BY GRACE L. FRANCIS AND VICTORIA MCMULLEN
Living with someone who has chronic pain is difficult; living with someone who is in pain and also has challenging behavior and limited communication abilities can be downright miserable for all involved. Ron, age 35, has numerous educational and medical diagnoses, including mixed type cerebral palsy, spina bifida, intellectual disability, and autism. He also experiences many types of chronic pain related to conditions such as osteoarthritis, tempomandibular joint disorder (TMJ), severe mouth ulcers, severe reflux disease, frequent sinus infections, chronic constipation, and lower back and foot pain.
Ron has a number of verbal and nonverbal behaviors that communicate his distress. For instance, he lets out a startling yelp after inadvertently biting a mouth ulcer, slaps his cheek when experiencing TMJ pain, and when in severe pain, he mutters and pivots in small circles. Families know their children better than anyone else, making it fairly easy for them to detect pain. However, it is not so easy for families to teach support staff how to recognize that certain behaviors indicate pain, especially when the behaviors are nuanced (e.g., Ron also yelps when excited, but the pitch and frequency differs when he is in pain). As a result, Ron’s team of family members and support staff use a five-step protocol to more effectively address his pain: (1) detect the presence of pain, (2) analyze the impact of pain, (3) investigate the underlying cause of pain, (4) treat the pain, and (5) evaluate the effectiveness of the treatment.
DETECT THE PRESENCE OF PAIN
Ron’s team employs a number of tools, including body scans, to determine if and where Ron is in pain. Starting at his head, we press on his sinuses, wiggle his ears, press on the TMJ joint, check his eyes for redness and indicators of shunt failure, check his mouth for ulcers, and give him a backrub to check for muscle spasms in his lower back. A Pain Identification Visual is another tool that can help individuals communicate the location of their pain by pointing to the appropriate body image. If possible, it is best to use actual photos of the individual in the tool to increase accuracy of identification. Another helpful tool is a Symptom/Condition/Treatment Chart that lists the most common types of pain experienced and physical and behavioral indicators of that condition. Staff reference Ron’s chart to determine if observed symptoms correspond with a medical condition, and, if so, strategies they can use to address the pain (e.g., take off leg braces). Ron’s team treats this tool as a living document by discussing it during monthly meetings and adding new symptoms, conditions, and treatment strategies as they emerge.
ANALYZE THE IMPACT OF PAIN
Because Ron is unable to differentiate his levels of pain, we created an Individualized Behavioral Pain Scale that allows staff to rate his level of pain from one to 10 and guides them to make treatment decisions based on these ratings. For example, level one on Ron’s scale involves no complaints of pain and behaviors such as Ron making plans for leaving the house. On the other hand, behaviors at level 10 include refusing to sit, sweating profusely, and engaging in self-injurious or aggressive behavior. Staff use this tool to determine the intensity of Ron’s pain and how they should respond (e.g., provide finger foods, redirect circles after five minutes, what medications to administer). They also record behavior ratings in a Daily Log to help determine patterns in behavior to better understand why the pain is occurring.
INVESTIGATE THE UNDERLYING CAUSE OF PAIN
Ron’s team maintained a Daily Log, recording elements related to Ron’s health (e.g., sleep, bowel movements, medication), behavior ratings, and daily activities. During the time that his reflux was at its worst, Ron communicated his pain through behavior, but also by telling us that he needed the dentist. The dentist confirmed that the pain was likely a result of reflux, but why it flared so intensely remained a mystery. Ron’s team reviewed his Daily Log and noticed higher behavior ratings occurred after he took a particular medication. This medication, as it turns out, had side effects including agitation, profuse sweating, and acid reflux. Ron’s log has proven useful to determine a number of other causes of pain (e.g., reflux as a result of diet, severe reactions to pollen after activities in the community), allowing us to address the source of the pain, as well as the symptoms.
TREAT THE PAIN
Ron is prescribed a number of daily and “as needed” medications. Ron’s family maintains a list of all medications and their dosages, purposes, and side effects in a cabinet where medication is kept. All staff are trained to (a) reference Ron’s Symptom/Condition/Treatment Chart for appropriate treatment strategies based on Ron’s symptoms (e.g., message back), (b) use the Individualized Behavioral Pain Scale to determine the intensity of pain and appropriate staff responses (e.g., reduce demands, pain medication), and (c) refer to Ron’s log and the medication list to determine when Ron should receive medication and document his medication intake to prevent over- or under-dosages.
EVALUATE THE EFFECTIVENESS OF THE TREATMENT
Noting Ron’s pain levels and symptoms in his Daily Log allowed us to see if our treatment was effective. For example, when Ron’s TMJ bothers him, the medication he takes usually results in a dramatic behavioral improvement within an hour. If there is not an improvement, the team continues to investigate the cause of his pain using his Symptom/Condition/Treatment Chart. If there is an improvement, but the medication is used every day for a week (which, according to his log, is double the typical length of time), then Ron needs to visit his dentist to get his mouth guard adjusted. Maintaining a Daily Log is essential for establishing a baseline and identifying trends to better evaluate treatment methods.
The use of these steps allows Ron to live a full life. Over the last several years, Ron’s life has changed dramatically. At one point, for a number of months, he spent most days at home with a behavior rating between seven and eight. During this time staff focused on minimizing demands and providing comfort measures, in accordance with his Behavioral Pain Scale. As each condition was identified and treated, his pain decreased. Eventually, he was able to reengage in volunteer work and recreation activities in the community. His life has become one in which an incidence of pain is an inconvenience rather than a lifestyle. •
ABOUT THE AUTHORS:
Grace L. Francis is Ron’s former support staff and currently a professor of special education at George Mason University.
Victoria McMullen is Ron’s mother and a professor of special education at Webster University.
Oberlander, T. F. “Pain Assessment and Management in Infants and Young Children with Developmental
Disabilities.” Infants and Young Children, 1(2001): 33-4