Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care.

CONTEXT: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. OBJECTIVES: Explore and describe the family-level impact of pediatric serious illness. METHODS: We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016-2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. RESULTS: We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e., qualitative, quantitative), few studies focused on families as the analytic unit or used family-level analysis techniques. Study participants were usually from local dominant populations and less often from historically marginalized communities. CONCLUSION: The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families.

Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.

"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.

Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents.

BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions. METHODS: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire). RESULTS: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively). CONCLUSIONS: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

Partnering With Parents to Dismantle "Good-Death" Narratives.

This Viewpoint dismantles the notion of a "good death" in pediatrics using quotes from bereaved parents and provides actionable alternatives to improve quality end-of-life care for dying children and their families.

Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses.

OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses to contextualize patterns in quality of dying and death (QODD) scoring. DESIGN: This mixed methods study reports on a cross-sectional survey of PCICU staff involved in patient deaths. SETTING: Single, quaternary PCICU from 2019-2021. PARTICIPANTS: Multidisciplinary staff (bedside nurses, allied health professionals, and medical practitioners) rated QODD and voluntarily added free-text responses. We derived descriptive categories of free-text responses using content analysis. Response sentiment was classified as positive, negative or both positive and negative. We compared category and sentiment frequency by discipline, EOL medical intensity, years of experience and QODD score quartiles. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 60 deaths and 713 completed staff surveys, 269 (38%) contained free-text responses, including 103 of 269 (38%) from nurses. Of six qualitative categories (i.e., relational dynamics, clinical circumstances, family experiences, emotional expressions, temporal conditions, and structural/situational factors), relational dynamics was most frequent (173 responses). When compared by discipline, family experiences were more common in nursing responses than medical practitioners or allied health. High intensity was associated with infrequent discussion of family experience and greater focus on temporal conditions and clinical circumstances. Emotional expressions and temporal conditions were more common in lowest QODD quartile surveys. Although 45% staff responses contained both sentiments, relational dynamics and family experiences were more likely positive. Negative sentiments were more common in the lowest QODD quartile surveys and responses containing temporal conditions or structural/situational factors. CONCLUSIONS: Synergistic relationships between the multidisciplinary team and family shaped clinician's positive responses. Attention to team dynamics may be a crucial ingredient in interventions to improve EOL care. Our data support that team-based education initiatives should consider differential foci between disciplines and EOL characteristics.

Existential Care in Daily Nursing Practice.

ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.

Mixed-methods analysis of decisional regret in parents following a child's death from cancer.

BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models. RESULTS: Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories. CONCLUSIONS: Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.

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.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

"It's Hard Not to Have Regrets:" Qualitative Analysis of Decisional Regret in Bereaved Parents.

CONTEXT: Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. OBJECTIVES: We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. METHODS: We analyzed responses from a cross-sectional, dual site study of parents six to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents' responses. RESULTS: A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to five categories: treatments, including those pursued and/or not pursued (n = 57), decision-making processes (n = 35), relationships with their child and care team (n = 26), child suffering (n = 10), and end-of-life characteristics (n = 6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. CONCLUSION: Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.

Proxy ratings of psychological well-being in patients with primary brain tumors: A systematic review.

OBJECTIVE: This systematic review examined the agreement of proxy ratings of depression and anxiety in neuro-oncology patients. METHODS: Searches were conducted across 4 databases (MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science) to identify studies that compared proxy ratings (non-health care providers) of anxiety and depression in patients with brain cancer. Methodological quality and potential risk of bias were evaluated using the Joanna Briggs Institute Critical Appraisal Checklist. RESULTS: Out of the 936 studies that were screened for inclusion, 6 were included for review. The findings were mixed in terms of whether patient and proxy ratings were accurate (e.g., deemed equivalent), with many of the selected studies suggesting moderate level of agreement for several of the selected studies and, when both depression and anxiety were included, depression ratings from proxy raters were more accurate than for anxiety. We identified important limitations across the selected articles, such as low sample size, clarity on defining proxy raters and the different instructions that proxy raters are given when asked to assess patients' mood symptoms. CONCLUSIONS: Our findings suggest that proxy ratings of depression and anxiety should be interpreted with caution. While there is some agreement in proxy and patients with brain cancer ratings of depression and anxiety (greater agreement for depression), future work should recruit larger samples, while also remaining mindful of defining proxy raters and the instructions given in collecting these ratings.

"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit.

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation.

BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES: To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU. METHODS: A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted. RESULTS: This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients' comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, -2; peak, -1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death. CONCLUSION: Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents' ability to connect with their child. Future research should incorporate parents' perspectives.

Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit.

OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. RESEARCH DESIGN: Qualitative description with content analysis. SETTING: Interviews with eight parents of eight children who died in the paediatric intensive care unit 7-11 years prior. MAIN OUTCOME MEASURES: Descriptive categories of parents' perceptions of end-of-life needs. FINDINGS: Parents identified four shifting and intersecting categories of needs: To be together, To make sense of the child's evolving clinical care, To manage institutional, situational, and structural factors, and To navigate an array of emotions in a sterile context. Being closely connected with the child was highly important, but often intersected with other domains, requiring nurses' support. Parents' memories demonstrated persistent uncertainty about their child's end-of-life care that influenced their long-term grief. CONCLUSIONS: Intersections between parent-identified care needs suggest potential mechanisms to strengthen nurses' care for dying children. Equipped with the knowledge that the parent-child bond often shapes parents' priorities; nurses should aim to facilitate connections amidst paediatric intensive care unit processes. Ongoing uncertainty in parents' adaptation to loss suggests that attention to instances when needs intersect can have a lasting impact on parents' grief.

"I Had a Lot More Planned": The Existential Dimensions of Prognosis Communication with Adults with Advanced Cancer.

Background: Communication about prognosis is a key ingredient of effective palliative care. When patients with advanced cancer develop increased prognostic understanding, there is potential for existential distress to occur. However, the existential dimensions of prognosis communication are underexplored. Objective: To describe the existential dimensions of prognosis communication in naturally-occurring palliative care conversations. Methods: This study was an explanatory sequential mixed methods design. We analyzed a random subset of patients from the Palliative Care Communication Research Initiative (PCCRI) parent study (n = 34, contributing to 45 palliative care conversations). Data were based on audio-recorded and transcribed inpatient palliative care conversations between adults with advanced cancer, their families, and palliative care clinicians. We stratified the study sample by levels of prognosis communication, and qualitatively examined patterns of existential communication, comparing the intensity, frequency, and content, within and across levels. Results: Existential communication was more common, and of stronger intensity, within conversations with higher levels of prognosis communication. Conversations with more prognosis communication appeared to exhibit a shift toward the existential and away from the more physical nature of the serious illness experience. Conclusion: Existential and prognosis communication are intimately linked within palliative care conversations. Results highlight the multiplicity and mutuality of concerns that arise when contemplating mortality, drawing attention to areas of palliative care communication that warrant future research.

Defining a "Good Death" in the Pediatric Intensive Care Unit.

BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely. OBJECTIVE: To synthesize parents' perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents. METHODS: A concept analysis was conducted of parents' views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child's death in the inpatient setting were identified through database searches. RESULTS: The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept. CONCLUSIONS: Conceptual knowledge of what constitutes a good death from a parent's perspective may allow pediatric nurses to care for dying children in a way that promotes parents' coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child.