Doctors argue for decision aids to promote patient engagement

(Second of a three-part series: Channeling Choice)

Jeff Cohen learned last May that a biopsy of his prostate came back positive for cancer. To treat the abnormal cells, his urologist offered a choice between radiation and surgery. But Cohen wanted a different option. Couldn't he choose instead to simply monitor the progress of the cancer through active surveillance?

That question—one formed by the 58-year-old's values and knowledge—sparked a discussion with his doctor that patient advocates, health policymakers and clinicians agree is too often missing from U.S. healthcare. That omission is a critical gap, they say, which leaves patients at risk for poorly informed decisions, unnecessary care and frustration that prompts some to abandon treatment.

It may also add to the nation's rising healthcare costs. The Institute of Medicine in 2010 put the annual price of unnecessary medical care at $210 billion. In addition, the underuse of appropriate treatment, particularly medications, because of poor patient decisions and other factors inflates the nation's healthcare tab.

Nearly five decades of research exploring what impact better-informed and engaged patients have on medical decisionmaking has found some benefit to patients' health and satisfaction. But overall, the results are mixed, according to a report last year by the Cochrane Collaboration, a not-for-profit network of experts who evaluate medical research. The studies that suggest cost savings from patients choosing more conservative treatment options through greater engagement may be overlooking changing physician practice as a factor behind reduced utilization, some experts say.

Separately, the Cochrane Collaboration reported last year that patients who used tools to guide their decisions had a better grasp of their choices and risks. They were also more likely to select less intense or invasive treatment when considering major elective surgery, though results were mixed for other decisions. The influence of decision aids on adherence to medication or overall costs was “inconclusive,” according to the report.

But that uncertainty does not reduce the ethical obligation to better inform patients, or lessen the promise of tools that help patients understand their options and identify their values, some doctors say. “It is the right thing to do,” said Dr. Victor Montori, associate director of the Health Care Delivery Research Program at the Mayo Clinic Center for the Science of Health Care Delivery.

More research will yield more clarity on how tools to promote shared decisionmaking affect health and medical spending. “I don't think the word yet is in on this topic,” he said.

The challenges that patients face as they grapple with decisions about treatment are formidable. For all that doctors may advise and prescribe, it falls to patients to make often complicated and painful decisions about what course of treatment to pursue. Some do so with more care and information than others, for understandable reasons.

A new diagnosis can plunge patients into the highly technical healthcare ecosystem, where the strain of illness can be compounded by the financial stress of medical bills. Exhaustion, physical pain, fear and shock can hamper patients' ability to absorb many of the essential details about a diagnosis or the risks and benefits of treatment.

Many patients start with a limited base of knowledge. Some are simply misinformed.

Nearly nine out of 10 heart disease patients with chronic stable angina in a 2010 study wrongly believed that percutaneous coronary intervention with balloon angioplasty or stents would reduce heart attack risk. “The patient, they're at such a disadvantage,” said Dr. Kristian Novakovic, a urologic oncologist at NorthShore University HealthSystem outside Chicago. “How do you educate yourself about something that you know nothing about? It's a daunting task.”

Treatment choices can be especially terrifying and confusing when information is limited, treatment is risky and the underlying disease is life-threatening or debilitating. Psychologists and economists say patients confronting such situations easily fall prey to the inherent weaknesses people have when making healthcare decisions.

People do a poor job of grasping the risks and probabilities associated with any disease and treatment, which is crucial to making informed choices about medical care. They often fixate on what is easiest to remember—which may not be the most likely outcome. And when it comes to healthcare, emotion can sway decisions in ways that undermine health or leads to fruitless interventions.

“The gut is a big part of this,” said Dr. Steven Katz, a professor of medicine, health management and policy at the University of Michigan who studies decisionmaking and communication in cancer care. “The gut rules a lot. It's the low part of our brain. It's very powerful.”

Estimates for care that are provided unnecessarily or are underused point to significant financial and personal costs. Studies of percutaneous coronary intervention and prostate cancer treatment suggest patients undergo invasive and life-altering treatment without the services being medically necessary or appropriate.

An analysis last year of one cardiac registry with data from 2,400 hospitals identified 6% of elective percutaneous coronary interventions that were unnecessary. Research published in June by the Annals of Internal Medicine reported widespread and growing use of intensity-modulated radiation therapy or open radical prostatectomy surgery among men with a low-risk prognosis of death from prostate cancer.

“There are many of these low-risk prostate cancers that will never affect a man in their lifetime,” said Dr. Colleen Lawton, a board member for the American Society for Radiation Oncology, which last year urged doctors and patients to discuss monitoring less-aggressive cancer before starting treatment. Radiation or surgery come with their own risks and side effects, including impotence and incontinence.

That society's recommendation to discuss monitoring less-aggressive prostate cancer is one of more than 230 recommendations issued by nearly five dozen medical groups since 2012 in an ongoing campaign to reduce overuse in medicine.

The campaign, known as Choosing Wisely and launched by the ABIM Foundation, urges patients to raise questions about when care is necessary, and also targets doctors. Physicians may not be up-to-date on recent changes to treatment guidelines or may be swayed by financial incentives for overuse, from ownership in treatment centers to payment that is tied to the volume of care they deliver.

Prostate cancer patients may nonetheless choose treatment, said Lawton, but they should do so informed that active surveillance is an option that could spare them debilitating side effects.

“If you don't say it, then people won't choose it,” said Dr. Glyn Elwyn, a professor and senior scientist with Dartmouth College's Health Care Delivery Science Center and Institute for Health Policy and Clinical Practice. After numerous studies of patient engagement, Elwyn has developed nearly two dozen one-page comparisons of the treatment options for patients. The options, laid out in a grid, answer common questions about how effective or risky each option may be.

The growing list of grids includes drug choices to treat atrial fibrillation, whether to treat breast cancer with a mastectomy, and an analysis of joint replacement, steroid injections and painkillers as options to manage osteoarthritis pain.

Elwyn's grids and other decision aids—such as shared decisionmaking videos developed by the Informed Medical Decisionmaking Foundation and interactive Web-based programs offered by Healthwise—increasingly are used by clinicians to better inform patients about their disease and treatment options and help patients identify the choice that best fits their values. The Patient Protection and Affordable Care Act explicitly encourages the development and certification of such decision aids, and authorizes the CMS Innovation Center to test shared patient decisionmaking models.

Novakovic at NorthShore uses a prostate cancer aid that asks patients to rate their preference for trade-offs they may face, such as a one-year loss in life expectancy with no incontinence compared with an irregular bladder for six months but no change in life span. “I believe patients should know what their options are,” Novakovic said. “They should not come in to a urologist's office after being diagnosed with prostate cancer and the urologist tells them they have cancer and what day next week do they want to have their prostate removed. In the year 2013, that's inappropriate.”

For Cohen, active surveillance seemed like an attractive option even though he had one measure among the surveillance criteria that was slightly elevated. Active surveillance involved more rigorous monitoring than the watchful waiting recommended for older men. He routinely scheduled tests, exams and ultrasounds to determine if his low-risk tumor began aggressively growing, which could threaten his life.

“I decided that the quality of my life was as important as the length of my life,” he said about his initial decision to reject surgery or radiation, which came with “intimidating” potential side effects such as incontinence and impotence.

But he continued to explore treatment options, including a visit to a proton beam therapy center, where he was encouraged to seek a second reading of his biopsy. He did, and it detected more aggressive cancer, which prompted Cohen to reconsider his options. In mid-October, he underwent brachytherapy, a less radical form of radiation therapy.

Yet not every well-informed patient opts for the less radical approach to treatment, especially when it comes to cancer. “When you put the name cancer on something, all of a sudden people's treatment preferences become more radical,” said George Loewenstein, an economics and psychology professor at Carnegie Mellon University who studies the role of emotion in healthcare decisions.

Rosalie Weener asked her primary-care physician about a double mastectomy even before a pathology report confirmed bilateral breast cancer in May 2012. She raised the question again after a diagnosis that her cancer was rare and fast-growing.

Weener said she did not want the double mastectomy, but was more concerned with ridding herself of the malignant cells, even hand-delivering records from one hospital to another to speed surgery. “To me, it's like, 'get this out of me,'” she said. “That was most important to me at that point.”

After reassurances from her oncologists that a mastectomy wasn't necessary, she opted for less radical surgery. That was followed by post-operative chemotherapy.

But then she was confronted with another choice—whether to undergo radiation, which could kill lingering cancer cells. It, too, came with unwanted side effects. It might damage her heart and lungs. Moreover, repeat radiation treatments sometimes damage cells in ways that lead to new cancers many years down the road.

Still, Weener chose radiation. “If it comes back, I'll know I've done everything,” she said.

The goal of promoting better decisionmaking by patients isn't always to prevent overuse of procedures or tests. Drugs that are proven life savers are not used widely enough. Adherence to diabetes medication and statins that prevent heart attacks is less than 65% and 70%, respectively. One study found unused medication adds $100 billion to the nation's healthcare tab each year.

Money and insurance play a part in medication adherence, but so do unpleasant side effects. Those concerns and beliefs should be addressed with more information, experts said. “Absent any understanding themselves of what the medication is going to do for them, most people are going to stop taking it,” Loewenstein said.

Carolinas HealthCare System in Charlotte, N.C., was able to sharply reduce emergency department and hospital visits with a program targeting appropriate medication use. The effort, tested across six clinics, asked patients to meet with a nurse, pharmacist, health coach and doctor to identify goals and preferences regarding their medications' costs, side effects and convenience. ED visits dropped 44% in the first six months compared with the prior six months, officials said. Hospitalization plunged 43%.

Patients are more likely to follow treatment when the therapy meets their needs, said Dr. Sveta Mohanan, a Carolinas primary-care physician. “You can't tell patients anything. You have to find out their priorities and meet those. No therapy is going to work if it's not being taken.”

The program also focuses on educating patients about making the best use of drugs and therapeutic devices to manage chronic conditions. Shaletha Digsby, 31, an asthma patient at Carolinas, struggled to catch her breath when she played basketball once a week, even though she used the inhaler she had been given four years earlier when diagnosed with the disease.

After reviewing her medication with the Carolinas team, she is now a better-informed patient—knowing when and how to use her inhaler. She now plays basketball three times a week. “I catch it before I start wheezing and end up short of breath,” she said.

Follow Melanie Evans on Twitter: @MHmevans