Ericka Cruz Guevarra: I’m Ericka Cruz Guevarra and welcome to the Bay. Local news to keep you rooted. If you have a loved one who needs 24 over seven medical care, getting them into a nursing home in California can be really difficult. Nursing homes and psychiatric facilities are dealing with a huge staffing shortage, and it’s leaving some of the sickest, neediest patients with few options.
David Alter: As a society, we’re not set up in a way to care for people. At a certain point.
Ericka Cruz Guevarra: While patients wait for their chance to get into a nursing home, they’re increasingly getting trapped in hospitals for weeks, months, and even years. Today, we’ll hear about a man in Berkeley who tried for years to get his wife into a nursing home and why the hospital has become one of the only choices left.
Lesley McClurg: David and Lisa Alter are a couple who met, I think, in their early 20s.
Ericka Cruz Guevarra: Lesley McClurg is a health correspondent for KQED.
Lesley McClurg: They live in Berkeley. They were a lively, well-connected, community oriented couple. They did a lot of adventuring.
David Alter: Where you go skiing and mountain biking and camping and stuff like that.
Lesley McClurg: And they love to go to live concerts.
David Alter: Chris, Isaac and one. You know, it’s like a lot of Tina Turner. And at one point it was, you know, there’s a Joan Jett phase, you know.
Lesley McClurg: They ended up having two kids. And I looked back just last night actually at some family videos and, you know, really sweet, kind of very conventional sweet family videos. And then things started to go a little bit awry.
David Alter: Once the kids were born and stuff, she was starting to struggle.
Lesley McClurg: Lisa started to forget things. She started to struggle at work. She started to struggle to parent in a sense that she would just kind of disappear, literally, physically kind of erratic behavior that David really couldn’t figure out what was going on. And then in 2011, she was diagnosed with Huntington’s disease. When Lisa was diagnosed, she was 45 years old.
Ericka Cruz Guevarra: Tell me a little bit more about Huntington’s disease. I’m actually not super familiar.
Lesley McClurg: Yeah, so it’s a neurodegenerative disease. And over time, basically the brain and the body stop working. So very slowly over time, you know, you kind of lose function. It’s marked by kind of writhing and twitching. That’s sort of the characteristics that are kind of most known. But today, you know, Lisa can’t walk, she can’t eat, she can’t talk, she can’t communicate. It’s a slow and painful decline.
Ericka Cruz Guevarra: I know over time, David was sort of doing a lot of things to try and help Lisa when things I guess started to go awry. What were some of the things that he was doing to try and help her situation?
Lesley McClurg: They were really fortunate in the sense that they have a big family. They have a lot of friends. They were quite well connected to their community in Berkeley and she was quite active.
David Alter: I had an email list with over 40 people on it. Here’s the things that you know. Can you take her to the Y? Can you you know, she she wants to get her hair cut.
Lesley McClurg: And then over time she lost, you know, kind of the ability to walk. But he would still try to walk with her. So he had this sort of large belt that he would help kind of keep her upright with. And he would, you know, as much as possible, try to give her a good quality of life. You know, over time, that group of friends and family and support system kind of dwindled as the work became more challenging and for some, you know, kind of physically impossible.
Ericka Cruz Guevarra: In September of 2020, Lisa had a really terrible accident. What happened?
Lesley McClurg: It was that fall that we can all kind of remember when the state was on fire. There was the Orange Day. We were in the middle of the pandemic. David was kind of losing his mind before this.
David Alter: It’s kind of like when you have an infant, when you know those first few months and you’re kind of always exhausted and you frequently feel like you’re just not making great decisions. It’s like that, but it’s not getting easier. It’s getting harder.
Lesley McClurg: The way he remembers that is he was in the kitchen and he saw Lisa out of the corner of his eye, which worried him. She shouldn’t have been sort of moving around the house without assistance. And so he was going to dry his hands off at the kitchen sink. And then he turned to to look at her. And by the time he made that turn, he heard her head crack on the linoleum floor.
Lesley McClurg: And so he immediately went to try to find some bandages to wrap her up, and then race to the emergency room. This was not an unusual, though occurrence. You know, that was a particularly bad occurrence, and that she was diagnosed at the hospital with a brain bleed. But he said at that time, it wasn’t unusual for them to go to the E.R. twice a week because she was falling.
David Alter: We wouldn’t go to the E.R. for all of these because they were too frequent. So I get up and I patch her up. I would use suture strips or even sometimes Krazy Glue to take close cuts. You know, and we deal with it in the morning because it was just is too frequent. You know, I mean, these things happened a lot.
Ericka Cruz Guevarra: It seems like at this point, David sort of comes to realize that he needs more help, that Lisa needs more help. What kind of help did Lisa really need, exactly?
Lesley McClurg: I mean, I think at this point he was at the breaking point, I think a year or two earlier than that, he realized that he needed help. And David was in the process of attempting to do that in the sense that he had reached out to literally, he says, every nursing home in the state and written them letters.
David Alter: I want you to meet my my wife, Lisa. See picture above a vibrant woman, wife, teacher and mother of two beautiful children who is diagnosed with Huntington’s disease.
Lesley McClurg: And he showed me sort of, you know, personal letters with pictures that made, you know, Lisa and in his family look like a really beautiful, beautiful couple with two kids and living this sort of vibrant life. And now she needed help because she was in this, you know, stage of her disease. And he received letter after letter after letter denying their request for a bed for Lisa.
David Alter: It’s funny, you know, at first you’re thinking, oh, you know, I’m going to go shop for a facility. But I had heard all the stories about how this, you know, how hard this was and stuff, but it didn’t sink in. And then I’m calling and people are very nice and polite, but I’m going nowhere.
Lesley McClurg: So he knew that she needed, you know, 24 hour basically supervision. And then at this point she needed help. You know, bathing, going to the bathroom, eating anything, basically because he hurt her limbs at that point and her brain were not functioning. You know, at one point he hired a consultant to help him. That didn’t work.
Lesley McClurg: If any hired a lawyer to help him, that didn’t work. Then he reached out to his legislators. That didn’t help, all to try to get into a nursing home. Right? Because he has insurance, he does qualify. Lisa qualifies, to get that kind of care. And yet, the centers, the nursing homes were telling him that they didn’t have any long term beds for Lisa, and so he didn’t know what to do.
Lesley McClurg: So he started reaching out to advocates for the Huntington’s Disease Society. And at that point, they started to tell him that really, the only option that he might have is to leave Lisa at the hospital.
Ericka Cruz Guevarra: What does David say about what that was like for him to hear that that is his only real option?
Lesley McClurg: I think the fairest way is sort of flabbergasted. And I think at that point he was sobered, right. He had tried everything else. And so he when he heard that, he thought, Jesus, that’s awful. But maybe that’s what I have to do.
David Alter: I remember sitting in the car in the parking lot at Kaiser and calling one of the social workers I know, and like, just crying like, this isn’t right. Like I shouldn’t be doing this. Are you sure this is, you know, and just trying to get talked down? I mean, it’s just nothing about it feels right.
Ericka Cruz Guevarra: I mean, he chooses to leave his wife at the hospital even though she’s ready to be discharged. Right. And this is something that even advocates are telling people to do. Why is that? Why are advocates saying that this is the best option for people in this situation?
Lesley McClurg: It’s often their only option.
Maura Gibney: Pretty much the only way that you can get into a nursing home in California is if you’re being discharged from the hospital.
Lesley McClurg: Maura Gibney: is the executive director for California Advocates for Nursing Home Reform, and she told me that this is, unfortunately, advice that they give fairly often. Sometimes it’s the only way to take care of a patient like Lisa.
Maura Gibney: And people are really disappointed when they call us, because they’re calling to help, you know, for us to help them find a nursing home for their loved one. I mean, I’m just thinking about the last few years of me talking to consumers. I don’t know anybody that’s gotten into a nursing home any other way.
Lesley McClurg: A hospital is going to have more resources. They have a whole discharge team that can take care of this. They’re going to have more connections. They’re going to be able to work with the insurers easier potentially, and hopefully, you know, find a bed. Advocates know that that patient will be safe in the hospital, even though it’s a burden and not necessarily a fair burden. It’s a broken system to put that burden on the hospital. But that is sort of the the situation that we’re in.
Ericka Cruz Guevarra: Coming up, why patients like Lisa are being left behind. Stay with us.
Ericka Cruz Guevarra: Are there a lot of people in this situation, Leslie? Like how common, I guess, are stories like Lisa’s, where these patients are waiting for the care that they actually need?
Lesley McClurg: That’s definitely becoming more common in 2022. The average length of stay in a hospital across the country increased by about 20%. That’s according to the American Hospital Association. And every day in California, 4500 patients are stranded inside hospitals. That’s according to the California Hospital Association.
Lesley McClurg: So this problem, this problem of people getting stuck in hospitals is getting worse. The data shows that nearly 10% of hospital patients are facing discharge delays of at least three days. So you’re cleared to go home and you get stuck for about three days.
Lesley McClurg: I visited a hospital in San Diego, and that hospital has a psychiatric patient with some physical issues as well, who’s been there for more than two years. And the California Hospital Association estimates that this is costing about $3.25 billion per year in avoidable costs. Right. These people shouldn’t be in the hospital.
Ericka Cruz Guevarra: What we’re talking about here are lots of patients with high medical needs waiting in hospitals to get the care that they actually need, right. But why is it so hard to get patients that care that they need in these nursing homes, in these psychiatric facilities?
Lesley McClurg: I think it’s a two fold issue. The demographics of the country are changing. Boomers are getting older. You know, they’re aging. They’ve got more health issues. They need more care. Simultaneously, we haven’t trained enough people to take care of that population. And this was true pre-pandemic. Right. And then for the last four years, we’ve heard about the staffing shortages in health care.
Craig Cornett: But the problem got significantly worse during Covid and we have not yet recovered.
Lesley McClurg: Craig Cornett is the CEO of the California Association of Health Facilities, which is the industry group that represents nursing homes.
Craig Cornett: Before Covid, there were about 142,000 of workers in skilled nursing facilities in California. That number dropped to 125,000 during Covid.
Lesley McClurg: The work is challenging. The patient population is difficult. The pay is not as good. It’s not as glamorous as other sectors of the healthcare industry. And so it’s been challenging to staff these parts of the industry, and they are trying to improve the situation. But unfortunately it is a major, major issue that’s not going to go away anytime soon.
Ericka Cruz Guevarra: Lesley, what factors affect a patient’s ability to get into a nursing home faster? Like are there types of patients that nursing homes would prefer to have that maybe wouldn’t cost as much?
Lesley McClurg: The ideal patient for a nursing home is someone who is on Medicare. So a senior my aunt is a perfect example. Recently she fell. She broke her hip. She’s 89 years old. She went to the hospital. She was discharged in a couple of days. She went to a nursing home.
Lesley McClurg: She was in and out of the nursing home in two weeks. Her Medicare paid for that, which reimbursed at about $1,250 a day. And then that bed can be turned over for someone else two weeks later. Unfortunately, Lisa is the least attractive kind of patient because she could be there for a very long time.
Lesley McClurg: She’s not on Medicare because she’s not a senior. She’s on Medi-Cal, which is the state’s insurance. And when she goes in, Medicare will reimburse at about $350 a day. And she’s a very high needs patient.
Ericka Cruz Guevarra: And so she just costs more.
Lesley McClurg: Yes. Maura Gibney says this is not a bed issue. She said this is a money issue.
Maura Gibney: And so it really is just a profits issue. How much money are they going to make off of this person?
Lesley McClurg: And this is based on how much money a nursing home can make. And a short term Medicare patient is going to be much more attractive than a long term Medi-Cal or Medicaid patient.
Maura Gibney: Like they they’re going to make more money by keeping the bed open for a few days, avoiding a long term Medi-Cal patient, and then just getting, you know, a short term person instead.
Ericka Cruz Guevarra: And the industry denies that they’re doing this right?
Lesley McClurg: Absolutely. It’s illegal. They have been reprimanded by the state a few times in the last year for doing this. So the industry says they’re not doing it. The state says stop doing it. And the advocates say you’re absolutely doing it.
Ericka Cruz Guevarra: I mean, what’s being done then to solve this problem?
Lesley McClurg: Craig Cornett told me that there are a couple positive things happening. California is spending about $26 million to recruit more health care workers to help kind of fill this gap. This will hopefully attract about 5500 certified nursing assistants by 2027. That’s not nearly enough, but it’s, you know, 5500 people.
Lesley McClurg: State lawmakers are also considering a new bill that would allow select community college districts to offer nursing degrees. This kind of lowers the bar for entry, and that would make it easier for workers to enter the health care industry. Again, he said that neither one of these are, you know, completely going to solve the issue.
Ericka Cruz Guevarra: How then, I guess, do you get a patient into a nursing home given all of this? Leslie.
Lesley McClurg: In this particular case, David decided to, you know, leave his wife in the hospital. She ended up staying there for four months. Eventually they did find her a home, but it wasn’t in a nursing home. They found her care in what’s called a, boarding care or a assisted living facility, where she’s unfortunately not getting the care that she really needs.
Lesley McClurg: It’s more like an apartment building than what I would think of as a medical facility. And they don’t offer any medical care, so they do feed her there. She does have supervision. There are aides, but but not technical nurses.
Lesley McClurg: So they will monitor if you have to take pills or you have to take medicine throughout the day. But if you need any particular treatment, you need to call and arrange to have doctors or nurses come to you.
Ericka Cruz Guevarra: You actually went there to visit her with David, right? What was that like?
Lesley McClurg: You know, she’s 60 to 70 pounds. Her body was very contorted into a position that you couldn’t even imagine the body could be in. She was nearly asleep when we got there, so I didn’t really get to interact with her, but it was a very, very sad situation. You know, and in David’s opinion, he thinks, you know, that she’s probably not getting nearly the nutrition that she needs to sort of sustain.
Lesley McClurg: It’s very depressing for him to visit her, although he does try to go once a week because he doesn’t think that she’s getting enough social interaction. He tried to put a movie on for her. He tries to make that visit, you know, an enjoyable experience. But I think he would say, and from what I could see, she’s not really there.
David Alter: I don’t know, there’s, there’s I mean, there’s nothing good about this situation. There’s nothing is the disease. I mean, she could she could be in that bed for five more years. She has no quality of life. It’s not like she can. She can even watch TV or, you know, she can’t operate a remote. It’s like I come there and I turn on some music for her. I come there, I put on a movie, but, you know, it’s like the people in the facility. I asked them to do that, but I don’t know if that happens, so I kind of think it doesn’t.
Ericka Cruz Guevarra: Yeah. I mean, I was going to ask like, how is David’s spirit or her mood?
Lesley McClurg: To David’s credit, he has an incredible person and has a very strong constitution. And I really saw that during the interview and in ensuing weeks of getting to know him. But he’s crushed. I mean, he’s crushed by the system. He’s crushed by his efforts going nowhere. He’s really, really, really trying to get her good care. He’s really trying to do what’s best for her.
Lesley McClurg: And he feels really, really stuck. And defeated was the word he used. He’s got the financial resources, he’s got the familial resources, he’s got friends. And he was, you know, working a full time job as a software engineer, raising two kids. And he still couldn’t find her care.
David Alter: As a society, we’re not set up in a way to care for people at a certain point.
Ericka Cruz Guevarra: I mean, what do you make of this story? Leslie? As a as a health reporter. I mean, I just feel like we’re talking about some of the sickest, some of the neediest patients in our society. And you would hope that those folks could get the care that they need, but it just sounds so impossible. Like and concerning. Frankly, I.
Lesley McClurg: Left this story very deeply questioning whether we care about this population. If you can’t really fight for yourself, you’re definitely not going to get care. And even when you can really fight for yourself, this is a great example of that. You’re not going to get the right care. So I think as a society, we really have to ask ourselves, do all people deserve to have, you know, some kind of quality of life?
Lesley McClurg: The other main thing that I really got in talking to David about this story is, you know, he knows that Lee says quality of life is not good right now. You know, he really grappled with the question about whether or not she should still be alive. Should she be still getting care?
Lesley McClurg: Now, obviously, that’s a very sensitive and challenging conversation to have, but it’s way harder to have right now than it would have been if they would have had that conversation 20 years ago when she was first diagnosed, and when she was still lucid enough to have put it in her own request for what kind of quality of life she would want. So I really think this underlines for all of us that we should have those conversations with our family members when we’re in good health.
Ericka Cruz Guevarra: Leslie, thank you so much for sharing your reporting with us. I appreciate it.
Lesley McClurg: Yeah. Thank you.
