RESUMEN
Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload, and multiple potentially life-altering decision points. In addition to clinical acumen, families desire clear and consistent communication, supported decision-making, a multidisciplinary approach to psychosocial supports throughout an admission, and comprehensive bereavement support after a death. Distinct from their adult counterparts, pediatric providers care for a broader set of rare diagnoses with limited prognostic information. Decision-making requires its own ethical framework, with substitutive judgment giving way to the best interest standard as well as "good parent" narratives. When a child dies, bereavement support is often needed for the broader community. There will always be a role for specialist palliative care consultation in the pediatric neurocritical care unit, but the care of every patient and family will be well served by improving these primary palliative care skills.
RESUMEN
Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy's narrative, situated in the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics.
RESUMEN
Children with chronic critical illness (CCI) represent the sickest subgroup of children with medical complexity. In this article, we applied a proposed definition of pediatric CCI to assess point prevalence in medical, cardiovascular, and combined pediatric intensive care units (PICUs), screening all patients admitted to six academic medical centers in the United States on May 17, 2017, for pediatric CCI (PCCI) eligibility. We gathered descriptive data to understand medical complexity and resource needs of children with PCCI in PICUs including data regarding hospitalization characteristics, previous admissions, medical technology, and chronic multiorgan dysfunction. Descriptive statistics were used to characterize the study population and hospital data. The study cohort was divided between PICU-prolonged (stay > 14 days) and PICU-exposed (any time in PICU); comparative analyses were conducted. On the study day, 185 children met inclusion criteria, 66 (36%) PICU-prolonged and 119 (64%) PICU-exposed. Nearly all had home medical technology and most ( n = 152; 82%) required mechanical ventilation in the PICU. The PICU-exposed cohort mirrored the PICU-prolonged with a few exceptions as follows: they were older, had fewer procedures and surgeries, and had more recurrent hospitalizations. Most ( n = 44; 66%) of the PICU-prolonged cohort had never been discharged home. Children with PCCI were a sizable proportion of the unit census on the study day. We found that children with PCCI are a prevalent population in PICUs. Dividing the cohorts between PICU-prolonged and PICU-exposed helps to better understand the care needs of the PCCI population. Identifying and studying PCCI, including variables relevant to PICU-prolonged and PICU-exposed, could inform changes to PICU care models and training programs to better enable PICUs to meet their unique needs.
RESUMEN
OBJECTIVE: Bronchopulmonary dysplasia (BPD) is the most common late morbidity for premature infants. Continuous neuromuscular blockade (CNMB) is suggested for the most unstable phase of BPD, despite no outcome data. We explored the association between duration of CNMB for severe BPD and mortality. DESIGN: Medical record review of children <5 years old admitted from 2016 to 2022 with BPD and one or more course of CNMB for ≥14 days. RESULTS: Twelve children received a total of 20 episodes of CNMB for ≥14 days (range 14-173 d) during their hospitalization. Most (10/12) were born at <28 weeks' gestation and most (11/12) with birth weight <1,000 g; 7/12 were of Black race/ethnicity. All were hospitalized since birth. Most (10/12) were initially transferred from an outside neonatal intensive care unit (ICU), typically after a >60-day hospitalization (9/12). Half (6/12) of them had a ≥60-day stay in our neonatal ICU before transferring to our pediatric ICU for, generally, ≥90 days (8/12). The primary study outcome was survival to discharge: 2/12 survived. Both had shorter courses of CNMB (19 and 25 d); only one child who died had a course ≤25 days. Just two infants had increasing length Z-scores during hospitalization; only one infant had a final length Z-score > - 2. CONCLUSION: In this case series of infants with severe BPD, there were no survivors among those receiving ≥25 days of CNMB. Linear growth, an essential growth parameter for infants with BPD, decreased in most patients. These data do not support the use of ≥25 days of CNMB to prevent mortality in infants with severe BPD. KEY POINTS: · This is a case series of neuromuscular blockade for severe BPD.. · Neuromuscular blockade did not improve linear growth.. · Ten out of 12 infants who were on prolonged neuromuscular blockade died..
RESUMEN
Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative care in adult urology. This underutilization is further exacerbated in pediatric urology, and palliative care in pediatric urology remains an underexplored area despite the prevalence of several life-limiting conditions in this patient population. This paper highlights the potential need for palliative care intervention in a variety of urologic conditions in the pediatric population, including congenital lower urinary tract obstruction, neurogenic bladder dysfunction, exstrophy-epispadias complex, and congenital bilateral renal agenesis. Each condition poses unique challenges that can be addressed with the inclusion of a palliative care team, including decision-making spanning prenatal-neonatal-pediatric periods, acute and chronic symptom management, family relations, body image issues, risk of recurrent hospitalizations and surgeries, and potentially fatal complications. Alongside standard urologic interventions, palliative care can serve as an additional means of addressing physical and psychosocial symptoms experienced by pediatric urology patients to enhance the quality of life of patients and their families.
Asunto(s)
Cuidados Paliativos , Pediatría , Enfermedades Urológicas , Humanos , Niño , Enfermedades Urológicas/terapia , UrologíaRESUMEN
OBJECTIVE: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness. METHODS: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys. RESULTS: 33 parents (16 English-speaking, 17 Spanish-speaking) and 34 clinicians participated. Enrollment was better for families than clinicians (78% vs. 43%). Video acceptability was high: families and clinicians endorsed verisimilitude of depicted hospitalization challenges for chronic critical illness. All families felt the videos would help other families, all clinicians felt they would help other clinicians. Families gained expectations for the hospital course, discovered resources for hospitalization challenges, and learned there are other families in similar situations. Clinicians learned to recognize chronic critical illness, and how families experience hospitalizations, transfers, and discharges. CONCLUSION: Educational videos about pediatric chronic critical illness were overall feasible, acceptable, and educational for hospitalized families and clinicians. PRACTICE IMPLICATIONS: Just-in-time hospital education about pediatric chronic critical illness is valuable to families and clinicians; next steps are to assess potential to reduce gaps in care of children with chronic critical illness.
Asunto(s)
Enfermedad Crítica , Padres , Niño , Humanos , Enfermedad Crítica/terapia , Proyectos Piloto , Hospitalización , Alta del Paciente , Enfermedad CrónicaRESUMEN
BACKGROUND AND OBJECTIVE: Parents facing the decision of whether to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") report wanting information about what to expect for life at home for their child. The study objective is to explore parent descriptions of the child experience of home ventilation to increase awareness for clinicians in the inpatient setting caring for these children. METHODS: Semistructured interviews were conducted using purposive sampling of parents with children who initiated home ventilation within the previous 5 years from 3 geographically diverse academic medical centers. RESULTS: We interviewed 21 families from 3 geographic regions in the United States. About 75% of children had respiratory failure in the first year of life, 80% had medical complexity, and half had severe neurologic impairment. Five domains emerged regarding parent perceptions of their child's experience of home ventilation: (1) health and well-being; (2) development; (3) adaptation; (4) mobility and travel; and (5) relationships. Within each domain, several themes were identified. For each theme, there was a positive and negative subtheme to illustrate how the child's experience was modified by home ventilation. Parent descriptions were generally positive, however, in all domains and to varying degrees, parents expressed negative aspects of home ventilation. CONCLUSIONS: By providing information about the realistic experiences of children using home ventilation, clinicians can support families in the inpatient setting as they face this complex decision. Balanced information about home ventilation is critical to enhancing clinician counseling so that families may benefit from the perspectives of experienced parents.
Asunto(s)
Insuficiencia Respiratoria , Traqueostomía , Niño , Humanos , Estados Unidos , Padres/psicología , Respiración Artificial , Insuficiencia Respiratoria/terapia , ConsejoRESUMEN
Communication skills training is a core competency for neonatal-perinatal medicine (NPM) fellows, yet many neonatology fellowship programs do not have formal communication skills curricula. Since the late 1990s, experiential learning that includes role-play and simulation has become the standard for communication training. NPM fellows who receive simulation-based communication skills training report greater comfort with difficult conversations in the NICU. Most communication skills studies in neonatology focus on antenatal counseling, with some studies regarding family meetings and end of life conversations. Published examples for simulation-based communication skills curricula exist, with ideas for adapting them to meet the needs of local resources.
Asunto(s)
Neonatología , Recién Nacido , Humanos , Femenino , Embarazo , Neonatología/educación , Becas , Relaciones Profesional-Familia , Curriculum , ComunicaciónRESUMEN
BACKGROUND: We aimed to characterize the caregiver experience in the detection and evaluation of pediatric cerebrospinal shunt malfunction. METHODS: In this descriptive qualitative study, we recruited English-speaking caregivers of children aged five years or less in collaboration with a stakeholder organization. Semistructured interviews were completed; content targeted the caregiver experience of shunt malfunction. Interviews were audio-recorded, transcribed, and deidentified. Qualitative data were analyzed using a conventional content analysis approach. RESULTS: We enrolled 20 caregivers (n = 20 mothers). The median child age at the time of the interview was 2.8 years; about half (n = 11) were born prematurely and the majority (n = 15) had shunts placed at age less than six months. Caregiver experiences of shunt malfunction were grouped into three major themes: (1) my error could be life or death: the high stakes of shunt malfunction and the ambiguity of malfunction symptoms exacerbated baseline caregiver vigilance; (2) finding and engaging people who can help: hurdles during malfunction evaluation included locating trusted clinicians and advocating for parental intuition; and (3) how the shunt defines our family: caregivers described evolving expertise and modifications made to everyday life due to the threat of malfunction. CONCLUSIONS: In this study, caregivers highlighted the challenges associated with recognizing shunt malfunction, accessing necessary treatment, and the impact of their child's shunt on family life. Future work should leverage these findings to inform counseling about shunt malfunction, develop interventions to better support families in shunt malfunction identification, and educate medical providers.
Asunto(s)
Cuidadores , Madres , Humanos , Niño , Femenino , Lactante , Padres , Investigación CualitativaRESUMEN
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
RESUMEN
BACKGROUND: The decision to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") is complex and parents often desire information from other parents who have faced this decision. However, parent-to-parent communication is challenging as it is difficult to connect new families to experienced families in ways that optimize informed, balanced decision-making. OBJECTIVE: Create a parent-to-parent web-based tool to support decision-making about pediatric home ventilation. PATIENT INVOLVEMENT: The tool was created based on interviews and feedback from parents. METHODS: We interviewed parents who previously chose for, or against, home ventilation for their child. Interview themes and family comments guided website development. Viewer feedback was solicited via an embedded survey in the tool. RESULTS: We created 6 composite character families to communicate 6 themes about home ventilation: 1) Considering treatment options, 2) Talking with medical team, 3) Impact on life at home, 4) Impact on relationships, 5) Experience for the child, and 6) If the child's life is short. Nine families who reviewed the draft tool felt it would have helped with their decision about home ventilation. Specifically, it supported families in thinking through what was "most important about their child's breathing problems" (7 of 9 parents) and feeling "more at peace with the decision" (8 of 9 parents). Between 6/1/20-12/31/22, nearly 5500 viewers have accessed the tool and 56 viewers completed the survey (including 13 families and 39 clinicians). Feedback from experienced families and clinicians reported the tool taught them something new. DISCUSSION: This novel parent-to-parent tool shows promise for expanding access to balanced, family-centered information about pediatric home ventilation. PRACTICAL VALUE: The diverse stories and decisions let parents access multiple family perspectives. The tool's focus is on family-centric information that parents reported was usually missing from clinician counseling. FUNDING: This work was supported by the National Palliative Care Research Center.
Asunto(s)
Padres , Respiración Artificial , Niño , Humanos , Padres/psicología , InternetRESUMEN
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic medical technologies, fractured post-NICU healthcare, gaps in home health services, and family strain-are common and predictable. This means that raising family and NICU team awareness of these issues, and putting plans in place to address them, should occur for every NICU infant with CCI. Pediatric palliative care is one resource that can be engaged within the NICU to support the child and family through NICU discharge and beyond. This review examines what is known about the unique needs of infants who leave the NICU with CCI and the role that NICU-initiated palliative care involvement can play for these patients, families, clinicians, and the health care system.
Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Cuidados Paliativos , Recién Nacido , Lactante , Humanos , Niño , Enfermedad Crítica/terapia , Enfermedad Crónica , SobrevivientesRESUMEN
Objective: This study aimed to describe shunt malfunction symptoms in children ≤5 years old. Results: In a national survey of 228 caregivers, vomiting (23.1%), irritability (20.8%), and sleepiness (17.2%) were the most frequent symptoms of malfunction. These symptoms also occurred in over 1/3 of "false alarms" experienced by 75% of respondents. Compared with malfunctions, irritability (OR = 1.39, 95% CI [1.05, 1.85], p = 0.022) and fever (OR = 2.22, 95% CI [1.44, 3.44], p < 0.001) were more likely false alarms. Caregivers counseled about "most" symptoms were more confident detecting malfunctions than those informed of "some" (p = 0.036). The majority of caregivers (85%) first contacted a neurosurgeon with concerns about malfunction, followed by neurologists (22%) and family/friends (19%). Most (85%) struggled to differentiate malfunction from regular development. Conclusions: Vomiting, irritability, and sleepiness were the most common symptoms of shunt malfunction and false alarms for children ≤5 years. Most caregivers reported challenges differentiating malfunctions from their child's development.
RESUMEN
CONTEXT: Despite high rates of mortality among infants in the Southern U.S., little is known about the timing of pediatric palliative care (PPC), the intensity of end-of-life care, and whether there are differences among sociodemographic characteristics. OBJECTIVES: To describe PPC patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. METHODS: Medical record abstraction of infant decedents who received PPC consultation in two NICUs (in Alabama and Mississippi) from 2009 to 2017 (n = 195) including clinical characteristics, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. RESULTS: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (P = 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (P = 0.04). CONCLUSION: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Lactante , Recién Nacido , Humanos , Niño , Cuidado Intensivo Neonatal , Estudios Retrospectivos , Cuidado Terminal/métodos , Cuidados Paliativos/métodosRESUMEN
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. Objective: To describe the rationales of families who decline home ventilation. Design: Semi-structured interview study. Setting/Subjects: We interviewed 16 families in hospitals across 3 U.S. states, identified by their clinicians as previously deciding to not pursue home ventilation via tracheostomy within the past five years. Measurements: Targeted content and narrative analyses were used to understand family intentions and reasons for declining. Results: The clinical and social context varied among the 16 families in this study. Families' intentions in saying "no" fell into two categories: (1) definitive "No": Families who stood firm on in their decision and (2) contingent "No": Families who may consider this in the future. Families described four reasons why their child did not receive home ventilation: (1) concern about medical impacts, (2) concern about physical and/or communication restrictions, (3) concern that there would be no clear health benefit, and (4) concern about no clear meaningful life. Most families mentioned all four reasons, but concern about no clear meaningful life predominated. Conclusions: Though these families did not see home ventilation as an appropriate option, each reported a complex interplay of intentions behind and reasons for declining. Clinicians who counsel families about home ventilation could share the reasons that families commonly decline this intervention to facilitate a balanced discussion.
Asunto(s)
Comunicación , Hospitales , Humanos , Niño , FemeninoRESUMEN
CONTEXT: Ethical and professional guidelines support withholding/discontinuing medically provided nutrition and hydration (MPNH) for children in specific scenarios yet literature shows many providers do not support this practice. One reason clinicians continue MPNH is worry about child suffering. OBJECTIVES: This study was designed to assess clinician observations of infant/child experience following withholding/discontinuing MPNH. METHODS: This study is a national survey of clinicians who had personally medically-managed an infant/child during the process of withholding/discontinuing MPNH. Survey disseminated via Twitter, email, and Facebook. Descriptive and content analyses were performed. RESULTS: Responses from 195 clinicians represented experiences with 900+ children, with over half of those experiences occurring within the prior year. Palliative care was consulted in 76% of cases. Most clinicians reported that in their patients, comfort (80/142, 56%) and peacefulness (89/143, 62%) increased during withholding/discontinuing MPNH, as did dry lips/mouth (109/143, 76%). Most observed decreased work of breathing (58/142, 63%) and respiratory secretions (90/142, 63%). The perceived need for pain medication typically remained unchanged (54/142, 38%). When asked to describe the dying process during withholding/ discontinuing MPNH, the most common response was "peaceful." Clinicians also observed increasing levels of parent relief (78/137, 57%), peace (77/137, 56%), as well as anxiety (74/137, 54%). CONCLUSION: Respiratory, gastrointestinal symptoms, signs of peacefulness, and comfort improved for most infants and children during withholding/withdrawing MPNH. Aside from dry lips/mouth, fewer than 10% of children were perceived to have increased symptom distress. This study's findings are consistent with adult data and failed to detect a compelling reason to forgo withholding/discontinuing MPNH solely due to concern about child comfort.
Asunto(s)
Cuidados Paliativos , Privación de Tratamiento , Lactante , Adulto , Niño , Humanos , Dolor , Estado Nutricional , AnsiedadRESUMEN
PURPOSE: This study aimed to explore the family experience and associated challenges of transporting children with medical complexity (CMC) in personal vehicles. METHODS: Parents/guardians of CMC in Maryland were recruited to participate in an audiotaped, semi-structured interview. Conventional content analysis was applied to transcripts. RESULTS: Data from 29 participants who indicated use of personal vehicles to transport their CMC were included in the analysis. Transportation challenges were common, and analysis revealed the following themes: 1) challenges transitioning in/out of the vehicle: excess planning time, child factors (e.g., weight), equipment factors (e.g., wheelchair), physical and environmental factors, 2) safety and comfort: CMC positioning/restraints, driver distraction, 3) financial challenges: travel costs related to medical care, accessible modification costs, transportation equipment costs, insurance delays in equipment coverage, 4) adverse family repercussions: parental physical health, isolation, and 5) evolving and unpredictable transportation needs. CONCLUSION: Families with CMC experience multifactorial challenges that impact all phases of travel in personal vehicles and negatively impact child and family safety, access to community and medical care, family finances, and overall well-being. Health care providers can support families by identifying transportation challenges that contribute to health inequities, tailoring solutions to the family's unique needs, and advocating at a policy level to promote change.
Asunto(s)
Padres , Silla de Ruedas , Niño , Humanos , Personal de Salud , Equipo Médico DurableRESUMEN
BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.