It was a day like any other. He woke up and was helped by the staff out of bed. Breakfast was served, it was the usual porridge, toast and jam. Finished off with a nice cup of tea. The next part of the routine involved having a shower which would take half an hour. Nothing out of the normal at all. His wife would be coming to visit for morning tea, they would read the paper together. See what was going on in the world. The same routine they had followed over many months.

Everything changed when his hand started twitching. You had to really look to notice it, and it would be gone within seconds. When this happened his face looked as if all expression had been wiped away by a whiteboard eraser. Blank. More of these episodes occurred but only some were noticed by the busy care home staff. One registered nurse supervising the care of 20 to 40 patients was the norm for the industry. In recent months it was up to 60 patients, and the staff had trouble attending to their residents’ routine care, let alone anything out of the ordinary.

The care assistant noticed the patient’s body stiffening, his right arm clenched too tight to not be painful, a pained expression on his otherwise blank face. He did not respond to voice. The arm clenching lasted for a minute and was followed by violent shaking of his right arm and leg. The bedsheets became wet. The jerks lasted for two minutes at which point the patient awoke. He was disorientated and had no memory of what had happened. The on-call doctor had been called to review the patient, but would not be available until the afternoon. Whilst awaiting the doctor’s visit two further seizures were witnessed and the patient was sent to the hospital.

What followed were long weeks of assessments by many different specialist doctors. Many scans and invasive procedures looked for a cause for the seizures. Treatments were started to try to control the seizures. One medication was started, then another, and another but the seizures persisted, as the patient’s consciousness levels desisted. The local experts were called in and gave their opinions. The brain scans revealed worsening of a ‘benign’ brain tumour – benign meaning not spreading but as we saw in this case, not a benign outcome. Despite all efforts, the seizures and worsening consciousness levels worsened.

Serious conversations about end-of-life were held and it was decided to keep him comfortable as none of the treatments had worked. They had tube-fed him but he kept pulling out the uncomfortable tube which went through his nostril into his stomach. Palliative care advice was sought and an infusion was started to replace medications that could no longer be given to him including the three anti-seizure medications in combination.

Finally, an infusion was started and controlled the seizures. The hospital teams expected the patient would die soon. Everyone was surprised when he woke up and talked for the first time in weeks.