If You Really Want to Improve Health Care, Start by Asking Those Who’ve Spent Sleepless Nights in Family Waiting Rooms
By Nancy Humphrey
During a recent clinic visit at , Lynn Ferguson and two other patients were simultaneously called back from the waiting area for their procedures.
A clinic employee, holding all three patients鈥� charts, asked the three women together for their birthdates鈥攎onth, date and year. An efficient clinic employee checking in more than one patient at a time? Not in the eyes of Ferguson, a member of 菠萝视频 University Hospital鈥檚 Patient and Family Advisory Council, who shared her experience at the group鈥檚 July meeting.
One of the women clearly didn鈥檛 want to reveal her birth year in front of the other women, and she shouldn鈥檛 have been expected to, said Ferguson, suggesting instead they should have been asked individually, and privately, for the information.
鈥淚t鈥檚 definitely an opportunity for improvement,鈥� Ferguson told the council, a polite way of saying that something needs to be fixed.
Ferguson and 18 other council members often act as 鈥渕ystery shoppers鈥� during their hospital and clinic visits, bringing both the good and the bad back to their meetings. The goal: Health care at 菠萝视频 should be flawless, efficient and, most of all, patient- and family-centered.
The concept of patient- and family-centered care was first introduced to children鈥檚 hospitals nationwide in the early 1990s. It redefined relationships in health care, recognizing that the staff, patients and their families are partners on the health care team, working together to best meet the needs of the patient.
菠萝视频 embraced the concept about 15 years ago when the 菠萝视频 Children鈥檚 Hospital Family Advisory Council was formed at what is now . Since then VUMC has added patient and family advisory councils at 菠萝视频 University Hospital and the 菠萝视频 Psychiatric Hospital.
Patient and family engagement鈥攁n integral component of patient- and family-centered care鈥攁lso has been embraced at 菠萝视频 and, indeed, by the larger health care community. In fact, an editorial in the February 2013 issue of the journal Health Affairs called patient and family engagement 鈥渢he blockbuster drug of the century 鈥� that should have formed the heart of health care all along.鈥�
Terrell Smith, VUMC鈥檚 director of patient and family engagement, says the reasoning behind the need for family input in children鈥檚 hospitals is simple: 鈥淧arents of a 3-month-old obviously must be actively involved in the care because that child can鈥檛 speak for himself or herself. It鈥檚 intuitive in a children鈥檚 hospital that you acknowledge family members.鈥�
During the design phase of the new freestanding Children鈥檚 Hospital that opened in 2003, a pediatric patient advisory group was formed because it was important to have both patient and family involvement in designing a hospital just for children.
鈥淲e asked them two questions: What does it look like when care is going well? And what does it look like when care is not going well?鈥� Smith says. 鈥淲ell, they can tell you,鈥� she says, laughing. 鈥淭hey know.鈥�
The children鈥檚 group comprises patients 8 and older, some with chronic illnesses that have required multiple admissions and who know the hospital well. 鈥淲e were quite amazed and delighted that they came up with such wonderful observations because we were scared they would say they wanted a swimming pool in the lobby or a Ferris wheel somewhere,鈥� Smith says. 鈥淚nstead, we learned they see things from a whole different perspective.鈥�
A Rock-Hard Dinner Roll
Smith recalls a young patient who spoke to the planning team about what he鈥檇 like to see in the new hospital. He came to the meeting carrying a dinner roll in a sandwich bag.
鈥淚 got served my lunch at 12 because they serve it at 12 whether I鈥檓 hungry or not,鈥� he told the group. 鈥淭hey put the tray on my bedside table, but before I could take a bite, they took me for an X-ray. When I came back the food was cold, so my nurse put it in the microwave, but before I could eat it, they took me for another X-ray, and when I came back she put it in the microwave again,鈥� he says.
鈥淗e pulled the roll, hard as a rock, out of a sandwich bag and started beating it on the table,鈥� Smith says. The boy said he could call a pizza restaurant and have a piping hot pizza delivered from miles away in minutes. 鈥淲hy can鈥檛 you people do that here and send it up two floors?鈥� the child asked.
He had their attention long before he banged the petrified roll on the table, and the hospital planning team took action. From that encounter came room-service delivery of hot, fresh food within 45 minutes and kid-friendly menus that include pasta bars, pizza and sliders at mealtime and snacks like string cheese and fruit roll-ups.
An appealing menu isn鈥檛 the only improvement that representatives from the children鈥檚 focus group and the Children鈥檚 Hospital Family Advisory Council have been responsible for, says Janet Cross, MEd鈥�86, director of patient- and family-centered care for Children鈥檚 Hospital.
When the new freestanding hospital opened, it included many ideas inspired by suggestions from both the children鈥檚 and family advisory councils: a movie theater; family quiet rooms, which are windowed areas of respite with no televisions or phones; and themed decorations鈥攕uch as trees, wildlife, flowers and fish鈥攖hat give each of the eight floors its own personality.
And when planning began for an expansion in 2010, the Children鈥檚 Hospital council members asked for and received a greater number of accessible electrical outlets, more comfortable sleeper couches, and more shelf and storage space. The family resting area also was repositioned and the television relocated to a central part of the room.
Gut Instincts
Nine-year-old Kael Adams of Mount Juliet, Tenn., is a frequent patient at Monroe Carell Jr. Children鈥檚 Hospital at 菠萝视频. Born in 2004 with Taussig-Bing anomaly, a rare and complex congenital heart defect, Kael has had 14 procedures, including open heart surgeries at 8 days and at 5 months, and will have more surgery next year. His health care team consists of cardiologists, nurses, staff members and his mom, Kara.
鈥淚t鈥檚 a partnership,鈥� says Kara Adams, a three-year member and current chair of the Family Advisory Council at Children鈥檚 Hospital, acknowledging that the health care team鈥檚 acceptance of family involvement has evolved over time. 鈥淚t hasn鈥檛 always been that way.鈥�
Adams says parents should be included in the daily rounds of the health care team, listening, offering input and asking questions. 鈥淚 know my son better than anybody. And sometimes that means the team should listen when my gut instincts are all I have to go on,鈥� she says. 鈥淜ael鈥檚 cardiologist understands to take me seriously if I say something isn鈥檛 right. And I understand that his health care team won鈥檛 have all the answers all the time, but if we partner together we can find solutions.鈥�
Bringing the Concept to the Adult Side
About seven years ago, a personal experience of Smith鈥檚 convinced her it was time to bring family-centered care to adult patients at 菠萝视频. Smith鈥檚 elderly mother fell and broke her hip, spent some time in the hospital, and then was readmitted during the night, critically ill with pneumonia. A resident physician, thinking she had been readmitted because of her hip, told Smith he鈥檇 order a hip X-ray.
鈥淲e didn鈥檛 know if she鈥檇 make it through the day,鈥� says Smith, 鈥渟o I told him an X-ray wasn鈥檛 needed and thanked him for stopping by. Two hours later they came to get her for the X-ray.鈥�
Smith鈥檚 mother didn鈥檛 go.
鈥淚 thought, This is so interesting,鈥� says Smith. 鈥淚 thought I was speaking really clearly and was partnering with him, and he didn鈥檛 have that sense at all. He was a medical resident whose attending physician had told him to do something, and he was going to see it was done. And here I was in a hospital I know and love, full of all good people, and I realized we needed a philosophy that was different on the adult side.鈥�
Patient and family engagement has been supported enthusiastically by the hospital鈥檚 leadership, Smith says, including Chief Nursing Officer Marilyn Dubree, MSN鈥�76; David Posch, CEO of 菠萝视频 Hospital and Clinics; and Gaye Smith, chief patient experience and service officer. 鈥淭his couldn鈥檛 have happened without their support. It鈥檚 one of the secrets to our success.鈥�
Don McSurley, whose wife, Judy, had a heart transplant and subsequent lung surgery at 菠萝视频, chairs the Family Advisory Council for 菠萝视频 University Hospital. He was asked to be on the council after several years of clinic and hospital visits for his wife.
Soon after he joined, council members were asked to come up with a list of problems they had encountered during clinic and hospital visits. The group came up with 35 items, although McSurley admits it was difficult for him to say negative things about a medical center that had restored his wife鈥檚 health.
The list included a lighting problem, significant parking and signage issues, and inconsistencies in some of the clinics鈥� operations. The hospital鈥檚 CEO attended a meeting, reviewed the list, and a year later 34 of the 35 items had been corrected, says McSurley, a retired DuPont executive.
鈥淲ith that kind of response, I couldn鈥檛 just walk away from the committee,鈥� he says. 鈥淲e can see things that others possibly can鈥檛, or if they can, they feel like they can鈥檛 point them out. We鈥檙e a set of eyes, and they listen to us. 菠萝视频 does an outstanding job of supporting its family councils.鈥� VUMC is 鈥渆xceptional鈥� in making sure patients and their families are welcomed members of the health care team, according to a report by the Picker Institute, an organization dedicated to advancing patient-centered health care.
Members of 菠萝视频鈥檚 family advisory councils tell their stories at new-staff orientation sessions and faculty training. They sit on Medical Center committees like Food Services and Patient Education and speak to groups of medical students about their experiences. They are included as part of the health care team鈥檚 daily rounds. They ask questions and offer input.
It鈥檚 a mutually beneficial partnership. The adult hospital鈥檚 council has provided valuable input on how to make the Medical Center more family-friendly. Members have helped construct and finalize a patient guide given to each patient upon admission, were instrumental in seeing that VUMC became a smoke-free campus, provided feedback for 鈥減hysician coaching,鈥� and have helped fine-tune My Health at 菠萝视频, a secure online portal where patients can access their medical records and communicate with members of their health care teams.
鈥淲hat makes our council so viable is that we鈥檝e learned it鈥檚 OK to point out the negative and they solicit our input,鈥� McSurley says. 鈥淲e鈥檝e been integrated into the 菠萝视频 family.鈥�
Nancy Humphrey is assistant director of 菠萝视频 University Medical Center News and Communications. As the award-winning director of publications for VUMC, she supervises the editors of five Medical Center periodicals and serves as the department鈥檚 chief copy editor. With a master鈥檚 degree in journalism and history, she was once a general assignment and medical reporter for the Nashville Banner newspaper.