Many clinicians across the health continuum lack the training and skill sets needed to have goals of care conversations for pediatric patients.
Advance care planning discussions are an important, but oftentimes challenging key to supporting serious and terminally ill children and their families, according to Dr. Chris Adrian, a pediatric palliative care physician and writer based in California. Adrian is also part of the Mettle Health team, which provides caregiver and patient support.
Telling a parent that their child has a terminal illness is a difficult conversation for any provider, but expanding education and training around hospice and palliative care can help break down communication barriers that can impact goals of care conversations, he said.
“We don’t get a lot of training on how to be with or hold other people’s emotions,” Adrian said during a recent Mettle Health webinar. “We do in palliative care and some other specialties, but I think that sometimes the providers just become scared, even if they may not be totally aware that they’re scared. And then that just really throws a wrench into the communications.”
Advance care planning conversations can be a driver of improved quality and reduced health care costs at the end of life for children and families.
Earlier conversations about goals of care are associated with fewer intensive and expensive care treatments at the end of life in younger patient populations, according to a study in the Journal of Clinical Oncology.
Researchers reviewed electronic medical record data for nearly 2,000 adolescents and young adults who died between 2003 and 2019. When their last documented goals of care were evaluated, 69% of these patients chose care that focused on palliation, the study found.
When advance care planning discussions happened earlier in their disease trajectories (prior to 30 days before death), adolescents and young adults were less likely to receive chemotherapy within 14 days of the end of life, as well as fewer intensive care unit and emergency room visits or hospitalizations in the last month.
“Although some interventions may be used to support palliative goals, earlier discussions have potential to reduce late-life intensive measures,” the study’s authors stated.
Though broaching these conversations can be a difficult feat with parents, their involvement and awareness around terminal illness trajectories is a crucial part of providing a quality end-of-life experience for patients and families, Adrian said.
Navigating these conversations includes a level of nuanced skills among clinicians, including knowing when and how to discuss goals of care, as well as how to include parents in shared decision-making, he indicated.
“That first conversation as soon as you verify that this really is something serious and life-limiting is to say, ‘I will need you to know that even for very treatable [illnesses], there’s a chance your child could die … but we’re going to proceed to try as hard as we can to cure your child,’” Adrian said. “We say this a lot in pediatrics, ‘You’re the expert in your child,’ and there is a model for shared decision-making. Bring parents in to keep checking in and making sure everyone’s on the same page.”
A key to advance care planning among pediatric populations is to discuss all the potential outcomes of a serious or terminal illness prognosis, according to Molly Mattocks, an end-of-life grief coach and hospice chaplain based in Indiana.
The ability to be transparent and honest is among the toughest challenges for providers, but an important piece of providing quality care to these families and children, she said. Ultimately these “hard conversations” need to be had, with practitioners engaging goals of care discussions without “beating around the bush” of the inevitable end-of-life journey, Mattocks stated.
Parents who are given the opportunity to understand and learn more about their child’s illness can make better, more informed decisions about their care, she said. Without that information, quality of life can be diminished as patients undergo too many unnecessary treatments that result in high costs, according to Mattocks.
“In my experience, doctors tend to want to sugarcoat it and want to give hope,” Mattocks said during the Mettle Health webinar. “That comes from this place of compassion, love and all these good things, but it can be misleading. [It’s] being transparent and asking clearly what [they] want to know and listening [to] what is the goal right now. It’s horrible [and] a hard thing. That’s what’s needed to make informed decisions.”
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