Low prevalence of palliative care and ethics consultations for children with chronic critical illness
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from pre-mature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child’s life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care. Paediatric intensive care units (ICUs) across the United States (U.S.) report increasing numbers of children with prolonged and recurrent hospitalisations and medical complexity(1). We have suggested that this population be considered ‘chronically critically ill (CCI)’ (2).The CCI designation for adult ICU patients signals to families and clinicians alike that thepatient’s prognosis is poorer than predicted by their primary diagnosis alone. Nelson et al. (3) have argued that palliative care can enhance care planning, communication and quality of life for patients with CCI. The ethical challenges that can arise for these patients, for example, conflicting values and treatment burdens, also highlight an obvious role for ethics consultation.
Xu L; Gao H; Zeng J; Liu J; Lu C; Guan X; Qian S; Xie Z
BMC Infectious Diseases
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">10.1111/apa.14394</a>
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
prognosis; Infant; Intensive Care Units; Medical Futility; Neonatal; Newborn; Parents; Prognosis; ethics; moral distress; prematurity; gray zone; Nicu; parent experiences; poor prognosis
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Arnolds M; Xu L; Hughes P; McCoy J; Meadow W
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2017.12.050</a>