Article from the Boston Globe’s On Call Magazine, September 2005
By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting
“As patients, we give health providers permission to poke, probe, and otherwise do things to our bodies that we don’t let anyone else do,” says Mark Hochhauser, PhD, a psychologist and nationally known readability expert based in Minnesota. In order to give their consent, patients first have to understand what it is they’re being asked to do, and that means wading through a virtual swamp of legalese and medical jargon. Patients are routinely asked to sign informed-consent documents, create healthcare proxies and advance directives, read and attest to their understanding of HIPAA materials, or deal with a number of other medical-legal documents. Although the documents are there to protect both the patient and the provider, patients often find medical-legal information confusing, complicated, and overwhelming. This should be no surprise given the complexity of the content and unfamiliarity of the wording. Adding to the difficulty is the fact that most medical-legal documents seem to be written by committees of administrators, providers, attorneys, and legislators who seem to have never heard of plain language.
As a health professional, you are often in the position of having to explain these documents to patients and their families. Hochhauser acknowledges that explaining medical-legal information can be difficult. But he says it is essential, nonetheless. While the process may sometimes seem like a necessary formality before the “real” work of healthcare can start, for patients, medical-legal information is clearly connected to their sense of dignity, respect, and the right to make informed choices.
Hochhauser says it’s important for healthcare providers to be aware of their own experiences as a patient. For instance, he talks about a time when he was just minutes away from having a routine colonoscopy. That’s when his physician asked him to sign an informed-consent document. Since he was already in a hospital gown, on a gurney, prepped, and premedicated, he felt he didn’t have much choice. So he signed it, although he did not feel informed. On the other hand, his experience was much different when he was about to have a complicated dental procedure. The dentist started the consent procedure at the first meeting, talking with him, not at him, and clearly explaining everything. He even drew pictures of Hochhauser’s tooth and put digital photos on a television screen.
“The dentist took me step by step through the consent form. Of course, I signed it,” says Hochhauser. “This was probably the best informed-consent procedure I have ever gone through. While the information was routine for the dentist, it was all new to me.”
Based on his professional as well as personal experiences, Hochhauser shares strategies below that health professionals can use to more clearly explain medical-legal information to their patients.
Remember that patients may be hearing this information for the first time. The purpose of informed consent is twofold: to inform the patient about a medical procedure and to obtain legal consent for the provider to perform it. When providers do the same procedure hundreds or thousands of times, it can be easy to forget what this experience is like for first-time patients.
Informed-consent discussions should be much more than just formalities, says Hochhauser. This is a time to not only talk about the technical side of the upcoming procedure but also the patient’s feelings about it. While providers may be concerned that this kind of discussion takes extra time, Hochhauser urges them to consider the additional costs (time, energy, and potential legal expenses) when patients later say that a medical intervention was not adequately explained.
Find out what patients think of the experience. Hochhauser says there are few if any studies about the informed-consent process. A lot can be gained, he says, from asking patients about their perspective and reviewing what the patients have to say. One way to do this is through a patient advisory council or comparable forum in a healthcare facility. Hochhauser suggests the council can schedule a discussion about how informed consent and other medical-legal matters are communicated. This discussion shouldn’t focus only on what legal facts need to be explained, but also on how they are explained. Certainly, Hochhauser’s colonoscopy doctor could have learned a lot from his patient in this regard.
Acknowledge restrictions and obstacles that come from compliance with regulations. Sometimes, health professionals are not at liberty to interpret or explain medical-legal information. Hochhauser talks about a managed-care project he consulted on. When health-plan members (patients) called with questions about their insurance benefits, the staff person was only allowed to read from the member handbook and not interpret coverage.
In cases like this, when health professionals cannot use other words, they should at least acknowledge the situation and then refer patients to an outside expert or organization that can help. In reality, however, Hochhauser thinks that patients may be so frustrated by this time that they quit tying to get their health and legal questions answered.
Designate an in-house expert. Some medical-legal matters are extremely complicated. HIPAA regulations, for example, are more than 100 pages long. Hochhauser recommends that healthcare organizations designate at least one in-house “expert” who is trained to explain the information clearly. This might be a patient advocate, ombudsperson, or HIPAA compliance officer — not necessarily a clinician.
A trained person can address technical as well as emotional aspects of medical-legal information. With HIPAA, for example, a patient may have strong feelings about privacy and the role of the government. Sometimes, conversations like these need to go outside the organization to the U.S. Office for Civil Rights.
Provide a “layered notice.” Many medical-legal documents are extremely hard for the average layperson to comprehend given the volume of unfamiliar words and references to supplemental documents or rulings. Organizations can often help by providing a layered notice. Written in plain language, this is a brief (one- or two-page) summary of key points that is stapled to the official legal notice. Hochhauser recommends that organizations begin by looking at plain-language templates and summaries already available on legal, health-association, and government Web sites.
As patients, consider going beyond approved forms. Healthcare proxies, living wills, and other advance directives have huge implications in patients’ lives. Hochhauser suggests that patients not just rely on the medical-legal materials that health organizations provide.
Hochhauser suggests that patients (and providers, as patients) consider supplementing medical-legal information with other information of personal importance. For example, the Five Wishes form (see “Ways to Learn More”) can be added to more traditional advance directives. This way, patients are not only in control of their choices but also have an additional way to clearly explain their decisions to others.
A September 2004 GAO report about HIPAA, “First Year Experiences Under the Federal Privacy Rule,” (GAO-04-965) states that: “HHS … agreed that notices or privacy practices may appear too long and complicated and that consumers may not be closely reading their notices.” In response, HHS created two easy-to-read consumer fact sheets:
- “Privacy and Your Health Information”
- “Your Health Information Privacy Rights”
Ways to Learn More
Mark Hochhauser, PhD, is a nationally known readability expert.
- Five Wishes is an easy-to-use legal document that lets people plan in advance for how they want to be cared for in case of serious illness.
- Hochhauser, M. “Risk Communication: Consent Delayed Is Consent Denied.” Update: Food & Drug Law Institute, 2004, 5, 22-24. This article is based on an e-letter to BMJ (British Medical Journal): Hochhauser, M. Risk Communication: Consent Delayed Is Consent Denied. October 20, 2003.
- Osborne, H. & Hochhauser, M. (1999) “Readability and Comprehension of the Introduction to the Massachusetts Health Care Proxy.” Hospital Topics, 77(4), 4-6.