Being a prepared patient means taking on some of the jobs — big and small — that are necessary for staying healthy and coping will illness. Just like with any other job, it helps to have the job description clearly laid out before you start work. Your doctor may be expecting you to do certain tasks — from filling prescriptions to changing your sleep or diet — that can help you make the most of your care. But what is the best way to know what your responsibilities might be, and how can you know what your providers will be responsible for in return?
Consider creating a pact or shared care plan — a statement of shared responsibility for your care between you and your physicians. A pact 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 as part of a patient's treatment. The understanding can be very general; 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.
But whether the treatment is for asthma or Alzheimer's disease, today's patients are expected to become more active participants in their own care. In some cases, a new generation of physicians has moved so far away from the old model of "doctor knows best" that their patients may feel they are making decisions entirely on their own.
In his work with patient focus groups, Ed Wagner, M.D., director of the MacColl Institute for Healthcare Innovation, found that patients were "troubled by the chaos and uncertainty in care," from when to take their medicines to 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.
A pact can also spell out exactly how each responsibility contributes to better health, and how skipping these jobs can jeopardize treatment. "They're 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."
Moreover, such an understanding can also ensure that patients and physicians are on the same page when it comes to treatment goals. 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. "We write up a series of goals to work toward in therapy," she said. "And once treatment begins, we regularly update the plan together. I get ratings every week, or however often their appointments are, from parents and kids about how they are feeling and how they are working toward our goals."
If your physician doesn't suggest a pact or similar shared care plan, you can start by asking her to "establish the goals of treatment," Wagner said. "It's not something that is often coherently discussed. Generally, patients leave with a need to do this and this, but not be clear as to why."
If you have diabetes, for instance, you can establish that your goals are to keep your blood pressure and blood sugar readings at a certain level, while asking your doctor to spell out the specific tasks that can help you with these readings. On the doctor's side of the plan, "he may agree to prescribe certain medications and refer you to different specialists if necessary," Wagner suggested.
For patients like Jeff Gavin, who is dealing with leukemia and everything that goes with it, knowing who to call for after-hours care and how to pay the bill are as important as knowing the steps in his chemotherapy routine. Shared care plans that outline these administrative details are appreciated by patients like Gavin. His doctors met him with "a whole packet of information and a whole system set up" to guide him through his financial responsibilities, including what portion of his treatment would be covered by insurance, which office handled payment plans and who to call if he needed to skip a payment.
In the shared care plan from United Outstanding Physicians, said Ibrahim, patients and physicians have separate lists of responsibilities that must be reviewed and agreed to at the start of treatment. "The patient is asked to read this document, or it is read to her or him by the physician's staff as they enroll in the program, and a copy is placed in their medical record." Ideally, he said, the document is reviewed each year so that all the participants remember their responsibilities.
Gavin doesn't have a written treatment plan with his oncologist, mostly "because we don't know what's going to happen the next week," he joked. But Wetherby and Wagner recommend a written plan, so that patients and physicians can consult the agreement together. Having the plan in an electronic form, said Wagner, "makes it transportable so that if a patient needs to see another provider, that provider can be informed of the plan."
Written plans give patients and physicians a place to start when a treatment isn't working out, said Wetherby. "If you don't feel like you're getting much improvement, maybe you've forgot what our goals were at the beginning, or maybe our goals should be changing."
A pact "shouldn't place contingencies on the treatment," said Wagner. For instance, the agreement shouldn't give physicians the right to refuse treatment if the patient isn't living up to her end of the shared responsibilities.
If you're finding it hard to bring up the idea of a pact, or if you think your doctor might be resistant, "the best way to deal with it is the same way you would deal with any human being," said Wagner. "Both parties should be saying, 'here's what I need' not 'here's what I'd like you to do.'"
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