One of the most powerful tools I have in medicine, especially in complex care, is patient or family developed goals of care. This is a tool used frequently in palliative care but often specifically for end of life conversations. This descriptive study of 47 Dutch parents with children living at home with palliative care services found that discussing aims with families during the whole palliative care process, not just for end of life discussions, helped families prioritize and care for their child at home. As these goals often change over time and as the disease progresses families often felt under supported and having an open discussion during visits may be a way to get families to discuss their plan and hopefully reduce parental stress.

Kristie Malik, MD

Verberne LM et al. Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study. Eur J Pediatr 2017 Mar; 176:343-354. PMID: 28078429