Sharing Decisions, Caring Moments

Fine tuning tools

“Medicine is complex and a hospital can be a frightening and intimidating place for patients,” adds Sandra Kaus, PFACQS co-chair and former patient. “The council is working in many ways to demystify hospitalization, and the tools we use to communicate with patients is an important place to begin the process,” she explains. “The council is a platform that enables us to be the voice of the patient and improve their experience from the moment they step through our doors.”

Revamping the Patient Handbook began with a brainstorming session in which council members voiced concerns and questions — a plethora of suggestions that was then handed over to the working group.

Read pens in hand, “we went through every word on every page,” says Kaus. “We took it apart, reordered the sections, removed repetition of information and simplified the language. We clarified important phone numbers, added TV channel listings, and offered up ways to improve the map so it could really help guide people through the buildings. ”

“We added diversity in the photos of patients and added tabs so that patients and families could easily find what they needed,” adds Ostrup. “Sandra and I were like ‘right side, left side’ of a single brain!”

Devil in the details

When they completed the overhaul, the booklet went back to the full council for review, and on to Marketing for publication. Then the group tackled the Preparing for Surgery booklet with the same attention to detail.

These projects are step one in a broad range of issues related to communication that the PFACQS hopes to tackle. The spoken word — and silences — between patients, families, and the care team are even more powerful. “We believe our job is to help build bridges so that we can all recognize and respect the differences between us, understand the real impact of every interaction we have with one another — and work to improve the quality of the patient experience,” Kaus adds.

Mapping the emergency experience

“The architects wanted to ensure that they had patient and family feedback during the design process,” says Nicole Duncan, assistant vice president of advocacy and international services. ”The pavilion will house the ED, ICU, and surgery — areas that can pose real issues for patients and caregivers.”

During the mapping experience, the council members were divided into small groups and given two scenarios to ponder: Envision moment by moment what patients experience when they enter the emergency department either as a walk-in or by ambulance.

“What we discovered was the large effect small things have on the quality of the patient experience,” says Kaus. “The distance from the garage to the ED, the lack of patient privacy, and access to food during a long wait for care — even not having a phone charger handy — create stress during an already stressful time,” she says. “The exercise allowed us to say ‘what if,’ and ‘what’s best for customers.’ There were some real light bulb moments.”

“It’s a chance to identify some of the gaps in service that the hospital may not know it has,” says Coffee, whose son was just two months old when he had a liver transplant at MedStar Georgetown. “They are saying, ‘we want to hear your story, we want to see things as you see them.’ And they are asking ‘what would be your ideal hospital experience?’ We also realize that the clinicians have their own stories too, and that we are all part of the health care team.”

The group talked about everything from confusing discharge orders and long transfers between the ED and patient units — to dark and scary garages. “We heard from many perspectives and no ideas were discounted,” says Ostrup.

Respect and value

“The council is a diverse group — finance people, lawyers, clinicians, parents, patients — and this spectrum of people is very valuable in everything we do,” says Coffee. “The whole experience is near and dear to me. I speak for my son, but also for increasing an understanding of what makes quality care. It’s the human side of medicine that recognizes in health care, ‘you respect and value my opinion as much as I value your advice.’”

“The mapping experience is just the beginning of a process the architects are implementing before the brick and mortar of the new patient care building are set,” explains Duncan. “They will continue to solicit the council’s input, and they are not only embedding their ideas into the design, but we are also incorporating them now into existing space.”

MedStar Georgetown model

“More recently, MedSun has wanted to increase patient engagement in their process and they reached out to us for our input,” explains Yasmin Yusuf, MHA, Center for Patient Safety.

Janet Camp, a representative of MedSun, was invited to a PFACQS meeting, introduced council members to MedSun’s work, heard first-hand the stories of community members — and watched the group in action.

“She was very impressed and invited us to make a presentation at a MedSun meeting to talk about the development of our PFACQS and our accomplishments,” recalls Mary Herold, BSN, RN, risk management. “She also asked Sandra Kaus to tell the group her personal story.”

Heart and soul in care

Kaus’s own late diagnosis of breast cancer put her on the road as a patient advocate and “change agent.” As the community co-chair of PFACQS, she is intent on making hospital care a “hopeful experience” for patients, families and the health care team. “I want to put the heart and soul into this effort.”

Kaus spoke with honesty and humor to an enraptured and hushed audience at the FDA. “I talked about every aspect of my diagnosis and treatment — the biopsy, the awkward breast MRIs that leave you dangling upside down in the air for more than 35 minutes,” she says. “I could literally hear some in the audience groan,” Kaus says laughing.

The presentation — and Kaus’s persuasive storytelling—touched the participants. They understood how significant the patient perspective is to their efforts to improve care — and are now interested in creating their own patient engagement group.

“Mary and I were invited to come back to speak to a group and take them through our process, to tell them how we formed a PFACQS, what we have accomplished and where we are headed,” says Yusuf. “They are using our council as the model — we’re teaching them how to engage patients in their efforts, how to hear their voices — and how to empower and educate patients, families, and health care professionals from across the country.”

Training health care professionals-in-training

In the massive litany of facts that engulf medical students during four years of training, creating a culture of safety in patient care can get lost. But increasingly the value of open and honest patient-physician communication to reducing medical error is establishing a strong foothold in education. At MedStar Georgetown, PFACQS members and fourth-year medical students Sam McAleese and Katherine Koniares are helping to bring this message to the nearly 1,000 health care professionals-in-training at Georgetown University School of Medicine.

Raising interest, expectations

“My role in the council is to bring the student perspective to our mission — and to introduce our work to fellow students,” McAleese says. “Our short-term goal is to raise awareness–having Katherine and me present at council events is helping to peak student interest.”

McAlvee’s own interest peaked when he embarked on a MedStar Heath system-wide research project the summer after his freshman year. “I spent 10-weeks collecting data to examine the challenge sepsis poses in MedStar Health hospitals. It was an assessment to determine how we respond to the hospital-based infection — and in what ways we can standardize and improve protocols across-the-board,” he explains. The experience convinced McAleese of the value of team-based care and open communication between patients, providers, residents, and students in the process.

“From the educational point of view, I think we do it well here,” he says. “We have classes that focus on patient and physician communication with panels and interaction with hospital patients, and an immersion day for students that focuses on how patient safety issues can occur when there is a breakdown in communication. Still we know we can do more — and as a council member that’s my hope.”

Reinforcing safety, teamwork

As Koniares begins her own immersion into the world of labor and delivery during her fourth year clerkship she is mindful of the lessons she has learned during the last year. “Everything I’ve been thinking about and studying will be put into practice every day,” she says.

The issues of patient safety became very real to Koniares as she was completing her medical school project — a research study to “assess the level of teamwork and the perceived culture of patient safety as viewed by health care personnel in different units of MedStar Georgetown.”

Koniares’ results reinforced her gut feelings about the hospital: In all units, a majority of associates feel they support one another, work together as a team to get the job done and feel free to voice concerns if they suspect something is wrong.

This past summer, Koniares was invited to attend the MedStar Academy for Emerging Leaders in Patient Safety for medical and nursing students in Colorado — an international initiative founded by David Mayer, MD.

“It was four days of rich discussion about communication, safety and quality in health care,” Koniares explains. “I’m now part of a growing alumni of the camp who are working to spread the idea of safety in health care,” she adds. “I think that it is important to begin this training early on and keep re-enforcing the notion throughout our careers as physicians,” Koniares says.