Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state

Abstract

The purpose of the study is to learn more about perceptions of consciousness and its significance from family members of patients with disorders of consciousness, specifically from family member of patients in a vegetative state or minimally conscious state. 1) Can you briefly describe what brought your loved one into the TIRR program? PERCEPTIONS OF CONSCIOUSNESS: 2) Your loved one is/was in the Disorders of Consciousness program. How do you think about consciousness? What does consciousness mean to you? a. It can be difficult to put into words what consciousness is. Are there any images or pictures that come to mind when thinking about consciousness? b. If providing behavioral evidence (e.g. "following commands", etc.) prompt with "but what does that behavior mean?"3) If a minimally conscious patient is conscious enough to "experience" or be "aware," do you believe they are also able to have deeper thoughts and feelings, to formulate goals and experience achievement, the ability to access memories? a. Do you think your loved one is conscious enough to sense him/herself getting better/worse? 4) If your loved one is only able to experience things but not have deeper or more complicated thoughts and goals, does that matter to you in terms of how you approach them (probe: or how others should approach them)?5) Do you think someone who is unconscious is still "here" in some way? In what way?a. If no: What does someone need to do or have, in order to be considered still "here" as a "person"?b. If yes: How is being "here" as a "person" different from being conscious? 6) How conscious do you believe your loved one is? On a scale of 1 to 5 (1 being unconscious and 5 being fully conscious)?

Disambiguating Consciousness in Clinical Settings

“…Although this type of consciousness seems to be more often informally intuited by families and clinicians, increasingly novel neurotechnologies may be used to detect consciousness beyond overt behavioral expression. 17,23,24…”

“…Although this type of consciousness seems to be more often informally intuited by families and clinicians, increasingly novel neurotechnologies may be used to detect consciousness beyond overt behavioral expression. 17,23,24 In these disambiguated terms, by virtue of prevailing diagnostic approaches that prioritize behavioral markers of consciousness, clinicians often approach detection of consciousness and prediction of recovery by focusing on testing for behavioral consciousness while families may presume an underlying nonbehavioral phenomenal consciousness in patients who are behaviorally unexpressive. Thus, when a clinician determines that a patient "lacks consciousness" (i.e., is in coma or vegetative state/unresponsive wakefulness syndrome) after performing a series of tests for behavioral consciousness without disambiguating the kind of consciousness queried, it may conflict with a family's belief that the patient possesses nonbehavioral phenomenal consciousness, potentially magnifying skepticism about the reliability of the clinical assessment.…”

“…Surrogate decision-makers who opt to continue life-sustaining treatment may do so because they believe that a patient who possesses nonbehavioral phenomenal consciousness will be motivated to regain behavioral consciousness. 17 By contrast, those who decide to withdraw life-sustaining treatment might do so because their loved one would "not want to live like this" or due to ascriptions of low quality of life, thus opting to withdraw or withhold treatment because they believe that prolonged nonbehavioral phenomenal consciousness without behavioral consciousness is undesirable and not necessarily because they believe that their loved one lacks consciousness. 29 Either decision may be animated by persistent beliefs in a patient's underlying nonbehavioral phenomenal consciousness, which could be supported by families spending more time observing and providing salient stimulation for the patient.…”

“…29 Either decision may be animated by persistent beliefs in a patient's underlying nonbehavioral phenomenal consciousness, which could be supported by families spending more time observing and providing salient stimulation for the patient. 17,30 Therefore, it may be prudent for clinicians not to render recommendations about life-sustaining treatment based solely on assessments of behavioral consciousness, but to further explicate how this affects their valuation of the patient's nonbehavioral phenomenal consciousness or other aspects of consciousness as construed by family members. Clinicians who shift decision-making conversations away from the behavior-centered paradigm can validate a family's intuitive considerations about the patient's nonbehavioral phenomenal consciousness and seriously consider their perspectives on a patient's quality of life as a nonbehavioral, conscious being.…”

“…By contrast, clinicians may believe that living in minimally conscious state is worse than having no consciousness because a patient could live with continuous suffering. 17 This brings into question the extent to which clinicians and family members project their own conscious experiences to evaluate another's phenomenal state of mind and the possibility of pessimistic biases in such projections. Indeed, individuals with disabilities, including neurologic conditions such as spinal cord injuries and locked-in syndrome, often rate the quality of their lives substantially higher than nondisabled individuals' expectations of their ratings, a phenomenon known as the disability paradox.…”