Patients and Families Are Leading the Way (includes excerpts from Institute of Family Centered Care article 2/06)

Learning to work with patients and families as true partners in their own care is neither easy nor intuitive. It involves significant changes, both cultural and logistical. But pressure to do so is increasing. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has joined the Institute of Medicine (IOM) in setting goals concerning patient involvement, and the Centers for Medicare & Medicaid Services (CMS) is looking at doing so. But pressure from patients and family members makes this change inevitable and our patients and families are taking us there.

Patient-Centered Care Grounded in Respect

How does respect get put into action? Hospitals working toward patient and family centered care are finding many and varied ways, including placing patients or family members on key committees beyond the traditional grievance committee; teaching caregivers how to listen and communicate more effectively, especially in difficult clinical situations; and including family members in daily rounds; offering family members opportunities to provide some direct care when appropriate; enlisting the help of family members and patients themselves in reviewing daily medication lists; and even allowing family members to remain in the room during resuscitations.

We at Windham Hospital are engaging families in all of the above. "There is still lots of room for change," states Mary C. Horan, MA, Director of Family Centered Care at Windham. "It's an evolving process, one in which each of us must determine for ourselves how we will incorporate the expertise of families and patients into our work."

Moving Beyond Good Intentions

Changes such as these require a new way of thinking. "Most people truly believe they are thinking about and for the patient," says Susan Grant, MS, RN, CNAA, Chief Nursing Officer at the University of Washington Medical Center in Seattle. "But there is a difference between assuming you know what's right for the patient and engaging in discussions where you have the patient define that." Patient-centered care moves beyond good intentions to include the patient's and the family's preferences.

The best way to know what those preferences are is to ask. With patients who are either unconscious for much of their stay or otherwise unable to communicate well, engaging the family's perspective is a key factor in improving outcomes. "A simple way to get started," says Horan, "is to just ask." But it doesn't end there. Healthcare workers must be willing to listen. A true partnership involves more than just giving information. Caregivers must also be willing to seek and respect input from patients and family members on issues both broad and specific. This is where the greatest challenges often lie, and where strong leadership is essential. "We haven't been trained to share responsibility or to trust in the perspectives of other partners," says Jim Conway, a senior fellow at the Institute of Healthcare Improvement, a non-profit organization located in Cambridge, MA. Working with Dana-Farber Institute, Conway notes,"When we invited patients to sit on our planning committees, our physicians thought we had lost it. Within two weeks one physician said, 'They are teaching us things we didn't know.'"

Most people want the physician to ask them what their concerns are first, before launching into a speech about the patient's status. This is not just good manners it's good practice. Misunderstandings are more likely to occur under stressful conditions. Creating opportunities to share information and reduce stress has a positive impact on communication. Feedback gathered from surveys and group discussions teaches hospitals a lot about how to communicate more effectively, how to take cues from families about when to repeat things, or when to back off and give them a break from all the information they're asked to absorb.

People think they're supposed to understand, so they don't ask questions. In most areas of the country 35 to 40 percent of patients do not have what is referred to as health literacy, the basic knowledge or capacity to understand health issues and treatment. They either don't understand or don't follow with accuracy information and instructions about their health, and then they get labeled 'non-compliant.'" More and more hospitals recognize this deficit and are coming to rely on patient advisory groups for feedback about how patients best receive information.

At Windham Hospital we have a number of patient and family advisors - patients and/or family members who can share the lessons from their experiences - sit on committees and specialty-specific Advisory Councils. Among other tasks, these councils work with staff to create guidelines and services that work for patients and families. Here at Windham, WE make it work!