My late mother, like many women of her generation, never even imagined telling her doctor that she wanted a second medical opinion, even if she suspected that her doctor’s treatment or advice was lacking. This means that my mother would rather die than get a second opinion. To ask for one would have been rude and insulting to her physician, and that could simply never ever happen. Whatever her doctor said went unquestioned. He was the boss of her health care.
Many women today continue my mother’s preference for abdicating responsibility for one’s own healthcare. A study of women over 40 done by The Federation of Medical Women of Canada (called the LIPSTICK Survey) reported that only 10% of women surveyed knew their personal cardiac risk factors, versus 64% of women who know how much they weighed in high school.
In spite of emerging complaints on social media from weary docs that their practices are now crawling with pushy patients or others demanding prescriptions for miracle drugs they’ve learned about on those Direct To Consumer “ask your doctor” TV ads, many patients are still like my mother. They choose to simply defer to their physicians, even if that physician is not providing comprehensive information about diagnosis or treatment options.
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 I would be phoned if anything was amiss. Otherwise, I was too busy to think about following up on them.
And now when I ask the women in my heart health presentation audiences to raise their hands if they know what their blood pressure is, it’s common to see at least 1/3 of the group who have absolutely no clue about this significant risk factor for heart attack. I then ask: “How many of you don’t know the exact numbers, but have been told by your physicians that your blood pressure is ‘fine’?” Typically, another 1/3 of the hands fly up. When I ask my audiences if they know their cholesterol numbers, their awareness levels are far worse.
In fact, many people can’t answer even basic questions about their diagnosed illness, according to research from the Foundation for Informed Medical Decision Making, a non-profit patient advocacy group.
For example, they cite a survey of patients conducted by the University of Michigan which found that fewer than one in five was even asked by their physician about their preferences for medical care. Fewer 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.
A 2010 report published in the journal Annals of Internal Medicine suggests that heart patients believe that coronary stents have far greater benefits than they actually do.(1) 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. (It does not).
But about the same proportion of the cardiologists who had either initially referred these patients for angioplasty or actually performed the procedures insisted to researchers that they had told their patients that stents would do nothing more than simply relieve chest pain symptoms.
Dr. 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.”
As a patient, I’d go even further, believing that if a doctor recommends a specific treatment, patients would indeed assume that treatment = cure. See also: The Cure Myth
At the opposite end of the knowledge-seeking spectrum are the ‘e-patients‘. The late Dr. Tom Ferguson coined this term to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. In between are the ‘medical Googlers‘: people who go online to seek more health-related information than they’re getting from their health care providers.
To stop this growing reliance on Dr. Google, in 2014 Belgium launched an ill-fated “Don’t Google It” campaign to dissuade Belgian citizens from going online to learn about health. This is apparently what happens to you in Belgium if you do:
Earth to Belgium:
Your people are already online!
I wouldn’t buy a toaster before going online to learn all I can about buying toasters. Why wouldn’t I do the same with something really important, like my health?
In fact, I often wonder what would have happened had the E.R. doc who misdiagnosed my heart attack as acid reflux had instead simply Googled my symptoms: central chest pain, nausea, sweating and pain down my left arm? Instead of suggesting that people avoid Googling symptoms, I now urge all physicians to provide their patients with a curated list of credible health sites they trust (e.g. Mayo Clinic).
So 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.
While doctor-bashing seems to be a national pastime for some people, when will patients simply start acting like grownups when it comes to being responsible about their own health?
A recent Colorado study, for example, showed that the hospitalized patients surveyed (54% of them women) were often uninformed about their medications, with almost all of them unable to name 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 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 tools out there to help us 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. The Mayo Clinic Shared Decision-Making National Resource Center includes a number of tools patients can use, including the Cardiovascular Primary Prevention Choice decision aid that can help if you and your doctor are deciding on taking daily aspirin or statins to prevent heart disease.
Patient decision aids are designed to complement, rather than replace, counseling from your physician on just about any health or social decision. They’re even available online in several languages.
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.”
Want to learn more about becoming an informed patient? Watch this helpful 14-minute video from the Foundation for Informed Medical Decision Making.
(1) M.B. Rothberg et al; “Patients’ and Cardiologists’ Perceptions of the Benefits of Percutaneous Coronary Intervention for Stable Coronary Disease.” Annals of Internal Medicine, volume 153. 307-313. September 7, 2010.
NOTE FROM CAROLYN: I wrote much more about how we make good healthcare decisions (or not!) in my new book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University). You can ask for it at your favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).
Q: Doctors are experts about medicine, but are you the expert about YOU?