Patient and Family-Centered Care Evolving at BWH

Karen Hanrahan, BS, RN, a clinical staff nurse on Shapiro 8, was caring for a patient who was in and out of consciousness on a morphine drip in October. One night this patient, who was scheduled for transfer to a hospice, became lucid and began chatting and sharing family memories with her.

“Do you want me to call your daughter?” Hanrahan asked.

Even though it was 10:30 at night, Hanrahan called this patient’s daughter and suggested it would be “a good time” for her to come in and speak with him. Both the man’s daughter and son arrived by 11 p.m., and they spent the next few hours together, and the family was present when their father passed at approximately 2 a.m.

“I just felt it was important, and I’m grateful it worked out that they were able to come in,” Hanrahan said.

Her intuition to connect this patient and his family is just one of the many examples of how nurses like Hanrahan skillfully read patient situations in order to deliver patient and family centered care across BWH. During the last few years, the hospital formally launched a patient and family centered care steering committee, a Patient and Family Advisory Committee and several pilot efforts to further inform these efforts.

“We are committed to partnering with our patients and families to ensure patients receive excellent care,” said Senior Vice President for Patient Care Services and Chief Nursing Officer Mairead Hickey, PhD, RN, who co-chairs the steering committee with Chief Medical Officer Andy Whittemore, MD. “Our patients, their family members and our care providers collaborate to identify priorities and choices for care.”

Patient and family centered care is based on four core concepts:

Dignity and Respect: Providers include individual’s preferences, culture, capacity and abilities in determining care;

Information sharing: Communication is open, timely, complete and understandable;

Participation in care and decision making: Family presence allows involvement, practice and learning;

Collaboration in policy, program development and design: Patient and family advisement at all levels of operations and care delivery.

Nationally, there has been growing recognition of the benefits that patient- and family-centered care offers health care providers as they address quality and patient safety issues. In March, BWH and other Boston hospitals are sponsoring the Institute for Family-Centered Care four-day seminar with interdisciplinary teams expected from 65 hospitals and health care systems from across the country. This seminar provides a forum to showcase innovations in health care and introduce new ideas and emerging best practices to support patients and families while receiving care.

Engaging BWH Staff

At BWH, the Patient and Family-Centered Care steering committee set out to establish a formal hospital policy to articulate a BWH philosophy statement (see page 2) on patient and family-centered care to identify core elements for family presence and to begin to shape implementation efforts. Pilot efforts in the NICU, Cardiovascular Services and Oncology are underway, and BWH launched its Patient and Family Advisory Council last year.

With the support of Hickey, Whittemore and Michael Gustafson, MD, MBA, senior vice president for Clinical Excellence, Kathleen Gordon, director of Patient/Family Relations, and Dorothy Goulart, MS, RN, director of Performance Improvement in the Center for Clinical Excellence, attended a seminar at the Institute for Family Centered Care and worked with the steering committee to lead efforts at BWH.

“Four years ago, first steps called for engaging hundreds of staff from all clinical areas and disciplines in the hospital in focus groups to discuss patient and family centered care,” said Goulart.

Gordon added, “We started off by asking staff if they could think of an experience they had that could be considered an example of patient and family-centered care, and everyone had examples.”

Responses include stories about family members remaining in the room or at the bedside during a code response, teaching families how to manage dressings and drains, encouraging families to bring in patient’s favorite music, pictures or food to help them eat, connecting families with the clinical team to have regular updates on the patient’s plan of care and even arranging for a cot to be brought into a private room.

Staff raised concerns, too, about family presence. First, would it interfere with their delivery of care? Second, are families going to be watching for mistakes? With family members around all the time, would they be “under foot?”

As patient and family centered care efforts were put in practice in the NICU and the Shapiro Cardiovascular Center, where patient rooms include a family zone for overnight stays, it was clear that family members are mainly interested in their loved one’s recovery.

Some situations or families may be challenging. In the case of a challenging bedside procedure, knowing the patient and family makes it easier to offer supportive alternatives. Developing the skill and comfort level to offer options to family members based on knowing the patient and family’s particular need takes ongoing learning and skill development for nurses. Colleagues from Patient/Family Relations, Chaplaincy or Social Work also are available.

Service Line Efforts

In 2006, the NICU established the Parent Advisory Group (PAG) comprised of former NICU parents and NICU staff. The mission of the PAG is to incorporate the vision and voice of former NICU parents into the NICU care environment.

Feedback from parents in the NICU led to a change in visiting hours and created an opportunity for parent presence during clinical rounds. “Prior to the change, parents were asked to leave during rounds, which created lengthy periods of separation for parents and babies,” said Marianne Cummings, MS, RN, nurse manager in the NICU. Now parents are welcomed into the NICU 24 hours a day.

Additionally, reflections from the PAG have influenced the development of a NICU based lactation service, the creation of a parent-to-parent support network and the complete revision of the Parent Handbook. 

The PAG meets 10 times a year. It is BWH’s first service line family-centered care council. Additional plans are in place to build on the work of the NICU and the Dana-Farber. Dana-Farber’s long-standing family council is helping shape a similar group to guide inpatient Oncology staff in the Tower, and Neurosciences staff are laying the groundwork for its own local council.

Hospital-wide Advisory Group

BWH’s Patient and Family-Centered Care Advisory Group, which reports to the BWH Care Improvement Council, began meeting last year. It brings leadership and clinical staff together in partnership with patients and family members to create an environment of patient and family-centered care across the entire institution and provide feedback regarding patient and family centered care efforts. The Patient and Family-Centered Care Advisory Group will oversee the interpretation and implementation of the Patient and Family Centered-Care Philosophy.

Long-term goals call for the group to advise on several elements of patient and family-centered care at BWH. It will provide a forum for discussion on infrastructure necessary to create patient and family-centered care, help identify opportunities for improving the patient and family experience and advise on policies and practices to support patient and family-centered care. The group also will recommend how to evaluate the evolution of patient and family-centered care.