Daily life is fraught with subtle dangers. There are risks associated with a trip to the grocery store, a walk in the park, or even a relaxing bath. Despite these risks, most people continue to buy groceries, bathe, and walk outdoors. They accept the idea that accidents happen, but they think it is more important to live fulfilling, happy lives.

 

This attitude generally doesn’t change just because someone enters a long term care facility; yet ensuring safety sometimes overshadows quality of life. However, with the evolution of person-centered care, more facilities—as well as family members and policymakers—are beginning to see risk as part of life and giving more weight to resident choices and autonomy.

The risk-versus-choice seesaw is tipping toward giving residents more say in what they want. As Judah Ronch, PhD, professor of practice, professor, and dean at the Erickson School at the University of Maryland Baltimore County, says residents have the “right to folly”—to make the same bad or unpopular decisions that any adult has the right to make.

There are many factors driving the move toward making choice a higher priority. The Centers for Medicare & Medicaid Services (CMS) has led the way on many facets of this movement.

For example, Colorado-based author, consultant, and former surveyor Carmen Bowman says CMS “came out with additional interpretive guidance on f-tags regarding choice and other issues. At the same time, the MDS [minimum data set] 3.0 is making us ask questions about choice.”

CMS also has implemented the Quality Indicator Survey (QIS), a computer-assisted long term care survey process that is being phased in by region and state. The QIS was designed to improve consistency and accuracy in identifying quality-of-care and quality-of-life issues. It is a more interactive survey that enables feedback for surveyors and managers alike. It also provides facilities with tools for continuous improvement and focuses survey resources on those facilities that have the most quality concerns.

Despite the growing emphasis on prioritizing choice, there is still some resistance. As Eden Mentor and physician Al Power, MD, FACP, says, “One underlying issue is ageism in society—the idea that older people need to be looked after. Even in nursing homes, we have a tendency to tell people what they should and shouldn’t do. It’s a very difficult environment in which to be empowered.” If there is any question that residents have the right to choice, Power says, they need only look in the regulations, or so it would seem.

F-tag 151 “Exercise of Rights” states that the “resident has the right to exercise his or her rights as a resident of the facility and as a citizen or resident of the United States.” Power says, “This is very basic and simple.” At the same time, he notes, it is not always interpreted the same way by surveyors. He says, “Surveyors take different approaches to the application of standards, and that is where we get into conflict.”

The key to juggling risk management in choice is risk negotiation, says Power. “We tend to take an all-or-nothing approach,” he says. “We all face risk every day. It is a part of life. You can’t completely eliminate risk, but you can minimize it and create a balance.” The best way to find the balance is to communicate and listen, he says.

“We have to fight the tendency to insert our own values for someone else and instead listen to and understand their judgment. When we count on substituted judgment, we often miss the boat.”

To understand what residents want, Power says, “We really have to put the focus on the individuals, their life experiences, and what they want out of life. We need to ask them about what they want to do, how it supports their health and well-being, and what the ability to do these things means to them.”

“We need to explain the risks and ask if the activity is worth the risk to them,” he says. “Then we need to honor the person’s wishes. Even it it’s not what we would do, we have to honor their choice and mobilize our resources to support it in a way that maximizes the benefits and minimizes the risks.”

Kallander shares a story of successful negotiated risk. A resident loved Pringles potato chips and would eat them at every meal. “The dietitian was beside herself and insisted that he shouldn’t have them. We met with the resident’s daughter and told her about the dietitian’s recommendations and concerns. His daughter says that this was his favorite food, and she was adamant that he should be able have these chips.”

After some discussion, the facility and the daughter agreed that the resident would continue to get the chips, but the physician would monitor him and let them know if there was a problem.

It’s been said many times, but it needs to be said again: document, document, document. However, while most agree that detailed documentation is good protection, it may not be infallible. As Troxel says, “My attorney friends tell me there is almost no document that really lessens the risk.” While he encourages documentation, he suggests keeping it clear and simple.

“Overdocumentation could be as troublesome as lack of documentation. Note what you’re doing, why you’re doing what you’re doing, and a summary of the family and resident communication,” he says. He also suggests composing a letter that lists the pros and cons of, for example, daily walks, and that says the family authorizes this behavior. “Keep it to one page, and have the family sign it,” he says.

“Even if it doesn’t protect you legally, it puts you in a better position with the family,” he says. “Everything I understand about risk reduction is that good relationships and communication are the best defense.”

When Kallander negotiates risk with a resident or family, she has them complete and sign a form that details their discussion and what they agreed to do. “It’s not perfect, but it generates conversations and makes staff feel safer,” she says.

Power is working on what he calls a “radical” idea—eliminating traditional policies and procedures. He explains, “The problem is that most P&Ps have several qualities that make them restrictive. They tend to be black and white, with no room for nuances. They often are based on worst-case scenarios. Because they try so hard to be fair and equal, they often are unfair and unequal.

“We have moved to principles and guidelines instead of P&Ps, where you have things based on values rather than rules,” he says.

For legal purposes, says Howard Sollins, a Baltimore-based health lawyer, “the strength is on who is making the decision and if he or she is authorized to make that decision, how you documented the information provided, and how you determined and gained informed consent.”

Perhaps most challenging are the situations where a resident’s choice may be so problematic that it could jeopardize the person’s ability to receive care.

“We’ve worked with facilities to put in place a process for progressively setting some parameters for these kinds of behaviors,” Sollins says. Typically, these are coupled with documented efforts to educate the residents and identify risks and agreements about expected behaviors.

Sollins stresses the value of facility ethics committees and resident advisory committees to address difficult situations. “People can come in and discuss a particular situation. These are extremely valuable in helping everyone get comfortable with difficult choices,” he says.

One of the most challenging risk-versus-choice situations involves residents with Alzheimer’s disease or other dementias. However, Troxel believes that there’s been progress. He says, “The contemporary view is that people with dementia are like the rest of us. There are more outings—unconventional things such as going to baseball games, museums, and restaurants—and these involve greater risk.” Not only are families increasingly supporting these types of events, they are encouraging them, Troxel says. “Families almost universally want mom and dad to enjoy life and have fun.”

At the same time, providers are effectively communicating the benefits of choice for residents with dementia.

“Families are starting to understand that falls can happen anywhere and that elopements can happen in even the best places. We’re communicating that when mom and dad have exercise and activities, their wellness, happiness, and mood go up, and that lowers the risk of falls and their desire to leave,” says Troxel. He adds, “Having good communication and a strong activities program is the best defense.”

Sometimes facilities have to use their own judgment. For example, Kallander spoke of her community’s decision to include a rose garden on its grounds.

“We had people say we were foolish, that residents would fall or climb in the roses and get scratched or cut. However, my research told me that residents have certain skills and abilities that don’t leave them just because they have cognitive impairment. They know not to jump in the bushes,” she says.

So facility leaders agreed to take a “reasonable risk.” Kallander says, “We decided to monitor the situation carefully, to file any incident reports, and trend accidents related to the rose bushes.” The result? Never once in three years was there a problem. Kallander concludes, “Sometimes you have to be a little brave about trying things. Hovering over and coddling people isn’t the way our residents want to live their lives.”

“My experience has been that most of the time people wander because the opportunity presented itself. They walk out with a family member. The UPS man holds the door open for a resident. They’re walking and see an open door,” says Cynthia Lilly, MSW, National Memory Care and Dementia Program director, Atria Senior Living, Louisville, Ky. Only a few residents actually plan their escape.

She says, “One resident with Lewy Body dementia knew when the therapy dog went out, and he would sneak out with it.” While the facility is responsible for preventing these elopements—whether they are impromptu or planned, they can do it without restricting residents’ movements.

As Lilly says, “Locks need to work, windows need to close, and doors need to have alarms. Staff need to make sure that these things are working. However, the best way to prevent elopements is to keep people engaged and give them a reason not to be hanging out by the door.”

Staff also can use common sense to prevent wandering while enabling residents the freedom to move around at will. Lilly says, “A lot of times, these elopements happen in the later afternoon when the sun is going down and there are shift changes. Residents can read the body language of staff and know that something is going on. They get restless, and they can wander. So it is important to keep them occupied during these times.”

Many attempts at wandering happen during the first 48 hours after someone enters the facility, Lilly says, so staff need to take this time to get to know new residents and make them feel safe and comfortable.

“During the first few days, you have to do regular checks on the new resident. Make sure they are okay. Are they comfortable? Are there familiar things in their room? Do they know where the bathroom is?” Lilly trains staff to call new residents by name every time they see them. “It makes them feel safe and more at home,” she says.

Family members can help by sharing information about the resident’s patterns, habits, and routines. For example, she says, “One resident was very restless and wasn’t adjusting well to her new surroundings. She wanted to leave. We discovered from her family that she loved tea, so we gave her the job as hostess for an afternoon tea party. She went from exhibiting difficult behaviors to being someone with a sense of purpose.

“Let family members and other visitors know that when they leave the facility, they need to make sure no one follows them. They may need to take the resident by the hand and turn him or her over to a staff member,” she says.

Fall prevention is one area where risk management often takes precedent over choice. “There is this false idea that if people go into a nursing home, they won’t ever fall. While we can reduce the chance that someone will fall, falls still happen. We have to create an environment that keeps people safe and honors choice,” says Power.

Part of the problem is confusion about how to interpret the regs. As Bowman says, “Tag 323 has one sentence that says in the end the facility is responsible for preventing falls. In some states, surveyors hang onto that sentence. However, there are other parts of the tag that say things such as, ‘not all falls can be prevented.’ Many surveyors don’t pay enough attention to this concept. Instead, they focus on the idea that the facility clearly didn’t do something that could have prevented the fall.”

Unfortunately, Bowman notes, this can causes staff to focus more on fall prevention and risk management than what the resident wants. It also can penalize good facilities. She says, “If a facility has a good system and someone still falls, they may still get cited even it had a good practice in place.

“State by state it varies when surveyors are in your building,” Bowman says. “I’ve had surveyors say that they go after safety issues harder because they are black-and-white issues, whereas quality-of-life issues are much harder because they are not so clear cut.” She adds, “It’s easier to focus on what could have been done to prevent accidents rather than on what residents really want. The resident’s voice is still missing.”

When the resident has a voice, the results can be surprising. Power relates a story about a nursing facility resident in Ohio. “He was weak and unsteady on his feet. He would fall often, and they wanted to restrain him. He had meetings with staff and said that he would rather die. So they put it in his care plan, and he continued to move about on his own. He fell dozens of times in a few months, but eventually he was able to ambulate independently without falls.”

Troxel suggests documenting why someone is allowed to participate in a potentially risky ambulation. For example, Mr. Jones worked in a grocery store all of his life, and he really enjoys trips to the local supermarket. Troxel says, “That way, if dad falls, the family is reminded of why he was there, what he got out of the walks, and how they benefited him.”

Most facilities stress their successful falls prevention programs and fall and injury rates to families on admission. While this makes sense, it also can encourage unrealistic expectations about the facility’s ability to prevent falls. As Lilly says, “Residents fall more as they get older. But we also have to keep them up and moving as much as possible.”

This often calls for compromise. For example, she relates an incident where a family member wanted to purchase a “Lap Buddy” to confine a resident. “We proposed that we instead get him into physical therapy and help him build his strength. We also gave them information about the pros and cons of the Lap Buddy so that they could make an informed decision,” she says. However, she admits that it may be futile to talk to the family when emotions are high.

“The intellect will accept only what the emotions allow. Sometimes when the family is upset, we really can’t educate them at that time. We have to wait for the right moment and plant little seeds,” she says.

Younger residents, a growing segment of the long term care population, are less likely than their older counterparts to wait to make their own choices. “Younger people may have a different idea of what they want to do,” says Power. These individuals often want to leave the facility and spend time with their friends and families. This often involves leaving the facility or pursuing unhealthy activities such as drinking alcohol, smoking or using drugs, or eating junk food.

While facilities don’t have to like these choices, they have to respect them. As Robert Gibson, PhD, JD, senior clinical psychologist, Edgemoor DPSNF, Santee, Calif., says, “Some of these people made bad choices before they entered the facility, and that behavior is likely to continue. However, we are in a position to protect them and mitigate risks to some degree.”

Gibson’s facility focuses on ongoing assessments of residents’ decision-making capacity to make sure they are capable of making choices—good or bad. He says, “If they can articulate the reasons they want to do what they want to do, and they aren’t impaired by depression, suicidal thoughts, etc., they generally are able make the decision they choose to make.” He stresses the need to revisit these assessments over time.

“If a situation involves a more complex decision, the resident will have to demonstrate greater capacity to make that decision. If they have that capacity, document it. Then work with the resident to mitigate the risk.”

Facilities that are still uncomfortable or unsure about how to balance risk management and choice should make this issue a priority. The growing baby boomer population in long term care likely will create a new generation of residents who expect choice. “Baby boomers won’t tolerate being told what to do. They will demand the ability to take risks,” says Power. Ronch adds, “Boomers grew up with a sense of entitlement. Any facilities that don’t prepare for these individuals are in for a rude awakening. They need to get ready for boomers and understand what is in the regs regarding choice and risk.”