A disorder of consciousness is a state where consciousness has been affected by devastating damage to the brain. The diagnosis and health care of patients suffering from these disorders raise several clinical as well as ethical issues. And researchers are still looking for ways to solve them. Recent guidelines, European and American, offer important recommendations for improving both diagnosis and treatment for this patients group. But according to Michele Farisco and Arleen Salles, there is still some challenges to overcome. Ethical as well as practical.
The European Academy of Neurology and its American counterpart recently published guidelines on treating and diagnosing disorders of consciousness. The authors of a recently published Journal of Head Trauma Rehabilitation paper state that, while commendable, these guidelines raise a number of questions related to their practical implementation.
“We have not seen such an ambitious international attempt to provide clear, standardised recommendations to clinicians working with these patients before. These new guidelines offer timely, updated and wide-ranging recommendations for diagnosis, prognosis and clinical care. They are very impressive but also places demands on the technical equipment and corresponding expertise required to be able to act on them. If one or the other is missing, the reliability, practical value and ethical impact of these recommendations is diminished,” says Michele Farisco, Post-doc researcher at the Centre for Research Ethics and Bioethics of Uppsala University within the Human Brain Project, one of the authors of the paper.
Michele Farisco and co-author Arleen Salles suggest addressing some of the practical and normative barriers to the implementation of the guidelines by taking a strategic approach focusing on responsibility. They introduce a model of “distributed responsibility” based on a distributed multilevel understanding of responsibility, in order to better understand and address barriers to implementation.
“Both the implementation and operationalisation of some of these recommendations would benefit from more reflection on responsibility and what it means. As well as from the use of a distributed responsibility model. Identifying who is responsible for what at what stage of implementing the guidelines is key to making recommendations useful to clinicians in their everyday practice. Maximising the usefulness of the guidelines for the benefit of patients,” Michele Farisco concludes.
By Anna Holm
Farisco M, Salles A, American and European Guidelines on Disorders of Consciousness: Ethical Challenges of Implementation, Journal of Head Trauma Rehabilitation: April 13, 2022, DOI: 10.1097/HTR.0000000000000776