What Do ‘Engaged’ Patients Do?

(Seattle Municipal Archives: Flickr)

(Seattle Municipal Archives: Flickr)

Desiree Basila was 52 when her stage zero breast cancer — also called ductal carcinoma in situ —  was diagnosed. While her cancer was found very early, she was ultimately diagnosed with the disease in both breasts. In addition, it was found in several locations. For Basila, doctors said her only realistic treatment option was double mastectomy — which Basila opposed. “If I die at 75 instead of 95 I think I can live with that,” she told me recently. “I did not really want to have a double mastectomy.”

Basila is strong evidence that individuals react differently to their treatment choices. The new healthcare buzzword is the engaged patient, generally referring to someone who is collaborating with doctors in the decision-making process and, conversely, where a patient’s individual preferences are respected.

Basila became just such an engaged patient. After a cancer diagnosis, people usually have a few weeks to investigate treatment options, options that may be life altering. While Basila had little prior experience with cancer, she had been a science teacher and put her skills to use, digging into the research. She sought a second opinion at UC San Francisco and discovered a new research trial which appealed to her. Instead of double mastectomy, she enrolled in a trial on “Active Surveillance” of her slow-growing cancer. As part of the trial, she would go in twice a year for mammograms and she also received MRI images of her breasts once a year. “If it starts showing signs of aggression we can catch it and start more treatment at that point,” she said.

In addition to the trial, Basila had support from the Decision Services group at UCSF. There, a newly-diagnosed cancer patient can elect to work with specially trained interns. These interns are often recent college graduates on their way to medical school or other health professions. They help patients find and review accurate information, determine their priorities, and create lists of questions. An intern may also accompany a patient as a note taker during medical appointments.

Such strategies have been been shown to improve patients’ understanding of their cancer as well as their sense of engagement in their care.  In a pilot program, [PDF] nine out of ten patients felt that the list of questions, concerns and expectations contributed to a more productive appointment with their doctor. Both patients and physicians reported satisfaction with these techniques.

But this decision support was available only to a fraction of the nation’s cancer patients until earlier this summer, when the Open to Options program was launched by the Cancer Support Community. This new program was inspired by UCSF’s decision-support service, and its counselors were trained by Professor Jeffrey Belkora, Director of Decision Services for the UCSF Breast Care Center.

The nonprofit Cancer Support Community (CSC) has a network of 150 locations across the country. The Open to Options program adds a toll-free phone number and other engagement tools to dramatically expand the reach of the services.

The new program targets patients who are “newly diagnosed, facing recurrence or at some other point during their survivorship when they’re faced with making decisions,” Belkora said. “After diagnosis but before treatment is a very vulnerable time for people. … They’re overloaded and overwhelmed.”

Meanwhile, it’s been five years since the self-described “risk-tolerant” Basila made her own decision. She admits her background in science made her diagnosis somewhat less confusing for her. After collaborating with decision-support interns, Basila said she felt she could “ask the right questions and give real thought to the answers. … I didn’t want my decision to be a reaction to fear.” Although she lives with an “ongoing process” of decision, she hasn’t wavered for the past five years. Her early stage breast cancer has not progressed and she is “thrilled” with her choice.

Active surveillance is common in prostate cancer but considered experimental for breast cancer. The outcome, while under study, is unknown. “Every one of us,” Basila said, “has to decide what will be our quality vs. quantity of life.”

This blog has been updated to remove estimates of how many people might be served by the new service.

Eve Harris is a Bay Area health writer. Check out her blog, A Healthy Piece of My Mind.

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  • http://twitter.com/foundhealth FoundHealth

    Decision Services…What a great concept. Great for the patients, great for the pre-med students to gain valuable experience. Wish I had known about this program when I was developing my med application! The engaged patient is undoubtedly the future of the healthcare system, and I wouldn’t have it any other way! Great Article, thanks Eve!

  • Suze

    This would have totally changed my treatment plan 3 years ago…. Instead out of fear I had a lumpectomy, lymph node removal and radiation…. None of which I necessarily needed.

    • Eve Harris

      Suze, I hope your treatment didn’t leave lasting damage. It is very difficult for most of us to live with uncertainty, especially when the consequences seem so threatening. Thanks for writing.

    • Desiree

      My hope for all patients is that they not have to make decisions from a place of fear. No matter what the specifics of the decision are, it should be a decision made from a place of understanding. Carol, I am so glad your hospital had a Navigator. Although our health care system is frought with all manner of dysfunction, patients can provide the leadership to change it by being engaged in their care.

  • Carol Countryman

    This article really spoke to me as I received almost the same diagnosis two weeks ago. The differences are I am 70, this is my second such diagnosis (Stage One), and my cancer is a secondary one resulting from a copious amount of radiation therapy 40 years ago – the gift that truly keeps on giving. I underwent a mastectomy in 1985 and lost no time in asking the surgeon for a second one two weeks ago. I don’t expect to live another 25 years, but I have no desire to spend any time at all wondering what’s going on in my breast. That part of my appearance is of almost no concern to me. I also have learned that in addition to health care being ruled by the insurance industry, it is guided by the “not me” principle. I thought my longtime internist would give me the okay for surgery, but she wanted me to see a cardiologist. He said okay, but then I discovered I have to go back to my internist who will – I fervently hope – say I’m good to go. I’m glad I only have cancer and not an aneurysm. I should add that my hospital, Rochester General, has a Clinical Breast Navigator on staff who can guide and support patients through their breast cancer journey. The hospital also has such a Navigator for Prostate and Colorectal cancer patients. Thank you for sharing your story, Desiree, and may all your tests be negative!

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