When Michelle Fineberg received the news that her 3-year-old daughter, Sarah, had been diagnosed with leukemia, she was overwhelmed. "I was in shock and couldn't think," Fineberg says. "But my doctor told me not to panic, and explained step by step what I needed to do. She took me by the hand and said, 'I'll get you through this.'" Sarah's doctor, Elizabeth Rider, MD, MSW, is a pediatrician at Roslindale Pediatric Associates and assistant in Medicine at Children's Hospital Boston. "Throughout the whole process, Dr. Rider interpreted all the information from the various doctors, she listened with us and cried with us," says Michelle. "She was our life line."
In 2002, Robert Truog, MD, and Elaine Meyer, PhD, RN, along with Jeffrey Burns, MD, MPH, chief of Critical Care, set out to understand the inpatient version of Michelle's experience. They interviewed parents of patients who had been in the intensive care unit (ICU) years after their children's hospitalizations. "What they consistently told us was that they forgot virtually all of the medical details," says Meyer. "What they remember is the way people spoke to them and treated them. Sometimes they felt reassured or comforted. Other times, they describe bad experiences they struggle with and can't get out of their minds." To further explore these issues, Truog and Meyer, with the help of David Browning, MSW, BCD, began offering a series of one-day educational workshops, called the Program to Enhance Relational and Communication Skills (PERCS). The success of their efforts led, in March 2007, to the establishment of the Institute for Professionalism and Ethical Practice (IPEP). Truog is director of the new institute, Meyer is associate director and Browning serves as senior scholar. Rider recently joined the group as director of faculty development.
The institute's mission is "to promote relational learning for health care professionals that integrates patient and family perspectives, professionalism and the everyday ethics of clinical practice." The initial focus of PERCS was on preparing clinicians for challenging end-of-life conversations in pediatric and neonatal intensive care settings.
The institute's current programs have expanded to examine a broad range of difficult conversations, such as obtaining informed consent prior to surgery, assisting parents during invasive procedures and resuscitation, and intervening with patients and families in the aftermath of medical error. Institute leaders are coordinating their efforts with other hospital initiatives to promote effective communication using SBAR (situation, background, assessment and recommendation) and other strategies.
The IPEP founders are intent on understanding how clinicians come to learn the communication skills and relational capacities that people like Michelle Feinberg are looking for in their health care providers. They believe these capacities are best learned from the inside out, rather than the outside in. "We begin with how to establish a human-to-human connection," says Truog. "Once you do that, everything flows naturally. We don't focus on words or phrases; if you memorize a script, parents can tell it's rehearsed." Instead, participants are encouraged to actively listen to patients and their parents by being mindful and present rather than rushing them through a protocol. Then comes the hard part: live enactments. In the critical care program, for example, an interdisciplinary group of clinicians is invited to practice sharing bad news with a patient and family members, who are portrayed by actors. Faculty facilitators set up a scenario, such as a young child's near-drowning, then videotape the encounter between the clinicians and the parent-actors, while team members observe from a separate room on closed-circuit TV.
When the enactment ends, clinicians review the conversation with their fellow learners, the actors and the IPEP faculty, which includes psychosocial professionals, physicians and parents of children with life-threatening conditions. The group discusses key aspects of the conversation, including body language, tone of voice, timing and choice of words. In addition, they investigate the moral and ethical dynamics of these complex and demanding interactions. "We want to get inside the conversation by asking learners, 'What is this family member struggling with?' or 'How might I share the moral burden of this parent's decision?' says Browning. There's another goal as well. "We hope they will be remember what brought them into this work to begin with," says Meyer.
Evaluative data from 600 participants points to a promising future for the new institute. Learners report feeling better prepared, more confident, better attuned to their innate capacities and more appreciative of the importance of cross-disciplinary dialogue and knowledge-sharing. An impressive 99 percent of participants say they would recommend it to their colleagues. "Just having the opportunity to practice this type of conversation was invaluable," said one clinician. "We have so few opportunities to do that, and when we do, it's usually in an actual crisis situation." Another said, "What I learned is that one doesn't have to have all the answers—one has to be genuine and real."
The measurement that matters most to IPEP founders, however, is embedded in the unique relationship established between clinicians like Elizabeth Rider and the patients and family members they serve. "With really bad news, families worry we will abandon them," says Rider. "They need to know that regardless of the outcome, we are in it together." For Feinberg, Rider's commitment and steadfastness made all the difference. In this instance, a frightening diagnosis was followed in time by some very good news. Sarah completed treatment for her leukemia 10 months ago and is a happy, healthy 6-year-old. "When Sarah went into remission," Fineberg remembers, "Dr. Rider called up and said, 'We made it!'"
Click to read narratives describing two Children's participants' experiences at PERCS workshops.
For more information about the institue and its programs, go to www.ipepweb.org