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New Scientist (June 29,2019): The Forgotten Patients
THE faces of five people stare down at neurologist Nicholas Schiff from the wall of his office. These are pictures of people who appear to be in a vegetative state, but are in fact conscious. He stuck them up to remind him, he says, that they are still out there, and that doctors aren’t doing anything for them.
The sentiment is right. These people’s basic needs are being catered for, but there is little more we can do to help. And now the nightmare has got worse: a 10-year investigation has revealed the extent of such “covert consciousness” in people with brain damage, many of whom may be aware (see page 38).
Nobody can fault the efforts of Schiff and his colleagues to identify such people. But unfortunately, it tends to be very expensive to enter those with disorders of consciousness into clinical trials investigating ways to interact with them. They need round-the-clock care, rehabilitation, brain imaging and longterm follow-up. Studies often need to last six months or more to identify changes in brain health or drug efficacy.
Few agencies can, or will, fund this work. However, just knowing that covert consciousness isn’t rare can make a huge difference to patients’ prognosis. And while we wait for the technology that will allow them to communicate to catch up with this revelation, it may be the simplest things that make the biggest difference.
We have learned from those who are locked in (fully conscious but unable to move much more than their eyes) that they can be happy and have a greater sense of well-being than people who aren’t locked in. But this is only the case when they get the chance to participate in the world, through the support and interaction of those around them.
“Brain damaged patients are the forgotten patients,” says Geert Van Gelder, whose wife Evelyne is in a vegetative state in Belgium. We may not be able to wake every one of them, but improved rehab, nursing care and contact with friends and family is something we can do to make sure they are remembered every day. ❚
|New Scientist (June 29,2019): The Forgotten Patients|