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Don’t censor information
Question: "What should patient resource center staff do when patients come into the learning center for information, and the medical facts are grim; yet in their conversation with the patient, staff are not sure the patients understand the possible outcome of their diagnosis? We would prefer that the clinical areas, the physician or nurse, talk with the patient about this information, but because we are freestanding and anyone can come in and get the information, it poses a dilemma. Are the staff in the learning center the right people to give the patient this grim information?"
Answer: Adult patients who request health-related or medical information have a right to the information they request. The library or patient resource center staff have a responsibility to provide information, not to censor it, even when the medical facts are grim, says Rebecca Mehling, MLS, librarian at The Center for Health Information, The Ohio State University Medical Center in Columbus.
However, there are many ways to present the information. Therefore, staff at The Center for Health Information reviews the way facts are presented in several sources. "We try to locate a source where the information is presented in the best light, in a way that will not harm the emotional well-being of the patient," says Mehling.
When giving patients grim information, staff should do three things, advises Mehling. They include:
• Remind the patient that each person’s situation is different.
• Advise patients to discuss the information with their health care provider.
• Explain that medical advances occur on a daily basis.
In hospital or freestanding resource centers, it is appropriate for staff to provide information on diagnoses that have been made by competent clinicians. It is not appropriate for resource centers to give clinical interpretations of the information, says Arlen Gray, MA, family library coordinator at Children’s Healthcare of Atlanta. "Always stress that the patron needs to talk to a qualified clinical person," says Gray.
Ask the right questions
When the diagnosis is grim and the inquirer seems unaware of how serious the diagnosis might be, Gray will pause and ask the patient: "Has the doctor told you very much about this condition?" If he or she reply that the physician hasn’t told him or her very much, Gray explains that the information she is reading sounds serious. When she gives them information about the diagnosis, she also provides verbal guidelines on the interpretation of the information. These guidelines include:
• The information may be written for a worst-case scenario, so patients should not take it seriously until they talk with their doctor.
• The information is about a diagnosis, not about their personal condition. There may be variations in individual cases. For example, "this article describes Graves’ disease in general, but not your case of Graves’ disease."
• Nothing from a book or an Internet source is a blueprint of the future. It will not tell you what you are going to experience.
"I always ask what the care provider has explained to them to see how much they understand," says Carol Appler, RN, BSN, MA, CHES, program manager for the hospital-based Health and Wellness center at Ireland Army Community Hospital in Fort Knox, KY. If there is confusion, she advises them to discuss further issues with their provider explaining that they may not fully understand the diagnosis. (For more information about ensuring patients are asking for appropriate materials based on their diagnosis, see article on p. 68.)
Appler talks with the patient about how to prepare for the visit with the physician so they won’t forget to ask questions. On some occasions, she contacts the provider so that they are aware of the patient’s lack of understanding. Also, she works directly for a physician who provides guidance when she needs it. "It is not our function to inform people of the possible dire outlooks they may be facing, and we are fortunate to be located in a hospital setting so that a wide variety of support services are available," says Appler.
When information is grim, helping patients formulate questions to ask their physician is the best response, agrees Candace Stiklorius, MSN, RNC, coordinator of the patient & family education center at the Hospital of the University of Pennsylvania in Philadelphia. Questions might include: "What is the five-year survival rate for this kind of cancer?"
Staff need to ask questions that clarify what patients already know and what they really want to know. "Even if the patient or family wants to know and the news is grim, their response may be very difficult for center staff to deal with," says Stiklorius.
It’s important to find out what patients want to know because even though the outlook may be dire, they may not be asking for all the facts, says Magdalyn Patyk, MS, RN, coordinator of patient education, nursing development at Northwestern Memorial Hospital in Chicago. Sometimes the patient may want to know about the disease but not about the treatments or their possible outcomes. Also, it is important to explain that each case is individualized so patients can’t assume that all the information applies to their case.
Every piece of information that leaves the resource center at Northwestern Memorial has a disclaimer on it, says Patyk. The disclaimer states that the information is not to be substituted for medical advice; medical information is continually changing, so patients should discuss their specific concerns with a health care provider.
For more information about providing information on diagnoses with grim outcomes, contact:
• Carol Appler, RN, BSN, MA, CHES, Program Manager, Health and Wellness Center, Ireland Army Community Hospital, Fort Knox, KY 40121-5520. (502) 624-9355. Fax: (502) 624-0569. E-mail: firstname.lastname@example.org.
• Arlen Gray, MA, Family Library Coordinator, Children’s Healthcare of Atlanta, 1405 Clifton Road N.E., Atlanta, GA 30322-1101. Telephone: (404) 315-2611. E-mail: email@example.com.
• Rebecca Mehling, MLS, Librarian, The Ohio State University Medical Center, The Center for Health Information, 410 W. 10th Ave., Columbus, OH 43210. Telephone: (614) 293-3707. E-mail: firstname.lastname@example.org.
• Magdalyn Patyk, MS, RN, Coordinator, Patient Education, Nursing Development, Northwestern Memorial Hospital, 251 E. Huron, Suite 4-708, Chicago, IL 60611-2908. Telephone: (312) 926-2173. Fax: (312) 926-1741. E-mail: email@example.com.
• Candace Stiklorius, MSN, RN, C, Coordinator, Patient & Family Education Center, Hospital University Pennsylvania, 3400 Spruce St., Philadelphia, PA 19104. Tele-phone: (215) 662-4898. E-mail: firstname.lastname@example.org.