Reprinted with permission from the Newsletter of the Cancer Resource Centers of Mendocino County, Issue No. 10, Spring 2004 (pdf link)
SHARED DECISION MAKING
by Dr. Jeff Belkora, Director of Decision Services, University of California, San Francisco
Until recently doctors made most of the decisions about cancer care. Over the last few decades, however, several trends have coincided to challenge this paternalistic model of medical decision making.
The first of these trends is the rise of consumer advocacy in healthcare, leading to greater patient participation in medical decisions. Laypeople have awakened to what management scientists call the agency problem: people acting in your behalf may not always act in your interest. Delegating decisions to anyone, even health care professionals with good intentions, is risky simply because their values may be different from yours.
The second trend involves medical ethics. The doctrine of informed consent is yielding to a doctrine of informed choice. Health care professionals are beginning to recognize that in most cases respecting patient autonomy means helping patients weigh information and make trade-offs that doctors used to make unilaterally.
The third trend is economic. Researchers have documented that patients who are involved in their own treatment decisions consume fewer resources than patients who are treated paternalistically.
These three trends challenge paternalism. What should replace it? Most patients cannot make health care decisions alone, for medicine is a complex, fast changing field. So a new field of shared decision making proposes that patients and physicians should negotiate roles and responsibilities with respect to decision-making, coming to an agreement on treatment in a medical consultation. As a graduate student, I became intrigued with how patients and physicians approach the medical consultation, and how we might redesign their approaches to facilitate shared decision making.
At the Cancer Center at UC Medical Center in San Francisco (UCSF), where I serve as Director of Decision Services, we are using a program called Consultation Planning and Recording (CP&R). The essence of CP&R is that one of our trained peer navigators helps a newly diagnosed patient participate actively in treatment decisions. Here is how it works. First, we meet the patient just prior to a consultation with a surgeon or an oncologist. Using a decision making checklist, we prompt the patient to think of questions or concerns that need to be addressed before making decisions about treatment. We type up the resulting Consultation Plan (or list of questions and concerns) and print it out for the patient to use as an agenda for the upcoming doctor’s appointment.
Ideally, we then accompany the patient to the consultation and take notes, making sure that the doctor addresses all of the points in the Consultation Plan. For each point we write down the doctor’s comments so that after the visit we are able to print out a Consultation Record that summarizes all of the questions and answers.
CP&R was born in the mid-1990s at the Community Breast Health Project (CBHP) of Palo Alto, with staff from Stanford and UCSF helping the process along. A few years later CBHP alumni Ellen Mahoney and Joyce Gilbertson moved to Humboldt and Mendocino counties respectively and became actively involved in their areas’ cancer organizations. Between 1999 and 2002 the Cancer Resource Center of Mendocino County and its counterpart in Humboldt County sent staff and volunteers to a half-dozen UCSF training sessions.
Staff and volunteers from both organizations are now highly productive Consultation Planners and Recorders (CPers). To date, they have administered over 200 Consultation Plans, with high satisfaction rates from patients. In fact, the Mendocino and Humboldt resource centers have through their participation and feedback played an important role in the development and evolution of CP&R over the last few years. The next step is to evaluate the effectiveness of CP&R. Our cooperative group, henceforth known as Mendocino-Humboldt-UCSF or MHU (pronounced “moo”), has applied for a grant from the California Breast Cancer Research Program to fund a study of the efficacy of the CP&R process in rural communities.
At UCSF we have evaluated CP&R under ideal conditions, where we control every aspect of the study. Now we are interested in testing it in a community setting, where researchers will not seek as much control over study parameters. We want to see how it fares in the “real world.”
We expect the Mendocino and Humboldt communities to benefit significantly from this research. First, the attention we will bring to medical decision-making will highlight the right of every patient to participate in treatment decisions. Even more importantly, our research will create an evidence base on the positive impact of CP&R on the quality of patient decisions and health outcomes, inviting increased participation in our program from members of the medical community who want to know about the data behind our intervention before referring their patients. Over the years we have seen the value of CP&R at UCSF in helping our clients become their own best medical advocates. The Mendocino-Humboldt-UCSF partnership provides the perfect opportunity for determining its effectiveness with underserved patients in a rural clinical setting.