In addition, members of the paramedical sector are more inclined to advocate stopping treatment for patients deemed to feel pain than doctors are (64% and 33% against 56% and 27%). “Several theories can explain this assessment, such as the nature of the training received and sensitivity, the fact that paramedical staffs are closer to the patients and spend more time at their bedside seems to play a major role nonetheless,” says Athena Demertzi. However, profession has virtually no effect on decisions concerning the end-of-life of patients that are believed to be free from pain.

Biopsychosocial model

Overall, the results of the survey highlight the fact that end-of-life decisions for patients who are in an altered state of consciousness are often rooted in uncertainty because they can be dictated, at least to a degree, by religious beliefs or the education that the health professionals concerned have received. “We would prefer if these decisions were based more on medical evidence”, indicates Steven Laureys. In order to contribute to the achievement of this objective, better information on the part of the treating professionals is necessary concerning the distinction between the vegetative and minimally conscious states. With regard to the importance attributed to the notion of pain by health professionals in opinions about end-of-life decisions, it seems vital to refine diagnosis relating to nociceptive feeling by patients. A scale such as the Nociception Coma Scale-Revised contributes to this. The FMRI scan in resting state will also make a valuable contribution as exemplified in work currently being undertaken by Athena Demertzi within the Coma Science Group, which shows a correlation between the Nociception Coma Scale and the activity of the pain network in resting conditions (i.e., in the absence of external stimulus).

“However, in the areas of pain and consciousness, the dichotomous approach to brain-damaged patients must be abandoned and it must be acknowledged that we are faced with a spectrum characterized by progressive transitions. Studies carried out to date have been group studies. Moreover, the technique does not guarantee that there will be no erroneous results at an individual level - "false positives" or "false negatives", explains Steven Laureys. 

The challenge at the moment is to define a decision tree which would be the result of a multidisciplinary and multimodal approach. Athena Demertzi is working towards the design of this approach in the context of her postdoctoral project at the FNRS. Indeed, she is working on the design of a biopsychological model of pain and emotions (positive and negative) in patients in a state of altered consciousness. Three main aspects need to be combined: the “bio” aspect, which is made up essentially of all the data supplied by neuroimaging and electrophysiology; the “psycho” aspect, underpinned by psychcognitive, behavioral and emotional data gathered during clinical examinations (notably thanks to the implementation of appropriate scales such as the Nociception Coma Scale-Revised and the coma recovery scale); the “social” aspect, principally centred on the way the family and the treating personnel perceive the situation.

In a recent article published in Lancet Neurology⁽⁴⁾, Steven Laureys and his colleagues on the other side of the Atlantic consider that the integration of all the data gathered from the three areas should lead to a better treatment of the patients (among other things we should consider the treatment of pain) and facilitate end-of-life decisions. This requires an improvement of knowledge in all the areas mentioned. Therefore how can we quantify the residual well-being of the patient? How can we better determine the functional neuroanatomy of pain? How can we achieve a fine understanding of the socio-medical reality? This is a huge challenge especially when it concerns individuals who are suspended between life and death.

(4) Jox RJ, Bernat JL, Laureys S, Racine E., Aug;11(8):732-8. Disorders of consciousness: responding to requests for novel diagnostic and therapeutic interventions (2012), Lancet Neurology, Aug;11(8):732-8.