Beverley Johnson
President and CEO
Institute for Family-Centered Care
"It was always my dream that patient- and family-centered care was the way we cared for people of all ages." (1:33)
I’m Bev Johnson. I’m President and CEO of the Institute for Family-Centered Care. It’s a non-profit organization and we’re based in Bethesda, Maryland. The Institute was founded in 1992. We had an opportunity to really build on some of the work that we’d been doing the decade before, and that was building on Surgeon General Koop’s national campaign to integrate these concepts in the way we cared for children with special health needs. And later in the 1980s we worked with him around building a system of care for women affected by HIV and AIDS. So we had the opportunity to work with women, and their children, and their families. It was always my dream that patient- and family-centered care would be the way we cared for people of all ages, so we had the chance in founding the Institute to say, this should become the standard of care for everyone of all ages.
I got into this, probably because I had polio as a child, right at the end of the epidemic. And I had to make some choices as a young eight-year-old whether my family could be with me in the hospital. I had to pick the kind of room. I felt at the time no child should have to make that choice — that their family should always be able to be with them if that was their choice. So, I’m sure those were the roots of what I wanted to do.
"In the past it’s been all-knowing, all-powerful health professionals and administrative leaders making all the decisions." (1:59)
What we’ve been trying to do over the last three to four years is to help people link the terms patient- and family-centered together. That patient-centeredness alone, where we really listen to the patient and involve the patients in ways they choose, that’s the way we’re going to get the best health care, the highest quality, the safest health care. But patients alone, they don’t, for the most part, live alone; they’re supported by some people, whether it’s family, in the traditional, biological definition of family, or it’s some other broader social network. And so I think that we need to think about redefining this to make sure that our care practices, the systems of care, the way we educate the next generation of health professionals, really understand that it’s both patient- and family-centered that’s so important.
I think where the tension is — I’m still sort of sorting this out as we work more in the quality improvement world — is that in becoming patient- and family-centered, there is a necessity to spend time on process. On spending time learning to get to know people, and learning to understand different perspectives, and to level the playing field a bit. Because in the past it’s been all-knowing, all-powerful health professionals and administrative leaders making all the decisions. And patients, particularly patients who we’ve not served well, it may not be a comfortable conversation at first. So we need to spend time changing our framework to look at some of the issues from the perspective of patients and families, and that takes a little bit of time.
"We have almost felt that French provincial furniture and wallpaper is family-centered maternity care, and it’s not that." (1:18)
It is clear that this is the standard of care in pediatrics. I think it’s even clear that it’s the standard of care in newborn intensive care. And the momentum is such that I think that the Institute for Family-Centered Care could go away tomorrow and that momentum will continue. I don’t think that’s true in other areas of health care. The area that we have seen be the most resistant to change towards a more patient- and family-centered way is in the field of obstetrics. Which is sad to me because I think that it’s the clinical area where we have the most litigation, and yet it’s also the clinical area that we have not paused long enough to look at teaching those communication skills, the collaborative skills, the really designing the system from the perspective of child-bearing women and their families. I think we have almost felt that French provincial furniture and wallpaper is family-centered maternity care, and it’s not that. What we’re looking for is respect and choice, the opportunity to participate in the decision making and to really be respected as a partner in care.
"The organizations that have been working hard on this for the past several decades will say that this is a journey and not a destination." (1:50)
People always ask me, “What is, quote, the patient- and family-centered care best examples?” All of the organizations that have really been working hard on this for the past several decades will say that this is a journey and not a destination. That it is an ongoing commitment. That if we see this is as just a quick fix, that this is the flavor of the month, that this is a program to roll out. That’s not it at all. This is an ongoing, long-term commitment.
But I think we have to look at it in a broader way as well. That the physical environment where people come to work every day, if that is not supportive of the professional caregivers and other staff, if it’s not welcoming and supportive to patients and families, and for people from diverse cultures, we create a very dehumanizing workplace environment, and it gives people almost permission not to engage. We have a tremendous opportunity in our country — we are building more hospitals today than ever, we’re having to rebuild. And this is an opportunity not only to build the right kind of physical facility, but to think about the philosophy and the practice. And that would mean, the philosophy and practice, how are you going to use information technology in the new hospital? How are you going to make sure that every room has access to the Internet, so that patients and families can stay connected to their real world and access information about their health care? How are you going to design the facility to support the presence of families, so they are comfortable, and not in the way, and can fully engage and be a part of the alliance for safety?
"When the patient is actively engaged in their health care, the outcomes are better." (1:32)
There are so many people in our country of all ages that are living with some kind of chronic condition. I think it’s an opportunity, the data again are very clear, that when the patient is actively engaged in their health care, the outcomes are better. So I think there is an opportunity to really redesign that system of care particularly for those people, and if we do it there, I think it will then spread to other areas of health care. And there’s the opportunity to drill down more finely, to look at chronic illness care, and around collaborative self-management support, where really it’s the patient who must live with the chronic condition, who must manage it on a day-to-day basis. It’s one of the clear ways that makes us go from just being patient-centered to patient- and family-centered. People with chronic conditions are most dependent on their families or their natural support systems to manage that. Who is going to help them get to the to doctor’s appointments? Who is going to buy the food in the grocery store that will help them adhere to their diabetes diet? Who’s going to do some of the exercises with them that will help them manage their weight control, or whatever it may be. And I look forward to having the chance to work with patients and families living with chronic conditions to help us change both how we deliver that care and how we train the next generation of health professionals for that field.
04/10/2006
