Palliative care for children with cancer--home, hospital, or hospice?

Goldman, Ann; Beardsmore, Sharon; Hunt, Jane

doi:10.1136/adc.65.6.641

Cited by 103 publications

(47 citation statements)

References 9 publications

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“…Although there is debate regarding the optimal location of care, there is a paucity of research describing PPC program characteristics to better inform that debate. 7,8,13,17,18 Referrals to palliative care teams are increasing over time for all diagnostic categories. 19 Although the freestanding approach is gaining importance, little research on this model has been conducted to inform how delivery of care is to be proposed, improved, and/or expanded.…”

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confidence: 99%

“…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.…”

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confidence: 99%

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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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confidence: 99%

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confidence: 99%

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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“…This should be discussed with the families, describing changes in the level of consciousness and breathing pattern (Cheyne-Stoke breathing), which indicate that the end of the child's life is approaching. Such a discussion allays some fears and instils confidence into the family that they can cope with caring at home [3] .…”

Section: Informationmentioning

confidence: 99%

“…As providers of specialist PC, it is important to consider the type and amount of support that professionals require to give for day-to-day care [3] . Some individuals and teams providing care locally may have much experience of caring for dying children and their families, but for others the experience may be very new.…”

Section: Availability and Type Of Servicesmentioning

confidence: 99%

Managing Palliative Care at Home

Hannan

2007

Med Princ Pract

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This paper outlines the principles of palliative care (PC) provision for sick children at home, in the UK. The differences between home and hospital with regard to the illness and availability and type of services and equipment are discussed. The need to plan for the availability of appropriate professional staff, equipment, medication, information and the procedure when the child dies is discussed. Successful PC at home is possible for most children, if plans are made for all potential eventualities. These principles of PC may be helpful in delivering PC at home in other countries.

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“…There are disadvantages to caring for a dying child at home, and the most often cited concern is the heavy responsibility assumed by the parents and primary care team, who may not feel they have the capability to care for both the dying child and the rest of the family. 51 Some other problems encountered in caring for their dying child at home include watching the decline, fears of what would happen, the nursing responsibility, and care for the other siblings. 49 Choice and control are fundamental to parents' coping strategies, and home is generally seen as the place of choice for terminal care of the child.…”

Section: Carementioning

confidence: 99%

Pediatric Palliative Care

Johnston

Hentz

Friedman

2005

The Journal of Pediatric Pharmacology and Therapeutics

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Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palliative care, but continued research into this important area of pediatrics will lead to improvements in the care of children with life-threatening illnesses.

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Palliative care for children with cancer--home, hospital, or hospice?

Cited by 103 publications

References 9 publications

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

Managing Palliative Care at Home

Pediatric Palliative Care

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