We asked person-centered care expert, Dr. Liza Behrens, to share her insights on honoring preferences when the choice involves risk. Dr. Behrens is Assistant Professor, Ross and Carol Nese College of Nursing at Penn State and a member of the Preference Based Living team. She told us about her interest in this topic, the complexity of honoring risky preferences during Covid and more. Read on for our takeaways from the conversation.

How did Liza become interested in risky preferences that involve risk?

“I became interested in risky preferences because I was interested in person-centered care…and that was part of my doctoral journey.”

  •  “My interest was piqued because of my own personal values. I love older adults and I couldn’t understand – and I still don’t understand – how something as simple as honoring a request to go outside could be so difficult for people living in nursing homes.”

“I needed to try to understand this – it’s complex. It isn’t a simple ‘just do it and get it done.’ There are many factors to consider.”

  • Liza’s work aims to better understand how nursing and direct care staff perceive risk in the nursing home. One major factor is our culture of “surplus safety or safety at all costs.” But at times, ensuring safety comes at the expense of an older adult’s well-being and we lose sight of preferences in the process. “That’s really the balance that we’re trying to strike here.”

How has the COVID-19 pandemic affected decisions about preferences and risk?

  • The pandemic has made striking the right balance more difficult because “every preference in the context of COVID is now a risky preference.” This points to the need for effective and practical ways to assess resident preferences so we can “really understand what is most important to each person, and how [can] we honor that. We need to find ways to honor preferences in spite of the risks.”
  • “We need to start thinking about next steps. We need to look at the kinds of safeguards, policies, and procedures we can put into place – so that residents can have their preferences honored to visit with family, to go outdoors, and make autonomous decisions. We need to be creative and come up with individualized solutions.”

“You can’t talk about person-centered care, you can’t talk about honoring preferences without talking about the direct care providers, the people caring for the older adults, and living with them every day.”

  • Liza belongs to a Facebook group where long-term care nurses share their insights and create a sense of community. From the posts on the site, as well as Liza’s own experience and research, she sees the profound commitment that direct care staff at all levels have to the residents under their care.
  • “We need to be paying attention to direct care staff – they’re under a lot of stress.” It’s important for staff to feel comfortable enough in their environment to continue building relationships with residents. Staff turnover, constant fear, and anxiety are making it difficult for staff to honor complex resident preferences. “We know preferences work really well when you have consistent staffing, but that’s hard to do right now.” Providing a healthy environment for staff “needs to be a standard safeguard.”

“We have room to improve the care planning process…at a more systematic level, which requires caring. And that’s what we do as nurses and direct care workers; we care.”

  • We’re asking nurses, activity directors, and other direct care staff to participate in and lead clinical decision-making that involve considerable risks to residents, themselves, and the organization. Yetfew have training in person-centered care or decision-making frameworks. “We need to think about how to make clinical decision-making processes easier for staff so they can navigate the risks to residents, while honoring their preferences. That’s the overarching goal.”

What’s next on Liza’s research agenda?

Two new projects:

  • A study of nursing home staff perceptions of risk during the Covid-19 pandemic – and she’d love to have you participate. If you have worked in a nursing home during the pandemic, please consider joining the study! Find details here. [hyperlink to flyer]
  • A DIGNITY (Decision-making in Aging and Dementia for Autonomy) intervention guide that will provide a collection of best practices to honor preferences that involve risk. SoonLiza will convene a stakeholder group – with nursing home administrators, direct care staff, residents, and state government representatives – to assist with the project. We’ll keep you posted!