Methods for collecting data could include: Measures of the safety and quality of retrospective of case notes (e.g. end-of- life care could include: documentation of discussions, the child effectiveness of treatment of symptoms and their parents’ preferences, recognition of the child’s disease anticipatory plan of care and plan of care trajectory in the terminal phase; appropriateness documentation of the child and their and frequency of clinical observations) parents’ wishes, and alignment of these medication chart safety review (e.g. to wishes with actual care determine whether inappropriate real-time feedback on child and medications were stopped, and palliative family experiences of care medications were prescribed and feedback on experiences from administered appropriately) families of children who received follow-up with families, clinicians and care other staff involved in the child’s whether any existing advance care plan care was enacted use of tools developed for specific settings the category of (e.g. the Family Satisfaction in Intensive (expected/unexpected/ diagnosis) Care Survey) the time lapse between deciding to multidisciplinary mortality palliate or referring to specialist and morbidity review. palliative care, and death The health service organisation should transfers of care in the last week of life implement processes to routinely review (e.g. transfers to or from intensive the safety and quality of all deaths and care). determine if end-of-life care could have been improved.
Measures of the safety and quality of end-of- life care could include: effectiveness of treatment of symptoms recognition of the child’s disease trajectory documentation of the child and their parents’ wishes, and alignment of these wishes with actual care real-time feedback on child and family experiences of care feedback on experiences from families of children who received care whether any existing advance care plan was enacted the category of (expected/unexpected/ diagnosis) the time lapse between deciding to palliate or referring to specialist palliative care, and death transfers of care in the last week of life (e.g. transfers to or from intensive care). Methods for collecting data could include: retrospective of case notes (e.g. documentation of discussions, the child and their parents’ preferences, anticipatory plan of care and plan of care in the terminal phase; appropriateness and frequency of clinical observations) medication chart safety review (e.g. to determine whether inappropriate medications were stopped, and palliative medications were prescribed and administered appropriately) follow-up with families, clinicians and other staff involved in the child’s care use of tools developed for specific settings (e.g. the Family Satisfaction in Intensive Care Survey) multidisciplinary mortality and morbidity review. The health service organisation should implement processes to routinely review the safety and quality of all deaths and determine if end-of-life care could have been improved.
Consensus-statement-essential-elements-for-safe-and-high-quality-paediatric-end-of-life-care-Dec-2016.docx