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Patients' Bill of Rights Too Tough to Read
Date:3/27/2009

Analysis shows most documents require reading skills beyond those of general population

FRIDAY, March 27 (HealthDay News) -- This one should come as no surprise to most consumers: A patient's bill of rights, the document that outlines your expectations for medical care, is usually written in language so dense and crammed with legalese that you need college-level reading skills to understand it.

That's the crux of a new analysis, which also points out that the average American reads at an eighth-grade level.

The problem is highlighted in the report, recently published by the Journal of General Internal Medicine, with two striking examples:

For the Right to Know Names of Providers, there is this: "Upon request, to obtain from the facility in charge of his care the name and specialty, if any, of the physician or other person responsible for his care or the coordination of his care."

Simply translated into an eighth-grade reading level, this should say: "Tell you the names and roles of the people caring for you."

For the Right to See Bill, there is this: "Every such patient or resident of said facility in which billing for service is applicable to such patient or resident, upon reasonable request, shall receive from a person designated by the facility an itemized bill reflecting laboratory charges, pharmaceutical charges, and third-party credits and shall be allowed to examine an explanation of said bill regardless of the source of payment. This information shall also be made available to the patient's attending physician."

And, at eighth-grade level, it could simply say: "Show you your bill and explain it to you, no matter how it is paid."

"This is a significant problem," said J. Douglas Storey, associate director of Communication Science & Research at The Health Communication Partnership, part of Johns Hopkins Bloomberg School of Public Health in Baltimore. "It looks like hospitals and states are not taking [reading level] into account [in patients' bill or rights], because they obviously far exceed the average reading level for most adults."

One of the problems is that there is no federal bill of rights. So, the researchers, led by Dr. Michael K. Paasche-Orlow, an associate professor of medicine at Boston University, assessed the readability of patients' bills of rights (PBOR) from across the country and compared them with the first such bill issued by the American Hospital Association in 1973. The AHA bill of rights included 12 themes -- among them, the right to confidentiality, the right to refuse treatment and to refuse participation in research. PBORs in individual states and hospitals were examined.

And the researchers found that:

  • Statutes in 23 states and at 240 hospitals required an average of two years of college to read and understand.
  • The documents also tended to be presented only in English, although there were some exceptions.
  • They covered an average of only seven of the 12 themes presented by the AHA

"Hospitals make every effort to communicate with patients in a clear and concise manner that can be understood by all," reads a reaction statement from the American Hospital Association. "This study highlights what we have long known: There are some major issues with low health literacy in this country. Health care and the associated laws and regulations are very complicated, and often cannot easily be explained to a patient at any literacy level."

But Paasche-Orlow offered a different view. "Legislatures should not be drafting documents for patients," he said. "Lawyers have certain type of expertise, but they frequently fail when it comes to patient information."

"These concepts really can be communicated in a much simpler fashion, and really should be," added Paasche-Orlow. "In nine states, the legislators themselves wrote the language that's supposed to be used. It's ridiculous."

This complexity may be thwarting the patients' rights movement, which emerged about four decades ago, the researchers noted.

"The aspirations of this whole movement are not going to be met, including a whole host of things that require that each patient become activated, informed consumers," Paasche-Orlow said. "The implementation of this particular part of that patients' rights movement has been a failure, because patients are not activated or empowered by these documents."

In 2006, the hospital association replaced its original bill of rights with the "Patient Care Partnership," which reads at the eighth-grade level and is available in several languages.

Storey noted that, when preparing consent forms for people considering or being recruited to participate in clinical trials, his institution generally uses an eighth-grade reading level, which is common elsewhere.

More information

The American Hospital Association has more on communicating with patients.



SOURCES: Michael K. Paasche-Orlow, M.D., M.P.H., associate professor, medicine, Boston University School of Medicine, Boston; J. Douglas Storey, associate director, Communication Science & Research at The Health Communication Partnership, Johns Hopkins Bloomberg School of Public Health, Baltimore; American Hospital Association statement; February 2009 Journal of General Internal Medicine, online


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