering. Parents were less likely to report high child suffering if they were confident in knowing what to expect when their child was dying (AOR 0.20; 95% CI 0.07-0.60) or felt prepared for medical problems at EOL (AOR 0.12; 95% CI 0.04-0.42). CONCLUSION: Nearly one-third of parents of children with CCCs report high suffering in their child's final days of life. Parent preparedness was associated with lower perceived child suffering. Future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering.

Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients.

CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision. OBJECTIVE: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision. DESIGN: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies. RESULTS: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory. CONCLUSION: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values.

Factors Affecting Recruitment and Participation of Bereaved Parents in Research: A Brief Report.

CONTEXT: Inclusion of bereaved parents in survey-based research is essential to improving end-of-life care for children and their families. However, racial and ethnic minorities are vastly underrepresented in these studies. OBJECTIVES: Examine which child demographic characteristics are associated with parental participation in survey-based research. METHODS: Post-hoc secondary analysis of the Survey of Caring for Children with Complex Chronic Conditions. Demographic data were extracted from children's medical records for all eligible parents. Using logistic regression, associations were calculated between child demographics and level of parental study participation (enrolled and completed survey (full participation), enrolled but did not complete survey (incomplete participation), and declined participation). RESULTS: Two hundred nine children's parents were eligible for analysis, 114 (55%) fully participated, 36 (17%) incompletely participated, and 59 (28%) declined participation. Compared to those who fully participated, parents of non-white children were more likely to incompletely participate (OR 3.01, 95% CI 1.2-7.4), while those with public insurance only were more likely to decline participation (OR 2.1, 95% CI 1.08-4.03). Parents of children who had a documented limitation to resuscitation order were more likely to fully participate in the study (reference group) than incompletely participate (OR 0.42, 95% CI 0.2-0.91), while parents of children who had subspecialty palliative care involvement were less likely to decline participation in the study (OR 0.5, 95% CI 0.26-0.97). CONCLUSIONS: To ensure optimal end-of-life care for children, all parental voices should be heard. Recruitment of racial/ethnic minorities in bereaved parent survey-based studies can be improved by focusing on specific factors that are associated with parental survey completion.

Clinical Care Strategies That Support Parents of Children With Complex Chronic Conditions.

OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate supportive clinical care strategies identified by bereaved parents of children with complex chronic conditions. DESIGN: Qualitative analysis of 21 open-response items from the cross-sectional "Survey of Caring for Children with Complex Chronic Conditions" querying communication, decision-making, and end-of-life experiences. SETTING: Large tertiary care children's hospital. PATIENTS: Parents of children with complex chronic conditions who received care at a large academic institution and died between 2006 and 2015. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: An iterative multistage thematic analysis of responses was used to identify key themes pertaining to clinical care strategies that support parents of children with complex chronic conditions. Open-ended responses were analyzed from 110 of 114 (96%) of survey respondents. The majority of parents had children with congenital/chromosomal complex chronic conditions who died 3.9 years (interquartile range, 2.2-6.7 yr) prior to their parents' study participation. Although informational themes related to clear honest communication, consistent messaging, and enhanced care coordination were identified, parents emphasized the relational aspects of clinical care including inclusivity of their expertise about their child's needs, recognition of their unique experience as parents, and maintenance of connection with clinicians through bereavement. CONCLUSIONS: Clinical care strategies that support parents of children with complex chronic conditions reflect the unique needs of this group of children. Relational strategies such as including parents as experts in their child's care were paramount to parents of children with complex chronic conditions throughout their child's medical journey and at end of life.

Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment.

BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.

Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness.

OBJECTIVES: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. STUDY DESIGN: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components. RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions. CONCLUSIONS: The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals.

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions.

CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking. OBJECTIVES: To examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit. METHODS: In this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques. RESULTS: One hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1-6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported "a great deal" of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58-32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33-8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story. CONCLUSION: A majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.

Chronic Medication Use in Children Insured by Medicaid: A Multistate Retrospective Cohort Study.

BACKGROUND AND OBJECTIVES: Little is known about the use of chronic medications (CMs) in children. We assessed the prevalence of CM use in children and the association of clinical characteristics and health care resource use with the number of CMs used. METHODS: This is a retrospective study of children ages 1 to 18 years using Medicaid from 10 states in 2014 grouped by the annual number of CMs (0, 1, 2-4, 5-9, and ≥10 medications), which are defined as a dispensed ≥30-day prescription with ≥2 dispensed refills. Trends in clinical characteristics and health care use by number of CMs were evaluated with the Cochran-Armitage trend test. RESULTS: Of 4 594 061 subjects, 18.8% used CMs. CM use was 44.4% in children with a complex chronic condition. Across all children, the most common CM therapeutic class was neurologic (28.9%). Among CM users, 48.8% used multiple CMs (40.3% used 2-4, 7.0% used 5-9, and 0.5% used ≥10). The diversity of medications increased with increasing number of CMs: for 1 CM, amphetamine stimulants were most common (29.0%), and for ≥10 CMs, antiepileptics were most common (7.1%). Of $2.3 billion total pharmacy spending, 59.3% was attributable to children dispensed multiple CMs. Increased CM use (0 to ≥10 medications) was associated with increased emergency department use (32.1% to 56.2%) and hospitalization (2.3% to 36.7%). CONCLUSIONS: Nearly 1 in 5 children with Medicaid used CMs. Use of multiple CMs was common and correlated with increased health care use. Understanding CM use in children should be fundamentally important to health care systems when strategizing how to provide safe, evidence-based, and cost-effective pharmaceutical care to children.