When a child is admitted to the Pediatric Intensive Care Unit (PICU), they will often spend days or even weeks there. It’s a harrowing experience for them and, for their family, it means sorting through complicated treatment options and making tough decisions – all while coming face-to-face with the possibility of losing their child.
“It’s one of the most stressful experiences a family can have,” says Dr. Ross Hays, and it can be so traumatic that about 24% of families suffer from post-traumatic stress disorder (PTSD) after they leave the PICU.
Hays is investigating whether an innovative approach – called palliative care – can transform how hospitals help these families cope. His team is leading a five-year, $3.1 million study to see if improving doctor-family communication, and giving families more emotional support, can reduce their stress in the PICU and once they go home. It’s the largest pediatric palliative care study ever funded by the National Institutes of Health.
“We think that, if you give extra support to these families early on, you may be able to prevent some of the damage that comes from the stress of the experience, rather than having to treat it later,” says Hays, who directs Seattle Children’s palliative care program and is a principal investigator in the Center for Child Health, Behavior and Development.
One of the Nation’s First Palliative Care Programs
When Seattle Children’s started one of the nation’s first pediatric palliative care programs in 1997, Hays jumped at the chance to lead it. Palliative care aims to reduce suffering and improve quality of life among patients with serious or life-threatening conditions, and Hays had spent years caring for children with muscular dystrophy when there were no effective treatments. That meant helping families make the most of a situation where their child had intense medical needs and would likely die at a young age.
“When people started defining palliative care, I thought ‘that’s what I’m already doing’,” Hays says.
Now Hays’ team, called the Pediatric Advanced Care Team, delivers palliative care to patients throughout the hospital. After a family is referred to PACT, Hays or one of his colleagues becomes their point person. They help the family clarify their care goals and understand treatment options. And they remain the family’s trusted contact throughout their hospital stay, ensuring they have a consistent provider as doctors and nurses rotate in and out.
“Our work is based on research from Boston Children’s that shows families in these situations want honest communication above all, delivered in a way they can understand it,” Hays says.
That same research showed that families need emotional support and want providers to respect their spiritual beliefs. Hays’ team, which includes experts in everything from pain and symptom management to psychosocial support, provides this through a process that starts with winning a family’s trust.
“Sometimes we just stop by a family’s room to shoot the breeze and see if there’s any way make them more comfortable,” Hays says. “That helps us build a relationship.”
Improving Communication in the PICU
Hays’ current study rests on the hypothesis that palliative care may be especially valuable in the PICU, where more than 60% of hospital deaths occur. The study enrolls families who are in the PICU for more than seven days, and delivers an intervention that revolves around periodic “care conferences.”
Hays’ team uses these conferences to bring together the specialists and nurses involved a child’s care, making them available to answer a family’s questions. The palliative care providers help interpret the answers and sort out conflicting recommendations.
“The trick is to get inside parents’ heads and figure out what questions they need to be asking – but can’t think of because the environment is so overwhelming,” Hays says.
Hays and his colleagues follow up with regular visits to update families about their child’s health. They also provide the intervention group’s participants with emotional support and resources, such as written transcripts of care conferences, so that families don’t have to rely on their memories of complicated conversations.
Participants fill out questionnaires that indicate whether they are dealing with anxiety, depression and other things that increase their risk for PTSD, during and after their stay. Hays’ research team is also investigating whether families who receive the intervention leave the PICU earlier than families in the control group, and if they report better communication and less conflict with their providers.
Hays expects to have the study’s results in 2016 If the intervention has positive effects such as reducing stress and PTSD, it could support the movement to make palliative care consultation standard practice at many other hospitals.
For Hays, it’s another step toward improving the lives of some of the hospital’s most vulnerable patients and families.
“All of these families are in crisis, but they also show an amazing amount of courage, grace and kindness,” Hays says. “It’s a privilege and an honor to work with them.”