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.

Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.

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.

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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.

Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child' s life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child' s medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: how well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family' s social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child' s outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children. 1 A recent study showed that ∼2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions. 2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure. 3 Clinicians striving to individualize decisions about LTV generally have a limited window into the social context that shapes what it will be like for this child to go home with this family. Similarly, families faced with decisions about LTV for their children may not know how to think through the implications for changes to life at home.Evidence for how to consistently, meaningfully, and fairly incorporate family social contexts into decisions about LTV has not kept pace with the availability of pediatric home medical equipment. The essential question is can this family provide the necessary home care if LTV is initiated for the child? And, if not, what would the alternatives look like, and are they acceptable to the family? These decisions require frank consideration of the child' s and the family' s potential experience of the treatment alternatives: complex home care, indefinite inpatient care, medical foster care, or limiting life-sustaining therapies. Reviewing potential home care demands and alternative placements during decisions about initiating LTV may not be helpful for every family, but consistently offering tangible discussions of child and family quality of life with LTV legitimizes and exp...

Rationale Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision‐making needs of parents who made different choices for their children could inform clinician counseling that better supports parents’ diverse values and goals. Objectives To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention. Methods We conducted semi‐structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent–clinician communication during decision‐making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results. Results Thirty‐eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high‐quality decision‐making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision. Conclusions High‐quality decision‐making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.

Objectives To explore the family experience of home ventilation through a comparison of anticipated home life changes with subsequent experiences. Study Design Guided interviews with parents across three states who chose home ventilation for their child within the last 5 years. Patient‐Subject Selection Purposive sampling of parents who chose home ventilation for their child within the last 5 years. Methods Interviews were transcribed for qualitative analysis and analyzed for thematic saturation and prevalence of codes. Results Twenty families were interviewed. Families generally reported not considering potential home life changes when facing the decision about home ventilation; instead, they worried most about medical management. These concerns reversed in importance later. Families learned medical management quickly but felt largely unprepared for the extensive changes to their home life, including isolation, altered relationships with extended family and community, effects on siblings, financial strain, and need for physical changes to their house. Families had not anticipated how much they would be affected by home healthcare as a new part of their life. Conclusions The priorities that families consider during decisions about pediatric home ventilation may not be aligned with the actual home experience of this technology. Given that the success of home ventilation largely rests with the family's care, family expectations for home life adaptations must be augmented, as should postdischarge supports for families with complex home care experiences.