Clinical dilemmas in children with life-limiting illnesses: decision making and the law

Abstract

Decision making about interventions for children and young people with life-limiting illnesses is fraught with difficulties but faced regularly by staff in children's hospices and paediatric wards. The perspectives of the child, various family members and professionals may all be different. The process of discussion and negotiation and the mechanism by which a decision is arrived at is complex. Various laws have recently changed in the UK that have an impact on this process. This article discusses several clinical scenarios to better understand these decisions and the effects of changes in the law. It also discusses how multidisciplinary teams in children's hospices (and other supportive clinical systems) can best support young people and families with and without recourse to the law.

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

“…[2236384447495355678186929596109] There were six original articles[6973768790114] and two review articles[3088] among the eight articles on education, and two original articles,[56] and six review articles[24284361104105] among seven articles on research, respectively. Of the 27 articles on administration, there were 15 original articles[212358717278798294101102111115116] and 12 review articles.…”

“…There were 46 studies that used qualitative methods[212333373940424546485658–606364–66686971–73767879828388949799–103106107110111113–116] and 17 studies that used quantitative methods[202935525770747577808485879098108112] among the 63 original articles. Among the 34 review articles, 33 articles were narrative reviews[222425–2830–323436384143444749–5153–5561626781868991–939596104109] and 1 was a systematic review. [105]…”

Sharing the care: the key-working experiences of professionals and the parents of life-limited children

“…However, the current study argues that relaying information, having many professional contacts, and having to carve out their own packages of care can be very stressful for families. Wright et al (2009) stated that it should not be taken for granted that the perceptions of families mirror those of professionals. They recognised that some parents will always want to be active decision makers whereas others will want to defer decisions or ask professionals to make choices for them.…”

Ethical problems in pediatrics: what does the setting of care and education show us?

“…For this area, some of the important subjects in the teaching of Ethics in pediatrics should be emphasized such as the limits of prematurity, advanced life support in children with very limiting disabilities and severe malformations, do-not-resuscitate orders, therapeutic futility and palliative care, technology-dependent children and the use of off-label medications. Previous studies addressing these issues, which were developed in different settings, highlight the difficulties encountered by professionals working in hospitals, especially those in pediatric subspecialties who are entrusted with the care of critically ill children and adolescents [26-33]. They reinforce the need for physicians to have skills to cope with these situations so that their decision-making can achieve the patient's best interests.…”