Trends in Palliative Care Research 2024; Issue #03

Commentary By:

Paula McPoland – Seattle Children’s Hospital, Seattle, Washington, USA – I am a pediatric palliative care provider and hospice physician. I also work in the fellowship and with learners to support their education and growth in HPM.

Feature Article

Sarpal, A., Miller, M. R., Martin, C. M., Sibbald, R. W., & Speechley, K. N. (2024). Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers. Front Pediatr12, 1272648.


In the article Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers by Sarpal et al, the authors interviewed PICU providers over a 6-month period to assess whether providers who perceived potentially inappropriate treatment (PIT) experience increased moral distress. In the article, PIT was defined as “treatment sought by a patient or surrogate decision maker that has some possibility of achieving a physiological goal; however, clinicians believe the treatment is non-beneficial and is ‘outside the boundaries of accepted practice due to other ethical considerations’.” Moral distress was defined as “the anguish (experienced) in response to a situation in which the person is aware of a moral problem, acknowledges moral responsibility, and makes a moral judgement about the correct action, yet as a result of real or perceived constraints, participates in perceived moral wrongdoing.”
Thirty-three of 54 providers identified one or more instance where they perceived that “ongoing active intervention” was potentially inappropriate. Ninety percent of the time, these instances were associated with provider reports of increased moral distress. Interestingly, 75% of the time this increase in distress was experienced in the care of the same 3 patients. The study shows that, whether due to chronicity, medical complexity, technology utilization or challenging communication, moral distress is common and often associated with a small number of cases.
I previously participated in the care of a child who represented one such case. The child had a rapidly progressive terminal diagnosis. Their family understood the prognosis and chose to pursue placement of a tracheostomy for long-term ventilation.  In the months after placement and prior to the child’s death, providers expressed sources of moral distress similar to those identified by the study providers. Specifically, they noted the patient did not have a meaningful quality of life. This led to concerns about prolonging the suffering of the patient and their family and causing harm by continuing treatment. Team members also questioned appropriate resource utilization and expressed not understanding the goals of the family.
Each of these sources of moral distress represent both the compassionate desire of the providers to best care for the patient and family as well as the challenging questions presented by such cases. As the authors of the study identify, potentially inappropriate treatment is based on perception however, perception can be impacted by previous experiences and biases, both individual and structural. Thus, there is a risk that tension can develop between our perception of what is appropriate and the family’s perception of the same. Similarly, the family may have goals that are not strictly physiologic, but which are equally, if not more important to be considered in the care of their child.  For the family of the child I cared for, their goals were comfort and time and mechanical ventilation provided both. It gave them space to process and connect in ways meaningful to them, something far more important in terms of their grief, bereavement, and health as a family.
The question, which the study begins to address, is then how can we best support our colleagues in their reasonable experiences of distress while also centring families’ goals and perceptions. Some proposed mechanisms to mitigate moral distress include improved communication and clarity of family goals, centring the personhood of the child, involvement of palliative care and bioethics, consistent care conferences with families and amongst interdisciplinary team members.  All are important and valuable ways to ensure goal and treatment alignment. Yet, we often cannot truly know for an individual family what in their life experience led them to their decisions or what impact those decisions will have on their present and future. It remains important then to be a listening ear for our colleagues while also advocating for families, even (and likely most importantly) when they make decisions that we think we would not make for ourselves. As in the case of this child, it can be difficult to predict when a treatment perceived as potentially inappropriate will be the precise treatment that provides a space for unexpected outcomes and is exactly what is needed to support families as they experience unimaginable loss.

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