Pediatric noninvasive ventilation requires shared decision-making

Key takeaways:

• There is a qualitative knowledge gap about the experiences of families experiencing noninvasive ventilation.
• Emerging themes included decision-making, living with care and treatment at the end of life.

BOSTON — Decisions about pediatric noninvasive ventilation need to align with the child’s and family’s goals at all stages of the child’s life and at the end of it as well, according to a presentation at the CHEST Annual Meeting.

“I have the privilege of sharing with you just a brief glimpse into the path of what parents shared with me,” Deborah Olmstead, MN NP, pediatric nurse practitioner, noninvasive ventilation (NIV) program, Stollery Children’s Hospital, said during her presentation.

NIV for children often begins during acute illnesses or hospital stays and before advanced care planning, with increasing use to provide breathing support and potentially prolong the lives of children with life-limiting conditions (LLCs), Olmstead said.

“The qualitative data documenting the lived experiences of these children is a distinct gap in a growing body of quantitative literature,” she said.

The researchers used an interpretive descriptive method to ascertain a greater clinical understanding of how NIV impacts children with LLCs as their illness progressed and through the ends of their lives.

Using purposive sampling, the researchers conducted in-depth interviews with bereaved parents of children with LLCs who used NIV.

“Most of these children were initiated on noninvasive ventilation during an acute illness in the PICU,” Olmstead said. “All of them were children of medical complexity who were not able to communicate verbally, and all of them were on noninvasive ventilation for more than 3 months.”

Three themes emerged during the interviews: decision-making during the child’s life trajectory, the importance of the child’s voice during the illness, and the end-of-life experience.

Since initiation of NIV treatment occurred during acute events, Olmstead said, the lack of time left parents feeling limited in what they could say and prompted medical teams to direct decisions to begin care.

“We definitely did not have a choice,” one parent reported. “We were informed that was what he needed, and it was our next step. I really pushed back a lot.”

“For a child who never spoke a day in his life, he had so much to say, and we had to listen,” one father said.

One of the mothers said that her son knew when he needed his bilevel positive airway pressure (BiPAP).

Once NIV had been initiated for these patients, Olmstead said that the child’s voice became the basis of the parents’ decision-making around its use.

“Although these children were not able to communicate early, they really directed the amount of time on NIV and when it was used,” she said.

The parents also discussed how daily life was difficult in the beginning of treatment, with some saying that they had to torture their children to save their lives.

“They felt like they had to do it,” Olmstead said.

One mother said that her son hated NIV and did not like anything on his face or head, making the treatment difficult at first.

“It was hard for us when we saw him crying,” another mother said about her son’s response to BiPAP. “It was just a hard time for us and for him.”

But parents said that, over time, they saw how treatment supported their child.

“It gave us more time, gave him more life, and gave him a quality of life,” one mother said. “It helped him to breathe, and he could get his energy back, and instead of putting all his energy into breathing, he could put his energy into living, and that was a big one for us.”

In addition to better quality of life, parents also said there were fewer hospital stays and that their children were sick less often, although challenges persisted.

“As time went on and their child required more noninvasive support, then equipment issues came into it,” Olmstead said. “Some parents talked about not being able to see their child’s face. They talked about their homes becoming mini hospitals.”

Some parents even said that, upon reflection, they were not sure that NIV had helped their child. One parent reported that they had to use the full face mask when the skin began to break down.

“So, there were a lot of challenges,” this parent said. “There were preparations and challenges for him and for us. It was a lot of work.”

“No, it wasn’t helping him,” another mother said. “It was just keeping him alive. It was just keeping him breathing — give him the air and the oxygen and that’s it.”

At the end of life, breathing supports varied, with some children remaining on NIV, some having their NIV removed and some using intubation.

“Probably the thing that parents most talked about was the comfort of their child and how important that was,” Olmstead said.

While some deaths were comfortable, Olmstead said, some struggled, with some struggles related to their NIV treatment.

“He went very peacefully,” one mother said. “So, that was a huge help because that’s all I wanted was for him to go peacefully.”

However, another mother said that her son was fighting the NIV so much that he broke the skin on his knuckles.

“When he died, he had the scabs from fighting his BiPAP,” she said.

Olmstead also said that the way these parents discussed the end of their children’s lives was very powerful.

“These parents were medical experts. They knew everything about their child’s medical care, and they were involved in it all along,” she said. “But at the end of life, they talked about how they needed to step back, and they just wanted to be parents, and they wanted the medical team to make any life-ending decisions.”

One mother said that she reached the point where she did not want to make any decisions anymore.

“I’m just going to be his mom,” she said.

“We’re the parents,” another mother said. “We can’t just say, ‘Stop everything.’”

One father noted how much he learned from his son.

“He definitely showed me. He was a huge teacher,” the father said. “He helped me to hopefully make decisions that were in his best interest.”

“So too the parents were our teachers in this study, as they shared their meaningful and very personal narratives about their child,” Olmstead said.

The use of NIV among pediatric patients requires a commitment to shared decision-making, Olmstead said.

“That means between the medical team, the parents and the child, and preferably before an acute event, that prioritizing the child’s comfort and life is imperative,” Olmstead said.

“At the end of life, the parents’ roles change, and they need the medical team to provide the direction on any life-ending decisions,” she continued. “Parents cannot and should not feel that they chose to end their own child’s life.”

Olmstead concluded by thanking the parents for their courage in discussing their children and the journeys they shared.