Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study

Abstract

Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.

Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study

“…Children with LLNDDS are generally cared for at home, though at times they may need hospital and hospice-based care. Complex medical regimes, dependence on technology and the alternation of medical crises and periods of relative stability necessitate that these children and their families have ongoing contact and interaction with many different healthcare agencies and services [3][4][5]. The complexity of providing this means that there may be tensions in the goals of care between disparate service providers, particularly in relation to cure-oriented interventions and palliative care [6], whilst service provision may face many unique challenges given this group are at the intersection of disability and palliative care contexts.…”

Paediatric palliative care and intellectual disability—A unique context

“…Liberman, Song, Radbill, Pham, & Derrington's () pilot study observed that families of children with complex medical conditions were receptive to the introduction of early palliative care in primary care settings, and that with education and information provision, primary care providers felt increasingly comfortable introducing palliative care to families. Of the 17 families who participated, 11/17 had never previously heard of palliative care, and 13/17 were unaware that a palliative care team was available.…”

“…Conditions seen in paediatric palliative care are much more heterogeneous than in adult palliative care (Lenton, Stallard, Lewis, & Mastroyannopoulou, 2001). In this context, it is more difficult to replicate studies, although attempts to delineate important components of paediatric palliative care consultations earlier in the disease trajectory have been made using a Delphi methodology (Bradford et al, 2014).…”

The intensive care medicine clinical research agenda in paediatrics

“…Preliminary work in palliative care and advanced care planning show promise in clarifying care goals and providing psychological as well as medical support beyond the PICU [69]. The potential value of PICU "follow-up" clinics where consultation with other subspecialists and primary care providers can be coordinated in both time and place is beginning to be considered [70].…”