Jeff Gavin's diagnosis of leukemia last year threw him into a new world. Suddenly the father of five had to keep track of a bevy of new medicines and maintain a complicated series of appointments and hospital visits for chemotherapy.
Now, Gavin and his oncologist have worked out a treatment plan that helps both of them stay on top of it all. "It's been a huge change from when we started," Gavin said. "But I can't [afford to] have a bad day. We have the plan in front of us, and we will tweak it as we go along."
Being a prepared patient means taking on some of the jobs necessary for staying healthy and coping with illness—and it helps to have the job description clearly laid out.
Consider a pact—a statement of shared responsibility for your care between you and your physicians. Such an understanding can be a guide to treatment goals that you and your doctors agree on, and it can set the rules of engagement as you pursue your treatment.
Don't think of it as a legally binding document, or even anything as rigid as a contract. For most patients, a pact can be a useful map for how you interact with your little corner of the health care world.
Why a Pact?
Pacts are usually part of a shared treatment plan, in which patients and physicians agree to perform certain duties. Patients might agree, for example, to update their doctors on any changes in their non-prescription medicines since the last visit. Physicians might agree to ask patients about any side effects or new symptoms at each visit.
Other shared care agreements may be more specific, particularly in cases where the doctor is prescribing medications such as painkillers where patients may become addicted or illegally resell the drugs. These agreements are usually one-sided in that they discuss only the patient's responsibilities.
Ed Wagner, M.D., director of the MacColl Institute for Healthcare Innovation, found that patients in focus groups were "troubled by the chaos and uncertainty in care," such as not knowing which doctor to call in a night emergency. Shared care planning can help patients understand their new responsibilities, while letting them know they are not alone in their decisions, he said.
Pacts are "based on the premise that patients leave the office half the time confused about what happened and what they have to do," Wagner said. "Anything we can do to change that is likely to improve care and outcomes."
A recent study of mental health treatments provided to adolescents found that the teenagers, their parents and their therapists disagreed about what they hoped would be the outcome of the treatment. Without that shared goal, the teens were at risk of dropping out of the treatment or receiving therapy that was ineffective, the researchers suggested.
The "bottom line" of a patient-centered share care plan, said Altaf Ibrahim, director of clinical improvement at the Blue Cross Blue Shield program United Outstanding Physicians, is to have patients stick to their doctor's advice, better control their symptoms and avoid unnecessary hospitalizations. But setting up a good pact takes a little work.
Building the Care Plan Together
When neuropsychologist Mary Wetherby takes on a new patient with ADHD, she starts with "pages and pages" of test results, treatment options and specific recommendations. "If there's a decision that they have to make, we talk about it," she said. Those decisions form the basis of a shared care plan for Wetherby and her patients and their families.