Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Journal of Pediatric Intensive Care
2023
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/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>
Palliative Care Needs Assessment for Pediatric Complex Care Providers
Children with Medical Complexity; Pediatric complex care; Pediatric Palliative Care (PPC)
Context Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines. Objectives The purpose of this article is to investigate challenges that complex care programs face in caring for children with medical complexity (CMC), as well as to explore whether identified challenges could be met through collaboration with pediatric palliative care or additional training for complex care teams. Methods Medical providers who self-identified as providing clinical care to children with medical complexity were asked to complete an online anonymous survey. Subjects were recruited through a Complex Care listerv. Data were analyzed using descriptive statistics. Results 85 subjects completed the survey, of whom 87.1% (n=74) were physicians, and 12.0% (n=11) were nurse practitioners. Subjects reported several challenges in caring for CMC, including symptom management, establishing goals of care, advance care planning, and coordination of care. A majority of subjects reported benefitting from palliative care consultative assistance in each subject area. Most subjects described their relationship with palliative care as a close partnership with frequent overlap. Conclusions The evolving field of pediatric complex care is associated with an array of challenges in caring for CMC. Many of these challenges include competency areas where palliative care providers receive concerted training. Our research suggests greater palliative care involvement in the CMC population can benefit complex care teams and patients, given the expertise palliative providers can bring to the population and the discipline of complex care.
DiDomizio PG; Millar Morgan M; Olson L; Murphy N; Moore D
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.11.005</a>
An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers
Consultation; Extracorporeal membrane oxygenation; Pediatric palliative care; Survey
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Method(s): Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Result(s): Of 291 eligible respondents, 48% (n=140) completed the survey and 16% (n=47) answered an open-ended question. Benefits included support in decision-making (n=98; 70%) and identification of goals of care (n=89; 64%). Barriers included perception of giving up on families (n=59; 42%) and poor acceptability by other team members (n=58; 41%). Respondents endorsed communication with the primary ICU team before (n=122; 87%) and after (n=129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusion(s): Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.
Delgado-Corcoran C; Wawrzynski SE; Mansfield KJ; Flaherty B; DeCourcey DD; Moore D; Cook LJ; Ullrich CK; Olson LM
Journal of Palliative Medicine
2022
<a href="http://doi.org/10.1089/jpm.2021.0452" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0452</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>
Pediatric Palliative Care Consultation
Barriers to referral; Elements of consultation; Referral criteria; Value added benefits
Pediatric palliative care (PPC) is a relatively new and quickly growing pediatric subspecialty. It is generally provided using a consultative model, and is available in most specialized pediatric hospitals. This article discusses PPC consultation with specific focus on the added value of PPC, elements of a PPC consultation, and challenges to and opportunities for PPC consultation. Ongoing research, current publication, expert opinion, and institutional experience were compiled for this article.
2014-08
Moore D; Sheetz J
Pediatric Clinics Of North America
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.04.007" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.007</a>
The prevalence of and survival in Mucopolysaccharidosis I: Hurler, Hurler-Scheie and Scheie syndromes in the UK
Child; Humans; Adult; Prevalence; Kaplan-Meier Estimate; Phenotype; Demography; Registries; Medical; adolescent; Societies; England/epidemiology; Mucopolysaccharidosis I/epidemiology/mortality/physiopathology; Wales/epidemiology
BACKGROUND: Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disease subdivided into three phenotypes of increasing severity: Scheie, Hurler-Scheie and Hurler. To gauge the effectiveness of treatments and to determine the load likely to fall on health-care systems, it is necessary to understand the prevalence and natural progression of the disease especially with regard to life-expectancy. In general such data on the natural history of lysosomal storage diseases is sparse. METHODS: Analysis of prevalence and patient survival in MPS I disease using a unique longitudinal data set initiated and maintained over a period of more than 20 years by the Society for Mucopolysaccharide Diseases (UK). RESULTS: The birth prevalence of MPS I in England and Wales over the period 1981 to 2003 was 1.07/100,000 births and within +/- 5% of estimates reported in several studies that examined reasonably large populations. The median survival for MPS I patients (including all phenotypes irrespective of various treatments) was found by Kaplan-Meier analysis to be 11.6 years. This result was driven by the relatively poor survival of patients with the Hurler phenotype who, irrespective of any treatments received, had a median survival of 8.7 years; when censoring for receipt of bone marrow transplant (BMT) was implemented median survival of Hurler patients was diminished to 6.8 years. The difference between these survival curves was statistically significant by log rank test and can be attributed to beneficial effects of BMT and or selection of patients with superior prognosis for intervention with BMT. Survival curves for Hurler patients who received and did not receive BMT were very different. Probability of survival at 2 year after BMT was ~68% and was similar to this after 5 years (66%) and ten years (64%); the mean age of Hurler patients at receipt of BMT was 1.33 years (range 0.1 to 3 years). Follow up was insufficient to determine median survival of the milder phenotypes however, unsurprisingly, this was clearly superior to that for Hurler patients. CONCLUSION: The birth prevalence of MPS I in England and Wales is 1.07/100,000 and the median survival for MPS I patients is 11.6 years.
2008
Moore D; Connock MJ; Wraith E; Lavery C
Orphanet Journal Of Rare Diseases
2008
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).
Journal Article
<a href="http://doi.org/10.1186/1750-1172-3-24" target="_blank" rel="noreferrer">10.1186/1750-1172-3-24</a>