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Advance Care Planning for Children with Medical Complexity: Are You Doing It and If So, Are You Doing It Well? :

February 14, 2020

If I asked you to think about advanced care planning (ACP) in your practice, what would come to mind? End-of-life discussions?

If I asked you to think about advanced care planning (ACP) in your practice, what would come to mind? End-of-life discussions?  Incurable cancer? ‘Do not resuscitate’ orders? What about children with medical complexity (CMC)? While scenarios involving patients and care providers facing end-of-life discussions and terminal illness are more common, two-thirds of parents caring for CMC report never hearing of ACP.1 In this month’s Pediatrics, Dr. Julia Orkin and colleagues explore why that may be—and the results are enlightening, if not empowering (10.1542/peds.2019-2241).

Using qualitative content analysis, Orkin et al interviewed parents of CMC and their health care providers (HCP) on three themes relating to discussions on ACP: holistic mindset, discussion content, and communication enhancers (i.e. concepts that would better support conversations related to ACP).  Fourteen mothers and 11 HCPs participated in the interviews and content analysis was performed on the transcriptions of the interviews to achieve thematic saturation. The result is a thorough exploration of concepts that, if further studied and implemented into practice, could improve our abilities to discuss ACP with families and care providers of CMC. 

Some of the findings from the analysis are likely familiar to pediatric providers and include concepts pertaining to the holistic mindset of supporting parents as autonomous decision makers and respecting their expertise regarding their child’s care. What resonated with me the most as a pediatric hospitalist providing care for inpatients were themes arising from analysis of the discussion content. My clinical practice involves our institution’s rendition of family-centered rounds, but the themes from the interviews suggest parents feel I may, at best, underestimate a child’s quality of life and perhaps, at worst, project my implicit biases of what I think quality of life should be for that child. And while I can recall multiple discussions with parents of CMC regarding quality of life, I cannot say with such certainty that I am approaching these conversations in an evidence-based, standardized, or even effective manner. But perhaps there is hope.

Through this work, Orkin and colleagues have established a need to further investigate how we might learn from our experiences with the more familiar conversations on ACP and apply it to the growing population of CMC and their families. The good news? There are areas in which families reported their HCP were doing well in this study. The challenge will be to learn from these areas of success and broaden our own practice involving ACP to extend to the CMC population (or find a provider known and trusted by the family that will). To that extent, Orkin and colleagues provide five recommendations relating to their findings on how a provider might approach a family-centered conversation on ACP (see Table 6 of the original article).  Take a look for yourself in this month’s Pediatrics


Liberman DB, Pham PK, Nager AL. Pediatric Advance Directives: Parents’ Knowledge, Experience, and Preferences. Pediatrics. 2014;134(2)e436-e443. doi:10.1542/peds.2013-3124

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