December 8, 2016

Trust me, I’m the patient

When empathy is the best medicine.

Barbara Spangler visited her aunt often. The elderly woman’s health was failing dramatically, and during one visit, it became clear she was nearing the end of her life. Spangler knew she needed to do something — quickly.

The ambulance arrived, and 3 EMTs got to work — focusing on the task at hand and preparing to transport their patient.

“My aunt was surrounded by strangers and a lot of clinical activity,” said Spangler. “She was confused and scared, so I asked the EMTs to wait a minute.”

Spangler took out her phone and pulled up a favorite picture taken during her most recent visit with her aunt. In the photo, her aunt was wearing a peach-colored outfit and pearls. She had just had her hair done. On her face was a beatific smile.

Spangler held the phone up, sharing the image with the ambulance crew. “This is my aunt,” she said. “Right now, she’s sick. But this photo? This is where we were just 6 weeks ago. Please be gentle.”

The change in the demeanor of the EMTs was immediate.

“They were so surprised,” said Spangler. “One even made the connection to his own grandmother and how he loved her smile.”

“End of life is one of those topics that a lot of people avoid,” she said. “But when you do talk about it, you find you’re never more than one or two steps away from a common experience.”

If Spangler sounds surprisingly poised during what many would consider a difficult situation, there’s good reason. She serves as co-chair of the Life Care Planning Committee, a volunteer role that is part of Kaiser Permanente’s Santa Rosa Medical Center Council on Patient and Family Centered Care (PFCC).

In the PFCC universe, Spangler is known officially as a patient adviser – someone who gives feedback based on her own experiences as a patient or a patient’s family member. Patient advisers work with health care practice teams for short- or long-term commitments to help improve the patient experience and the quality of care.

Patient- and family-centered care is a concept that has been around for 30 years, and Kaiser Permanente is the largest health care system currently using the approach. The core concepts of PFCC are dignity and respect, information sharing, participation and collaboration. Learn more at ipfcc.org.

Patient advisers like Spangler are vital. Kaiser Permanente’s patient advisers, a diverse population with a 50-year age range, undergo a thorough screening and a comprehensive onboarding process before joining one of the working groups.

Advisers are brought together as local and regional councils that offer input and guidance in areas such as facilities design, leadership structure and physician hires. They often shadow a patient (with the patient’s permission) to better understand the care experience. Some councils have committees that focus on specific topics, such as maternity and child care, transgender issues, breast cancer experience and visiting hours.

Across the organization and its eight regions, Kaiser Permanente has 400 patient advisers serving on more than 50 patient advisory councils.

Each patient advisory council (PAC) has 10 to 20 engaged participants who bring the patient voice into many areas where they were previously not present. At Kaiser Permanente Santa Rosa alone, there are no longer set visiting hours, waiting rooms have been redesigned, and labor and delivery rooms now feature iPads for a more personalized experience. Using the touch-screen device, expectant moms can easily order their meals ahead of time, dim the lights, adjust the shades and more.

In addition to their council-specific duties, Kaiser Permanente patient advisers often present at national conferences, bringing the topic of patient- and family-centered care to the forefront and reminding clinicians and health care leaders of the importance and value of including the patient in the conversation.

A story in every pair of shoes

Spangler has been part of the Santa Rosa PAC since it began in 2011, shortly after she retired from GE Healthcare as a clinical researcher in interventional cardiology.

“I had spent my career on the high-tech side of health care, which is important and exciting,” said Spangler. “But the hard part is sitting in the waiting room, on the care delivery side. There is a story in every pair of shoes. That’s where the challenges really are.”

She is especially fond of her work on the Life Care Planning Committee, helping members explore end-of-life decisions: what care each person wants or doesn’t want, and who advocates on your behalf when you are incapacitated.

“It’s a sacred topic, but when you create the space, it’s amazing what people open up and share once they realize it doesn’t have to be a difficult conversation.”

To demonstrate how life care planning is just one of the many things we do to be healthy, Spangler was part of a group of patient advocates who introduced the topic of conversation at a flu shot clinic. As patients came in to get their vaccinations, PAC members asked about their end-of-life planning, including advance directives.

“Just as a mammogram or flu shot supports health,” said Spangler, “so does planning how to ‘leave well.’”

Patient centered work group meet in a conference room in a u-shaped grouping

What’s next for the patient advisory councils?

“We are undergoing a great transformation at Kaiser Permanente to fundamentally alter our relationship with our patients — some even call it a movement,” said Kerry Litman, MD. “This partnership to provide truly patient- and family-centered care will make Kaiser Permanente stronger and more successful as we benefit from the knowledge and perspectives of over 10 million members who say ’Nothing About Me Without Me.’”

PACs will also be instrumental in the development of the new Kaiser Permanente School of Medicine.

“We know the value that patients bring to the table when it comes to improving care delivery,” said Dr. Litman. “Involving the councils in the creation and development of the medical school will allow us to prove what we already know: Patients can help us create a more empathetic, patient-centered generation of doctors.”

What’s in it for them?

Why are patients willing to provide so much of their time and energy to take part in the patient advisory councils?

“I have asked the advisers that question myself,” said Kerry Litman, MD, the physician quality director at Kaiser Permanente Fontana Medical Center. “Almost universally, the advisers consider Kaiser Permanente to be ‘their’ health care system, and they have a tremendous personal incentive to help Kaiser Permanente improve: Their own health and well-being depend on it.”

While many advisers have had negative experiences and joined the council to help reduce the chance that another patient would have the same experience, others have had positive experiences and want to give back to ensure every patient gets that same level of high-quality care.

Everyone benefits

“In terms of evaluating effectiveness of our work in this area, measurement can be hard,” said Jean Ingram, principal consultant for National Risk Management and Patient Safety with Kaiser Permanente, who serves as the national lead on patient and family centered care. “But we’ve seen reduced hospital readmissions and we know anecdotally that clinicians and members are happier.

But there are other ways to measure the program’s value.

“One of the biggest accomplishments of something like this is that we are co-designing and co-developing with the people we are entrusted to care for,” continued Ingram. “We've made it a priority to focus on their needs, desires and expectations. It's better for Kaiser Permanente and better for members. And it’s the right thing to do.”