This is the second post of a two-part series on children with complex medical needs. (Read the first post.) Details on some patients have been changed for privacy reasons.
Led by attending physican Mindy Morin, MD, MBA, the Complex Care Service team starts down the 9th floor hall at Boston Children’s Hospital, pushing a cart carrying a computer and folders full of paperwork. They’ve just spent about an hour discussing each patient; now it’s time for morning rounds on the floor.
All the patients—some children, some adults—have illnesses affecting multiple systems in their body. Many are dependent on ventilators, feeding tubes and other technology. They are seen by physicians from multiple departments at the hospital. Morin and her colleagues provide the glue.
Some patients are asleep, their families off at work; some are attended by families who sleep in the room with them; others are rarely visited. Some smile and blow raspberries, some have limited or no social interaction. In one room, Morin lingers to talk politics with an adult patient who is still seen at Boston Children’s for his congenital condition.
“As medical advances have been made, we see more and more children living with previously fatal conditions,” says Morin, as team pauses at the nursing station. “Medical systems need to adapt to their need for ongoing chronic care as they live into adulthood. It’s a real societal issue: How are we going to cope with the complexity and the resulting expense of these patients?”
Under health care reform, financial risk is being shifted to healthcare providers through global payment contracts, Accountable Care Organizations and other arrangements. That creates an incentive for many providers, especially those in the community, to avoid caring for very sick patients. Recent data show that more and more of the sickest children are ending up at children’s hospitals, especially those with neurologic impairment. Many of them are “frequent flyers,” with multiple repeat admissions.
“Unfortunately, a lot of the conditions we see are genetic; we can’t fix them,” Morin says. “Improving the quality of life for kids and parents has to be the goal of therapy, and we try to frame every clinical decision that way.”
Much of this boils down to care coordination—something children with complex conditions desperately need, and something that isn’t adequately reimbursed in the current health care structure. To get more resources, the CCS is trying to document ways in which the service saves money by preventing unnecessary hospitalizations and tests. This isn’t as easy as it sounds: a negative is hard to prove. But so far, the CCS has been able to demonstrate that follow-up phone calls and clinic visits can reduce readmissions occurring within 7 days.
Morin also hopes to launch a telemedicine project allowing the CCS team to check in with patients remotely after discharge, avoiding the need for families to return to the hospital for follow-up.
Afraa Bakhit lights up when Morin enters her room with an Arabic interpreter. She kicks her legs, giggles and blows bubbles as Morin and pediatric resident Grant Rowe, MD, play with her and gently check her vitals. Morin once spent half an hour playing with Afraa when she was in the ICU. “We fell for each other,” she says.
Afraa’s grandmother asks through the interpreter whether she can take Afraa out of the room. Her eyes dart eagerly to the door whenever it opens, and when she’s picked up, she makes it clear she wants to go out.
“Please reassure Grandma that her request is completely appropriate,” Morin tells the interpreter. “We just need to get the OK from her immunologist—we want to make sure she’s safe.”
In another room, Morin and Rowe discuss IV feeding with the family of a child with pancreatitis, who came here for a “cleanout” of his bile duct and is ready for discharge. His father asks if the feeds could occur overnight. Fitting frequent feedings into the family’s day-to-day life is a bit of a logistical challenge, since he needs to be fed 16 hours a day, and the nutrition bags need to be changed every four hours.
It’s the kind of challenge families of children with complex chronic conditions face every day, and for which little support is available. The CCS works closely with parents to provide systems of care that they can reasonably replicate.
“It would take a few days of him being here, but we can definitely work on that,” Rowe assures the boy’s father.
“What happens inpatient is not always possible to carry out at home,” says Morin after they leave the room. “Most of our families are right on board with us—they just need help.”
Morin and her colleagues also worry about what will happen as healthcare reimbursement diminishes. “I’m afraid most providers will be unable to take good care of children with special health care needs,” she says. “You can’t coordinate care for one of these patients in a 15-minute clinic visit.”
Since the day of this story, Afraa became critically ill and needed to go on ECMO to support her heart and lungs. She has come off ECMO and her care team is working to wean her from the ventilator. Carlos has been discharged from the hospital and is receiving outpatient therapy with Humira, a treatment for his autoimmune disease, every two weeks while staying with relatives outside Boston. His colitis is being monitored; plans are underway for a return to Puerto Rico in December.