End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
Emergency Service; Hispanic Americans; Hospice Care/ut [Utilization]; Hospices/ut [Utilization]; Hospitalization; Palliative Care/ut [Utilization]; Terminal Care/mt [Methods]; Adolescent; California; Cardiovascular Diseases/mo [Mortality]; Child; Congenital Abnormalities/mo [Mortality]; Delivery of Health Care; Female; Health Services Accessibility; Hospital/ut [Utilization]; Humans; Infant; Male; Medicaid; Neoplasms/mo [Mortality]; Policy; Preschool; United States; Young Adult
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. RESULTS: Pediatric hospice accessibility (p < .05), palliative care policy (p < .01), congenital anomalies (p < .01), and cardiovascular conditions (p < .01) were related to hospice enrollment. Usual source of care (p < .001), functional status (p < .001), palliative care policy (p < .01), and private insurance (p < .01) were associated with emergency room utilization, while usual source of care (p < .001), cancer (p < .001), and disability status (p < .01) corresponded with hospital admissions. CONCLUSION: Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children.
Lindley LC; Trujillo LV
Hispanic Health Care International
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/1540415316670900" target="_blank" rel="noreferrer noopener">10.1177/1540415316670900</a>
Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records
Child; Female; Humans; Male; Advance Directives; Physician-Patient Relations; Pediatrics; Practice Guidelines as Topic; Communication; Resuscitation Orders; Time Factors; quality of life; end of life; adolescent; Preschool; decision making; infant; retrospective studies; DNAR; Parents; documentation; Parents/px [Psychology]; Terminal Care; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; review; Medical Records; Neoplasms; advance planning; child and family wishes; Neoplasms/mo [Mortality]; Patient Care Planning/st [Standards]; Terminal Care/px [Psychology]
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.
2014-03
Beringer AJ; Heckford EJ
Child: Care, Health And Development
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/10.1111/cch.12020" target="_blank" rel="noreferrer">10.1111/cch.12020</a>
Characteristics of patients who refuse do-not-resuscitate orders upon admission to an acute palliative care unit in a comprehensive cancer center.
Female; Humans; Male; Palliative Care; Adult; Middle Aged; Patient Acceptance of Health Care; Survival Analysis; Case-Control Studies; African Americans; retrospective studies; DNAR; Cancer Care Facilities; Neoplasms/di [Diagnosis]; Neoplasms/mo [Mortality]; Resuscitation Orders; Nausea/co [Complications]; Pain/co [Complications]
BACKGROUND: Refusal of appropriately indicated do-not-resuscitate (DNR) orders may cause harm and distress for patients, families, and the medical team. We conducted a retrospective study to determine the frequency and predictors of refusals of DNR in advanced cancer patients admitted to an acute palliative care unit., METHODS: A total of 2538 consecutive admissions were reviewed. Demographic and clinical characteristics from 200 consecutive patients with DNR orders and 100 consecutive patients who refused DNR were collected, and differences between the groups were determined by multivariate regression and recursive partitioning analysis., RESULTS: Of 2538 admissions, 2530 (99%) were appropriate for DNR discussion. Of the 2530 admissions, 2374 were unique patients, and 100 (4%) of 2374 refused DNR. Refusers had median (interquartile range, IQR) pain of 7 (4-9) versus 5 (3-8, P = .0005), nausea of 2 (0-7) versus 1 (0-4, P = .05), and dyspnea of 1 (0-5) versus 4 (0-7, P = .002) as compared with DNR nonrefusers, respectively. Patients with hematological malignancies and advance directives had a lower DNR refusal risk (odds ratio [OR], 0.38; P = .02, and OR, 0.36; P < .0001, respectively). Multivariate regression analysis revealed that patients with moderate-severe pain (OR, 3.19; P = .002) and with no advance directives (OR, 2.94; P < or = .001) had higher DNR refusal risk. There were more inpatient deaths among DNR nonrefusers (87 of 200 vs 1 of 100, P < .0001). Median (IQR) time from discharge to death was 18 (8-35) days for those with DNR orders and 85 (25-206) days for DNR refusers (P < or = .0001)., CONCLUSIONS: DNR refusal in patients admitted to the acute palliative care unit is low, more frequent in patients with more pain and nausea and no advance directives, and associated with longer survival. This study demonstrates possible predictors of complicated DNR discussions.
2010
Parsons HA; de la Cruz MJ; Zhukovsky DS; Hui D; Delgado-Guay MO; Akitoye AE; El Osta B; Palmer JL; Palla SL; Bruera E
Cancer
2010
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/10.1002/cncr.25045" target="_blank" rel="noreferrer">10.1002/cncr.25045</a>
Metronomic therapy can increase quality of life during paediatric palliative cancer care, but careful patient selection is essential
Neoplasms/dt [drug Therapy]; Palliative Care; Patient Selection; Quality Of Life; Administration; Child; Female; Humans; Karnofsky Performance Status; Male; Metronomic; Neoplasms/mo [mortality]; Prospective Studies
AIM: Children with refractory or high-risk malignancies frequently suffer from poor quality of life during palliative care. This study explored the effect of metronomic drug administration on survival and quality of life in paediatric patients with various refractory or high-risk tumours. METHODS: We treated 17 patients with a maintenance therapy that consisted of metronomic thalidomide, etoposide and celecoxib. The endpoints of the study were overall and progression-free survival, changes in the Karnofsky-Lansky scores from baseline to the end of the study therapy and radiological responses. RESULTS: The median overall survival after the start of the study therapy was 6.2 months (range 2.0-57.7), and the six-, 12- and 24-month survival rates were 59%, 18% and 18%, respectively. The median progression-free survival was 3.2 months (range 0.3-17.8). The Karnofsky-Lansky scores increased significantly during the study therapy (p = 0.02), with 35% of the patients having a transient improvement in their clinical status. Radiologically, one partial response and two disease stabilisations were encountered. Grade III-V adverse events occurred in 76% of the patients. CONCLUSION: Metronomic therapy may increase the quality of life during palliative care for childhood cancer, but requires careful patient selection to minimise the risk of serious adverse events. Copyright _2016 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Porkholm M; Toiviainen-Salo S; Seuri R; Lonnqvist T; Vepsalainen K; Saarinen-Pihkala UM; Pentikainen V; Kivivuori SM
Acta Paediatrica
2016
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.13338" target="_blank" rel="noreferrer">10.1111/apa.13338</a>