Looking living death in the faceBMJ 1996; 313 doi: https://doi.org/10.1136/bmj.313.7069.1408 (Published 30 November 1996) Cite this as: BMJ 1996;313:1408
- Naomi Craft
When the House of Lords ruled that Tony Bland should be allowed to die, most of us believed that he was practically dead already. Tony was a tragic victim of the Hillsborough disaster. He was in a persistent vegetative state (PVS), which meant that he seemed to be awake with his eyes open but had no level of awareness. The only reason he remained alive was because he was artificially fed. We were assured there could be no mistake about the diagnosis and no hope of recovery. This Monday's Horizon programme Living Death undermined those assurances, telling us that persistent vegetative state is an unreliable diagnosis. It claimed that some patients, far from being awake but unaware of their environment, may have been misdiagnosed and may be aware and thinking inside their paralysed bodies.
There are estimated to be up to 1500 patients in the persistent vegetative state in Britain. The programme's hypothesis is that the real number of those who actually have the condition is substantially smaller than this. By way of example, Horizon looked at two patients, Geoff and Marian—both misdiagnosed as being in a persistent vegetative state. It also quoted from a study recently published in the BMJ which suggested that the rate of misdiagnosis may be as high as 40%.
At 19, Geoff Wildsmith had an accident that left him unconscious with serious brain injuries. He was diagnosed as being in the persistent vegetative state. After nearly two years, he was transferred to the Royal Hospital for Neurodisability in London, where, with the use of a touch sensitive buzzer, he was apparently able to communicate again. “It was pretty awful. I felt so bored to tears,” he wrote of the early days after the injury. To cope with his predicament, he says he found inner strength by praying every day. It seems that Geoff was the lucky one. Marian died before the buzzer was invented. She spent 11 years with a diagnosis of persistent vegetative state, before a necropsy showed that she had a thrombosis in her brain stem. She probably had normal higher conscious functions for most, if not all, of that time but was unable to talk or move.
What went wrong? How could such mistakes be made? Despite the recent reports of the multi-society task force on the persistent vegetative state in the United States, and the working group of the Royal College of Physicians in Britain, the programme reports that many hospitals have no set clinical procedures to deal with these patients and often draw up their own methods of assessment. Assessments may be too short and not sufficiently sophisticated to detect any higher conscious functioning. Once the patient is diagnosed as being in a persistent vegetative state, he or she becomes “the coma patient.” There is no hope of recovery, so physiotherapy and rehabilitation programmes are wound down.
At the Schmeider Clinic in Germany, Horizon showed us detailed neuroelectrophysiological tests which apparently allow for a more accurate diagnosis and reduce the chances of error. Living Death implied that, because of their wrong diagnoses, Geoff and Marian could have been allowed to starve to death under the current legislation. But we were told very little about their medical case histories. We cannot be sure if they had the wrong diagnoses because available tests were not used or because the tests had not yet been developed. It is also conceivable that their levels of consciousness had changed over time. Could it be that, for such patients, being conscious but paralysed, blind, and completely dependent on artificial feeding and hydration is more horrifying than the vegetative state and arguably a greater reason to be allowed to die?
The development of medical technology which supports a person after such a devastating event has brought new challenges for researchers trying to unravel the complexities of the brain. If there are really hundreds of misdiagnosed patients languishing on long stay neuro-rehabilitation wards, this programme has highlighted how much we have to learn about them.—NAOMI CRAFT, general practitioner and freelance medical journalist