Parents’ acceptance and regret about end of life care for children who died due to malignancy

PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016–2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child’s life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed. RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons). CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.