Health Literacy For the Rest of Us

Patient in ECMO
Image via Wikipedia

Do you know your rights as a patient and consumer of health services? Last year, I began writing about The Patient’s Bill of Rights, a series of protections also known as the Consumer Bill of Rights and Responsibilities. This bill was adopted by the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998.

Its goals are to increase patient confidence in our health care system, improve patient-provider relations, and ensure that patients understand that they also play a key role in their health.

Unfortunately, much of the language of this document is written well above the reading level of the average American. No matter how good they are, no protections will help patients if they don’t first understand them.

For example:

The patient has the right to and is encouraged to obtain from doctors and other direct caregivers appropriate, current, and understandable information about diagnosis, treatment, and prognosis. Except in emergencies when the patient lacks decision-making ability and the need for treatment is urgent, the patient is entitled to the chance to discuss and request information about the specific procedures and/or treatments, the risks involved, the possible length of recuperation, and the medically reasonable alternatives and their risks and benefits. Patients have the right to know the identity of doctors, nurses, and others involved in their care, as well as when those involved are students, patients, or other trainees. The patient also has the right to know the immediate and long-term financial implications of treatment choices, insofar as they are known.

Even with a Master’s degree, I had to read this several times. It’s not written for patients, it’s written for hospital and insurance company lawyers.

Instead, how about “your doctor or specialist should talk to you about your health problems the best way to treat them. You can ask as many questions as you want until you understand the information, your choices, and how much it will cost. You also have the right to know the names and roles of anyone that cares for you in the hospital.”

Or in this passage about Access to emergency services

“If you have severe pain, an injury, or sudden illness that makes you believe that your health is in danger, you have the right to be screened and stabilized using emergency services. You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.”

It would be much easier to understand if it said “if you need emergency services because you’re sick, hurt, or in pain, you can go to any emergency room for care. Your insurance company cannot stop you from getting treated, or charge you extra because of it.”

It is inexcusable that consumers cannot understand what their rights are.

The AHA developed what they say is a “plain language” brochure called “The Patient Care Partnership.”
It is supposedly written in a more consumer-friendly style. It is also available in seven languages besides English. I took a look, and I’m not so sure about their definition of “plain.” I still get the feeling that many people, even those whose native language is English, may not fully comprehend it all.

According to an article in Health Promotion International most health information is written at or above a 10th grade reading level. However somewhere between 40-44 million Americans are functionally illiterate – most of them born in the U.S., whose first language is English.While the average American reads on roughly an 8th to 9th grade level, the National Assessment of Adult Literacy found that only 12 percent of U.S. adults had proficient health literacy. Less than half of those surveyed had even a basic skill level.

As healthcare gets more and more complex, health literacy is becoming a huge problem, impacting everything from understanding informed consent forms, to information about an illness or disease, to taking medication properly. And forget even trying to fill out an insurance form or apply for financial help.

We have an ethical obligation to make sure that everyone can understand information that affects their health. Whether the patient is a PhD or never graduated high school, it is up to all care providers and professionals to ensure that every patient “gets it.”