Trends in Palliative Care Research 2021; Issue #03

Commentary by Dr Christina Vadeboncoeur, Associate Professor, uOttawa, Medical Director, Palliative Care Program, CHEO and Roger Neilson House, Ottawa Canada

Feature Articles:

Guttmann, K., Flibotte, J., Seitz, H., Huber, M., & DeMauro, S. B. (2021). Goals of Care Discussions and Moral Distress among Neonatal Intensive Care Unit Staff. J Pain Symptom Manage.

Dryden-Palmer, K., Moore, G., McNeil, C., Larson, C. P., Tomlinson, G., Roumeliotis, N., Janvier, A., & Parshuram, C. S. (2020). Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs. Pediatr Crit Care Med, 21(4), 314–323.

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The fact that there were two articles looking at moral distress in Pediatric (PICU) and Neonatal Intensive Care Units (NICU) this month caught my eye. As we recall, moral distress refers to experiences arising from healthcare professionals being constrained in ways that prevent them from doing what they believe is the morally correct course of action. Each article took a different approach to the issue. 

The article by Guttmann et al focused on comparing the baseline level of moral distress on a typical day in the NICU with a measure of the level of moral distress in staff who had participated in a conversation about goals of care. The latter measure was taken within 10 days of the goals of care conversation. The authors found that, while on average providers experienced increased moral distress after a discussion of goals of care, some providers reported a greater increase while others reported a less significant increase, no change, or even a decrease in moral distress. Providers who were not satisfied with the discussion had a more significant increase in moral distress as compared to those who were satisfied.

The article by Dryden-Palmer et al focused on measuring moral distress in clinicians who work in PICUs and NICUs in Canada. The survey included responses from 43% (34%–57%) of frontline staff. The mean Moral Distress Scale-Revised (MDS-R) score was within the range seen in previous studies. High scoring items were related to end-of-life decision-making: actively following requests for ongoing care or passively continuing curative care at end of life and acts of providing care perceived as death prolonging or giving parents what was perceived as false hope. The greatest variability in the MDS-R score related to differences between individuals. Higher scores were found in nurses, respiratory therapists, females, and those who had been in the ICU longer.

Moral distress is evident every day to those who provide palliative care to children. Demonstrating that lack of satisfaction with a goals of care discussion leads to a more significant increase in moral distress, and that those who have worked in an intensive care setting longer experience more moral distress are the first steps. We as providers, teams and institutions must develop strategies to support clinicians who provide care where the outcomes are uncertain.