The Evolving Science of Disorders of Consciousness Calls for an Inclusive Framework for Healthcare Resource Allocation
In their target article, Peterson, Aas, and Wasserman (2021) raise the point that the allocation of healthcare resources to patients with disorders of consciousness (DOC) is currently difficult to justify based on the consequentialist principles of cost effectiveness analysis. Cost effectiveness analysis weighs the monetary cost of healthcare resources against the benefits they are estimated to deliver, calculated using measures of disease burden such as quality adjusted life years (QALY) DOC are currently expensive to treat and are likely to fare poorly in terms of cost effectiveness and therefore have a significant opportunity cost. However, the authors (Peterson et al. 2021) highlight potential concerns with the methodological soundness of applying cost effectiveness frameworks such as QALY to individuals with DOC due to our lack of knowledge about the nature of first person experience and quality of life in these patients. I will raise additional concerns about the use of cost effectiveness models to inform resource allocation decisions concerning this patient population, arguing that they are insensitive to certain contextual factors that reduce the present cost effectiveness of DOC medicine. These include fundamental scientific uncertainties about the neural mechanisms of consciousness that underlie the core clinical dilemmas faced in DOC medicine, and factors related to the relatively short history and extent of research into DOC relative to many other medical conditions. Cost effectiveness frameworks are likely to encounter serious limitations in drawing direct comparisons of health utility across diverse clinical populations. As Peterson et al. (2021) suggest, it may be necessary to consider other principles that could guide resource allocation decisions involving DOC, such as ensuring equality of opportunity for a certain standard of medical care. Patients with DOC have profound neurological disability and require long periods of hospitalization and full time care, which often includes a range of lifesustaining treatments. However, it is well established that some DOC patients can have sophisticated forms of conscious experience (Kondziella et al. 2016) and that meaningful recovery from these conditions is possible (Edlow et al. 2021) Methods for assessing and treating these patients in hope of improving their welfare and promoting recovery, beyond simply aiming to sustain life, can involve diagnostic neuroimaging tests, multidimensional rehabilitation, and other novel therapeutic interventions, such as pharmacological agents or brain stimulation (Thibaut et al. 2019) Management and treatment of these conditions is often resource intensive and costly. However, the high cost of DOC medicine is partly due to the fact that DOC science grapples with a fundamental epistemic obstacle: our lack of scientific knowledge about the neural correlates of consciousness (NCCs) The neural correlates of consciousness are considered one of the greatest unsolved mysteries facing modern science (Koch et al. 2016) We do not understand how or which physical processes in the brain give rise to consciousness. In the majority of DOC patients, we also lack access to information about consciousness via first person reports. As a result, we face an apparent scientific impasse where little can be inferred with certainty about subjective experience or quality of life in DOC patients and where, as Peterson et al. (2021)
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