Commentary by Hal Siden, MD, MHSc, FRCPC
Feature Article: DeCourcey, D. D., Silverman, M., Oladunjoye, A.,& Wolfe, J. (2018). Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions. Critical Care Medicine, Online First.
Feudtner, C., Schall, T., & Hill, D. (2018).Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making. Pediatrics, 142 (Supplement 3), S133.
Other Articles Referenced: Feudtner C, Feinstein J, Zhong W, Hall M, Dai D. (2014). Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatrics, 14(1), 199.
It’s great to find two articles in the citation collection that are both worth a thorough read, and then get sent out by email to colleagues because I think they are relevant to their areas of practice. This is especially true with articles shared with physicians, nurses, social worker sand counselors.
DeCourcey and colleagues in Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions reveal findings about Advance Care Planning (ACP) discussions with families whose children have complex, chronic conditions. The data is accumulated over a long period of time and includes 114 bereaved parents. Notably all families valued ACP. Those who participated in ACP were more likely to be prepared for their child’s last days, and gave positive ratings to the child’s quality of life, along with less suffering for the child and less regret for the parents.
As one colleague jocularly says, “there are only 2 things a palliative care doc needs to know how to do really well – prescribe morphine and talk to families.” Communication is a fundamental skill in the Palliative Care field and more needs to be written about how best to do it and how to teach it. There are initiatives to improve “how” we engage in ACP. Work in the adult field led to the development of the Serious Illness Conversation Guide. More recent work has begun on the development of a SICG-Peds for families with a child living with a life-threatening condition (Van Breemen, “Adapting the Serious Illness Conversation Guide for Use in Pediatrics” J Pall Med, 2018 Dec 21 (in press).
The work by DeCourcey et al. supports “why” we engage in ACP. The benefits described are multi-dimensional and clearly helped prepare parents for their child’s end of life. One must be careful not to conflate ACP, which is about goals and values, with Advance Directives that are specific medical orders regarding interventions, and the sub-set that is Resuscitation Orders. The danger is that non-specialists and trainees will have a discussion with a family about a DNR order and claim that they have undertaken ACP. DeCourcey alludes to that by acknowledging in the limitations that the authors could not examine the specific quality of the ACP discussions. Thus there is an opportunity for future research to identify what occurred during helpful ACP.
One point, perhaps minor, but I think worth noting in terms of concept slippage. The authors state that they included children with Complex Chronic Conditions (CCC) as identified by Feudtner’s classification scheme. That scheme, revised in 2010, has 12 categories. DeCourcey only includes 5 CCC in this data set. They either had no children die with any of the other conditions (unlikely) or made a decision to exclude some. The concept of CCC should not become a substitute for describing a sub-group of patients with unusual neuro-metabolic-gene conditions and/or prematurity. We need to use these concepts appropriately or develop new descriptors or categorization systems.
Speaking of Feudtner, this leads me to the other article highlighted in this month’s citation list: Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making. This very interesting piece provides additional insight into the “how” and “what” of communication, specifically when we are moving towards decision-making. The authors describe a model of decision-making with 5 aspects rather than the basic choice A or B that we all likely unconsciously adopt (at least I do). To quote “…support for decision–makers is focused far too much on the details of medical intervention options and not nearly enough on assisting with the confusions, dilemmas, and self-recriminations inherent in trying to formulate a guiding personal duty to serve in the role of surrogate decision-maker.”
The work references his previous contributions about the Good Parent concept, which I believe is a very helpful lens to think about when working with families. Another concept that resonated with me is that families are in a labyrinth, and as clinicians we should recognize that is not this one decision that counts but an ongoing series of decisions and ever-elusive goals. These are just 2 of the 5 dimensions, and the article is well worth reading and sharing to understand all of them.
An unusual feature of this paper is the use of the hypothetical case presented as a multi-act play. This nicely reminds me of the similar approach Myra Bluebond-Langer used in her ground-breaking work, “The Private Worlds of Dying Children”.
One challenge that I have is how to share this knowledge with those who work most often with families. In DeCourcey’s paper, most parents wanted to engage in ACP with their sub-specialist clinician or with the intensive care team; what are the avenues to introduce those clinicians to this new and complex model of decision-making?
The authors make the case that this paper is an initial description and is in need of broader conceptualization. It is the beginning of a framework that hopefully leads to further research and program implementation.