Shifting Place of Death Among Children With Complex Chronic Conditions in the United States, 1989-2003

Feudtner, Chris; Feinstein, James A.; Satchell, Marlon; Zhao, Huaqing; Kang, Tammy I.

doi:10.1001/jama.297.24.2725

Cited by 215 publications

(189 citation statements)

References 34 publications

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“…Although the death of the child generally had a strong impact on the GP, the majority of GPs eventually came to terms with the child's death. Obtaining the perspective of GPs with respect to providing home-based palliative care to children with incurable cancer is highly relevant, as the majority of children with incurable cancer die at home [2][3][4] . Because the role of the GP in providing home-based care differs among countries, translating our findings into clinical practice will depend on the country of interest.…”

Section: Impact Of Providing Paediatric Palliative Care On the Gpsmentioning

confidence: 99%

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Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

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Bindels

Pluijm

et al. 2017

Journal of Pain and Symptom Management

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ContextAlthough a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. ObjectivesTo explore the perspectives of GPs who care for children with advanced-stage cancer in a homebased setting. MethodsIn this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). ResultsA total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients.The median interval between the child's death and completing the questionnaire was 7 years.The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%).Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's M A N U S C R I P T A C C E P T E D ACCEPTED MANUSCRIPT3 death, and they rated their own distress level as relatively high during the terminal phase (median score: 6, range: 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. ConclusionIn general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among healthcare professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.

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Section: Impact Of Providing Paediatric Palliative Care On the Gpsmentioning

confidence: 99%

“…Compared to children with non-malignant diseases, children with cancer are more likely to die at home [2][3][4] .…”

Section: Introductionmentioning

confidence: 99%

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Geest

Bindels

Pluijm

et al. 2017

Journal of Pain and Symptom Management

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“…Two related definitions of medically complex children were used to define our cohorts in parallel analyses. The first consisted of children with diagnoses in more than 1 chroniccondition category, [30][31][32] defined by organ system, without requiring the presence of any single specific condition. The second consisted of children with a single specific diagnosis, CP or bronchopulmonary dysplasia (BPD), and the presence of a diagnosis in 1 of the chronic-condition categories.…”

mentioning

confidence: 99%

Increasing Prevalence of Medically Complex Children in US Hospitals

et al. 2010

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OBJECTIVE: In this study we used national data to determine changes in the prevalence of hospital admissions for medically complex children over a 15-year period. PATIENTS AND METHODS: Data from the Nationwide Inpatient Sample, a component of the Healthcare Cost and Utilization Project, was analyzed in 3-year increments from 1991 to 2005 to determine national trends in rates of hospitalization of children aged 8 days to 4 years with chronic conditions. Discharge diagnoses from the Nationwide Inpatient Sample were grouped into 9 categories of complex chronic conditions (CCCs). Hospitalization rates for each of the 9 CCC categories were studied both individually and in combination. Trends of children hospitalized with 2 specific disorders, cerebral palsy (CP) and bronchopulmonary dysplasia, with additional diagnoses in more than 1 CCC category were also examined. RESULTS: Hospitalization rates of children with diagnoses in more than 1 CCC category increased from 83.7 per 100 000 (1991–1993) to 166 per 100 000 (2003–2005) (P[r] < .001). The hospitalization rate of children with CP plus more than 1 CCC diagnosis increased from 7.1 to 10.4 per 100 000 (P = .002), whereas the hospitalization rates of children with bronchopulmonary dysplasia plus more than 1 CCC diagnosis increased from 9.8 to 23.9 per 100 000 (P < .001). CONCLUSIONS: Consistent increases in hospitalization rates were noted among children with diagnoses in multiple CCC categories, whereas hospitalization rates of children with CP alone have remained stable. The relative medical complexity of hospitalized pediatric patients has increased over the past 15 years.

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“…The increased proportion of deaths in critical care settings over time is in line with research indicating that most children die in hospitals, most often in critical care settings. 16,17 The change may reflect better integration of pediatric palliative care programs in these settings along with a change in culture, where palliative care is appropriately offered alongside continued attempts at life-sustaining therapies. However, referrals need to be made early enough for the team to have an impact on care.…”

Section: Discussionmentioning

confidence: 99%

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

et al. 2016

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Shifting Place of Death Among Children With Complex Chronic Conditions in the United States, 1989-2003

Cited by 215 publications

References 34 publications

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Increasing Prevalence of Medically Complex Children in US Hospitals

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

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