Pulse of Longwood takes you inside one of the nation’s largest hubs of hospitals and biomedical research.
Old-fashioned doctors’ house calls have come back to meet a modern need — taking care of a growing number of children who rely on masks, tubes, and ventilators to breathe.
As thousands of patients headed to Boston’s Longwood Medical Area one recent morning, Dr. David Casavant, a critical care doctor at Boston Children’s Hospital, set off in the opposite direction, breaking away from the medical complex to visit five patients in the comfort of their homes.
Casavant is part of a small medical squad at Children’s that visits kids and young adults who, because of acute injuries or chronic illnesses, need intensive respiratory support. Dr. Robert Graham and respiratory therapist Lauren Perlman launched the program in 2007 after noticing that these patients kept getting readmitted to the intensive care unit because they had trouble transitioning from hospital to home.
At a time when the biggest insurance payouts come from hospitalization, and patients are squeezed into shrinking office-visit time slots, house calls are rare. For Casavant, who also works in the hospital’s intensive care unit and on its pain treatment floor, getting out of the hospital offers a chance to get a fuller picture of patients’ lives.
For families, it’s a welcome break from the laborious — and risky — task of taking vulnerable children to the hospital with the equipment they need to breathe and eat.
At 11 a.m. on a recent workday, with two house calls completed, Perlman and Casavant rolled down a country road past a horse stable in Middleborough, Mass., about an hour south of Boston. Perlman parked her Honda CRV in the driveway, popped the trunk, and grabbed her version of a country doctor’s bag — black tote bag stocked with hand sanitizer, Clorox wipes, and a machine that measures patients’ breathing.
Casavant, who chose a checkered dress shirt instead of a white doctor’s coat, knocked on the door with a stethoscope around his neck. Inside, he slipped off his shoes, following the family rules.
The patient, 8-year-old Addy Stricklin, waited for them in the kitchen wearing a pink flower in her hair and a shirt that read, “Mermaid at Heart.” The newest member of the household, a 4-month-old red toy poodle named Finn, bounded up to greet the visitors. Casavant scooped him up and asked Addy: “Is he a boy or a girl?”
Addy, who usually brims with chatter, said nothing. She was feeling sick. To make her comfortable, Casavant and Perlman conducted her six-month checkup on a big blue couch in the living room. Casavant knelt beside her, checked her heart and lungs and ears, and peered with a penlight into her tracheostomy tube, which is inserted in the throat to make it easier to breathe.
A rare genetic disorder, campomelic dysplasia, gave Addy a very small stature and curved bones. Thanks to recent spinal surgery, she can walk quite well. She goes to school, accompanied by a nurse. She just got back from a trip to Disney World, where she went on lots of rides. But she faces many challenges, including hearing, eating, and breathing.
Her mom, Hannah Stricklin, took Addy to her bright pink bedroom, where she lay down beneath Minnie and Mickey Mouse and breathed through a ventilator. Her night tables gave a glimpse of how much is required for her care: ventilator, humidifier, and oxygen monitor on one side; bottles of pink liquid medicine on the other.
Charging, packing, and lugging that equipment — not to mention food, clothes, a feeding tube, and a suction tool — to Children’s and navigating the waiting room and Boston traffic can easily eat up most of the day, said Stricklin.
Instead, she was grateful to talk to the doctor beside Addy’s bed. Addy won’t eat much beyond yogurt and a few sips of juice, she told Casavant: “She doesn’t want to chew anything. She acts like she’s going to die.”
Casavant spent a full hour with the family, far longer than the 10 to 15 minutes he typically spends with a patient on the hospital’s pain treatment floor. In all, the home care team — Casavant, Perlman, Graham, a nurse practitioner, a social worker, and an administrator — tend to 300 patients through at-home visits, clinics, and round-the-clock phone calls. The program, called CAPE (Critical Care, Anesthesia, Perioperative, Extension, and Home Ventilation), makes five to 10 house calls per week.
Those calls range widely, from spacious homes like Addy’s to subsidized housing, from Cape Cod to western Massachusetts. Getting a peek inside the home lets the CAPE team check rooms for safety — and discover other risks to a patient’s health that wouldn’t be obvious at the hospital.
When Casavant first visited the home of Derek Orcutt, for example, he asked the history buff and diehard Bruins fan how he would escape in an emergency. Orcutt, now 24, has Duchenne muscular dystrophy, a rare disorder that debilitates the muscles until the heart stops. He can move only his fingers, toes, head, and shoulders.
His mother, Carol, told Casavant that the plan was to pass her son out of the window — and risk breaking a leg if need be — rather than try to navigate the narrow hallway with bulky equipment.
Casavant found a solution: He called a Boy Scout troop leader in Westwood and got the troop to install glass sliding doors and a back deck last March. Now Orcutt can roll outside on a wheelchair or even in his bed. When the doctor visited recently, Orcutt reported that he has been getting out more often now, and even spent one evening watching a meteor shower.
Orcutt’s case gives a glimpse of why more patients are living at home on breathing machines. When he was diagnosed at age 2, his family was told he wouldn’t live past 16. But modern medicine, including multiple surgeries, a tracheostomy, and a home ventilator, has enabled him to live longer, and to spend his days outside the hospital.
Medical advances have also dramatically improved survival rates for premature babies and kids born with congenital anomalies, and there has been a “change in attitude towards the use of mechanical ventilation to prolong life, especially in muscular dystrophy,” said Dr. John J. Downes, a professor emeritus at the Children’s Hospital of Philadelphia. He created a pioneering home care program for Pennsylvania kids on ventilators in 1979. At that time, he said, there were just five patients. Now there are 225 per year.
Downes estimated there are 5,000 patients under age 22 nationwide who need daily help breathing. About half have disorders of the lung, heart, or airway, and may be liberated from breathing equipment one day. The other half, who have nerve, muscle, or brain disorders, will never be able to breathe on their own, he said.
Similar home care programs have emerged across the country, including in Los Angeles and Indiana.
One of the biggest challenges is finding money to keep the programs going. In Boston, CAPE has relied on grant money and support from Children’s. Graham argued that the program saves money by preventing costly visits to the ICU, but that’s hard to prove.
He said Children’s is taking the long view that the program is worth the investment in preventive care, since if these patients land in the hospital, they tend to stay a long time. But as of now, the house calls are not reimbursed by insurance and the program is not financially sustainable, Graham said.
It doesn’t sound personally sustainable either: Graham is on call 365 days a year, 24 hours a day for these patients. He said he gets 90 after-hours pages from them per month. Graham said CAPE’s social worker is beyond capacity in her caseload, and he still gets requests every other day to take on new patients.
“I have never turned anybody down,” he said.
Our family is forever thankful for your kindness, compassion and amazing care that you all provided for our Ashleigh as she battled SMA. We are so thankful to have had such an incredible team working with us.
A HUGE Thank You to the CAPE Program ! I’m Colin Newton Aunt and we are so so grateful for you Dr.Graham and your team!
Colin is doing so many thing we never dreamed possible and just celebrated his 3 Rd Birthday.
Thank You again! I too am a child who benifited from CHMC 60 yrs ago not by the CAPE Program
But by all the cutting edge Dr’s that work at CHMC even back then.
Comments are closed.