Sharing a Difficult Decision

The Center for Shared Decision-Making helps guide newly diagnosed cancer patients through the difficulties of making hard medical choices

When a patient first walks into Martha Travis-Cook's cozy and quiet office, they're often in a state of shock.

Focus article photo

Susan Berg, MS, CGC, helps coach patients who come to the Center for Shared Decision-Making.

Usually, they've been referred to Martha, who is a senior clinical secretary in the Center for Shared Decision-Making at Dartmouth-Hitchcock Medical Center, by a DHMC doctor—often an oncologist. Sometimes, Martha meets a patient just hours after they've received terrible news: they have cancer.

"For most patients newly diagnosed with breast cancer, everything else just goes away," she says. "There's just one word in the world: cancer. And they're overwhelmed by it."

Martha has seen up close the wide range of emotions and questions that new cancer patients struggle with, from senior citizens wondering whether they should endure a difficult and painful treatment at their age, to young mothers who ask—usually through tears—"How do I tell my children?"

A Key Tool: Decision Aids

Behind Martha's desk are several shelves groaning under the weight of hundreds of copies of what are called Decision Aids. These are small, highly informative spiral-bound booklets put together by Health Dialog and the Informed Medical Decisions Foundation that describe treatment options for various kinds of diagnoses, from early-stage breast cancer to knee-replacement surgery. A DVD is included with each booklet, and patients and their families are encouraged to spend as much time as they need reviewing the Decision Aid for their diagnosis and thinking about the various choices. Each patient is also given a two-part questionnaire to complete before and after they have viewed the DVD and/or booklet.

"A significant number of the Decision Aids I loan out come from requests from our Comprehensive Breast Cancer Program," says Martha. "It's a devastating diagnosis, and the treatment options all have benefits and risks that women with this diagnosis should be made aware of so they can make an informed decision about their treatment.

The Early-Stage Breast Cancer Decision Aid is subtitled "Choosing Your Surgery," and the booklet includes descriptive information about breast cancer and surgery choices as well as guidance on what questions to ask the doctor, how to compare the various treatment options, seeking a second opinion, and how to make the best individual choice, plus a glossary of terms and much other important information. "The Decision Aid does not tell you what to do," Martha emphasizes. "It provides information needed to help you make the decision about what to do."

In addition to providing Decision Aids, the Center also offers decision coaching to help patients understand the treatment options available to them and guide them through a decision process so the patient feels more confident about their choice. The decision coaching is done by the Center's Interim Director, Susan Berg, MS, CGC. Cancer patients are also made aware of the many resources available to them at DHMC and Norris Cotton Cancer Center.

On many occasions Martha has suggested to patients that they "stay off the Web because they are so overwhelmed by the myriad of information. Some of the information on the Web is worst-case-scenarios, and it can really scare new patients with information that may not be relevant to their particular diagnosis." However, the Center will provide interested patients and families with a list of recommended medical websites that was created by the Medical Library Association.

Empowering Patients with Cancer

The Center for Shared Decision-Making at DHMC is one of the first programs of its kind in the United States, and grew out of efforts back in the 1990s to empower patients. In today's health care environment, patients want to feel like they are part of the decision-making regarding their treatment. People are less willing to completely hand over such important decisions to someone else, even a doctor. Martha notes that some patients and their families want to take full control of the decision about treatment; others prefer to let their doctor make the decision. However, most choose to share the decision-making process with their provider and family. "It's a different process for each patient and family," she says.

The other important function of the Center is to introduce patients and families to the many patient resources available at DHMC and the Cancer Center, from social workers to financial advisors to dieticians to massage therapists to counseling such as that offered by the Familial Cancer Program. "There is an enormous group of people here at DHMC ready to help," Martha advises patients. "Use us."

April 09, 2012