A reporter’s guide to medical decision making

By Kat McGowan

Today, patients are often faced with life-altering medical decisions. A woman with early stage breast cancer may be asked by her doctor to decide whether she prefers a complete mastectomy or a breast-sparing lumpectomy followed by radiation treatment. A man with early prostate cancer might get a similar question: Would he rather have radiation therapy, surgery to remove the tumor, or do nothing but monitor the situation?

In medical situations like these where there is no single best treatment, making sure that patients are involved in decisions seems like a good idea. It makes room for individual preferences and priorities, and puts treatment in line with the patient’s values. But people faced with such decisions frequently lack the resources, support, and expert coaching that they need to make a truly informed choice, said the participants at Health Journalism 2012 panel, “A reporter’s guide to medical decision making.”

The ethical standard of “informed consent” assumes that patients have all the right information about their condition and understand the consequences of their decisions. That’s often not the case, said Michael J. Barry, M.D., president of the Informed Medical Decisions Foundation, which promotes research and policy on collaborative decisionmaking. He cited the example of elective coronary revascularization – stents inserted in the arteries to relieve chest pain in some heart conditions. Dozens of randomized trials have proven that while stents can ease pain, they don’t do any better than medical therapy at reducing the risk of heart attack and death. Nonetheless, more than three-quarters of patients getting a stent think the implants will improve not just their symptoms but their chances of survival.

In another study, Barry’s group asked physicians to identify the four or five essential facts a patient should know before making a decision in each of 10 medical scenarios. In eight of 10 of those cases, the actual patients had less than half the information. “Informed consent as we do it now is fairly broken,” said Barry, who is also an internist and chief of the General Medicine Unit at Massachusetts General Hospital.

Collaborative decisionmaking, in which clinician and patient talk over the options and make a joint agreement about what’s best, might improve this situation and potentially reduce unnecessary procedures as well. A meta-analysis of 34 shared decisionmaking studies showed that the process reduced major elective surgeries by 20 percent. Significant challenges include resistance from doctors, patients who may be overwhelmed and under-informed, and the tendency of the medical system to promote maximal care. “In American medicine, we pay a lot for the treatment, but not a lot for figuring out whether you want or need that treatment,” Barry said.

Decision aids – brochures, videos, guidebooks and other materials that present facts and describe alternatives – might improve shared decisionmaking. These are created to help inform the conversation between patient and medical provider, whether that’s a doctor, nurse, or even premedical student, as in one recent study at the University of California San Francisco.

Medical anthropologist Clarissa Shu, Ph.D., a research associate at the Group Health Research Institute, described a decision aid project at the large Seattle-based practice Group Health. Since 2009, patients facing any of 12 “preference-sensitive” surgical decisions such as uterine fibroid removal or treatment of benign prostatic hyperplasia get materials that describe risks and benefits, potential complications, and possible outcomes for each treatment strategy.

Her preliminary data suggest that rates of some elective surgeries in the Group Health system may be declining. But there were hurdles, said Hsu: some providers were concerned that the process might delay treatment for life-threatening illness, and in other cases logistical challenges got in the way.

Joe Selby, M.D., executive director of the Patient Centered Outcomes Research Institute, described the mission of this new nongovernmental agency, which was created by the Affordable Care Act and endowed with a budget scheduled to ramp up to a half-billion dollars a year. Its aims include funding comparative assessments of diagnostic and treatment strategies – evaluating which options work better and for whom – improving patient education, and promoting better health care decisions. In the future, Selby suggested, there may be opportunities for journalists to partner with researchers for PCORI funding to investigate how to educate patients.

Surveys report that more than half of patients want to be part of the decisionmaking process, Selby said.

Barry said that “The patient will often approach a decision assuming there’s one right answer, and that the doctor is the guardian of the right answer,” but once they learn that several choices are equally reasonable, most people want to get more involved in the decision-making process.

In the end, using patient priorities to guide treatment decisions sounds promising, but may be difficult to put into practice. “I’m wondering if this will be enough to turn the supertanker around,” said independent journalist Irene Wielawski of Pound Ridge, N.Y.

Whether shared decision-making can win over skeptical doctors, get patients up to speed on complex medical issues, and reduce overtreatment remains to be seen.

Kat McGowan, a freelance journalist and editor, writes and reports for consumer magazines and specialty science publications. She edits Discover magazines’s single-subject newsstand-only special issues.