NIJ Conference Panel
Carrie Mulford: I am pleased to be here today to talk about forensic aspects of elder abuse on the — I don't know what the word is when you — it's the day after, not the eve but the opposite of that — of World Elder Abuse Awareness Day. And NIJ has been funding forensic research in elder abuse for about six years or so, and it's one of our primary focal areas in our elder abuse portfolio. And, as being a research person, we are trained to never make definitive statements, but I am pretty sure I can definitively say that NIJ is the only federal funder of forensic research in elder abuse.
There are other funders of elder abuse research but not in the forensics area. So this is a topic that's near and dear to our hearts.
The issues that we're going to be talking about today are issues that were raised directly, questions that were raised directly from the field, including if someone has an advanced stage pressure ulcer, is that evidence that that person was neglected, and then the other question being can victims with mild and moderate dementia be reliable witnesses to their own abuse.
So I am going to introduce our speakers sort of together because, if you actually read their bios, they're very similar. So both of them hail from the School of Medicine at the University of California, Irvine. Both are members of the Center of Excellence in Elder Abuse and Neglect in Orange County, California.
Dr. Liao, Solomon Liao, is a geriatrician, and Dr. Wiglesworth, Aileen Wiglesworth, is a gerontologist, so there you have the major differences, but they're both very actively involved in elder abuse research, very familiar to me and to us at NIJ, and we are very pleased to have them both here.
And Susan Chasson is the sexual assault nurse examiner coordinator for the Utah Coalition Against Sexual Assault and is a part-time faculty member in the College of Nursing at BYU. She's also the president of the International Association of Forensic Nurses and has been working for more than 15 years in helping hospitals and communities to create programs to provide health care to victims of violence in Utah. What she will be doing today is talking about some of the practical implications of the work that NIJ has funded and that you will hear about today.
Aileen Wiglesworth: Alright. I am Aileen Wiglesworth from the Center of Excellence in Elder Abuse and Neglect, and I forgot to put the website up.
Do you have it on yours, Solomon?
Just search on Center of Excellence on Elder Abuse and Neglect and you can find it, and I'm here to talk about people with dementia as witnesses.
So the problem is that people with dementia are vulnerable to crimes, very vulnerable. Maybe there's five times the rates of elder abuse in people with dementia that there is in the normal population; that's what our research shows. And they're often the only witnesses, which we heard in the last session, if you were there, which is the case in elder abuse regardless, but people don't believe them. Their family often don't believe them, but certainly police and prosecutors have problems thinking about them being involved in the criminal justice system.
So there's evidence that people with dementia may remember significant emotional experiences comes both from the neuroscience literature and just from anecdotal evidence, if you talk to practitioners. Even like, people in nursing homes will say they react when the perp enters the room. We're looking at people that are still able to actually talk about these things, but emotional memory is mediated differently than some of the other things about memory that happen with dementia. So we wanted research specific to this criminal justice issue.
So I'm going to talk about human subjects research, the way people do, and talk about our research questions and hypotheses, our design and methods. We have a novel outcome measure, so I want to try to convince you that it's valid, and then we also had a comparison or control group, so I wanted to show you how these people look in respect, as opposed to people that do not have cognitive impairment, and then finally, the results in terms of the hypotheses and the usual conclusions, limitations and recommendations. And I'll try not to go too fast, but I know I have got more than 25 minutes' worth here.
So the research question is, is there a subset of people with dementia who have reliable memory for emotional life events? So that was our first question, are they out there? And, secondly, if they are, how do they differ, how do you tell within the population of people with dementia that this is someone that you can rely on, their memory for emotional events? And emotional memory, as defined in the literature, is emotionally influenced memory. It's also called “emotionally influenced memory.” It's conscious memory of emotionally arousing events.
So here are our hypotheses about how we will characterize these people; Who will be the people that have a good memory for life events?
Well, first of all, they should be able to provide more details than people who have poor memory. They should be able to recount the memory again after a delay. If you think about people who forget everything, so if they tell a story about something they remember, can they repeat that story?
I don't know if you know what confabulation is. Confabulation is a phenomenon in the elderly population and even especially in the people with dementia, where it's not exactly lying, it's telling stories or it's saying — it's because you don't have the answer, you come up with a different answer, but it's not necessarily the truth. We don't call it lying because there doesn't seem to be an awareness that that's what they're doing. I know my father is a fabulous confabulator, he's a 96 year old with dementia, and he tells great stories. So we had to look for confabulation. And we thought that these people would be at an earlier stage of dementia, so we measure that.
Psychotic systems often go along with dementia, things like hallucinations, delusions, illusions, disinhibition, so we looked for those things to see if they would be related to who has better emotional memory, and then there is something called awareness. People with dementia may or may not be aware that they have dementia. So we attempted to measure that and see that the people were more aware of what's going with them cognitively or does that also make them more reliable. So all of those are compared to people who don't have good emotional memories.
Our research design is — first of all, part of our study design was to start out by talking to experts. I mean, we're just researchers. I'm a gerontologist. So, I mean, we do have an elder abuse forensic center. I have seen the criminal justice side of things, but I thought I better talk to people first to get something useful. It's kind of the way we like to do research, and so I talk to experts in child abuse, domestic violence, et cetera, and the key seemed to be what was our interviewing technique. And so they said first, you try to get them to talk just about it without cuing them at all. So this called “recall” in the memory literature. An example of a question that elicits recall is, “What happened?” It's an open ended question.
Then, recognition is the next level down, and this is easier, we already know, for older adults. It's the yes/no question and opposed to “tell me about it.” So an example of a recognition by a category would be did someone hurt you, and then there is another level of recognition where you talk about the specific event. “Did your grandson knock you down?” that would be recognition by event. Now, even when we ask questions like that, we ask them to give more detail, so that we could verify that they really were remembering it.
So it's a cross sectional case comparison group design, convenient samples. We use dyads, which we often do in our dementia research, so there's a pair. There's an older adult with or without dementia, depending on whether they're case or comparison, and an informant, usually a caregiver or close family member.
We did this mainly in private residences, if you were in senior centers. So we did structured interviews. We also had a number of questionnaires to evaluate some of the other variables, and we recorded everything because we needed to do actual rating of some of our variables.
Inclusion criteria for the older adult members, well, cases had a dementia diagnosis. We screened for early to moderate dementia. We did pretty well. We ended up with a couple of people with severe dementia, and we took them out of the analysis. And, of course, they must have someone, an informant, willing to participate.
The comparison group, no cognitive impairment. We attempted to do age and gender comparison, and they also must have an informant. The informants could have no cognitive impairment, and they needed to know the older adult participant well.
So, in the study procedures, first thing is separate the two. We had two research assistants that went in separate rooms, one with the older adult, one with the informant. With the older adult, we elicited emotional life event memories, and with the informant, we took those memories across to the informant and said can you verify these and asked them to talk about it at some length, the same memories. We also asked the informant to give us some life events and, you know, took those over into the other room where there older adult was, and if they hadn't already mentioned that event, we got some verification from the older adult that that event had occurred.
And then we collected the other data, the characteristics of the participants and of the life events. And then we had the recordings to actually assess whether the memories did match, and we had a rating scale for that, and the characteristics of memories, like the number of details. We also looked at things like valence of memory, positive or negative.
So, in the structured interview, just a little more detail on that. We started with four open ended questions. So they were, can you think of anything that happened in the last month that made you happy or that you especially enjoyed? And if that elicited a memory, fine. Then we went on, what about in the last six months; then in the last month, can you think of anything that made you sad or angry or that was particularly unpleasant? Also in the last six months, so those were open ended questions.
Cued recognition for types of events, we used a geriatric adverse life events list. This is a standard instrument for looking for stress. You know, maybe you have seen a stress list, the kinds of things that happen to older adults that are, you know, adverse events, deaths, financial difficulties, movements to nursing homes or other kinds of moves. There were 26 of them on this list. It's in the literature.
We added some positive events like birth of a grandchild, family gatherings, and we used these to cue, you know, if something like this happened or something like this happened or something like this happened. So we used this both with the informant to say did something like this happen to the older adult. We used it with the older adult to try to get them to remember things that have happened. And then, finally, as I said, if we got a memory from the informant that the older adult hadn't already mentioned, we would check and see if that happened or if they could verify it.
So we had to develop a whole rating scale, and it's really quite detailed, but, on a high level, a 1 is a good corroboration for the event. So we listened to what the informant said, we listened to what the older adult said, and said, yep, they're talking about the same thing.
The next rating would be there would be some corroboration for event. Often these were things that happened multiple times. Visits from grandchildren were big, and maybe they were remembering different visits or they were remembering a longer ago visit, but they remembered the visit from the grandchildren. So there was some corroboration. They did remember visits from grandchildren, whether they're remembering the same specific event.
Interestingly, this is very similar to other literature, even child witness literature, that if there's multiple events, you have worse memory for it.
And then there were — if they couldn't corroborate it, you know, we weren't willing to say it didn't happen. Maybe they just didn't know about it. Maybe, you know, we would decide, or if they appeared to be confabulating, they'd say, “Oh, yeah, it happened,” but they couldn't tell you any more about it, and then, finally, if they said, “No, I don't remember that.”
So this goes from, you know — better memory is this way, so it goes from four down to one, if you remember the scale. So it's opposite direction. So you see we got a lot of variability in the memory, so this was good. It's good for doing statistics. And the comparison group's way over here, very close to one, and you can see that the average memory reliability — what we did was rate each memory that they talked about and then took the average across the memories, so these are averages of all memories of each individual, and we had 93 people. So that's our outcome measure, and now I'm going to talk some more about that because we had to validate it, so remember we've got this — and this is looking at it a little different way, obviously, significantly different between the comparison group and the people with dementia.
Oh, sorry. I should go back and say — oh, I'm missing something.
Anyway, the way we validated it is we looked at it two ways. There are measures of episodic memory, and what they do is you tell a story and show pictures, and then later, with a delay or not, you ask about the story and the pictures. So that's sort of simulating a life event or episodic memory. That's what the laboratory instruments do.
The other thing is we knew of a test of emotional memory specifically, and I'll tell you more about this, but this is the data on episodic memory. We had two because both to test confabulation and to test emotional memory in the three phase test, they were both episodic memory tests. They are both highly correlated with our novel measure of emotional memory, so that made us think we were actually doing something real, and just to look at emotional memory, Larry Cahill, is also at UCI, he's an eminent neuroscientist, and he developed this three phase story to test emotional memory.
So the way this works is there's phase one of the story that has four pictures. I'll tell you the story briefly. A little boy and his mother are going to see his father at work. They're about to cross the street. I forget what else pictures of that happening.
Phase two, the story takes a dramatic turn, and one picture is very emotional. The little boy gets hit by a car, gets rushed to the hospital, and they show this grisly picture of his legs were severed and sewed back on, so, very memorable.
And then phase three is sort of wind down. The little boy is OK. His mother calls work and says she will be late, so...
Wiglesworth: So, anyway, the way you measure emotional memory with this is in phase one, you have a kind of baseline of how good their recall and their recognition, if you remember, you know, me talking about those are, you measure both. And then in phase two, you think those might improve because that's more salient information, and in phase three, it comes down, and the measure is this delta. So, if you've got a significant difference within group, within person, their memory improves in recognition and recall, then emotional memory is present, and, in fact, usually — oh, when Cahill does this, he waits a week, right, because he's got, you know, college students doing it, right. We've got elders; we waited five minutes.
Neither group performed better on recognition memory, and that's probably if we'd waited longer, we would have had something there, but both groups performed better on recall, and, in fact, they were quite comparable. So both groups appeared to have emotional memory, and these are all within subjects, so these are four different tests to see if there was a significant change. And you can see that they're starting, they're getting toward a significant change with the comparison group, so maybe their emotional memory is a little better, nothing at all in terms of the people with dementia and recognition, but they're quite similar on recall.
Now, the baseline is, you know, that the people in the comparison group remembered a lot more, but the change is similar. So we felt pretty good about our measure.
We went on, and next on our agenda, we looked at the changes between the comparison, or we compared with the comparison group. So, first, just statistically controlled variables. They were very similar, you know, in all the things we felt we had to control, but we did not manage to get them controlled on age. It's really tough when you're looking for a hundred people with dementia whose caregivers are not — I found defensive — but are not too overwhelmed to participate in your study.
You know, if you are looking at people in their 90s, chances are they're going to be demented; if you are looking at people in their 60s, chances are they're not going to be demented. So it's almost artificial to try to match this, and then to do it, you end up turning down people in their 90s, which somehow doesn't seem right, but we got pretty close, and so what we decided to do was adjust for these variables, which we will do.
So they matched on things we wanted them to match, and they didn't match on things we didn't expect them to match, which are like a mental status exam. We used the Montreal Cognitive Assessment because it has a language scale and attention scale. These are both things that are very important to memory, so we thought we should keep tabs on those, and then functional abilities is activities of daily living or instrumental activities of daily living, you know, can they toilet themselves, can they feed themselves, but mostly it was instrumental at this level, can they manage their financial affairs. Obviously, these people were more impaired; we expected them to be.
So a comparison of the dyadic relationships, we thought it was really important to see that we had the same kind of relationships, and in terms of — most were spouses. The groups were very comparable. Most were co resident and absolutely comparable; length of time, no, mostly over 10 years, comparable; and frequency, seen daily. So we felt like we matched the dyadic groups.
So now matching on some of those variables we are interested in for our hypotheses or comparing, and they were different. So people in the comparison group remembered more details, but people with dementia remembered a lot of details, too. People in the comparison group, you know, without a flaw, were able to remember after delay, all of them. People with dementia, a lot of them did, but it was significantly different.
Then we looked at some other interview variables that we hadn't even hypothesized because we realized we had them. So, like the ability to recall or the proportion of memories, all of their memories from recall, kind of interesting. The comparison group, 50 percent of their memories came from just asking those open-ended questions; whereas, in the people with dementia, over 50 percent came from the other room, the informant telling them this happened and they're going, “Oh, yeah, that happened,” you know, and then talking about it. But they didn't differ at all on memories cued by topic, just on recall.
And this one I really like, which is no difference in the proportion of positive memories. Now, elders remember positive things more than younger people, which is nicely adaptive, and people with dementia remember even fewer negative things, which is, there is a difference between the groups in that the comparison group remembers a higher proportion of negative events but kind of an interesting variable, as you will see.
Confabulation. Now, how you look at confabulation is a couple of ways. So this is this episodic memory test. You tell a story, and then you ask questions. If you don't know the answers and you are confabulating, you are more likely to say yes, right? These are yes/no questions. Well, yeah, they were more likely to say yes. “IDK” is “I don't know” when the answer should have been no or yes.
But look at the comparison group. I think they're doing a little confabulating, too, but significantly more, as we expected. And then the other way you do it is you have questions to which you don't know the answer. “Was the teacher's name Ann?” Nobody told you the teacher's name. If you said yes, you were confabulating, and they were significantly different at the .05 level, which is still quite significant because this is based on four questions. So we felt like we did find a difference in confabulation.
Now, let me go on to just looking at the people with dementia. So the rest of this, forget the comparison group. We're just looking at all these people with dementia. We've got our outcome variable, and we're looking for what's associated with it. Well, age is significantly associated with it. So we'll still control for that. We'll still control for education, even though it isn't, and then the interview variables, most of them are. All except for positive memory are the ones we looked at, so number of details, memories repeated after delay, proportion of negative memories. Those with better memory were more likely to report negative memories, and proportion of memories from recall and even proportion of memories from cued recognition, from that long list, though that's not as significant.
Now, there's a lot of co-linearity between these, if you know your statistical language. Then looking at the non interview variables, the other variables, yeah, dementia severity is certainly associated with it, not confabulation, not either of the confabulation. Awareness was associated, but, sorry, our measure didn't work very well. We had some inter rater effects. So I'm not going to put that in my final model because of that. No association of the neuropsychiatric behaviors. We found neuropsychiatric behaviors, but you could be hallucinating and still have valid memory or not. So that didn't predict.
So we decided also to look at this episodic memory because that associated so strongly. We had not put that in our hypotheses, but we thought we might want to put it in our model, and we had really three measures. We had a measure that was just recognition responses that had a little more variability. So we used that and some of other measures, you know, looked at co-linearity, and we came up with four models that we thought were pretty good.
I like the two on the left because you can figure them out just by talking to people. So recall and percent of negative kind of cancel each other out, so I put them, you could use either one.
Both negative memories and recall are good predictors, but you wouldn't put them both in the same model because they are collinear.
Number of details and delay are also very collinear. So I used mean number of details in the model, and it's a very strong predictor. And then if you put in episodic memory tests, they are also strong predictors. So you come up with four different ways to say, you know, I've got a pretty good idea who's got good emotional memory or not. You know, this is explaining 73 to 77 percent of the variability.
OK. So, conclusions, a significant subset of people with dementia were able to report on emotionally influenced life event memories. Confabulation and neuropsychiatric behaviors did not indicate whether or not a person with dementia could reliably report on emotional memories, and the findings, to me anyway, indicate that maybe investigators, APS, law enforcement should consider this kind of structured interviewing of people with dementia who are witnesses to crimes.
Limitations of the study. This is a study of kind of benign events. There were some traumatic events. You know, elder abuse is traumatic, and the neuroscience literature says that may be different, if anything more salient, but other things can happen. So that study probably should be done, really hard to do.
OK. We rated from just listening to the tapes. We haven't transcribed these. I'm going to try to get them transcribed when I get some students working for me.
The number of details are, you know, it's just, we did zero, one to two or three or more, we don't have fine detail there. And, also, our raters were aware that the participants were people with dementia or comparison group, so those are limitations.
Future directions. I am wondering what even these people with poor memory are remembering, and I can look at my data maybe to look at that a little more. This is just the beginning. There's lots of literature on child witnesses, even somewhat older adult witnesses, and this is the first we know of just on people with dementia. So there's a lot more that we could look at.
And, like I said, we need research on people with dementia in abuse or trauma. We did a study that I presented last year on bruising. We approached 400 APS physical abuse victims, and 80 of them participated. Five of those were demented, and, by the way, they all remembered how they got their bruises. But that's 400 people to get 5. I think it's going to be hard to do that research. I'd like some creative ideas of how to do it because I would love to do it.
This is our team. I work with Laura Mosqueda and some other folks, and we did have some very good consulting people. Elizabeth Loftus does all the work with eyewitness, Larry Cahill, and Dara Sorkin helped us with the methodology.
Solomon Liao: Alright. Well, my little study is a multi site study to look at pressure ulcers in long term care facilities that are best practice facilities, and why is pressure ulcers important? Well, obviously, for us, the issue is that it can be a marker of elder neglect, especially when you get to the extreme form, but like Aileen was mentioning, it's hard to study that.
So we really went to the other end of the spectrum to say, well, what does really bad ulcers under the best of care look like, and this really came out of a parallel to our bruising study, and for those in the audience who may be familiar with our bruising study, our very first bruising study looked at just normal bruises in older people. And so we thought, well, if we could perhaps understand better what these ulcers that occur under best care settings look like, then maybe that will at least help to set what the normal range is, so that we can tell, then, what is abnormal or pathological.
The other reason, of course, is that this is actually the number one reason why long term care facilities get into legal problems. As you all know, the vast majority of it is civil suits, not criminal issues. So there are millions and millions of dollars spent across the country prosecuting and defending these cases, mostly defending these cases.
And believe it or not, despite all the research that we have on pressure ulcers, there is really actually no consensus about whether full thickness pressure ulcers, the Stage 3's and Stage 4's, are actually preventable or are they an indication of poor care or even neglect.
So, for example, there was an interesting survey done of, quote, “experts” in wounds at a conference, and about 60 percent or so of them actually thought that any Stage 4 ulcer is an indication of neglect, and still there were a good chunk of them that believe that even a Stage 3 ulcer was an indication of neglect, just the mere presence.
And so there's really not good consensus even amongst the experts as to, well, are pressure ulcers really an indicator, a good indicator of the quality of care that long term care facilities provide, and one of the reasons for that is because pressure ulcers really are a marker of a whole host of things that come interact together to produce that pressure ulcer.
Some of those factors have to do with care and the kind of care that's being provided, but some of those factors also have to do with the individual themselves or, in this case, the resident of the long term care facility. And there's even debate as to whether or not these pressure ulcers really occur from the outside in, in other words top of the skin down, or from the inside out. And this is relevant because — I still remember one of the murder cases that I testified in of a licensed vocational nurse who was charged with neglecting a gentleman with Huntington's chorea in a nearby county in my state. Her defense lawyer's defense was that, well, these things just suddenly popped out, these pressure ulcers, and that was her claim that these Stage 4 ulcers, “Well, they weren't there the day before, and all of a sudden, you know, they just came out, and so I rushed him into the emergency room.” So those are the kind of debates that are occurring even amongst the wound experts.
So our research question then was, well, first of all, do these full thickness pressure ulcers develop even under the best of care in long term care facilities. So, in other words, if they occur in the best of facilities, then, well, you can't really blame the not so good facilities if they occur there.
And then are there forensic characteristics; in other words, can you just look at an ulcer and say, “Aha, that one is due to good care, or that one is due to bad care, and these are the reasons why.” without having to do the big investigation of the entire facility and go through, you know, mountains and mountains of medical records.
By the way, you know, I often ask — as geriatricians by prosecutors, they'll shove a picture in our face and say, “Is this abuse or neglect?” I don't know.
So the other question we had was can these full thickness ulcers, again, occur all of a sudden, you know, without seeing a prior Stage 1 or Stage 2 pressure ulcer, and then what are the characteristics of these individuals who do develop these pressure ulcers.
Now, the top question was our main research question, and the other ones were ones that we were just hoping to catch on the fly or, you know, on the side. So our hypothesis is that long term care residents can develop these full thickness pressure ulcers despite getting very good care, and that these ulcers will be noticed by staff before they become full thickness ulcers, and that hopefully, these ulcers will share some common characteristics that we can use for forensics.
So we identified these facilities in multiple areas. In our area of Orange County, of course, and also southern Los Angeles County, we also had colleagues up in Seattle — and I'll show you their names at the end — and then we also had colleagues at the University of Wisconsin who had relationships with national corporations, and so we went to these national chain nursing home corporations and say, “Could you nominate your best facilities for us to approach to be part of the study?”
Now, we defined “best care facilities” as the top 33rd percent of the Medicare database, and these are facilities who have not been cited for pressure ulcer deficiencies in the prior 12 months.
We also looked at the California database, which was managed by the University of California at San Francisco, and these were facilities that were the top of the group; in other words, four out of four star ratings. So then we approached each of these facilities, and every month over a two year time frame checked in with them and say, “Do you have anybody who would qualify for the pressure ulcer?” And then if they did, our research nurse went out and surveyed the facility using, you know, standard federal surveyor criteria, and, basically, they looked over their policies and procedures, and they also made direct observation to make sure that their staff was following those policies and procedures.
We also held a two-day training course for our staff to, number one, make sure that they know what they're doing but also to make sure that there was good inter rater reliability of what they were doing, and, specifically, we used three instruments, standardized instruments.
One is the decision making capacity instrument, and this was actually mandated in the state of California for anybody that was doing research on dementia. In other words, as you all know, demented people can still give research consent, some of them. Some of them can't, so how do you sort of figure out who can and who cannot, and so this was standardized instrument that, again, we were required by law to use, and so we had to train the research nurses from the other states on how to use this instrument.
We also used a standard photographic wound assessment tool. So all the nurses were trained how to use a digital camera to take pictures of these wounds, and then the characteristics of the pressure ulcers were recorded using a standardized pressure ulcer status tool.
So the way we recruited residents, they obviously had to be geriatrics, and that was mandated by the grants, and, obviously, they had to reside in a long term care facility, and these could be the skilled nursing facilities or long term acute care facilities. They had to have a full thickness pressure ulcer currently, meaning a Stage 3 or Stage 4. And they also had to have originated in that facility; in other words, they couldn't come in from someplace else with a facility. And, obviously, we had to be able to obtain informed consent.
We tried, of course, to obtain consent first from the resident, if we could, and then if not, if under the tool they weren't capable, we went to a proxy.
We also collected some basic information about the facilities, including number of beds, type of facility, and as I mentioned, this was a two year study that went from August 2007 to August 2009.
We also collected information about the resident themselves, including basic demographics, the diagnoses, which I'll show you in a bit, and the medications they're on, the number of medications.
We also looked at how much risk they were at for developing pressure ulcers, and we used the most popular national instrument, which is the Braden instrument, which had a score.
And then our nurses went with the facility staff on their routine room rounds to evaluate the wounds and to take digital photos, and the reason we did that is, number one, we wanted to minimize the discomfort to the resident, and then, number two, we also want to minimize the impact on work flow for the facility to try to, again, encourage the facility to participate.
So, in addition to the characteristics of the wound, we also particularly paid attention to the initial stage these ulcers developed at, how many they had and where they were.
Now, I don't know if you all know, but there really is no gold standard for evaluating the quality of care that somebody gets, and so we used, based upon our elder mistreatment background, something called a “LEAD panel.” And, actually, Aileen's probably the country's biggest expert now in LEAD panels. And what a LEAD panel is, is that an expert panel comes together and they are given all the available information about a particular case, and then they're asked to come to consensus as to some sort of a ranking or definition about whether abuse occurred or whether a person got good care.
And so our panel consisted of two geriatricians as well as two doctoral level nurses, and they were asked to rate the care from one, which was poor care, all the way up to five, which was excellent care. And the reason that we did that is because we wanted to make sure that even though the facility may be providing great care overall throughout the facility, that that care actually translated down to the individual resident. We wanted to make sure that the individual resident was getting that care.
So we really spent a lot of energy making sure that these people got good care, so not only the initial database but also the nurses going out checking and making sure the facility is doing a good job the database claims they are doing, and then having a panel that ensured, based upon their medical records, that the individual was actually getting good care.
And the cutoff that we used to exclude people was between three and four; in other words, they had to be getting very good care or excellent care in order to qualify to remain in the study.
Our analysis was largely descriptive, and, again, we were trying to identify patterns, particularly what normal would be for these kind of ulcers.
So, of the 91 eligible facilities that we identified, we were able to get 63 to participate, and you can take a look at the reasons why people — or facilities, excuse me — didn't want to participate, and it was largely because they said, “Oh, you know, we didn't want to or we were too busy.” A lot of facilities actually were very fearful of us because anytime you say “elder mistreatment” and “Department of Justice” together, they run away.
Liao: The eligible residents out of all of these was 46, and out of those 46, 28 eventually participated or at least consented and were evaluated. And, as you can see, the scattered reasons why they couldn't, including three that died before we got to them.
So these are the subjects, the characteristics of the subjects, and they are very typical of what you would find in a nursing home. So I should let you know, first of all, that we ended up analyzing 24 subjects, because four of them were excluded by the LEAD panel as not meeting the cutoff. So, as you can see, most of them are elderly, and we had about half women. Most of them were Caucasian. The other 8 percent were African Americans. They were on a lot of medications. They had a lot of cardiovascular disease, a lot of urinary incontinence, but what's most important to us is that we had a high prevalence of dementia and depression as well and other psychiatric conditions.
But despite all of those people with psychiatric and dementia problems, we had a very high compliance rate. So these are not people who were behavior problems or people that the nurses couldn't provide care for. Most of them took their medications, cooperated with nursing care, got out of bed when they were asked to and participated with physical therapy, and ate their diets.
Now, these are the ranking of the stages. These are, according to the medical records, when they were first discovered, and as you can see, we only had one Stage 4 that was at initial discovery, and this was an African American gentleman who had a recurrence of an ulcer at a previous ulcer site; in other words, the previous ulcer site was scar tissue and then, when the pressure ulcer was rediscovered, it had already become a Stage 4, so it wasn't normal skin.
But we had a lot of people with what are called “deep tissue injuries,” and for the clinicians in the room — I'm sorry — for the non-clinicians in the room, what that means are these are the ones that look on the surface to have intact skin but clearly have skin problems underneath. So, classically or typically, these are, for example, blisters or things that look like blisters, fluid filled underneath. You could clearly tell that when the blister pops, that you are going to get an ulcer there, but, technically speaking, the top of the skin is intact. So we had several of those. We had several that were unstageable because they were covered up with scar tissue or dead tissue, and then we had one nurse who forgot to write down something.
Liao: Then, when we got to them, most of the ulcers, of course, by definition, were full-thickness. Then there were two other ulcers that were found that were not the index ulcer; in other words, not the ulcer of interest. So, out of the 24 individuals, we only had 2 people who had another ulcer, and then the both of those were Stage 2. So nobody in our group had two full thickness pressure ulcers, and then full loss means that you can actually see all the way down to tendon or bone or muscle.
Now, the location was rather scattered, so there was no consistent pattern, and so the location of these pressure ulcers — and the size varied quite a bit. We had some that were very small, as you can see, 12 of them are very small, but we had three of them that were actually quite large.
Then the amount of dead tissue, you could see that, to our surprise at least, the majority of them, 14 of them actually, most of the wound was covered by dead tissue. Again, for the non-clinicians in the room, the significance of that is that the traditional teaching was, well, you see a lot of dead tissue in the wound, that means that they are not getting very good care, because, you know, classically, if you open up a nursing textbook or a medicine textbook, you are supposed to have a whole thing cleaned out in order to have good care, an indication of good care, but to our surprise, most of these actually have a lot of dead tissue on them. And we'll come back and talk a little bit more, the reasons why.
Exudate, for those in the audience who aren't clinicians, means how wet the wound is, and, again, you see quite a variety. Most of them were dry wounds, but quite a few of them had some fluid in them as well.
Other information you might want to know, the average size of the facility that we had was about 100 beds. Most of these people, if you look at the standard Braden score, are not supposed to be at high risk for developing ulcers, and the traditional teaching that most of these people get these bad ulcers because they're about to die turned out not to be true as well. To my surprise, as a palliative medicine specialist, most of these people weren't on hospice or heading towards hospice. But most of them did have a prior ulcer, either at the facility or at another facility.
So what does all this mean? Well, I think we have demonstrated that, indeed, full thickness pressure ulcers can occur even under the best of care in long term care facilities, and that really no single characteristics of these pressure ulcers can be reliably used of any forensic value. In other words, you can't look at a picture of a pressure ulcer or look at a pressure ulcer and say, “Yep. You know, that one is due to neglect, or that one is due despite having good care.”
The only possible exception to that is that maybe the number of ulcers, particularly the number of full thickness ulcers. So, for those of us in the room who have been involved in elder neglect, you know that we see these cases with 20 plus pressure — full thickness pressure ulcers. So, really, these folks who are getting good care get one full thickness pressure ulcer at the most, and most of them are cooperative with care, and most of them are not at high risk or dying, but most of them did have most of the wounds covered with — or the majority of the wounds covered with dead tissue, sort of, again, standard nursing teaching.
Now, our study has several limitations. We didn't get as many people and as many facilities as we wanted. We also didn't answer that third research question; in other words, you know, can a full thickness ulcer suddenly pop up. And we couldn't really confirm the quality of care at the time that the ulcers occurred because we weren't there. We are basing everything on medical records.
Alright. So I think we need larger studies to confirm our results. So, certainly, you want to encourage funding agencies to give more money to this. I think we really need to look at this issue of whether deep tissue injury can really progress to a full thickness ulcer just in one or two days, and then what we really need, just like we did in bruising, is a comparative study to look at whether full thickness ulcers that occur under good care really do look different from full-thickness ulcers that occur under poor care.
And these are the folks on the team. As you can see, a lot of folks, a lot of expertise and a lot of work went into this study.
And, with that, thank you very much, and I will turn the time over.
Susan Chasson: Well, I want to thank you for asking me to participate in this panel today, and I want to thank Solomon for doing part of my job for me, because I was curious also as to who's in the audience. And I know some of you who are familiar with forensic nursing, but how many of you have worked with a forensic nurse? And exclude the forensic nurses in the room. How many of you have worked with a forensic nurse or familiar with what they can do and who they are?
That's kind of what I thought.
So forensic nursing is a fairly recent identification of a nursing specialty group. We've only been around for about 25 to 30 years now. The majority of forensic nurses in this country are sexual assault nurse examiners, and the other interesting thing is probably our level of education preparation. The majority of nurses who are practicing as forensic nurses probably have two-year nursing degrees, but that is changing as this field has developed, and we have more and more nurses who are getting graduate education and expanding outside of the sexual assault nurse examiner role.
How many researchers are in the room?
For those of you who are researchers, forensic nurses have something that very few people have. They have great patient populations and access to great populations. So, if you're looking for access to a population to study, you need to get to know the forensic nurses in your community.
The other thing is there are probably a very small percentage of forensic nurses who do that work full time. The majority of us — and myself included, I work as a family nurse practitioner in a family medicine residency program. So the bulk of my patient time is not spent seeing sexual assault victims; it's spent seeing mainly adult women's health patients. So we have connections into other aspects of health care, and we have other health care expertise that's not always exploited.
So what is the strength of a forensic nurse that might help deal with both of these problems? We already know about wounds because that is really where the forensic nurse's expertise lies, is wound identification and being able to document wounds and describe them properly. So we're certainly able to take the information that you have and add that to our expertise, and I think there's been a tradition in forensic nursing.
Any law enforcement out — the law enforcement, you know, law enforcement and prosecutors want nurses to be able to say this is abuse, this is rape. And there has been a lot of pressure put on us to take these studies and interpret them to say, “I know abuse when I see it,” just like you said that when you're shown a picture and is this abuse or not, and it's like, there is no way you can tell even — I mean, there's a lot of pressure on SANE's to say when we look at a picture of a woman's genitalia, we know she was raped. Can't do that. The research isn't there, and, hopefully, as forensic nurses, we are appropriately using the research to not over call what we're seeing. And so, as a forensic nurse, we need to look at the entire picture. So it's the care that's being given to the patient. It's the wound. It's the nutritional status. It's the number of nurses providing care — are there adequate nurses to provide care to elder patients? — Because that is the whole picture.
And we have a really broad understanding of both nursing practice and health care, and we can bring that to the table to look at these situations and help facilitate the discussion of whether there's abuse or neglect. I don't know that we can actually diagnose it with pinpoint accuracy, but we can certainly look at the factors and help with that decision making process.
The other thing that we are learning as we research forensic nursing is what we do best and what really applies to what Aileen has talked about, is we give patient centered care, because Aileen and I spoke a little bit yesterday. The bottom line to her research is, is talk to patients and listen to patients, and that is where forensic nurses, I think, have their strongest asset, is that we can sit down and talk to patients and listen to them. And that right there has a value in the treatment of abuse and neglect and interpersonal violence and all the things that we do. Being listened to, I think, has a real value to the patient because we know. I know from taking care of sexual assault patients that of the hundreds of patients I have taken care of, very few of them have had a criminal justice resolution.
And I'm assuming of the hundreds of elder abuse patients that you see, very few of them have a criminal justice resolution, but what's the benefit that we can provide by being there at the bedside and listening to those patients and taking their concerns seriously and letting them know that they were believed and letting them know that what they're saying is important and possibly, as was talked about in the earlier presentation, coming up with alternative solutions to make sure that they're safe and that they're cared for and that their quality of life is improved and maybe not through the criminal justice system. So that's one of the things that if you're not working with forensic nurses, we can add that to your practice.
So, to speak specifically to the studies, again, you have just added to our body of knowledge that I can't say this was a pressure ulcer caused by neglect, that, obviously, there is no scientific research to back that up. And I think we need to make sure that our nurses are being educated with the science that we can talk about this, we can describe it.
I think one of the things that we're going to need to do to educate our nurses is, we are used to seeing inflicted injury, and inflicted injury caused by blunt force trauma looks very different than, I think, a pressure ulcer, than the mechanism of how that injury is created, and from what I've heard you say today is I'm not sure we're in complete understanding of that mechanism of injury. Is that correct?
So we really don't — I mean, I know if I take my fist and punch you in the lip, I can pretty much describe that mechanism of injury as blunt force trauma, what that looks like, and that's pretty clear, but I don't think we can describe the mechanism of injury as clearly with the pressure ulcer. Is that a valid assumption?
So we need to talk about that with our nurses because part of what a forensic nurse can do, especially in a criminal justice procedure, is interpret the data and talk about it and explain it to the jury. No offense to physicians, but we, as nurses, have all had the experience of rounding with our physicians, and after the physician leaves the room, the patient says to us, “Now, what did he say?”
Chasson: And so part of my job as a nurse is to really interpret and educate the patient as to what did the science mean, and that also holds true for juries. So I think that's, again, one of our strengths.
Again, as I already said, we want to look at that whole picture of the patient who's a neglect victim and what is their nutritional status, and the other thing is, what are the medical conditions that may be contributing to this?
I am actually part of a multidisciplinary team in Utah, and they call me and say, “I have pictures of these bruises. Come tell me how you think they happened because the population we are working is non verbal, developmentally disabled adults.” And I say, “Give me the medical record because I need to know what other medical problems are going on with that patient. What medications are they on? What are their chronic medical problems? Do they have laboratory values that are not accurate, you know, that are not normal? Do they have a clotting disorder? Are they on coumadin?” The whole list is long. I can't just look at a picture and say whether — I mean, unless it's a slap mark, which they've already figured out, they don't need me for that one, I really need to look at the entire medical record and the entire patient to help them decide whether that bruise is inflicted or whether it's something that may have been accidental.
Going back to interviewing the patients, we, as forensic nurses, are taught to be very careful with leading questions, and so how I would use the research is to make sure — and I think you said this, Aileen — that when you ask those leading questions, like, “Did you fall down?” When you ask something that's very specific, that you then get the patient to describe, “So tell me more about that,” because I am going to have to show that I didn't give them the thought that their injury occurred because their grandson pushed them down.
I am going to have to say, “You are going to need tell me more about that,” because we do know, especially in some vulnerable adult populations, that they can be very suggestive and — or answer yes, and then if that's the only answer you get, that's not proof of really anything. So we have to be very careful.
We do have a group of forensic nurses who have forensic interviewing skills. I would say the average forensic nurse, that's not their expertise, but the nurses who work with child abuse have those skills, and they all have a basic understanding of what's a leading question and what's not and how to do appropriate interviewing or how to not do inappropriate interviewing techniques.
I train my sexual assault nurse examiners not to ask those leading questions if an adult has a cognitive or developmental impairment, but they may not actually have specific forensic interviewing skills, and so that's something, if we are going to work with this population, we really need to improve our forensic interviewing skills, so that we're not creating problems for the prosecutors and the investigators.
Going back to the role of the forensic nurses and interpreter, we all have stereotypes about the elderly, just like we have stereotypes about sexual assault, and so — and especially juries have stereotypes about the elderly and any vulnerable population, and I think one of the things is the cultivation of experts who can speak to these stereotypes and what the stereotypes are versus why we see other behaviors that may not be understandable to juries. And so I think that's a role also for the forensic nurse, that we can hopefully have enough expertise to be able to explain that in our practice, this is what we see with these patients and to undo some of the stereotypes.
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Date Recorded: June 14, 2010