Trends in Pediatric Palliative Care 2017; Issue #8

Dr. Bill Splinter.

Featured articles: Quinn C, McCarthy S, Devins M, O’Reilly M, Twomey M, Ling J. Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study. International Journal of Palliative Nursing. 2017;23(2):88–97. DOI: 10.12968/ijpn.2017.23.2.88

Bender HU, Riester MB, Borasio GD, Fuhrer M. “Let’s bring her home first.” Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care. J Pain Symptom Manage. 2017;7(17):30212–9. DOI: 10.1016/j.jpainsymman.2017.04.006

Again, we have another month of many very interesting papers in the August list of citations. Two of the papers will be discussed in more detail, and they are markedly different.

The initial article by Quinn et al reports the results of their Delphi Study of the research priorities in children’s palliative care in Ireland. The study is limited by their focus on a single nation, but much of their results can be readily adapted to other countries. Anyone contemplating research and/or a quality improvement initiative within the highly specialized field of pediatric palliative care would be well advised to review this article in detail.

Quinn identified 8 research priorities and these include good clinical governance, national pediatric palliative care strategy, training programmes, children’s rights, linkages between maternity services and children’s palliative care, needs of the family caregivers, database, care planning and bereavement. All of these priorities were considered ‘extremely important’ or ‘very important.’ Quinn provided an excellent review of a Delphi study and they also discussed the five themes identified by their process.

The second article by Bender et al reviews the Munich experience of caring for 212 consecutive pediatric palliative care patients from 2009-2015. Of their study population, only 55% had died, and among that 55%, 84% died at home, 12% at the hospital and 4% at the hospice. These are very interesting numbers and atypical when compared to Canadian norms. In our setting, with a hospice adjacent to the hospital, almost all of our families opt for hospice care at the end of life. Our hospice functions quite independently from the hospital but there is marked synergies, such as we can readily transfer patients to and from the hospital and hospice. Also, most families develop very close ties with hospice staff before the end of life course, thus feel very comfortable having end-of-life care at the hospice as opposed to their home or the hospital.

In addition to the characteristics of patients receiving care under the specialized pediatric palliative home care (SPPHC) framework, it would have been nice if the investigators reported all of the local paediatric deaths (i.e. are all deaths referred to SPPHC or just some, and if so, what are the descriptors for the patients who are not cared for by the SPPHC?). That said, they do report national numbers as comparators. The age 0-1 yr are quite dissimilar (i.e. SPPHC population is markedly different than the national numbers). Bender et al report that those in their 1 to 20-year-old age group are similar (i.e. SPPHC numbers are similar to national values, with respect to their diagnoses). But upon my review of their Table 2, I certainly do not get the same impression; for example the national average is 30% of the children that die, it is due to a neoplasm while their local, SPPHC population has a 51% incidence of neoplasm.

Overall this is a very interesting article and it is very helpful to see what is the typical practice in Munich, Germany. This facilitates comparison between countries and localities. Of particular note, is their request for using common approaches to patient categories/classifications. They do recommend the use of ICD-10 as the classification of choice for children within the paediatric palliative care population. I would tend to concur with their recommendations.