Pediatric palliative care providers have room for improvement when it comes to understanding the factors that can impact health care decisions among seriously ill young adults and adolescents.
A diverse range of social, emotional and psychological developmental factors can complicate the ability of pediatric palliative providers to navigate advance care planning conversations and deliver goal-concordant care, according to Linda Radbill, pediatric psychologist at Children’s Hospital Los Angeles.
Understanding the multitude of forces fueling decision-making processes among pediatric populations is a pivotal part of improving quality outcomes, Radbill said at the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice & Palliative Nurses Association (HPNA) Annual Assembly.
“Adolescents are impacted by different factors,” Radbill said. “Adolescence is a period for social and emotional development. [Some] skills … might take longer for them to develop, and how that’s going to impact both their decision making but also just their developmental milestones in general that will impact decision making. We also recognize their behavioral patterns that develop in relation to pediatric chronic and terminal illnesses, and that this can impact the normal developmental trajectory. It’s important to consider all of those factors when we’re looking at adolescent decision making.”
Radbill was among the researchers that recently dug into the unique challenges faced by adolescent and young adult patients between 16 and 26 years old. Patients in this age group suffered from neurocognitive and emotional development challenges that can impact their experiences in decision-making and pose “inherent conflicts” in discussing the end of life, researchers found in a study published in the Journal of Pain and Symptom Management.
Some pediatric illnesses can impact cognitive development, which hinder the ability to understand a disease prognosis, as well as care options and illness trajectories, Radbill stated. Peer and family support structures, education levels, cultural differences, language barriers and health literacy are additional significant factors in adolescents and young adults, she added.
Providers can often focus on parents during conversations around health care decisions, Radbill stated. Involving adolescents and young adults more in advance care planning is important to understanding their goals of care and thought process, according to Radbill.
“Medical situations do not necessarily allow for calm consideration,” Radbill said. “So having to make better major medical decisions can cause distress that may diminish their decision-making capacity. We have an opportunity to include the adolescent in these conversations so that even if they’re not the ones making the decision, they’re learning how to make decisions and what the thought process looks like.”
Older adolescents and young adults may not yet have the full developmental maturity of adults, but they face similar, difficult decisions when it comes to serious illness care, according to researcher Natalie Truba, pediatric psychologist at Ohio-based Nationwide Children’s Hospital.
Pediatric palliative care providers can cultivate a variety of strategies to aid tough decisions among youth populations, Truba said. These strategies often include careful consideration of specific decision-making factors as well as developing strong communication skills among providers, she indicated.
Motivational interviewing is among the most commonly used strategies to improve decision-making processes among seriously ill pediatric populations, according to Truba. This methodology involves exploring person-centered goals and identifying behaviors that modify and shape their desired health directions, she stated. The intervention/communication style can help providers better understand what is important to adolescent patients and how to address barriers to goal-concordant care.
Other successful communication strategies examine the motivations, internal values and involve a collaborative approach between providers, patients and their families, Truba stated. Having staff trained in various communication strategies is a key part of improving quality outcomes among seriously ill youths, she said.
We want to make sure that they have an accurate understanding. When we miss that mark as providers, that’s where we experience a strain in our relationships without patients and their families.
— Natalie Truba, pediatric psychologist, Nationwide Children’s Hospital
“Changing behaviors is a robust process and it often takes time for many people, especially youths as their brains are evolving and they’re dealing with these very stressful experiences that we’re trying to help them think about,” Truba said during the assembly. “We want to make sure that they have an accurate understanding. When we miss that mark as providers, that’s where we experience a strain in our relationships without patients and their families.”
