Blog PedPalASCNET

This blog features expert commentaries on recent publications of interest in pediatric palliative care research. Our bloggers provide their personal take on an article chosen from our monthly citation list and discuss how it relates to trends within the field. To view our search strategy, click here.

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Trends in Pediatric Palliative Care 2017; Issue #1

February 8, 2017

Dr. Hal Siden

Feature Article: Bateman, L. B., et al. (2016). “Physician communication in pediatric end-of-life care: A simulation study.” American Journal of Hospice & Palliative Medicine 33 (10): 935-941.

This month’s list has a wealth of interesting articles. The Bateman article caught my attention because it addressed head on the need for structured training in [physician] communication with parents at high intensity moments. The article brings together two emerging trends – increasing attention or pediatric palliative care, and the use of simulation for clinician education.

Only a few studies have looked directly at the process of physician-parent communication at end-of-life, and the authors cite the excellent article by deVos (Pediatrics 2015). Betty Davies and Rose Steele have published new data on provider-parent communication (Qualitative Health Research 2016), but not at end-of-life. Ken Pituch and colleagues at the University of Michigan have used actors and video as a training tool, but have not published data on their approach.

The Bateman study shows the potential of simulation for identifying poor practice (which they do), and suggests the opportunity for training and modeling in better approaches.
One niggling item. In a study with only 13 subjects, there is no need to use percentages (e.g., 23% when they meant 2 participants). This may have been an editor’s decision and not the authors’.

Other interesting articles this month:

Coombes, L. H., et al. (2016). “Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.” Palliative Medicine 30(10): 935-949.

  • QOL measures are key to outcome determination, and more work needs to be done in this area.

Funamura, J. L., et al. (2016). “Characterizing mortality in pediatric tracheostomy patients.” The Laryngoscope, doi:10.1002/lary.26361

  • We have many tracheostomy patients- understanding their survival curves is important for our counseling of families.

Lotz, J. D., et al. (2016). “”Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning.” Palliative Medicine. doi:10.1177/0269216316679913

  • Some reasons why parents don’t eagerly come to those Family-Team meetings we value so much.

Osenga, K., et al. (2016). “A Comparison of Circumstances at the End of Life in a Hospital Setting for Children With Palliative Care Involvement Versus Those Without.” Journal of Pain & Symptom Management 52(5): 673-680.

  • Like the Coombes article, we need to show how processes and outcomes differ because of PPC involvement – it is not black and white, or obvious to others in the absence of evidence.

Vollenbroich, R., et al. (2016). “Listening to parents: The role of symptom perception in pediatric palliative home care.” Palliative & supportive care 14(1): 13-19.

  • Symptom assessment is a critical skill – we need to be experts at interpreting our own observations and families’ as well.