But organizations that don't seek input from patients and families or involve them in the care team are taking a different risk. "If you don't do this you are committing yourself to the risk of poor quality," says Ted Eytan, MD, medical director, operations improvement at Oakland, CA-based The Permanente Federation LLC, referring to the death of 18-month-old Josie King at Johns Hopkins Children's Center in 2001. She died of dehydration and misused narcotics, even though her mother questioned the medication because there had been an order for no narcotics. The mother had also expressed concern that her daughter seemed desperately thirsty.
"It is unreasonable to say today that patients shouldn't have a seat at the table," says Eytan. "What is reasonable to say and a really good question to ask is how do we do this?"
When involving patients and families in hospital committees setting some ground rules can help the effort be successful. Explain to the patient or family member that you are looking for constructive advice, but it is not their role to tell management how to do their job. In addition, explain to them about payment—whether it is a voluntary commitment only or parking will be paid or they will receive a stipend—and make sure to involve the legal department regarding confidentiality agreements, says Eytan.
Executives should communicate to staff members why this program is important and what the organization hopes to achieve, and they should treat the patient like a prospective new employee and provide training and support, Eytan says. Hospital leaders should also consider asking the patients or family members how they would like to be involved and what systems may need to be in place to ensure they are comfortable and not intimidated. "Having one patient in a room of doctors is not patient involvement," he says.
Asking for input on operational issues or design specs may not be as disruptive, however, as having patients and family members privy to rounding discussions and other processes that unlimited visitation provides.
Some family members want to be actively involved in caring for their loved one, while others want the medical staff to provide those services. The challenge is developing a plan that works for a particular family and patient that maximizes their involvement, but doesn't hinder the timeliness required for critical interventions, says Woodrell. "It is something that we have to strive for because it is what patients want today and, I think, deserve. But we can't so encumber our healthcare professional and those at the bedsides that they can't do their clinical work in a timely fashion."