Gelila Selassie: Hi, everyone. Thank you for coming to our webinar today on Residents’ Decision-Making Rights in Nursing Facilities and Assisted Living. My name is Gelila Selassie. I’m an attorney at Justice in Aging, and I’m joined here by my colleague, Eric Carlson. So just a few logistics for the webinar today. Everyone is on mute, but you can ask questions for any substantive questions or technical concerns using the Q&A functions. If you’re having any problems logging into the webinar, you can send an email to trainings@justiceinaging.org. The recording slides, other materials for this training, as well as past trainings is available by searching our resource library at justiceinaging.org/resourcelibrary. And then you can enable closed captionings for this webinar by selecting the CC option from the Zoom control panel.
So just a little bit about Justice in Aging. We are a national organization that uses the power of law to fight senior poverty by securing access to affordable healthcare, economic security, and the courts for older adults with limited resources. We’ve been doing this since 1972 with a focus primarily on those who have been marginalized and excluded from justice, including women, people of color, LGBTQ+ individuals, and people with limited English proficiency. We also have a very deep commitment to justice, and we believe that to advance justice in aging, we have to ensure that everyone has access to what they need as they age without discrimination, regardless of race, gender, gender identity, sexual orientation, ability, language, or country of origin. And we push for policies that will ensure that those who are experiencing the greatest barriers to economic security, healthcare and housing can exercise their rights and fully access the services and programs that they need.
And then we strongly encourage you to join our network if you haven’t already to receive alerts as well as trainings and materials. So you can do that by going to justiceinaging.org and clicking on the sign-up option or send an email to info@justiceinaging.org. So for today’s webinar, as I mentioned, we’ll be discussing all the different ways that residents can enforce their rights in nursing homes and assisted livings. And so to start, we’re going to look at some of the barriers to residents’ rights. And so when we think about it, we know that there are, it might seem pretty basic, but residents do have rights enshrined under the law. And specifically that is the Nursing Home Reform Law of 1987. This requires facilities to provide all the services a resident needs to attain or maintain the highest practicable physical, mental, and psychosocial wellbeing.
These protections do not discriminate based on payer source, whether they’re private pay, Medicare, Medicaid, or private long-term care insurance. All facilities have to comply with this law. And most, if not all of the nursing home regulations that expand on these protections were promulgated to further the objectives of the 1987 law. So it’s really crucial to emphasize that residents do indeed have these rights, even though it often doesn’t feel like it. So if these protections exist, then why don’t residents push back more often against facilities that we know are failing in these ways? Well, first of all, residents might not always be aware of the Nursing Home Reform Law and the supporting regulations. Facilities typically have to post the legal rights of residents, but just because a few posters are put up, it doesn’t mean that it’s necessarily accessible or meaningful to a resident. So a facility can’t say, “Oh, well, we let them know because they had a few posters up.”
It’s really crucial that these rights are reiterated often to residents in a way that is accessible to them so that they clearly understand what their rights are. Residents can also very often be overly deferential to the facility. From the resident’s perspective, nursing homes appear like these very complex, organized facilities with a lot of clinical and administrative staff who have a lot of expertise. So if a resident isn’t knowledgeable of their own rights or of a facility’s potential wrongdoings, then it’s very easy to assume that this very large established operation knows who’s best. And so if they know who best, then who am I the resident to question this facility that’s been around for X number of years or have had X number of residents? Clearly they must know best. Of course, we know that that’s not always the case, but again, coming from a resident’s perspective, it’s not unreasonable for them to feel that way. Residents, just like everyone else, can also have a fear of confrontation. They may not want to rock the boat or make someone uncomfortable in any regard, even outside of a nursing home setting.
But on top of that, nursing home residents have a very understandable fear of retaliation given the circumstances that they’re in. They are staying in that nursing facility all day, all night, in most cases for weeks, months, years on end. And so they have a very strong fear of this awkward situation or even of possible retaliation that things will be worse for them. They could receive worse care, receive fewer benefits or anything like that if they stand up for themselves, even though they do have that right to. And then there’s a huge culture of non-compliance. When bad behaviors keep going, it makes it that much easier for everyone, including a resident, to accept that outcome, even if it’s potentially harmful. And so then there becomes a sort of subdued sort of acceptance that comes with repeated bad behaviors. And at some point a resident’s just going to throw up their hands like any of us would and say, “What’s the point? I might as well just accept this.”
And that mindset, unfortunately, will only make a facility’s behavior worse if a facility is already behaving badly. And then lastly, nursing home residents are incredibly isolated. And by virtue of being in a nursing home and having high health needs, residents often have limited interaction with people outside of the facility. So given that isolation, residents will often feel this inherent pressure to just go with whatever the facility does since they are so isolated. Even if they do have those protections and those support, it doesn’t always feel like it. So what happens if a resident allows these bad behaviors to continue? Well, residents will almost always experience lower quality of care.
We’ll talk about some things like the use of antipsychotics and other things like that later on, but very often residents will feel neglected or given improper care because no one is standing up for them, including the resident themselves for the reasons that we just said. And to be clear, there are very often incredible staff, incredible nursing staff within facilities who care deeply for the residents, but even that, they might be limited in what they can do for the resident because the facility isn’t providing enough overall quality of care or the facility overall isn’t abiding by the nursing home or formal law. And so on top of those physical or medical risk factors, residents can also feel just very despondent. It’s incredibly sad to leave your home or leave the environment that you know to enter a facility and again, being in poor health or having high health needs.
On top of that, if you’re in a position where you don’t have any autonomy, then it just increases this despondency and these feelings of isolation or loneliness. And we know particularly from the pandemic, how devastating that can be when on top of whatever health ailments are going on, there’s also that really depressive event where you just feel very alone when you don’t have the kind of support that you need. And then most notably, accountability is really crucial and without accountability, facilities will only engage in even worse and potentially dangerous behavior. The whole system of accountability exists in order to punish and deter bad actions so that even worse things don’t happen and without anybody standing up to even minor issues when those aren’t being addressed, then it just gives a facility more agency to continue doing these bad actions and potentially even worse things.
So one of the biggest ways to enforce a resident’s rights is through a properly executed comprehensive care plan. One really crucial thing to take along throughout this process is that residents must be involved in these comprehensive person-centered care plans. These plans have to be developed and implemented with the resident being at the center of these plans. The regulatory language here defines person-centered to mean the focus is on the resident as a locus of control and support the resident in making their own choices and having control over their daily lives. So it’s really interesting that the regulation uses this locus of control language because they’re really trying to emphasize that the resident and their family member or representative has all the agency and control. They’re not just incidental, they’re not just here to check off a box or sign at the bottom line, but they are really the ones directing this whole operation.
And as we’ll go into some of the examples later on, that’s not what we see at all. Very often residents don’t realize that they are the ones that are 100% in control of what their care needs are. And so why is it so important to have such a really good care plan? Well, first of all, again, this isn’t how it’s always done in practice, but care plans are not supposed to be proforma or boilerplate. Care plans are meant to be very detailed and incredibly individualized to each resident in order for the resident to feel most comfortable and in control of all aspects of their life in the facility. The idea is to make sure that not only are their clinical health needs met, but that they are thriving in the facility and that they don’t feel like they’re in some sort of prison environment. They’re supposed to feel comfortable. They’re supposed to have autonomy, have dignity.
And so care plans should be reflecting all of that. And too often it’s just this sort of boilerplate, almost contractual language that someone just signs off as, as if it’s just something rudimentary, a rudimentary exercise they have to go through. And that is very much not the case and it’s not ever intended to be that sort of boilerplate. Care plans also provide nursing home staff with clear instructions on the resident’s care needs so that everyone who’s involved in the resident’s care is made aware of all of the residents’ needs. And as I mentioned, this isn’t just their clinical needs, like their diagnoses or their medications, their therapy sessions. This also has to factor in their hobbies, what they do for leisurely activities, what they do for fun, any sort of like puzzles or little things like that that might make them feel better, might help them with any cognitive impairments that they have, any religious considerations or cultural considerations.
All of that is really important for a resident to feel like their whole selves, and all of that really should be documented in a care plan. And then a detailed written care plan is also easy to reference, or at least easier to reference, to make sure that the resident is on track to meet their goals. And if not, then allows the facility and the resident to make adjustments so that they’re back on track with their care goals. And so this is really important because the more detailed it is, the easier it is to pinpoint if something isn’t happening the way it should be or if something is going wrong. Then the resident can go back and say, “Well, wait a minute, this isn’t right.” If it’s, again, just these boilerplate, very checklist-y type of documents, then it’s much harder to go back and check if these very individualized care needs are being met.
So for that reason, again, multiple copies of a detailed written care plan is really important. And then on that similar note, care plans provide something tangible for the resident or their family member to cite to if a facility is being deficient, since all of the resident’s needs and all the facility’s obligations have been clearly expressed in the care plans. And so what all is included in a care plan? There are several components of a care plan, and this is not at all exhaustive, but these are the very most common pieces that really need to be addressed at a minimum. So first is the relevant medical and health information for the resident. So this can include things like any diagnoses, prognoses, allergies, things like that. It can also include specific therapies, treatments, or medications in order to manage or treat the resident’s conditions.
And in that vein, it’s really important to note that this doesn’t just mean like prescription drugs or physical therapy or these very highly clinical things. Even minor things like they’re taking over the counter medications, some very basic therapy, like if they need a heating pad, if they need to leave their legs elevated or another part of their body elevated a certain amount of times throughout the day, that’s really important to document as well. Just because it’s something minor or it’s not something that requires a physician sign off doesn’t mean it’s not worth including in the care plan. So again, it’s really important to be broad about all the things a resident needs.
Care plan should also include the nutritional needs of the residents, including any dietary restrictions. And the surveyor’s guidelines a few years ago highlighted that facilities really must take into account the residents’ religious or cultural accommodations when it comes to nutrition. So it’s really critical, again, to make sure that the resident feels like their whole self, that they’re feeling comfortable in this facility environment by having the nutrition that they’re accustomed to and that they need. The residents’ visitations and social interactions should be documented as well. So this could mean that the resident might prefer visitors first thing in the morning, for example, when they might be more alert. So that suggests that the facility should make sure that the resident is ready to go first thing in the morning to see visitors. Now, it’s important to note that these care plans aren’t meant to be restrictive to the resident.
They’re not meant to be these contractual obligations. So if a resident prefers somebody first thing in the morning, it doesn’t mean that there’s no chance of them having visitors later in the evening, and we’ll discuss visitation later on. But these care plans, again, are meant for the benefit of a resident so that the facility can do its best to comply with all of the residents’ needs, but recognizing that things can change and maybe at some point a resident might prefer visitors later on at night or throughout the day or at any time. So while we recognize some of their social interactors, their hobbies, their visitations, it’s really important to note that things like these can and often will change and the facility must be amenable to that. Care plan should also include the physical, behavioral, and cognitive supports that a resident might need. So this could be mobility devices, lifts, queuing or guidance, or any sort of accommodating language or communication supports.
The goals and outcomes of the resident’s care is very crucial, especially if the resident wants to try to leave the facility or be discharged from the facility. Far too often, residents think that the facility has all the control about when they leave and how they leave. And in that case, the facility would be a prison, right. If the facility manager gets to decide everything about the resident, then the resident has no control. The resident is a prisoner. But if a resident wants to try to improve their situation, to leave, to be in a better place where they can return home, or if they want to be in a less restrictive setting and want to find the way to do that, then the care plan should try to document all those efforts and indicators that the resident can try to achieve in order to reach that goal.
So it’s really important that a facility doesn’t say outright, there’s no chance of you going home too bad. That’s really not what these facilities are meant for. They’re really intended to try to improve the resident’s situation or at least make them stable enough in order to meet their goals. And crucially, the resident’s preferences or choices regarding care, all their care needs, activities, and just all the things they need to live an autonomous life. As you mentioned, this is not limited to clinical or medical considerations and it’s not exhaustive. All the things that resident would have been enjoying in their home, they should be able to enjoy in the facility, whether that’s puzzles, reading, game nights, social interactions, whatever the case may be. And the facility should do everything they can to replicate that in the facility. And so that should be documented in the care plan as well.
So in terms of the care planning process and the timeline, the comprehensive person-centered care plans must be completed within seven days of the baseline care plan assessment, which is done about 48 hours of admissions. So these comprehensive care plans are typically done about a week, you know, seven to nine days after the resident is admitted to the facility. So they’re done pretty quickly. The care plan includes several members of an interdisciplinary care team, as well as the resident and their representative. And as you noted, comprehensive care planning is really essential, not just for the resident’s personal health, but also for their dignity as well.
So who all is part of this interdisciplinary care team that’s part of the care planning process? At a minimum, it must include the resident’s attending physician, registered nurse and nurse aides, any dietary nutritional staff, and other professionals deemed necessary or requested by the resident. So this could be like a speech therapist, physical therapist, any counselors, anybody like that. It’s really important to note that the resident’s family member or representative must be included to the extent practicable. So this might mean that the facility might need to arrange the care planning conference through a telephone conference or video calls if they’re not able to come into the facility physically, might need to adjust the care planning conference at a time when that resident’s family member is available, but it’s really important that they have to be included. And a written explanation is needed if the resident and the resident’s representative don’t participate.
And so one thing that’s really important to note is scheduling a care conference at 11:00 AM on a Monday morning when the resident’s daughter is working until 4:00, the facility can’t just write up and say, “Well, too bad they couldn’t join,” without even trying to accommodate that individual. They should try to say, “Well, let’s meet on a lunch hour. Let’s do a teleconference. Let’s try to find some ways to make sure that the resident feels like somebody is in their corner with this process.” And so here’s some advocacy tips to ensure that a resident’s care plans are being completed properly. First is to make sure that the residents are aware of their rights to reasonable accommodations and preferences. Again, think back to that language of the resident having the locus of control and really being at the center and in charge of their own care.
Crucially, it’s important that they request plenty of time for a care planning process. If the facility shows up and says, “Well, we scheduled this 15-minute care planning conference this afternoon.” Lots of reasons why that’s not great that we’ll talk through, but the resident doesn’t have to accept that. They can say, “I’m requesting an hour. I’m requesting 45 minutes, an hour and a half.” Anything reasonable to really say, “I need time to fully digest this and to have a meaningful conversation about this,” is well within the resident’s rights to do and the resident should do. Don’t just accept whatever timeline a facility provides. And then it’s really crucial for a resident to brainstorm a list of wants or goals and to be very broad about it. Don’t just accept any boilerplate or checkbox that the facility provides. And as you said, time and time again, this is more than just the clinical stuff.
This is their religious and cultural accommodations, their hobbies, their visitation, everything like that. And then crucially, it’s important to request a written copy of these comprehensive care plans so that the resident and their family members have something that they can very easily refer back to make sure things are going okay, or if they’re not, something that they can clearly point to say why the facility isn’t doing well enough with their care plan. And so here’s a hypothetical of a poor care planning process. And again, it’s something that happens all the time.
So Sammy was recently admitted to the nursing home. At breakfast one day, a staff member told her that they scheduled a 15-minute comprehensive care planning meeting after lunch later that day. At the meeting, Sammy was not able to follow what was going on since she had just taken medications that make her drowsy. So she just nodded her head and agreed to everything ’cause she didn’t really understand what was happening. She told the staff that she wanted to return home as soon as she was able, but the staff told her that was unrealistic and she was probably just going to stay in the facility forever. So she signed this pre-populated form with her care plan and proceeded off with her day. So as you can see, that was very problematic. She wasn’t aware of what was going on. She just signed off on a boilerplate pre-populated form.
She was alone. She was given a very quick meeting time with not an opportunity to have somebody there with her. And so let’s switch that to a much better care planning process. Sammy is told that they scheduled a care planning meeting for that afternoon. Sammy, knowing what her rights are, requested a meeting later in the week when her son would be available and to schedule the meeting for at least an hour. She also requested a morning meeting when she is most alert and asked the facility to set up a video conference for her son. Sammy’s son wrote a list of all the things that were important to Sammy, including her daily routine, her hobbies, cultural needs and goals. During the meeting, Sammy expressed a desire to return home, which staff detailed in the care plan. Sammy and her son both received copies of the care plan.
So again, in this case, you can see that this isn’t a huge lift for most facilities to say, “Let’s wait one or two days. Let’s make sure son has plenty of notice. Let’s set up a Zoom or video call and let’s plan it for an hour.” These aren’t very demanding asks at all for a resident to ask of their facility for something as crucial as their care plans. And it makes all the difference for the resident in terms of their own autonomy and their dignity and the ability to have somebody like their son in their corner to help them throughout this process.
So now we touch on visitation a little bit, but we’re going to go into a little bit more detail about visitation in long-term care settings. So it’s crucial to note that residents have a right to receive visitors in nursing homes. There’s regulatory guidance for this that states that a resident has a right to receive visitors of his or her choosing at the time of his or her choosing, subject to the resident’s right to deny visitation in a manner that does not impose on the rights of another resident. So generally, residents have a right to receive visitors with very few restrictions. Again, with the effort to try to maintain the resident’s dignity and autonomy to see family. And we’re not trying to treat a nursing home like a prison. A resident has a right to receive their family members, their friends, their members of their church or faith-based community as often as possible, at least to the residents, unless the resident requests otherwise.
And so access to visitation is always available to the resident, but whether it’s immediate or not sort of depends on who that visitor is. So facility has to provide immediate access to the resident’s legal representative or guardian, the long-term care ombudsman for that area, a protection and advocacy group, the resident’s physician, residents’ family members and other relatives, and others who are visiting with the consent of the residents. So if a resident consents to having a extended family member or friend visiting, then a facility really must provide reasonable access to them, to the extent possible by the facility. Now for others, particularly health, social, or legal service officials, facility must provide reasonable access to those individuals as well. So the facility cannot restrict access to those individuals, but if a resident is in the middle of a therapy session, if they’re sleeping, anything like that, then it might be reasonable for a facility to say, “Can you wait 30 minutes? Can you wait an hour?” Something to that extent.
So on top of the right to receive visitors in nursing homes, there’s also a right to visitation in home and community-based settings. And the basis for this is from the HCBS settings rule, which applies to residential facilities that accept HCBS funding. Typically, these residential facilities are things like can be assisted living facilities, group homes, or other provider owned or controlled residential settings. And the HCBS settings rule is massive and includes many, many provisions to try to ensure that HCBS funds are going to facilities that are more like homes and less like institutions. But as part of that initiative, the settings rule clearly states that facilities must allow unrestricted visitation and that individuals in these settings are able to have visitors of their choosing at any time. So even nursing home visitation is incredibly broad, as is HCBS settings with the goal of making it as similar to the resident’s home setting as possible.
As I mentioned, there are very few restrictions on visitation. Or excuse me, here’s some examples of restrictions on visitation that we see far too often. One is allowing a maximum number of visitors per day or stating that only certain types of people can serve as visitors. So for example, saying that you can only designate three visitors or three immediate relatives only can ever visit you. Again, this is something that you might see in a prison and that’s not what these facilities are meant for. They’re meant to give the individual dignity. They’re not meant to punish an individual for needing long-term care. And so having these sort of arbitrary designations and limitations does nothing for the resident. It’s really limiting and it’s nothing like they would have in their own home. They would be able to have whoever they wanted in their own home unless they didn’t want them there.
And so that again needs to be replicated as much as possible in a long-term care setting. Only allowing visitors during visiting hours is another improper restriction, stating you only have 20 minutes, 30 minutes with visitors. Of course, a resident might have a therapy session, might need to eat, might need to bathe their understandable time. Associated timing that might impact time with visitors, but that’s different from restricting a visitor to only a set number of minutes or hours. And then it’s also improper to require prior scheduling or an appointment to have a visitor visit somebody in a nursing home.
Again, when someone’s in their own home, they’re not asking their son or their daughter to request an appointment or schedule an appointment to visit them. And so it doesn’t make a lot of sense for that to be the case in a long-term care setting. So as I said, there are some instances when facilities can restrict visitors, but they are very, very limited. And in practice, we see this being applied much more broadly than it should. The most obvious and understandable situation is if a resident requests no visitors. Crucially, a facility cannot assume a resident doesn’t want visitors. Just because they say, “Oh, I’m tired,” or, “I’m annoyed,” or, “I’m this or that,” facilities cannot assume that presumption onto the resident.
But if they clearly express, “I don’t want to see anybody today. I don’t want any visitors this week,” or anything like that, then obviously a resident is not required to have a visitor that they are not requesting to see. Another pretty understandable restriction is if the person-centered care plan clearly documents justified reasoning for restricting visitation. But again, this cannot be assumed by the facility. And this is assuming the care plan was properly done, like in our second hypothetical earlier, not one of those boilerplate proforma checklist things that has some kind of visitation restriction language. But if there’s some clearly agreed upon reason by the resident and the facility for restricting visitation, then that’s permissible. And then this last one is a little bit more difficult, but a facility must have written policies and procedures on visitation, particularly if there are restrictions that are “clinically necessary or for safety.” And what’s really important to note here is that this last bit is incredibly subjective, which is really problematic because it could and very often does lead to facilities being overly restrictive on visitation when it comes to clinically necessary or safety.
Clinically necessary, we can think of the very, very, very early days of the COVID-19 pandemic potentially when there were all these mandatory stay in place orders, things like that. But clinically necessary, if it’s outside of the pandemic, clinically necessary doesn’t mean somebody has allergies and sneezes once or twice in the lobby, so now they can never see their relative ever again. And so we’re worried that a facility could apply this way too broadly. There’s ways of checking that an individual’s okay, that the resident’s in good health if they’re masking, if they’re a safe distance without absolutely restricting access to visitation altogether. And same thing for safety. Safety can be something that a facility is overly restrictive on. And so it’s really important to question why a facility is deeming this unsafe. What are their policies behind it? What are the specific circumstances? How can it be mitigated instead of just accepting a facility’s restrictions point-blank? And so with that, I’m going to pass it over to Eric to discuss some of the over medications that we’ve been seeing.
Eric Carlson: Thanks, Gelila. Next slide, please. So I want to start by talking about I think the most common legal arguments dealing with antipsychotics over the years. First of all, they’re inappropriate because they’re oftentimes used to sedate residents and they’re being used inappropriately because these are medications that are designed to treat generally psychiatric conditions. But you’ll see them used in nursing facilities being administered to residents who historically have not had psychiatric conditions to address so-called behaviors. Again, in blunt language, just being used to keep the residents manageable, which is inappropriate. Gelila talked about care planning. That’s not good care planning, that people should be engaged, they should have something to do with their lives, they shouldn’t be warehoused and overmedication is obviously the wrong response. Historically, addressing this through the regulations has focused on these subsections listed below: the regulatory provision that prohibits unnecessary drugs; the other provision that requires that use of psychotropic meds be supported by specific documentation; and then some other regulatory provisions that specifically limit use of medications that can be considered chemical restraints, that is medications used for the purpose of keeping people docile and in place.
The problem with changing behavior through these regulations, or one limitation of that rather, is that it requires some clinical arguments. If you’re asserting a violation of one of these regulatory provisions, you have to fight it out whether a drug was necessary or not or whether it’s supported by documentation or whether the use in this particular instance can be classified as a chemical restraint. Next slide, please. So one possibility to address that is instead focusing on informed consent on the front end, instead of after the administration of the medication making arguments about how it was inappropriate or is a chemical restraint, instead trying to do some advocacy that prohibits the administration at the front end or stops it as quickly as possible without having to get into some medical arguments about what’s necessary or what’s a restraint. Most people on this webinar are probably familiar with the concept of informed consent.
If you’re given a med, if you have any kind of outpatient or inpatient procedure, if you pick up a medication at a pharmacy, for example, you’re given information about the medication or the procedure, the pros and the cons, what this medication’s for, the known side effects, and you’re asked to consent. Yes, I understand this. I’ve been given an explanation of the pros and cons of this medication or this procedure and I choose to go forward. That’s the law across the country, provisions of state law, of common law. In addition, in a nursing facility, there’s a specific regulatory provision that addresses informed consent and choice of healthcare. The citation is listed here in the bullet point. So in nursing facilities, there has always been a strong legal basis for the common sense argument, common sense proposition that medications shouldn’t be administered unless people consent to them, unless they’ve been given an explanation what the purpose of the med is and they have affirmatively chosen to receive it.
That oftentimes hasn’t played out in practice. How does it play out wrongly that it becomes a private communication almost between a facility staff and the physician and the resident and/or the resident’s family may have little idea of what’s being administered or feel that they don’t have any real authority to change the medications that the resident is being given. That’s been the reality on the ground and I think in general surveyors have accepted that as well, that’s the way it is. That’s the way it’s always been. Go on to the next slide, please. And here I’ll take some credit for Justice in Aging. We did write an issue brief on this issue a few years back pointing out this problem and advocating that informed consent be understood and honored as a way of addressing this problem. And again, I’d like to say in response to that, to a great extent, the guidance issued by CMS changed to reflect this reality.
This was guidance that was issued just in the early part of, it became official rather in the early part of 2025. And now it says that, “The resident recognizes the resident has a right to accept or decline initiation or increase of a medication and the medical record has to include documentation that the resident was informed of these alternatives.” So for the first time, there is recognition in the surveyor’s guidelines that the informed consent is operative within nursing facilities as well. And you can find this in the surveyor’s guidelines, it’s appendix PP to the CMS state operations manual, which you access through the CMS online manuals. Next slide, please. So in the guides, there’s additional reference to this as well during a discussion of opioid use, the guidelines cite residents informed consent rights. And then also as far as enforcement is concerned, there’s also inclusion of this in the critical element pathway.
The surveyors are instructed to ask if residents were given informed consent. And if the answer is no, the surveyor under this pathway is instructed to cite for violation. Assisted living of course is state specific, and so the laws could vary from state to state as to, the assisted living law is going to vary from state to state and probably is not going to address the issue in this way. Although there may … I take that back. There may well be resident rights that talk about consent to healthcare, which would address this. But in any case, whether you’re in a nursing facility or assisted living, the basic common law basis of informed consent is there. So just as if you and I in our lives wouldn’t be expected to just take medication because a doctor prescribed it. The same thing is true if we were living in a nursing facility or an assisted living facility, that’s our right to decide whether we want a med or not.
It’s supposedly for our benefit obviously and can’t be administered without consent. So if you have a situation like that as a practical matter, I know when I did direct service, I can remember problems like this and the family would say, “Mr. Carlson, we don’t know what’s going on. They’re giving my mother something and I don’t know what it is. It’s really problematic.” And I know at that point I would communicate with the facility or write a letter and say, “You can’t do this. You can’t do this without a consent, without consent. There evidently is no consent. The resident and the family member are unaware of what the med is and haven’t been given any information whatsoever. Be on notice that this is improper. It’s a battery. It’s being imposed on the resident without consent.”
To just change the balance of power, the facility needs to understand that the resident has the leverage here. And if the facility doesn’t have documentation that the resident has consented to this med, they’re putting themselves in jeopardy. We can move to the next slide and the next topic, and actually we can go two slides forward. Thanks. We’re going to talk about voting. It’s in the context of the CMS guidance, but I don’t want to over, put undue authority within the guidance because there’s some basic principles that preceded this guidance that still remain in effect. So the most recent memo just of a few months ago reaffirmed some basic residents’ rights. You’re in a facility, just like Gelila said, you’re not a prisoner, you retain all your rights, and amongst those rights are your right to vote in elections. And you also have just the same way if you were living at your own home, you can get assistance as you choose. You can ask someone to help you out, like a family member, for example. Next slide, please.
And then going on with the memo, it did make some mention that facilities, I think of course shouldn’t be taking advantage of their position by essentially manipulating the votes or voting on behalf of residents. They can assist the residents as the residents choose, but obviously can’t be taking advantage of their position to influence the votes that are cast. Next slide, please. And then some of us have noted that there have been some changes here from previous guidance. There’s some references to potentially improper actions taken in a nursing facility. They’re very shaky references and allegations. But I think the message that should shine through all this is that the core of the previous message from CMS remains and the law is the same. Residents have a right to vote and facilities and families should do what is necessary to allow them to vote as they choose. I know there’s been some good resources.
Consumer Voice has a resource, Long-Term Care Community Coalition has a resource, and Consumer Voice is also doing a webinar specifically focused on voting within the next week or two, I believe. So that’s I think the strong message here. The message that people should take from this is just as a practical matter, understanding that the election day is coming up soon, talking about early November, which is now less than two months away. The procedures are going to vary from state to state, but folks are going to want to register.
And to the extent that vote by mail is available in the state, folks should investigate that and take the steps that are necessary. In some states it’s virtually automatic, others less so. And in some states, vote by mail has to be specifically requested. And then a month or six weeks from now, then folks need to take the steps to carry it out. And if voting is done by mail to take the steps necessary to cast their ballots in that way, or if folks prefer to go to the election centers either before election day, depending on the state or on election day themselves, that family and facilities can do what they can to facilitate that to actuate the resident’s request, not to unduly influence the vote, but to enable the resident to cast the vote that the resident wishes to cast. We can go on to the next slide, please. These are some of the resources that may be of value, the Justice in Aging Guide, 25 Common Nursing Home Problems & How to Solve Them.
A similar guide, dealing with Rights and Wrongs in Medicaid Funded Assisted Living. Gelila referred to the HCBS settings rule, and this is a practical guide to recognizing violations of the federal regs and how to address those. The third resource there is the issue brief that I mentioned earlier that Justice in Aging did about the need for informed consent protocols in nursing facilities and in other long-term care facilities as well. And then a reference to the National Consumer Voice for Quality Long-term Care, Voting Rights for Residents. And also, as I mentioned, Long-Term Care Community Coalition also has a guide to voting that they released just within the last week or so that would be of use to folks as well. So with that, I know we’ve addressed some of the questions online already, but there are probably some questions that remain and we’ll see which of those we can address in the remaining time.
Gelila Selassie: Thank you so much, Eric. I’ll give you a minute to save your breath since you did a lot of talking for the last few minutes and cover the first couple of questions about the care planning process. One question was asking about the documentation that might be required for care planning and the copies specifically that they should ask for. I briefly mentioned that there is a initial care plan that’s done within 48 hours of admissions that’s just addressing the immediate basic needs of the resident. Residents are entitled to copies of that. What’s really crucial is for the comprehensive care plan that’s done within a week later, that’s a lot more detailed, a lot more comprehensive. Residents and their representatives should be requesting copies of that and they should request copies if the facility doesn’t automatically provide it anytime it is amended. So that’s what we’re referring to there.
And then another question was asking about whether a comprehensive financial plan works in conjunction with a comprehensive residential care plan. And for the most part, the residential care plans are addressing what the resident’s actions and needs are within the facility. So there’s not likely going to be a lot of overlap there. To whatever finances the resident has is up to them. If they want to use their finances to buy things, to go out, to anything like that, of course they can. A facility should facilitate that to the extent that they can, but financial plans are really different from a sort of comprehensive care plan that’s addressing their day-to-day needs and their activities and things of that nature. A couple questions that came up with respect to informed consent is, one was the concern that a facility or family member might be concerned that a resident cannot give informed consent regarding certain medications, but the facility doesn’t care. Do you have any suggestions if a family member is concerned that the resident isn’t understanding what kind of medications or treatments that they’re consenting to?
Eric Carlson: Well, as I said, the facility has to get documentation. So if the issue is that the resident is “consenting” but without understanding what he or she is consenting to, if that’s the question, I think you can make that point and it gets a little … Whenever you’re talking about capacity in situations like that, it’s difficult because there’s no chemical test, blood draw that you can do that immediately establish whether somebody has capacity or not. It’s much more amorphous than that. So I think it’s difficult to answer that with real specificity. I think if that’s the problem and if the allegation is that the facility is getting consent from somebody who has no idea what they’re consenting to, then yeah, that should be raised and it’s a legitimate argument. Consent does … To be meaningful, the resident has to have the capacity of processing the information and giving a meaningful consent. But just again, the reason I’m going back and forth a little bit here is I know that these capacity questions are difficult in practice, and so there are some complexities there that aren’t easily answered on a webinar.
Gelila Selassie: Thanks, Eric. Similar to that, there was a question about people with dementia who, what recommendations to provide to keep up with their care plans as they’re in a position where their cognitive impairments increase over time due to their dementia, not just for people with dementia, but for any kind of condition or just part of aging process to the extent that people will probably, if they’re in a facility long-term, will need their care plans updated fairly regularly, whether it’s on a specific timeline or as their health status changes over time. And so the idea is to just sort of go back to the beginning, think comprehensively if they need more, for example, queuing, if they need more hands-on assistance, if they need more time with a speech therapist or cognitive support person, mental health therapist, whatever, all of those things can be documented up to date.
So it’s really important for somebody with something like dementia or who has diminished capacity that worsens over time to have that reevaluated, and again, with their representatives or guardians included. But it’s really recommended that anybody, regardless of their diagnoses, to be in a position to just regularly evaluate if their care plan is meeting where their health status is at the current moment.
Eric Carlson: And I’ll just add that you want to accommodate people as much as possible. You don’t want to be in the position say, “No, this resident can’t contribute here,” because he or she obviously can, the ability to do so may vary, but particularly … You just have to make the effort to work with people and listen to them as best as possible to make sure that care plans address what they want.
Gelila Selassie: Yeah. And then another question, a little bit more specific was asking what can be done with residents’ rights are not being followed by the facility they’re in. I’m going to put a big plug for Eric’s 25 common nursing home problems because it does address many of these situations we talked about today and many others with specific recommendations for appealing, for documenting, for reaching out to ombudsman, for other resources like that, and some steps that can be taken to stand up for residents’ rights.
Eric Carlson: Yeah, you can’t just push a button and make it happen. That’s the difficulty, and sometimes you can. Sometimes you just do something and it works and there you go. But I think it is a matter of continued pressure and working with staff and just like Gelila said, working with the ombudsman, resident or family council, making complaints to this survey agency. There’s litigation in some cases, but people shouldn’t underestimate … They shouldn’t underestimate their power. They shouldn’t even underestimate their power of not going away. You just don’t give up. I know it’s easier to say that than it is to do it, but you shouldn’t underestimate your ability to influence what happens just by not giving up and collaborating with people and taking it up the ladder as necessary.
Gelila Selassie: Yep. Thank you, Eric. And the 25 common nursing problems and all these other resources are in the slides that will be shared out after the webinar and was also just posted to the chat for easy reference. And then a question was asked if somebody has to give informed consent or be informed anytime they have changes in their medications.
Eric Carlson: Yeah, yeah. Yes, absolutely. Any change needs consent.
Gelila Selassie: Perfect. And then one question that I think we’ll probably end with is, “What happens if a resident has decision-making capacity but doesn’t understand their care plan or isn’t aware of the decisions being made about their care plans?” This is one of those all too common wrongs that we see a lot is when they’re not understanding what’s happening. Either it’s being rushed, the language that they’re using isn’t very accommodating, they don’t have somebody there to help them. And so in this case, we really recommend going through that step-by-step process, listing out everything that they need, making sure as long as it takes, those care planning conferences are being done in a way that the resident can understand if there needs to be multiple, so be it.
And then just making sure that it’s made in a way that the resident is aware of. If a resident needs a sort of top sheet summary to go along with the care plan, then so be it. But it’s really important that a resident be made aware of what their care plan is and a variety of ways to do that. There’s no one size fits all for their care plans. With that, I think that is it for today. Thank you all so much for joining us. Please be on the lookout for the slides and other resources and for additional Justice in Aging trainings and materials in the future. Thank you so much.
