New tools have confirmed high rates of misdiagnosis of patients with chronic disorders of consciousness, such as the vegetative state. An increasing number of patients' families wish to use these novel techniques for diagnosis, prognosis, and treatment. An international team of researchers, including Dr. Éric Racine, researcher at the IRCM, analyzed the clinical, social and ethical issues that clinicians are now facing. Their article is published in the August edition of The Lancet Neurology.

"Patients with disorders of consciousness have traditionally been regarded as unaware by definition, but findings from recent clinical studies have revealed astounding cases of awareness despite clinical unresponsiveness," explains Dr. Racine, a Montréal neuroethics specialist.

Severe brain injury can leave patients with chronic disorders of consciousness, which are medical conditions that inhibit consciousness. Patients thus have severe motor and cognitive impairments, remain fully dependent on others for all activities of daily living, and have no or very limited means to functionally communicate their thoughts or wishes, depending on their state.

Even with a careful neurological assessment of these types of disorders, some signs of awareness can elude the clinician because the clinical diagnosis relies on the observation of motor signs of awareness, which can be very subtle and fluctuate over time.

New technological developments can now measure brain function both in resting states and in response to simple commands, independent of muscle function, which could help establish a more accurate diagnosis. As a result, diagnostic classifications have been revised and prognostic knowledge is improving. For the first time, therapeutic studies have recently shown the effects of treatment on the improvement of patient responsiveness.

"The medical decision to stop or continue rehabilitation, or to transfer a patient to a long-term care facility can be hard to accept for the family, but one of the most difficult treatment decisions by family members remains whether to continue life-sustaining therapy or to discontinue it and only provide palliative care," says Dr. Racine.

Media coverage of disorders of consciousness has increased and information on the subject is increasingly available to the public. Clinicians such as neurologists, rehabilitation specialists, family doctors, and nurses must answer more requests from patients' family members for novel diagnostic and therapeutic procedures.

"Clinicians therefore need to be prepared to discuss disorders of consciousness with ethical sensitivity, especially considering that the new procedures remain investigational," adds Dr. Racine. "They must be aware of the level of evidence supporting them and of the unavoidable ethical and social issues involved in responding to requests from patients' family members."

Éric Racine's research is funded through a New Investigator Award and the Trilateral Neuroethics Initiative of the Canadian Institutes for Health Research (CIHR). The article's co-authors include Ralf J Jox from the University of Munich (Germany), James L. Bernat from Dartmouth Medical School (USA), and Steven Laureys from the Université de Liège (Belgium).