Dr. Hal Siden, Medical Director, Canuck Place Children’s Hospice; Division Head, Palliative Medicine, BC Children’s Hospital; Editor, Trends in Pediatric Palliative Care
Morrison, R. Sean, Diane E. Meier, and Robert M. Arnold. “What’s Wrong With Advance Care Planning?” JAMA 326, no. 16 (October 26, 2021): 1575. https://doi.org/10.1001/jama.2021.16430
This is a somewhat unusual Commentary for TPPCR. First, we have so many great contributors I don’t usually do the Commentary any longer. Second, the featured article is by Sean Morrison, Diane Meir, and Robert Arnold who are not pediatric providers. In fact, the article did not appear in our search this month because it was not specific to Pediatrics (our search strategy focuses on infants, children and adolescents). The 3 authors are major figures in Palliative Care, and have done groundbreaking work in advocacy, program development and research.
The title is intriguing and grabbed my attention: “What’s Wrong with Advance Care Planning?” As a clinician, educator, and program leader nothing is wrong with ACP! I have spent years promoting it, and next week will be an instructor in a small-group session. So, what could be wrong with it?
Well, if you believe Morrision, Meier, and Arnold, a lot could be. Their brief but important commentary points to 7 peer-reviewed articles that includes a systematic review, a scoping review, and 5 research studies that all show ACP does not achieve its desired outcomes. The authors list 8 reasons why ACP does not work, and each of them makes sense.
In Pediatrics some of us have strongly embraced ACP. There are projects using an adaptation of Ariadne Lab’s Serious Illness Conversation Guide (cf. the above references for Camara van Breemen and the TPPCR review by Julia St. Louis in 2021) or developing a new guide (cf. Danielle DeCourcey). These publications describe the development and use of ACP guides in children’s health care. They are not studies of outcomes of that ACP.
Could ACP have a different outcome for children than adults? Possibly. In the cited 2016 paper Negar Chavoshi and I described how ongoing ACP discussion had an impact on outcomes with fewer requests by families for resuscitation at the time of death regardless of charted Advance Directive. Those conversations were not one-time guided ACP sessions, but were semi-structured conversations occurring over time.
Despite Morrison and colleagues’ scepticism about outcomes I think ACP is still more important than AD. Three citations (Sudore x 2 and Connolly) define ACP appropriately as ongoing conversations about values and wishes.
(I also refer people interested in study methods to Sudore because of the high-quality Delphi process they undertook, reporting on several, extensive rounds).
One way to reconcile the findings of Morrison, et al is to recognize that reviews and large studies may not be able to make the fine distinction between broad ACP and more focused AD discussions as there is so much confusion (and overlap) in these terms. It is important to emphasize the ACP is not the same as the term Advance Directive, and I urge readers of TPPCR to be aware of the distinction. In other words, within the studies they evaluate the terms ACP and AD may have been treated as equivalent in describing the intervention, and thus obscuring outcome differences.
On the other hand, perhaps the authors are correct; ACP checklists do not provide a simple answer about what is a highly personal, nuanced, and time/location dependent decision. The guided ACP (e.g., Ariadne’s Serious Illness Conversation) is more correctly considered a scaffolding that the beginner can rely on and the expert can build upon.
The most salient difference maker for patients and caregivers lies in continuity of care with a trusted provider who can have deep (and perhaps not always difficult) conversations with them at many stages of their lives. These ongoing dialogues help develop shared understanding of what is important and when.
I think the Morrison article is thought-provoking and I welcome reader’s comments on it, and hopefully further inquiry about the studies it references.
DeCourcey, Danielle D., Lindsay Partin, Anna Revette, Rachelle Bernacki, and Joanne Wolfe. “Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness.” The Journal of Pediatrics 229 (February 1, 2021): 247-258.e8. https://doi.org/10.1016/j.jpeds.2020.09.030
Rietjens, Judith A C, Rebecca L Sudore, Michael Connolly, Johannes J van Delden, Margaret A Drickamer, Mirjam Droger, Agnes van der Heide, et al. “Definition and Recommendations for Advance Care Planning: An International Consensus Supported by the European Association for Palliative Care.” The Lancet Oncology 18, no. 9 (September 1, 2017): e543–51. https://doi.org/10.1016/S1470-2045(17)30582-X
Siden, Harold (Hal), and Negar Chavoshi. “Shifting Focus in Pediatric Advance Care Planning: From Advance Directives to Family Engagement.” Journal of Pain and Symptom Management 52, no. 3 (September 1, 2016): e1–3. https://doi.org/10.1016/j.jpainsymman.2016.05.010
St. Louis, Julia. Trends in Pediatric Palliative Care Research (TPPCR) 2021; Issue# 8: Commentary on Barks et al. https://doi.org/10.31219/osf.io/4n57t
Sudore, Rebecca L., Daren K. Heyland, Hillary D. Lum, Judith A. C. Rietjens, Ida J. Korfage, Christine S. Ritchie, Laura C. Hanson, et al. “Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus.” Journal of Pain and Symptom Management 55, no. 2 (February 1, 2018): 245-255.e8. https://doi.org/10.1016/j.jpainsymman.2017.08.025
Sudore, Rebecca L., Hillary D. Lum, John J. You, Laura C. Hanson, Diane E. Meier, Steven Z. Pantilat, Daniel D. Matlock, et al. “Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel.” Journal of Pain and Symptom Management 53, no. 5 (May 1, 2017): 821-832.e1. https://doi.org/10.1016/j.jpainsymman.2016.12.331
van Breemen, Camara. “Adapting the serious illness conversation guide for use in pediatrics.” Journal of Palliative Medicine 21, no. 12 (2018): 1683-1683.
van Breemen, Camara, Jennifer Johnston, Matthew Carwana, and Peter Louie. “Serious illness conversations in pediatrics: a case review.” Children 7, no. 8 (2020): 102.