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.