Deborah Tolmach Sugerman

Shared decision making is a collaborative process for building relationships between patients and providers, using both scientific evidence and the patient’s values and preferences to make decisions about care. While by no means a new idea, it has had some difficulty gaining traction. A recent editorial in the 

 noted that “A sleeper provision of the Affordable Care Act (ACA) encourages greater use of shared decision making in healthcare.”

Among the benefits of shared decision making:

•	The process itself involves a dialogue with your provider, giving you the opportunity to ask questions. You can ask about your prognosis—if you want to know.

•	It will help you get accurate information and ensure that you know the risks and benefits of treatment options. This is especially helpful if there is more than one approach, without one that is clearly superior.

•	It will allow you to share your values with your provider. You might want the most aggressive treatment possible, or your quality of life during treatment may be more important to you. This decision should be yours, not your doctor’s.

•	In the long run, it will reduce the cost of healthcare. Studies have shown that some people choose more conservative and therefore less-expensive options, and that the overall savings could be substantial.

To help guide the conversation, researchers have developed what are called “patient decision aids.” Created with patient input, they are well-validated and exist for cardiovascular disease, osteoporosis, diabetes, statin use and prostate cancer, among other conditions. Although fewer have been developed for other cancers, decision support interventions such as question prompt lists and recording of conversations have been found similarly effective. A useful tool is available from the Agency for Healthcare Research and Quality (

effectivehealthcare.ahrq.gov/index.cfm/options/tool

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Shared decision-making is a collaborative process for building relationships between patients and providers.

On the Web: Shared Decision-Making

It has been 10 years since Julie Brown-Price learned she had breast cancer. Her diagnosis and treatment included a needle biopsy and lumpectomy, followed by a mastectomy, chemotherapy and radiation—a 15-month ordeal. Brown-Price, who was 47 at the time of her diagnosis, credits her positive relationship with her Minneapolis oncologist, Gail Bender, with helping her navigate the challenges of treatment. Their “therapeutic alliance” strengthened their bond, one that can positively affect the cancer experience in a number of ways.

For example, a recent study of young adults with cancer found that those who had a strong alliance with their oncologist had a greater sense of social support and less illness-related grief. The study also found that patients with a strong bond to their oncologist were more willing to adhere to treatment and more often took their oral medication.

Brown-Price’s alliance with Bender enabled her to feel safe discussing integrative therapies, such as nutritional supplements and acupuncture. “I had complete trust in her,” Brown-Price says. Her oncologist’s attitude helped, she says, because it gave her the sense that “we will deal with this together.”

Without question, cancer can upend a life. “Cancer isn’t like a bone fracture,” says Christian Boukaram, a radiation oncologist and professor of medicine University of Montreal. “It’s multisystemic and so much more complex.”

Boukaram, a member of the Society for Integrative Oncology and author of 

, explains that any illness is likely to cause stress, but cancer can affect a person’s social, emotional and financial well-being—in addition to physical health. A strong therapeutic alliance can help patients accept the severity of the illness, improve quality of life and increase treatment satisfaction.

The perceived bond with the oncologist is extremely powerful. Patients seem to have a strong wish for the doctor to see them as more than a disease.”

A particular challenge for oncologists is dealing with patients who have difficulty with treatment adherence, including taking oral medication as prescribed, making needed dietary and lifestyle changes, and keeping medical appointments. The challenge is compounded by inefficiency in the system and an increasing demand for oncology services. This can lead to more physicians who see patients at a frenetic pace, limiting the amount of time they spend with them and making it difficult to communicate effectively. A 2009 meta-analysis revealed “a 19 percent higher risk of non-adherence among patients whose physician communicates poorly than among patients whose physician communicates well.”

Conclusions from a 2013 survey conducted by the Blue Shield of California Foundation also confirmed the power of a strong therapeutic alliance. The survey, which identified components of patient satisfaction among low-income state residents, found that successful communication between patients and providers produced a “wide range of positive outcomes, including bolstering patients’ satisfaction, trust in medical professionals, confidence and engagement in care decisions.” Ultimately, the study organizers found there were few key outcomes that were not affected by patients’ “perceived bonds with their providers.”

Boukaram says an important aspect of the therapeutic alliance is nonverbal communication. In an effort to “read between the lines,” he says, he observes whether a patient is fidgeting, interrupting or relying on someone else to answer—all are cues for him to dig a little deeper.

Effective questioning can also reveal gaps in information or even a misunderstanding about disease progression or treatment protocol. Bender says that at each visit, before patients leave the office, she makes sure to ask the same question in three different ways: “Do you have any questions? Is there anything else we should talk about? Are we set?”

Brown-Price found that Bender’s office staff also made it easy for her to adhere to her treatment. “Before you left the appointment, they made all the next appointments for you,” she recalls. “I was nervous about the ‘brain fog’ from chemo and whether I would need to take care of appointment changes, but the office took care of all that.”

Moreover, Bender knew that Brown-Price’s cancer would affect the entire family. “She told us she needed to have a meeting with all of us to let us know what was coming,” Brown-Price says.

Holly Prigerson, a professor of sociology in medicine at the Weill Cornell Medical College in New York, has researched the therapeutic alliance at the end of life but says her findings are relevant to all stages of treatment.

“The perceived bond with the oncologist is extremely powerful,” Prigerson says. “Patients should be given permission to talk. They should be asked, ‘How are you and your family coping?’ Patients seem to have a strong wish for the doctor to see them as more than a disease. This one shift, to discussing informally how the patient and family are doing, might change the whole dynamic.”

Many cancer patients want to know their prognosis, Prigerson says. If the doctor has information and the patient doesn’t—called “information asymmetry”&mdash;how can the patient be an equal partner and make informed choices? One way to address this issue is through “shared decision-making.”

Brown-Price’s experience holds lessons for how patients can feel empowered even when overwhelmed with their diagnoses. Don’t hesitate to seek a second opinion, she says. After an initial meeting with a local Minneapolis oncologist, Brown-Price chose to travel to MD Anderson Cancer Center in Houston. When she returned to Minneapolis and the first oncologist was dismissive to the point of laughing at her, she knew it was time to find a different doctor.

That’s when she found Bender, who, by contrast, welcomed her input and agreed to modify her chemotherapy schedule according to MD Anderson’s research.

Today, Brown-Price says she has just one wish for anyone facing a cancer diagnosis: “I hope everyone can find a Gail.”

A strong therapeutic alliance between cancer patients and oncologists has numerous benefits.

Power Couple: Doctor and Patient Communication

According to an Institute of Medicine report, people with cancer, like people with other chronic conditions, can play a major role in managing their illness—and “information, empowerment and other support” can help them do so more successfully. Many hospitals provide resources, but if they don’t, Christian Boukaram, a radiation oncologist and professor of medicine at the University of Montreal, suggests trying online support available from numerous groups, including the American Cancer Society. Minneapolis oncologist Gail Bender suggests the following tips as “homework” during treatment. These steps can lead to more time for useful and meaningful interaction&mdash;and potentially a better therapeutic alliance.

Patients might consider keeping a notebook. 

Between visits, they can write down any questions that arise. They can then bring the notebook to the next appointment. Bringing a friend or relative might be helpful as well.

Patients should understand their medications

 and the reasons for taking them. If something is unclear, they should ask. It could be beneficial to make a list of their medications and note how they are working prior to an appointment. In addition, they should check their refill status and ask for new ones as needed.

Patients should discuss any worrisome symptoms.

 For example, the oncologist might go through a long list of symptoms but not ask about diarrhea. If the patient has diarrhea, it’s important for the patient to tell the oncologist. Keeping a log can help.

 and succinct as possible when answering a doctor’s questions—and vice versa. The fewer detours in the narrative, the better.

People with cancer can play a major role in managing their illness.

Action Items for Patients

There's nothing quite as mouthwatering as a rich, savory tomato sauce topping off fresh pasta—unless it’s that quintessentially American summer treat, a slice of ice-cold watermelon. Though the foods differ, they share their cheerful red hue thanks to lycopene, a carotenoid pigment.

Carotenoids are the fat-soluble pigments found in numerous red, orange and yellow fruits and vegetables, some of which the body uses to make vitamin A. While the lycopene found in apricots, guavas and papayas is likely less familiar (and not a source of vitamin A), proponents say it, too, has major health benefits. And research suggests that lycopene’s effectiveness is boosted if eaten with fat because it dissolves better in fat than in water and is thus more easily absorbed by the body.

“If a chemist could make a lycopene derivative that was more potent, and still safe, that could be very useful.” — MICHAEL SPORN

Lycopene is thought to potentially lower the risk of heart disease, stroke and macular degeneration. However, the pigment’s potential to prevent and treat certain cancers has generated great interest.

On the cellular level, lycopene, like all carotenoids, has well-established antioxidant properties. Additionally, laboratory studies of prostate cancer cells have shown that lycopene promotes apoptosis (programmed cell death), interferes with cell proliferation, inhibits the expression of androgen (male hormone) receptors, and possibly affects the insulin-like growth factor 1 (IGF-1) receptor signaling pathways. (Higher-than-normal levels of IGF-1 could lead to increased cancer risk.) But what does this mean outside the laboratory?

“The epidemiologic [observational] studies tend to suggest that high consumption of lycopene or a high blood level of lycopene is associated with a lower risk of prostate cancer,” says Edward Giovannucci, a professor of nutrition and epidemiology at Harvard School of Public Health in Boston.

However, these studies need to be interpreted with caution, because numerous factors can affect outcomes, including weight, diet and geographic settings. And the Food and Drug Administration (FDA) has found no credible evidence to support an association between lycopene intake and reduced risk of cancer.

Moreover, epidemiologic studies don’t tell the whole story; interventional studies are also necessary. For instance, it is possible that those who consume more lycopene also have other lifestyle habits that account for their lower cancer risk, pointing to a need for further studies.

Still, Giovannucci says epidemiologic and interventional studies are very different and not comparable, and that “in the era of widespread PSA screening, many prostate cancers that are diagnosed are indolent and at a relatively early stage. Thus, the potential beneficial influence of lycopene has been diluted.”

Lycopene supplements are generally regarded as safe, but, like all nutritional supplements, lycopene is not regulated by the FDA, and quality and consistency among brands varies.

Whether in foods or supplements, lycopene is not very potent, according to Michael Sporn, a professor of medicine at Dartmouth College’s Geisel School of Medicine in Hanover, N.H. “So one would need to eat a huge number of tomatoes or ingest something like a gram a day of pure lycopene in order for it to be clinically useful. We have no information about the safety of giving such a high dose to people.”

The bottom line: “Lycopene itself is simply not potent enough as a cancer-preventive agent to justify further clinical trials,” Sporn says.

“If a chemist could make a lycopene derivative that was more potent, and still safe, that could be very useful,” Sporn adds. “But that’s a long-term research project, and certainly not applicable to people in the short term.”

Perhaps one dietary component might not make much of a difference, but a combination of micronutrients could.

Lycopene has health benefits, but whether it prevents cancer has not been confirmed.

Deborah Tolmach Sugerman

On the Web: Shared Decision-Making

Power Couple: Doctor and Patient Communication

Action Items for Patients

Confirmation of Lycopene's Benefits Remains Elusive

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