TY - JOUR
T1 - Home-Based Palliative Care for Children With Incurable Cancer
T2 - Long-term Perspectives of and Impact on General Practitioners
AU - van der Geest, Ivana M.M.
AU - Bindels, Patrick J.E.
AU - Pluijm, Saskia M.F.
AU - Michiels, Erna M.C.
AU - van der Heide, Agnes
AU - Pieters, Rob
AU - Darlington, Anne Sophie E.
AU - van den Heuvel-Eibrink, Marry M.
N1 - Publisher Copyright:
© 2017 American Academy of Hospice and Palliative Medicine
PY - 2017/3/1
Y1 - 2017/3/1
N2 - 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 The objective of this study was 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 seven 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 health care 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.
AB - 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 The objective of this study was 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 seven 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 health care 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.
KW - Cancer
KW - children
KW - general practice
KW - palliative care
UR - http://www.scopus.com/inward/record.url?scp=85011587146&partnerID=8YFLogxK
U2 - 10.1016/j.jpainsymman.2016.09.012
DO - 10.1016/j.jpainsymman.2016.09.012
M3 - Article
C2 - 28042078
AN - SCOPUS:85011587146
SN - 0885-3924
VL - 53
SP - 578
EP - 587
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
IS - 3
ER -