Trends in Pediatric Palliative Care 2018; Issue #4

By Dr. Hal Siden

Feature Article: Ciriello, A. G., Dizon, Z. B., & October, T. W. (n.d.). Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians. American Journal of Hospice & Palliative Medicine.

Other Feature Articles Referenced: Hill, D., Faerber, J., Carroll, K., Miller, V., Morrison, W., Hinds, P., & Feudtner, C. (2018). Changes Over Time in Good-Parent Beliefs Among Parents of Children with Serious Illness: TwoYear Cohort Study (TH320B). Journal of Pain and Symptom Management, 55(2), 570.

Hill, D. L., Nathanson, P. G., Fenderson, R. M., Carroll, K. W., & Feudtner, C. (2017). Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study. Journal of Pain Symptom Management, 53(5), 911–918.

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Thirty-two articles made it through the filter this month, and several caught my eye. At least 3 of the articles emphasize communication. Communication is a key skill of palliative care. One of my colleagues has often joked that to be a good palliative care doc (clinician) all you need to do is prescribe morphine and know how to talk to people.

The first article to catch my attention was “Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians” .This article, and its predecessor “Parent Satisfaction with Communication Is Associated with Physician’s Patient-Centered Communication Patterns During Family Conferences” point out how hard this is to do. We all began communicating in our first days of life; like breathing, we think we do it well. Critical care physicians don’t try to be less–than-expert communicators, and in fact, they value the skill. It’s just hard to teach people how to do it differently. Too bad this second article was in AJHPM and not in a critical care journal (I am guessing that the authors tried), as there is the problem of preaching to the converted.

Communication in critical care is a good area for educators to build simulation sets around and begin training at the residency and fellow level.

In this month’s citation list, we also find two citations from the same study, published in JPSM as both an abstract and a full paper; “Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study” and, “Changes Over Time in Good-Parent Beliefs Among Parents of Children with Serious Illness: Two Year Cohort Study”.In 2017 these authors published the results of a two-year cohort study examining parents’ identification of problems and hopes, and their concordance on these constructs and they do /do not change over time. In their 2018 abstract, reported from the annual meeting of Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, the same research informed the analysis of how the “good parent” perspective changed over time. I have found the “good parent” concept, first elucidated by Hinds, to be helpful in my clinical work. Hinds and colleagues extend this work with the cohort study.

The results of this abstract, to my reading, are that over time parents shift into a group with the priority of having their child feel loved, emphasizing the quality of life and comfort (24% of the sample). At two years, another 9% have shifted into this group. The authors state that “most parents have stable, good parent beliefs over time”; I agree with “most,” but 33%, not a trivial number, shift their priorities over a two year period. Both the article and abstract needed close reading and a pencil to follow some of the numbers. That effort is worthwhile – the concepts are tricky ones, and yet I think are crucial to helping us understand the family experience. While the first citation dealt with how we are good/ not so good at communicating, the second and third citations give us some insight into who we are communicating with.