You might not realize it, but your doctor has guidelines for almost every decision he or she makes about your health care. These extensive guideline documents have recommendations about how to treat you, based on long summaries of the scientific evidence. Confusingly, there are often multiple guidelines from different organizations for the same condition. You would expect these experts to make the same recommendations about the same conditions. But they often don’t. The Agency for Healthcare Research and Quality, for example, has 477 diabetes guideline documents on its website. And experts sometimes have financial arrangements with companies that stand to benefit from their guidance.
Besides being confusing, these guidelines are problematic for other reasons.
Guidelines are about large populations — they are not about individuals.
Guideline recommendations are drawn from scientific research, usually summaries of more than one study. So they consider what is appropriate across a population of people. But doctors and others need to remember that the people included in studies are hardly representative of an individual patient’s circumstances. The people the guidelines were written for might be older or younger than you. Or come from different backgrounds. You might also have more than one condition that your doctor needs to carefully consider before he or she makes a decision about your care. That’s why guidelines are meant to be just that — guides — not hard and fast rules. Yet doctors tend to treat them like requirements, worrying that if they do not “follow” guidelines, they might be open to lawsuits.
[See: 8 Questions to Ask Your Doctor About Colon Cancer.]
Guidelines are long and full of jargon — and hardly ever used.
Many guideline documents are hundreds of pages long and written for professionals. They are not easy to read, even for doctors. The U.S. Department for Health and Human Services, for example, has a “quick” guideline for asthma care that is 11 pages long.
This exhaustive information isn’t necessarily useful for your doctor as he or she tries to make decisions specific to your care. Some organizations make patient-friendly guidelines, but they are difficult to find online, even with perfect Google search terms.
[See: A Tour of Mammographic Screenings During Your Life.]
Guidelines don’t consider what matters to individual patients.
Perhaps the most important problem with guidelines is that they seem to assume that all patients have the same goals. Not only do guidelines need to be interpreted with care, it is also clear that as patients we have individual priorities and preferences. Some things matter more to me than they do to my neighbor. So why would the same recommendations apply to both of us? These tools fail to make it clear that patient preferences matter. Of course it is important to have summaries of scientific knowledge, but doctors need to be curious about what actually matters to patients, before good decisions can be made. As currently designed, guidelines may well stand in the way of you getting the care that is right for you.
[See: 10 Questions Doctors Wish Their Patients Would Ask.]
Are there solutions?
Many people — doctors, policymakers and patients — are realizing the shortcomings of guidelines. They’re helpful digests of scientific evidence, but they fail when it comes to supporting patients and doctors to work together to make better decisions.
However, there are efforts being made to design tools, called patient decision aids, that are much easier to use, yet are trustworthy. Descriptions of alternative treatments that allow easy comparisons are the key to these new tools. Along with answers to patients’ frequently asked questions, these kinds of tools are:
— Short enough to be used in conversations between doctors and patients.
— Free of financial competing interests as possible.
— Designed with patients, for patients.
— Help you ask the right questions.
It is also a nice surprise that doctors also find these tools be rather useful. Short and sweet, yet accurate, works for most people.
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Are Medical Guidelines Harming Your Health Care? originally appeared on usnews.com
