Clinical condition of quadriplegia, lower cranial nerve palsies, and anarthria with preserved consciousness.
It is difficult to ascertain whether patients with LIS can understand or communicate complex concepts, which makes the assessment of decision-making capacity in LIS very difficult.
If a patient is incorrectly determined to have decision-making capacity when it is actually lacking, then the eye-blinking pattern may wrongly be interpreted as informed communication. On the other hand, if a patient is incorrectly determined to lack decision-making capacity when it is actually present, then the patient’s surrogate may make decisions that may or may not be consistent or inconsistent with the patient’s actual wishes.
It is possible that the patient could be fully aware of decisions made on their behalf, which would add further emotional and psychological stress if a decision is counter to the patient’s wishes.
It is well known that patients with LIS can retain their cognitive abilities and recover enough function to be able to communicate. Not all patients with LIS, however, regain full consciousness, and the rate of recovery of consciousness is hard to predict. If the patient neither has an advance directive nor has discussed such a scenario with family or friends, this leaves the patient’s family and the intensive care unit (ICU) team with the dilemma of deciding how long to continue ICU treatment while waiting for communication capacity to return.
Furthermore, even if the ability to communicate is established, it is especially challenging to determine comprehension and decision-making capacity when the ability to communicate is limited to eye blinking or eye movements.
There is evidence to suggest that the recovery of communication capacity takes months, which may mean that decisions to withdraw life-sustaining therapies should be delayed, especially if the goal is to allow the patient the opportunity to participate in the decision.
Adapted from Zaidat O., Kalia J. Ethical Perspectives in Neurology. Continuum Lifelong Learning Neurol 2008;14(6):137-140. Internet. Accessed January 12, 2016.