Article from the Boston Globe’s On Call Magazine, April 2004
By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting
“Althea” is faced with a difficult choice. She has been diagnosed with a benign brain tumor that, while not life-threatening, affects her pituitary gland. This, in turn, causes a hormonal imbalance that Althea says makes her life miserable. Her treatment choices are to continue on medication or have surgery. She knows from experience that medication helps a little, but not a lot, and she’s been told it cannot alleviate all of her hormonal problems. On the other hand, she’s been told there is a 90 to 95 percent chance that surgery will cure her condition, but that chance comes with a 1 percent risk that she may die from the anesthesia or even the surgery itself. Needless to say, Althea is having a difficult time choosing between these two options.
Kate Clay, MA, BSN, program director of the Center for Shared Decision Making at the Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, and Floyd J. Fowler, PhD, president of the Foundation for Informed Medical Decision Making in Boston, have experience helping patients make tough choices like these. Clay works with patients by offering decision-support counseling, and Fowler produces videotapes that patients can watch to help them make informed, reasoned treatment choices.
This month, Clay and Fowler offer tools and tips you can use to help patients weigh their treatment options and make decisions they feel comfortable with.
Decision-support counseling, Clay explains, helps patients realign their expectations about risks and outcomes and move from unrealistic to realistic choices. Regardless of whether this counseling takes place in person or over the phone, health professionals serve as neutral third parties who guide patients through the decision-making process. When Clay counseled Althea, for example, she helped her look at the source of her decisional conflict. Through counseling, Althea realized that an outspoken family member was having an exceptionally large influence on her. Once aware of this dynamic, Althea could think more clearly about her treatment choices. See “How to Find Out More” for information about making this option available to patients.
Ottawa Personal Decision Guide
The Ottawa Personal Decision Guide (2004, University of Ottawa, Ottawa Health Research Institute) is an interactive tool designed to help people who face tough decisions. Available online at decisionaid.ohri.ca/decguide.html, patients can complete this guide on their own or use it in conjunction with decision-support counseling. The guide helps people identify their personal needs, plan their next step, track progress, and communicate their views to others involved in the decision.
Clay says one of the most important parts of this guide is the section on values clarification. People are asked to list the pros and cons for each option and assign a number that indicates its importance to them. “This is meant to represent a balance scale, and the visual has quite an impact,” says Clay.
Fowler appreciates how difficult decision-making can be. He says that making a decision is especially hard when “patients have no choice about making a choice.” To help, the Foundation for Informed Medical Decision Making, in conjunction with Health Dialog, produces and distributes videos that are used as decision-making aids. The goal of these videos is to help patients be informed and active decision makers. Based on up-to-date scientific evidence, these videos provide unbiased, balanced, and complete information. They not only are developed and reviewed by a panel of medical experts but also generate feedback from patients throughout the process.
Decision-aid videos are available on a wide range of topics including breast cancer, prostate cancer, coronary artery disease, advance directives, low back pain, osteoarthritis, and benign uterine conditions. Most are between 30 and 45 minutes long. Often, the videos have accompanying written materials that restate key messages and offer additional information about research findings, medications, and treatment options.
How Clinicians Can Help
Here are some ways you can help patients who are facing difficult and stressful choices.
- Appreciate that not everyone has a decisional conflict. Even when decisions are difficult, patients may not be conflicted about their choices. Clay recommends that clinicians assess each patient’s level of decisional conflict and then determine whether some form of support is needed or wanted.
- Present information in ways patients can understand. Beyond the treatment choices themselves, the concept of decision-making can be hard for patients to understand. For example, risk is not only an abstract and future-oriented concept but is also based on a lot of numbers. To help patients better understand, use words, terms, and examples they are familiar with. One way to help patients comprehend a choice is to use a metaphor that compares the new risk to others the patient may have faced in life.
- Acknowledge the importance of feelings and values. The decisions that patients make may be influenced as much by feelings and values as they are by facts. For example, some patients are uncomfortable with uncertainty and choose treatment options that have an assured outcome. Let patients know that emotions and values are important to consider when making important treatment decisions.
- Develop decision-making expertise. Admittedly, all health providers are not experts on decision making. Identify someone on your staff (you, perhaps) who is interested in this topic and willing to learn more. Once trained and knowledgeable, this person not only can counsel patients but may also serve as a resource and mentor for the rest of the staff.
- Build decision support into your practice. If your practice routinely presents patients with treatment options, you might want to create a system that automatically schedules patients for help with decision making. For example, if you work in a clinic that sees a lot of women who are newly diagnosed with early-stage breast cancer, you can schedule patients to see the relevant decision-making video either just before or after their medical appointment.
- Let patients know about decision-making resources. Provide patients with lists of resources to learn more. These resources can include: Web sites (several are suggested below); tools like the providers who offer decisional-support counseling either in person or over the phone; and consumer health libraries where patients can watch videos about making difficult medical decisions.
Althea took advantage of many of these resources. She called Clay several weeks after their counseling session and said that she made a treatment choice. She said she felt strong about this decision and it felt “like an enormous weight lifted off my shoulders.”
How to Find Out More
Kate Clay, MA, BSN, is the program director at the Center for Shared Decision Making at the Dartmouth-Hitchcock Medical Center in Lebanon, NH. You can contact her by phone at (603) 650-5578 and by e-mail at Sharedfirstname.lastname@example.org
The Foundation for Informed Medical Decision Making does not routinely provide tapes directly to the public. Instead, the Foundation’s decision aids are distributed by Health Dialog, which provides decision support through contracts with its health plans and employers. Programs are also available to patients at the Blum Patient and Family Learning Centers at Massachusetts General Hospital and the Dana Farber Cancer Institute, as well as the Center for Shared Decision Making at the Dartmouth-Hitchcock Medical Center.
On the Web:
- Collaborative Care.net at www.collaborativecare.net includes a link to order some of Health Dialog’s Shared Decision-Making video programs
- Dartmouth-Hitchcock Medical Center, Center for Shared Decision Making at www.hitchcock.org/dept/csdm
- Foundation for Informed Medical Decision Making at www.fimdm.org/index.html
- Health Dialog at www.healthdialog.com
- Ottawa Health Research Institute at decisionaid.ohri.ca/decguide.html