What does pain look like in a person who cannot speak? Most often with Nicholas, it looks like this:
But what about pain in those we love who have severe communication and cognitive impairments - loved ones with Alzheimer's, severe dementia, and certainly severe cognitive disabilities? They may feel pain, but sometimes cannot express it in ways that family members and medical professionals can understand.
Yesterday, I listened in to a webinar about pain in children with severe developmental disabilities. It was presented by the Canadian Association of Paediatric Health Centres, but there was plenty of information and practical advice about loved ones of any age who are unable express the pain they feel.
73.5% more children with severe disabilities experience pain compared to their able-bodied peers, according to reporting by their parents. Pain can arise as a result of simple activities of daily living, assistive devices (such as seating), acute pain from conditions such as dislocated hips or bony contractures as well as chronic pain resulting from immobility. Gastric pain is another significant culprit in the discomfort experienced by children with severe disabilities.
Pain specialists and webinar presenters Dr. Frank Symons and Dr. Frank Oberlander described three types of pain: physiological pain, inflammatory pain and neuropathic pain. Each type requires different management, and when the type of pain is difficult to discern, often the treatment is wrong.
Dr. Symons and Dr. Oberlander discussed their research interest in finding objective measures for pain that could be useful when simple observation does not give the family or treatment team good information about the source of patient distress. Small changes in saliva, blood, cerebrospinal fluid or hormones are all under investigation as potential markers for the type and level of pain.
Nicholas has had chronic pain for much of his life and at times, his pain has been uncontrolled. Screaming was an indicator that we all understood, but very often we had great difficulty in locating the source of his distress. He has always been on oral opioids to alleviate pain from hip dislocations and nerve pain. But I recall on one occasion, Nick was screaming in agony night after night. I changed his feeding schedule, adjusted medications, cuddled him, fed him, massaged him... nothing worked. Finally, in desperation, I arranged an admission to the hospital for observation. I recall the treating physician suggesting that in the absence of any other ideas, we would treat constipation aggressively while we waited for other tests to be completed. After three days, Nick's screaming suddenly stopped. X-rays of his abdomen showed that Nick was impacted high in his intestine and the bowel regimen had worked. Treating pain in non-speaking loved ones can be a crap shoot (forgive the pun!) and that time, we simply got lucky.
The International Institute for the Study of Pain uses a scale of 1-10 with corresponding facial expressions. But everyone is different and although the facial pain scale is a helpful tool for some, it didn't apply to Nicholas. His facial expression for extreme pain is most often a look of extreme surprise or 'frozen fear'. When we observe sweaty palms and feet together with a high heart rate, we look for a source of pain and if we can't find one, we treat it anyway. The lesson here is to find a pain scale that is individual and fairly reliable for that person.
Doctors Symons and Oberlander candidly discussed the challenges facing the pain specialist when treating patients who cannot communicate their experience in ways that are easily understood. This state of affairs can easily lead to the team doubting their diagnosis. In that case, Dr. Oberlander asks, "Do we even need a diagnosis? When should we stop the unending search for a diagnosis? Is the symptom itself a diagnosis?" Clearly, treating patients with severe disabilities poses difficult challenges for the team and also for the family caregivers who don't know how or what to report to doctors, other than symptoms that may or may not be significant. Dr. Oberlander suggests that it's better to resist seeking a single diagnosis. For example, he says, not all irritability is derived from physical pain. Some non-pain events such as seizures can cause distress. Or, in the case of cerebral palsy, seizures can trigger increased spasticity which in turn can trigger increased pain due to dislocated joints or other orthopaedic problems.
There are many reasons that pain management can fail a person who has severe disabilities and communication difficulties. We are fortunate that Nicholas can say a clear 'Yes' and 'No'. So, Nick can tell us if he has 'no pain', 'some pain' or 'a lot of pain'. But because he very afraid of going to the hospital if he reports a lot of pain, often he will simply fib and under-report his discomfort. We need to watch carefully for subtle signs and we give extra pain meds based on what we observe.
When we watch our loved ones who cannot speak, we realise that what they experience and what they express are not the same thing. We must watch carefully, identify indicators and develop our own custom pain scales the best we can. Caregivers have many roles and being the voice of pain for someone you love is one of the most vital.