(Last of a three-part series: Channeling Choice)
Hester Hill Schnipper received her first breast cancer diagnosis 20 years ago, at age 44. An oncology social worker and single mother in Boston, she felt terrified for herself and frightened about what would happen to her two daughters, then ages 12 and 20, if she died.
“I thought that I was well-informed,” she said. “I realized in the first two seconds that I actually knew nothing about what it felt like to be diagnosed with cancer. ... Anybody diagnosed with cancer hears it as a death sentence.”
A strong emotional response is understandable in this and many other healthcare situations. But emotion may interfere with patients' understanding of the risks and tradeoffs of treatment options and with their ability to make good decisions, researchers say.
Besides emotions, money and health literacy also can have a major impact when patients decide whether to choose surgery or other treatment options, whether to fill prescriptions and what foods to eat, said doctors, patients and healthcare researchers interviewed for Modern Healthcare's series on how patients make decisions.
Since 2005, a growing number of adults report they avoided a doctor or skipped a prescription because of cost, the Commonwealth Fund reported last year. The financial strain of needing healthcare services is greatest among the poor and near-poor. But even among insured Americans who live above the poverty line, one out of four struggles with medical debt.
The numbers are similarly bleak for health literacy, which the Institute of Medicine
describes as our ability to find and use critical health information and services. One in 10 knows enough to adequately care for their own health, according to a 2003 estimate from the National Center for Biostatistics.
“Health literacy and health numeracy are something that is a problem for everyone, even college-educated folks and doctors,” said Catharine Clay, director of shared decision making education and outreach for the Dartmouth Institute of Health Policy and Clinical Practice.
A growing number of healthcare providers and insurers are trying to better understand the factors that influence patients' health and healthcare choices.
The choices people make under the influence of emotion can have profound and costly consequences, including exposure to unnecessary risk from needless or futile treatment. “When people are in pain, their gut reaction might be, 'Oh, give me the surgery, I just want this over with,' ” said Donna Vignola, a social worker and health coach at North Shore-Long Island Jewish Health System who works with orthopedic patients. “But there may be a solution for them that isn't so invasive where they get the same relief.”
North Shore-LIJ is one of 19 health systems participating in a demonstration funded by a $22 million Center for Medicare and Medicaid Innovation grant testing how health coaches and online and video decision guides affect patients' decisions whether to undergo hip or knee surgery or instead choose medication or physical therapy.
Group Health Cooperative in Washington state saw a 26% and 38% drop in hip and knee surgery rates, respectively, after the HMO adopted video and written patient decision aids, it reported last year in the journal Health Affairs. More than nine out of 10 patients Group Health surveyed also reported the decision aids were helpful tools in understanding their condition, options and priorities, it reported in February in Health Affairs.
But results of the use of decision aids have been less consistent for medical decisions other than those involving elective surgery, a 2012 Cochrane Collaboration review found.
Experts interviewed for this article said providers also can reduce patient anxiety with encouragement and questions. “Coaching addresses the emotional impact head-on” by airing patients' fears, Clay said. It's important for patients to acknowledge the influence of emotion in their decisionmaking. “I don't think healthcare decisionmaking is rational, nor do I think that it needs to be,” she said. But, she added, “it has to be explicit.”
"I realized in the first two
seconds that I actually knew nothing about what it felt like to be diagnosed with cancer.”
—Hester Hill Schnipper, oncology social worker
Providers should not expect patients to start these conversations, said Dr. Glyn Elwyn, a senior scientist with Dartmouth College's Health Care Delivery Science Center and Institute for Health Policy and Clinical Practice. “The onus is on the professional to say, 'Don't worry, whatever you have to say, I'm not going to ridicule you. I really want to hear what your questions are,' ” he said.
Frightened cancer patients still may choose surgery or radiation treatment that their doctors think is unnecessary. This understandable fear has prompted debate among oncologists about whether terms other than “cancer” should be used in discussing with patients the presence of malignant cells. A study recently published in JAMA Internal Medicine found that women were less likely to choose surgery over watchful waiting if a low-risk ductal carcinoma in situ was instead described as “abnormal cells.”
With women facing breast and pelvic cancers, “feelings, and most particularly fear, drive most women's treatment decisions, and that's not always negative,” said Hill Schnipper, who runs cancer support groups at Beth Israel Deaconess Medical Center in Boston
For her own breast cancer treatment in 1993, she opted for a lumpectomy, radiation, chemotherapy and hormone therapy, and the outcome was favorable. Twelve years later, when she was again diagnosed with breast cancer, she felt better equipped. Her second cancer was unusual and the treatment course was uncertain. With limited evidence-based information, she said, her decisions were “absolutely feeling-based.”
She ended up choosing more aggressive chemotherapy, though there was no evidence it would help and risks from the treatment were real. “I was more worried about the breast cancer than about the risks of chemo,” she said.
Experts say better patient decisionmaking is key to quality improvement
and cost controlInvite questions and discussion
from patients about their fears. Unspoken anxiety can influence patients' choices.Health coaches employed
by some health systems help patients identify gaps in their knowledge and draft questions for doctors.Don't shy away
from talking to patients about what they can afford. Don't be afraid to correct erroneous beliefs
that patients may hold regarding risks and benefits of treatment.
Limited household income
can be a barrier to making healthy lifestyle choices and good healthcare decisions. So can lack of health insurance, or insurance with high deductibles, coinsurance, copayments, and out-of-pocket limits. Plans with high cost- sharing increasingly are becoming the norm, which worries many experts.
The Commonwealth Fund reported that 27% of U.S. adults skipped recommended tests or treatment because of cost last year, up from 19% seven years earlier. Even among insured people, 28% said cost prevented them from seeing a doctor or following through with treatment or prescriptions.
More physicians are considering the financial impact on their patients from the tests and services they order. Dr. Christopher Moriates, an assistant clinical professor at the University of California San Francisco, recently argued in the Journal of the American Medical Association that doctors should screen patients for financial barriers.
“Healthcare providers tend to put all of the blame on the individual and say they don't care,” said Dr. Shreya Kangovi, an internal medicine and pediatric physician with Penn Medicine who launched its program to target health improvement efforts in low-income ZIP codes. “But we fail sometimes to see the range of external constraints that people face.”
Physicians interviewed for this article said they more frequently hear insured and uninsured patients ask how to reduce medical bills. “It's a unique opportunity to have a very evidence-based medicine conversation with a person,” said Dr. Warren Licht, director of strategic initiatives for North Shore-Long Island Jewish in Manhattan.
Licht said he helps patients prioritize recommended screening and other tests and procedures based on their health risks and income.
"It’s a unique opportunity to have a
very evidence-based medicine conversation with a person.”
—Dr. Warren Licht, director of strategic initiatives
for North Shore-Long Island Jewish Hospital
Many Americans don't have enough information or education to make fully informed choices about healthy lifestyles, medical treatments or navigating the complex U.S. healthcare system. Poorly prepared patients can be overwhelmed by new information that follows a diagnosis. “When patients are in doctors' offices, they (might) hear 50% of what's being said and maybe their relative hears another 30%, but they walk away without 20%,” North Shore-LIJ's Vignola said.
As health systems seek to better manage the cost of care for chronically ill, complex patients under Medicaid managed care and accountable care contracts, more are hiring navigators and care managers to assist patients.
Even health professionals may need help. Jennifer Lorenz, a nurse, weighed 235 pounds. She had turned to numerous diets over the years, without success. “You can only eat soup for so many days before you're like, forget this, and you eat the whole damn pizza,” said Lorenz, 39, manager of quality, risk and infection control at University Hospitals Geauga Medical Center in Chardon, Ohio.
Her confidence eroded, and so did her health. She had to start taking blood pressure medication.
Ten months ago, Lorenz began attending classes on nutrition, sleep, hydration and exercise offered by her employer during her lunch break. A dietitian discussed how to read nutrition labels and eat healthy portion sizes, the pitfalls of processed foods and how to handle high-calorie holidays.
Support and information made all difference, she said. She now reads ingredients on labels in the supermarket. Lorenz works out regularly with a trainer and no longer takes blood pressure medication. She has lost 55 pounds. “I am not on a diet,” Lorenz said. “I made a lifestyle change.”
Dr. Eric Bieber, chief medical officer for University Hospitals, said such efforts won't yield immediate savings, but should do so over the longer term, when combined with interventions to prevent complications of obesity, diabetes and other chronic conditions for these patients. “Better yet, they may never become diabetic,” he said. Follow Melanie Evans on Twitter: @MHmevans