Alex Albin knows now that she should have trusted her instincts about the doctor she chose to perform her hip-replacement surgery. From the first, he seemed uncaring. He called her too sensitive when she said she was in pain, failed to listen to her concerns, and made her feel like a statistic, she says, rather than a person with a terrifying and agonizing illness. Albin, 49, has osteonecrosis, a disease that causes her bones to crumble. Her hip replacement would be her 13th operation. She had four more to go.
Any patient with such a severe illness wants a doctor to depend on. Albin was no exception. But, she says, she was too intimidated to object to the surgeon's behavior. The surgery, performed in 2009, led to a new round of concerns. Six months later, Albin says, she began to feel as though someone were stabbing her thigh with a knife. She could no longer walk without pain, which also kept her awake at night. The surgeon told her to wait and see whether her bones would heal, but two years later it became clear that the implant was failing. Her doctor suggested more surgery, saying they would "hope for the best." Albin decided she had enough and wrote him a letter to tell him why. "It was like being in a bad relationship for a long time until you finally realize you need to get out of there," says Albin, from Monterey, Calif. "It was toxic, expensive and unsupportive."
[Use the U.S. News Doctor Finder to find the right surgeon]
Her experience led to her transformation from a patient intimidated by her doctor to someone who demands to be a partner in medical decision-making—researching conditions, medications, treatments and where to obtain care—the challenge that led U.S. News to create Best Hospitals. Following the launch of Best Hospitals 2013 last month, U.S. News invited experts to take part in a Twitter chat and share their thoughts on how patients can become better partners in their own health care. (Quotes for this story were drawn from tweets and additional reporting.)
Victor Montori from Mayo Clinic's Center for the Science of Health Care Delivery, says a lack of collaboration between providers and patients can be costly for patients and for the health system. The Institute of Medicine has estimated that up to 98,000 hospital patients die each year as a result of medical errors, and medication errors alone account for an estimated 7,000 deaths annually. These errors are also expensive to our health system, costing between $17 billion and $29 billion a year, IOM reports.
Here are some tips that can help avert unwanted outcomes:
Do your research. The more you learn about your illness and appropriate treatment options, the better armed you will be in advocating for better care. Hospital websites can provide trustworthy resources, as can the Centers for Disease Control and Prevention and the National Institutes of Health's MedlinePlus page, which offers useful information on conditions, treatments and research studies.
Know when to choose a different doctor. "The relationship with your doctor is like marriage. If you can't have trust or cannot communicate, it's time for a divorce," says patient advocate Trisha Torrey, who founded AdvoConnection, which connects patients to advocates who can guide them through complex health care situations.
It's also time to part ways if your doctor resents that you're doing your own research, says Elizabeth Cohen, senior medical correspondent for CNN and author of "The Empowered Patient. "
A bad fit between a doctor and patient may simply come down to a clash in personalities. Whatever the reason, if you don't get along with your doctor, it's time to look elsewhere. You don't need additional stress when you're sick; it can slow your recovery, says Erin Moaratty, chief of mission delivery at the National Patient Advocate Foundation.
To find a new doctor, get referrals from other physicians and from your friends. Allow plenty of time. Finding a doctor in your health insurance network who is taking new patients may be challenging. Give the relationship time to develop; it can be difficult to tell during a single visit whether a new physician can meet your needs.
Ask probing questions. Demand evidence. Don't be shy about politely asking your doctor about his or her medical credentials, or look them up in the U.S. News Doctor Finder. Respectfully requesting information is vital for becoming an empowered patient. Before any procedure, ask your doctor how many of the procedures he's done and about his death and complication rates.
Brian Radbill, vice chairman of quality and associate professor of nephrology at Mount Sinai Medical Center in New York City, says doctors shouldn't react defensively, but should disclose the information honestly to built trust with patients.
If you're getting surgery, you should find out what will happen during the operation and what to expect afterward, including whether you will need any supplies or a caregiver when you get home, says Jaclyn Mucaria, senior vice president of ambulatory care and patient centered care services at New York-Presbyterian University Hospital of Columbia and Cornell.
Speak up. Make sure your doctor explains your treatment plan in simple language. Doctors may use medical jargon that is confusing, so it is important for you to let your doctor know when you don't understand. If the doctor is rushed, you can try another approach. "Say, 'Doctor, I see you're in a hurry, but I still have questions, how should I get them answered?'" says Torrey. When you're in the hospital, you can ask your doctor or someone else from your medical team to stop by later, says Tejal Gandhi, president of the National Patient Safety Foundation.
If you witness unsafe behavior during a hospital stay, report it. Even a doctor or nurse who fails to wash hands between patients can pose a significant health risk. The CDC reports that hospital patients get 2 million infections each year, many of them from lax handwashing practices. Cohen, of CNN, suggests using humor. "Try, 'Doctor, I'm a germaphobe like Howie Mandel. Sounds crazy, but I'd like to see you wash your hands,'" she says.
When you're in the hospital, keep track of all medications and tests administered to you. Make sure you are being given what you and your physician discussed, and that you agreed to it. Don't sign a consent form for a test or procedure until your questions are answered. Cohen tells patients to be blunt. "Say: 'I don't think I'm supposed to have this procedure and would hate for you to get in trouble for doing it,'" she says.
Tap friends or family. Someone should go with you to important medical appointments. Doctors say that patients often absorb only a fraction of the information they're given, especially when the news is upsetting. It's important to take notes, so that you can refer back to them when speaking to your physician, doing additional research or getting a second opinion. Your support network is essential during periods when you can't easily care for yourself.
In cases of particularly difficult surgery, patients should make sure they have given someone they trust the legal authority to make health care decisions if they become unable to do so, says Lynne Thomas Gordon, CEO of the American Health Information Management Association. They also should create a living will, a legal document that details what treatments a patient does and doesn't want, such as tube feeding or ventilation support.
Leverage resources. Hospitals have social workers, case managers, patient liaisons and other advocates who can help you get your questions answered, identify helpful resources and mediate disputes when necessary. They also help in critical transitions, such as from the intensive care unit to a patient room or from the hospital to home or a skilled nursing facility. Some patients may decide to hire a private health advocate, but they can be expensive, costing from $75 to $500 an hour. A patient advocate who is also a physician will charge more than one who isn't medically trained, says Torrey, who says she deals with advocates from many backgrounds with different skills. For patients with chronic or life-threatening conditions who can't afford to hire a private advocate, one option is to go through a nonprofit organization, such as the Patient Advocate Foundation, which provides services without cost.