Where do families turn? Ethical dilemmas in the care of chronically critically Ill children.

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.

A Snapshot of Chronic Critical Illness in Pediatric Intensive Care Units.

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.

The Changing Landscape in Pediatric Hospitals: A Multicenter Study of How Pediatric Chronic Critical Illness Impacts NICU Throughput.

OBJECTIVE: Pediatric inpatient bed availability is increasingly constrained by the prolonged hospitalizations of children with medical complexity. The sickest of these patients are chronic critically ill and often have protracted intensive care unit (ICU) stays. Numbers and characteristics of infants with chronic critical illness are unclear, which undermines resource planning in ICU's and general pediatric wards. The goal of this study was to describe infants with chronic critical illness at six academic institutions in the United States. STUDY DESIGN: Infants admitted to six academic medical centers were screened for chronic, critical illness based on a combination of prolonged and repeated hospitalizations, use of medical technology, and chronic multiorgan involvement. Data regarding patient and hospitalization characteristics were collected. RESULTS: Just over one-third (34.8%) of pediatric inpatients across the six centers who met eligibility criteria for chronic critical illness were <12 months of age. Almost all these infants received medical technology (97.8%) and had multiorgan involvement (94.8%). Eighty-six percent (115/134) had spent time in an ICU during the current hospitalization; 31% were currently in a neonatal ICU, 34% in a pediatric ICU, and 17% in a cardiac ICU. Among infants who had been previously discharged home (n = 55), most had been discharged with medical technology (78.2%) and nearly all were still using that technology during the current readmission. Additional technologies were commonly added during the current hospitalization. CONCLUSION: Advanced strategies are needed to plan for hospital resource allocation for infants with chronic critical illness. These infants' prolonged hospitalizations begin in the neonatal ICU but often transition to other ICUs and general inpatient wards. They are commonly discharged with medical technology which is rarely weaned but often escalated during subsequent hospitalizations. Identification and tracking of these infants, beginning in the neonatal ICU, will help hospitals anticipate and strategize for inpatient bed management. KEY POINTS: · 35% of inpatients with chronic critical illness are infants.. · Nearly 90% of these infants spend some time in an intensive care unit.. · 78% are discharged with medical technology..

Delirium in Children Undergoing Hematopoietic Cell Transplantation: A Multi-Institutional Point Prevalence Study.

Introduction: Delirium occurs frequently in adults undergoing hematopoietic cell transplantation, with significant associated morbidity. Little is known about the burden of delirium in children in the peri-transplant period. This study was designed to determine delirium rates, define risk factors (demographic and treatment related), and establish feasibility of multi-institutional bedside screening for delirium in children undergoing hematopoietic cell transplant. Methods: This is a multi-institutional point prevalence study. All subjects were prospectively screened for delirium twice daily using the Cornell Assessment of Pediatric Delirium over a 10-day period. De-identified data, including basic demographics and daily characteristics, were extracted from the electronic medical record. Results: Eleven North American institutions were included, 106 children were enrolled, and 883 hospital days were captured. Delirium screening was successfully completed on more than 98% of the study days. Forty-eight children (45%) developed delirium over the course of the 10-day study. Children were diagnosed with delirium on 161/883 study days, for an overall delirium rate of 18% per day. Higher delirium rates were noted in children <5 years old (aOR 0.41 for children over 5 years), and in association with specific medications (melatonin, steroids, and tacrolimus). Conclusion: Delirium was a frequent occurrence in our study cohort, with identifiable risk factors. Delirium screening is highly feasible in the pediatric hematopoietic cell transplant patient population. A large-scale prospective longitudinal study following children throughout their transplant course is urgently needed to fully describe the epidemiology of pediatric delirium, explore the effects of delirium on patient outcomes, and establish guidelines to prevent and treat delirium in the peri-transplant period.

Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness.

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, disruption of family life, and the intensive utilization of resources-combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay. In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to make clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital.

"Stuck in the ICU": Caring for Children With Chronic Critical Illness.

OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes. SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA). SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness. INTERVENTIONS: Telephone or in-person interviews. MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients. CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations.

OBJECTIVES: The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI). METHODS: Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes. RESULTS: All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites. CONCLUSIONS: Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.

Professional Responsibility, Consensus, and Conflict: A Survey of Physician Decisions for the Chronically Critically Ill in Neonatal and Pediatric Intensive Care Units.

OBJECTIVE: To describe neonatologist and pediatric intensivist attitudes and practices relevant to high-stakes decisions for children with chronic critical illness, with particular attention to physician perception of professional duty to seek treatment team consensus and to disclose team conflict. DESIGN: Self-administered online survey. SETTING: U.S. neonatal ICUs and PICUs. SUBJECTS: Neonatologists and pediatric intensivists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We received 652 responses (333 neonatologists, denominator unknown; 319 of 1,290 pediatric intensivists). When asked about guiding a decision for tracheostomy in a chronically critically ill infant, only 41.7% of physicians indicated professional responsibility to seek a consensus decision, but 73.3% reported, in practice, that they would seek consensus and make a consensus-based recommendation; the second most common practice (15.5%) was to defer to families without making recommendations. When presented with conflict among the treatment team, 63% of physicians indicated a responsibility to be transparent about the decision-making process and reported matching practices. Neonatologists more frequently reported a responsibility to give decision making fully over to families; intensivists were more likely to seek out consensus among the treatment team. CONCLUSIONS: ICU physicians do not agree about their responsibilities when approaching difficult decisions for chronically critically ill children. Although most physicians feel a professional responsibility to provide personal recommendations or defer to families, most physicians report offering consensus recommendations. Nearly all physicians embrace a sense of responsibility to disclose disagreement to families. More research is needed to understand physician responsibilities for making recommendations in the care of chronically critically ill children.

Symptoms of Apathy Independently Predict Incident Frailty and Disability in Community-Dwelling Older Adults.

OBJECTIVE: Although depressive symptoms are widely recognized as a predictor of functional decline among older adults, little is known about the predictive utility of apathy in this population. We prospectively examined apathy symptoms as predictors of incident slow gait, frailty, and disability among non-demented, community-dwelling older adults. METHODS: We examined 2 independent prospective cohort studies-the LonGenity study (N = 625, 53% women, mean age = 75.2 years) and the Central Control of Mobility in Aging (CCMA) study (N = 312, 57% women, mean age = 76.4 years). Individuals were recruited from 2008 to 2014. Apathy was assessed using 3 items from the Geriatric Depression Scale. Slow gait was defined as 1 standard deviation or more below age- and sex-adjusted mean values, frailty was defined using the Cardiovascular Health Study criteria, and disability was assessed with a well-validated disability scale. RESULTS: The prevalence of apathy was 20% in the LonGenity cohort and 26% in the CCMA cohort. The presence of apathy at baseline, independent of depressive symptoms (besides apathy), increased the risk of developing incident slow gait (hazard ratio [HR] = 2.10; 95% CI, 1.36-3.24; P = .001), frailty (HR = 2.86; 95% CI, 1.96-4.16; P < .001), and disability (HR = 3.43; 95% CI, 1.73-6.79; P < .001) in the pooled sample. These associations remained significant when accounting for demographics, medical illnesses, and cognitive function. CONCLUSIONS: Apathy is associated with increased risk of developing slow gait, frailty, and disability, independent of other established risk factors, in non-demented older adults. Apathy should be screened for as a potentially preventable cause of functional decline in clinical psychiatric settings.

Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy.

Chronically critically ill pediatric patients represent an emerging population in NICUs and PICUs. Chronic critical illness has been recognized and defined in the adult population, but the same attention has not been systematically applied to pediatrics. This article reviews what is currently known about pediatric chronic critical illness, highlighting the unique aspects of chronic critical illness in infants and children, including specific considerations of prognosis, outcomes, and decision-making. We propose a definition that incorporates NICU versus PICU stays, recurrent ICU admissions, dependence on life-sustaining technology, multiorgan dysfunction, underlying medical complexity, and the developmental implications of congenital versus acquired conditions. We propose a research agenda, highlighting existing knowledge gaps and targeting areas of improvement in clinical care, research, and policy.

Cognitive reserve protects against apathy in individuals with human immunodeficiency virus.

Apathy is associated with impaired neuropsychological functioning in individuals with HIV. While cognitive reserve (CR) delays neurocognitive decline, CR's relationship with apathy has never been studied. We examined CR's association with apathy in 116 HIV-positive individuals recruited from an urban AIDS center and assessed whether this relationship is moderated by age and/or disease severity. Participants completed the Wechsler Test of Adult Reading and Apathy Evaluation Scale. A CR-composite, combining years of education and word-reading ability, significantly predicted apathy (t = -2.37, p = .02). CR's relationship with apathy was not moderated by age, but participants with nadir CD4 levels ≤ 200 demonstrated a stronger association (t = -3.25, p = .002) than those with nadir CD4 levels > 200 (t = -0.61, p = .55). These findings suggest a protective effect of CR against apathy in HIV-infected individuals across the age span, particularly after a certain threshold of disease severity.

Apathy correlates with cognitive performance, functional disability, and HIV RNA plasma levels in HIV-positive individuals.

We examined the relationship of apathy with neurocognitive performance, age, disease markers, and functional disability in 116 HIV-infected individuals. Apathy was assessed with the Apathy Evaluation Scale and was significantly associated with highest HIV plasma level, functional disability, and neurocognitive performance. Individuals with higher apathy levels demonstrated a stronger association between age and processing speed performance. Our findings suggest that apathy is related to poor neuropsychological functioning, HIV plasma levels, and increased functional disability in individuals with HIV. Additionally, to our knowledge, this is the first study to demonstrate an interactive effect of age and apathy on neuropsychological performance in HIV.

Obstacles faced by general practitioners in Loreto Department, Peru in pursuing residency training.

INTRODUCTION: The Department of Loreto, one of the poorest regions of Peru, has an insufficient number of physicians, particularly specialists, needed to provide adequate health care for its population. The majority of Loreto physicians are GPs who have completed a one-year internship after medical school, followed by a mandatory year of rural service, with no subsequent training. Currently there are no residency training programs available in Loreto. The Loreto Ministry of Health recognizes the value in retaining its own medical school graduates and is, therefore, considering building residency programs in the 4 'basic specialties': internal medicine, pediatrics, general surgery, and obstetrics/gynecology. The objectives of this study were to: (1) characterize the population of currently practicing GPs in Iquitos and Requena in terms of demographics, current medical practice, and educational goals; (2) determine the obstacles faced by general physicians in Loreto, Peru in pursuing residency training; (3) provide baseline information to be used by medical academic institutions to develop specialization programs in Loreto. METHODS: A survey of 55 questions was created in Spanish encompassing demographics, current medical practice, education, training, and professional goals. Of the total 416 GPs in Loreto, 55 were identified in 2 locations: Iquitos and Requena. The goal was to administer the survey to each of these 55 physicians. Consent was given verbally, and 49 surveys were self-administered. Survey responses were translated into English, data were entered in EpiData and analyzed using SPSS software (SPSS Inc; Chicago, IL, USA). RESULTS: A total of 49 surveys were completed by GPs in Iquitos and Requena. Of the respondents, 84% were male, the majority were either married or in common-law relationships, with at least one child. Their average age was 37.6 years. Sixty-five percent were born in Loreto and most currently lived in Iquitos. Almost all respondents reported that they intended to pursue further training, the majority (59%) intending to pursue residency. Of those intending to complete a residency in the future, 40% specified a desired specialty from among the basic four, 22% a more specialized residency, and 37% did not specify any. The location of training sites, cost of moving to and living in Lima, and/or personal or family reasons were each identified by approximately 50% of respondents as obstacles to their pursuit of residency. Less common obstacles were: not passing the entrance exam, lack of job stability, and not knowing English. Fifty percent of the respondents only identified one obstacle, while 35% identified two and 15% identified three. CONCLUSION: Cost and location were the most significant factors preventing physicians from pursuing residency; overall, 83% of the physicians surveyed identified one or both of these as a factor that prevented them from pursuing residency. This suggests that there would be interest among the local physician population in residency programs established in Loreto.

Urban female patients' perceptions of the family medicine clinic as a site for abortion care.

BACKGROUND: Induced abortion is common in the US, yet there is a lack of providers. We surveyed female patients asking why they would or would not (a) accept early abortion offered by their family physician (FP) in their family medicine clinic (FMC) and (b) prefer to access abortion services in the FMC. STUDY DESIGN: An anonymous survey with open- and closed-ended questions was conducted at three FMCs. Results were analyzed using qualitative and quantitative methods. RESULTS: Four hundred forty-nine women completed the survey. Respondents supported offering medication (68.8%) and suction (43.1%) abortion in the FMC. Sixty-seven percent of the respondents who identified themselves as possibly having a future abortion (n=231) would prefer to have the abortion in their FMC. Comfort with either their provider or the FMC was the most frequently cited reason for preferring the FMC. Concern about preserving comfort at the FMC was mentioned by others as a reason for not choosing the FMC. "Expertise" was the most commonly cited reason by those who preferred a specialized abortion clinic. Anonymity or privacy was mentioned by different respondents as a benefit of care at both sites. CONCLUSION: In order to address patient preferences and concerns, early abortion services should be offered in the FMC as well as in specialty clinics.

The impact of mass incarceration on outpatients in the Bronx: a card study.

OBJECTIVE: We examined the impact of arrest and incarceration on primary care patients in the Bronx, New York. METHODS: Patients at three clinics were asked eight questions concerning current and past involvement in criminal proceedings, arrest, and incarceration. RESULTS: One hundred eighteen patients were surveyed. Eleven (9%) patients were currently involved in criminal proceedings. Twenty-one (18%) currently had a family member in jail or prison. Twenty-nine (25%) reported ever being arrested; 65 (55%) reported that they or a family member had been arrested. Twenty-one (18%) had been incarcerated; 60 (51%) reported they or a family member had spent time in jail or prison. For most variables, rates were higher for men and the adults accompanying children at pediatric visits. Clinicians reported positive experiences discussing incarceration. CONCLUSIONS: Involvement with the criminal justice system was common among our patients. Discussion of incarceration did not appear to have a negative impact on the clinical relationship.

A community outbreak of conjunctivitis caused by nontypeable Streptococcus pneumoniae in Minnesota.

BACKGROUND: The Minnesota Department of Health (MDH) was notified of an outbreak of conjunctivitis in city A with cultures positive for Streptococcus pneumoniae. METHODS: MDH staff contacted clinics and schools in city A and city B regarding conjunctivitis cases, reviewed clinical findings of conjunctivitis cases in city A and collected isolates for subtyping. RESULTS: Between September 1 and December 12, 2003, cities A and B reported 735 conjunctivitis cases. Fifty-one percent of the cases were reported from schools, childcare centers and colleges. Adults were more likely to report itching, burning or swelling of the eye(s); children were more likely to report crusty eyes (P < 0.05). Forty-nine percent of conjunctival cultures (71 of 144) were positive for S. pneumoniae. All isolates were nontypeable by serotyping. Pulsed field gel electrophoresis identified 3 clonal groups with 84% of isolates belonging to one clonal group. Multilocus sequence typing revealed that isolates had the same multilocus sequence type as isolates from a 2002 outbreak at a New England college. CONCLUSIONS: This outbreak was widespread in the community and conjunctivitis clinical presentation varied by age. The predominant strains in this outbreak were related to a pneumococcal strain implicated in prior conjunctivitis outbreaks, suggesting these strains have a predilection for causing conjunctivitis.

Adults with invasive pneumococcal disease: missed opportunities for vaccination.

BACKGROUND: The pneumococcal polysaccharide vaccine (PPV) can prevent invasive pneumococcal disease (IPD) in the elderly and those with certain underlying illnesses. However, vaccine uptake remains suboptimal. Identification of missed opportunities for vaccination could guide new strategies for improving uptake. Missed opportunities for vaccination were defined as one or more visits to a hospital, emergency room (ER), or main provider in the 2 years before infection among unvaccinated, adult IPD case-patients with a vaccine indication. METHODS: Adults aged 18 years or older with IPD were identified in six Active Bacterial Core surveillance/Emerging Infections Program Network sites during a 1-year period in 2001 to 2003. Using chart review, patient/proxy interview, a main provider questionnaire, and vaccine questionnaires from additional providers, data were collected on demographics, vaccine indications, vaccine status, and recent healthcare encounters. RESULTS: A total of 1878 cases were enrolled, and 83% had a vaccine indication. Of the 1177 cases with a vaccine indication and sufficient information on recent healthcare encounters, 617 (52%) were unvaccinated. Of these, 566 (92%) had one or more opportunities for vaccination, 54% were hospitalized, 58% had ER visits, and 76% visited their main provider in the 2 years before illness. The number of visits to main providers (median = 6) was higher than hospitalizations (median = 1), and ER visits (median = 1). CONCLUSIONS: One or more missed opportunities for vaccination were documented in nearly all unvaccinated IPD case-patients with a vaccine indication. Most visited their main provider multiple times. Implementation of systematic PPV programs in outpatient settings will likely increase pneumococcal vaccine uptake among high-risk adults.