Beyond Bedside Manner

The new Institute for Professionalism and Applied Ethics at Children’s Hospital Boston is helping doctors develop their skills in communicating bad news and assisting family members who are facing difficult decisions. The institute grew out of a collaboration between the hospital and EDC’s Center for Applied Ethics.

Initially, the institute’s workshops, led by EDC’s Dave Browning and Children’s faculty members Elaine Meyer and Bob Truog, focused on end-of-life communication in pediatric departments. The programs have now expanded to include high-stakes conversations in adult medicine. Participants role-play their skills with actors who portray patients and family members. Teams observe from a separate room, then discuss body language, word choice, and the degree of “human connectedness.”

Says Browning, “This is exciting. The new institute will enable us to share our brand of practice-based learning throughout the Boston area and across the country as well.”

All in the Family

Remarkable advances in medicine have illuminated the genetic component of diseases, such as diabetes and some types of cancer, giving many patients a leg up on prevention and treatment. But patients have many reasons for not sharing with their family a diagnosis or the results of a screening test, ranging from lack of understanding to estrangement from family members.

For example, a woman who learns she has diabetes is counseled by her doctor to tell her adult children about the diagnosis. When she does not do so, the doctor is faced with a possible conflict: the patient’s right to privacy versus the need for her children to know about their own risk so they can take steps to lessen the impact.

“A conflict exists between the confidentiality of the patient—which would be violated by sharing information with a patient’s family—and whether the health care provider’s obligation to prevent foreseeable harm extends beyond the patient to the family,” says EDC’s Debbie Sellers.

Sellers and Nancy Press of Oregon Health and Science University are leading a three-year study to examine the potential conflict between confidentiality and preventing harm. The survey will be given to members of the general public, health care providers (including genetic counselors who regularly deal with these types of issues), and patients and family members who have actual experience in dealing with a genetic disorder.

The study is funded by the National Institutes of Health.