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Withdrawal of Life-Sustaining Treatments in Perceived Devastating Brain Injury: The Key Role of Uncertainty

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Abstract

Background

Withdrawal of life-sustaining treatment (WOLST) is the leading proximate cause of death in patients with perceived devastating brain injury (PDBI). There are reasons to believe that a potentially significant proportion of WOLST decisions, in this setting, are premature and guided by a number of assumptions that falsely confer a sense of certainty.

Method

This manuscript proposes that these assumptions face serious challenges, and that we should replace unwarranted certainty with an appreciation for the great degree of multi-dimensional uncertainty involved. The article proceeds by offering a taxonomy of uncertainty in PDBI and explores the key role that uncertainty as a cognitive state, may play into how WOLST decisions are reached.

Conclusion

In order to properly share decision-making with families and surrogates of patients with PDBI, we will have to acknowledge, understand, and be able to communicate the great degree of uncertainty involved.

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Notes

  1. This definition of PDBI is inspired by, yet differs from, recent definitions provided by the Neurocritical Care Society [8], and by the Joint Professional Standards Committee of Faculty of Intensive Care Medicine in the UK [9]. The differences with these definitions are that they (a) do not explicitly include surrogates in the perceiving end, (b) make no direct reference to quality of survival as a consideration for WOLST, and (c) the UK definition focuses on decision making at hospital admission and not during intensive care. As an aside, and with an eye on what follows, note the time windows these guidelines suggest for aggressive care before consideration of WOLST; NCS recommends 72 h and the UK guideline 24–48 h. These time windows could be criticized for their lack of patient-specificity, and for arguably being, overall, on the shorter side. Nevertheless, they are likely motivated by a sense of urgency to limit supra-early WOLST.

  2. “To say that a kind is natural is to say that it corresponds to a grouping that reflects the structure of the natural world rather than the interests and actions of human beings.” [Bird, Alexander and Tobin, Emma, "Natural Kinds", The Stanford Encyclopedia of Philosophy (Spring 2018 Edition), Edward N. Zalta (ed.)].

  3. Thick concepts are concepts that carry evaluative and normative connotations and are not merely descriptive. The designation “thick concept” originates in Bernard Williams’s Ethics and the Limits of Philosophy [26].

  4. Bayne et al. [29], consider a whole range of possible aspects that might be impaired in DOC. These include attention, different kinds of conscious content, global features like bandwidth, and accessibility of contents. They further suggest that the overall level of consciousness might be aspect-dependent—a patient might count as VS if tested on one aspect and MCS if tested on a different one. Naccache proposes changing the MCS to CMS (cortically mediated state), and creating eight categories including the source of evidence (e.g. behavioral, neuroimaging).

  5. Biases can affect shared-decision making by distorting the understanding of the nature of a certain choice or decision and the foreseeable consequences. Examples of potentially prevalent biases in cases of PDBI patients include a. Impact: a failure to anticipate adaptation to a new state, relates with the disability paradox (notice that it is a paradox only because the starting point is biased); b. Gain framing: reaction to a particular choice differs depending on how it is presented; e.g. as a loss or as a gain. Think of discussions where the same course of action (or intervention) is presented with an emphasis on saving life vs. an emphasis on the avoidance of survival with unacceptable quality; c. Optimism bias: inaccurate interpretations of physicians’ prognostications by surrogates have been shown to arise partly from optimistic biases rather than simply from misunderstandings [46].

  6. The concern here is the involvement of an implicit bias, or an “alief”; what Gendler explains as automatically activated clusters of representations, feelings, and behaviors. So while the belief that this patient has brain injury does not have to be necessarily fixed to any particular feeling (apart from heightened attention to her care), an alief will have content like, “Brain injured! Horrible outcome! Avoid!” Gendler writes, that to have an alief, is to a reasonable approximation, to have an innate or habitual propensity to respond to an apparent stimulus in a particular way. It is to be in a mental state that is… associative, automatic and arational. As a class, aliefs are developmentally and conceptually antecedent to other cognitive attitudes, and are also affect-laden and action-generating [52, 53].

  7. Consider for example an influential philosophical position by Jeff McMahan developed in his 2002 book, The Ethics of Killing [54]. McMahan holds that, in order to be considered a moral equal, one has to be a person, and to be a person in the relevant sense means having “a mental life of a certain order of complexity and sophistication”. Complexity and sophistication are measured in terms of psychological capacities, most importantly (according to McMahan) autonomy (presupposing self-consciousness and rationality). Adopting such a view, and depending how high one sets the bar in terms of cognitive sophistication, it is easy to see that there may be significant metaphysical and moral implications for patients with PDBI and DOC.

  8. Uncertainty appraised as danger is not necessarily accompanied by an affective state of anxiety or emotional pressure. It could also be based on a strict probabilistic estimation of a projected poor outcome (however poor is defined by the people considering treatment alternatives) that is to be avoided. I would like to thank Sunil Kothari who pressed me to clarify this point.

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Acknowledgements

This paper was greatly improved by the careful comments, corrections, and advice given to me by L. Syd M Johnson and Sunil Kothari, to whom I am most grateful. For helpful discussion of various parts of this paper, I would like to thank audiences at the Disorders of Consciousness Program of the Texas Institute for Rehabilitation and Research (TIRR) Memorial Hermann, and at the Neuroscience in Intensive Care International Symposium (NICIS) 2018.

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Authors and Affiliations

  1. Division of Neurocritical Care, Departments of Neurology, and Neurosurgery, University of Chicago, Chicago, IL, USA

    Christos Lazaridis

  2. The University of Chicago Medicine, 5841 S. Maryland Avenue, Chicago, IL, 60637, USA

    Christos Lazaridis

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Dr. Lazaridis conceived the article topic, wrote and revised the draft.

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Correspondence to Christos Lazaridis.

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Lazaridis, C. Withdrawal of Life-Sustaining Treatments in Perceived Devastating Brain Injury: The Key Role of Uncertainty. Neurocrit Care 30, 33–41 (2019). https://doi.org/10.1007/s12028-018-0595-8

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