By Dr. Adam Rapoport.
Feature Article: Birchley, G., Gooberman-Hill, R., Deans, Z., Fraser, J., & Huxtable, R. (2017). “Best interests” in paediatric intensive care: an empirical ethics study. Archives of Disease in Childhood. https://doi.org/10.1136/archdischild-2016-312076
In my role as a pediatric palliative care physician, I routinely find myself meeting with families and PICU colleagues, trying to determine the best course of action to care for a critically ill child. The ethical principle of “best interests” is meant to guide decision-making in these situations. Much of the time, all parties are able to reach an agreement, even when it leads to the decision to withdraw life-sustaining treatment and allow the child to die. But occasionally there are situations where the PICU feels death is inevitable, ongoing care is “futile”, and discontinuation of life-sustaining treatment is in the best interests of the child; yet the parents disagree.
The May 2017 “Trends in Pediatric Palliative Care Citation List” was filled with interesting new publications, but the one that most caught my eye was this article by Birchley et al. The focus of this study was how parents and staff make decisions in the Pediatric Intensive Care Unit (PICU), particularly in circumstances where the medical team recommends forgoing a child’s life-sustaining treatment.
Purposive sampling was used to recruit 14 parents and 15 PICU staff to participate in this qualitative study. Seven members from “clinical ethics committees” were also recruited, but unfortunately the findings from these interviews do not appear to be reported. The investigators found that parents and staff preferred making decisions together, but while parents believed that factors affecting the child should be the sole focus of deliberations, staff tended to consider the impact on the family. When disagreements were protracted, staff often gave parents more time so that their “feelings could adjust”; staff avoided turning to the courts as the ultimate arbiter of unresolved disputes.
Overall, I found the results of this study to be congruent with my own lived experience. Parental conviction that their child’s interests alone should guide decision-making is admirable, but unrealistic and even undesired in my opinion. Pediatric palliative care identifies the family, not only the child, as our unit of care; more often than not I have found that we are able to successfully take into account the interests of all. I was encouraged that PICU staff preferred to give parents more time, rather than turning to the courts, even when disagreements were prolonged. The emotional experience of witnessing one’s child not improve, and possibly deteriorate, despite best efforts of PICU staff is often more helpful to parents than recurrent family meetings or threats of legal recourse.
But one aspect of this publication did trouble me. The authors concluded that “alternatives to the consensus approach” may be needed in light of clinician reluctance to utilize the courts when agreement cannot be reached expeditiously. Moreover, the authors suggest that one such alternative would be to seek parental assent in these situations, as opposed to their consent. In other words, while parental agreement to forgo their child’s life-sustaining treatment would be desired, it would no longer be necessary.
Although the authors state that clinicians have “doubts regarding the efficacy of the legal processes” to resolve disputes (presumably in favour of the PICU’s position), this is not supported by the quotes shared in the article, nor is it consistent with Canadian case law (I am not familiar with UK case law where this study took place). Rather, the primary reason for avoiding the courts in my opinion, and as shared by the interviewed clinicians, is that a combination of patience, compassion and a trusting relationship with parents can eventually resolve most disputes. It may be that the authors are primarily concerned about the length of time to reach resolution. So let me ask – just how long should it take parents to accept their child’s death? Personally, I’m amazed at how often parents accept our medical recommendations to withdraw life-sustaining treatment after just a few days or weeks in the PICU. I think this speaks to the deep trust that parents have in their child’s clinicians, whom they correctly assume also want the best for their child. Any unnecessary suffering by a child is unsettling, but we must remember that our own anguish is likely a fraction of that experienced by the parents. Fortunately, there is much that we can do to minimize the suffering of a child while resolution is being sought, and in my experience PICU clinicians are among the most skilled at ensuring a child’s comfort. Finally, the authors may be troubled by the unacceptable toll that protracted disputes place on the already limited resources of the PICU. However, despite the many times I hear this concern, I’m not aware of any published evidence to support it. Our own PICU in Toronto is regularly short on beds and staff, but never has anyone suggested to me that the cause was children being inappropriately kept alive on life-sustaining treatments.
Unilaterally resolving disputes with parents may facilitate a quick resolution, but the goal of medicine is not to make things easier for healthcare providers; the goal is to help those in need of our assistance. In pediatric medicine those in need are the child and the family.