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Research project helps reduce need for medication at personal care home

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Every week, a team of nurses, health-care aides and other staff at Middlechurch Home of Winnipeg get together for a 20-minute discussion about resident care.

It's a brainstorming session for employees at the personal care home just off Main Street, north of the Perimeter Highway. While just a few minutes of their day, it is a chance for all of them - including housekeeping and recreation staff - to come up with creative ways to provide care to a handful of residents with complex needs.

Most of these residents suffer from dementia or Alzheimer's disease, and they all have histories of exhibiting what long-term care providers refer to as "challenging behaviours." They may have a tendency to wander off, almost daily, or they may call out repeatedly for hours pleading to know where they are and why they can't go home. They're often confused, disoriented and anxious. Some of these residents may even act aggressively, putting themselves, staff and other residents at risk.

At any huddle, during any given week, a housekeeper might lead the discussion, talking about her experience with one resident, a retired teacher known for pacing the halls all day long and occasionally trying to wander away from the home.

"Maybe we could give her something to correct, like she is still a teacher at school?" an aide might say. "That might give her a sense of direction and provide her with something to do."

They might brainstorm about her care a little more, eventually coming up with a plan that involves providing her with school materials - perhaps some old math tests that she can work on during the day. Then on to the next step: They act upon the plan, and her behaviour over the coming week is "mapped." Her mood, her activities, and most importantly, her challenging behaviours are all noted and recorded in her care file.

More often than not during a huddle, the team will discuss a few residents. One nurse might provide an update on the progress of a resident who was a mechanic for 40 years. He might have been given a tool kit, modified so he may harmlessly tinker with it. It's a small and easy step, but the benefit for both him and staff is tangible. He's occupied for a few hours each day, reducing his challenging behaviours. And just as important, it helps reduce the time staff would spend dealing with those behaviours.

This approach to dealing with these residents represents a major change at Middlechurch. Less than a year ago, all of the residents discussed in the weekly huddles were taking antipsychotic medication to reduce the incidence of their challenging behaviours. Thanks to the huddles, they no longer have to take these drugs. The result is a more efficient use of resources and, more importantly, an improvement in the quality of life for the residents of the home. This change did not come about by accident. Rather, it is the end result of a research project undertaken by two Winnipeg Health Region staff members to show how data could be used to help improve patient care in personal care homes. As such, it is a prime example of how the Region is using innovation to improve the quality of care delivered in the community, whether in its own facilities or via partners like Middlechurch Home.

The research project was conceived and developed by Joe Puchniak and Cynthia Sinclair as part of an educational fellowship for health-care managers called Executive Training for Research Application, or EXTRA. Puchniak is a social worker by training and Manager of RAI/MDS and Decision Support for the Region's Personal Care Home Program. Sinclair is a registered nurse and Manager of Initiatives for the Personal Care Home Program (currently on secondment as Director of Care at Fred Douglas Lodge Personal Care Home).

Funded by Health Canada and administered by the Canadian Health Services Research Foundation, EXTRA is intended to promote the use of evidencebased managerial practices in health care. Twenty-four fellows from across Canada are accepted into the program every year. This two-year program gives health-system managers across Canada the skills to better use research and information in their daily work as a way to increase evidence-based decision-making in the health-care system. Similar to pursuing a graduate degree at university, fellows focus their studies on an intervention project in which evidencebased practices and management can be applied to improve care in the real world.

In developing their proposal for EXTRA, Puchniak and Sinclair decided to focus on ways to enhance the delivery of care in personal care homes. More precisely, they wanted to know if data compiled on personal care home residents could shed light on the use of antipsychotic medication for residents and whether it could be reduced.

Several years ago, health-care providers began collecting data about personal care home residents and residents receiving extended care at home or in the community. The data, known as a Minimum Data Set, (MDS) or Resident Assessment Instrument (RAI) is compiled four times a year to assess the health needs of individuals.

"It's a full assessment that covers the physical side of things, such as how people dress themselves and eat, all the way to the psychosocial side, such as how they interact with others in the facility, cognitive patterns, such as short and long-term memory, and medications," says Puchniak.

A standard of health information gathering used in many developed nations around the world, Puchniak and Sinclair knew the MDS system had the potential to help front-line staff members and management improve care for residents while ensuring resources are used efficiently. The EXTRA fellowship gave them a chance to demonstrate its value.

Sinclair says the duo focused on the use of antipsychotic medication because it is an important area of care. "We wanted to choose an indicator for which we had good reliable data, and we wanted to choose one that had the potential for improvement."

Antipsychotic medication is used in personal care homes across Canada and in most of the developed world to help manage challenging behaviours of long-term care residents who suffer from dementia. Nonetheless, research suggests that first and second generations of the drugs - such as risperidone or quetiapine - in many situations do not provide much benefit, largely because they were not specifically designed to treat dementia. "This is a class of medications originally created for psychotic conditions, like schizophrenia and other mental illness with symptoms of delusions and hallucinations," Puchniak says.

In schizophrenia, the drugs are supposed to work by reducing anxiety, hallucinations, delusions and other anti-social behaviour. But these medications pose problems when used for dementia patients. They may not, in fact, reduce negative behaviours, and in larger doses may have a sedating effect, thereby virtually reducing all behaviour - good and bad. And then there are the potential side-effects. "We know there are many significant negative side-effects that may result from antipsychotic medication: including an increased risk for stroke, heart attack and death in elderly patients," says Sinclair, adding that other lesser and more common side-effects, including Parkinsonian-like symptoms (tremors), listlessness, sleep difficulties, and loss of appetite or weight gain, could potentially occur. Having said this, there is still a small percentage of the dementia population that may benefit from these drugs, especially for those exhibiting extreme aggression and anxiety. "The goal is not to reduce antipsychotic usage in PCHs to zero, but to use this method of therapy judiciously, with caution, and where appropriate," says Sinclair.

Winnipeg Health Region promotes that antipsychotic medication should be used only as a last resort to alleviate some of the symptoms that result from dementia. But defining what constitutes this can be tricky. In the course of their research, Puchniak and Sinclair found that the use of antipsychotic drugs was not evenly distributed in personal care homes across the Region.

"We looked at the data and found usage at about a 30 per cent average across the Region, and when you looked at some of the homes that made up that average, there is wide diversity," Puchniak says. "Some care homes in the city used the medication for only a handful of residents - less than 20 per cent of residents at some homes, and even less than 10 per cent in others. Some were in excess of 40 per cent, and one was as low as six per cent," he says. "Given that the population is pretty much the same in every personal care home when you look at the demographics, there (appeared to be) an opportunity here for improvement."

Using the MDS data, Puchniak and Sinclair were able to determine that different levels of usage among the care homes had little do with a variance in the number of residents with dementia from one facility to the next. "You see this huge variance even though when we look at the populations, generally speaking they are very similar across the Region," Puchniak says.

Interestingly, the data also indicated a potential solution to the problem. It showed that facilities with lower antipsychotic medication use were often those using a care model for residents with dementia, known as P.I.E.C.E.S.

The program, originally developed in Ontario, stands for Physical, Intellectual, Emotional, Capabilities, Environment and Social. "It's a way of assessing your residents against those criteria to try to understand the behaviour that you're seeing," says Sinclair.

Under the P.I.E.C.E.S model, health-care providers caring for residents with dementia are empowered to develop creative methods that address each resident's needs and behaviours. Medication is used only as a last resort. In essence, the approach encourages care providers to look at the bigger picture of patients' histories - not just their health history, but also their personal histories. It also encourages them to take into account what the residents did for a living, their family life and many other seemingly intangible bits of information that make up who they used to be and who they are today.

"It's looking at the whole situation, figuring out why they are displaying these behavioural symptoms and asking whether there is anything we can do to address them," Puchniak says. "In many cases, if we think through it, there are ways of providing them with what they need. Maybe it's things that they're asking for, but there is a communication deficit and they're not able to ask directly, and maybe we can provide them with care without looking at medication first."

So now Puchniak and Sinclair knew which homes had potential problems, and they also knew that there was a way they could help them. But that was only half the battle. The focus of their intervention project was to use MDS data to effect change in the real world, so the next step was to work with a personal care home. "We invited personal care homes to volunteer to participate, with the criteria being that you had to have a usage rate that was higher than the average of 30 per cent," Sinclair says. "We had to have a management group that was willing to work with us and a physician group that was also supportive."

Middlechurch fit the description to a tee.

Of the 197 residents at the home, 79 of them were taking antipsychotic medications. At 40 per cent usage among its residents, Middlechurch had one of the highest levels of antipsychotic medication usage in the Region. Equally important, however, was that the home's management and staff were open to participating in the MDS research project. "Middlechurch came to the table and said, 'We'd love to partner with you,'" Sinclair says.

The home had been collecting MDS data for a few years and realized that the usage of antipsychotics was high. The EXTRA project allowed for an opportunity to review practices and look for opportunities to improve care.

"The carrot that they dangled in front of us was that they were going to lead our staff through a mini-training session for P.I.E.C.E.S," says Betty Bender, Director of Nursing Administration at Middlechurch. "That was really what intrigued me because providing that training is invaluable."

Puchniak and Sinclair, along with Region Personal Care Home Program colleagues, including the regional educator and the clinical nurse specialists, developed a condensed version of the P.I.E.C.E.S. training for the entire staff - from nurses to housekeeping. "Our approach was to take that P.I.E.C.E.S. education and change it a little bit so that it could be applicable to any level of staff in the home," Sinclair says. It can be done quickly without much disruption to the workflow at the home. "In partnership with Joyce Klassen from the Alzheimer Society of Manitoba, we delivered this education, broken out into six modules, that were an hour or less in length. We piece-mealed it to them."

After meeting with management last January and getting the go-ahead, Puchniak and Sinclair started the hour-long sessions in late February.

By the end of March, almost 100 per cent of full-time staff had taken the course and more than 50 per cent of the entire staff had taken the training. "We got excellent representation from everybody at Middlechurch," she says. "It wasn't 100 per cent because that's often difficult to do in a home, but they did exceedingly well."

The next step was implementing the P.I.E.C.E.S. practices into care for residents at the home. First, Sinclair and Puchniak met with management, physicians and nurses to identify patients who were good candidates to be slowly taken off the medication. "Together we would choose one or two residents who would be likely candidates to come off their antipsychotic medications over time, and we started to apply the P.I.E.C.E.S. model of thinking and care," Sinclair says.

That brings the story back to those "huddles." These mini-meetings started last April, and were held at a time convenient for staff during a shift. At first, Puchniak and Sinclair helped lead them. To start, they would map the residents' behaviour to provide a baseline from which they could measure future behaviour as the study progressed. This included using the existing MDS data that documented their behaviours and medication usage. "Then we created a plan, using the education that they received to provide care that was different than they had been used to delivering - in other words, 'outside the box' and creative thinking," Sinclair says.

Implementing P.I.E.C.E.S. is challenging because there are many moving parts that have to be co-ordinated. A comprehensive care model, P.I.E.C.E.S. reveals its effectiveness once care providers can connect the dots between recorded incidents of behaviour over a period of time. Eventually, a pattern of behaviour emerges that provides understanding of its underlying causes. Once revealed, the solutions can often be relatively simple.

In some cases, the change in care has been as basic as having everyone working that day spend five minutes interacting with a resident. "Some of those behaviours have responded very well to something called a pro-attention plan, which involves spending time with that resident each hour for a few minutes so that they feel as though they are not alone," Bender says. "The time commitment by the staff is minimal, but the resident is getting the attention that he or she needs to minimize the behaviour."

Over a period of a few weeks, Puchniak and Sinclair would visit Middlechurch and meet with staff in the huddles. "Each week we would talk about that resident. How did it go? What was different? What improved and what didn't?" Sinclair says. "And we would adjust our plan accordingly, and then over the course of six weeks the person would be completely eased off their antipsychotic medication."

The focus of care over that period changed too, says Sandy Peers, Nursing Co-ordinator at Middlechurch Home. Residents had their medication reduced while staff - including housekeeping and dietary aides - collaborated to understand the motivation behind residents' behaviours and find creative ways to address the underlying causes.

In some cases, that meant providing residents with things that had a connection to their previous lives, like providing a former teacher with schoolwork to mark, or giving a modified tool box to a former mechanic. In other situations, the modifications were simply taking time to talk and listen regularly to the residents before they acted out with the challenging behaviour and then received attention from staff.

"Their needs could be very simple - they may be hungry; they might have to go to the bathroom, or they may have pain," Peers says.

That may sound elementary, but providing care for residents with complex needs is challenging even at the best of times, and basic needs occasionally can be overlooked as the source of behaviour with residents with dementia, he says.

Furthermore, without being able to map behaviour over time and then analyze the data, care providers could not see the patterns. The behaviour might seem random without knowing the data. But MDS might reveal that a type of behaviour is precipitated by relatively innocuous and mundane problems that could be easily solved in many cases.

"Once you deal with the issue causing the behaviour, the behaviour will diminish," he says. "But if you're unable to see the real root of the problem, you can't find the solution."

Thanks to the EXTRA project, all the data collected on the residents they selected was being mined purposefully. It was organized, analyzed and then made available. As the project progressed, staff and management were updated regularly about the collected data.

"It offered them more of a buy-in," Peers says. "The staff feel more empowered by what they're doing because they see results."

At first, some staff members were skeptical that P.I.E.C.E.S. would work. But over the next few weeks, the data revealed a fascinating discovery. "Anecdotally, we were already seeing enthusiasm from the staff about the changes, but when the MDS data proved that P.I.E.C.E.S. was making a clear improvement in resident care, it was extremely exciting to see," Puchniak says.

Statistically, over a six-month period, the home saw more than a 20 per cent reduction in antipsychotic medication use among the residents that were on the drugs when the project began. Overall, at the start of the project, 40 per cent of residents at Middlechurch were taking antipsychotic medication. Six months later, only 30 per cent of residents were prescribed antipsychotics. "That's a huge decline," Bender says. "It's one thing that we can see it's working because we can see a difference in the residents, but to have that concrete result shows everybody that it really works."

While the incidence of challenging behaviours among these residents didn't actually decrease over that time, that was really of little concern to Sinclair and Puchniak. In fact, that was an expected result from the start. "We said it likely won't change because our data historically has shown that for the residents in homes with low levels of antipsychotic medication use, their behaviour levels haven't changed, but they haven't gotten worse either."

Even without the decrease in behaviours among residents participating in the project, their quality of life got better simply because they were no longer taking a medication that carried many risks and side-effects. And just as importantly, the reduction in drug use meant a decrease in costs. Antipsychotic medication pills are expensive, for example olanzipine costs about $5 a pill and is taken as many as three times a day. Fifteen dollars may not sound like much, but when multiplied by hundreds of patients at dozens of homes over days, weeks and years, it's a substantial amount of money. And it's money that could be used for other care initiatives to provide better outcomes for residents suffering from dementia.

But to the care providers and management, the changes had another effect that is still evident today. Staff members now feel empowered and generally better about the care they provide, Peers says. "If a person is heavily sedated, his or her quality of life is really poor," he says, adding everyone working at the home was aware of this fact. "When we're cutting down on antipsychotics, we're cutting down on reducing falls, injuries and illness, and in the end, residents have a better quality of life."

Now the challenge for Middlechurch is to sustain these changes. The weekly huddles will continue to play a vital role. And that means the ongoing participation from all the staff is also essential. It won't be easy, Bender says, but it will be worth it. "It's something else that we have to add to an already considerable workload, but I think it's worth it," she says.

Fortunately, throughout the EXTRA project and even today, staff have had the support of the doctors at the home, which makes sustaining change much less difficult. "Our physicians have been excellent," Bender says. "They've really had a buy-in and we're really happy about that."

For Puchniak and Sinclair, who now must bring together all the data and defend their findings in February when they meet with the other EXTRA fellows, the project potentially marks the start of a new era of evidence-based care and management for long-term care in the Region that could set a precedent on a national scale and provide a leading example of how to effectively use the MDS data for other regions and provinces across the country to follow.

"It's really about using a system (MDS) that we already have in place to manage our precious resources as efficiently and intelligently as possible," Puchniak says. "Considering our aging population and the increasingly complex health and social needs of the long-term care population, we need to use all tools at our disposal to their maximum potential in order to effectively meet the needs of our clientele now and in the future."

Réal Cloutier, Chief Operating Officer & Vice President, Long-Term Care for the Region, agrees. "There is incredible potential for this kind of information to be used to assist with strategic planning, operational management and quality improvement across personal care home facilities in the Region," says Cloutier. "This project is a strong first step towards realizing this potential. It also has great potential for engaging staff and families in efforts to further enhance quality of care for seniors in our long-term care facilities."

The project's timing could not be better. Over the next decade, Manitoba's aging population will lead to an increase in the number of people with more complex health and social needs in long-term care. Undoubtedly, resources will be stretched, as they already are today. But Puchniak says the knowledge needed to effectively care for residents in these environments is also growing. In fact, many of the answers to the problems of today and the future are virtually at the system's fingertips. The information is there, it's just a matter of using the data to its greatest potential, he says. "Let's be smart about the decisions that we make. Where do we choose to spend our time?"

The focus on health care is often about how we can increase monetary investment, he says. But rarely does anyone speak of disinvestment. "If something is not effective or not working, let's stop doing that," he says. "With a system like MDS, you can see if we're doing something and it's not working. If that's the case, we can stop doing that and focus our energy somewhere else."

Joel Schlesinger is a Winnipeg writer.

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