Where Infants Die: Examination of Place of Death and Hospice/Home Health Care Options in the State of Wisconsin

Leuthner, Steven R.; Boldt, Ann Morstad; Kirby, Russell S.

doi:10.1089/109662104773709396

Cited by 39 publications

(37 citation statements)

References 17 publications

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“…69,70 Because the ED remains part of the safety net of care for many children who are dying at home or who face a known life span-limiting condition, it is therefore sometimes the unanticipated venue for end-of-life care for such children. …”

Section: Collaboration With Pediatric Palliative Care Servicesmentioning

confidence: 99%

Death of a Child in the Emergency Department

O’Malley¹,

Shook²,

Ackerman³

et al. 2014

Pediatrics

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The death of a child in the emergency department (ED) is one of the most challenging problems facing ED clinicians. This revised technical report and accompanying policy statement reaffirm principles of patient- and family-centered care. Recent literature is examined regarding family presence, termination of resuscitation, bereavement responsibilities of ED clinicians, support of child fatality review efforts, and other issues inherent in caring for the patient, family, and staff when a child dies in the ED. Appendices are provided that offer an approach to bereavement activities in the ED, carrying out forensic responsibilities while providing compassionate care, communicating the news of the death of a child in the acute setting, providing a closing ritual at the time of terminating resuscitation efforts, and managing the child with a terminal condition who presents near death in the ED.

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Section: Collaboration With Pediatric Palliative Care Servicesmentioning

confidence: 99%

Death of a Child in the Emergency Department

O’Malley¹,

Shook²,

Ackerman³

et al. 2014

Pediatrics

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“…5 PPC can be delivered in various settings, including community, hospitals, hospice, and at home. [6][7][8][9][10][11][12][13][14] In the United Kingdom, where the modern pediatric hospicepalliative care movement began with the founding of Helen House in 1982, 15 the freestanding hospice approach has been commonly employed. Other countries, including the United States, typically emphasize hospital inpatient consultation and home-hospice care.…”

mentioning

confidence: 99%

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: Palliative care is an increasingly important element of pediatric care for children with noncurable, terminal conditions. Freestanding hospices represent one model of care provision; however, little research on this approach has been conducted. WHAT THIS STUDY ADDS:This report documents the experience of North America' s first freestanding hospice over 15 years to better understand the characteristics of children and families enrolled and to establish baseline information for future studies and program planning. abstract OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children' s Hospice (CPCH) is North America' s first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS:A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS:The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%).CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric lifethreatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served. Pediatrics 2014;134:e765-e772 Dr Siden conceptualized and designed the study, guided the analysis, and reviewed and revised the manuscript; Ms Chavoshi drafted the initial manuscript, carried out the analysis, and finalized the manuscript; Ms Harvey was responsible for data review and entry and database management; Ms Parker reentered data and reviewed data for accuracy; Ms Miller reviewed and revised the manuscript and provided content pertaining to program description and budget; and all authors approved the final manuscript as submitted.www.pediatrics.org/cgi

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“…1 Infants with CCCs were five times more likely to die in an inpatient setting than those aged 1-17 years old (see Table 4), since hospitals are better equipped to handle such cases in intensive care units than are hospice facilities or home PP/HC services. 11,16,17,26,27 While children with CCCs were more likely overall to die on an inpatient ward than not, those aged 1-17 years old had a higher likelihood of dying at home or in an ED than did infants (see Table 4). Nationally, the odds of CCC deaths occurring at home increased significantly across all pediatric age groups every year from 1989 to 2003, 2 so our findings reflect this trend.…”

Section: Secondary Causes Of Deathmentioning

confidence: 99%

“…13 Information regarding site of death for the pediatric population has grown since 2000. 2,[14][15][16][17][18] A study from Washington state found that children who died with an underlying CCC from 1980 through 1998 were mostly in an inpatient setting, but that around 41% of those > 1 year old died at home. 18 Moreover, nonwhite, poorer children were more likely to die in a hospital than at home.…”

Section: Introductionmentioning

confidence: 99%