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The BCI application by DOC patients in-between claim rights and liberty rights

Recent neuroimaging findings have brought paradigmatic results where, with certainty, the decades-presumed generalisation of “hopelessness” related to patients with Disorder of Consciousness (DOC) are slowly vanishing from the scientific and bioethical dictionary. These recent studies have presented the inadequacy of the current bedside tools for assessing the level of awareness and consciousness, demonstrating the worrisome high percentage of misdiagnosis between the vegetative state (VS), recently known as unresponsive wakefulness syndrome (UWS), and minimally conscious state (MCS). Furthermore, not only was the discovering of the misdiagnosis revolutionary, but so too was the establishment of limited communication with patients in MCS. However, the use of neuroimaging techniques (such as PET, fMRI) would encounter some difficulties in application such as high costs, being inaccessible to everyone, and not working in every case. Another more adequate approach in the form of Brain-Computer Interfaces shows great potential, specifically qEEG, and demonstrated much greater sensitivity 90-95% and higher specificity 80-95% in detection of consciousness comparing to neuroimaging techniques. The high rate of misdiagnosis represents an ethical issue, which might lead to the patient emotionally suffering from lack of personal attention or demanding different kinds of pain alleviation by the palliative care process due to the poor diagnosis and prognosis and as a consequence leading to the termination of life- sustaining care. Some authors encouraging the old praxis in front of DOC ask themselves: even when some patients regain consciousness without the ability to communicate, would it be the real goal of the treatment? Considering that such state is even worse than being in UWS, does not this kind of life deserve to be terminated? These and other considerations lay on the ableism prejudices, where third person values are involved. Despite such considerations in front of these patients, the majority would agree that DOC patients deserve better and accurate diagnosis, but the scientific community has become aware that diagnosis and prognostication among these patients is veiled with uncertainty. While these transient states between UWS and MCS can take longer than one year the questions emerges from these findings, what are we obliged to do in front of them? Are we obliged to extend the period of waiting for these patients to regain some cover consciousness? Do these patients with cover consciousness need to be engaged, and how much, in the treatment decision making? All these questions and much more have been posed recently by scientists and ethicists to themselves. I would argue that the distinction between claim rights and liberty rights would be essential to answer these questions properly. Where the right on accurate diagnosis, on recovery, on adequate care, and especially to be involved, if capable, in decision making belongs not to the liberty rights but to the claim rights which entail certain duties and responsibilities from physicians, healthcare staff, social insurances, and above all society. For establishing the above mentioned rights the development and application of BCI systems might be a reinforcement of the claim rights of these persons. Therefore, the question of DOC patients exceeds the local clinical setting and becomes a question of humanitarian solidarity in front of the most vulnerable.

human rights, clinical medical ethics, disorders of consciousness

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