|When Craig Mann was diagnosed
with prostate cancer, UCLA’s novel
helped him, working closely with his
physicians, to make the choices he
felt were right for him.
Photo: Ann Johansson
Craig Mann was bewildered enough when he was diagnosed with prostate cancer late last year. The 54-year-old Lake Forest, California, man is a laboratory scientist who takes good care of himself, eating healthy foods and participating in marathons and triathlons. He was certainly unprepared to hear that he had cancer.
But the diagnosis was only the first blow. Mann was taken aback by the numerous treatment options doctors presented to him and by the differences among the opinions. A urologist recommended surgery. A radiation oncologist recommended radiation therapy. Each option has pros and cons. Mann’s primary-care physician suggested he consult with experts at UCLA. That’s when he encountered a novel program designed precisely for people like him who are standing at the crossroads of complex medical decisions. Before attending the consultation, Mann was advised to respond to a questionnaire to help him learn about prostate-cancer treatments and think through his choices.
“That was helpful for choosing what was important to me,” Mann says. “The survival statistics are really good for this cancer. But I was most concerned about quality-of-life issues. The survey was a way to think about everything and hone in on my priorities.” Shared decision making is a concept that is gaining traction in medicine, particularly in areas of healthcare, where patients are presented with more than one reasonable treatment option. The programs, which feature patient-education tools such as online surveys or videos, have several goals. One is to help people thoroughly understand their choices and assure them that they are making informed decisions. Another major objective is to curb healthcare costs by sometimes steering people away from expensive treatments that are unlikely to result in better health or improved patient satisfaction.
Ultimately, shared decision making cuts through biases and crystallizes important issues for both doctor and patient, says UCLA Vice Chair of Urology Christopher S. Saigal, MD ’94 (RES ’00, FEL ’01), MPH, who implemented his department’s shared-decisionmaking program in which Mann participated. “Shared decision making improves the decision-making processes for both parties,” he says. “It is a collaboration. The idea is not that the patient tells the doctor what to do — the doctor does have expertise and an opinion that has to be heard by the patient — but the patient is in charge of the decision. It’s his body.”
The time appears to be right for the emergence of formal shared-decision-making programs. The concept is written into the Affordable Care Act as an objective of good healthcare and has been promoted by major U.S. healthcare organizations, such as the Institute of Medicine, for more than a decade. “I’ve been doing this for 12 years, and the change has been astounding — especially in the last two or three years. It has become normalized,” says Catharine “Kate” Clay, director of shared-decisionmaking education and outreach for The Dartmouth Institute for Health Policy and Clinical Practice at Dartmouth’s Geisel School of Medicine in Hanover, New Hampshire. The institute has been a leader in promoting the concept. “People are no longer just giving lip service to it, and they’ve gotten over all of their objections about why it won’t work. Now people are saying we need to do this, and we need to get payors to pay for it.”
One might argue that doctors and patients should always strive to have productive conversations regarding treatment options. But, in reality, that’s not always so easy. Until just a few decades ago, not only did patients yield nearly all decision making to their doctors, but also they often were not even told all of the facts about their conditions.
“The idea that patients are equal partners in decision making is relatively recent in medicine,” says Dr. Saigal. For example, in the ’50s, it was considered ethical to withhold information that a patient had terminal cancer, he says. “Because treatments were limited, it was considered too cruel to fully inform a patient. We’ve come a long way from this paternalism since then.”
In the late 20th century, a patient-empowerment movement began that demanded shared decision making as a basic tenet of healthcare; however, that trend emerged at a time when physicians, faced with growing demands for healthcare and a surge in new tests and treatments, had less time than ever to spend in conversation with patients.
“At a time when patients wanted more and more information, doctors and healthcare systems were less and less able to respond to that,” says Tom Rosenthal, MD, chief medical officer for UCLA hospitals. “Shared decision making doesn’t replace the doctor-patient relationship. But in an era when doctors are, in fact, substantially more stretched for time, it is good to have tools to help them leverage their time with patients.”
Any physician can choose to adhere to the philosophy of shared decision making — and any patient can ask for it, Clay says. “One good physician who gets it can change his or her practice,” she says. “It is simply a matter of his or her style of talking with patients to make it collaborative instead of a one-way push.”
But some large medical institutions are finding the concept works best when a department establishes a protocol for offering decisionmaking aids. The tools can consist of computer questionnaires, interactive programs, downloadable apps, pamphlets or videos that are created specifically for this purpose. Group educational classes are another type of decision-making aid. Besides educating the patient, the tools clarify patient goals, values and objectives. Cultural and religious beliefs, the patient’s age, family support and even the patient’s financial resources are open for consideration in the decision-making process.
“Patients’ values and beliefs are very much part of the decision in this format,” says Dr. Saigal. “Those values, wherever they come from, differ among people. It’s amazing what a variety of beliefs there are about medical treatments and the value of their outcomes.”
|Surveys and online questionnaires help patients to think through the options they face and hone in on their
priorities to make informed decisions about their medical care.
Image: Courtesy of Dr. Christopher S. Saigal
In some cases, such as the urgent needs of someone having a heart attack, shared decision making is moot. But, in recent years, treatment options have exploded for many nonemergency conditions, and often there’s conflicting evidence about which treatments are superior, Dr. Saigal says. “Men with prostate cancer who have localized disease have three main options: surgery to remove the prostate, radiation to destroy prostatecancer cells or active surveillance — being carefully watched to see if the cancer is going to get worse,” he says. “These are very different options with very different side-effect profiles.”
For example, surgery for prostate cancer is associated with a risk of urinary or sexual dysfunction; active surveillance of the cancer doesn’t carry those risks but is associated with a somewhat shorter life expectancy for younger men with aggressive cancer. UCLA’s Department of Urology began offering a shared-decisionmaking tool for men with prostate cancer in 2013. Department staff plug in data about the patient’s diagnosis, such as the “aggressiveness” score of the tumor, test results, age, race and other medical conditions — all things that could affect the treatment decision. After the patient completes a 15-minute survey regarding his preferences, the resulting report is sent to the doctor ahead of the scheduled consultation, during which the physician and patient meet to discuss the options.
“The report says, taking into consideration the evidence and who you are clinically and what your preferences are, here’s the best match for you to discuss with your doctor, here’s the next-best match and so on,” Dr. Saigal says. “The patient walks into the office knowing all of the options. Then he can move on to have a more-informed, in-depth discussion with his doctor.”
Reproductive health is another area where decision aids are particularly useful. Aparna Sridhar, MD (FEL ’13), MPH, assistant clinical professor in UCLA’s Department of Obstetrics and Gynecology, recently launched an iPad app that she developed during her fellowship at UCLA to help women make more-informed choices about birth-control methods. The free app, called Plan A Birth Control, takes women through the lengthy and complex list of reversible contraceptive methods, pointing out the pros and cons of each and how they work.
|Assistant Clinical Professor of Obstetrics and Gynecology Dr. Aparna Sridhar developed the Plan A Birth Control
app while a fellow at UCLA to help women make more-informed choices about birth-control methods.
Images: Courtesy of Dr. Aparna Sridhar
Birth control is a perfect area for a shareddecision- making aid because more than a dozen methods and numerous factors go into choosing contraceptives — medical history, personal health characteristics, lifestyle factors, future pregnancy plans and financial resources. Moreover, significant public misconceptions abound about various methods, she says.
“My passion is family planning and birth control,” Dr. Sridhar explains. “I want my patients to have a tool that they can use and to which I feel comfortable referring them. I want them to use the app and be able to say ‘okay, maybe this is actually what I want.’ This is an adjunct to the patient-physician encounter. It’s to give them basic knowledge before they come to me.”
Preliminary research showed the app is well-received by patients, although they still appreciate talking to someone in person about their choices. Dr. Sridhar hopes to eventually offer the app in a kiosk in the clinic, so patients can use it prior to their appointments.
An even-more-elaborate shared-decisionmaking program is underway at UCLA for patients with painful chronic conditions, such as hip or knee arthritis, spinal stenosis or herniated disc, in which treatment choices are complex and highly individualized. UCLA is one of 20 participants in a national study on shared decision making called the High Value Healthcare Collaborative. Funded by the national Centers for Medicare and Medicaid Services (CMS) and led by the research team at Dartmouth, the study is a rigorous test of the potential benefits of shared decision making. “We’re focusing on preference-sensitive decisions,” says Associate Professor of Medicine O. Kenrik Duru, MD (FEL ’03), who is participating in the UCLA arm of the study. “In the case of advanced knee arthritis, a knee replacement won’t extend life and it involves surgery and rehabilitation. Would you rather manage your pain with conservative care or go with joint replacement? That is patient preference.” Study participants watch a video that was produced for the study. The video depicts actual patients who discuss their condition and how they arrived at their various choices. The video describes treatment options and the pros and cons of each. After watching the video, patients participate in a 45-minute-telephone or in-person discussion with a health coach who helps them distill the information.
“We make it very clear to our patients that we are coming from a neutral, unbiased stance, and we are here to support our patients,” says Stephanie Ackerman, a health coach in Dr. Duru’s office. “Our sole objective is to help them make the best decisions for themselves through information and analyzing various demographics that matter to them — income, support, etc.”
Issues arise that perhaps wouldn’t have come to light without the program, she notes. One patient, who looked to be a good candidate for surgery based on medical data alone, was actually terrified of anesthesia and feared surgery. Another patient, also a potential candidate for surgery, had no one to assist him at home. Those patients ended up feeling more comfortable with a nonsurgical pain-management treatment plan. “Without that background information, patients and physicians may not have a common understanding of what is the best option,” Ackerman says.
After the session, the health coach enters notes in the patient’s file to inform the physician of which treatment option the patient is leaning toward. But no decision is made until the doctor and patient confer. “The goal is really to provide the care that patients feel is best for them and to make sure that they fully understand the pros and cons of their options,” Dr. Duru says. There’s a phrase that sums up the intent of the program, he adds: “No decision about me without me.”
Donald Perry, 66, recently participated in the program after he sought care for severe back pain linked to spinal stenosis. He and his wife Jeanette watched the video in the office and discussed the information with Ackerman. The process helped Perry decide on a nonsurgical approach — epidural anti-inflammatory injections, physical therapy and acupuncture — instead of opting for immediate surgery.
“That was one of the better things that I’ve done since I’ve been having the back problems,” Perry says about the program. “It clarified the options I had and basically let me know what is involved with the surgery.”
The video and counseling made his visit with his physician extremely productive, Perry says. “I can talk to the doctor on a different level now because of the things I learned from the video and from Stephanie. I feel a lot more comfortable now about what to do.”
UCLA joined the high value healthcare collaborative last year and hopes to enroll about 500 people in the program. The study grew out of observations by Dartmouth researchers that rates of certain kinds of discretionary procedures, such as knee-replacement surgery, Cesarean sections and surgery for benign prostatic hyperplasia, varied widely around the country. “The Dartmouth people’s idea was that if you informed patients about procedures in a structured kind of way — taking out the variability between the way one surgeon described it compared to the way another surgeon described it — you might get more-uniform rates of patients electing to undergo that kind of procedure,” says Dr. Rosenthal, a founding member of the High Value Healthcare Collaborative. “They discovered the rates of patients electing to undergo these procedures would go down. They called this shared decision making.”
A report published earlier this year by The Cochrane Collaboration, an international not-forprofit organization that focuses on disseminating accurate information about healthcare interventions, found strong evidence that decision aids improve people’s knowledge about their options and promote more-active decision making. “The biggest impact is that patients who have gone through a shareddecision- making process and are exposed to a decision aid are much-better informed and engaged in their care,” Clay says.
While doctor and patient satisfaction is a primary goal of shared decision making, there is keen interest in whether or not such programs lower healthcare costs by reducing the number of people who undergo elective surgeries in favor of less-costly options that can result in good outcomes. A 2012 study in the journal Health Affairs looked at the impact of decision aids among patients considering hip and knee surgery. Researchers, from the University of Washington, found decision aids were associated with 26 percent fewer hip-replacement surgeries and 38 percent fewer knee-replacement surgeries.
Another study, published earlier this year in BMJ Open, polled U.S. physicians and found that two-thirds were very enthusiastic about using shared decision making to lower healthcare costs.
“Shared decision making is one of many initiatives and innovations that the healthcare system is undertaking to grapple with the challenge that society is positing to us, which is to figure out ways to reduce cost while not reducing quality,” Dr. Rosenthal says. “This is not a panacea for healthcare costs. But it’s likely to be an important component of it. And it’s almost certainly the right thing to do, informing patients in a systematic way.”
Craig Mann agrees. After completing the survey and discussing the alternatives with his fiancée, he met with Mark S. Litwin, MD (FEL ’93), MPH, chair of the Department of Urology, to discuss the options. “We talked it over, and I decided to choose surgery,” Mann says. “The doctor has the bigger picture and is going to know more than anyone else. The whole process helped me think about everything and decide on my priorities and make the choice that was right for me.”
Shari Roan writes regularly about healthcare and medicine.