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Parent and clinician preferences for location of end‐of‐life care: Home, hospital or freestanding hospice?
Author(s) -
Kassam Alisha,
Skiadaresis Julia,
Alexander Sarah,
Wolfe Joanne
Publication year - 2014
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.24872
Subject(s) - medicine , palliative care , end of life care , blood cancer , family medicine , hospice care , place of death , ranking (information retrieval) , good death , pediatric oncology , cancer , emergency medicine , nursing , machine learning , computer science
Background Current 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. Procedure We 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. Results Majority 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). Conclusions Parents 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. © 2013 Wiley Periodicals, Inc.