January 01, 2021
NOTE: There are many wonderful non-drug ways to manage pain in elders with dementia. Physical therapy is a wonderful, often overlooked resource! Heat, positioning, massage… the list goes on. But, we’re not here to talk about that today. Today, we’re focusing specifically on the difference between scheduling medications and giving them “as needed” for recurrent or chronic pain in dementia, especially in a facility setting.
PRN (from the Latin phrase “Pro re Nata”): medication given only as needed or requested
Scheduled: Given routinely, at predetermined times
The person has trouble recognizing and clearly communicating their pain.
As the pain worsens, so does its effects (changes in behavior, sleep, activity level, appetite, etc)
If the person with dementia accepts the pain medication readily, it's still another 30-40 minutes (in many cases) before the medication can take effect and they experience pain relief.
Because the pain is more intense (say an 8 instead of a 4 on a 10 point pain scale), it will likely take more pain medication to reduce it. The pain may be severe enough that the ordered medication can’t effectively treat it (adding to the misperception that because the pain medication didn’t help, pain wasn’t the problem).
In many cases, by the time they reach this point, the person is not agreeable to taking medication. Among other things, pain, and the effects of untreated pain, such as disrupted sleep and malnutrition can contribute to delusions, paranoia and hallucinations.
How long must our people hurt before their pain is relieved? How complete is their pain relief? Could it have been better relieved if it were treated in its earlier stages?
“I can’t tell the doctor that she needs more pain medication when she’s not even taking the PRNs she has available,” explained the nurse for the fiftieth time. “There’s no justification for it.”
“Except that she’s hurting,” I insisted, although I knew full well she was right. We’d been down this road before, with numerous residents over the years.
PRNs were meds that could be given “as needed” according to certain criteria – such as if Berta asked for one. The doctor was conservative in prescribing pain medication – rightly so, from the information available to him, anyway.
We were both frustrated.
Berta’s bones would crackle when we transferred her. She would whimper, cry and hit. A tiny pain pill in the morning, and another in the evening helped – a tiny bit. She cried less and moved about a bit more for about four hours. She sat rigid and still in her wheelchair the rest of the time.
The med aides would ask her if she was hurting. “No!” she would scowl. Sometimes she would sleep through the question, withdrawn and detached from her painful body.
It took a while, but over time we figured out how to quantify the information that the doctor needed to justify scheduling pain meds. It was always a process. (Which is for the best, because starting low and increasing the dosage slowly is a really important tenet in geriatric medicine.)
Recognizing and translating signs of pain became very important, Many of our residents would deny they had pain, so we had to learn to look beyond their verbal response to see the whole picture.
The most confusing cases for many of us were the residents who would sometimes admit they were hurting, but other times would not. I liken this to the way my 7 year old will sometimes adamantly insist that she is NOT TIRED when I believe that she, in fact, is. Even though sometimes she can sometimes recognize fatigue in herself, she can’t always do it reliably.
(Ha ha, neither can I, for that matter…)
Often, the pain wouldn’t start until they moved. I don’t know how many times I heard that they felt fine, as long as they didn’t move. I didn’t personally believe that counted as pain being under control. Aside from the fact that you have to move eventually, and that lack of movement creates an insane risk for skin breakdown, where is the quality of life?
Our group found that the popular “Faces” scale wasn’t as effective for our population as the PAINAD, a tool designed to quantify pain in people with advanced dementia. This tool can translate outward, objective potential pain behaviors into a quantifiable scale that corresponds with the widely accepted 1-10 pain rating scale. Over the years, we found it to have a generally high degree of accuracy from what we could see in our people.
Incorporating the PAINAD into our community culture was an ongoing effort, but it definitely paid off as staff became more attuned to the non-verbal signs of pain described on the tool. Labored breathing, rigidity, crying, or one of my personal favorites when it came to “medicalizing” descriptions of behaviors: “negative vocalizations''.
So much of the crabbiness, complaining, argumentativeness, yelling, grumbling, harrumphing and general irritation could be described quite accurately and effectively with this one wonderful term.
In addition to becoming more aware as a team of these signs and symptoms of potential pain, we also had to work with the nurses and doctors to ensure that our medication orders were written in a way that were actually usable and useful. Our non-licensed staff could only give PRN medications under their exact parameters, so the exact wording was very important.
We started to learn how to write the order requests differently so that they allowed the pain meds to be given when needed. For example, we changed the standard parameter from “for complaints of pain” to “for signs, symptoms or complaints of pain” or “for pain greater or equal to 4/10 per PAINAD scale”.
Whenever possible we wrote in each individual’s specific signs, for example:. “Typical signs of pain for this person include grimacing, cursing and pacing.”
For a long time, more often than not, staff would tend to overlook it when residents hit them during care. They were supposed to report it, but many would not.
“It’s okay, it didn’t hurt,” they would say kindly.
“I know she didn’t mean it. It’s just the dementia.”
Or, my personal favorite-worst: “I don’t want them to get in trouble.”
We pretty much had to launch a full-fledged campaign to evolve this way of thinking. We wanted ALL behavior reported, not just major problems.
“The point is NOT that it doesn’t hurt when they hit you,” we reiterated, countless times. “The point is that she’s communicating to us with her behavior – it’s the only way she can. If we don’t pay attention to her message, nothing changes for her. She keeps hurting, or being afraid, or feeling traumatized by what she’s going through. We are dementia care professionals. It is our job to hear what she is saying, and to translate and advocate for her.”
The strongest way we had to pay attention to this communication was to document every occurrence on an incident report form. We had all kinds of protocols regarding how to handle “incidents”. We notified doctors and health care representatives; we met regularly specifically to discuss how to respond to incidents, and to reduce the chance of them recurring. If something was considered an “incident” it got a lot of attention, weight and value.
If we could document the fact that this person had four or five incidents of striking out at staff during personal care, we could then use that to catalyze change for them.
During our incident meetings, we were able to look for trends. We involved as much frontline staff as possible. It got wonderful conversations started about why, for example, does she strike out when certain caregivers help her, but not others? What do some know, or do differently? Which specific words do they use, or avoid, during care? How can we get that information to others? Why does she tend to hit more in the morning than the evening? Why does it often occur with toileting, but never with bathing?
We would discuss our hypotheses about the need or trigger underlying the behavior, and what might work to alleviate it. What had worked for another resident in a similar circumstance? Could we try that tactic with this person, too? As a team, we found all sorts of non-drug interactions this way. Singing, cradling baby dolls, doing care in the bedroom instead of the bathroom… the list goes on.
We found that, in a large percentage of cases, undertreated pain appeared to be the underlying issue.
Once we had gathered and documented the data, it became a powerful tool. We could use it to request a limited time pain medication trial, or other appropriate intervention. When we had the numbers we could show that, for example:
In the four weeks prior to her pain med trial, she averaged four combative behaviors during personal care. During her two week pain trial, no combative behavior has been reported. Staff report she is more alert and active, and her average intake has improved by 55%.
Another thing that helped on occasion was to schedule pain evaluations regularly. The staff would be responsible for routinely completing a PAINAD or pain evaluation every 4 hours, for example. Generally, this occured in cases where the resident already had a PRN order that they weren’t often receiving. These were usually residents who had long histories of tearfulness, crankiness or other behavior, and many of the staff believed that these residents were “just like that”.
By having them look at the objective criteria, give the pain medication when indicated, and see the results firsthand (typically the resident would be in much better space afterward) we were able to continue making change, not only for the resident in pain themselves, but for the culture as a whole – meaning that future residents didn’t have to hurt as long before we were able to figure out how to help them.
Bud had lived with chronic severe back pain after falling off a roof fifty years before he came to live in our memory community. As we were preparing for his move into the community we asked his wife if he had any pain issues.
“No, not currently. He used to hurt,” she mentioned, recounting the accident. “I could tell his pain was quite intense, although he never really talked about it. He just took care of it. He took ibuprofen, and when it got bad he would take a hot bath…. He hasn’t done that in a while, though, come to think of it...”
Bud had been a stoic man by nature. Typical of men of the Greatest Generation, he didn't complain about pain. Complaining about pain was generally equated with weakness for many of these men – and Bud was NOT a weakling.
But he also was no longer able to access ibuprofen on his own. He could have it if he requested it, or if he "complained of" pain, but he never did. There was nothing in his routine medication regimen for pain.
Knowing that baths had helped him in the past, we offered and encouraged them, but since he couldn't just hop in the tub on his own at the early signs of stiffness, they lost much of their effectiveness. Similarly, since he could no longer pop a couple ibuprofen when his bones first started to creak, he lost the ability to stay ahead of the pain.
The pain grew, but he didn't complain. When we asked outright if he was hurting, he would reflexively answer “no”. We might as well have been asking him if he was a "sissy weakling".
I believe that his dementia also progressed to where he no longer recognized the pain as such. He knew something was wrong, but it wasn't clear in his mind exactly what was wrong, or what to do about it.
He paced. The more he hurt the more he paced. And the more he paced, the more he hurt.
He got to where he couldn't sleep, or sit still at all. He was so exhausted he could barely remain standing without crumpling or toppling over. He began to fall frequently. The falls jolted his skeleton and worsened his pain.
The pain worsened the restlessness, which worsened the exhaustion, which worsened the falls. The falls worsened the pain.
He started to experience lapses in consciousness, passing out momentarily at seemingly random times.
We called in a palliative (comfort) care nurse specialist who explained that, despite his denials, he was indeed in pain – excruciating pain. She explained that the lapses of consciousness were likely episodes of vasovagal syncope, triggered by the intense pain.
She arranged for his pain to be treated with routine medication.
It made a remarkable difference for him! For the first time in a long while, he could actually sit still, rest, and relax. He was markedly more alert and clear of mind.
Numerous studies indicate that people with dementia frequently have pain, yet receive significantly less pain medicine than those without it, even after undergoing the same medical procedure, or when diagnosed with the same conditions. Researchers conclude that there is a clear need to improve pain assessment and management practices for people living with dementia.
A 2018 comprehensive review of eighty studies, representing over 20,000 patients in pain, showed that up to 91% of the time, professional care staff underestimated their patients’ pain. 1% of the time they overestimated it.
When pain is inadequately treated in dementia, it often looks like "behavior problems", sleep problems, failure to thrive, or depression.
All too often pain is misidentified and treated with inappropriate medications, including antipsychotics with dangerous side effects. And while antipsychotic medication may have an important place in treating disturbing psychotic symptoms in dementia, it's widely known that these medications are grossly overused in dementia. They often bring debilitating side effects – and do nothing to alleviate pain.
Decreased social interaction
Sudden changes in routine
Not eating or changes in appetite
Increase in confusion
Grimacing, furrowed brow
Resistance to personal care
Disruptive or socially inappropriate behaviors
Calling out for help repeatedly
Holding, guarding, touching or rubbing an area of the body
Swollen or disfigured areas that look like they would hurt
Other clues to look for:
- They "used to" have chronic pain, but don't mention it anymore.
- They have diagnoses that indicate painful conditions.
Numerous studies have concluded that pain has a detrimental effect on cognitive processes, including memory, attention, processing speed and executive functioning.
From the University of California San Francisco:
“For example, a recent study of chronic pain sufferers found that those who took nonsteroidal anti-inflammatory drugs, such as ibuprofen, had nearly the same increased dementia risk as those taking opioids.
“This means we have to consider the potential direct effects of chronic pain on cognition,” [Elizabeth Whitlock, MD, MSc, a postdoctoral fellow in the UCSF Department of Anesthesia and Perioperative Care] said.
People who suffer from chronic pain tend to have diminished attentional capacity and impaired memory, and Whitlock said that particularly when pain is severe or causes patients to ruminate, it could divert enough attention to interfere with the consolidation of memory. Another possibility, she said, is that the emotional stress of being in pain activates stress-hormone pathways in the body that have been implicated in cognitive decline. If either is the case, she said, then effectively treating the pain could protect cognition.”
Some interesting thoughts on PRN versus routine pain management from doctors and scientists around the web.
Using pain medicine at the first sign of pain may help control it better.
"A large proportion of the old people in geriatric care settings suffer from pain, and undertreatment of pain appears to be a significant problem… In geriatric care, prescribed PRN analgesics are actually given fairly seldom, and it might therefore be better to treat especially the cognitively impaired with regular medication, to ensure that they receive their pain relief.”
Dr. Richard D. Blondell, MD, Dr. Mohammadreza Azadfard, MD, and Angela M. Wisniewski, PharmD, State University of New York at Buffalo School of Medicine and Biomedical Sciences in Buffalo, New York write in American Family Physician: “Scheduled, rather than as-needed dosing, provides more consistent drug levels and therefore more consistent pain control.”
Dr. Carol Warfield, Department of Anesthesia, Critical Care and Pain Medicine at Beth Israel Deaconess Medical Center in Boston, says, “When using painkillers, the idea is to stay ahead of the pain… If you get ahead of the pain, this prevents the body from releasing all sorts of substances that make pain worse.
“Take note of when you feel your achiest, and then take your pain reliever just before that time period. For instance, if you tend to feel stiffness and pain in the morning, you may want to take your acetaminophen before [that time],” says Gerald M. Aronoff, MD, medical director of Carolina Pain Associates in North Carolina, past president of the American Academy of Pain Medicine, and author of Medication Management of Chronic Pain: What You Need to Know.”
Among other helpful information, this nursing guidebook states that when continuous pain is anticipated, medication should be scheduled around the clock.
This nursing guidebook notes that 45-80% of elderly patients in nursing homes experience substantial pain that is grossly undertreated.
The guidebook discusses the importance of controlling pain, citing its common complications:
- Increased risk of depression
- Affects relationships
- Inhibits activity
- Detrimentally affects the endocrine, metabolic, cardiovascular, gastrointestinal and immune systems, which, in turn, wreak havoc on physical health and the body’s ability to heal or thrive
While Dr. Gonzales’ statement is specific to a hospital in-patient setting, the concept of controlling pain to enable mobility, appetite, and reduce complications of the loss of those two all-important aspects of a person’s wellbeing translates well to dementia care in any setting.
Treating pain enables people to participate more fully in therapy, therefore promoting better healing and outcomes all around, explains Dr. B. Eliot Cole, MD, director of education for the American Academy of Pain Management.
Dr. David Gonzales, M.D., director of patient care and the hospitalist program at Heart Hospital in Albuquerque writes, “We don’t treat pain on an as-needed basis. We anticipate the pain and treat the patients accordingly... This controls patients’ pain, their appetites return faster, they can mobilize sooner, and we see fewer cases of common postoperative conditions such as pneumonia.”