Characteristics influencing location of death for children with life-limiting illness

Chang, Emily; MacLeod, Rod; Drake, Ross

doi:10.1136/archdischild-2012-301893

Cited by 36 publications

(38 citation statements)

References 17 publications

(20 reference statements)

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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

Geest

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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“…12,13 Of hospital deaths, the majority occur in intensive care settings. 14,15 Consequently, a sound understanding of the principles and practices of palliative and EOL care should be maintained by all clinicians in the field.…”

Section: Introductionmentioning

confidence: 99%

End-of-Life and Bereavement Care in Pediatric Intensive Care Units

Suttle

Jenkins

Tamburro

2017

Pediatric Clinics of North America

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Most childhood deaths in the United States occur in hospitals and the majority of these in intensive care settings. Pediatric intensive care unit (PICU) clinicians must anticipate, identify and effectively treat the dying child’s pain and suffering, as well as support the psychosocial and spiritual needs of the child and their family. Such timely therapy and support may facilitate comfort and a peaceful death, and also help family members adjust to their loss. Effective communication that is candid and compassionate is paramount to successful end of life (EOL) care, as is creating an environment that encourages parent participation in their child’s care and fosters meaningful family interactions. Despite these supportive efforts, parents whose children die often experience reduced mental and physical health during bereavement. Finally, many ethical issues surround EOL care in the PICU, and as such, several professional societies have published recommendations and policies addressing these issues. PICU clinicians should stay current on these recommendations and policies and maintain a working understanding of their implications.

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“…Our sample's mean proportion of hospital death (87.40%) is at the highest end of worldwide statistics. In other countries, the percentages of hospital death for pediatric cancer patients not specifically under palliative care were 31.0%e60.2% in Germany, 3,11,25e27 33.9% e56.3% in the U.S., 6,10,15,16,28,29 37.2% in New Zealand, 5 39.0% in Australia, 4 43.3%e47.0% in England and Wales, 8,14 61.0% in Sweden, 2 and 71.4% in Japan. 9 Furthermore, place of death for Taiwanese pediatric cancer patients slightly shifted from home death to hospital death, reaching significance in 2009.…”

Section: Discussionmentioning

confidence: 99%

“…For children, dying in a preferred place reduces current and future separation anxieties, enhances quality of life, and facilitates parent bereavement closure. 1,2 However, children with cancer around the world, except in Germany, 3 Australia, 4 and New Zealand, 5 continue to die predominantly in acute care settings 2,6e9 rather than at home or in hospice, in contrast to their own or parents' preference. 4,10e12 To better organize EOL care and ultimately to develop policies that facilitate dying in a preferred place, the logical first step is to identify factors predisposing pediatric cancer patients to die in an acute care hospital.…”

Section: Introductionmentioning

confidence: 99%

Determinants of Hospital Death for Taiwanese Pediatric Cancer Decedents, 2001–2010

Hung

Liu

Tang

2015

Journal of Pain and Symptom Management

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Taiwanese pediatric cancer patients predominantly died in an acute care hospital with a slightly increasing trend of shifting place of death from home to hospital. Propensity for hospital death was determined by residential urbanization level, diagnosis, primary physician's specialty, and the primary hospital's characteristics and health care resources. Clinical interventions and health policies should ensure that resources are allocated to allow pediatric cancer patients to die in the place they and their parents prefer to achieve a good death and promote their parents' bereavement adjustment.

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Characteristics influencing location of death for children with life-limiting illness

Abstract: Most children in New Zealand with a life-limiting illness die in hospital with a significant influence resulting from ethnic background, diagnosis and referral to the PPC service. These findings have implications for resourcing PPC services and end-of-life care.

Cited by 36 publications

References 17 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

End-of-Life and Bereavement Care in Pediatric Intensive Care Units

Determinants of Hospital Death for Taiwanese Pediatric Cancer Decedents, 2001–2010

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