The Case for Advance Care Planning in the NICU
Case Planning; NICU; Decissional-Support; Advanced Care Planning; ACP; Newborn Period
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
Lin M; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Pediatrics
2022
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/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057824</a>
The Surprise Question as a Trigger for Primary Palliative Care Interventions for Children with Advanced Heart Disease
Pediatric palliative care; Advanced care planning; Advanced heart disease; Pediatric cardiology; Prognostication; Surprise question
There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this child died within the next year?"-to predict one-year mortality in children with AHD and assess its utility as entry criteria for future trials. This is a prospective cohort study of physicians and nurses caring for children (1 month-19 years) with AHD hospitalized ≥ 7 days. AHD was defined as single ventricle physiology, pulmonary vein stenosis or pulmonary hypertension, or any cardiac diagnosis with signs of advanced disease. Primary physicians were asked the surprise question and medical record review was performed. Forty-nine physicians responded to the surprise question for 152 patients. Physicians responded "No, I would not be surprised if this patient died" for 54 (36%) patients, 20 (37%) of whom died within 1 year, predicting one-year mortality with 77% sensitivity, 73% specificity, 37% positive predictive value, and 94% negative predictive value. Patients who received a "No" response had an increased 1-year risk of death (hazard ratio 7.25, p < 0.001). Physician years of experience, subspecialty, and self-rated competency were not associated with the accuracy of the surprise question. The surprise question offers promise as a bedside screening tool to identify children with AHD at high risk for mortality and help physicians identify patients who may benefit from palliative care and advance care planning discussions.
Alizadeh F; Morell E; Hummel K; Wu Y; Wypij D; Matthew D; Esteso P; Moynihan K; Blume ED
Pediatric Cardiology
2022
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/10.1007/s00246-022-02919-8" target="_blank" rel="noreferrer noopener">10.1007/s00246-022-02919-8</a>
Treatment limitation and advance planning: Hospital-wide audit of paediatric death
advanced care planning; Child; documentation; end-of-life care; Hospitalization; Pediatric Hospitals; paediatrics; Palliative Care; Retrospective Studies; Terminal Care; treatment limitation
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 2016, and results were compared to 2007 data from our centre. χ(2) tests were used for comparisons. RESULTS: A total of 101 deaths occurred in the inpatient setting in 2015-2016. Most deaths followed WWMT (88/101, 87%) and occurred in children with pre-existing chronic conditions (85/101, 85%). There was a shift to earlier discussions with parents regarding WWMT compared to 10 years prior. Cases where discussions began prior to the last admission increased from 4 to 19% (P = 0.004). There was increased paediatric palliative care (PPC) involvement (10 vs. 37%, P < 0.001), and a slightly greater proportion of children died outside of intensive care (16 vs. 22%, P = 0.25). In 2015-2016, subgroup analysis showed that children who died as inpatients but outside of intensive care were 76% more likely to have PPC involved than those who died in intensive care (P < 0.001). Their families were 51% more likely to have discussed WWMT with medical staff before the last admission (P < 0.001). CONCLUSIONS: The last decade has seen an increase in PPC involvement and advance discussions around WWMT at our centre. Both of these are associated with death outside of intensive care.
Audigé M; Gillam L; Stark Z
Journal of Paediatrics and Child Health
2020
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/jpc.14771" target="_blank" rel="noreferrer noopener">10.1111/jpc.14771</a>
Advanced care planning five years on: an observational study of multi-centred service development for children with life-limiting conditions
child and family wishes; advanced care planning; paediatric palliative care; end of life care
BACKGROUND: Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed five years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards. THE PURPOSE: to compare how planning has developed over the five years across a range of children's health care services in a single UK city. METHOD: Manual retrospective review of health care records, using focused data collection. INCLUSION CRITERIA: children who died before the age of 18 years, as a consequence of a LLLT condition, over an 18 month period and had lived locally to a regional children's hospital. RESULTS: The first review (R1) included 48 patients with 114 health care records: median age at death 0 years (range 0 to 18 years). The follow-up review (R2) included 47 patients, with 80 health care records: median age at death 2 years (range 0 to 17 years). The proportion of records containing evidence of a prognostic discussion had risen from 73% (R1) to 91% (R2), p<0.005. The proportion of health care records with ACP was consistent between R1 and R2 (75% and 72% respectively). An ACP tool was found to be in regular use in R2 compared to no examples in R1. The acute hospital trust plans were more detailed in R2 than R1. The proportion of cases where preferred location of death matched actual location was stable, around half. CONCLUSIONS: EOLC conversations increased over the five years studied. In the acute hospital trust, there is evidence of better quality ACP although quantity is stable: enabled by the implementation of an ACP tool and education programme. Challenges remain in engaging children and young people in advanced planning.
Martin A E; Beringer A J
Child: Care, Health and Development
2019
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/cch.12643" target="_blank" rel="noreferrer noopener"> 10.1111/cch.12643</a>
The Impact of Pediatric Palliative Care Involvement in the Care of Critically Ill Patients without Complex Chronic Conditions
end-of-life care; pediatric palliative care; advanced care planning
BACKGROUND: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. OBJECTIVE: To determine the incidence and impact of PPC for previously healthy patients who died in a pediatric hospital. DESIGN: Retrospective chart review of all pediatric deaths over four years. SETTING/SUBJECTS: Patients were 0 to 25 years old, died during an inpatient stay at an academic pediatric hospital >/=48 hours after admission, and had no complex chronic conditions (CCCs) before admission. MEASUREMENTS: One hundred sixty-seven patients met the eligibility criteria. Most died in intensive care settings (n = 149, 89%), and few (n = 34, 20%) received PPC consultations or services. RESULTS: Patients who received PPC services were more likely to receive a multidisciplinary care conference than did patients without PPC support (70.5% vs. 39.9%; p = 0.001), which also occurred earlier for patients who received PPC services (seven days vs. two days before death; p = 0.04). Most patients had documented end-of-life planning in their medical records; however, this occurred earlier for patients who received PPC consultation (9.5 days before death) than for those who did not (two days before death; p < 0.0001). Patients receiving PPC support (67.7%) were also more likely to have a do-not-resuscitate/intubate order before death than those who did not (39.9%; p = 0.004). CONCLUSIONS: Pediatric patients without known CCCs who subsequently die as inpatients benefit from PPC in terms of goals of care discussions and documentation of end-of-life care preferences.
Spraker-Perlman HL; Tam RP; Bardsley T; Wilkes J; Farley L; Moore D; Sheetz J; Baker JN
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2018.0469" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0469</a>