End Of Life Care For Children Research Articles

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data.

This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.

Current status of intensive end-of-life care in children with hematologic malignancy: a population-based study

BackgroundAdult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding the quality of end-of-life care (EOLC) for children with hematologic malignancies. To improve the quality of EOLC for children with hematologic malignancies, the aims of this study were (i) to compare intensive EOLC between children with hematologic malignancies and those with solid tumors; and (ii) to describe factors associated with intensive EOLC in children with hematologic malignancies.MethodsWe retrospectively reviewed 0- to 18-year-old patients with cancer, who died in hospital between April 2012 and March 2016 in Japan using the Diagnosis Procedure Combination per-diem payment system. Indicators of intensive inpatient EOLC were defined as intensive care unit admission, cardiopulmonary resuscitation (CPR), intubation and/or mechanical ventilation, hemodialysis, or extra-corporeal membrane oxygenation in the last 30 days of life, or intravenous chemotherapy in the last 14 days. We determined factors associated with intensive EOLC using regression models. Data regarding use of blood transfusion were also obtained from the database.ResultsAmong 1199 patients, 433 (36%) had hematological malignancies. Children with hematologic malignancies were significantly more likely than those with solid tumors to have intubation and/or mechanical ventilation (37.9% vs. 23.5%), intensive care unit admission (21.9% vs. 7.2%), CPR (14.5% vs. 7.7%), hemodialysis (13.2% vs. 3.1%) or extra-corporeal membrane oxygenation (2.5% vs. 0.4%) in their last 30 days, or intravenous chemotherapy (47.8% vs. 18.4%; all P < .01) within their last 14 days of life. Over 90% of children with hematological malignancies received a blood transfusion within the last 7 days of life. For hematological malignancies, age under 5 years was associated with CPR and ≥ 2 intensive EOLC indicators. Longer hospital stays had decreased odds of ≥ 2 intensive EOLC indicators.ConclusionChildren with hematologic malignancies are more likely to receive intensive EOLC compared to those with solid tumors. A younger age and shorter hospital stay might be associated with intensive EOLC in children with hematologic malignancies.

Physician and Parent Perceptions of End-of-Life Experience in Children with Advanced Heart Disease

Purpose To describe and identify associations between parent and physician perceptions regarding end-of-life (EOL) care and suffering in children with advanced heart disease (AHD). Methods and Materials The Survey about Caring for Children with Heart Disease at EOL was developed and mailed to parents of children with AHD who experienced in-hospital deaths between 2007-2009. Patients’ cardiologists were also surveyed. Spearman correlation coefficients and Fisher’s exact tests were performed. Results There were 31 parent/physician survey pairs. Patient age at death was a median of 6.5 mo (4 d–20yrs); 84% had congenital heart disease. At EOL, 90% of patients were intubated and 30% were on mechanical circulatory support. Length of last hospital stay was 26 d (1-193 d). Cardiologists expected long-term survival at diagnosis in 36% of patients. Nearly 50% of parents and physicians felt that the child had suffered ‘a great deal,’ ‘a lot,’ or ‘somewhat’ at EOL with no association in perceptions between them. While half of parents felt they “sometimes” received conflicting information from different members of the care team, only 25% of physicians felt that parents perceived care team conflict. In 12 of 28 cases, physicians reported that the parents were prepared for the way the child died while the parents reported feeling unprepared. The majority of parents (93%) felt that quality of care during the last month of the child’s life was ‘excellent’ or ‘very good’ compared to only 78% of physicians. Conclusions Both parents and physicians perceive suffering at EOL in children who die of AHD. Although parents feel quality of care is excellent, physicians overestimate the degree of parent preparedness for their child’s death. There is no association between parent and physician perceptions of the EOL experience. Prospective studies are necessary to improve EOL care for children with AHD.

Opioid Tapering in Children: A Critical Review of the Literature

I. Background. The end-of-life (EOL) experience of children undergoing SCT, intensive therapy delivered with curative intent has not been described. II. Research Objectives. To evaluate patterns of parent and physician perspectives on EOL care for children after SCT. III. Methods. Retrospective cross-sectional survey of 141 parents of children who died of cancer, and primarily received care at one of two tertiary care pediatric institutions (response rate 64%). Children for whom SCT was the last cancer therapy (n 1⁄4 31) were compared with those for whom it was not (nonSCT, n 1⁄4 110). IV. Results. The SCT group included 22/31 (71%) allogeneic and 9/31 (29%) autologous SCT. Median (IQR) interval between last cancer treatment and death was 65 (30e127) days (SCT group) and 25 (8e59) days (non-SCT) (P 7 days before death, intubation was less likely (P 1⁄4 .05) and resuscitation discussion and LOD planning more likely (both P 1⁄4 .02). V. Conclusion. SCT is associated with significant suffering and less opportunity to prepare for EOL. VI. Implications for Research, Policy, or Practice. Palliative care and SCT may be complementary in providing care focused simultaneously on cure and relief of suffering.

End-of-Life Experience of Children Undergoing Stem Cell Transplantation: Parent and Provider Perspectives and Patterns of Care.

Abstract 805 Background:As an intense therapy delivered with curative intent, with substantial risk for life-threatening toxicity, stem cell transplant (SCT) may uniquely impact the end-of-life (EOL) experience of children who undergo SCT but do not survive. Despite this, very little is known about the EOL experience of such children. Objective:To evaluate patterns of and parent and physician perspectives on EOL care for children after SCT. Methods:We evaluated parent and physician perspectives and patterns of EOL care via a retrospective, cross-sectional survey of 141 parents of children who died of cancer, and primarily received care at one of two tertiary care pediatric institutions (response rate 64%). Chart review provided additional information. Children for whom SCT was the last cancer therapy (n=31) were compared with those for whom it was not (non-SCT, n=110). Results:The SCT group included 22/31 (71%) allogeneic and 9/31 (29%) autologous SCT. The median (IQR) interval between last cancer treatment and death was 65 (30-127) days (SCT group) and 25 (8-59) days (non-SCT group) (p<0.001). SCT parents and physicians realized there was no realistic chance for cure later than their non-SCT peers (Table 1) and were more likely to have a primary goal of cure/life extension (Table 2). SCT children were more likely to die from toxicity (RR 14.2, CI 6.4-31.6, p<0.001) and be intubated at EOL (RR=6.7, CI 3.71-12.1, p<0.001), with less opportunity to plan location of death (LOD) (RR=0.24, CI 0.12-0.48, p<0.001). Their resuscitation discussions occurred later (4.5 (1-8.5) days before death versus 17 (6-38) days, p<0.001) and resulted in fewer DNR orders (16/31 (52%) of SCT children with a DNR order versus 81/110 (74%) of non-SCT children, p=0.028). SCT children were more likely to suffer highly from their last cancer therapy (RR=2.7, CI 1.3-5.8, p=0.019), and they experienced more physical symptoms (mean 3.5 (2.0) symptoms versus 2.4 (1.9), p=0.009) and psychological symptoms (mean 2.2 (1.0) symptoms versus 1.5 (1.2), p=0.005). The 13 SCT children whose parent and physician recognized there was no realistic chance for cure ≥7 days before death were more likely to have location of death planned (RR=2.9, CI 1.3-6.1, p=0.02), and resuscitation discussed (RR=2.2, CI 1.4-3.4, p=0.02), and had a lower likelihood of being intubated at EOL (RR=0.39, CI 0.17-0.93, p=0.05). If the parent's primary goal was to reduce suffering, their goal was more likely to be achieved if they, along with the physician, recognized no realistic chance for cure at least 7 days before death (RR=4.8, CI 1.3-18.6, p=0.03).Table 1Parent and Physician Understanding of Prognosis: Duration of Recognition of No Realistic Chance for Cure*SCTNon-SCTP†Parents4 (1-822)83.5 (29-237)<0.001Physicians15.5 (2-30)84 (29-166)<0.001*Reported as median (inter-quartile range) number of days before death.†P values correspond to logistic regression models adjusting for time since death.Table 2Proportions of Parents and Physicians Reporting a Primary Goal of Cure/Life Extension A. Parents B. PhysiciansSCTNon-SCTP*Last cancer therapy20/26 (77)39/87 (45)0.004During end of life period12/31 (39)18/109 (17)0.012At time of death9/29 (31)5/103 (5)<0.001SCTNon-SCTP*In last month of life23/29 (79)31/103 (30)<0.001At time of death5/28 (18)5/106 (5)0.02*P values correspond to logistic regression models adjusting for time since death. Conclusions:SCT is associated with significant suffering and less opportunity to recognize and prepare for EOL. Given the high morbidity and mortality associated with SCT and the shorter timeframes, children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals and opportunities to maximize quality of life. Disclosures:No relevant conflicts of interest to declare.

Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities.

To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting. A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institute's Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children. Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed. These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient. Similarly, these principles of effective communication, ethical decision-making, and attention to the quality of life of patients, families, and providers apply to the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curriculum, but rather taking better advantage of the many teachable moments provided by caring for a dying patient.