“I come from the pediatric world, particularly the world of kids with chronic conditions and special health needs,” says Polly Arango, co-founder of Family Voices, a grass-roots organization in Albuquerque, New Mexico, USA, for children with special health needs. “In that community, there’s a great recognition that children come attached to a family. I believe that’s also the case in the adult world: Most adults also come attached to another adult — a spouse, a neighbor, or someone else who helps with their care.”

In December 2003, Arango and several New Mexico (USA) health care professionals — Charlie Alfero, CEO of Hidalgo Medical Services; Lance Chilton, a pediatrician at Lovelace Medical Center; Ben Daitz, a family physician and faculty member at the University of New Mexico School of Medicine; and Nikki Zeuner, director of The Wellness Coalition — joined together to highlight the advantages of family-centered care at a presentation at IHI’s annual National Forum. Using case scenarios, attendees investigated family-centered care perspectives around specific clinical issues by breaking into small groups to play out the roles of the family, clinicians, or administrators.

It Takes A Partnership

The family is usually a child’s around-the-clock health care system, Arango notes. Realizing that this also holds true for adults can provide major payoffs in life quality and health care costs, she says, although “you have to change your approach, and at some level your culture.”

The key, Arango emphasizes, is to build a partnership between the patient, the family, and clinicians. This requires trust, which takes time to build, Arango says. It also requires “absolutely transparent sharing of information; it’s a two-way street.” Physicians must take the time to explain what’s happening, and to point out when the medical situation is clear-cut and when it is not. Patients, in turn, must be forthright in talking about what’s really happening — for instance, if a patient has diabetes but is not following the proper diet, this needs to be discussed with the physician. With this kind of conversation, “we’re talking about some intense moments,” Arango says wryly.

“The aim is to have the family be the center,” empowered to handle as much as reasonably possible, says pediatrician Chilton. For a pediatrician, that means “assessing where a family is and then working to increase their confidence and ability to work for and advocate for the child.” “Lots of people, physicians included, tend to talk more than they listen,” Chilton adds. “You must listen to where the family is and what they really want — what their hidden agendas might be.”

“Working this way gives doctors great satisfaction and is in many ways more efficient and cost-effective,” Arango says.

Pediatric departments at a number of medical schools now emphasize a family-centered approach, with family members aiding in teaching, or medical students “adopting” a family, Arango says. The National Center of Medical Home Initiatives for Children with Special Needs, set up by the American Academy of Pediatrics, offers another example that emphasizes family-centered medicine.

Importantly, the approach also can save substantially on costs, Arango points out. For instance, “if the parents of a child with a seizure disorder are comfortable calling their pediatrician rather than racing to the emergency room, you’ve saved the health care industry a bunch of bucks.”

Assemble the Care Team Up Front

"Pain is significantly undertreated," says Daitz of the University of New Mexico. His community health center aids patients suffering from chronic pain by bringing together a complete medical team for consultation when care begins. Traditionally, Daitz explains, a patient suffering with chronic pain typically goes first to a primary care doctor, then to an orthopedist, then physical and occupational therapists. “By then, they’re a year into it and they're depressed, so they go to psychiatrist, and then a rehabilitation MD.”

Instead, his clinic aims to “front-end load the consultative care.” Daitz says, “We assemble a team of practitioners up front, for a kind of group physical exam. We spend at least an hour, with all of us asking questions. We make some decisions with the patient and do it all at once. It’s the best medical experience I've ever had. Patients uniformly said, ‘You're the first people that have really talked to us.’ Often they didn't want to leave."

The program was funded by a grant from Johnson & Johnson. Daitz would like to continue the work, persuading a private or university practice to do long-term formal study of the approach’s results and cost-effectiveness.

Integrated Care for Health and Social Issues

Covering two rural counties, Hidalgo Medical Services helps many low-income patients with no medical insurance. “A patient might have diabetes and no money,” says CEO Alfero. “Or they might have chronic respiratory problems and live in a car.”

The community health center aims to offer integrated care for both health and social issues. “We try to respond to the whole person, and not just the symptom,” says Alfero. “We have staff that help people navigate the system and get what they need.” That might include free medication, education on diabetes (with a tour of a grocery store) or other health issues, and help with housing and education.

And Hidalgo Medical Services literally reaches out into the community and those who need it. In one recent example, a patient with no money refused to see a doctor although he had pus coming out of his ear. A health worker visited his home and took him to an emergency room where a large infected tumor was successfully removed from his brain. “That’s a pretty powerful story,” Alfero says. “That’s what the value is.”