Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children.

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.

Dissonance in views between parents and clinicians of children with serious illness: How can we bridge the gap?

Parents of children with serious illness must find a tolerable way of living each day, while caring for their child and making decisions about their treatments. Sometimes clinicians worry that parents do not understand the seriousness of their child's illness, including possible death. This can lead to tension, disagreement and even conflict. Such situations continue to occur despite expanding literature to help clinicians understand drivers of parental behaviour and decision-making. Some of this literature relates to the role of hope and how parents characterise being a 'good parent'. This article will summarise some of the applications and limitations of the hope and 'good parent' literature, as well as frameworks to understand grief and loss. We propose, however, that there is at least one missing link in understanding potential dissonance in views between parents and clinicians. We will make a case for the importance of a richer understanding about if, and how, parents 'visit' the 'reality' that clinicians wish to convey about their child's diagnosis and prognosis. We propose that clinician understanding about the benefits and burdens of 'visiting' this 'reality' for an individual family may help guide conversations and rapport, which in turn may influence decision-making with benefits for the child, family and clinicians.

Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme.

AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of simulation-based education for this topic. METHODS: An electronic learning-needs survey was distributed to medical, nursing and allied health clinicians from departments who provide primary care for children with life-limiting conditions. Results were incorporated into the design of a simulation-based education session which was piloted with the Royal Children's Hospital Oncology Department. RESULTS: A total of 157 learning-needs surveys were included in analysis, and included quantitative and qualitative responses from nursing, allied health, senior and junior medical staff from intensive care, general and subspecialty medical teams. Most (75.0%) participants had participated in ACP discussions previously. Only 40.1% of participants felt confident to assess appropriate timing of, and 45.2% felt adequately prepared to participate in ACP discussions. Barriers identified were both clinician and patient/parent related, including clinicians not knowing when to address issues (43.9%) or what to say (21.0%). Participants indicated that ACP discussions are most frequently initiated when death is clearly imminent. Following a pilot of simulation-based education with the oncology department, 90% of participants expressed confidence to participate in ACP discussions. CONCLUSIONS: Barriers to paediatric ACP, including lack of clinician training, continue to contribute to delayed conversations. Simulation-based education is a valuable and feasible educational tool that can increase clinicians' understanding and confidence in this area.

The dying child: how is care different?

Of children needing palliative care, less than half have a malignancy. Most families will elect to care for their child at home if this is offered as a realistic option. The often protracted and unpredictable nature of the many illness trajectories encountered in paediatric palliative care requires an approach that integrates palliative care with curative care. Children bring added dimensions to the physical, psychosocial and ethical aspects of palliative care. Health professionals from both paediatric and palliative care sectors have skills and knowledge to bring to palliative care of the child.