Practical and Ethical Considerations in Consciousness Restoration

By Tabitha Moses

Tabitha Moses is a second year MD/PhD (Translational Neuro-science) Candidate at Wayne State University School of Medicine. She earned a BA in Cognitive Science and Philosophy and an MS in Biotechnology from The Johns Hopkins University. Her research focuses on substance use, mental illness, and emerging neurotechnologies. Her current interests in neuroethics include the concepts of treatment and enhancement and how these relate to our use of new technologies as well as how we define disability.

What does it mean to be conscious? In Arthur Caplan’s plenary session at the 2017 International Neuroethics Society annual meeting (Neuromodulation of the Dead, Persistent Vegetative State, and Minimally Conscious), he explored this question and how the answers may impact research and medicine. 

Concerns about the capacity for consent and what defines a true consent demand conversation. Recently, for instance, the widespread story of a man with a do not resuscitate tattoo sparked discussion about ways in which a person is able to provide consent when unconscious. This is a hard question to answer, and first we must understand the types of consciousness and how they are currently defined. Brain death is an irreversible, total loss of brain function with a complete loss of consciousness and reflexive behavior (1). The vegetative state (also referred to as unresponsive wakefulness syndrome (2) is described as a state wherein the person is not brain dead but also does not demonstrate any awareness. People who are minimally conscious may appear to be in a vegetative state but, when tested, demonstrate an awareness of self and others. Minimally conscious states are the basis for the recent discoveries of communication through MRI with people who had been thought to be in vegetative states (3,4). To define full consciousness is perhaps the most difficult. It is a topic that has been long-debated by philosophers and scientists; however, in medicine, to be fully conscious is most frequently defined as to be aware of oneself, one’s surroundings, and to have the ability to respond to stimuli (5). This is often measured in healthcare settings using the Glasgow Coma Scale (GCS), which rates patients on eye opening, motor responsiveness, and verbal responsiveness. Based on our present definitions and understanding, while brain death is currently a permanent, irreparable state, it is possible for people who are in a vegetative state to transition into a higher level of consciousness (6). 

Image courtesy of Pixabay.

We do not have a good way to measure consciousness objectively (7). Caplan argued that until we can understand both the science and the ethics of this problem, we should not move forward with consciousness-altering technologies such as Deep Brain Stimulation (DBS) and other emerging technologies. 

New research is aiming to bring consciousness back to those who were once viewed as brain-dead, but what does this really mean? These technologies are currently unable to restore an unconscious person’s former self; rather, they transition the person into a minimally-conscious state where they are then fully aware of their functional losses. Caplan provided the example of Guillaume T (GT), a man who was recently brought out of a 20-year vegetative state through vagus nerve stimulation (8). Although this story made headlines, it was not the medical miracle that most assumed. After the procedure, GT was minimally conscious, able to move his eyes on command and lift his head, but otherwise completely trapped. Having regained a degree of awareness from having none, he died two weeks later. For Caplan, this is one of the most egregious acts in the history of research. This is an instance where success was worse than failure. 

Caplan also addressed the issue of consent in consciousness research. This concern is becoming increasingly real, as one company is now claiming to offer a way to reverse brain death (9). Given the many risks of attempting to alter consciousness in this way (most notably, that of being trapped in a minimally conscious state), we must develop a new understanding of who can consent for these trials and treatments and of who is responsible for the outcome. The brain-dead patient clearly cannot provide consent, and without good definitions and measurements of consciousness, it is hard to even conceive of what it would mean to provide families with truly informed consent. A family told that their loved one may regain consciousness is likely to imagine a far different type of consciousness than the minimally conscious state that the researcher envisions. 

So, what happens next? If the research works, a patient may now be in a state of full awareness but still necessitate full-time, total care. The family, who might have once been content with withdrawing treatment from a person who was considered to have no consciousness, would now likely be unable to do so. The resultant emotional and financial burden to both patient and family would be astronomical. 

Image courtesy of Wikimedia Commons.

Caplan reminded us that our understanding of personhood and identity will also have to change. Currently, a human subject in research is a living person. If we are to include those declared brain dead in research with the intent of reviving their consciousness, we need to consider how this impacts our understanding of a human subject. Furthermore, we must consider the potential destruction of personhood. By altering the brain in such a significant manner, we are changing a person’s identity and we do not currently know the ethical or practical impacts of these changes. 

Making meaningful progress with these technologies will hinge on the many ethical considerations Caplan outlined. Researchers will need to be aware of the risks of providing false hope; they will also need to provide greater clarity about the definitions of consciousness and their expectations for the intervention. There would need to be strict regulations as to who can carry out this type of work as well as clear definitions regarding what constitutes failure and where liability falls for failures. This work may provide a novel opportunity for a new kind of advance directive for consciousness research after brain death. This would allow the patient herself the ability to decide whether or not to be included in these studies at a time when she can be fully informed about the potential implications. Finally, there need to be clear media policies for this type of work, and scientists must speak out against the bad science in this field so that patients are not misled into paying for treatments that may have catastrophic outcomes. These are just a few of many concerns that need substantial consideration before we, as a scientific community, strive to make greater headway in the field of consciousness research. 

References 

1. Goila A, Pawar M. The diagnosis of brain death. Indian J Crit Care Med [Internet]. 2009;13(1):7. Available from: http://www.ijccm.org/text.asp?2009/13/1/7/53108 

2. Laureys S, Celesia GG, Cohadon F, Lavrijsen J, León-Carrión J, Sannita WG, et al. Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Med [Internet]. BioMed Central; 2010 Dec 1 [cited 2018 Jan 14];8(1):68. Available from: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-8-68 

3. Monti MM, Vanhaudenhuyse A, Coleman MR, Boly M, Pickard JD, Tshibanda L, et al. Willful modulation of brain activity in disorders of consciousness. N Engl J Med [Internet]. 2010 Feb 18;362(7):579–89. Available from: http://www.ncbi.nlm.nih.gov/pubmed/20130250 

4. Fiacconi CM, Owen AM. Using facial electromyography to detect preserved emotional processing in disorders of consciousness: A proof-of-principle study. Clin Neurophysiol [Internet]. 2016 Sep;127(9):3000–6. Available from: http://linkinghub.elsevier.com/retrieve/pii/S1388245716304357 

5. Tindall SC. Level of Consciousness. In: Hall WD, Hurst JW, Walker H, editors. Clinical Methods: The History, Physical, and Laboratory Examinations [Internet]. 3rd ed. Boston: Butterworths; 1990. Available from: https://www.ncbi.nlm.nih.gov/books/NBK380/ 

6. Tomaiuolo F, Cecchetti L, Gibson RM, Logi F, Owen AM, Malasoma F, et al. Progression from Vegetative to Minimally Conscious State Is Associated with Changes in Brain Neural Response to Passive Tasks: A Longitudinal Single-Case Functional MRI Study. J Int Neuropsychol Soc [Internet]. 2016 Jul 6;22(6):620–30. Available from: http://www.journals.cambridge.org/abstract_S1355617716000485 

7. Giacino JT, Fins JJ, Laureys S, Schiff ND. Disorders of consciousness after acquired brain injury: the state of the science. Nat Rev Neurol [Internet]. 2014 Jan 28;10(2):99–114. Available from: http://www.nature.com/doifinder/10.1038/nrneurol.2013.279 

8. Corazzol M, Lio G, Lefevre A, Deiana G, Tell L, André-Obadia N, et al. Restoring consciousness with vagus nerve stimulation. Curr Biol [Internet]. 2017 Sep;27(18):R994–6. Available from: http://linkinghub.elsevier.com/retrieve/pii/S0960982217309648 

9. Johnson LSM. Reversing Brain Death: An Immodest Proposal [Internet]. Impact Ethics. 2016 [cited 2018 Jan 14]. Available from: https://impactethics.ca/2016/05/24/reversing-brain-death-an-immodest-proposal/ 

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Moses, T. (2018). Practical and Ethical Considerations in Consciousness Restoration. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/03/practical-and-ethical-considerations-in.html