Before we take on the one role in life most of us will assuredly play – caring for an older parent, ailing spouse, sibling or other loved one – we need to learn to speak the language of health care. It may seem simple, but a survey by the federal Agency for Health Care Research and Quality found that 90 percent of Americans are not sufficiently proficient in the system's workings to successfully manage their own health, and that 10 percent are fully health care "illiterate."
Non-native speakers, adults who are not computer proficient and older citizens with declining cognitive skills face particular challenges managing the system. But they're not alone: While most Americans with a high-school diploma actually read at a seventh- or eighth-grade level, many insurance and informed-consent forms are written at a 12th-grade level or higher.
Poor health care literacy can imperil patient safety, especially when it comes to medication regimens. The National Patient Safety Foundation found that less-informed patients are more likely to take medicine on erratic schedules, fail to heed such instructions as "take on an empty stomach" and miss follow-up appointments.
For a caregiver, being familiar with health issues could potentially be the difference between life and death. It can certainly be the difference between higher and lower medical expenses. A Georgetown University study of adults who had stayed overnight in a hospital found that those with lower health care literacy averaged 6 percent more visits and had stays lasting, on average, nearly two days longer than patients with a greater ability to manage the system.
Health Care 101
Fundamentally, health care literacy has little to do with your education, IQ or reading level, although it does encompass reading and comprehension skills. The six essential elements include:
- Visual literacy An understanding of how to read and interpret graphs and charts, both medical and financial.
- Computer literacy Knowledge of how to search the Web for reliable information and complete online insurance and medical information forms.
- Numeric and computational ability How to calculate and reason with numbers, such as determining proper medication dosages.
- Listening skill The ability to focus and listen thoughtfully to health care professionals and frame follow-up questions.
- Verbal skills This encompasses speaking up, but also speaking clearly, asking critical questions and keeping up the conversation with doctors and nurses until you're fully satisfied that you comprehend the information they're providing.
- Decision-making This includes critical thinking and the ability to grasp the implications of test results and care options.
These skills allow caregivers to obtain and understand health care information, make informed decisions, weigh the risks and benefits of different treatments, manage costs, fill out complex medical forms and manage insurance coverage. If you or the person you've hired to look after someone lacks these skills, it's crucial to get up to speed, get help or find alternative solutions.
Don't count on every doctor to make it easier. Many are dedicated to speaking clearly with patients and caregivers, but too many others rely on technical jargon or write reports using data that laymen cannot hope to comprehend. In doing so, they open a great divide between themselves and their patients, imperiling quality care and positive outcomes. "A neuro-psychological test report is written for other neuro-psychologists," says Sara Honn Qualls, professor of psychology at the University of Colorado at Colorado Springs. "The information may be helpful, but caregivers do not understand it and have to rely on the doctor to interpret and simplify it."
A Health Care Literacy Syllabus
- Recognizing the need to close the communication gap, the American Medical Association Foundation has created Health Care Literacy Kits, including tutorial videos designed to help physicians, patients and caregivers understand how improvements in understanding can lead to better health outcomes. "Health Literacy and Patient Safety," for example, features actual encounters in which patients explain their challenges and frustrations to doctors.
- A crucial juncture for any caregiver is the moment a loved one is discharged from the hospital, whether back to his home or to a rehabilitation or long-term care facility. Crucial details about follow-up treatments, appointments and medication instructions can be lost amid the hurry, chaos and stress. Next Step in Care, launched by the United Hospital Fund in collaboration with 45 other health care groups, offers checklists for discharge, scripts with questions to ask hospitalists and other physicians, definitions of key terms and instructional videos.
- The national pharmacy chain Walgreen's has created an educational campaign focused on prescription costs. You're Worth Savings is the company's response to a survey finding that fully half of the 31.5 million Americans enrolled in Medicare Part D prescription drug plans were skipping doses or postponing refills because they were unaware they were entitled to cost-saving benefits. "The local pharmacist can become an essential part of your caregiving team," says spokesperson Joan Lunden, who cares for her 94-year-old mother. The program urges caregivers to ask pharmacists for a "plan review" and help comparing costs and efficiencies of brand-name and generic drugs.
As you work to master health care literacy and gain the knowledge you'll need to ease your caregiving journey, make sure you're able to answer all of the following questions:
- Can you define insurance terms, like deductible, premium, co-insurance and co-pay? (Four out of 10 Americans cannot, according to a survey by Kelton Research. You can find the answers from the California Department of Insurance.)
- Can you define Medicare terms, like Original Medicare, Medicare Supplement, Medi-Gap and Part D Plan? (Find the answers at Medicare.gov.)
- Do you know the difference between an EMR (electronic medical record), an EPR (electronic patient record) and an EHR (electronic health record) – and do you have EHRs for yourself and your family? (Find answers and tips at the federal health technology site, HealthIT.gov.)
- Can you read and interpret the nutritional labels on food packages to help manage your care recipient's diet? (If not, see this guide from the American Heart Association.)
- What are the three questions you should always ask of any treating physician? (According to the National Patient Safety Foundation's Ask Me 3 Program, the questions are: What is the main problem? What does the patient need to do? Why is it important for the patient to do this?)
- Do you ask about side effects, dosage instructions and potentially harmful drug interactions every time a doctor prescribes a medication? Do you know what it really means to take medication on "an empty stomach"? (See an answer from Britain's National Health Service.)
- Do you know if the relative you care for has a long-term care plan and if so, do you know its terms and benefits? (See our ABCs of Long-Term Care Insurance to learn more.)
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- Patient Navigators: New Help for Caregivers
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