Home-based palliative care for children with incurable cancer: long-term perspectives of and impact on general practitioners

Abstract

Context: although 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.

Objectives: to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting.

Methods: in 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).

Results: a 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 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.

Conclusion: in 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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