The Patient as Care Team Member

An engaged patient can and should be involved in the decision-making process. But don't think of patient-centered care as a customer service program.

This article first appeared in the November 2015 issue of HealthLeaders magazine.

Joan Kelly knows what it's like to be left out of critical care decisions in hospital and ambulatory care settings. Her parents suffered from chronic, debilitating diseases, leaving her to seek out their doctors for insight into their diagnoses and treatment. Too often she and her parents received instructions on—rather than involvement in—the direction of their care. Now as chief patient experience officer at NYU Langone Medical Center in New York City, which includes numerous outpatient locations as well as more than 1,000 beds among four inpatient facilities, Kelly has made it her mission to make shared decision-making a core principle for the academic health system.

"Shared decision-making is not about handing a patient a brochure and asking if he or she understands it," Kelly says. Instead, she wants all physicians, nurses, and other clinicians to help patients and their families to become informed enough to be actionable about their care.

Kelly is not alone. A movement is afoot in the healthcare industry to make patients fully participating members of their own care teams. Proponents of shared decision-making believe that greater patient awareness, education, and involvement could boost the likelihood that a patient will follow through on a care plan, leading to improved outcomes and satisfaction. But issues such as out-of-date processes, a patient's health literacy level, and a hospital's communication culture could impact the success of a shared decision-making effort.

At NYU Langone, Kelly's ideal would be for each patient to have a "journey map" created at the time he or she first contacts the hospital; the map would illustrate the entire care experience, including diagnoses, medications, and his or her care plan. Not only would clinicians contribute to the journey map, but so would patients and family members who are likely to notice changes in weight, diet, sleep habits, and other health indicators.

Developing a map, which would sit in the electronic medical record system and be accessible through the patient portal, would enhance shared decision-making because everyone would have access to all aspects of a patient's medical status, says Kelly, who brought the idea from her earlier career in consumer marketing.

Creating the journey map identified areas of opportunity to improve hospital processes, one being handoffs from the emergency services center to the medical and surgical floors at 725-bed Tisch Hospital. Around 70% of the system's ER patients are transferred to medical and surgical units. Patients, who may find an ER experience unexpected and disconcerting, often are left to watch passively as clinicians go in and out of their rooms, performing tests and procedures, handing them paperwork to read, sometimes without discussion.

"In a teaching hospital, some inpatients may see 30 different hospital staff in a day; how are they supposed to know what each person did?" Kelly says. In addition, patients can be overwhelmed by receiving dozens of pieces of paper, including brochures, financial and regulatory information, and discharge instructions. "By the time they get to the last piece of paper, they are overwhelmed."

To better engage patients in their care, Kelly is overseeing a pilot program aimed at involving patients in decision-making. As a start, ER and floor clinicians now converse with patients and families about the tests and procedures taking place, explaining why they feel they are necessary and then listening to any concerns or objections. For instance, if a patient questions why he or she has to stay in the ER to have certain tests done, the care team—patient included—can decide whether some or all can be done on an outpatient basis. Physicians are encouraged to bring the family bedside to hear the information at the same time as the patient to avoid any miscommunication.

Kelly also is working with her team to document how patients best receive information—are they more visual or verbal?—and then provide information accordingly. She wants this insight to be part of the patient file so critical information such as transfers, discharges, and medications can be explained in a manner appropriate to the patient's ability to comprehend it. For instance, some senior patients may require 15 minutes to express themselves, Kelly says, so a doctor transferring an elderly patient should set aside the time necessary for them to digest the information and then have input on decisions.

"People are more apt to invest in their own health if we take the time to get to know them and make the information digestible for them," she says.

Kelly hopes that what they learn from the pilot project will be ready to use in the hospital's Helen L. and Martin S. Kimmel Pavilion, an 830,000-square-foot facility adjoining Tisch Hospital that is set to open in 2017.

Tough talk
UPMC, the Pittsburgh-based health system, has been working to foster shared decision-making across its 20-plus hospitals and its 5,100 licensed beds. The organization selected the ICU at UPMC St. Margaret, where communication was lacking between clinicians and patients and their families, as an opportunity to drive change.

"Because no two patients are alike, shared decision-making becomes all about conversation, and not all clinicians are good at having a conversation," says Tami Minnier, RN, MSN, FACHE, chief quality officer for UPMC, which includes the 249-bed acute care and teaching hospital UPMC St. Margaret, about 8 miles east of the city's downtown.

UPMC tapped a palliative care expert to train the physicians and nurses in "how to open the door," using actors to role-play both clinicians and patients. One of the first things the clinicians learned is to identify the power of attorney. "You don't want to have this discussion with the wrong person and you can't just grab whoever is sitting in the waiting room," Minnier says.

Now clinicians meet with the patient (if possible) and the family members on day 3 or 4 of the patient's stay in the ICU—she says "that's when you typically know if care is going to be more complex"—to explain projections for care and the treatment options, Minnier says. "We lay out where we could go from here," and gather input.

UPMC's ICU program has been leadership-driven and supported, which Minnier says gives clinicians "the motivation and permission they need."

A helpful tool in these discussions has been the "goals of care" document, which Minnier hopes will be consistent in patients' electronic medical records in the near future. She says all patients should have a conversation with their doctors about their advanced directive and other wishes for care. At last count, thanks in part to National Healthcare Decisions Day each April 16, UPMC has provided goals of care forms through access on UPMC.com to more than 100,000 patients.

Minnier says she is a strong supporter of Centers for Medicare & Medicaid Services' reimbursements for goals of care conversations. "These conversations are not free and they are not easy. I'm glad CMS recognized the fact that talking to patients is as important as doing something to them," she says.

Primary care
While NYU Langone and UPMC are focused on the emergency and intensive care departments, respectively, Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, is incorporating shared decision-making into the primary care and specialist settings.

Thanks to a "caring attitudes" grant from the Arthur Vining Davis Foundations, the nonprofit academic health system—which includes a main hospital, a children's wing, a cancer center, an association with the Geisel School of Medicine at Dartmouth, and community group practices—has created a pilot program through its Center for Shared Decision Making to foster better doctor-patient communication.

Through this Patient Support Corps Service Learning Program, volunteers (medical students and undergraduates from the nearby colleges as well as community volunteers) are trained in a technique developed by Jeff Belkora, PhD, at UCSF to assist patients in articulating their questions and concerns during a phone call ahead of an appointment. The volunteer then organizes the conversation into a concise one-page document for the patient and the physician to review in office.

"For instance, patients might ask if they can receive treatment locally, saving them an exhaustive trip," says Susan Berg, MS, program director.

Volunteers also accompany patients on their visit, recording the session so the patient can have improved recall of the visit. Berg says the program is getting a great reception from patients and clinicians, with one doctor relaying that a patient who had been scattered in her thoughts was able to clearly convey her concerns, leading to productive shared decision-making. In another case, a patient said she was worried about how trigger-thumb surgery would impact her art career. "The doctor might not have known to take that into consideration," Berg says.

Though the program currently is established in only a few departments, it is growing via patient request, and Berg says she hopes it will be available systemwide within five years.

The Center for Shared Decision Making is instrumental in prepping patients with certain diagnoses for their consultations. The center provides decision aides and the center's health coaches offer decision-support counseling for patients. For instance, before a patient meets with the breast surgeon, a decision aide provides information about lumpectomies with radiation vs. a mastectomy.

"Rather than a doctor having to spend all the appointment time educating the patient on options, together they can decide which is the better option based on the person's lifestyle and values," Berg says. "It's a much more personalized conversation, and we've found that people are more likely to follow through on a recommendation if they were involved in the decision."

Culture shift
At Georgia Regents Health System in Augusta—which had nearly 500,000 inpatient and outpatient visits in 2014—the 478-bed Georgia Regents Medical Center is moving toward shared decision-making and has required some pretty drastic changes, according to Bernard Roberson, MSM, the administrative director.

The transformation began with the pediatric ICU at Children's Hospital of Georgia because parents were concerned about how they were being treated while their children were patients. The change continued with GRMC's neuroscience department, which had low patient and staff satisfaction scores, and needed to improve metrics for patient length of stay and medication errors.

A cross-functional team of physicians, nurses, and patients helped revamp the department. A key task for the team was to have everyone in the unit reapply for their jobs and then undergo interviews. In 2005, Roberson was hired to implement patient and family-centered care throughout GRMC.

The team asked questions such as, "How do you feel about families being at bedsides 24 hours a day?" and some staff responded, "We don't like families questioning us." Roberson says it was clear which clinicians would have a difficult time accepting a shared decision-making environment and, indeed, nurses and doctors opposed to a more open environment did not stay on. Within 18 months of restaffing the unit, patient satisfaction went from 1% to 60%, and within 24 months, it climbed to 90%. One of the biggest changes Roberson has seen is that families are invited to stay at the patient's bedside 24 hours a day, automatically helping them to be an integral part of the patient's care.

"People confuse patient-centered care with a customer service program. It's not; it's about partnerships between the clinicians and the patients and families," he says.

Roberson notes that shared decision-making needs constant attention, or else it could be back-burnered by competing priorities and changes in leadership. "Shared decision-making has to stay in the forefront. It's our job to explain the patient's role in his or her own healthcare," he says.

"People confuse patient-centered care with a customer service program. It's not; it's about partnerships between the clinicians and the patients and families."

For Dartmouth-Hitchcock's Berg, shared decision-making can be summed up as inclusion. "Ultimately, at the end of the day, it's about if the patients and families feel they were listened to, their opinions mattered, and they formed a care plan they were comfortable with," she says. "It's not about what decision they make, but that they are part of the decision."

Reprint HLR1115-7