Advances and Challenges in European Paediatric Palliative Care

Abstract

Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.

The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

“…Revision categories identified as pediatric LLC or LTIs 4,29 with the direct input of a pediatric palliative care clinician, as well as data from referrals to the largest UK-based tertiary palliative care team over the preceding 2 years. The search terminology was further confirmed by comparing the search findings to diseases cited in epidemiological research on the leading causes of death among children in the United States and United Kingdom who have LLCs and LTIs.…”

“…LTIs are illnesses "for which curative treatment may be feasible but can fail." 3,4 Both LLCs and LTIs can cause "progressive deterioration rendering the child increasingly dependent on parents and carers." 3,4 Because of medical advances in care and treatment of children diagnosed with LLCs and LTIs, they now live longer but often with greater medical complexity and increased care needs.…”

“…3,4 Both LLCs and LTIs can cause "progressive deterioration rendering the child increasingly dependent on parents and carers." 3,4 Because of medical advances in care and treatment of children diagnosed with LLCs and LTIs, they now live longer but often with greater medical complexity and increased care needs. 5,6 At the same time as treatment and management of these children has become more complex and involved, provision has also moved away from hospitals and other institutional locations, into the home.…”

Initiating technology dependence to sustain a child’s life: a systematic review of reasons

“…Advocating for child 23 ; Best interests of child 15 ; Care burden 54 ; Care pathway 50 ; Clinical need 11 39 ; Decision-making 8 14 31 34 ; Difficulty of prognosis 55 ; End-of-life care 30 48 ; Evaluation 16 56 ; Evidence for prognosis 18 ; Flexibility 24 ; Guidelines 17 ; Intensive treatment 48 ; Judgement 24 ; Prognosis 23 45 46 56 ; Prognostication 22 ; Time pressure to act 15 ; Treatment 8 28 29 32-34 48 ; Treatment decision 8 26 32 ; Uncertainty 35 Longitudinal responsibility 26 ; Outcomes 30 31 42 45 ; Social value 7 ; Socioeconomic differences 48 ; Survival 54 ; Well-being 28 Beneficence 55 ; Capacity and resources 18 50 ; Communication 24 45 46 Extended essay identified. Many of the moral or dutiful reasons for initiation were in fact negative in tone, for example describing the decision to initiate technology dependence because of fear of legal consequences or pressure from another party.…”

Assessing the Quality of Deliberative Stakeholder Consultations with Pediatric Palliative Care Clinicians and Oncologists in Canada

“…The dearth of empirical evidence supporting patient-clinician communication and shared decision-making is generally identi ed (3) as a barrier to improved pediatric palliative care delivery. (4) We conducted deliberative stakeholder consultations with healthcare professionals across two large, pediatric academic medical centers in Canada to ll this aforementioned knowledge gap. Deliberative democratic methods rest on the idea that stakeholder communities, both lay and expert, are holders of experiential knowledge, and this knowledge is necessary for shared decision-making where new policies are in development (5,6).…”