‘Quality of Life is Medically Necessary’: What Nursing Home Residents’ Families Want in a Post-COVID World

For Melody Taylor Stark, navigating life after her husband Bill required long-term nursing care hasn’t always been easy, but with the help of some caring staffers and a little bit of creativity, the couple was able to settle into something like normalcy.

Friday nights out at a restaurant became takeout shared over a table that the facility’s staff reserved just for them, off in a private room with a tablecloth and flowers. Sunday mornings at the kitchen table became coffee and newspaper time in the dining room, and thanks to wheelchair-accessible rideshare vans, the couple was even able to go out for movie and dinner dates.

Then COVID-19 shut all of that down.

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After months of advocacy and evolving regulations in her home state of California, Stark was eventually able to conduct a scheduled window visit with her husband toward the end of August. But prior to that, their frustration with not being able to visit in person grew to the point where Bill’s lung cancer treatments actually became a major bright spot in their lives — because Melody was able to spend time with him during his infusions.

“Here we are in the cancer infusion therapy center. This is not Disneyland. This is not our favorite restaurant. This is not our favorite beach,” Stark told SNN. “And he’s so happy to be able to see me in person. Even though we can’t hug, we can’t touch — for two hours, even in a cancer clinic, his mood is so elevated, and that glow lasts for a couple of days.”

SNN spoke with Stark in late August for an in-depth discussion on her years of experience in long-term care alongside her husband, and how her struggles and victories could provide lasting lessons for operators across the country — key factors as the sector looks to regain the public’s trust, and adapt their care models to a permanently changed landscape.

The conversation occurred before the Centers for Medicare & Medicaid Services (CMS) released updated visitation guidelines that acknowledged the psychosocial strain the ban had placed on residents on their families, though facilities can still shut down based on outbreaks and high rates of community spread.

Over their years in the system together, Stark and her husband have had many discussions about the differences between quality and quantity of life, she said: Would he rather spend five years in a nursing facility, receiving significant medical interventions but sacrificing a level of personal freedom, or ease off treatment and simply enjoy whatever natural time he has remaining?

Those discussions have now jumped into the mainstream, as policymakers, industry leaders, health officials, and resident advocates alike call for significant structural change after COVID-19 exposed a variety of simmering structural problems in long-term care.

While there isn’t a one-size-fits-all answer, Stark believes that any major shifts need to have the residents’ autonomy and dignity at their center. She rattled off the life stories of some of the people in her husband’s facility — a woman who raised three kids on her own at a time when that wasn’t as common, another who was an early female field reporter in New York. For his part, Bill was a member of “the old guard in the dentistry field,” teaching at the University of Southern California.

But while these stories are likely familiar for anyone who’s spent time in senior care, Stark observed that our wider cultural attitude toward the elderly is that those stories stop once you enter a facility — even though there could be many more years of life ahead.

“Quality of life is medically necessary,” she said.

Let’s start out with some ideas you may have for changing the space based on your experience so far.

They need to go through what their clients are going to be going through, and experience it. I wish in places like nursing homes, that there would be something that would parallel that experience … new staff coming on board, I think, for two weeks, they’re assigned a bed in the nursing home.

Of course there’s some modifications to it, but they can’t get up and go to the restroom by themselves. They have to wait until someone comes in, and they’re eating the food everybody’s eating. They are probably using like M&M’s or something, but having to take meds, and having to manage being in a wheelchair and sit through bingo — not my favorite, but just experience what it’s like there — and what it’s like that when they say they have to go to the bathroom, and they’re calling and calling and it’s an hour before somebody shows up.

Just to get a little bit of sense of what that change in quality of life [looks like], and that you’re in half of a roughly 10-by-20 room with a roommate who’s got people coming in and out and visiting, and maybe the roommate has got some issues. My husband had one roommate that would spend sometimes two hours just calling out “help me, help me, help me” — and he was not cognitively impaired. He was just a pain in the behind.

All of a sudden, your life changes quickly because most of the time with skilled nursing facilities, as opposed to independent living or assisted living, you don’t always have time to shop them before you go in. You’re like my husband: You were here at the house one day, and then you’re in the emergency room. And while you’re there, you may go right from the emergency room to a SNF, or you’re in a hospital room for whatever length of time, and all of a sudden they’re saying: “Oh, you need to choose a nursing home.”

I had to do it at three o’clock in the morning in an emergency room one time, and your mind’s not thinking about quality or going onto the internet and seeing who’s got five stars and all those things. You need what you think is a safe place to have your loved one literally shipped off to in the middle of the night, where they don’t know where they’re going. They’re being admitted in the middle of night. They’re in an ambulance. There’s this whole sense of disorientation — right from the get-go, it’s a very traumatic experience.

That’s really emblematic of the bigger issue we’re seeing in long-term care more broadly: Nobody thinks about nursing home quality or resident experience until it’s right in front of their faces — whether that’s someone like you, trying to find placement for a loved one, or lawmakers now realizing the extent of the problems in the landscape amid COVID-19. I think that’s also where a lot of the trouble, and a lot of the anger and a lot of the confusion, comes in — the fact that people’s expectations of long-term care don’t really match what the reality is.

Exactly. Exactly — like that night when it was three o’clock in the morning making a decision. I had a social worker; she actually worked for the insurance provider, with HealthCare Partners. And she’s going, “Oh, you know, this facility and this facility is good, and they’re close by and so forth.” So she said, “You know, he needs to be safe.” My husband has post-polio syndrome, and it had gotten to the point where he was falling a lot when he first went into the nursing home, and I just trusted what she said.

I come to find out part of her job was helping to fill the beds at that nursing home, and within four months, I had a 10-page letter chronicling and documenting horrible things that went on there that went to the Department of Public Health — who came back and said, “Oh, this is all unfounded.” No, no, it wasn’t. I was close to calling adult protective services a couple times.

There’s all of those things that make it stressful, and for family support, I should have been the fun person coming in. I should have been the moral support and the cheerleader, and a lot of our visits back then started with business: “Let’s take care of who did what, and what I need to address, and why I need to go to the nurse’s station before I can come back and say: Okay, honey, let’s watch television or hang out together.”

So you were able to transfer him to a different facility?

Well, with that one, he was in a situation where he was able to be back at the house. But during the six weeks he was here, I just kept saying, “I still don’t feel he’s ready to be released to come back home.”

We made arrangements; we thought he was going to be here long-term, and within about six or seven weeks after that, he was retaining a lot of fluid and … he went into ICU for about a little over a week, where they drained about 40 pounds of fluid in three and a half days from his body, and also from his lungs. That’s where he transitioned to the nursing home where he currently is, and that was in January 2016.

So [the nursing home] at that point became our home. We always say where I am right now is our house, and it’s where I sleep and shower and have coffee before work in the morning — and home was with him. I’m working from my house right now, but my office is in a location where I was able to leave the house in the mornings and stop by and visit with him.

When he was at the house, we get a couple of print papers, and we always would just for fun read the horoscope. So that was part of stopping by in the morning, keeping that normalcy going, and then I would go to work and then at night I would come back and I’d be there around dinnertime, so I’d bring a sandwich or salad with me and we’d have dinner at the same time and do something in the evening — board game or watching television, just hanging out like we would if we were here at the house.

And then on Fridays I would pick up some kind of takeout — could be KFC, could be something more upscale, one of our favorite steakhouses or something like that. We had a table in the activity room that wasn’t being used on Fridays, and staff are really sweet: They put a tablecloth and flowers and so forth. That was our Friday night date place.

Once in a while, through the miracle of Lyft having wheelchair vans — he doesn’t transition out of the wheelchair — we were able to go out to the movies or a restaurant or something like that. Then Saturday morning, or Saturday during the day, was kind of my getting caught up on errands and grabbing a gulp there, and then I’d go back at night.

Sunday mornings at the house were big pots of coffee, and we get the L.A. Times and we get another local newspaper, and we’d sit here at the table. The whole morning was going through the Sunday papers — much bigger at that time — and then one of us would make brunch. So that transitioned into Sunday mornings of packing up coffee thermoses and bringing the papers, and we’d go to a table in the dining room, and that was our place.

We hung out, and then I’d get a guest tray, and I’d also bring some condiments that might make the lunch a little bit better. At the end of 2012, I had surgery — I was out, I wasn’t there visiting for a few weeks, [the kitchen staff] wouldn’t let anybody else use that table on Sundays. It was our place.

These things became normal. I developed friendships with some of the other residents who were there, even with the staff. It’s a small facility — and not just the nursing staff, but admin, housekeeping, kitchen staff, the whole bit.

Anyway, during all of this journey and support, I was seeing a lot of things that like: This could just be so much better, you know? They have staff, but it seems like so much is what’s expected of a nursing home. You get up when they tell you to get up, they get you dressed or somebody helps get you dressed, and then if you want to go play bingo, or you want to do arm circles, or you want to watch “Price is Right” — can we put some more life and energy into it?

I think in more recent times, the need for tech support is huge. My husband and I have been experiencing that — although we both use our cell phones, a lot of the time, it’s something that [in normal times], I’d be there at night in order to problem-solve it. Where he is, once every 15 days, the passwords need to be updated, and usually he was very good with doing that. He also had a Roku stick, and so we would watch some of our favorite things on Netflix and so forth.

The password changing thing is wild to me — I’m 30 and healthy, and I have trouble remembering which passwords I’ve used with which account when it comes time to update them. I can’t imagine having that burden as someone with cognitive or physical disabilities, on top of isolation.

Exactly. It’s one thing if it’s the visitors and so forth, but I think the WiFi should be [more permanent] if you’re [living] there, and you’re there long-term.

He used to read a lot — he was like a three-or-four-books-a-week person. Since he’s been in the nursing home, he’s more getting caught up on movies he hasn’t seen, or he gets into some Netflix or Amazon Prime series. Some of them we’d watch together in the evening, and others might not be things I was interested in, so he’d watch it during the day in between PT and so forth.

This was our life for a long time, and then COVID showed up and that came to an abrupt halt. It’s the tech part, and also in conjunction with … just the decline from the isolation and the loneliness. With one of the medical conditions my husband has, sometimes there’s some numbness in his fingers, so putting those passwords in once every 15 days, remembering how to do it when you’re really depressed — that could be a challenge. Something went wonky with the Roku stick, which I haven’t been able to figure out yet. I was able to get it back home, but that’s another thing. I wasn’t able to be there to help to problem-solve that — so he’s just been on the regular boring TV channels.

They really didn’t bump up a lot of things for activities at that time, other than you can wheel yourself to the door of your room and have hallway bingo.

That’s been challenging. It might be: “Okay, who’s your CNA on tonight? Oh, good. She’s there. She knows. She’s very tech-savvy. I can walk her through — put her or him on the phone and I can walk them through what to do with your phone to get it back on track. But we had several days where we were using a landline because something had gone wonky with his phone.

The tech investment piece has alway been interesting for me covering this space — even basics like WiFi or a company pages on social media have historically been seen as needless extravagances for nursing home operators. My colleagues who cover home health and senior living write about the cool things providers in those spaces do with tech, and nursing homes are decades behind.

When lockdown happened at the nursing home where one of my and my husband’s friends worked, the nursing home immediately went out and bought a few tablets — at least to start putting a bit of an effort into family contact. Where my husband is, I didn’t see them do that until mid-July, and honestly, it was after I started being more aggressive with advocacy on safe visits.

At the end of June, the Department of Public Health here in California issued a letter with how to have people come safely into a SNF, and that would be even like student nurses, outside practitioners, so forth, but it also addressed visits. It said: For inside visits, this is the criteria that you meet, and this is how you provide the visit. We’re in L.A. County, so a hotspot that knocked out the inside visits. If you don’t provide inside visits, you shall provide outside visits that are [at a] safe distance, and here’s the criteria that you use, and here’s how you put it into place. And that was June 26. And I have formal complaints into the state Department of Public Health, working with the ombuds, working with a watchdog agency here in California that’s really been helpful and supportive.

But it wasn’t until that started all happening that they finally got one tablet, and the family visits for that tablet, I think, are limited between like two or three hours during the day, maybe 10 to 2, and it has to be arranged through one of the activities coordinators. It’s like you’re doing it just to say [that you can].

To me, it’s like when a business puts a grab bar in a bathroom, and okay, we’re ADA compliant now. Put a little more effort into it. It really smacked to me, again, of the warehousing mentality of facilities.

How would you redesign the post-acute and long-term care industry based on your experiences navigating the landscape with your husband?

You enter a SNF quickly, and when you get in there, there’s no one to really help you navigate. You’re sitting in your room, waiting sometimes for hours before anyone comes in, and it’s oftentimes one of the nursing staff saying, “Hi, we’re here to do a body check.”

Some of them, what I call higher-quality nurses who I adore, will come in and introduce themselves and talk to the person for a second or so before they start getting down to what they need to do for documentation. But I’ve seen others come in and they’re just: “Hi, I’m your nurse tonight, and this is what we’re going to do.”

It’s very cold. So the patients themselves have you this very traumatic experience going on of being disoriented, and then the families — there’s no explanation of navigating. I know here in California, and probably across the country, the primary care physician doesn’t go into the nursing home. There’s another team from the health care insurance that works out of the nursing home, but they’re actually not part of the nursing home staff.

That makes a difference as well, because someone comes in one day and says, “Hi, I’m Dr. Taylor Stark,” and they don’t explain that Dr. Taylor Stark doesn’t work for the facility, but works for UnitedHealthcare in managed care. All these things start coming — You don’t know who or what’s what. People are coming in and out of the room. They’re having you sign papers without really going over them.

I think [having] a concierge on staff, or a liaison. In recent days, there’s been no communication from the facility unless there was a problem. For example, my husband had some type of a lesion on his leg where they needed to bring a specialist in. So they called me about that. But there’s no other communication as far as: “How’s your husband doing?”

Bill and I have the advantage of at least being able to talk on the phone, where there’s a lot of people there, that’s not the case. I think also designating the essential family caregiver, so that should there be a situation where there’s another lockdown moment, that you have someone who can come in and safely be able to have some good family contact. I think being mindful of the individual … [employing] more person-centered models, maybe trying to have one person in a room, letting it be less institutionalized.

Activities that are more than bingo. When Bill would get a new roommate, they’d come in and [say], “Oh, we offer this and this and this and this,” without asking the person: What are some things you like to do? Because of the cultural mindset, people are not always likely to say: “I really enjoy playing golf,” for example. They’re not going to say that.

Whether it’s a Wii, whether it’s using VR, whether it’s using the activity room or somewhere outside where they can do a wheelchair putting green — all of those ideas. I think people don’t even respond to that because nursing homes just don’t do those things, and they’re not encouraged, and they’re not offered.

It’s thinking outside the box, and then also thinking creatively inside the box — because outside the box sometimes can mean budget constraints, and I get that. So I think a lot of those elements, plus the tech support, [and] someone to help navigate around the facility.

Mental wellness is huge. That’s just a foreign concept at skilled nursing facilities. And I know here in California, it’s supposed to be part of their milieu. For people who are in custodial care, it’s supposed to be part of their milieu services, and they have no idea what that means. When even asking for a friend about a year ago, who was telling me she was depressed and so forth: It’s like, well, we can have a psychiatrist see her, and then they can put her on some meds.

No, she needs somebody. She’s here, she’s estranged from her family, she’s bedridden. She needs somebody — forgive the language — but somebody she can bitch to, and somebody who can help her emotionally navigate what she’s going through. I get these [blank] stares back.

The same thing happened with my husband when I was seeing a lot of the impairments that he was dealing with, and the depression he was handling.

With my husband, thankfully — we say thankfully — he has lung cancer and thankfully he’s in a wheelchair. The lung cancer treatment’s going great, by the way, but because of that, he has a palliative care team that’s been assigned to him, and on the palliative care team, there’s a clinical social worker who started having sessions with him.

With that being said as well, I’m required to go with him — happily required to go with him — for his cancer immunotherapy treatments. Here we are in a cancer infusion therapy center. This is not Disneyland. This is not our favorite restaurant. This is not our favorite beach. And he’s so happy to be able to see me in person. Even though we can’t hug, and we can’t touch — for two hours, even in a cancer clinic, his mood is so elevated, and that glow lasts for a couple of days. And then we’re back again to seeing some more of the depression.

I think mental wellness is huge. The essential family caregiver, tech support, being mindful of the individual — I think if I could change it that each person could have their own room, and that the rooms could be much less clinical and institutional than they are.

This interview has been condensed and edited for clarity.