Prognosis

I was on my last placement on the spinal unit at Shenton Park with Flic and we couldn’t help but become attached with one of our more memorable patients, a Down’s Syndrome male with incomplete tetraplegia (J.T.). The story of this lovable larrikin is complex, however to put it simply, he should not be an tetraplegic. His widowed mother, who is probably in her late 60s, is very protective of her son and has looked after him all his life. Six months prior, J.T. was ambulating independently, however due to his cognitive deficit he was highly dependent on his mother for many ADL’s (e.g. cooking, cleaning, driving). During the following six months the mother had noticed a slow decline in her son’s motor function. At first she had thought that he was just becoming lazy, however movement in his legs had declined so rapidly that he soon required a wheelchair. At this point he was admitted to SJGH where CT-scan revealed spinal canal stenosis from C3-5 causing compression of the spinal cord. This required surgery in which the stenosed segments were decompressed and vertebral segments were fused from C3-5 to maintain stability. Recovery following surgery began well, with J.T. regaining partial motor function in his legs however this recovery took a turn for the worse when he was allowed to sit to 90deg in a SOMI brace. J.T.’s lower limb recovery had begun to plateau and he had noticable loss of his (R) hand intrinsic muscle function and his triceps had weakened to G3+ bilaterally. Muscle charting and sensory assessment was difficult with J.T. due to his cognitive disability, however over the period we had assessed him (5 weeks) he had made minor improvements to his tricep strength however a noticable improvement to his (R) intrinsic hand function. Although his light touch and sharp blunt discrimination of his lower limbs was partially present, it seemed that the chances of J.T. regaining full motor recovery of his LLs to be very slim.

J.T.’s overbearing mother was very concerned with his progress at the spinal gym and had attributed his lack of (R) hand activity to him being ‘lazy’. It was obvious that the severity of J.T.’s condition and his prognosis had not been explained to his mother, who without any assistance at home would struggle to look after her son independently. She seemed to be quite concerned that her child had been put under the responsibilities of two students, and attributed his slow progression to the fact that we were not ‘working him hard enough’. There were often times were we had both felt that the seriousness of her son’s condition needed to be explained to her, however as students we did not feel it was our place. We had asked on numerous occasions for her to speak with the surgeon and consultant regarding J.T.’s prognosis, however both these doctor’s seemed too hard to track down and no one was willing to take the responsibility of explaining her son’s situation. This continued for a month while we were at Shenton Park, and this was not the only case where a prognostic meeting had been missed. It seemed (from other cases) that some of the consultants were very good at ‘beating around the bush’ and even if a prognostic meeting was to be held, many family members left the meeting feeling confused or as if they had been given false hope. What would you do in this situation if a close family member of a patient had been left in the dark for so long?