#1 Start with Dessert

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...