An early belief in pediatric critical care medicine was that children needed to be sedated and in bed to have the best recovery. However, recent studies find that complete bedrest and high levels of sedation contribute to long-term physical and psychological impairments after a stay in the pediatric intensive care unit (PICU) - a phenomenon called post-intensive care syndrome 1 Although incidence is difficult to determine, studies find that up to 80% of children may experience detriments after discharge including problems with memory, attention, cognition, and self-esteem. Motor deficits and worsening of prior disabilities are also common, and both patients and family members often experience depression and post-traumatic stress disorder.3,4,5,6
That's why, Jenna Domann, DPT, a physical therapist with MUSC Children's Health, was immediately interested when she heard about a new treatment paradigm called, ICU Liberation. "There are known harms to being in the ICU like delirium and muscle weakness from immobility. We know that the longer you're in bed and on a ventilator, the harder it is to get back to normal life after you go home," says Domann. "This new way of managing ICU patients focuses on 'liberating' them from those harms." In 2018, Domann started gathering a team to develop a pediatric program at MUSC called, Sleep, Play, Heal, following evidence-based processes for ICU liberation endorsed by the Society of Critical Care Medicine. "One of our primary goals is to minimize sedation - to use just enough for the patient to be comfortable but not more than they need," says Domann. "We see the difference in their delirium scoring, and it really helps them have a more normal daily routine. We're also working on breathing trials to help get them off the ventilator faster."
MUSC Children's Health is one of a growing number of children's hospitals nationwide that are creating formal programs and protocols to minimize sedation, optimize early mobility, and systematically assess readiness to discontinue mechanical ventilation in PICU patients. Alice Walz, MD, a pediatric critical care physician, was an early champion. "Changing ICU culture can be a slow process, and we still have a way to go, but everyone is seeing that kids can be awake and comfortable even when they're on a ventilator with various lines and tubes. We're normalizing movement as an important part of the care plan for recovery from critical illness," says Walz. "I'm thrilled at how quickly staff has rallied behind this idea of getting patients moving, because it is logistically challenging. You need nurses to be available at the same time as respiratory and physical therapists, and to coordinate all of that with patients who are comfortably awake to participate." It took a multi-disciplinary team of ICU providers many months to think through all of the logistics and develop protocols to meet the needs of patients in different medical circumstances.
Leslie Jackson's son, Xavier, benefited from the Sleep, Play, Heal program over two separate ICU admissions. "He was there for months as a baby because he had a lot of lung problems. He developed chronic lung disease and was on oxygen and spent a lot of time sedated. His muscle tone was so low; he could hardly pick up his head," says Jackson. "But Jenna was great! She came every day to help him move around and become more body aware. She helped him learn to roll over. He loved seeing her because he knew he was going to get to play. It was also really good for me, as a parent, to see that it was OK for him to move around and be up out of bed."
When Xavier was three years old, he returned to the PICU for an airway reconstruction surgery. "I knew he would be sedated again, and I really worried, because now he was an active three-year-old," says Jackson. "But Jenna was at his bedside right after surgery. She'd get him to throw a ball to her. The first time she got him out of bed, Xavier was extremely shaky, but he was determined to stand up and play with her. He was so happy! When we tried to get him back in bed, he had a fit! So, we let him stay on the floor playing a bit longer. The next day she had him trying to walk. When we got home a week later, he was almost running around the house."
Managing critically ill patients is complex and there are valid concerns about maintaining patient comfort with less sedation. But the Sleep, Play, Heal, program continues gaining traction as staff and families see that a more meaningful, faster recovery is possible when patients can participate in normal activities. "For me, the biggest landmark was when our first ventilated patient walked down the hall," says Domann. "She was awake on minimal sedation with a ventilator. She wasn't confused because we'd optimized and organized her days, and she could get out of bed and interact with her family. Everyone in the whole unit was in the hallway cheering us on. They were so surprised we did it. That was when we knew we were really getting staff buy-in and this program would take hold."
The program's success is a result of careful planning from a multi-disciplinary, collaborative team. "Our therapy colleagues do an evaluation, and we come up with a care plan that individualizes sedation and gets patients moving by the third day of their hospitalization," says Walz. "It's on the forefront of everyone's mind to get them moving from the very start." The goal is a higher quality-of-life for critically ill children and their families - not to mention the joy it brings to the unit. "I'll never forget - we had a little boy who was about nine who'd been really sick for a long time. He rode a tricycle around the unit wearing his Batman costume as part of his rehab," Walz laughs. "Someone recently donated a bicycle with training wheels. I can't wait to see who gets to ride it first."
Learn more about the Sleep, Play, Heal program at https://musckids.org/our-services/critical-care-services/sleep-play-heal.
- Walz A, Orsi M, Betters K. The ICU Liberation Bundle and Strategies for Implementation in Pediatrics. Curr Pediatr Rep. 2020. May; 1–10. [epub] doi:10.1007/s40124-020-00216-7.
- Society of Critical Care Medicine. Post Intensive Care Syndrome. Available at: https://www.sccm.org/MyICUCare/THRIVE/Post-intensive-Care-Syndrome. Accessed: June 7,2021.
- Jones S, Rantell K, Stevens K, Colwell B, Ratcliffe JR, Holland P, et al. Outcome at 6 months after admission for pediatric intensive care: a report of a national study of pediatric intensive care units in the United Kingdom. Pediatrics. 2006.Nov;118(5):2101-8. doi:10.1542/peds.2006-1455.
- Pollack MM, Holubkov R, Funai T, Clark A, Berger JT, Meert K, et al. Pediatric intensive care outcomes: development of new morbidities during pediatric critical care. Pediatr Crit Care Med. 2014. Nov; 15(9):821-827. doi:10.1097/PCC.0000000000000250.
- Colville G, Pierce C. Patterns of post-traumatic stress symptoms in families after paediatric intensive care. Intensive Care Med. 2012. Sep;38(9):1523-31. doi: 10.1007/s00134-012-2612-2.
- Nelson LP, Gold JI. Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: a review. Pediatr Crit Care Med. 2012. May;13(3):338-47. doi:10.1097/PCC.0b013e3182196a8f.