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Diagnosed with breast cancer last year at 51, Mary Bianchi balked when her surgeon laid out an aggressive plan for treatment: a lumpectomy and removal of lymph nodes without first testing them to see if the cancer had spread. She went home and surfed the Web for information about additional options, but soon felt overwhelmed by the plethora of choices.
Patient Maria Hom, center, asks Dr. Shelley Hwang, an associate professor of surgery at the UCSF Breast Center, questions with the help of a pre-medical intern, Alexandra Teng. Interns act as coaches for patients, helping them brainstorm questions and making sure all their concerns are addressed in meetings with doctors.
Ms. Bianchi then sought a second opinion at the University of California, San Francisco Breast Care Center. The center’s Decision Services unit gave her videos and booklets on the risks and benefits of different treatment options. It also offered her a personal coach to help brainstorm questions and concerns, accompany her on doctor visits and make audio recordings of medical consultations. “It really enabled me to calm down and rationally think things through,” says Ms. Bianchi. “For the first time I felt like a participant in the decision-making process.”
For patients like Ms. Bianchi, the current health-policy debate comes down to a very personal issue: how to make ever-more-complex decisions when faced with multiple options, each with no clear advantage and with risks and harms that patients may value differently. Preliminary data from the National Survey of Medical Decisions, conducted by researchers at the University of Michigan, showed that doctors are more likely to discuss the advantages of treatments while giving short shrift to the disadvantages. The study also found that doctors often offer their opinion but much less frequently ask the patient’s own opinion.
“There are an increasing number of situations where there is not a clear-cut winner in terms of treatment, and patients don’t get the information they should about side effects and things that could go wrong before making decisions,” says Karen Sepucha, a scientist at the Health Decision Research Unit of Massachusetts General Hospital. “The result is a huge disconnect between what patients truly care about and what providers feel is most important for patients.”
Though decision-aid programs cost money to deliver, they appear to save money in the long run. Studies show that when patients understand their choices and share in the decision-making process with their doctors, they tend to choose less-invasive and less-expensive treatments than they would have otherwise received. A number of states and policymakers in Washington are considering legislation that would provide funding to study the use of shared-decision-making programs and in some cases require such programs to be offered to patients as part of the informed-consent process.
A growing number of hospitals, medical groups and health plans are using decision aids offered by the Foundation for Informed Medical Decision Making, which grew out of research at Dartmouth University, for conditions where there is no consensus as to the best course of treatment. The foundation offers decision aids for 23 diseases and conditions including breast and prostate cancer, knee surgery, end-of-life care and uterine fibroids. Health Dialog, its for-profit partner, provides the programs to health plans and employers reaching about 20 million beneficiaries. Using claims data, Health Dialog determines which patients might benefit from shared decision making, then reaches out to them by mail or phone to offer informational DVDs and telephone-coaching sessions to help make decisions.
“We aren’t telling patients to seek lower costs or less invasive procedures, but on average patients are more risk averse than physicians,” says Health Dialog chief science officer David Wennberg.
Health Dialog offers three of its decision-support videos for viewing free online at healthdialog.com and is exploring ways to offer more such resources directly to consumers for a fee. The University of California, San Francisco Breast Center also has a Web site, decisionservices.ucsf.edu, with links to resources and information for patients. Jeff Belkora, director of the hospital’s Decision Services unit, offers a prompt sheet to help patients formulate questions for doctors and other tips for successful doctor visits on his own site, guidesmith.org.
“No decision aid is going to address all the issues unique to your case,” Dr. Belkora says. “But they can help stimulate questions for your doctors, who can explain what is unique to you and help you to be on top of your game when you are making these important decisions,” he says. The program, which is free to patients, is covered by funding from the Foundation for Informed Medical Decision Making at an estimated cost of $40 to $150 per patient.
Ms. Bianchi, who sought help to decide on breast-cancer treatment, says that before her first medical consultation at UCSF she and her husband talked with a coach on the phone for an hour and a half about issues of concern to them. She says when she started to cry, the coach remained calm and soothing, urging her to take her time. She decided not to watch the first video on surgery because she was too scared, and knew she didn’t want a mastectomy.
Where to Find More Information About Decision Making- Aids
The University of Ottawa Health Research Institute Comprehensive list of decision aids by topic http://decisionaid.ohri.ca/AZlist.html
National Cancer Institute Aid to help in breast cancer treatment choices http://www.cancer.gov/cancertopics/breast-cancer-surgery-choices
Mayo Clinic Decision Aids for breast cancer surgery and adjuvant therapy http://www.mayoclinic.com/health/mastectomy-lumpectomy/BC99999 http://www.mayoclinic.com/health/breast-cancer-treatment/AT99999
Health dialog Decision aid videos for prostate cancer screening, colon cancer screening, early state breast cancer treatment http://www.healthdialog.com
Ms. Bianchi opted for a less-aggressive treatment than her previous surgeon had recommended. After a mass in her left breast was removed, she had a single radiation treatment. Fortunately, the cancer hadn’t spread to her lymph nodes. But a test to determine the risk of recurrence was in a middle range, so she had a tougher call to make on the next step—deciding whether to have chemotherapy.
She and her husband watched a video on chemotherapy and hormone therapy. “It gave us this whole explanation of risk and benefit, and how you evaluate each of those for your own case, which wasn’t something we had really thought about clearly,” says Ms. Bianchi. Had she not watched it, she says she might not have asked the right questions or absorbed what her oncologist said about the chances of recurrence and survival with different treatments.
Ms. Bianchi chose not to get chemotherapy after watching patients in the video talk about the impact of “chemo brain,” the mental cloudiness known as cognitive dysfunction that can be an after effect. In a meeting, her oncologist confirmed that it does happen and might not go away. She says she turned to her husband and said, “That’s it. No chemo. Can’t do it.”
Ms. Bianchi, who is now on a form of hormone therapy to prevent recurrence, says the decision aids “offered a good combination of the cold hard facts and the reality of living through breast-cancer treatment.” She says she also appreciated the audio tapes that her coach made of doctor visits, which she and her husband listened to more than once together. “There were times for me during the consults when I would just blank out, because it was so overwhelming, and my husband was supportive but doesn’t process information quickly,” she says.
Thomas Stormont, a urologist and surgeon at Stillwater Medical Group in Stillwater, Minn., was skeptical at first when the group agreed to use the shared-decision-making aids provided by the Foundation for Informed Medical Decision Making as part of a demonstration project. Although the material is reviewed semi-annually for possible updating, Dr. Stormont felt the video and booklet on prostate cancer were incomplete. They didn’t cover some of the newer treatments, for instance, such as prostate cryoablation, the freezing of the prostate to treat localized cancer. “I thought it would be a waste of time, another barrier between me and the patient, and more literature I wasn’t in control of,” he says.
Dr. Stormont agreed to use the programs, but supplements them with his own literature that includes information on newer treatment options. He says he has found that the decision aids help patients and their spouses get better educated about early prostate cancer, so his time with them is “more relaxed, efficient and focused.”
Patients have more realistic expectations about their treatment and side effects and are less likely to seek out second opinions, he says. They also are more comfortable choosing less-invasive treatments after reviewing the decision aids, he says. “On one hand, while I am losing some surgical patients because of this process, on the other, we both are more comfortable that they are choosing the best treatment for them—one that they are more informed about, more comfortable with and less likely to regret later on,” he says.
Don Paulson, 74, a patient of Dr. Stormont, learned last week that he has prostate cancer, which he says came as a shock after years of good health. At an initial counseling session, oncology care coordinator Joyce Kramer went over the diagnosis and treatment options with him and his wife, Phyllis. She reassured the couple that the cancer was not life threatening and sent them home with a prostate-cancer DVD and some printed literature to view prior to a visit with Dr. Stormont over the weekend. “We had a chance to digest it rather than getting it all in one big chunk,” says Mr. Paulson.
After watching the video, Mr. Paulson says he felt he understood his options far better. He is now weighing whether to chose the implantation of radioactive seeds, or try the cryoablation described by Dr. Stormont, who performs the procedure. “If we had just gone straight to the doctor’s office and heard all of these options it would have been too much. It was good to be knowledgeable and review all of the possible side effects of different treatments first.”
Richard Derr, 75, also was recently diagnosed at Stillwater with prostate cancer. He says the decision aids helped him decide that both surgery and radiation carried risks of side effects that he wasn’t prepared to face, including incontinence and erectile dysfunction. Because his cancer was slow growing, he decided to go for an “active-surveillance” strategy, checking every few months for signs that the cancer is progressing.
Mr. Derr says he wished he’d had similar help last year when he was considering whether to have back surgery for a severe lower-back problem after unsuccessfully trying physical therapy and medications. Though his orthopedic surgeon told him there might be extensive rehabilitation, “he didn’t talk to me a lot about the risks,” Mr. Derr says. After the surgery, he began feeling numbness and tingling in his feet, a condition, known as neuropathy, that is a potential side effect after back surgery. “I’m not saying the surgery caused it, but no one ever mentioned it was a possible side effect,” Mr. Derr says. “If I had known that it was I might not have made the decision to have the surgery.”