Pediatric residents train to respect family’s role
Pediatric residents train to respect family’s role
Successful program has five-year track record
Ask the family of a child ill with a life-threatening disease or chronic health problem what they most want from their physicians, and most would say understanding and information. It seems that parents of those children have a great deal of difficulty linking up with community services, support groups, and medical information they can readily understand.
That was the experience Maggie Hoffman had with her child. But rather than let the issue die, she and others who had similar experiences started Project DOCC, a pediatric residency program that in five years has trained some 300 physicians at 12 hospitals in the United States and Australia. Hoffman says that the founders of the program believe that special health care needs create medical, education, financial, and social issues within a family that physicians in the past have either been ignorant of or unconcerned with. Project DOCC is a way to get them to understand the impact of disease on the whole patient, including the family.
The program was implemented at North Shore University Hospital in Manhasset, NY, in 1994. It has since been replicated at other universities, and the United Hospital Fund in New York City wants to make it part of the 22 teaching programs that exist in the five boroughs of the city.
The fund has awarded Project DOCC nearly $350,000 to fund pilot programs, independent curriculum evaluations, and further expansion of the program.
The five-hour curriculum includes a "Grand Rounds" panel presentation featuring parents, family members of patients, and health care professionals; a home visit with a patient and his or her family; and a parent interview. The Association of American Medical Colleges recently cited Project DOCC as a community learning program that has significant merit.
Learning to create real life’ treatments
Hoffman and her team have created manuals for all the people who take part in the training, including the parent-coordinator, the parent-teacher, the physician in charge, and the medical liaison (usually a social worker or nurse). They also created a resident packet that includes a list of local resources and information about children with chronic illness living at home, attending school, and going about their lives. The hope, says Hoffman, is that physicians will learn to create treatments that accommodate a patient’s "real life."
The resident packet also includes a chronic illness history that is the basis of the parent interview portion of the program. The history contains 50 questions that guide the resident through the entire life of the patient — from pregnancy or adoption to when a parent first voiced concerns about the child. It solicits information about whether doctors respected parent observations, and discussions of financial constraints and changes of treatment spurred by HMOs. It also includes questions about family dynamics and do-not-resuscitate orders.
Court decision set patient/school precedent
The parent also has a chance to discuss issues of interest to physicians and families — such as the recent Supreme Court decision requiring school districts to provide whatever nursing a child needs to participate in school. Region-specific community resources are also covered in the interview, so that a new physician gets good information on where to refer families for support.
One or two residents conduct the interview, which is done in a neutral office. "After the multisensory, stimulating experience of the home visit, the residents really benefit from a quiet opportunity to speak with a different parent about life in chronic land,’" says Hoffman.
For teaching hospitals, there really is no down side to the program, says Hoffman. "Federal guidelines for residency training have changed so that they have to do much more training in the community. We give them five hours for free."
The only requirement is that the team of liaisons attend a two-day training conference. Project DOCC also encourages the hospitals that participate to pay every parent-teacher an annual stipend of $3,500 for 15 residents.
The program seems to work. Hoffman has seen physicians who went through the first training five years ago in practice and how they show concern not just for the patient, but for the entire family. She also believes that the training doesn’t just impact how the physician treats the chronically ill patient, but all of his or her patients. "From my own series of pediatricians, I can see that they understand that a speech delay can have a profound impact on a family. They don’t have to have a cancer diagnosis to have it hit hard. And I know that this is because of the exposure these doctors have had to Project DOCC."
There is also evidence that parents and families are more compliant with treatments when they buy into them, she adds. To do that, the family needs to understand the problem and the treatment, and feel some degree of respect from the practitioner. "When a doctor says to a family, This is a PRN medicine. If you see nasal flaring and arm stiffening, that is a seizure and you should use the medicine,’ the physician isn’t just educating the parents, but saying that he values them enough to allow them to medicate their child."
Physicians who go through the program are relieved of some of the work they might otherwise have had to do, says Hoffman. "If that physician can hook a family into community resources, the patient may not show up in the emergency room. If you can hook that family up with good education, they may catch a sign or symptom before it gets serious. If you hook that patient up to home care, you can talk to a nurse or an aide and actually interact with the family less often than before. And, if you can hook a family up to all the support they need, you will have fewer calls from schools about disciplinary problems with siblings."
In short, Hoffman says, doctors who work like this have more time to treat more patients.
Changing physicians’ behavior
While it would be nice to see the learning trickle "up" from the residents to other physicians, Hoffman acknowledges that the reality is that physicians in their own private office in a suburb who are in the hospital only to make rounds won’t change their behavior. "But I know that when a physician comes to our grand rounds presentation, they go home with information about us and start passing it out to their patients. Even if they don’t see the value in the program as a whole, they see the value in putting patients in touch with other resources."
Currently, the program is used for resident training and as a continuing education (CE) program for nurses, social workers, and other allied health professionals. Research at Emory University in Atlanta on the efficacy of Project DOCC as a training method was just completed, and results are anticipated in the first quarter next year. If it turns out as positively as Hoffman believes, it is hoped that the program can also count for CE credits for physicians.
"This is why physicians get into the business," Hoffman says. "They are here to care about patients and their families, and the best way to do that is to recognize that the doctor is a very small part of the family’s life. The imperative is to put them in touch with resources to sustain them. Don’t think that your job is to keep people from dying. You have to help them enjoy life and thrive to the best of their ability or potential."
Hoffman understands that she is asking medical schools, teaching hospitals, and physicians to fundamentally change the way they think about medicine, that they have to realize there is more to it than the drugs and technology. "But right now, they don’t have the tools to understand and deal with this. That’s what this is all about. We want to teach them how to practice in this new reality."
Cathy A. Stevens, MD, associate professor of pediatrics, has overseen Project DOCC at TC Thompson Children’s Hospital in Chattanooga, TN, for over a year (for more on her experience with the program, see related story, p. 124). Stevens agrees with Hoffman that physicians need to learn a different way of caring for patients and their families.
"It sounds so intuitive that you wonder why we haven’t done something like this before," says Stevens. "But physicians just haven’t been taught to be interactive and supportive of patients and their families, to be patient advocates, and to understand what the family dynamics are. We know about new drugs and new treatments, but we haven’t learned how to step into their shoes and understand what else is going on in their lives. We have to start focusing on family issues, not just the medical ones."
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