Catherine Hawes: Assisted Living is a “Ticking Time Bomb”
July 30, 2013, 9:27 pm ET
Catherine Hawes is the director of the Program on Aging and Long-Term Care Policy at Texas A&M University. Weak regulation and inconsistent training standards could soon mean a surge in preventable deaths at the nation’s assisted living facilities, she told FRONTLINE. “[W]e’ve created a situation where it’s almost impossible for this not to occur,” she said. This is the edited transcript of an interview conducted on Nov. 10, 2012.
You’re one of the people that helped create one of the key tracking systems for what happens to people in nursing homes in the United States of America. Every single person in the U.S. in nursing homes is evaluated by a system that you help create. Is that right?
Compare that to the information that we can get on people living in assisted living facilities in the U.S.
You know, it’s interesting, I thought this was such a great idea and worked so well in nursing homes that I got a grant from the federal government to do the same thing for assisted living. Three states have adopted it.
Otherwise, there’s a paucity even of clinical information for care planning. So that’s one thing. You don’t really have good information on residents and what their care needs are, what their health care needs are, or what their preferences are for activities.
It also means that unlike nursing homes, where you have information systems and consumer rating systems that tell you something about the facilities in terms of quality indicators, in terms of staffing, in terms of deficiencies, you don’t really have that in assisted living.
In fact, it’s not even clear what assisted living is from state to state or even from facility to facility.
You wrote a paper called?
“Apples, Oranges, and Broccoli.” It had a more formal title about it: “Defining Assisted Living.”
I called it that because when we were trying to figure out what assisted living is or was, I had this image that it was apartment-style buildings where people had a lot of independence, and they were kind of [like] Driving Miss Daisy. They didn’t need a lot of assistance. They just needed a nice place to live that was safe. Someone would help them with meals and transportation, and that was all.
So I had this image of assisted living, and then we did the first national study, and of course that wasn’t what assisted living was.
We came up with a definition that showed there were basically four different types, but there are 20 different names across the country for assisted living. Even within states there are different names for what might be called assisted living, and none of them mean exactly the same thing.
In addition to this problem with nomenclature … there’s also widely varying regulation of these facilities from state to state. Can you tell me about that?
There’s no federal regulation … so it’s up to the state, and states have different conceptions of what the role of assisted living ought to be relative to nursing homes. They have different conceptions of what ought to be allowed and who are to be allowed to live in assisted living. And they have different standards sometimes based on the size of assisted living.
So the problem for a consumer is that there’s variation in the state definitions, but even within a state a facility has enormous flexibility as to what it does and what services it offers and what staffing it has.
I call it the problem of the tall, thin blonde. I could say I’m a tall, thin blonde. It doesn’t make me one. But if I say I’m an assisted living, I am an assisted living.
So for consumers who looked at the nomenclature of assisted living and think they understand it, it’s a real problem because every single one is different.
… Say I’m looking for an assisted living facility in California. What can I find on that facility?
I’m not exactly sure what the California system is like, but you can probably find out the name of the facility, probably the bed size of the facility.
If it’s a good system, in most states it would tell you whether or not it has a Medicaid waiver so that if you’re poor, Medicaid might assist in paying for services. That’s about it.
There are few states that also put up what are called deficiencies. And that means that in the inspection that’s carried out, if the facility is cited for not meeting a standard, it will list a deficiency.
Few states are very good about explaining the deficiency. When you see, “Doesn’t meet life-safety code,” do you know what that means?
Right. What consumer would know it means probably doesn’t have a sprinkler system, may not have fire extinguishers where they’re supposed to be, probably doesn’t have working smoke detectors? When you just say, “Fails to meet life-safety code,” and it’s a building code requirement, people look at it and they don’t think that’s serious.
So even when there are deficiency citations, they’re not written in a way that the consumers can understand what does a deficiency mean and how serious is it for our loved one. That’s a problem.
And compare that to what’s out there now for nursing homes for consumers.
In nursing homes, whatever you think of consumer information systems, the federal government has one that’s pretty sophisticated.
It’s called the five-star rating system, and it’s a little bit like Consumer Reports and it’s modeled on that, where you get multiple spoons and forks based on how good the service is.
The five-star rating system rates a facility based on the staffing, which we know from numerous studies [that] the level of staffing in the facility is the single most important predictor of quality of care.
We have information in the five-star rating system on the deficiencies, … the violations that a facility has meeting minimum standards. And you can look not only at what it’s been in the last year but what it’s been over time, and that trajectory is really important to understand.
And then the third thing it has are what are called the quality indicators, and that’s based on the process of care that’s available to a resident. Are residents physically restrained? Are there medication errors? And on resident outcomes such as what’s the percentage of pressure ulcers, or what’s the percentage of residents with few or no activities?
“It’s not even clear what assisted living is from state to state or even from facility to facility.”
The quality indicators are a pretty sophisticated look at what life is like from the residents’ perspective. And then you have stars one to five in each of those three areas, and then you have a summary across those. That tells you a lot.
Certainly I’m going to avoid the one-star facilities no matter what, because you wouldn’t send your dog there. Well, I mean, I really like my dogs, so I wouldn’t send them there.
And then the five-star facilities — particularly if it’s been five-star over time — then there’s some consistency to it being among the highest-rated facilities in the country.
The ones in the middle, it’s a little harder to tell the difference between a four-star and a three-star. What it does tell you, though, is I can make a list of the facilities in my county, and these are the ones I’m going to go visit. Because no matter what a rating system is like, you want to go visit the facility and see what it’s going to be like for your loved one or for yourself if you’re making that decision. Mostly it’s families making the decision.
In addition, there are states like Texas which have unbelievably sophisticated consumer information systems that most people don’t know about, although the five-star rating system will link you to it, that talk about complaints. And it’ll talk about complaints that have been filed and explain them and complaints that have been substantiated. …
And in general for assisted living, what do we have for consumers?
Practically nothing. You don’t have anything on staffing. I haven’t seen a consumer information system on assisted living that has staffing ratios yet. And since we know in nursing homes that’s the most important predictor, it’s almost criminal that we don’t have that.
But it’s based on the idea — that isn’t accurate — that assisted living residents are mostly well; they’re mostly private pay; they can take care of making their own health decisions; and if they don’t like a facility, they can move. So we have this image of who the resident is that doesn’t match what you really see in facilities.
… What’s different between the assisted living population and the nursing home population?
… Assisted living started out with this philosophy that people would be able to move in and age in place, so that it would be their home, as many families have told me, “until my mother dies.”
But when you really look at the data, you see that they help with medication management. … They’ll help with bathing. Sometimes it’s just standing by to make sure you don’t fall in the shower, sometimes it’s washing your back, but it’s helped by a person, and that’s about 70 percent of residents get that. And then dressing.
And these are what’s known as the early loss activities of daily living [ADL], so they’re the things that most of us who get old enough will have difficulty doing without some assistance. …
And that’s what assisted living is. It’s for people with early loss ADLs who are mostly physically intact but who have problems with decision making and knowing what’s safe and not safe to do.
So there’s a lot of early memory loss, short-term memory loss, a lot of impaired decision-making. And the studies vary from 40 percent of residents to more than 60 percent of residents. …
But it’s also not a population that’s completely independent and that doesn’t need any protective oversight. They take as many medications as people in nursing homes do. And they often take more psychoactive medications, which have tremendous side effects.
So it’s not as heavy care of population in terms of skilled nursing needs as you see in nursing homes. But assisted living still has a more impaired population than the general belief. …
So we’ve been listening to the earnings calls for a big, for-profit assisted living corporation, and the things that get discussed a lot on these calls are occupancy and revenue per unit, revenue per apartment. Tell me how that translates into the kind of people that wind up living in these facilities.
We did some focus groups in assisted living with residents and family members, but I also talked to the administrators who worked for some of the big chains, and they told me they were expected to have between a 35 and 40 percent return on revenues. I mean that’s huge. I don’t know any industry that produces a 40 percent return on revenues. Not on investment, on revenues. And what they say is they basically have to take all-comers.
Anybody. So that’s why, while you’ve got this population of people who need medication and bathing and dressing, you are seeing rising acuity in terms of more health conditions and more impairments and ADLs.
For example, … 38 percent need help with walking. Once you need help with walking, you’re eventually going to need help with using the toilet. And once you need that, you’re going to need help with transfers, and that means that you’re going to need more staff and better-trained staff.
More staff and better-trained staff pull you away from that profitability of a 40 percent return on revenues. You can’t have more staff and make that return, and that’s what administrators say is the conundrum for them: How do I take residents with greater care needs and not be able to staff up and not be able to have nurses? …
And in your research, from what you’ve looked at, does it appear that assisted living operators, if they don’t have 80 percent, 90 percent, 99 percent occupancy, that they are not making money?
Certainly if you’re not up at 90 percent, you’re not making money. That’s what studies of nursing homes have shown, and I have no reason to believe it is inaccurate in assisted living.
And when you look at the filings that these chains make with the Securities and Exchange Commission, you’re right, they all talk about how to increase their occupancy rate. And the short-term way to increase their revenues is they buy more facilities.
But when they buy more facilities, they’ve got to pay them off, which means they’ve got to take more residents. And because there aren’t that many residents who can pay what it costs, they’ve got to take more impaired residents and keep more impaired residents, and that fits with what public policy is trying to do, which is to keep people out of nursing homes and to reduce the utilization of Medicaid.
So you’ve got both public policy push, and you’ve got consumer push, and you’ve got pull from the industry. And that’s why everybody’s talking about an increase in acuity among residents.
What’s the danger in assisted living corporations’ taking residents who have really high needs, who are very frail, who are very sick, who need a lot of help, and filling their beds that way by taking that clientele? What’s the risk to those residents?
… Assisted living talks about the philosophy of helping people maintain independence. But to maintain independence, you’ve got to understand what someone’s baseline status is and what the interaction is of their disease, conditions and function. You’ve got to have a nurse, a physical therapist, a physician to help you assess those things.
… I’ll give you an example, because families don’t understand it either. They listen to the promise of the marketing specialists who says, “Oh, yes, we’ll change our services to meet the changing needs of your mother.”
And what you see is somebody comes in with Alzheimer’s, kind of mild, needs her medications managed … and needs meal preparation every day. But there’s no one there who goes and gets her if she doesn’t show up for meals. There’s no one who notices that she’s missing.
“I could say I’m a tall, thin blonde. It doesn’t make me one. But if I say I’m an assisted living [facility], I am an assisted living [facility].”
And the reason she’s missing is she’s scared that if she leaves her apartment, she can’t find her way back. And she’s not oriented to time, so she doesn’t know that it’s time for breakfast.
And I mean that’s a small thing, but over time that person will become malnourished and dehydrated, and then their skin is at risk. Their mobility is at risk. It’s just this spiral of getting worse; not more independent, more dependent.
And if you have staff that have got an average of 16 hours of training, and it’s mostly about first aid and CPR, they don’t understand that. It’s not like they’re ill-intentioned, they’re just not adequately trained. And in most facilities there’s no registered nurse who does have that training and does have that knowledge and can do that supervision. …
We’ve been doing our research on the assisted living business. We’ve seen a parallel between how hotel chains work and how assisted living chains work. … Tell me about how these two industries are similar.
It’s interesting because Marriott was one of the first to move into assisted living and residential care apartments. You look in Virginia, and that’s what they did. And then when their residents aged in place, it was like, oh, this isn’t just a hotel with some nice amenities. This is where we have to actually take care of people. …
But most of the chains are clinging to the idea that they can provide minimal services even as their population changes, because that’s how they keep occupancy and profitability up, and that’s a sad commentary. …
I toured a facility in southern California owned by the Emeritus Corporation, but it was originally built by Marriott. And what I’ve been hearing is that Marriott got out of the senior care business. Is that right?
… They thought they were going to have these sort of residential care apartments for the well-elderly … that they would have these light care residents who were social and needed to be around some other residents. And they quickly realized that’s not who was coming, and that’s not who people turned into within a year or two. … But families are the victims of this hospitality myth.
How are they the victims?
… They don’t have realistic expectations. If they’re like my mother, they’ve said, “Promise me you won’t put me in a nursing home.” They walk into the facility, and they’re guided through by the marketing person who makes a lot of promises about what’s available.
And they see in high-end assisted living a lovely place. They see the spiral staircase. They see the oriental rugs. They see the plants. They see the tai chi class and they think: “This is great. This is not an assisted living. She’s going to have her own room, her own half bath, although she wants her own full bath. She can bring her own furniture.”
It’s what I would like. I just want to have a nurse there and I want to have enough staff, and families don’t know to ask that question: What’s the staffing level? What’s the staffing level during the day? What’s the staffing level at night? And what’s the supervision like? Who’s passing the meds? …
They don’t realize it’s not a nursing home. It doesn’t have skilled nursing care. It doesn’t offer skilled nursing care with their own staff. Maybe they’ll bring it in with home health, but people often don’t know to ask for that.
The other part is that families often don’t know the trajectory of a disease. So Mother has mild Alzheimer’s, and the facility says to them your mother can stay here until she dies. That’s great for the family because it’s a horrible decision to make. It’s crushing to think about your loved one no longer in her own home or in your own home. …
But dementia is a progressive disease. It’s progressive cognitively. It often is associated with behavior that the facility will be unwilling to manage. It’s often associated with incontinence, not just the nice kind where you wear Depends and your (UNINTEL PHRASE). I mean the kind where you pee in the living room of the facility inappropriately, and they don’t like that in assisted living.
And so people end up being discharged to nursing homes, and they’re shocked. Or families realize that their loved one is not getting the appropriate care, has had some medication errors, is getting malnourished, that acute diseases are getting worse, and chronic diseases are progressing. And they realized they needed nursing home care the whole time.
People hear the bad stories about nursing homes and don’t realize it’s a bad nursing home. And so they turn to assisted living, which looks so much nicer, and it sounds so much nicer to say, “My mother’s in this assisted living facility,” than “I just put my mother in a nursing home.” …
What I hear you saying is that the folks who are going into assisted living are sometimes experiencing a much more rapid decline than they need to because they’re not surrounded by people who know how to care for them. Is that what you’re saying?
Yes. It’s surprising. Everyone thinks so you go into a nursing home and it’s the end of the world, it’s like signing your death certificate. Many people get better in nursing homes. …
In assisted living, you don’t have well-trained staff, and that’s not a criticism of them because many of them have hearts of gold. They’ve cared for an aunt. They’ve cared for a grandmother. They love the elderly. They want to do a good job.
But they don’t get the training that they need; they don’t get the supervision that they need; and so they’re either overworked all the time or they’re scared all the time that they’re going to kill someone.
I live in California. I’m a high school graduate. If I wanted to run an assisted living facility, I would take a 40-hour class, one-week class. …
No, that’s absolutely insane. If you want to be a manicurist in Texas, you have to have 300 hours of training — that’s not if you’re going to add pedicure or facials — and yet in 40 hours you can become assisted living administrator. I ask you, does that make sense?
In a consumer advocacy world and the ombudsman world, we talk about the fact that you have more training as a dog groomer than you do as a staff person in an assisted living or a nursing home. And when you have a high school graduate who can own and operate an assisted living, it’s insane. And people don’t realize it. Legislatures don’t realize it. When you talk to the people in Capitol Hill, they don’t realize it.
Families don’t realize it, because how often are you going to go in and ask the owner or the administrator, what’s your educational background? Could I see your diploma? No, it doesn’t happen. Not because we’re bad or stupid but because we’re uneducated about what to ask and what to expect.
… Talk about what happened to the growth of assisted living in the ’90s.
… Suddenly, you go from 10,000 or 15,000 facilities and maybe 200,000 people to almost 1 million people during the ’90s. During that one 10-year period, you had this tremendous growth in terms of the number of facilities. …
So it’s just exploded.
It’s just exploded. Even by 1998, when we did the first national study, we were up around between 900,000 and 1 million residents. That compares to the nursing homes, where it’s about 1.6 million and many more facilities. Where there are between 16,000 and 17,000 nursing homes, there are 34,000 to 40,000 to 50,000, depending on whether you include unlicensed homes, assisted living facilities. …
You’ve interviewed administrators, executive directors of assisted living facilities. What did they tell you about the pressure to fill beds?
… They felt tremendous pressure to fill beds. And you actually see a very high turnover among assisted living administrators because of that pressure to fill beds and to hold down cost by controlling staff. …
They turn over because they’ve come into the field of being an administrator because they’re attracted to care [for] the elderly. They’re attracted to health care. That’s what they want to do with their lives.
If they’re administrators working for someone else, their goal is not to make a 40 percent return on revenues for owners. … Their goal is to have a good facility. I talked to an administrator who wanted to bring his own parents there and wouldn’t.
What does that tell you?
It tells me that he knows it’s not good care, that he can’t provide good care. And that’s why they turn over, because at some point you just burn out. You burn out knowing every day that you’re not providing the care that people need, that you”re not even providing the safety that people need. Staff burn out and administrators burn out.
We interviewed a woman who’s what they call in California a med-tech, a medication technician. She was a high school dropout who was responsible for dispensing medications to 70 to 90 people at any given time. And she was the only person on staff on her shift who was responsible for all of those medications. What do you think when you encounter those kind of stories?
If family members don’t know they should, and if they’re not horrified they ought to be, and I’ll give you an example.
If you take the medication Lasix, or any diuretic, you have to have monitoring to know how much Lasix to give the person. It’s not just a steady dose every single day, every single week for the rest of your life. It depends on what your blood pressure is.
If you have untrained staff where you have somebody with a high school degree, did they know how to do the blood pressure properly? It’s the question.
“They don’t get the training that they need, they don’t get the supervision that they need, and so they’re either overworked all the time or they’re scared all the time that they’re going to kill someone.”
Or insulin. You’ve got to know the blood sugar level of the person to know how much insulin they should be getting.
And so we think: “Oh, it’s just easy. It’s just passing out medications that were already in the packet.” It’s not easy.
It also means that if you’re giving a lot of psychoactive medications, which we know are very high in assisted living, a lot of times to control the behaviors of people with dementia, you need to know what the side effects of those medications are.
Or you need to know when somebody’s taking two medications, they’re contraindicated, and they’re having an adverse reaction to that contraindication. That takes training and skill.
It’s not a criticism of the person with the 11th-grade education, but you can’t expect them to know that. You can’t expect them to understand the intricacies of the diseases people have when they’re taking nine medications. Once you take five or more medications, your likelihood of an interaction or of having a drug that’s not appropriate for the elderly, it’s huge. …
In your opinion, should somebody who is not a licensed, practical or vocational nurse or a registered nurse be passing out large amounts of medication to seniors?
I think it’s OK to pass them if the nurse is there supervising it. …
If they’re actually doing the supervision onsite, then I’m OK with it. Maybe I’m not always happy — nobody should be giving shots that’s not a licensed nurse — but I’m OK with that under supervision.
But the meaning of supervision in assisted living might mean that a nurse, an RN, comes in once a week or once a month, and they review the medication administration records. They’re not viewing what the med tech is doing. They’re not talking to the residents. They’re not doing any actual supervision. They’re just checking records. That’s wrong.
And what you hear from advocates of this is, well, the person was taking their medications by themselves at home, so why should it make a difference if it’s somebody with a high school or an 11th-grade education doing it?
Well, the reason you’ve put them in an assisted living is they weren’t taking their medications properly, and now you’re giving them over to someone who has even less knowledge and training.
We looked at 57 facilities owned by the Emeritus Corporation in California. We looked at inspections between 2007 and 2011, and we found 93 medication errors documented by the state. What do you think when I tell you that?
It’s hard to know what it means in terms of what’s the medication error? Is it a failure to write it down properly? Is it you gave it more than an hour of when it was delivered? You need to know something about the nature of the medication error and what the medication was and what impact it had on the resident.
However, if you’ve got 93 medication errors, one of those or more will have a negative impact on the resident. And what you see is residents end up in the emergency room, they end up in the hospital, or worst of all, they end up dead.
… What are the patterns that you see that you think are the most significant violations in the assisted living world?
Clearly the most significant and the most common are medication errors. And the second is probably inattention to falls among residents. …
And I think the failure to do criminal background checks, that not all states even require criminal background checks, because most abuse occurs because you’re understaffed and overstressed, and staff aren’t trained on how to deal with aggressive behaviors or resistance to care that you often get with people with dementia.
They think that behavior is on purpose. They’re trying to make my life difficult by not coming to take a bath. She hit me, so I should hit her. It’s a lack of understanding. So I think that whole area of training on dementia care and criminal background checks is probably the third important area.
But what you’re seeing is a systematic pattern of neglect. And we think neglect is not as bad as abuse, except that neglect occurs every single day of your life. And neglect shortens your life, and it impairs the quality of your life while you’re there, and people don’t know what to do.
There was a study of assisted living residents. … More than half didn’t even know there was an ombudsman program or who to complain to in terms of the licensing agency, the hotline, the ombudsman program, if they had a problem. So they’re vulnerable to those kinds of poor care. …
In the California inspection reports, we’ve seen case after case where somebody fell over and over and over again.
So the American Medical Directors Association, the CDC, researchers at a variety of universities have all done research and publications on how to prevent falls among the elderly. It’s not difficult, because we know what the risk factors are.
Assisted living facilities don’t have to do incident reports the way that nursing homes do. So in most states, you don’t even know what the rate of falls is.
But state licensing agencies ought to be identifying that as a problem. If you walk in a facility and you look at their incident reports and you see 100 falls in the last year for 70 patients, you ought to be going insane and figuring out what’s going on. Why are they falling? What kind of assessment do they have at the falls? What kind of prevention do they have? …
So why would an assisted living facility be interested in taking somebody who needs a lot of help, who has a lot of health problems? That would seem to be a headache to me, to bring in somebody that needs all kinds of assistance.
It is a headache. Except if the person’s private pay — the facility has a basic rate that it charges for room and board and some kind of minimal assistance, usually medication administration and what they call personal care, which is ill-defined.
If they need more help with bathing or dressing or locomotion or toileting or transfers, if they’re in a wheelchair and they need someone to bring them the wheelchair and to wheel them down to the dining room, you can charge the family a higher rate.
And that’s one other thing that you hear from families. They never know what the monthly charge is going to be because there are all these add-ons. And either they are add-ons kind of like a Chinese menu — you’ve bought some from column A and some from column B and some from column C — or because they’re put into what’s called a different level of care. So you entered at level A and now you’re at level C, and our charge for level C is not $3,500 a month, it’s $5,000 a month. …
They can charge a higher rate. More money, more money, more money, more money. That sounds horrible, because in fact if you really do, as a policy, allow people to age in place, then you really do have people whose needs change. And the facility sees that. And if they actually use that money to increase their staffing level and the services the person gets, and if they do something to address say that fall risk, then that’s money well spent.
But if they just charge more and they don’t change the staffing and they don’t change the training that the staff get and they don’t bring in a physical therapist to evaluate the resident of why they’re falling and they do none of those things, then they’re just getting more money. …
One thing that we’re seeing are facilities where there might be a nurse of some sort on duty 40 hours a week, nine to five. But then that nurse is gone, and the staff who are there generally don’t have any medical training, and some of the people in these facilities seem to be very frail, very ill.
And if you look at when the most falls occur, it’s at night when somebody gets out of the bed to go to the bathroom. And you have what, one staff on duty, two staff on duty? I’ve seen places that have had three staff for 90 residents. How do you think they’re really going to monitor the residents for that? And there’s no supervision.
The other thing is, as we see in the recent case in California, that’s a lot of time when sexual abuse occurs either by another resident whose cognitively impaired or mentally ill and doesn’t really have the intent to harm somebody but does it, or by staff who haven’t had a criminal background check. … And if there’s a fire, God help you, you’re asking for death.
More than 10 years ago, I believe you used the term “ticking time bomb” to describe the assisted living industry. How do you see it today?
I know I’m known as the Cassandra of the industry, because there are people who are zealous about assisted living. And when assisted living works well, it’s fabulous. It is something we would all want. …
The reason I’m a Cassandra is I say, yeah, but there are no staff. You’re getting residents who are sicker, who have more needs for care, more needs for medication supervision, and we’re not adding staff, and we’re not requiring more staff training.
“If you want to be a manicurist in Texas, you have to have 300 hours of training … and yet in 40 hours you can become [an] assisted living administrator. I ask you, does that make sense?”
We don’t have, for most of them, a residents’ bill of rights. And the ombudsman program has already got responsibilities a mile wide and resources that are an inch deep. So there’s nobody there to help them.
We’re creating an industry with 1 million people in it who are becoming more frail, who are poorly regulated by the states, which already are stressed. They have fewer inspectors. They have fewer complaint investigators by a lot than we do in nursing homes. And we don’t have consumer advocates for assisted living in most states.
That’s why I talk about it as a ticking time bomb, because we’re going to see more deaths, more injuries. I don’t delight in saying this, and I don’t even delight in thinking it. But we’ve created a situation where it’s almost impossible for this not to occur. And families are going to be so shocked, because they think they’ve made a good decision. They think they’ve made a safe decision, and they don’t understand. …
Do you think the regulators don’t even know what they’re doing in some cases?
The head of the state licensing agency told me, “Assisted living is the rock we don’t want to look under.” They know there’s a problem, but they don’t have the resources.
We live now in a place where tax is a dirty word. How do we think we’re going to pay for regulators if we don’t have taxes? But instead the states have had, since 2002 really, the worse fiscal crisis since the Great Depression. And we didn’t do much of the stimulus for the states.
When it’s nursing homes, we have federal support for a huge amount of the surveys and inspections and complaint investigations that they do and for the training that the surveyors get. None of that exists for inspection and regulation of assisted living, none of it. …
I have a question for you that comes from people in the industry, and we hear this a lot. They’ll say there’s a tension between providing autonomy to seniors in assisted living and protecting them, and that’s something that the industry grapples with. What do you think of that?
I think they’re right. … In our individual lives we struggle with that when we’re caring for our parents. There is no reason to think we won’t struggle with it in assisted living, except that assisted living is getting paid to make your loved one safe. …
I know that it’s a struggle between autonomy and protection. I just think if you’re getting paid to take care of people, to keep them safe, you kind of err on the side of protection. And you think carefully and reasonably about what autonomy means. …
Autonomy means your ability to make reasonable decisions about the quality of your daily life and how you organize it. Autonomy might even mean I put on a dress or a blouse that doesn’t match my skirt. And my daughter doesn’t like when I’m not well dressed, but by God if I want to wear my pearls and a flowered shirt and a plaid skirt, I should be able to, because it’s not a risk to my health or safety.
But for the things that are risks to your health and safety, then autonomy is kind of a false issue I think.
And that brings me to elopement and residents with dementia or Alzheimer’s leaving facilities, going AWOL without anyone knowing. When we looked at Emeritus facilities in California, we found 14 times that the state cited them for failing to prevent people from eloping. … What’s the concern for you when a resident with Alzheimer’s or dementia cruises out into the world on their own?
Eloping sounds so romantic. Oh, you’re eloping, like you’re going and something wonderful is going to happen at the end of it. What it means is you’re wandering out of the facility into an unsafe environment. …
What happens in assisted living is people are asked to sign these things called negotiated risk contracts. And often they say if your family member elopes, we don’t have the staff to go out and search for them, and we are not going to have a locked facility.
… By locked I mean you have to punch a key code to get out. Or if somebody’s wearing a bracelet that indicates that they have dementia and can’t make safe decisions, it sets off an alarm.
Lots of assisted living facilities think that having alarms go off or having that difficulty of punching in a key code is not consistent with their view of themselves as a hospitality industry. We’ve got a nice-looking facility. You shouldn’t feel like you’re in a nursing home. You should walk in and it should not look like a nursing home.
But it means that residents can wander out of the facility. If you’re lucky, they wander into a safe courtyard if you’ve designed the facility correctly, and somebody will eventually notice that they’re out there hopefully before they freeze to death or they get heat stroke.
But if you don’t have that, they can wonder out onto the road. They can get lost. They can fall in a ditch, and this is what you read about when elopement goes wrong. When it’s not just a happy jaunt down to the corner store, it’s you’ve been hit by a truck on the interstate.
So elopement is a serious issue. And if we keep denying the percentage of people in assisted living who have at least moderate cognitive impairment, we’re not going to put in place the safety measures that ought to be there. And to say that that’s robbing you of autonomy, no, it’s robbing you of the ability to kill yourself. Sorry.
… Why are these facilities offering memory care units or dementia care units?
A) There’s demand and you’re trying to keep occupancy up, and B) you can charge more for memory care. … All you’ve really done is created rooms around a courtyard. But still, that’s nice and it’s much safer, and they can’t wander out as easily.
But then they say they’ve got staff who are trained to do memory care, and that’s where it starts to kind of fall apart, because the staff are generally not well-trained to do dementia care.
Practically no one, nursing home or assisted living, is well-trained to do dementia care if there are any behaviors involved, because they don’t understand the neurological impact on people’s behavior of having a dementing illness. But you can charge more for it. …
From your research, what is your impression of the quality of dementia care that is being delivered to people in assisted living settings?
… There are lots of things that you can do in memory care, and I’ve seen some facilities that are doing a wonderful job of that. I suspect that most facilities aren’t, but we really haven’t seen a lot of research on memory care units in assisted living. …
I think one of the things that happens is that’s a good marketing tool for families. You’re going to have a memory care unit. And it usually looks nice and it sounds nice, a memory care unit. That sounds better than a special care unit. It’s like you’re going to take care of their memory.
It’s a good marketing tool whether or not anything happens that helps them maintain cognitive function or slow the decline of cognitive function or slow the decline of physical function or make sure that they are getting medications correctly.
They should never be getting psychotropic medications for behavior management. When you’re a consumer, you’ve got to ask those kinds of more sophisticated questions. And when you’re a regulator, you want to be demanding that in the legislation, and often they don’t.
We met with the head of memory care services for the Emeritus Corporation and talked to her about their plan, their program for dealing with people with Alzheimer’s and dementia. And that program was designed without the input of a medical doctor. What do you think of that?
It’s ridiculous. Because who’s going to explain, this is what the disease is, this is the impact that it has on people’s physical health and on their behaviors, and this is how you need to interpret it? … Eight hours? That’s nothing. Without a medical doctor, you’re not going to understand the medications, you’re not going to understand the neurological basis of what’s going on.
For example, if you have delirium, it mimics some of the same conditions that people have with dementia. But if you’ve got delirium, you’re really sick. You need a medical doctor right away, and there are ways to distinguish between it.
But one of the first things is you’ve got to have staff who recognize, “Oh, there has been a sudden change in the cognition of this resident, and I’m going to go and report it to my supervisor, and my supervisor is going to call the resident’s family and the resident’s physician.” If you don’t, that person could die.
I mean it’s eight hours. There’s a lot to tell people about, and when people have memory problems, they can’t tell you they’re in pain. But do you stop having headaches? Do you stop having pain from arthritis? If you’ve got cancer, do you stop having pain? No. And the way they exhibit it is through behaviors. …
You’ve got to know how to interpret nonverbal cues that something’s going on with this resident because they can’t tell you verbally, in the same way that a two-year-old can’t tell you or a one-year-old.
“That’s why I talk about it as a ticking time bomb, because we’re going to see more deaths, more injuries. I don’t delight in saying this, and I don’t even delight in thinking it. But we’ve created a situation where it’s almost impossible for this not to occur.”
I don’t mean that in a disrespectful way to say about an adult. But they’re going to give you nonverbal cues to what’s going on, and you need training to recognize those nonverbal cues.
I mean just something as simple as there used to be screamers. [There was] a study of people who screamed. That’s real common in memory care units. And one of the residents who screamed didn’t have good trunk control, and when they would slump in their chair like this, it would really hurt their spine, like this hurts my spine. Well, that person couldn’t say “I’m really uncomfortable,” so they would scream.
Another one, if they got a like something under their dentures, like a piece of corn or a piece of bacon or something, they couldn’t say, I’ve got something so uncomfortable there. They would scream. What we tend to do is ignore the screamers, because they make us nuts. We don’t want to hear them screaming, so you give him a drug to shut them up.
You’ve got to do a lot of training for memory care units. These people have got to be not only loving and caring, they’ve got to be educated. You can do great care. You just got to know how.
Talk about the quality of state regulation in assisted living in general. …
In terms of regulation at the state level, with the exception of one person that I interviewed, almost everybody I’ve talked to who heads up the agency, or who is in any position of authority in the agency, including heading up the surveyors, want to do a better job, know that there are problems out there. …
It isn’t that people are there with ill intent or even with a sloppy attitude that it doesn’t matter. They don’t have the resources. And when you go to Congress and you say the federal government ought to be supporting what the state regulators are doing, they wave their hands. Monkey hands we call it: See no evil, hear no evil, speak no evil. Oh, we don’t have any money in assisted living.
We’ve got people in assisted living. We’ve got people who have Social Security, with SSI [Supplemental Security Income], who use hospitals more frequently than the residents of nursing homes. We’ve got people who are using plenty of federal money through the Medicare program and through Social Security. It’s just a bogus excuse for not giving state regulators the resources they need to do a better job. …
There is nobody who’ll tell you that inspecting once every two and a half years or once every five years or getting out to a complaint investigation six months after it came in is right. Nobody will tell you that’s right, but that’s where they’re stuck. …
And the tools they have are completely inadequate for the industry that exists. Most of them have standards that are out of date. There are a few states, like Washington State, New Jersey and Oregon, that have changed their standards to match who they think is there. Or Maine, which has provided consultation based on the deficiencies and violations they see. But Maine stopped doing that when the budget got tight, so they don’t have standards that are adequate.
They don’t have consulting nurses who can go into facilities and help to educate them about how they do things in a better way. And when it comes to surveys, they are late. Whether they are complaint investigations or annual surveys, they’re late.
They’re not big enough to detect problems in terms of having a pharmacist there to look at medications, a nurse to look at things, a dietician to look at the adequacy of meals. The survey teams are too small. Usually the inspections are either announced or known of in advance. So what would you do? Oh, I’m going to come and inspect you in two weeks. Suddenly things look better.
The compliance mechanisms. Mostly it’s either “I’m going to close the facility” — I call that the atom bomb, which no one ever uses — or the prayerful hands: “Please will you do a better job? Let’s see you write up a plan of correction for those 80 falls. Let’s see you write up a plan of correction.” And the plan of correction is, “I’ll call 911 sooner.” A) That’s not a good plan, and B) it doesn’t solve the problem.
So some states have put fines in effect. Well if it’s a $150 fine for a death … for the same things that you see a $150 fine in California, you’ll get a $14,000 fine in North Carolina, but it’s not imposed very often. None of this is imposed very often.
… We went to Georgia and we met with the family of a man who drank toxic dishwashing detergent. He was in a dementia unit. And the state of Georgia, for his death and for the medication error that went to one another person that was non-fatal, charged the facility $601.
We went to Mississippi and we interviewed the family of a woman who had dementia and jumped out the second floor window of the locked dementia care unit there and died. And the facility was not fined. They were just told, hey, you should move your dementia unit to the first floor.
We have looked at numerous cases in California where people died and the states said, this person died in part because of bad care, and we’re going to fine you $150. What kind of message does that send to the operators?
For the good operators, they’re going to be good no matter what. You can improve the job that they will do. As we saw in nursing homes, physical restraints went from 48 percent, something like that, to less than 6 percent. So even good facilities can get better. But mostly the good facilities are trying to do a good job. A lot of those are nonprofits. …
But for the bad operators, or for the operators who are not necessarily bad but want to make money, that’s just a cost of doing business. What’s the cost of adding staff or making all of the kitchen secure and all of the cleaning supplies secure? What’s the cost of that compared to $600 fine? Cheaper to do the fine. …
There are groups of facilities in the middle, and I think those fines probably don’t work for them either, but they may respond better to education and consultation, which they’re also not getting. Or to more frequent monitoring combined with consultation. Or going back to see if they’ve developed a plan of correction that’s meaningful and implemented it.
So there are things you can do short of fines. But if you’re going to have a fine, catch somebody’s attention.
I’ll give you a number for Emeritus. We tallied up more than 570 violations [in California]. And by our tally, the financial penalties for those 570 violations– it’s 570 plus — was in about the $13,500 range. Could have [been] a little bit more, could have been a little bit less, depending on negotiations. But that’s the ballpark.
You can’t even hire an additional personal care attendant for $13,000, much less a part of an RN. … So it’s cheaper to just continue as you were. …
If you have a for-profit industry, they make an economic calculus. So it’s ludicrous. Why do we even bother? Because we act as if we’ve done something, and we’ve done nothing. It’s an insult, a $150 fine for causing someone’s death through neglect or abuse. We charge more for that for horses that aren’t fed well in Texas. …
… In Texas the law at least normally is if a senior is in a situation where they may be in immediate jeopardy, an investigator needs to get out to the facility in 48 hours.
And they honestly make a good faith effort to get out there, although they’ve cut the number of surveyors, so it’s pretty damn hard.
If we’re in California, you got to get there in 10 days. Now let’s compare that to a situation where you have a child who is allegedly being abused and is in immediate jeopardy. How quickly do you think it would take child protective services or local law enforcement to go into a house if a child is allegedly being abused?
… It would be immediate, and the police have protocols for investigating child abuse complaints. Hospital emergency rooms have protocols for identifying likely child abuse when a child is brought in. They do not have those for elder abuse.
They are starting to get them and the police are willing, but they don’t understand how to interview someone with dementia, or you can’t take their word that it happened. So they don’t know who to interview. How do we figure out if it happened? It’s not that we do such a sterling job with child abuse, but we do about a hundred times worse with elder abuse. …
SUPPORT PROVIDED BY
FRONTLINE Watch FRONTLINE About FRONTLINE Contact FRONTLINE
FRONTLINE is a registered trademark of WGBH Educational Foundation.
Web Site Copyright ©1995-2014 WGBH Educational Foundation
PBS is a 501(c)(3) not-for-profit organization.