Commentary by Dr. Dave Lysecki
Feature Articles: Fayed, N., Guttmann, A., Chiu, A., Gardecki, M., Orkin, J., Hamid, J. S., Major, N., Lim, A., & Cohen, E. (2018). Family-provider consensus outcomes for children with medical complexity. Developmental Medicine & Child Neurology.
Friedel, M., Aujoulat, I., Dubois, A. C., & Degryse, J. M. (2019). Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review. Pediatrics, 143(1).
Widger, K., Medeiros, C., Trenholm, M., Zuniga-Villanueva, G., & Streuli, J. C. (2018). Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review. Journal of Palliative Medicine.
If a tree falls in the woods, and no one is around to hear it, does it make a sound?
If a child with a known life-limiting condition dies in the back of an ambulance, with an inadequately prepared family, after months of fractionated care and suboptimal symptom management, and with little or no bereavement follow up: do they make a sound?
Morbidity, Mortality, Patient Safety, Survival rates: these are major drivers of change in health care systems. But what about outcomes for the child whose death is expected, is the system listening? What are we listening for?
This month, I’d like to highlight 3 important papers that can help us listen:
The article by Fayed et al. is important. We exist at a revolutionary time of patient/family empowerment. The curtain has been lifted on health care. There is growing easy access to both reliable and unreliable medical information. For professionals, there is a growing volume of medical literature and no one can “know it all”. For families with a rare condition, it is common for them to know more about their condition than most of the health care practitioners they encounter. And yet, importantly, a google search does not replace years of education and experience. Partnership is key.
In this article, authors took a hard look at what outcomes matter for children with medical complexity. They identified almost 1600 outcomes in the published literature, which were grouped into 69 candidate outcomes. The authors then partnered with both families and health care providers in the process of identifying the most important outcomes via surveys and consensus meetings. The process widdled the list down to 16 key outcomes that tell us, “What is important? For which outcomes should we be listening?” These outcomes are specific to living children with medical complexity, but the admirable process could also be replicated to examine end-of-life care and bereavement outcomes.
Friedel et al. and Widger et al. both undertook large scale literature reviews exploring indicators of the impact of Pediatric Palliative Care interventions – the papers found scarcity/inconsistency in the assessment of programmatic interventions. Both studies identified the need for consensus tools to measure pediatric palliative care outcomes and both called for partnerships with patient and families in the process.
To guide patient care, we need to know: What matters?
To guide program development, we need to show: What difference are we making?
The papers highlighted this month are positive steps in the long process of eventually getting to useful tools to study the metrics of palliative care for children and to demonstrate the value of this critically important work.