- Karen C. Schoeneman, MPA
Conversations with Leaders in the Field of Patient-Centered Care is a regular feature that highlights people who have promoted patient-centered care in their work or through their organization. This Conversation is with Karen Schoeneman, the winner of the 2010 Picker Award for Excellence® in the Advancement of Patient-Centered Care in a Long-Term Care Setting.
Karen C. Schoeneman, M.P.A., has served as the deputy director of the Centers for Medicare and Medicaid Services Division of Nursing Homes since 1989, with the responsibility for surveying and certifying nursing homes. She manages the division’s clinical team, which administers the long-term care survey process, the interpretive guidelines and the Quality Indicators Survey process implemented in 2008. A nationally recognized expert in the field of changing the culture of aging, Ms. Schoeneman is the CMS lead for this vital issue, which seeks to transform nursing homes from rule-bound institutions to home-like settings by adopting the principles and practices of patient-centered care to greatly enhances the quality of life for residents. At CMS, Ms. Schoeneman has led or co-led the development of all traditional survey process changes since 1993, including revisions in response to the Clinton Administration’s Nursing Home Initiative. She represents CMS on the Veterans Administration Culture Change Task Force and the Pioneer Network Small House/Household Project. A founding member of Pioneer Network and an Eden Associate, she is the winner of the 2010 American College of Health Care Administrators Public Service Award.
You are a very strong advocate for improving the quality of care in long-term care settings, such as nursing homes. You and your colleagues who share this concern are very passionate about it. Where does this energy and commitment come from?
My passion started in my long career in social services in a large state veterans’ home. I found many institutional rules and practices getting in the way of quality of life for residents, and both residents and staff were frequently in my office expressing their angst with tears or anger. Staff being moved “so they wouldn’t get attached” cried at the prospect of leaving residents and teammates; residents who served our country in World War II expressed fury at being told to go to bed at a time convenient for staff or based on “policy”; and so many more cold and old ways of organizing institutions. I was powerless to affect the system then, but I could see that those old ways did not work. They were not efficient, they were just old habits. It is not possible to remain unattached to residents. Attachment happens in a day or so when staff members who love elders meet a new person who has moved in.
And now that I’ve visited several changing homes and felt the residents’ happiness and seen the positive effects on them and the staff, my enthusiasm for spreading this goodness all over the nation is boundless. Some of these homes are so good that I would be quite happy to move in myself.
You were a founding member of the Pioneer Network in 1997, with a mission to bring patient-centered care to long-term care. Where in that mission are you and Pioneer?
When the original group of Pioneers gathered in 1997, I was at CMS and leading the Quality of Life portion of the regulations. I could see immediately that ways were finally being found to run nursing homes effectively while maximizing the quality of life for residents, and staff too. I could see that if nursing homes could change to this new way of thinking, my dream could surely come true.
CMS has come to believe that the culture change movement, from institutional thinking to residents self-directing their lives, is a direct result of law and the regulations, which mandate the highest level of quality of life in a good environment with good food and good services. So we, as the regulator of nursing homes, have tried to do all we could to support everyone’s efforts to improve quality through this movement.
I’ve been so pleased to see all the state and federal surveyors recognizing the connections between culture change and quality of life, and seeing how the innovators can comply with the regulations. CMS has sat on Pioneer panels, co-sponsored symposia, worked on task force efforts and even recruited our counterparts from FDA and CDC to become part of the dialog. Our CMS regions and many state survey personnel have spoken at conferences, sat on culture change coalitions and worked with homes to help them find their way through compliance issues. CMS has mandated resident interviews about their choices in every resident assessment; interpretive guidelines have been written to enhance resident choices, dignity, even good lighting and sufficient outlets for personal electronic equipment.
Our 2009 guidance changes ended the old practice of visiting hours being over at 8 p.m.; now they are 24 hours, as long as others are not disturbed. We put a culture change section in the national CMS Guide to Choosing a Nursing Home that is mailed to millions of citizens.
The heart of the matter is specific issues: How can a nursing home make sure residents have access to foods they want in light of regulations for menus and therapeutic diets? Can nursing homes grow gardens for use in their meal service? These are just two of many dozens of specific issues coming up. CMS is trying to help figure it out in ways that maintain safety while enhancing quality of life, and we are pleased to keep doing this until the old ways become dead and forgotten and we understand the new ways. I believe there is no turning back. The old institution is dead—let’s bury it.
According to government statistics, some 13 percent of the population of the United States is now 65 or older, and as more and more baby boomers cross that line, the rate will grow to 18 percent. Can we hope to bring patient-centered care to such a huge population without considerable government participation?
Well, first of all, you have significant government participation in helping innovators figure out how to comply with the regulations. As well, the business case research that I’ve seen shows that changing culture actually saves money, after an initial training period for the staff. The only way baby boomers are going to tolerate living in nursing homes, even for short visits, is if they retain a lot of their decision-making capacity and are known and served as individuals. The day of one- size-fits-all care is quickly coming to an end. I am quite pleased to see the progress thus far, and I fully expect dramatic gains in this current decade. The news is out, the research is positive and the government is aboard. All systems are go.
What role do you think the government should be taking in effecting this change? Do you think there is a need for more government initiatives like the 1987 Omnibus Reconciliation Act?
I can’t speak for all of CMS or all of “the government.” From where I sit, CMS is on board with these efforts to maximize quality of life while retaining good care. Spreading the word, getting people onboard, is happening, but these efforts are person-to-person and are sometimes not visible until a dramatic shift in a home occurs. We need to keep going, and go forward together (regulators, clinicians, researchers, nursing home staff, residents, families) not only to bring a better life to residents of nursing homes but also to spread this philosophy across all of long-term care and healthcare itself.
The regulations are not static; they change in response to changes in society. The OBRA regulations were ahead of their time, and thanks to this movement they are finally being implemented. We have to maintain contact with each other, and this is happening at state and federal levels, in culture change coalitions, at conferences, in task forces. We all want the same thing: Good care while having a good life.
Where do you see this mission being in 10 years?
We’ve traveled quite far in relatively few years. The tipping point has tipped, the word is out, people are getting aboard not only in the United States but in several other countries. What do I see in 10 years? I see the old institution no longer being the norm. I think it will be pretty easy for consumers to find a great nursing home in their town. Maybe not all of the homes will have changed dramatically, but it will be the majority. We who have the vision must commit ourselves over the long haul to ensuring that it does indeed happen. There is work to do. Let’s all just do it!