Skip to contents
In This Issue:
When Paul Walsh suddenly suffered three heart attacks, four strokes and slipped into a coma in 2010, his wife Jenifer was “blindsided” with feelings of shock, helplessness and fear.
She waited for five hours in the Shapiro Cardiovascular Center ninth floor family waiting area while he was in the Cardiac Catheterization Lab, hoping for an update on his condition. When she didn’t hear anything, she assumed the worst – that he had died. “Finally, a nurse arrived to tell us that he had some of the best surgeons helping him, that he was on a ventricular assist device and that it was touch and go,” Walsh recalled. “What a relief to learn he was still alive, even though it was just barely.”
Paul Walsh received care for seven weeks in the Shapiro Cardiovascular Center, describing what he can remember of it as “an extremely frightening time.” He has since recovered, and he and Jenifer are now partnering with BWH as members of the Cardiovascular Patient and Family Advisory Council.
The Walshes and their fellow council members are helping to improve care for future patients and families by sharing reflections on their own experiences, including what made the care outstanding and what could be improved. The Cardiovascular Patient and Family Advisory Group is one of 14 areas in the hospital where patients and family members are working side-by-side with staff in various ways, including through advisory councils and in other capacities.
Through this partnership, they are helping to improve the patient and family experience and carry out BWH’s philosophy of providing the highest quality patient- and family-centered care.
“When you include patients and family members as advisors to our clinical, education and research areas, you begin to realize that you need the voice of patients in everything we seek to accomplish,” said Maureen Fagan, executive director of the Center for Patients and Families, which includes Patient and Family Relations, the Kessler Library and the coordination and management of all of the councils. “They bring a perspective that can be invisible to staff. Dr. Don Berwick (former head of the Institute for Healthcare Improvement) has said, ‘Nothing about me without me,’ which is an important reminder about including patients.”
On April 23, five members of the Cardiovascular Patient and Family Advisory Council participated in a Nursing Grand Rounds panel discussion, reflecting on their hospital experiences in front of a standing-room-only crowd in the Shapiro Porch.
“We speak out of gratitude and in support of our caregivers and to help make the care experience even better for those who come after us,” said Martie Carnie, a patient and co-chair of the BWH Patient and Family Advisory Council, who moderated the event.
The reflections of the council members sparked a dialogue with staff in the audience. When Walsh described her experience awaiting news of her husband, she suggested that someone could find a way to reach out to family members in similar situations to update them. Marion Stout, a unit coordinator in the audience, stood up and said she could keep tabs on family members in the waiting area and help them track down information.
“This is an example of the kind of outcomes and improvements we can make in having this dialogue between patients and staff,” said Fagan. “We have real opportunities to learn.”
Equally powerful were the stories council members shared about what made their experience positive. Heart transplant recipient Michael Coughlin spoke about the many ways his nurses cared for him as a whole person: bringing him a mini refrigerator and fresh garden vegetables from home, sharing laughs over a television program one night, and even moving up a Cath Lab appointment so he could watch the Boston Marathon. “I never felt like I was alone because I knew my nurses were on my side,” said Coughlin, who remained in Shapiro for three months while waiting for a heart. “They really cared about my wife, Gretchen, and me.”
Tommy Smith, who received a heart transplant in 2010, recalled the time that one of his nurses, Mary Lou Powers, RN, called to check up on him while she was on vacation. “That’s something I’ll never forget,” he said. “I’ve been on every floor in Shapiro, from the penthouse to the Cath Lab, and every nurse I’ve met has been tremendous.”
Coughlin agreed. “In my third life—because you gave me a second one—I want to be a nurse,” he said. “I want to be able to go home from work and say, ‘I helped somebody today when they needed it the most.’”