Trends in Palliative Care Research 2019; Issue #10

Commentary by Dr. Hazel Maria Gutierrez Ramirez

Feature Articles: Cote, A. J., Gaucher, N., & Payot, A. (2019). Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties. Paediatrics and Child Health (Canada), 24 (Supplement 2), e25.

Other articles referenced: Amy Sanderson, MD; David Zurakowski, PhD; Joanne Wolfe, MD, MPH. Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics. October 2013 Volume 167, Number 10. 954-958.

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Discussing goals of care (GOC) during acute deteriorations in patients with life threatening illnesses in our pediatric tertiary care hospital is very much like a tennis game: Nobody wants to have the ball on their side. One single little child with a severe threatening illness, admitted to the emergency department (ED), may involve many specialists around his care (sometimes more than the fingers of our hands), but none of them are willing to discuss this emotional but very important topic with the parents. Why is it so difficult to decide who should discuss goals of care during acute deteriorations in patients with life threatening illnesses?

The abstract from Cote et al is interesting because the authors were able to explore the perceptions of diverse pediatric specialists involved in the care of children with life-threatening illnesses with regard to GOC discussions and management during unexpected acute clinical deteriorations. They conducted a survey to study four scenarios of children with advanced life threatening illnesses, hypoplastic left heart syndrome (HLHS), static encephalopathy, spinal muscular atrophy (SMA) and refractory leukemia, each one being presented to the ED with respiratory distress. Sixty pediatric specialists completed the study, 80.4% of whom reported an interest in pediatric palliative care. The study found out that a) GOC was best discussed before an acute deterioration since acute deteriorations were not seen as an opportune moment to initiate discussions about GOC; b) validating GOC was necessary and not discussing it was unacceptable; and c) pediatric specialists were seen as the most suitable teams to initiate these discussions, while the emergency department role was unclear. The authors concluded “Discussing GOC in the ED during exacerbations is complex, involving many stakeholders, who may not always be available to help in decision-making processes. Advanced care planning with these families is essential to prepare them for acute health events”.

Most of us working in the field of pediatric palliative care can relate to these findings. Although we already know that GOC should be addressed during the child’s periods of stability rather than during an acute illness, in my practice, the truth is that GOC discussions often take place at the ED during an acute illness or when the child’s death is almost imminent. A strategy that I have found so useful is that once the child survives the acute illness and the parents prepare for their child’s discharge from the hospital, return to the subject through an interdisciplinary meeting with the parents is very important. Everyone calms down because the child is going home but, at the same time, this becomes a great opportunity to get all of the child’s specialists involved in his/her care into the same room. As my mentor taught me during my fellowship: “Mom and Dad will go home thinking about the idea”.

According to Sanderson, A et al (2013): “Interventions aimed at improving clinician knowledge and skills in advance care discussions as well as the development of orders that address overall goals of care may aid clinicians in making informed, appropriate medical decisions for patients with life threatening conditions.’’ Thus, it is pivotal that we, as pediatric palliative physicians, involve ourselves in the educational aspect of providing communication strategies to the new generations of pediatricians, as they will be faced with this scenario even more than before when caring for children with life threatening conditions.

Instead of playing tennis, let’s play football – keep possession of the ball, learn how to shoot it and score a goal. In essence, we have to teach health practitioners patiently how to change their game strategy when discussing GOC. If we all work together, we can achieve our goal, but we just have to wait for the right moment.