Bedside matters: New residency helps nurses untangle ethical knots
by debra bradley ruder; photographs by gary wayne gilbert
Massachusetts General Hospital (MGH) is a place of daily life and death decisions, and nurses witness them all.
Take the man in his 40s, a father of young children, who was admitted after suffering a massive stroke. Although his eyes remained open, he had significant brain damage and couldn’t talk. His family wanted to try a feeding tube, but his wife—his health care proxy—felt that would go against his wishes to live an independent life.
“It was challenging for everybody,” recalls Yassaman Khalili, a clinical nurse specialist on the unit who, with MGH staff nurse Linda Gorham Ryan ’78, helped family members and clinicians resolve their differences over the feeding tube, fluid levels, and other treatment choices. While providing the patient with comfort care, they supported his disconsolate relatives by encouraging them to pray and listen to music, soothing their way as they said goodbye. The man died comfortably a few weeks later with his wife beside him.
“His wife stayed true to the wishes he had expressed months earlier,” says Ryan. “And our team delivered dignified patient care, as he would have wanted.”
Fraught scenarios in critical care settings are part and parcel of 21st century medicine, as rapid advances allow people to live longer, and patients, families, and health care providers confront ethical questions about life-sustaining treatment, quality of life, informed consent, and surrogate decision making. From their vantage point at the bedside, nurses often witness contentious family dynamics and high-intensity disputes between patients (or their surrogates) and clinicians. At large urban teaching hospitals like Mass General that serve a diverse and critically ill population, linguistic, religious, or cultural differences can exacerbate discord and dilemmas over morally complex issues.
Unlike Ryan and Khalili in this case, not all nurses feel they are in a position to intervene as easily on behalf of their patients. And that can cause considerable ethical and moral distress. “Nurses, on the whole, have a good sense of what’s right for a patient, but not necessarily the confidence or language to say, ‘Here’s what we need to do about it,’ or ‘Here’s who we need to talk to,’’’ says Connell School Associate Professor Pamela Grace. That is why Grace, along with colleagues at the Connell School, MGH, and Brigham and Women’s Hospital (both Harvard teaching hospitals), has developed the Clinical Ethics Residency for Nurses (CERN), a nine-month program of classes, role-plays, and on-the-job mentoring that aims to strengthen RNs’ ability to help anticipate, identify, and resolve ethical dilemmas.
CERN was established partly in response to results of a 2009 survey of 750-plus registered nurses at Mass General, 64 percent of whom said they had encountered a disturbing, ethically charged situation for which they felt they lacked skills and training during the previous year. The study revealed four sets of circumstances that frequently cause nurses distress: disagreements among health care team members about end-of-life decisions; conflicts between families and providers over courses of treatment; angry and distraught relatives; and family members (typically adult children) who ask nurses to withhold pain medication from patients.
Most of the problems nurses confront are not new, says Grace. But today’s high-stakes, fast-paced health care environments have made them more complicated. Even experienced, well-trained nurses sometimes don’t feel comfortable—or don’t have a platform from which to speak up. Or they may not know where to get the help and support they need to untangle ethical knots, she notes.
Ryan and Khalili, who took the brand-new course last year, say they’ve become better arbiters and advocates in situations like that of the stroke patient. Ryan, a staff nurse for more than 30 years, says she is now more likely to assert her expertise when she believes, for example, that a patient already on pain meds for a chronic condition needs more pain relief while recovering from surgery.
Project director Ellen Robinson, M.S. ’83, Ph.D. ’97, clinical nurse specialist in ethics at MGH, says nurses who are frustrated with their ability to solve problems run the risk of distancing themselves from patients or leaving the field. And with the country facing a looming nursing shortage, retention is a major concern. CERN’s developers hope the program will benefit not just individual nurses, patients, and families, but the profession as a whole.
CERN grew out of collaboration between Robinson, Grace, and Martha Jurchak, Ph.D. ’96, who overlapped with Robinson at the Connell School and is now executive director of the Ethics Service at BWH. With then-Dana-Farber Cancer Institute nurse Elizabeth Tracy, they launched a series of one day clinical ethics conferences that ran for five years—during which time they realized nurses were hungry for more in-depth training. (The 2007 conference was held at Boston College.) Supported by a grant to MGH from the U.S. Department of Health and Human Services Division of Nursing, they inaugurated CERN in October 2010.
Over three years, the CERN team—which also includes MGH Clinical Pastoral Education Director Rev. Angelika Zollfrank and MGH nurse scientist Susan Lee, Ph.D. ’05—plans to train more than 50 staff and advance-practice nurses at MGH and BWH. This year’s group has 23 RNs (another dozen were turned away because the course was full). Three doctorally prepared nursing educators will also go through CERN training.
Simulations are a mainstay of the 98-hour residency. Held in a special observation lab at Mass General, they allow participants to enact roles of the health care team and family members, to get a sense of others’ motivations and interests, and to sharpen their own communication and empathy skills. CERN is also building a cadre of ethics-savvy nurses including Ryan and Khalili, who now lead regular Ethics Rounds on their unit. (See related story.)
During her 25 years as a critical care nurse, Grace felt she had no one to talk to about ethical problems. “Nurses were not allowed to request ethics consults, and many physicians didn’t want to,” she remembers. “I know many nurses would like to improve their ability to speak up on behalf of patient-care needs, but the resources remain inconsistent.” CERN offers a remedy.