Increasingly, though, they are doing just that—but at the request of the hospital, and in an effort to improve care. They are being recruited for patient and family advisory councils to work on projects and policies along with hospital staff, weighing in on matters ranging from the design of hospital rooms to improving communication with nurses, and even tagging along with doctors on their rounds.
As a hospital volunteer opportunity, advisory councils go far beyond the traditional role of handing out magazines and manning an information booth, and can require a significant time commitment. But former patients who have taken on the challenge say it helps them advocate for other patients and families in a way they could never do otherwise.
For hospitals, the councils are an integral part of a strategy known as patient and family engagement. Councils were rare in hospitals a decade ago, but a survey published in the journal BMJ Safety and Quality earlier this year found that about 38% of hospitals surveyed had the panels.
The survey, conducted by the nonprofit Health Research and Educational Trust and funded by the Gordon and Betty Moore Foundation, also indicated that hospitals with patient and family advisory councils had a higher percentage of patients rating a hospital a 9 or 10 out of a possible 10 on patient satisfaction surveys than at hospitals without councils. Medicare uses the surveys in setting some payments to hospitals.
To join a council, patients and families can let doctors or nurses they deal with know of their interest; many hospitals rely on staff to identify patients and family members who would be good candidates. Often they ask patients who have had a difficult experience, expressed complaints or offered suggestions on how things could be improved.
“We are looking for people who have thoughtful feedback and are ready to move forward, rather than someone who is super-angry with us,” says Cindy Sayre, an associate administrator at the University of Washington Medical Center in Seattle.
The hospital has several councils that have already helped make significant changes. In the past, the intensive-care unit was less than welcoming, keeping families out of the unit and locking the doors at night, says Keri Nasenbeny, assistant administrator for critical care. A patient and family council formed in 2008 has helped provide open access to families around the clock, dropping a requirement to call before visiting and adding amenities such as iPads, sleeper chairs and phone chargers for families.
Paul Lifschultz, 61, started treatment at the University of Washington for acute lymphocytic leukemia in 2010, which involved four or five days in the hospital almost monthly for six months. After two years of maintenance chemotherapy he was diagnosed with myelodysplastic syndrome, requiring a bone-marrow transplant in 2013. Though the care was excellent, and he credits the hospital with saving his life twice, there were issues that irked him, such as the fact that doctors rarely engaged patients and families when they were on their rounds and nurses rarely communicated during shift changes.
Mr. Lifschultz, says that as a patient, he was always chatting with staff members and curious about what was going on at the hospital. He was asked to join an inpatient advisory council in 2011. Since then, he has served on various councils and committees, helping to rewrite patient handbooks and make the wording on signs clearer, and considering issues as diverse as architectural-design projects, the way letters of condolence are written and how the billing department communicates.
Among his favorite roles is attending bedside rounds with doctors, who under new hospital policies go into patient rooms with other staffers and talk directly to the patients and their families. He sometimes acts as a “secret shopper” on rounds, taking note of whether a pharmacist was present to discuss medication issues and whether doctors had taken a family’s input about a patient into account. He often talks to patients himself, telling them he has been in their shoes “and trying to make them more comfortable and confident in their treatment.”
Mr. Lifschultz is back to work in strategic development at a food marketing and distribution company, but spends about 16 hours a month at the hospital, often getting up at 5:30 a.m. to be there at 7 for meetings and rounds before work. He loves his day job, he says, but “being at the hospital gives me emotional and psychic rewards. “I’ve found the providers to be incredibly receptive to the council members’ opinions and am grateful for being allowed to participate in the process.”
LifePoint Health, which operates about 70 hospitals in 22 states, created a national family advisory board last year with seven family members and six staff members. Rusty Holman, LifePoint’s chief medical officer, says the national council has focused on such issues as helping local hospitals adopt bedside shift reports, which require nurses to confer at the patient bedside when changing shifts, and the development of a patient portal that connects to electronic medical records and primary-care offices.
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At LifePoint’s Havasu Regional Medical Center in Lake Havasu City, Ariz., the local council has worked on emergency-department discharge education for patients who get higher-risk medicines such as narcotics, and eliminating defined visiting hours, so people can see their hospitalized family members anytime.
Another advisory council at Conemaugh Medical Center in Johnstown, Pa., is advising on the layout and design of a new hospital building and redesigning the white boards located in patient rooms so that they are more patient- and family-friendly.
Some council members have a particular area of interest. For Amy Buesing, it’s medication safety. A former pharmacist at LifePoint’s Memorial Medical Center of Las Cruces, N.M., she was treated for breast cancer at the hospital and later had a double knee replacement. One goal for her on Memorial’s council is to make sure patients understand their medicines both in the hospital and when they are sent home, and to ensure nurses are well educated about helping patients manage their pain.
“When I was diagnosed with breast cancer, one of the first things that popped into my head was that I’m going to find a larger purpose out of this,” Ms. Buesing says. Serving on the advisory council has given her the chance “to influence care and impact patients in a positive way.”