My mother, like many women of her generation, would never dream of telling her doctor that she wants a second medical opinion, even if she suspected that her doctor’s treatment or advice was lacking. This means that, if he were negligent or incompetent or even downright dangerous – which he’s not, by the way – my mother would rather die than get a second opinion. To ask for one would be rude and insulting to her physician, and that just would never happen. Whatever her doctor says goes unquestioned. He is the boss of her health care.
She’s not alone. Many patients choose to simply defer to their physicians, even when that physician is not providing comprehensive information about diagnosis or treatment options. As orthopedic surgeon Dr. Howard Luks described some of his colleagues:
“Time is short for doctors, they often have biases, and many assume patients don’t want the burden of overwhelming information.”
Before my own heart attack, I could have been one of those patients, too. When my doctor ordered lab tests for me, for example, I figured that if the results were bad, I would be phoned. Otherwise, I was much too busy to even think about them.
And now when I ask the women in my heart health audiences to raise their hands if they know their blood pressure numbers, it’s common to see at least 1/3 of the group who have absolutely no clue. And when I ask them if they know their cholesterol numbers, the awareness level is even worse.
A 2008 study of women over 40 done by The Federation of Medical Women of Canada (called the LIPSTICK Survey) reported that women spend more time thinking about their weight than they do about their hearts. Only 10% of women surveyed, for example, knew their personal cardiac risk factors, versus 64% of women who know how much they weighed in high school.
In fact, many people can’t answer even basic questions about their illnesses, according to research from the Foundation for Informed Medical Decision Making, a non-profit patient advocacy group. For example, a recent survey of patients conducted by the University of Michigan found that fewer than one in five was even asked by their physician about their preferences for medical care. Less than 50% knew detailed information about their care that a truly informed patient would understand prior to making a treatment decision. The survey also found that physicians often neglected to tell their patients about the potential disadvantages of treatments or tests that they recommended.
Another study published in the journal Annals of Internal Medicine suggests that heart patients believe that coronary stents have far greater benefits than they actually do. The research found that over 80% of heart patients studied who had undergone balloon angioplasty with stainless steel stents implanted in their blocked coronary arteries believed that the procedure would cut their odds of having a future heart attack. But about the same proportion of the cardiologists who had either referred these patients for angioplasty or actually performed the procedures reported to researchers that they had told their patients that stents would do nothing more than simply relieve chest pain.
Annette O’Connor, a researcher at the University of Ottawa who has long studied how best to help patients make informed decisions, adds:
“A patient may think a treatment is going to provide a cure, when it might only lessen symptoms, for example, or that the risks are more or less serious than they actually are.”
At the opposite end of this knowledge-seeking spectrum are the ‘e-patients’ or ‘medical Googlers’, patients who are keenly aware of the importance of being informed participants in their own health care.
Doctors may be experts about the field of medicine, but you are the expert about YOU.
If your doctor says: “This is the test. This is the drug. This is the treatment.” – be sure to ask:
“What other options or consequences should I know about before we decide?”
You may need more time or more information before you’re able to decide.
And while doctor-bashing seems to be a national pastime for some people, when will patients start acting like grownups when it comes to being responsible for knowing about their own health? A recent Colorado study, for example, showed that the hospitalized patients surveyed (54% of them women) were often clueless when asked about their medications, with almost all of them unable to name all their medications and many leaving out as many as a half dozen drugs they had been prescribed.
Every patient needs to be an informed partner in every health care decision, not just a passive, willing victim. And there can be profound safety consequences for patients who are not well informed. Misunderstanding technical aspects of treatment or the relative risks and benefits of alternative options may mean that patients choose treatments with a greater risk of adverse consequences than they might otherwise have chosen, according to the Foundation for Informed Medical Decision Making:
“We believe that without adequate knowledge of the risks and benefits associated with all treatment options, patients may be exposed to risks or experience harm that they would choose to avoid if only they were informed.”
The Foundation’s excellent website gives real-life examples of serious medical decisions that informed patients have made, including patients who:
- decided not to have bypass surgery for coronary heart disease
- made a decision about how diabetes would be managed
- decided not to have repeat surgery for a back condition
- chose mastectomy over lumpectomy for early stage breast cancer
Did you know that there are even tools to help patients make hard decisions like these?
For example, the Ottawa Personal Decision Guide from the Ottawa Hospital Research Institute, an affiliate of the University of Ottawa, is a patient decision aid that can help you make better decisions by providing information about options and outcomes, and also by clarifying your personal values.
Patient decision aids are designed to complement, rather than replace, counselling from your physician on just about any health or social decision. They’re even available online in Spanish and Japanese versions.
The Foundation for Informed Medical Decision Making insists that it is the ethical right of all patients to be informed and involved in all health care decisions:
“We believe that patients should have the opportunity to learn about all relevant treatment options, and to engage in an active shared decision-making process in which they communicate their values and preferences to their health care providers.”
Watch this helpful 20-minute video from the Foundation for Informed Medical Decision Making.
- Say What? Do Patients Really Hear What Doctors Tell Them?
- What Doctors Really Think About Women Who Are Medical Googlers
- Reliable Health Info From the ‘Medically Unqualified’?
- How a Heart Attack Turned Me into an “Information Flâneuse”
- Are You the Quarterback of your Own Heart Health Team?
- Cardiologists Accused of Implanting Cardiac Stents That Weren’t Needed