Dr. Hal Siden
Feature Article: Ullrich, CK, Lehmann, L, London W, et al. (2016) End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant. Biology of Blood and Marrow Transplantation.
This interesting article examines end-of-life care provided to a very specific but important population, children who have undergone stem-cell transplant (SCT). The report comes from Boston Children’s Hospital and has a large enough population (147 subjects) to make the results generalizable to other similar programs. This group, with senior author Joanne Wolfe, has published a number of important analyses
There have been previous studies of hospitalized children but not of those who underwent SCT. The authors undertook an observational case-control approach to 110 children who did not receive PPC and 37 who did receive PPC. It is notable that only 25% of the children received PPC at an institution with a well-established, highly reputable palliative care team with at least two members who are also Oncologists. The authors do note that the rate of referral rose over the 6 years of the study sample.
On a positive note, 27% of consults by the PPC team occurred before transplant Day 0. PPC did not adversely affect survival; something that should be well-communicated to our colleagues. On a less positive note, Advance Directive (resuscitation) discussions occurred in 88% of PPC cases and 58% of non-PPC. Ideally, 100% of PPC consultations have Advance Directive discussion; this may seem challenging, but it is an important objective of pediatric palliative care, especially for the very ill patient, and as clinicians we need to work harder to develop ways to engage in that discussion.
It is less than ideal, but harder to criticize, the fact that PPC group Advance Directive discussions occurred 7 days prior to death and in the non-PPC group 2 days prior. There are many barriers to early engagement with PPC. As the authors point out, SCT is a cure-focused treatment, and it remarkable that the median duration of engagement with a PPC team was 21 days, which still may have been too short a time. Children engaged > 1 month with PPC had more hospice involvement and home deaths, suggesting that PPC influences care if given enough time.