#1 Start with Dessert

Aging with Altitude

Older adults in long term care may not realize they have rights from ensuring basic personal dignities are respected to choices that frustrate and challenge providers. How do we weigh self-determination and safety? What's best for the individual vs the group? Ombudsmen step in and offer insight, direction, education and support for both residents and facilities.

Aging with Altitude is recorded in the Pikes Peak region with a focus on topics of aging interest across the country. We talk about both the everyday and novel needs and approaches to age with altitude whether you’re in Ft. Lauderdale, Florida or Leadville, Colorado. The Pikes Peak Area Agency on Aging is the producer. Learn more at Pikes Peak Area Agency on Aging.

Transcript:

You're listening to Studio 809. This is what community sounds like.

Michaela Nichols:

Hello, and thank you for listening to Aging with Altitude, a podcast series about how we rise above the day-to-day issues that surround aging. This series is sponsored by the Pikes Peak Area Agency on Aging. Today's episode is "Start with Dessert" about long-term care. My name is Michaela Nichols and I'm here with Scott Bartlett. Scott is currently an ombudsman at the Pikes Peak Area Agency on Aging Ombudsman Program. He has been with the agency and working as an advocate for older adults in the community for fourteen years. He's been nationally recognized for his work in long-term care services and support. So Scott, can you tell us a little bit about what you do in your role as an ombudsman?

Scott Bartlett:

Sure. So what an ombudsman is, we are advocates for residents of long-term care facilities. So when I say long-term care, what that means is state-licensed assisted living and nursing homes. The majority of the residents there are older adults, but there are quite a few young people with mental illness and traumatic brain injuries or disabilities that also reside in long-term care facilities. So what we do is help to increase the quality of life for people in long-term care. We are an intermediary or an advocate when there are problems in care, or rights, or just general. Any areas of conflict, everything from the coffee might be cold to assisting with allegations of abuse and neglect. And so really, just to sum it up in a few words, we are a voice for people that often don't feel like they have a voice. Sometimes this is also for family members. But also we are there to align with the facilities, because we need them to be on board with us and vice versa, to make sure that people have a good quality of life, and they retain their civil rights while in care. And so we do a lot of education and consultation with facilities to help them be better at what they do.

Michaela Nichols:

Can you tell us about some of the most rewarding parts of the position?

Scott Bartlett:

Yes. You know, there are a few cases that come to mind that I think we feel good about. Often, those cases are about either protecting somebody from abuse and neglect or restoring their civil liberties. There was a case where a resident disclosed to us some pretty severe abuse allegations. Ultimately, that place ended up, because of this, having their license suspended and then later terminated because the abuse was substantiated. But the resident that first came forward after she moved out of the home, and was free from this abuse and neglect. Her family took her on kind of a tour of the western states of the United States and sent us postcards and thanked us for allowing the end of her life to be happy and that we had assisted her to be free from this oppressive environment but she was living in. We feel good about those kinds of cases where the resident is satisfied with the results and feels that we help to make their life better. Those are the best cases.

Michaela Nichols:

That's a sweet story. So what are some of the most difficult issues you've had to deal with?

Scott Bartlett:

Difficult issues often are around abuse and neglect is always difficult. You know, personally for the ombudsman, but also professionally, it sometimes becomes frustrating. Other issues might be legal ones around surrogate decision-making. So when I say surrogate decision-making, I'm talking about powers of attorney or guardianship. Often when there's conflict in those areas we see a power of attorney or a guardian exercising their authority in a way that doesn't always promote quality of life. I always talk about how the issues that we see often come down to when we're talking about rights, about what is the proper balance between autonomy and the right to self-determination and safety. Often we see decision-makers with good intent sometimes. It's not always just about power and control, it's about trying to keep the person safe. But there isn't that consideration that not allowing somebody to do, like, have dessert when they're diabetic, that there's harm in that too, by disallowing a person a choice. That's oversimplifying some of the issues that we see. But it's difficult to talk to guardians and powers attorneys and say, "Listen, you, there's dignity in allowing some risk here." And then, you know, there are issues with the power of attorney that are misunderstood. In Colorado, Power of Attorney cannot, well, they have to work alongside the person the power of attorney has sworn. And they're not allowed to override the decisions of the person, they can make decisions alongside them, or make decisions when they can't. But when the individual can't do to whatever reason, but what they're not allowed to do is go against the wishes of the principal, or who the power of attorney is for. So we do a lot of education around there. And sometimes that's difficult. And I think one of the greatest challenges is where, because we're the voice, we have to go with the implied wishes, the stated wishes, the expressed wishes of the person. And sometimes they're asking to assume the risk that, even as an ombudsman office we might be uncomfortable with, but it's not our position to, if we're going to be the voice for the person, then we are not to put our own values and our own thoughts on what the person should do. So there are times that maybe we advocate for things that from the outside look unreasonable. But again, it comes back to we're the voice for the person, we're not a family member, we're not a decision-maker, we're not case management. We might advise the person on if they make this choice, here's the risk. But ultimately, if they want us to advocate for things like leaving the nursing home and returning back to their community home when it's observably unsafe, our mission is to still advocate for that because it is their right.

Michaela Nichols:

So, do you have an example of a time when you had to separate your values from that person and the decisions that you had to make or advocate for them?

Scott Bartlett:

Yeah, I think what I just said often becomes difficult, because we see people that come from community settings and enter long-term care for various reasons. Usually, because there's been something unsafe in the home that has led to a hospitalization, and then ultimately, they end up in assisted living or a long-term care facility. And you often see residents of long term care that are resistant to care, and were resistant to allowing supports in the home to help them be safe and independent in the home, and then they'll want to return back to the very situation that created them going to long term care in the first place. You know, I always feel uncomfortable when advocating for someone to be unsafe. Not always but in some of the cases, I feel uncomfortable about the safety of the person but again, I think the way that balances out in my mind is that we're advocating for their right to assume risk. And the way that I think we try and balance that out is again making sure that that person is getting all the information that they need to make a choice. You know I will be very honest with them that if you don't allow, you know, home health to come in and assist you and help keep you independent as possible that you might come back to long-term care again. But, you know, again, going back to we're the voice. If that person still wishes to deny any help, then that's what we have to do.

Michaela Nichols:

So what are some of the most frequent scenarios that you come across? I don't know if you've already touched on some of them or if you have any other ones?

Scott Bartlett:

Well, big ones are always around things like answering call lights. Many facilities, not all of them in the assisted living world, but most of them in nursing homes, have a system where a button can be pushed when a person needs assistance. Then the staff knows to come to the room and ask what help is needed and then provide that help. We get frequent complaints that call lights aren't answered, or they're not answered on time. You know, we may see call responses being 20 or 30 minutes, sometimes an hour or more. And that's very difficult for a person who might need assistance to the bathroom. And then, because the call light wasn't answered timely, they may soil themselves. And that becomes a dignity issue also. So that's a very common complaint often stems from staffing ratios, maybe there's not enough staff there. Sometimes the call lights are broken. Sometimes residents can't reach the call lights. So they're placed in bed, but the call light may not be within their reach. So call light issues are frequent. Other things are around personal need's money. So residents are afforded some personal need's money to spend on things of their choosing. Often they feel like they need more, or there's an issue accessing those funds. That's another very common one. Also, complaints about dietary. So, dining services, which are sometimes the most difficult to solve, because you're coming from preference many times. You know, someone says, "well, the chicken is too spicy." If you talk to the resident next door, they would say it was just fine. But again, we're the voice. And so we're going to, you know, advocate for that person and say, " Listen, this person says that the chickens too spicy or whatever." Dining complaints can be big, you know, cold food or not enough variety. But yeah, dining complaints, call lights, also medication being timely. Many residents have been on the same medications for years and years and know what medication they're to take, and at what time, and if it's 30 minutes late. They become very anxious, especially when it comes to pain medication. But I would say those are a majority of our complaints. And unfortunately, we do receive a lot of complaints about rights issues or abuse and neglect.

Michaela Nichols:

So I want to go on to a little bit about the editorial that I read about one of your first cases. It was about a facility resident with diabetes who was being denied dessert. And you mentioned it a little bit earlier. Do you want to explain more about that situation and how the person felt and how it went way beyond just getting dessert?

Scott Bartlett:

Yeah. So and that is a good one to talk about because it kind of hits on a couple things I've already touched on. So the situation was I received a call from a gentleman who lived in an assisted living facility. He wanted me to come out and see him and so I did. He told me that the issue was that he wanted chocolate cake, and he was being disallowed. And so I went and talked to the administration, the administration told me that he was diabetic and his daughter was power of attorney and that the power of attorney had instructed the facility not to allow him to have dessert. Now, this gentleman, from what he told me, just having a dessert after dinner was the norm. He wanted to uphold that norm. That was a part of his life that he wanted to maintain. And he told me, you know, "I'm a veteran, I fought the Japanese and the South Pacific, I'm not afraid of a little chocolate cake." And so the issue here, and going back to the administration that I explained, is that it's a power of attorney. She's exercising the power of attorney document in a way that it's not designed to be used for. She's overriding his decision to assume choice and risk. And, you know, going back to that, there's dignity with risk. Taking away the chocolate cake arguably could be more harmful to his social and psychological needs and quality of life than his blood sugar spiking a little bit after dinner. So what I did was I talked to the power of attorney and I talked to the facility about a plan. And that was to get them educated about what the true risk was, for having sweets when he's diabetic. And basically, what the nurse said is that "we'll track it, your blood sugars are probably going to spike, it'd be advisable, maybe to have half a piece of chocolate cake rather than a whole piece." And so, the end result of that was that he got his chocolate cake and because there was a consultation on the medical side, where we could figure out what the true risk was, and then a plan to watch his blood sugar's a little closer. The resident was totally happy with the result, I think that the facility and the power of attorney still had some reservations. Ultimately, you know, this man got his chocolate cake, and he was happy and it increased his quality of life. It was something that continued from his former life. I think what people don't understand is that this wasn't really about chocolate cake. Right? You know, this was about him wanting to maintain the quality of life, some normalcy from his former life. He wanted to exercise his right to risk. And he thought about it, of course, he went with the chocolate cake. And as far as I know, I never heard anything about it again, I don't think he had suffered any harm from having the chocolate cake. So, you know, that's a good one to talk about, it has these elements that we've already brought up.

Michaela Nichols:

So are there any misconceptions that people have when thinking about long-term care that you've come across in your work?

Scott Bartlett:

Yes.

Michaela Nichols:

So, the misconceptions are?

Scott Bartlett:

Well, you know, if you talk to people, and you ask them about long-term care, a lot of them feel that long-term care is a place that you go to die and that life stops. That's not necessarily true. I think, at one time, maybe it was. You know, many years ago. But through regulations and changes of standards of care in the long-term care industry, you're becoming more aware. Patients are their own advocates, and in allowing choice and independence as much as possible, I think we've seen changes there. But misconceptions are, again, that long-term care is a horrible place to be in. Granted, a lot of people that I talked to who are residents of long-term care facilities will say, "I'd rather be at home in my own place." But many of them will say, "you know it's okay. I understand I need this assistance." But, if they're offered these things that we're discussing, if they're offered the lanes of opportunity to make their own choices, such as being involved in their medical care, allowed to have relationships with people including intimate ones, they're allowed to exercise their rights just as they had in the community, they're usually okay. Again, they'd rather be at home. But it's not the place that I think people have in their minds where you don't have any more rights, you're isolated and stuck. And to some degree, that is true in some cases. For the most part, we want long-term care to be seen as part of the community and not that residents are excluded from the community and their rights.

Michaela Nichols:

In your fourteen years in the Springs, have you seen improvements in long-term care in general? I mean, I know you still deal with issues of abuse and neglect and things like that, but do you see more rights for people in long-term care than there were?

Scott Bartlett:

I do. Again, I think fourteen years is not very long in the scope of long-term care, that's just the course of my career. But even in that short time, I've seen a change in attitude about rights and assuming risk. Long-term care is is better informed and educated in promoting the rights of residents. I've seen shifts, they're both systemic, in understanding, but also in individual professionals, who maybe have heard from ombudsman or elsewhere, that these things matter. As far as supporting as much independence as possible, making people feel like they have the right to self-determination. There's a term in the industry that's widely used right now, about person-centeredness. So it used to be that your medical team made decisions for you, and you didn't have a whole lot of say, now, that's all changed towards, we are working for this person to make sure that they are safe, and they receive medical care, but also that their psychological and social needs are met at the same time. Those are just as important and for some individuals, it may be more important than addressing physical needs. So yes, I would say that I have seen an increase, at least in my observation of this region, in my fourteen years, of better understanding of what leads to better satisfaction for people that are living in long-term care.

Michaela Nichols:

So what kind of advice would you give to families and individuals looking into long-term care solutions?

Scott Bartlett:

Well, I deal with those calls frequently to my office. And you know, the first place I normally start is, if it's a family member asking "what does mom or dad want to do?" or an uncle, whatever the relationship is. Do they want to go to long-term care? You know, going back to that issue of who is the decision-maker legally? And, yeah, you know, the risk of addressing only the safety issues and not the social and psychological issues and potential for harm there. So, helping them to decide if long-term care is the right option. Because there's a spectrum of possibilities in between having nothing at home to entering a nursing home. So there are things like home health, you know, what services might be brought into the home. We can get closer to that proper balance of addressing safety and autonomy. And then we'll move into how to pay for long-term care because there's kind of a broad spectrum. I'll just kind of throw out general numbers. It's not exact but say assisted living may cost three to five thousand a month, sometimes more. Nursing homes, you're looking at seven to nine thousand a month. Few of us have that kind of money. It's probably not going to last very long. So talking about how to pay for long-term care, whether that is through private funds, or having to seek Medicaid to help pay for care. And then the next step would be to ask what is the right level of care? Does someone need assisted living versus a nursing home? So a lot of that is determined by how much assistance is needed. And then making choices about what is the right fit for that person? Does facility size matter? Does location matter? Is a person a smoker, because some facilities don't allow smoking at all. And trying to make a match. Going back to if the right fit is found, the better the odds are that the person will be more satisfied with moving into a long-term care facility. And then, we usually try to help them narrow down to three or four facilities to check into, and then they go out and do it.

Michaela Nichols:

Okay, yeah. Do you have anything else you want to share?

Scott Bartlett:

Yeah. So it may be important to understand when to call an ombudsman. So it's appropriate, and I suggest that you call an ombudsman, in a couple different cases. So one is, a lot of people don't understand how to access long-term care. You know, we talked about kind of the scope when family members are considering long-term care and what that looks like in my office. I would encourage people to go out and get information from the ombudsman's office. Also looking at facility performance history. So they're regulated by the state, and they are assessed on a pretty regular basis as to their compliance with regulations. Some are better than others. But it's important for people to understand what that history has been. Most people wouldn't understand where to find that information. So an ombudsman can help with that. So again, in seeking long-term care, and a lot of people don't know how to access the correct information. So it would be advisable to contact an ombudsman on how to do that. Other areas are questions about regulations, say you're a resident in a long-term care facility, or you have a loved one in a long-term care facility, and you are confused about a facility policy or standard of care and want to know if what is happening. Such as is it compliant with regulations. We can answer questions there and help give people the knowledge level to be empowered to solve their own problems sometimes. It is always advisable to contact an ombudsman when a problem persists. Also, when the resident or family member has gone to the administration and feels that they have exhausted all their ability to work the internal grievance policy and they still feel like the problem exists or they weren't heard. Contacting an ombudsman to assist in moving that forward is always advisable. Certainly around issues of abuse and neglect. Most of those probably should go to law enforcement if it's criminal, but it's not out of bounds to contact an ombudsman and discuss the case and get some advisement there. And maybe even, you know, opening a case with the ombudsman office because those are the ones that we really want to be involved in because they can be so detrimental to people. I always say this too; I always get all the bad stuff. But, you know, if people really feel good about the facility, then I would like to hear that too. I don't get a lot of that. I like to know the facilities that are doing well. And so, really, it comes down to if you have questions about long-term care, we're a safe place to come to discuss those and provide some education to help people wrap their head around whatever questions that they have. Hopefully, empower them through gaining more knowledge. But ultimately, we're just here to assist and help improve the lives of people living in long-term care.

Michaela Nichols:

Thank you so much for joining me on this episode of the Aging with Altitude Podcast. I enjoyed being able to learn more about your role as an ombudsman, and I hope the audience did too. For those interested in learning more about the program, you can visit PPAG.org or call 719-471-2096.