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 #2

March 1, 2017

Dr. Hal Siden

The December TPPCR list has a rich collection of 28 citations covering a wide variety of aspects of pediatric palliative care. Similar to the November list more than one article stood out. I observed a thematic overlap in at least 5 of the publications that focus on spirituality (Arutynyan), factors impacting decision-making (Bluebond-Langer), advance care planning (DeCourcey), meaning-making (Suttle) and the impact of information on satisfaction with care (also Suttle). Together these articles provide evidence that should help us develop a holistic approach in our care.

In Arutyunyan’s article we learn that half of the respondents had spiritual beliefs influencing their decisions, and that half would welcome having their physician ask about such beliefs if their child was seriously ill (are these the same half?). Most, however, in a 2:1 ratio would rather speak to a chaplain than a physician for spiritual support. So the message is, ask about spirituality as a source of support, and if the answer is affirmative, then call the chaplain.

Bluebond-Langer and colleagues explore the relationship between parents and clinicians as it is formed in the consultation process. They elucidate factors that bear on the success of clinical consultations as a means to support this relationship. Figure 2 is a helpful summary. Having an approach that “appreciates the dilemmas” (I like the phrase – it reminds us of the inherent uncertainty of our work) is key to helping everyone live with the decisions they make. (Is this an important outcome? Compare to Duc, Widger, et al also in this month’s list. Another way to think about this, quoting Gerri Frager, is that “DNR means Do Not Regret”). This is an article I will share with colleagues in Oncology and other fields.

There were several abstracts on palliative care published from the 46th Critical Care Congress held in January 2017, and the next 3 citations are examples. Palliative care appears to be an integral topic at this Critical Care meeting, as it should be given the number of people who die in the ICU, or at the very least qualify as having a life-limiting or  life-threatening condition. In their abstract DeCourcey and co-authors discuss Advance Care Planning  for children with medical complexity. As pointed out by Murphy (also in the December TPPCR list) the medically complex group is one of the largest groups of children receiving PPC services in the U.S. In Decourcey’s study bereaved parents reported on the value of Advance Care Planning to them. There was a positive correlation between Advance Care Planning with Quality of Life, preparation, and preferred location of death. They were less likely to be in the ICU and more likely to have an Advance Directive that declined CPR resuscitation.

In the first of 2 abstracts, also from the Critical Care Congress, Suttle & co. build on work by Cadell and others regarding the importance of meaning-making in post-traumatic growth and in experiencing a non-complicated grief.

In the second abstract Suttle’s group address the relationship between parents’ knowledge of medical events and satisfaction with care. Satisfaction may not ultimately become The Outcome of palliative care, but currently it is one of the core constructs for what we are trying to achieve. In this abstract, parents who feel more informed about medical events had higher satisfaction with care. The sample was small (26 parents) so caution is required in interpretation and generalization. It is also notable that reliance on “support staff” (nurses, social workers) correlated with satisfaction — leading me to wonder about physicians as communicators in ICU.

How do these articles and abstracts all tie together? They point to the importance of all of the “soft” arts of pediatric palliative care – asking about spirituality; undertaking broadly-based Advance Care Planning well beyond the nuts and bolts of Advance Directives and DNR orders; facing uncertainty in relationship; informing and searching for meaning. They also suggest the importance of the team – nurses, social workers, chaplains, which is not always apparent in the Medicine literature. The next step is to develop an evidence-based and competency-based curriculum to teach the necessary skills to clinicians in PPC. Being sensitive and well-meaning, and attending a handful of workshops, does not make one the accomplished holistic practitioner that this work requires at the level evidenced in this month’s publications.

As for conducting research and developing evidence to support training and education, last month I mentioned Ken Pituch’s work but said it had not been published [yet]. Lo and Behold we now have Pituch, et al, “Multi-disciplinary pediatric end-of-life training improves staff preparedness and lessens staff distress” published as an abstract in the Journal of Pain and Symptom Management from the presentations at 21st International Congress on Palliative Care. I look forward to seeing a full publication of their work.