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An Etiquette Book for Patients and Caregivers

One small step for patient-centered care, and one big step for patient engagement, would be to set out clearly how patients and the village of professionals serving them will communicate.

As far as my chemo nurse Olga* is concerned, I can do nothing right.

She scolded me for sending an e-mail when she thought I should have called, and vice versa. She scolded me for going home before my next appointment was scheduled. She scolded me for asking to speak to her personally instead of whichever nurse was available. She scolded me for calling my oncologist directly. She scolded me for asking whether my clinical information and questions are shared between my oncologist and the staff of the chemo suite. I could go on …

“Funny,” I think to myself. “If she had told me the basic ground rules of interacting with her and her colleagues, I would have been happy to follow them. Otherwise, how am I supposed to know — guess?”

While my recent diagnosis of stomach cancer last fall introduced me to many new doctors and their practices, most were one-shot consultations. Other than making sure the test results they ordered and their recommendations found their way to the right physicians (my responsibility in the absence of an interoperable health record), it didn’t really matter how I communicated with them over time.

But when you start chemotherapy or have a heart attack, brain injury, stroke or a serious chronic condition, you sign on to a long-term relationship with a whole crew of people — receptionists, various types of nurses, aides, physical therapists, educators, coaches, phlebotomists, pharmacists and doctors — that is likely to require a lot of back-and-forth. Chances are that these professionals have figured out ways to work together pretty efficiently. The problem is that most of them don’t let us in on the action; they rarely provide us with (ahem) “rules of engagement” that would tell us how to work most effectively with them.

And so we are left to guess, and when we guess wrong, sometimes we are scolded. This, of course, leaves us frustrated … sometimes even mildly rebellious.

In interviews that the Center for Advancing Health conducted about receiving care after a serious diagnosis, again and again patients and families raised their bewilderment (and annoyance) about the difficulty of learning how to communicate with their specialists. And the same was heard from people discussing their regular providers. People can’t figure out how to get their test results. They are puzzled about whom to call after hours or on weekends. They are baffled about whom they should talk to regarding billing and insurance problems. They are flummoxed by the new and unfamiliar demands placed on them by different sources of continuing care: rehabilitation hospitals, cardiac rehab, oncology suites, neurologists and other specialists and for some, unfamiliar primary care medical homes.

The confusion of patients and families will not in itself drive any widespread change in the way care is delivered. But our endless stream of identical questions to busy professionals surely interferes with their efficiency. And with increasing calls for the competent engagement of patients and families, making explicit the ways we can most effectively work with a team of professionals seems like a modest, feasible step for primary and specialty care providers to take. Doing so is one aspect of making our care truly patient- and family-centered that doesn’t require a high-tech solution or federal policy nudge.

So consider, then: A couple of years ago, in response to interview findings, CFAH developed, with Susan Edgman-Levitan and her colleagues at Massachusetts General Hospital, a model guide for patients and caregivers that identified the basic information people need to interact over time with a given medical practice or setting. The model includes items such as the names of the care team members; a description of who is responsible for responding to which concerns, for instance, questions about symptoms, appointments, insurance and phone numbers; how to get prescription refills; procedures for after-hours and emergency care; access to health records; the process for reporting on tests; and even information about parking and public transportation.

Recently, a group of primary care practices decided they would pilot test this model. Weeks later they abandoned the effort. Why? Because the clinicians within the practices couldn’t agree on their office hours.


(*Not her real name)

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