Commentary by Dr. Arshia Madni. Quality of Life for All, St. Jude Children’s Research Hospital
Feature Articles: Evans, A. M., Jonas, M., & Lantos, J. (2020). Pediatric Palliative Care in a Pandemic: Role Obligations, Moral Distress, and the Care You Can Give. Pediatrics.
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When I began my career in pediatric palliative care, I felt well trained to navigate the challenges that accompanied caring for unique family units in medically complex situations. I have grown to expect challenges brought on by the child’s medically complex diagnoses or working within the confines of each family’s religious or social belief system in order to help ease suffering to the best of my ability. However, COVID-19 has thrown a surprise twist in the practice of pediatric palliative care (PPC) bringing with it an “indefinite time of uncertainty” as this article by Evans et al has addressed.
I chose to discuss this poignant paper by Evans et al as it has beautifully describes the moral distress and ethical dilemmas that many of us practicing PPC are facing for the first time since the arrival of this pandemic. As a palliative care physician who primarily works in pediatric palliative oncology, the case of Felicity was like an excerpt out of my current life story. The painful conversation of which parent is safely allowed at bedside of a dying child has become all too familiar. Evans et al accurately ] describes it as a “contrast between the service one would seek to provide (and which would be recognized by peers as optimal or even adequate) and the service that one can provide can feel debilitatingly unacceptable.”
Being the one who must communicate new hospital policies related to the pandemic that is at odds with what I think is ethically correct in end of life scenarios has been a repeated theme in my practice and has been outlined by Evans et al exactly as I have viewed them. Let’s look at the case of David, where his mother is fearful that he will not have the option of a PICU bed if he were to become acutely ill as predicated by his current clinical trajectory and instead must stay home because an adult patient’s needs may trump his own. Our aim as the palliative care team has always been to discuss goals of care and use a shared decision-making model to arrive at the best solution for medically complex situations such as these. Limitation of resources and hospital policies impact the way we usually practice during the pandemic leaving David’s mother with very limited options.
What I really appreciate about this paper is how Evans at al. has reframed our responsibilities during this pandemic allowing me to come away with less guilt and more empowerment after reading this article. The pandemic is out of our hands and we can work on “…shifting focus from what we cannot do to what we can do…”. They helped me realize that the families we work with have been working with uncertainty well before COVID-19 and have built-in resiliency that we cannot fathom. As palliative care professionals we can continue to provide open honest communication, continue to walk with our family’s during their grief journey, while understanding we are not in control of the pandemic1.
1. Wallace CL, Wladkowski SP, Gibson A, White P. Grief During the COVID-19 Pandemic: Considerations for Palliative Care Providers. J Pain Symptom Manage. 2020;60(1):e70-e76. doi:10.1016/j.jpainsymman.2020.04.012