Parent and Clinician Preferences for Location of End-of-Life Care: Home, Hospital or Freestanding Hospice?

BackgroundCurrent options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death. ProcedureWe administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH. ResultsMajority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P<0.01) and lower ranking to FSPH (P<0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P<0.01) and less likely for children with haematologic malignancies (P=0.03). ConclusionsParents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care. Pediatr Blood Cancer 2014;61:859-864. (c) 2013 Wiley Periodicals, Inc.