Writing a good anticipatory care plan for a child with severe disability

There are increasing numbers of children with severe disability and life limiting conditions living longer in the community. In order for them to have high quality end of life care and choice of place of death there need to be discussions with the child and family about how the child may deteriorate and the pros and cons of the different possible interventions taking into account the priorities and views of the family and the child themselves. Families and professionals are reluctant to talk about the death of a child and there is always uncertainty. Parallel planning for best and worst case scenarios can be helpful and offering families a useful medical emergency care plan for their child is a positive way to start to plan for deterioration and life threatening events. The emergency care plan can include the resuscitation plan and the child and family priorities of care and leads on to further discussions about choices in end of life care including place of death and funeral plans.     

Evaluation of a pediatric palliative care educational workshop for oncology fellows

BACKGROUND: Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows. PROCEDURE: Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. RESULTS: Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. CONCLUSIONS: Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.     

Utilization of palliative care consultations in pediatric oncology phase I clinical trials

Pediatric phase I clinical oncology trials represent a unique cohort of patients who have not responded to standard therapies and remain highly vulnerable to treatment toxicity and/or disease burden. Incorporating a palliative care consultation into the care plan for those with relapsed/refractory cancer where chance of cure is limited is generally recommended. A retrospective chart review of pediatric phase I trials revealed that palliative care was consulted in <20% of patients, most often for symptom management. Efforts to increase the use of palliative services in this population may enhance quality of life for children and families enrolled in phase I studies.     

Influence of early phase clinical trial enrollment on patterns of end‐of‐life care for children with advanced cancer

We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010–2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end‐of‐life care (EOLC) differed between patients enrolled in early phase clinical trials (EP) and those not enrolled (NEP). Baseline characteristics and healthcare utilization did not significantly differ between groups. EP patients received PPC consultation closer to death than NEP patients (median days before death = 58 [interquartile range = 16–84] vs. 85 [32–173]; P = 0.04). Our findings suggest that early phase trial enrollment does not substantially alter EOLC for children with advanced cancer but may contribute to later PPC engagement. Future studies should definitively assess the relationship between trial enrollment and PPC timing.