AS A LIBRARIAN in a federal depository library, I've been helping patrons find health information from government sources for more than 20 years, but I recently found that I was the one who needed such information. Based on the resources I found helpful during my own experience and on other sources I've used over the years, I've designed a handout I'd like to suggest nurses fill out and distribute to patients or caregivers who may need health information. (See Government health information sources for patients and caregivers.) This article explains how I discovered this would be useful and how nurses can create a simple form for patients and caregivers to improve their understanding and save nursing time.
In April 2010, my father required an ileostomy for a perforated bowel. A leukemia survivor at age 79, he had a history of diabetes, heart disease, and an implantable cardioverter defibrillator.
My father's postoperative period was complicated by short bowel syndrome, dehydration, malnutrition, a 40-lb (18.1-kg) weight loss, and fistulae formation postileostomy reversal. In July 2010, after multiple hospital and rehab facility admissions, he declared he was “done.” He refused food and medication for 13 days and then passed away.
During the 4 months between my father's initial surgery and his death, my family was introduced to a dizzying array of medical terms and concepts. Some of these words we learned from Dad's healthcare providers during our brief encounters with them. But more often than not, these concepts were explained to us by nurses. Even then, the discussions were usually rushed because the nurses were trying to provide care for many patients and were almost invariably stretched too thin.
But once we had the magic keywords and knew how to spell them correctly, I could use MedlinePlus (http://www.nlm.nih.gov/medlineplus/). I used this website to gather information about topics including ileostomy, dehydration, short bowel syndrome, serum creatinine, blood urea nitrogen, fistulae, and palliative care. We also needed to learn about many drugs along the way, and MedlinePlus was again very useful.
MedlinePlus is a site created and maintained by the National Library of Medicine (NLM). Part of the National Institutes of Health, NLM is the world's largest biomedical library. Through MedlinePlus, NLM compiles and provides links to consumer-directed health information, including end-of-life issues, produced by many different federal agencies.
Like most Americans over age 65, my father was covered by the federal health insurance program Medicare. The Centers for Medicare and Medicaid Services maintains a website that provides information about these programs and the medical institutions that accept patients covered by Medicare and Medicaid.
I went to the Medicare website (Medicare.gov) and researched its rules and regulations about payment for hospital care and also used it to help us choose a rehab facility for my father. The Medicare site provided detailed information about nearby facilities and performance ratings to help us make an informed choice. Near the end, we tried to take care of my father at home with the help of a home healthcare agency, which we also selected by using the Medicare site.
When Dad declared that he was done fighting, the home healthcare nurse helped us get him admitted to a hospice facility. While the Medicare site does include information about which hospice services the program covers, it doesn't have information about facilities. We used the local telephone directory to locate the facility nearest my parent's home. It took the family some time to adjust to my father's decision, but we did, and Dad died very peacefully.
Proposed point-of-need handout
The methods that libraries and hospitals have developed to deliver health information to those who have to manage a chronic illness or prepare for an elective surgical procedure may not work well for a family in crisis such as ours. My father experienced many complications, but neither the hospital nor the rehab facility had brochures or handouts to give us about his specific healthcare conditions. If we wanted to know more about what was happening and why, we needed to do our own research.
Only one of my dad's facilities offered us access to computers. Because we spent almost all day every day in the hospital or rehab facility by his side, at times we had to do research in the evening when we went home to collapse. Fortunately, because of my professional training and experience, I could find what we needed fairly quickly and easily. In contrast, many patients and their family members would have had to start by using a search engine, then spend hours trying to sort out the reliable information from a huge results list.
Besides directing patients and caregivers to targeted, reliable websites, the handout I'm proposing has an area in which nurses can write the keywords patients and caregivers need to understand. That ensures that patients and caregivers don't waste time trying to figure out what to search or how to spell it correctly. For instance, it took me a long time to realize that “ileostomy” started with an “i” rather than an “e.”
Other resources I've suggested for inclusion on the handout include USA.gov, which is the official search engine for federal government information on the Internet. In my father's case, I used it to find information from the U.S. Department of Veterans Affairs (VA) about its health-related benefits. I also arranged for my father to be interred in a U.S. national cemetery through the VA. USA.gov also helps people access information from health-related federal agencies, such as the CDC and the National Institutes of Health.
Because some patients and caregivers don't have computer access at their facility, don't have tablets or laptops in a facility that offers Wi-Fi, or need assistance with their research, I've included on my sample handout a link to information about Federal Depository Libraries. To participate in the Federal Depository Library Program, libraries are required to give members of the public access to their facilities and services. Most have a government information specialist (like me) on staff to help the patient or caregiver find additional reliable sources.
On the handout, I've also included a link to Government Information Online: Ask a Librarian (govtinfo.org). This site is a cooperative effort of the government information librarians at many public, state, and academic libraries. People can chat live with a librarian online, or they can e-mail a question and receive a response fairly quickly. All services on the site are free.
At the end of my sample handout, I've included a note to let patients and caregivers know that the hospital pharmacy or their home pharmacy might be able to help them create a schedule for taking their medications. My father was discharged with about 20 different prescriptions. Some he took twice a day, others three times a day, and so on. I spent most of one morning looking at each medication container and figuring out which medications needed to be taken at what time of day. We later found out that the hospital pharmacy could have produced a schedule for us.
When creating your own customized version of the sample handout, consider including the web address for your facility. I'd also recommend including a link to the state's department of health. Many states also supply their residents with access to a set of commercial databases such as online encyclopedias and periodical indexes. Often these resources are managed by the state library or an equivalent agency. A link to those databases might also be worth adding to the handout.
Empowering patients and families
Having tapped into these government resources as an information consumer rather than simply as an information provider, I have a new and abiding respect for how useful they really are. My family made life-or-death decisions based on what I found in my research as well as the information we received from healthcare providers and nurses. I can now recommend these sources to other caregivers without reservation.
If nurses provide patients and caregivers with a handout when they need additional information, I believe this will reduce the questions they receive and give them more time to provide patient care. Patients and caregivers with even basic computer skills will be able to find information themselves and will be empowered in a situation that could otherwise make them feel very powerless indeed.
Government health information sources for patients and caregivers
To find information on specific conditions, diseases, procedures, drugs, and dietary supplements, go to:
• Medline Plus (National Library of Medicine)
Search for these keywords:
To find information about Medicare and what it covers, go to:
To find information about doctors and healthcare facilities, go to:
- Medicare.gov Resource Locator
To find other sources of information from government agencies, go to:
- USA.gov (General Services Administration)
To find someone to help you locate government information, go to:
- U.S. Government Printing Office, Federal Depository Library Program
- Government Information Online: Ask a Librarian
Please note: If you or your loved one is discharged with a complicated list of medications, the hospital pharmacy or your community pharmacy may be able to help you create a daily schedule of which medications to take at specific times throughout the day.