Palace of Care – Roller-Coaster Ride

Photo by Itai Aarons on Unsplash

He had loved his last job and had done well until the stroke. A bolt of lightning had struck him down and rendered one side of his body paralysed. His mind was still intact and his will was strong which allowed him to recover well over the next months. He needed to walk with walking aids and had severe fatigue but he adjusted to his debilitated life. Speaking and writing were still effective forms of communication. Life was different but the strongest organ in his body still functioned well – his brain worked as well as ever.

He had lost the use of his legs earlier in the year. Nothing out of the ordinary had happened before they stopped working. It was thought to be due to a late side-effect of the life-saving radiotherapy he had received decades ago, which had helped to cure the cancer that almost killed him. He hadn’t been out of bed since then without great difficulty. He could not move his legs but the sensory nerves were intact. He was able to cope with the further disability until the pains started. It was a cruel combination, his legs were unable to move but were able to feel nerve-related pain. By the time I visited him at home the pain had been worsening over the past weeks. His medications which included nerve pain agents were not working. The strong opioids we had advised him to have were not controlling his pain but clouded his brain.

He was in bad shape. When the pain was there everything else in the world faded into the background. The pain relief medication’s side effects made him confused. Bad constipation made everything else worse. He was developing a pressure ulcer in his sacral area. He had refused all medications the morning of my visit. I thought he was in big trouble and he needed to be admitted as the couple were not coping at home. It took a few minutes of convincing before he agreed to the admission. I promised we would only keep him in hospice for as short a time as possible. I left the house and caught up with him when he arrived in the hospice in the afternoon.

With a change in his medications, his pain was well controlled and his mind cleared over the next three days. We sorted his constipation and his sacral pressure area improved. We optimised his home support and he was able to discharge home successfully. Over the next six months, his pain worsened, and we needed to adjust his medication doses which worked well until it didn’t. He was readmitted to hospice and we tried various medication combinations but this time around the gains in pain relief came at the cost of his brain function which he found unacceptable and led to severe lowering of his mood and many tears at times. “I can’t go on like this,” he would tell us, and we would agree with him. We asked him if we could do anything for his mood, but he refused anything we offered, which he had always done in the past.

We made a referral to a local neurosurgeon who had a special interest in pain relieving procedures. The motor nerves supplying his legs didn’t work but the sensory nerve pain fibres were overactive. An operation called cordotomy was offered, this would involve cutting the sensory component of the spinal cord at the level that supplied his legs. The surgeon was hopeful that the pain signals would be disrupted, taking away the nerve pain.

My patient asked me what I thought. I talked about us having tried everything available to treat his pain and we had failed to control his pain without diminishing his brain. With uncontrolled pain and despair, his likely prognosis was poor and his quality of life non-existent. If everything continued this way he would likely die soon. If the operation worked he might have better pain control and he might be able to reduce his medications leading to fewer side effects. I recommended he have the operation. I hoped it would work.

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