On Call Magazine
May, 2007

By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting

Health communication can be difficult for everyone. Healthcare providers and patients alike may struggle to communicate clearly, and both can walk away from conversations unsure about whether they understand what was said or were understood themselves.

The ESRD (End Stage Renal Disease) Network 13, based in Oklahoma City, Oklahoma, is working to improve this situation by offering three pairs of communication workshops in their service area (Arkansas, Louisiana, and Oklahoma). Each includes one session for patients and caregivers, and another for healthcare providers and administrators. The patients are dealing with kidney failure and undergoing dialysis; the providers work at treatment facilities for dialysis patients. I have had the privilege of speaking at all of these workshops.

To better understand the communication concerns of both providers and patients, I recently took part in a conference call with several members of the ESRD staff. The participants included Shelly Valadez, RN, BS (quality improvement nurse), Jacki Winn (outreach coordinator), and Carolyn Wilson (data support), who is also a dialysis patient.

Valadez, Winn, and Wilson agree that once a patient needs dialysis, things change forever for that patient. Without a kidney transplant, patients will need some form of ongoing dialysis. Most start with hemodialysis, a four-hour treatment three days a week given at a treatment facility. Some later opt for peritoneal dialysis, which they do everyday at home. Regardless of which treatment patients decide to have, they will work closely with healthcare providers for the rest of their lives. In the conference call, we focused on ways that patients and providers can work together to improve health communication at all phases of treatment and care.

Start From the Beginning

Wilson says that when patients learn they need dialysis, some incorrectly assume they need just one treatment. Conversely, providers may assume patients know they need dialysis for the rest of their life or until they can have a kidney transplant. Rather than assuming what patients already know, Valadez and Winn say providers should start important conversations about new diagnoses, medications, or procedures with the basics. That way they can ensure everyone is on the same page.

Teach at a Pace People Can Learn

There is no benefit in providing too much information too fast. Patients are often acutely ill when they start dialysis. They also are likely to be flooded with new information about procedures, providers, and routines. Valadez, Winn, and Wilson agree there is only a limited amount of information that patients can absorb in the first few weeks.

They recommend that providers resist the temptation to assume everything the patient hears is going to be absorbed. They also say providers should be prepared to revisit important topics weeks or even months later.

Review Information Together

Good health communication involves more than just giving patients brochures to read. Providers need to help patients know why these materials are worth paying attention to. Wilson estimates that in her 13 years of dialysis treatment, she has accumulated at least two big boxes of papers, notebooks, pamphlets, and forms — all of which remain unread. When asked why, she says, “I haven’t gotten to them yet.” The real reason, all three say, may be that no one has yet made a compelling case why she should read them.

Provide Clear, Specific Instructions

Patients, even those in treatment for many years, may not always understand what certain medical terms mean, or how to follow through with lifestyle recommendations. One example that Valadez cites is “eat protein.” She points out that there is no “protein aisle” in a grocery store. Providers, she says, can be more specific by telling patients to eat more eggs, beans, soy, and meat.

Help Patients Understand Why You Need Information

At all points of care, patients are asked to complete health histories and other forms. Wilson says she is often leery about filling out these forms. A common fear is that a “wrong” answer could lead to additional tests or shots. She and Winn both say it helps when providers explain why they need such detailed information and how this information will affect their treatment.

Help Patients Ask Questions

At a recent patient/caregiver session, the topic of why people are reluctant to ask questions came up. Patients said they are concerned that asking too many questions may result in longer appointments. They also worried that providers are too busy to answer them. The idea that providers should encourage patients to write down questions before an appointment and bring someone with them when there are important matters to discuss met with approval from the participants. One advantage of bringing a spouse, family member, or close friend is that this person may hear things the patient misses or remember to ask questions the patient forgets.

Confirm Understanding

Valadez, Winn, and Wilson all say this principle goes two ways. Patients need to understand what providers are explaining or asking them to do. Likewise, providers need to understand what patients are saying. For example, when a patient says she has a “poor appetite,” the provider should confirm whether this means she is eating less than three meals each day, or just having smaller portions, or has no interest in food at all.

Good communication is important for everyone. As Wilson so eloquently states, “Once you open the door to learning, patients will take it from there.”

[EDITOR’S NOTE: ESRD Network 13 has asked us to include the following disclaimer with Helen’s column in this issue. “While some information contained in this article is a direct result of the Health Care Quality Improvement Program initiated by the Centers for Medicare & Medicaid Services, Department of Health and Human Services under contract number HHSM-500-2006-NW13C, its publication does not necessarily reflect the views or policies of the Department of Health and Human Services. The author assumes full responsibility for the accuracy and completeness of the ideas presented.”]