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

Abstract

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.

An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer

“…Of these physical symptoms, fatigue was the most difficult to treat and if/when treated, interventions are likely to be unsuccessful. These findings have been well documented (Lopes et al, 2016;van der Geest et al, 2017). In fact, fatigue is often associated with pain and dyspnea though causal inferences cannot be made; the biological mechanisms of fatigue, pain, and dyspnea may be comparable and likely occur in parallel with disease progression (Okuyama et al, 2008).…”

“…Symptom distress is associated with poor HRQoL in children with advanced cancer (Snaman et al, 2018). Poor perception of children's HRQoL and suboptimal symptom management at EOL is associated with parental grief, depression (McCarthy et al, 2010;Meert et al, 2011;van der Geest et al, 2014;van der Geest et al, 2017), and parental distress after children's death (Rosenberg et al, 2013). Targeted and effective symptom management underscores the complexity of symptom burden and concerted efforts to improve pediatric palliative care.…”

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

“…24 In another study, general practitioners (GPs) providing home-based palliative care reported receiving insufficient information from the hospital about symptoms and difficulties during the palliative phase. 72 Similarly, after a review of patient cases, Houlahan and colleagues 43 identified barriers including a lack of available physicians as reported by nurses, difficulty in obtaining orders for medication and delays in obtaining medication from pharmacy. Disagreement and conflict about treatment decisions and goals were identified as other symptom management barriers.…”

Palliative care in children with cancer: implications for general practice

“…However, the emotional impact of a child dying of cancer is enormous both for the GP and the family. 19 Although it happens rarely during a GP's career, it is a memorable event. 19 Continuity of care and facilitated collaboration between hospital and primary care, and between primary healthcare professionals, are essential.…”

“…19 Although it happens rarely during a GP's career, it is a memorable event. 19 Continuity of care and facilitated collaboration between hospital and primary care, and between primary healthcare professionals, are essential. A consultation-based contact with a specialised palliative care team to support the GP can be helpful.…”