CAPE: Home visits make a comeback
For children who depend on some form of medical technology in daily life—a feeding tube, ventilator, etc.—the risk of being admitted to an intensive care unit (ICU) is 375 times greater annually than for those who do not. But coordinating the care of such children outside an acute care setting and keeping them out of the hospital can be a daunting task—particularly when there are an estimated 300 to 400 of them in Massachusetts alone. That’s why Robert Graham, MD, in Children’s Division of Critical Care Medicine, conceived the CAPE program.
Through a combination of regular home visits and consistent and coordinated follow-up care, CAPE (short for Critical Care, Anesthesia, Perioperative Extension & Home Ventilation Program) aims to help children on ventilators receive as much care at home as possible and avoid hospital and ICU admissions. Harking back to the days of satchel-toting physicians visiting sick children at home, the program represents true home visit based care, and tries to reach across the spectrum of medical specialties that might be involved in the care of ventilator-dependent children.
“We see a very mixed group of children from the standpoint of medical complexity,” Graham says. “Some come to us after an acute injury like a spinal cord injury, while others appear with one of a range of chronic or progressive conditions, such as neuromuscular diseases like muscular dystrophy. The common thread is that they rely on some kind of intensive respiratory support.
“These children’s respiratory needs are not their primary problem,” he adds, “but if they are not addressed in a coordinated manner, they can escalate to the point where the child winds up in the ICU.” The level of care provided by CAPE is tailored to the individual child’s needs. Graham or Lauren Perlman, a respiratory therapist and Graham’s partner in CAPE, see all children enrolled in the program within the first week of discharge, sometimes within the first 24 hours in order to ensure that the equipment at the home is set up properly.
Depending on the long-term treatment goals and needs, they see some children on?a monthly basis—some every six months. During these visits, Graham or Perlman carry out a number of tasks, some regularly and some as needed, including a basic physical exam or assessment of the child’s pulmonary function. They check the home environment and the child’s equipment for safety, make any necessary equipment adjustments, address any acute illnesses or distress the child might be experiencing and discuss the child’s care plan with the family. They also have coordination discussions with the child’s other healthcare providers, such as home nurses and local schooling or education providers.??Should a CAPE child require admission to the ICU, Graham and Perlman work with the child’s in-hospital care team to facilitate their discharge to home care or a lower-intensity rehabilitation setting as soon as is safe.
Graham and Perlman spent 60 days on the road in 2010, making 322 visits to 171 children in all six New England states. The work puts miles on the car, but it is paying off. Graham estimates that by seeing children at home and keeping them out of the ICU, CAPE has eliminated nearly $1 million in charges over the past two years.
“We do a lot of triaging over the phone as well, which is great,” Graham notes. “If I can talk to families and recommend the proper adjustments to the equipment, then we’ve just eliminated another emergency department visit.”?That outcome—avoiding emergency care when possible—has led Graham to try to expand the program, both virtually and physically. “We’ve started to look into developing a telemedicine component for CAPE,” he adds. “If we could launch some level of remote monitoring and care, we might be able to eliminate the need for some of our visits and maybe even further reduce the number of emergency department trips.” Graham and David Casavant, MD, another critical care specialist from Children’s, recently received a grant from the hospital’s Innovation Acceleration Program to add telemedicine capabilities to CAPE. The Provider-Payor Quality Initiative has also given Graham funds to add a social worker and a nurse practitioner to the team.
What the medical costs don’t reflect are the other costs families bear if their child is frequently in the hospital or ICU. “These families effectively end up living here,” says Graham. “They incur huge costs from lost time at work, travel, parking, food, and so on. We are just as concerned about the families’ financial well being as we are about that of the healthcare system.”
But what’s most important about the program is that the in-home care Graham and his team provide can be truly life saving. “During a recent home visit one of my patients, a girl with congenital dwarfism, started going into arrest,” he says. “Her lungs just couldn’t expand enough, even with the ventilator. We resuscitated her in the home and stayed with her in the ambulance to the emergency room. It saved her life.”