Human Rights Watch (HRW) is an international non-governmental organization that conducts research and advocacy on human rights. One of their many areas of advocacy is with the rights of seniors. HRW is working to uncover the abuse suffered by millions of seniors across the globe. In today’s episode, nursing home abuse lawyers Rob Schenk and Will Smith talk about @HRW ’s mission with guest Bethany Brown. @bethany_L_Brown
Schenk: Hello out there and welcome back to the Nursing Home Abuse Podcast. That’s Will breathing into the microphone.
Smith: I’m a heavy breather.
Schenk: We have a very interesting show for you today. There is an organization that I’ve been familiar with way back from when I was a youngster fighting the man, as they used to say, and that organization is called Human Rights Watch. But a lot of people associate Human Rights Watch with work abroad, shining a light on atrocities done in different areas of the world, but few people know they actually try to shine the light on what’s going on in our country, in our neck of the woods, and particularly with our senior population. And we wanted to talk about that today. So today on the show, we’re going to have a special guest from Human Rights Watch, Bethany Brown, and Will, can you tell us a little about Bethany Brown?
Smith: Yes, absolutely. So Bethany, and you can follow her on Twitter, it’s @Bethany_L_Brown, Bethany Brown researches older people’s rights with the Health and Human Rights Division at Human Rights Watch. And just to be clear on something that we keep talking about seniors, when we’re talking about senior citizens, we’re typically talking about people who are 65 years of age and older.
Before joining Human Rights Watch, she worked on policy and advocacy for older people with HelpAge International and HelpAge USA where she got a research training and work at the United Nations. Her work has taken her to Kyrgyzstan, Chile, Haiti, Iraqi and Kurdistan.
Schenk: The Kurd portion of Iraq.
Smith: Ah, okay. And she has co-authored a book as well as articles and chapters on older people’s human rights. She holds a bachelor’s degree from Barnard College and a law degree from American University Washington College of Law. So we are very honored to have somebody with this amazing background to talk to us today.
Schenk: Bethany, welcome to the show.
Bethany: Happy to be here. Thank you for having me.
Schenk: Fantastic. Bethany, Will and I actually saw you speak, if I’m not mistaken, at last year’s Consumer Voice Conference in Alexandria, Virginia?
Schenk: It was Virginia, so we were like, “We’ve got to have Bethany on the show.” And you’re with an organization called Human Rights Watch.
Bethany: That’s right.
Schenk: And so can you tell us, for people who don’t know, can you tell us a little bit about what Human Rights Watch is, what it does and how you factor into that?
Bethany: Well Human Rights Watch is an international organization. We work in over 90 countries around the world and I would imagine a lot of your listeners are familiar with our work in other countries and may be surprised to learn that our largest body of work by far is in the U.S. We investigate human rights violations, expose them to the world and then use that attention to create pressure for change.
Schenk: Wow. Okay. And what’s your role within the Human Rights Watch?
Bethany: I am the older person’s rights researcher at Human Rights Watch, so I look specifically at human rights violations that older people face around the world, and I support my colleagues in those other countries and other systematic issue areas to include rights of older people in their work as well.
Schenk: Fantastic. So Bethany, so we’re all on the same page, I think that some people might have a different definition of what human right is versus a civil right versus the right of something else as opposed to left, so you know, can you kind of tell us…
Bethany: A rose is a rose is a rose.
Schenk: Right. Tell us about that.
Bethany: So my favorite definition of human rights are that they are an agreed upon international standard below which dignity cannot survive. So it’s a simple way to think about it, but human rights are what govern our relationship between government and their people, so it’s important to have that threshold.
Smith: So from your perspective then, and I love that definition too, I think that’s a very good definition, from my experience in what we do with helping seniors that have faced horrible conditions in nursing homes, it sounds like this is definitely a human rights issue, and that at least in my experience in this country, we’re not doing that well.
Bethany: We absolutely see great room for improvement. We, at Human Rights Watch, lay responsibility for the practices that we have documented, we lay responsibility for protecting people from that squarely at the feet of the government.
Smith: Yeah, I’m with you there. And what’s so crazy to me is that this seems like this should be a pretty bipartisan issue. We’re all going to get old and we all have loved ones who are elderly, so I really can’t put my finger on why we do such a bad job at this, but the treatment of the elderly here in the United States is deplorable. We were just talking with a representative in our own legislature here in Georgia and she and I both had the experience of a lot of times – I worked in a nursing home and she’s a nurse – a lot of times, families just dump their loved ones in these nursing homes and never visit them. What are you seeing out there, though, with regards to what you do? What are the issues?
Schenk: Within the United States in nursing homes, in long-term care setting?
Bethany: I’ll tell you a little bit about our research and then I’d love to unpack that idea of families dumping older people.
Schenk: Sure. Yeah.
Bethany: So first off, I’ll explain a little bit about our research and how I’ve come to have opinions about this sort of thing. In the United States, Human Rights Watch has documented widespread inappropriate use of a particular type of drug called antipsychotic drugs that sedate people, and they’re used for older people, particularly those with dementia, to sedate them, often without their informed consent. According to U.S. Government Accountability Office analysis, facilities often use these drugs to control common symptoms of dementia, and there is another way. The solution is that there are existing laws and regulations that are out there to protect us from having this happen to us if we ever go into a nursing facility, but the problem is that those laws and regulations are not being enforced to their full effect.
Smith: Yeah, it’s a big issue. I know Consumer Voice has been tackling this issue for some time. It’s used as chemical restraints, Haloperidol, Risperdal, all these things that have no appropriate use in seniors are being used just for staff convenience.
Bethany: They alter a person’s consciousness. They make it difficult for a person to interact with other people, to say when something’s wrong. And it can also make it easier for understaffed facilities, for people who aren’t trained in how to help a person with dementia, to manage, and many nursing facilities have staffing levels well below what experts consider to be the minimum needed to provide appropriate care.
So there are these nonpharmacologic interventions, so non-drug related interventions that are supposed to be used for people, but you’re supposed to check to make sure, the facility is supposed to check to see if someone’s in pain. You’re supposed to try redirecting them and helping to understand what it is that someone is trying to communicate. At that Consumer Voice Conference, there was a great line, “All behavior is communication.” So the caregivers need to figure out what the person is trying to communicate when they’re saying something over and over again or are wanting to walk somewhere else.
This is a big problem. It happens to 16 percent of nursing home residents in the U.S. That’s one in six. That’s something that we really want to shine a spotlight on because it’s a problem that does have a solution, you know?
Schenk: So Bethany, you do the research. You have statistics and analysis on inappropriate medication for the purposes of making the nursing home providers’ lives easier, not to the detriment to the dignity and the health of the resident. What happens with this information? Is it more just advocacy? You go and talk to legislators at the state level, federal level, or do you hand this over to Departments of Community Health for enforcement? What happens with that information that you’ve gathered and compiled?
Bethany: We shout it from the rooftops. We’ve done everything we can to shout the message that this problem is not fixed, it’s not going away. And though some of the ways we’ve been working on it are, like you said, having meetings with state legislators to explain to them how they could better, how their opportunities strengthen their state laws. We’ve met with national legislators and talked with them as well.
We’re working together with journalists all over the country. We had well over 500 newspaper articles written about this topic because this did this research in six states around the country and did media outreach in each of those six states to make sure that there would be plenty of local coverage because it’s really important that policymakers understand the problem and have a human face for it, that it’s not just the numbers. That’s an important part of our methodology. We use people’s own words to tell their own stories, and then have data analysis and legal analysis to back it up. But it’s also really important that the general public know about it. That’s why I’m happy to be talking with you and I’m glad that you’re looking at this issue on your program.
Schenk: And Bethany, we’re glad to have you on here, but what were the six states and, if you know this, what were the results other than a lot of publicity? Are you aware of any legislative action in those six states to address that issue?
Bethany: We did the research between October 2016 and March 2017 in California, Florida, Illinois, Kansas, New York and Texas. We did over 320 interviews with people living in nursing facilities, their families, nursing facility staff, as well as officials, advocacy organizations and others including long-term care ombudsmen, those people.
And there was a push to change the rules in Kansas. There is a draft bill in the state legislature on informed consent on the use of antipsychotics, and that didn’t make it through their state legislature. I’m hopeful for this coming legislative session next year. And there was also some energy around revised informed consent bill in California, but I’m not sure whether that was going to move forward this year.
Schenk: I was going to – that’s a really interesting cross-section of the country with the selection of those six states. I feel like you’ve got a mix of liberal, a mix of conservative.
Smith: A mix of Southern, Midwestern.
Smith: You definitely have to include Texas any time you’re doing nursing home issues, but yeah, that’s a very good cross-mix.
Bethany: We had an amazing fellow, Hannah Flann, who covered almost all of that ground, and it’s really admirable work. We also put together a clickable map that’s available on our website, www.hrw.org, that allows individuals to enter their zip code or just click through and see what the rates of antipsychotic drugs use in nursing homes and nursing home staffing levels are for their specific county along with the number of residents in each county and the number of facilities.
Schenk: Is that nationwide of just among those six states?
Bethany: We did that nationwide. That’s available across all states.
Smith: Wow. That’s some pretty heavy data to gather. I didn’t realize you guys did that. At the end of this, we’re going to put all the contact information for people to go, because that is an invaluable piece of information to have when choosing a long-term care facility for your loved one, because this is a huge problem. I mean these places are so understaffed, and like I had mentioned earlier, a lot of times, not all the times, but a lot of times, family members are not really involved, and so you’ve got somebody, Mr. Johnson, who has dementia, and he’s going into other people’s rooms, or he’s just a handful for the staff because they’re not trained to find out what is he trying to communicate, an easy solution is give him Seroquel, give him Ativan, give him something to make him sleep. And that is a restraint.
Bethany: It’s so dangerous. These drugs nearly double the risk of death in the span of 10 weeks for a person who’s over 60 with dementia. It hastens death for older people, and yet, it’s being administered at these high rates. I’m glad that you brought us back to that question of family members and family member involvement and older people going into these homes, because I think it sort of gets at the first part of what we were talking about on what are human rights? What is this sort of basic level of human dignity?
And part of what makes that up is the idea of the quality, that we all are entitled to the same treatment, and I think there’s a lot of sort of implicit and inherent ageism in the way that we think about nursing homes and assisted living and in general, this idea that older people will inevitably go and just move to this other place. And I think that it’s really dangerous. We, Human Rights Watch, has been working for many years on the rights of orphans in orphanages, the rights of people with disabilities in psychiatric institutions to live in their communities, to live with their families. And older people have that same right to live with support in their communities, and part of the bigger solution is having home-based care and support or community based care and support where someone can go to the daycare center for the day or something that allows them to stay in their own homes, allows them to stay connected to their own communities and families and way of life and choices.
That’s the position in the world that we want to see, where older people have an equal right to that and the institutionalization of older people isn’t sort of taken on this is a given life stage. It’s so much more than that because institutionalization, setting people apart, having people segregated from the rest of life has inherent risk to it. When you’re cutting somebody off, when you’re forcing somebody to depend entirely on a facility for their access to the outside world, for their humane and decent treatments when it comes to their medication, when it comes to allowing them to decide little things, like when they’re going to wake up or what they’re going to have for breakfast or what they’re going to wear or when they’re going to get dressed, when they’re going to go to sleep, those little things add up to what it is to be able to live for yourself or to be institutionalized and have no control over those things.
And the risks of having those rights violated, which are what we’ve documented here with our research, in this case the risk of inhumane degrading treatment being basically shut up and drugged, that’s what we’re showing. We’re showing what can happen when someone is locked away or no one else is looking. And we want older people to be able to live with everyone else, to be able to have a right to have the support that they need to live with connection, with human connection outside of institutions.
Smith: And you know, you bring up a good point about choices and what you want for breakfast and when you want to get up. It’s not – and when I used to work in these places, what really irritated me were the small choices, because it’s not always just the horrible circumstances that we see in our cases or issues of chemical restraints, but it’s even little things. If you’re an 80-year-old woman who’s been independent for all of her life and now somebody’s telling you, “Well you can’t have this for breakfast,” or “No, you have to get up at this time,” that’s very undignified. That’s an absurd way to treat somebody who has witnessed 80 years on this earth. I mean once you enter these facilities, it seems like you start giving up those rights.
And you’re right – having people, having programs, and we’ve got one in Georgia that we’re trying to get off the ground, hopefully it has some teeth to it, having people stay at home seems to be a better guarantee of those rights.
Bethany: And obviously abuse can happen anywhere.
Bethany: There’s no doubt about that, but there’s a problem with institutionalization with the higher risks for a lot of the violations that we’re talking about, and it fits with the Americans with Disabilities Act that talks about the least restrictive alternatives for places for people to live, and that’s great that you’re working on something to help people be able to have meaningful choice about where they live, because if you’re choosing between going into a nursing facility or just going without and trying to survive, that’s not much of a choice at all.
Smith: No, it’s not.
Schenk: Well Bethany, if someone in our audience was interested in reaching out to Human Rights Watch or to you, what’s the best way?
Smith: Or just learning more.
Schenk: Or just learning more about Human Rights Watch, what’s the best way they can get in contact with you and your organization?
Bethany: Well if they’re interested in learning more our work on older people’s rights, we have a great website, and I’ll send you the link – it’s sort of a long one to talk about on the air – that links to our work on older people’s rights on the www.hrw.org website, and if an individual would like to contact me directly, Twitter is one of the best ways to contact me.
Schenk: And that’s @Bethany_L_Brown.
Bethany: That’s right.
Schenk: All right, very good. Okay, well Bethany, that’s been a lot of great information. You’ve shed a lot of light on what you do and some of the issues that our seniors in this country are facing, and we really do appreciate you taking the time and coming on the show. We’ve talked about before you came on how you were under the weather, so we doubly appreciate you taking the time.
Smith: And we appreciate the work that you do and your organization does. We need more advocates like that, so please keep fighting the good fight.
Bethany: Thank you so much for having me. It’s been a pleasure.
Schenk: All right.
Smith: Thank you.
Schenk: Thanks, Bethany.
Bethany: Okay, take care. Bye-bye.
Schenk: You know, she is soft-spoken, however, having in her bio that we read at the top of the show, she’s been to Chile, Haiti and Kurdistan. So those aren’t the nicest places to be at.
Smith: Those are hazardous places, absolutely.
Schenk: Especially the Kurdistan. You know what’s strange? I’ve always wanted to go to Kurdistan.
Smith: That’s the place that Hussein chemically attacked.
Schenk: Yeah, and their population is, at least when I was in college, this was 20 years ago, you learned that in Political Science 101 that the difference between a nation and a state and what a nation-state is, a nation being a population that has a common ancestry, culture, things like that, and then a state is literally a physical area. So if you’re a nation-state, you have those two things. You can be a nation or you can just be a state. So Somalia might be a state, barely, because they don’t have a nation. And I remember we learned, it was interesting, that the Kurds are the largest nation without a state, and so now that’s a big deal that they’re fighting for the autonomy of Kurdistan in northern Iraq.
Schenk: But anyways, I forget where I was going with that, but that’s why I’ve always wanted to go there, because I feel they’re also the ones that are doing a lot of the damage and fighting back ISIS. So anyways, Bethany spent some time there.
Smith: Yeah, but it’s very encouraging when we find organizations like this because there is a huge special interest group that represents the nursing facilities that is always lobbying Congress, so it’s good to have somebody on the side of the elderly and on the side of the consumer also working diligently to bring these issues to light, so absolutely great having her on.
Schenk: That’s right. And I believe other than reminding the audience that it’s cold and flu season.
Smith: Well she had a cold and flu too. I think she may have given it to me on the radio waves.
Schenk: Yeah, so other than reminding everyone that this Saturday is National Chip and Dip Day, I believe that’s going to conclude this episode of the Nursing Home Abuse Podcast. You can catch new episodes of the Nursing Home Abuse Podcast every Monday morning on your favorite podcast application.
Smith: Your favorite one.
Schenk: Your favorite one.
Smith: Spotify, iTunes, Pound Puppy, whatever it is, we’re on there, Spotify, we’re on there. But if you want to watch the video, you can go to our website, NursingHomeAbusePodcast.com.
Schenk: Or our YouTube channel.
Smith: Or our YouTube channel and remember to click “like” and “subscribe” if you do.
Schenk: Very good. Yeah, please do that. And with that, we’ll see you next time.
Smith: See you next time.
Thanks for tuning into the Nursing Home Abuse Podcast. Nothing said on this podcast, either by the hosts or the guest, should be construed as legal advice, nor is intended to create an attorney-client relationship between the hosts or their guests and the listeners. New episodes are available every Monday on Spotify, iTunes, Stitcher or on your favorite podcast app as well as on YouTube and our website, NursingHomeAbusePodcast.com. Again, that’s NursingHomeAbusePodcast.com. See you next time.