Supporting the Family After the Death of a Child or Adolescent.

Whether death occurs in the context of a chronic illness or as the sudden loss of a previously healthy infant, child, or adolescent, the death of a child is a highly stressful and traumatic event. Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family. The pediatrician has an important role in supporting the family unit after the death of a child through a family-centered, culturally humble, trauma-informed approach. This clinical report aims to provide the pediatrician with a review of the current evidence on grief, bereavement, and mourning after the loss of a child and with practical guidance to support family caregivers, siblings, and the child's community. Pediatricians have an important role in helping siblings and helping families understand sibling needs during grief. Ways for pediatricians to support family members with cultural sensitivity are suggested and other helpful resources in the community are described.

Ethical Considerations in Critically Ill Neonatal and Pediatric Patients.

The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting through a better understanding and application of ethical frameworks and communication strategies. We conducted a multidisciplinary panel session at the American Academy of Pediatrics National Conference and Exhibition in the fall of 2022 wherein we explored a myriad of ethical and communication considerations in this unique patient population, with congenital diaphragmatic hernia (CDH) as the congenital anomaly/disease framework. In this review, we will cover state of the art topics in ethics, communication, and palliative care including basic terminology, communication strategies such as trauma-informed communication, establishing/evolving goals of care, futility, medically inappropriate treatment, ethical frameworks, parental discretion, establishing milestones, internal/external intentions, and re-direction of care. These topics will be helpful to many specialties who are involved in the care of critically ill neonates and children including maternal fetal medicine, pediatrics, neonatology, pediatric critical care, palliative care, and pediatric surgery, along with the pediatric surgical subspecialties. We use a theoretical CDH case as an example and include the live audience responses from the interactive session. This primer provides overarching educational principles, as well as practical communication concepts, that can cultivate compassionate multidisciplinary teams, equipped to optimize family-centered, evidence-based compassionate communication and care.

Guidance for Pediatric End-of-Life Care.

The final hours, days, and weeks in the life of a child or adolescent with serious illness are stressful for families, pediatricians, and other pediatric caregivers. This clinical report reviews essential elements of pediatric care for these patients and their families, establishing end-of-life care goals, anticipatory counseling about the dying process (expected signs or symptoms, code status, desired location of death), and engagement with palliative and hospice resources. This report also outlines postmortem tasks for the pediatric team, including staff debriefing and bereavement.

Outcomes following perinatal palliative care consultation: a retrospective review.

OBJECTIVE: To inform clinical practice by describing a model of perinatal palliative care delivery within a fully staffed fetal health center (FHC) inside a freestanding children's hospital. STUDY DESIGN: The team conducted a retrospective chart review of the palliative care team (PaCT) database from FHC's inception in 2010 to 31 December, 2018, and surveyed the FHC neonatologists. RESULTS: PaCT consults in the FHC increased from 1 in 2010 to 102 in 2018. PaCT met 430 mothers for prenatal consultation. Of the 390 live-born infants, 172 died; 48 received comfort care only from birth; and 19 survived to discharge home with hospice. At the time of review, PaCT still follows 109 children met prenatally. PaCT discharged 96 patients that no longer required PaCT services. CONCLUSIONS: PaCT provides an integral service within the FHC as evidenced by the increasing volume of consultations, variety of care provided and perceived value by FHC neonatologists.

Lessons Learned: Identifying Items Felt To Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development.

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.

A quality improvement project to increase palliative care team involvement in pediatric oncology patients.

BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 2019 and March 2020. METHODS: Outcome measure was days from PPC consult to death; process measure was days from diagnosis to PPC consult. The project team surveyed oncologists to identify barriers. Plan-do-study-act cycles included establishing target diagnoses, offering education, standardizing documentation, and sending reminders. RESULTS: The 24-month baseline period included 30 patients who died and 25 newly diagnosed patients. The yearlong intervention period included six patients who died and 16 newly diagnosed patients. Interventions improved outcome and process measures. Targeted patients receiving PPC ≥30 days prior to death increased from 43% to 100%; median days from consult to death increased from 13.5 to 159.5. Targeted patients receiving PPC within 30 days of diagnosis increased from 28% to 63%; median days from diagnosis to consult decreased from 221.5 to 14. Of those without PPC consult ≤ 30 days after diagnosis, 17% had template documentation of the rationale. CONCLUSION: Interventions utilized met the global aim, outcome, and process measures. Use of QI methodology empowered providers to involve PPC. Poor template use was a barrier to identifying further drivers. Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families.

Pregnancy Accompanied by Palliative Care.

When prenatal screening reveals serious concerns for a baby, pediatric palliative care teams can help. Such teams meet with pregnant women and their families to build rapport, explain the medical concerns, delineate options, and outline anticipated outcomes. Throughout, palliative care teams strive for families to feel respected and supported in their grief.

Compassion Fatigue in Pediatric Emergency Department Staff.

INTRODUCTION: Compassion fatigue, a product of burnout (BO), secondary traumatic stress (STS), and compassion satisfaction (CS), is reduced capacity and interest in being empathetic for suffering individuals. Our objective was to determine prevalence of compassion fatigue in the pediatric emergency department. METHODS: We administered the Professional Quality of Life instrument, including BO, STS, and CS scales, to a convenience sample of pediatric emergency department staff (physicians, nurses, technicians, social workers, child life specialists). We categorized participants as having BO (high BO, low CS, moderate-low STS scores), STS (high STS, moderate-low BO, low CS), compassion fatigue (high STS and BO, low CS), and high-risk fatigue (high STS, moderate-low BO, low CS) and low risk (moderate-high CS, moderate-low BO, low STS) of compassion fatigue. RESULTS: One hundred seventy-seven staff (50% response rate) participated. The majority were white (90%) and female (88%), with participation highest among physicians (97%). Twenty-six percent had low CS scores, 26% had high BO scores, and 20% had high STS scores. Five percent met criteria for categorization as compassion fatigue, 24% for BO, and 24% for low risk of compassion fatigue. Current personal stress was associated with higher BO scores (P = 0.008) and secondary categorization as BO (P = 0.05). Recent work stress was associated with high STS scores (P = 0.03). DISCUSSION: Five percent of participants met criteria for compassion fatigue; a significant proportion had BO, STS, or CS scores, placing them at risk of compassion fatigue. Future studies should explore factors contributing to and interventions to minimize compassion fatigue.

The AAP Resilience in the Face of Grief and Loss Curriculum.

A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be a key element in transforming times of anxiety and grief into rewarding professional experiences. The need for this curriculum was identified by the American Academy of Pediatrics Section on Medical Students, Residents and Fellowship Trainees. A working group of educators developed this curriculum to address the professional attitudes, knowledge, and skills essential to thrive despite the many stressors inevitable in clinical care. Fourteen modules incorporating adult learning theory were developed. The first 2 sections of the curriculum address the knowledge and skills to approach disclosure of life-altering diagnoses, and the second 2 sections focus on the provider's responses to difficult patient care experiences and their needs to develop strategies to maintain their own well-being. This curriculum addresses the intellectual and emotional characteristics patient care medical professionals need to provide high-quality, compassionate care while also addressing active and intentional ways to maintain personal wellness and resilience.

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong?

Advances in prenatal diagnosis create a unique set of clinical ethics dilemmas. Doctors routinely obtain genetic screening, radiologic images, and biophysical profiling. These allow more accurate diagnosis and prognosis than has ever before been possible. However, they also reveal a wider range of disease manifestations than were apparent when prenatal diagnosis was less sophisticated. Sometimes, the best estimates of prognosis turn out to be wrong. The infant's symptoms may be less severe or more severe than anticipated based on prenatal assessment. We present a case in which a prenatal diagnosis was made of severe osteogenesis imperfecta, leading to a decision to induce delivery at 31 weeks. On postnatal evaluation, the infant's disease did not appear to be as bad as had been anticipated. We discuss the ethical implications of such diagnostic and prognostic errors.

Brief Behavioral Intervention to Improve Adolescent Sexual Health: A Feasibility Study in the Emergency Department.

OBJECTIVE: Although emergency department (ED) visits offer an opportunity to deliver brief behavioral interventions to improve health, provision of ED-based interventions targeting adolescent sexual health is uncommon. The objectives for this study were to evaluate the feasibility and preliminary effects of a novel sexual health service intervention for adolescents. METHODS: In this cross-sectional feasibility study, sexually active patients aged 14 to 19 years presenting to a Midwestern pediatric ED were recruited to receive an intervention to improve sexual health. The intervention, based on motivational interviewing (MI), included agenda setting, exploration of behaviors, a decisional balance exercise, tailored feedback, and provision of personalized health services (including condoms, prescription for emergency contraception, urine testing for Chlamydia trachomatis and Neisseria gonorrheae, and referral to the hospital-affiliated adolescent clinic). Data were collected before and after intervention administration and at a 3-month follow-up telephone interview. Surveys assessed sexual risk behaviors, satisfaction with the intervention, health care use, and demographics. Feasibility criteria were (1) subject-rated interventionist fidelity to MI principles (Likert scale 1 [strongly agree] to 4 [strongly disagree]), (2) subject satisfaction (Likert scale 1 [not at all] to 5 [very]), and (3) session duration (minutes, recorded by the interventionist). A secondary outcome was the proportion of subjects who completed at least 1 health service. Services provided at the adolescent clinic were determined by an electronic medical record review. Comparisons of responses between sex subgroups were analyzed using Χ test. RESULTS: From August to November 2012, 69 adolescents were approached, 66 (96%) completed the screening survey, and 24 (37%) reported previous sexual activity. Of those, 20 (83%) agreed to participate. The mean (SD) age was 16.2 (1.4) years; 60% were female. Most (78%) reported that the interventionist maintained high fidelity to MI principles and most (80%) were very satisfied with the intervention. Mean (SD) intervention length was 15.7 (2.2) minutes. Most subjects (65%) accepted 1 or more health services, including 42% who completed clinic follow-up. In the ED or the referral clinic, the following services were provided to the subjects: condoms (n = 11), emergency contraception prescription (n = 5), C. trachomatis/N. gonorrheae testing (n = 4), hormonal birth control provision (n = 2), and human immunodeficiency virus testing (n = 3). Fifteen subjects (75%) were reached for the 3-month follow-up, and condom use was maintained by 67% of those reporting sexual activity. CONCLUSIONS: This study demonstrated the feasibility and potential utility of an MI-based service navigation intervention to connect youth with point-of-care services as well as resources for ongoing sexual health needs.

A case of diprosopus: perinatal counseling and management.

Diprosopus is a rare congenital malformation associated with high mortality. Here, we describe a patient with diprosopus, multiple life-threatening anomalies, and genetic mutations. Prenatal diagnosis and counseling made a beneficial impact on the family and medical providers in the care of this case.

Accessing General and Sexual Healthcare: Experiences of Urban Youth.

Urban adolescents face many barriers to health care that contribute to health disparities in rates of sexually transmitted infections (STIs) and unintended pregnancy. Designing interventions to increase access to health care is a complex process that requires understanding the perspectives of adolescents. We conducted six focus groups to explore the attitudes and beliefs about general and sexual health care access as well as barriers to care among urban, economically disadvantaged adolescents. Participants first completed a written survey assessing health behaviors, health care utilization, and demographics. The discussion guide was based on the Theory of Planned Behavior and its constructs: attitudes, subjective norms, and perceived behavioral control. Transcripts of group discussions were analyzed using directed content analysis with triangulation and consensus to resolve differences. Fifty youth participated (mean age 15.5 years; 64% female; 90% African American). Many (23%) reported missed health care in the previous year. About half (53%) reported previous sexual intercourse; of these, 35% reported no previous sexual health care. Youth valued adults as important referents for accessing care as well as multiple factors that increased comfort such as good communication skills, and an established relationship. However, many reported mistrust of physicians and identified barriers to accessing care including fear and lack of time. Most felt that accessing sexual health care was more difficult than general care. These findings could inform future interventions to improve access to care and care-seeking behaviors among disadvantaged youth.

Adolescents and young adults with life-threatening illness: special considerations, transitions in care, and the role of pediatric palliative care.

This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.

Views on human papillomavirus vaccination: a mixed-methods study of urban youth.

While the human papillomavirus (HPV) vaccine has potential to protect against the majority of HPV-associated cancers, vaccination rates in the United States remain low. Racial/ethnic and economic disparities exist for HPV vaccination completion rates. We conducted a mixed-methods study using the theory of planned behavior framework to explore attitudes and beliefs about HPV vaccination among urban, economically disadvantaged adolescents. Fifty adolescents aged 14-18 years were recruited from community-based organizations to complete a written survey and participate in a focus group. The mean age was 15.5 ± 1.3 years; 98 % were African American or mixed race; 64 % were female; 52 % reported previous sexual intercourse; 40 % reported receipt of ≥1 HPV vaccine dose. The knowledge deficit about the HPV vaccine was profound and seemed slightly greater among males. Mothers, fathers and grandmothers were mentioned as important referents for HPV vaccination, but peers and romantic partners were not. Common barriers to vaccination were lack of awareness, anticipated side effects (i.e., pain), and concerns about vaccine safety. Characteristics associated with ≥1 vaccine dose were: having heard of the HPV vaccine versus not (65 vs. 20 %, p = 0.002) and agreeing with the statement "Most people I know would think HPV vaccine is good for your health" versus not (67 vs. 27 %, p = 0.007). Our work indicates a profound lack of awareness about HPV vaccination as well as the important influence of parents among urban, economically-disadvantaged youth. Awareness of these attitudes and beliefs can assist providers and health officials by informing specific interventions to increase vaccine uptake.