PUBLIC HEALTH
April 15, 2009

Patients' Bill of Rights: All That's Missing is the Sanity Clause

Twenty-three states offer patient bill of rights (PROR) statutes, yet almost no one can understand them. The documents raise incomprehensibility to...

What exactly is a patient bill of rights? While you'd probably have a better understanding if you read one, a recently published study says you'd better have at least college-level reading skills to even attempt this.

What are your rights where you live? ... Few people seem to know. That's probably because patients' bills of rights read like cell phone contracts.

Patients' rights statutes are designed to promote the ethical and humane treatment of hospital patients. The first one was issued in 1973 by the American Hospital Association. It contained 12 themes, including the right to confidentiality and the right to refuse treatment. Today, 23 states have patients' bill of rights statutes that cover the general patient population. These statutes are laws, not feel-good documents. What are your rights where you live? And what are your remedies if these rights are violated? Few people seem to know. That's probably because patients' bills of rights read like cell phone contracts.

Michael Paasche-Orlow is a medical doctor and holds a Masters of Public Health. He's also an assistant professor at Boston University's School of Medicine. The research team he headed analyzed 23 state and 240 individual hospital patients' bills of rights (PBORs). Using a software program called Prose, the team found that the average readability of PBORs is that of a second-year college level. The reading level of the average American adult is roughly that of an eighth grader.

And it is not necessarily the content that makes the PBOR documents difficult to read. Even simple ideas become complex. The phrase, "Let you choose whether to accept or refuse treatment," becomes "The patient has the right to make decisions about the plan of care prior to and during the course of treatment and refuse a recommended treatment or plan of care to the extent permitted by law and hospital policy and to be informed of the medical consequences of this action. In case of such refusal, the patient is entitled to other appropriate care and services that the hospital provides or be transferred to another hospital. The hospital should notify patients of any policy that might affect patient choice within the institution."

One thing is clear: a document like this does not help communicate information to patients.

On average, only seven of the 12 themes outlined in the original PBOR are covered in the 263 PBORs the researchers studied. The most frequent omission is the right to "be informed of business relationships that influence care" present in only 17% of the state documents and 40% of the hospital documents. Ironically, one of the original themes is the right to "obtain current and understandable information." This is covered in about 90% of all PBORs. They just forgot about the understandable part.

It's easy to make fun of all this, but what's the solution? How can PBORs be written more simply? Who is and should be in charge here? To Paasche-Orlow, one answer is clear: "Legislatures should not be drafting documents for patients."

The results of the study were published in the online edition of Journal of Internal Medicine, February 3, 2009.
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