Let’s look at what’s right about nursing homes [PODCAST]

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“Extensive media coverage of the emotional and death tolls that COVID-19 inflicted on nursing homes has intensified concern for preserving the humanity of an often-overlooked population. There is an opportunity to re-examine the policies and practices that shape the nursing home experience and to add quality metrics that capture the aspects of life and community that matter most to residents and their families.”

Carol Podgorski is an associate professor of psychiatry.

She shares her story and discusses her KevinMD article, “We need to re-examine quality-of-life metrics in nursing homes.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Carol Podgorski. She is an associate professor of psychiatry, and she wrote the KevinMD article “We need to re-examine quality-of-life metrics in nursing homes.” Carol, welcome to the show.

Carol Podgorski: Nice to be with you.

Kevin Pho: We’ll get into the article in a little bit, but first off, can you share your story and journey to where you are today?

Carol Podgorski: I’m a family therapist and a medical family therapist, and my special interests are in working with older adults. I have a keen interest in working with older adults and their adult children and the relationships that develop. I also work in a dementia clinic, our academic-based memory care program, and I’m fortunate to do family therapy there with patients as well as families. For over 20 years, I’ve also worked in long-term care settings doing family therapy with residents and their families.

Kevin Pho: In terms of your family therapy practice, what are some typical cases that you see? What are some typical issues that you see every day? Perhaps walk us through an example of what you see in long-term care, since that was what the article focused on.

Carol Podgorski: A lot of times, it’s adjustments. There’s that place where, when somebody’s entering a long-term care facility, they’re trying to hang on to being a part of their family but also wanting to adjust to a new place, and that’s sometimes very difficult for the resident as well as for the families.

We also often assume that when somebody admits a loved one to a long-term care facility, the caregivers are done caregiving, when in reality they’re not. They usually only give up that responsibility because they can no longer provide safety or the best care for someone, but it doesn’t mean they don’t want to be connected. So some of the things that I work on are trying to find ways to help families feel that they can still be a part of caring for that person and becoming a part of the facility themselves. That’s very important for people. They want to become part of the community where their loved one is, and I think people don’t understand that.

So, adjustments. We work on adjustment to placement and adjustment to changes in health status. Sometimes families might resent it when residents adjust better than they thought they would, because then they think the care they were providing was inadequate. There are all kinds of things that come up. Staff-family conflict, we work with that. There are all kinds of things. We often think about long-term care as a place where people go to die or spend their last years of life, when in reality, often people go there to live. There are a lot of kinds of family dynamics and roommate dynamics. People fall in love there. There are all kinds of things that happen. They’re very active communities.

Kevin Pho: As a primary care physician, I see this scenario a lot. So just from the family standpoint, what is the top actionable tip that you give to these families when their loved one goes to a long-term care facility?

Carol Podgorski: I tell them to try to understand the culture before they choose the facility, right? There are some places, you probably have seen it, where family members are welcome to bring the Sunday pasta leftovers for the resident and put it in the refrigerator, and they’re welcome to get a beverage for someone, and they become part of the unit, where they feel very comfortable. There are other facilities where there are nurses that say, “That’s employees only. You can’t go in that area,” you know? So there are some places that are very welcoming of families and some places that want to keep families in their place. I think it’s really important for families to understand what kind of philosophy the different units or different facilities have, to see if it’s a good fit for them.

Kevin Pho: All right, let’s transition now into the KevinMD article that you wrote. It’s titled “We need to re-examine quality-of-life metrics in nursing homes.” Now, for those who didn’t get a chance to read that article, can you just walk my audience through it and share the story of why you decided to write it?

Carol Podgorski: The basis for the story came mostly because the pandemic was really shining a light on a lot of, you know, different paradoxes. At first, we could understand the nursing home visitor ban from a public health perspective, right? It made sense that you want to keep people safe. But as it went on for a year, and I was working with caregivers, particularly caregivers of people with dementia, their stories were gut-wrenching, you know?

Especially Susan, the person I talked about in the article. She was somebody whose husband has frontotemporal dementia. He’s younger than most people, nonverbal, and she used to visit him often. She was wondering, “What must he think, that I’m not there?” You know, her mind just took her to these very dark places of “He must feel like I died, or I abandoned him.” The idea that it’s a progressive degenerative illness, and she lost his last best year. Would he recognize her again? Would he know who she was? Would she be able to see him again? It was a year since they had any physical contact, that she could even give him a hug. Those things were really gut-wrenching.

And when I also stopped to think about it, there were some facilities that were saying you could get around the visitor ban with compassionate care visits, right? For people who were failing to thrive, people who were moving toward end of life because they stopped eating or whatever. And then we found that when people actually had compassionate care visits, they came off hospice. They started to improve. And then for me, it started to seem like an ethical dilemma, right? How do we balance the public health needs of people with this fundamental need for human connection? It just seemed like it didn’t fit.

So the reason I wrote this article was to really think about long-term care and what we could learn from this pandemic experience. The other thing I remembered that sparked this was that in the media, there were a lot of wonderful stories about how hospital workers were heroes, which they definitely are, but nursing home workers were more like villains because the death rates were so high. And working in long-term care, that’s really very unfair, because the people do care a lot. There were nursing administrators who were going to pick up aides for shifts to prevent them from taking public transportation, where it would increase their risk of infection. There were so many good things that were going on, and yet there was this, you know, contrast between “hospital workers good, nursing home workers bad,” which made me start to think about it. Yes, there are things that need to be fixed in health care and in long-term care, but what would happen if we actually looked at what was right about it and what were some of the strengths about it? So those were some of the things that I was thinking about as I started to write this article.

And I started thinking about families. When the pandemic hit, nursing home staff levels were already low. They became lower, and one of the things we did with the visitor ban was we made it worse, because we took away an entire layer of staff: the family caregivers, the ones who help to feed them, the ones who do their laundry, the ones who take time to provide personal care like shaving or manicures or rubbing lotion. We took away a whole informal level of care from a system that was already crippled. So I started thinking about that and the role of families, and how we really need to think about families as more than just visitors in long-term care, because they’re an essential part of the experience of the community as well as the residents.

Kevin Pho: Do you see the nursing homes evolving to meet some of the vision that you described? Right now, we’re 16 to 17 months into the pandemic. Tell me about the evolution of these visitor bans. Do you see them changing?

Carol Podgorski: Ugly head again. I thought there would be more of a backlash. I was working with some long-term care facilities on trying to help prepare the staff for allowing family members back in, because you can imagine, after you hadn’t been there for six months or a year, the anger that people had, or maybe seeing how their loved one was so much less functional than before, that there would be a lot of anger. I haven’t seen that so much, even though we tried to prepare people for it. The other thing is, the staff turned over so much in the nursing homes during the pandemic that it was really like family members were coming in and meeting everybody brand new for the first time. So that was kind of a different dynamic too. Everybody was really getting to know each other. So a lot of the anger that I predicted would happen, I didn’t really see.

But I was surprised that there aren’t more people who are trying to continue the advocacy for nursing home reform, as there were when we had 150,000 nursing home deaths, you know? There were regulators who were talking, policymakers, that they were going to make all of these changes. I was concerned about the changes, but now I’m more concerned about no changes. So I’m a little bit concerned about that. But I really think that we need to understand how our nursing homes are health care facilities and how they are living communities, right? We really need to have more balance between how do we protect the population, but at the same time, how do we honor patient- or resident-centered needs for autonomy and connection and those kinds of things?

I’m on a foundation board for a nursing home, and I got to do a town hall meeting with residents of all ages a couple of years ago. What they said is they wanted to feel part of the community. They wanted to use the skills and abilities that they had to help people who couldn’t do what they could do, even though they recognized they had disabilities. There were people who said, “I want to work in the library and help people who have trouble with the printer when it jams,” or, you know, it didn’t matter what it is. People just wanted to use what they could use to be able to contribute to the life of the home. But yet we have this thing, this sense that we have to provide safety and protect everyone, and by protecting everyone, we try to keep them safe and don’t allow them to do what they’re able to do. And I think that’s one thing I would like to see.

So I have a couple of ideas that I hope don’t fall on deaf ears, because I think we really have some important changes to make. One is, what’s the difference between health care and a living community, right? That would be one thing. The other is the point of the article: We focus on quality of care and not quality of life. So the metrics, Kevin, are all deficiency-focused, right? They’re on wounds, ED admissions, falls, and antipsychotic medications. What if we looked at what was right about the nursing homes? What if we looked at, like in the story, where his caregiver, Susan, would bring in NFL Sundays and bring in popcorn to share with residents on days where there were no activities? What if we looked at some of the strengths of things that facilities do well instead of just deficiencies? What if we looked at quality of life in addition to quality of care, right? What would that look like? I think that’s a really important thing.

My other major concern, you know, aside from that balance, was when regulators come in, they often try to make things tighter, and some of the regulations that they put on facilities make it harder and worse for residents in the long run. An example of that is demanding staffing levels. You can’t create something out of nothing. If people aren’t there, you can find people and you can find facilities, but if people aren’t there to work, that isn’t going to make it any better, and it’s going to reduce the financial resources of the facility.

The other example I always think of in long-term care is HIPAA, and I think HIPAA wasn’t very well designed for long-term care. It’s designed for a hospital. But when you think about HIPAA in long-term care, people form friendships. They live on a unit, and then when somebody disappears and goes to the hospital, and they say, “We can’t tell you what happened to that person,” that’s someone they care about. And because they’re not on the record as somebody who can have protected health information, they wonder if they’ll ever see the person again. The person in the hospital wonders, “Will anyone, you know, does anyone care about me?” And they’re not designed to understand that it’s like a neighborhood, where people come together and care for one another. I’ve seen residents who lived in a facility for over 20 years die alone because the staff wouldn’t share with their friends what was going on. And again, I think that’s a health care thing and not a living community thing. I would really like clinicians to understand that those friendships are very real to the people who live there. They’re not just all residents, and we need to really do a better job of understanding that.

Kevin Pho: Now, where can we start, and what will be some first steps in implementing some of the ideas that you just discussed?

Carol Podgorski: OK, well, instead of swooping in with regulations, I would like to take a strategic look at it and start by looking at the whole thing, instead of fixing what’s wrong, and also understanding what works well, right? There are certainly federal guidelines and state guidelines that nursing homes have to adhere to, but those aren’t negotiable. But what is negotiable, Kevin, is how they do it, and the how matters so much more than the what, right? What are the principles? What are the values that are going to guide a facility? Are we going to understand the value that families have? Are we going to see families as annoying people who are visitors, who just take more time away? Or are we going to see them as somebody who contributes to shaping the lives of the residents and the facilities, right? That would be one thing.

The other thing I’d like people to do is to really understand that we can’t separate the health of a resident from the family. Residents and families are embedded within family dynamics, and they shape health outcomes. If we only look at the resident without understanding that resident in the context of his or her family, we’re missing out on understanding a lot about what shapes that person’s health beliefs and health behaviors. As a family therapist, I just feel very strongly about that.

And the other thing is person-centered care. With the age-friendly health system focusing on person-centered care, it’s hard to understand how we can do that without understanding what is the role of the family, what is the relationship of the family, and how do we tend to the family’s needs as well as the residents’ needs. Residents want to take care of their family members, even though they’re the target of care. There’s a bond there that we really need to understand, and I think we need to welcome families and look at them in a different way. They’re really an asset to long-term care. In a short-staffed industry like it is, we really need as much help as we can get, and I would really like to see facilities do a better job embracing families and what they can do.

Kevin Pho: We’re talking to Carol Podgorski. She is an associate professor of psychiatry, and she wrote the KevinMD article “We need to re-examine quality-of-life metrics in nursing homes.” Carol, what’s your take-home message that you want to leave with the KevinMD audience?

Carol Podgorski: Let’s look at quality of care versus quality of life. Are nursing homes hospitals, or are they living communities? How do we balance the need for population health versus autonomy and what residents are looking for? Let’s focus on strengths and not just deficiencies, counting what’s wrong. Imagine going to work every day and having your work measured by how many mistakes have been made instead of what value you’ve contributed or how you’ve made a positive difference in someone’s life. I think that’s what I would really like people to focus on. And again, the importance of family, and how they’re not just intrusive visitors, but they’re really a whole informal layer of care that adds so much to the facility. I think just formally recognizing that would be a really, really important thing.

Kevin Pho: Carol, thank you so much for sharing your time and insight, and thanks again for being on the show.

Carol Podgorski: Thank you so much.

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