Prepare to Care: A Resource Guide for Families was developed by AARP to help make the job more manageable. Here’s how to obtain a free copy.
by Amanda Spake, July 23, 2010
En español | For many health care providers, the most frustrating part of their job is piecing together the medical histories of patients who no longer remember which drugs they are taking for which conditions.
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Dr. Katalin Roth, director of geriatrics and palliative medicine at the George Washington School of Medicine and Health Sciences in Washington, D.C., says "Patients have a responsibility to keep a record with their medications and allergies, a list of chronic illnesses, and any special condition, such as a bleeding problem. Caregivers need that information, too. Those records could be crucial to helping health care workers save your life."
Keeping good medical records is only the beginning. The complexity of today's health care system means patients need to ask for complete information from their doctors about the benefits and risks of tests, medications and procedures, and to research the track records of specialists and hospitals before they undergo surgeries or complicated treatments. Taking a more active role in your health care or that of your loved ones can be the gateway to better health, but it also requires management skills. Here's what to do:
Organize your personal health information
As Roth notes, you need to give new doctors and others caring for you in an emergency a list of all the prescription drugs and supplements you take, your medication allergies, chronic conditions, and the surgeries you've had. You can use a sheet of paper, an index card, the memo function on a cell phone, or a file on a handheld computer. Ideally, you should have copies of recent test results, your family medical history, and the name of an emergency contact person. It's best to have these pieces of information in writing, because the one thing you forget could be the detail that matters most. Make sure your medical fact sheet is up to date.
Avoid unnecessary tests and procedures
When your doctor recommends a medical test or a procedure, he or she should be able to explain the reason for it, and the benefits and risks involved. You should know beforehand if the test will give a definitive diagnosis, or if more tests will be required. How much will it cost, and is there is a less expensive alternative? Will the test require hospitalization? What are the short- and long-term risks? Studies on the increasing use of CT scans, for instance, suggest that 20 to 40 percent of them provide little useful information and thus may not be worth the risks associated with getting the large dose of radiation they entail.
Likewise, the benefits and risks of any recommended surgery or procedure should be clear to you. What is the evidence that supports its safety and effectiveness for your condition? Are there less invasive options? If your doctor can't give you this information, get a second opinion.
Most insurance plans cover second opinions. Call your plan's patient services representative to ask if the service is covered. To find a provider for a second opinion, ask for referrals from family and friends, your health plan or your primary care provider.
Next: How to choose doctors and hospitals. >>
Ask questions about diagnoses and conditions
When a diagnosis is made, ask the provider how the diagnosis was made. Some conditions, like an aortic aneurysm or certain early-stage cancers, are difficult to diagnose initially. Ask if additional tests should be performed to verify that the diagnosis is correct. If your doctor offers treatment options, take careful notes so you can review them after you've left the doctor's office.
There is a world of solid health information on the Web at: The National Institutes of Health, AARP, the Mayo Clinic, the American Cancer Society, the American Heart Association, the Centers for Disease Control and Prevention, and other sites. Websites associated with hospitals, medical societies and federal health agencies contain science-based articles on conditions, methods of diagnosis and testing, treatment options, and benefits and risks. Opinion, advice or product promotion should be set apart from research results. A website on osteoporosis with testimonials about a "natural" treatment that "guarantees" a certain improvement in bone growth, for example, should not necessarily be taken at face value. Reputable scientists rarely guarantee anything. Make sure any results from medical studies cited are from research that has been published in a medical journal, and not merely "publication expected." Studies published in scientific journals have been reviewed by other scientists to make sure methods used to arrive at the results are sound.
Choose your doctors wisely
Your search for a doctor should start with your health plan so you can find out which clinics and providers are available to you. Get referrals, if possible, from friends, relatives or other medical providers you trust.
Look for doctors who are "board-certified" in the type of medical care you need. "Board-certified" means that the physician has advanced training in an area of specialty. You can check a provider's qualifications, licensing information, education, background and any disciplinary actions against the physician at docboard.org, a website run by state medical licensing boards.
Set up an introductory appointment to interview the doctor. Bring your personal medical record and history to review. See if the doctor listens to you, invites questions and treats you with respect. Be sure to ask whether the doctor has experience treating your condition or performing the procedure you are considering, and what his or her results have been.
Choose your hospital wisely
In choosing a hospital, consider where your doctor has privileges to practice. You probably also want a hospital that is covered by your health plan, and one with a good success record and low complication rate for the procedure you are considering. On a variety of patient care measures, such as complication and infection rates, attentiveness of nurses, whether medications are administered at the right time for your condition, and other factors, you can compare hospitals in your area at Hospital Compare, a website provided by Medicare.
Some states, like California, and some local medical groups also rate hospitals and maintain websites that cover key indicators of hospital quality, such as mortality and complication rates for many common procedures, and patient satisfaction (see, for example, calhospitalcompare.org).
When choosing a hospital, you can also check its accreditation and inspection reports by The Joint Commission (formerly the Joint Commission on Accreditation of Healthcare Organizations). This report will tell you how the accrediting agency rates the hospital on common errors, such as whether the wrong medication is given to patients often, or whether drugs are administered at the right time, such as antibiotics before, not after, surgery to prevent infections as the surgical site. Equally important is the hospital's ability to prevent you from acquiring an infection caused by one of the drug-resistant bugs rampant in hospitals, like MRSA. Both medication errors and hospital-acquired infections kill over 100,000 patients every year, and you want to choose a hospital that The Joint Commission rates as highly effective in protecting patients against these problems.
Next: How to stay on top of your medications. >>
Even in the best hospitals, many people need an advocate to help them monitor medications and make sure that the correct procedure will be performed once they are under anesthesia. The doctors and other health professionals should keep you and your advocate informed about your care, and your progress toward discharge. Many hospitals employ social workers or patient advocates to assist you. Ask for one if you need to.
Stay on top of your medications
The Institute of Medicine estimates that the nation's Medicare population alone suffers as many as 980,000 injuries due to medication errors every year. Some studies indicate that more than one-third of the time physicians fail to tell their patients the name of a drug they are prescribing, how to take it, how long to take it, or what type of bad reaction could result from taking it.
If your doctor prescribes a drug, be sure you know what it's for, its name and how and when to take it, whether there could be interactions with the other drugs or supplements you take, and what adverse reactions could occur. You would be wise to ask the cost — a generic may do just as well for you as a brand name drug. When you fill your prescription, make sure it's the drug you were prescribed, not a medication with a similar name. A busy pharmacist can easily mix up medroxyprogestrone, a synthetic female hormone for menopausal problems, with methylprednisolone, a corticosteroid used to treat lupus, or methyphenidate, a stimulant prescribed for ADHD.
If you're concerned about a medication, ask a friend or relative who is a medical professional to help you review the drug, or all of your medications. There are excellent drug information tools on the Internet, such as those at AARP.org and MedicineNet.com; each entry is reviewed by a doctor and a pharmacist.
When to hire a health care advocate
Despite your best efforts, sometimes you need a professional advocate. Individuals and families often require assistance with such tasks as filing a large number of claims for reimbursement, understanding nursing home options, or securing a power of attorney.
Also, if you are facing a difficult diagnosis, you may need another set of eyes and ears. Choose an advocate who is a good listener and won't interrupt. An advocate can remind you of questions you need to ask and help you remember later what the doctor said about the diagnosis, treatment and likely outcomes.
Two websites offer serachable lists of health care advocates: AdvConnection and the National Association of Healthcare Advocacy Consultants.
Amanda Spake writes about health and environmental issues for The Nation, the Los Angeles Times, SmartMoney, and AARP Bulletin, among other publications.
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