Abstract
Best practice guidelines have advanced severe traumatic brain injury (TBI) care; however, there is little that currently informs goals of care decisions and processes despite their importance and frequency. Panelists from the
Introduction
Traumatic brain injury (TBI) is an important cause of death and disability worldwide. 1 There has been slower advancement in TBI care than in other areas of medicine and targeted therapeutics for central nervous system (CNS) injury have yet to be realized. 2 Best practice evidence-based guidelines 3 –6 have been impactful, however, and have been associated with a 50% reduction in mortality from severe TBI over the last 27 years. 7,8
A problem of at least equal importance to determining best care in TBI is the decision of when to apply best care and when to instead limit care, allowing a patient's death to occur. 9,10 Despite the frequency and the paramount importance of these decisions, very little research and few resources are available to guide clinicians and families through relevant decision making. 11 It is unclear how much responsiblity for the decision making truly falls to physicians rather than to substitute decision makers. 12,13 There is substantial variation in how different clinicians make and manage these decisions.
Prognostic calculators have also been an important advance for TBI care, but their predictions are as yet imprecise for individual patients. 14,15 As the accuracy and precision of prognostic calculators improve over time, it is possible that they could play a greater role in decisions to limit care. Inappropriate therapeutic nihilism is a concern in TBI care, as it can lead to patients being deprived of a reasonable chance of an acceptable outcome. 16,17 We consider inappropriate therapeutic nihilism to be an overly pessimistic view of prognosis which would not be shared by a majority of physicians or the patient if informed by a truly accurate assessment of prognosis. As they advance, objective predictions from prognostic calculators could be used to guard against inappropriate therapeutic nihilism. 11
The
Methods
We constructed a 24 question survey within SurveyMonkey (Supplementary Text). Questions queried use of prognostic calculators, variability in and responsibility for withdrawal of care decisions, and acceptability of neurological outcomes, as well as putative means of improving withdrawal of care decisions. All questions were closed, but each question provided respondents with the opportunity for free text comment. The survey was made available to SIBICC panelists on December 9, 2021, and was closed on December 25, 2021. During this time, non-respondents were provided with up to two reminders encouraging survey completion. Respondents' names were not associated with their responses to facilitate blinded analysis.
Questions 21–24 considered scenarios of death and undesirably poor outcomes. They also considered existing prognostic calculators as well as a theoretical ideal severe TBI prognostic calculator. Panelists were told that the ideal prognostic calculator was constructed from an extremely large population and that it performs extremely well in repeated large external validation studies. Moreover, the ideal prognostic calculator provides highly accurate calculations for individual patients. Panelists were also asked their opinions on a nihilism guard. 11 With respect to a nihilism guard, panelists were told that: “Prognostic calculators could be used to create a ‘nihilism guard’ which reduces the impact of inappropriate therapeutic nihilism in severe traumatic brain injury. This would mean that care of a patient could not be withdrawn immediately or unilaterally when a sufficiently positive outcome is predicted. Because of the importance of such a medical decision, involvement of a second physician or perhaps a panel would be required prior to proceeding with withdrawal of care. This would help ensure that such a decision is being made carefully – similarly to the need for two physicians to declare brain death.”
Statistical analysis
Survey results were graphed using Microsoft Excel. Excel was also used to perform χ 2 analyses comparing observed responses to those expected with indiscriminate responses. For questions 21–24, analysis of variance (ANOVA) was used to assess for differences among the four groups (Microsoft Excel).
Results
The SIBICC panelists consisted of a diverse group of 42 physicians and surgeons recognized for their expertise in the care of TBI. 18,19 Panelists were from disciplines including neurosurgery, critical care, trauma surgery, emergency medicine, and anaesthesia. The group exhibited ethnic and gender diversity and hailed from six continents. Forty-one of the 42 SIBICC panelists completed the survey (97.6%). Chi Square analysis performed for questions 1–20 uniformly demonstrated that the answers differed from indiscriminate responses (p < 0.01 in all cases).
Respondents indicated that they rarely performed prognostic calculations for severe TBI patients in routine patient care (Fig 1A); only 7.3% of respondents indicated that they performed prognostic calculations for most or all severe TBI patients. In the provided comments, inaccuracy of current calculators for predicting outcome in individual patients was cited as a reason for this lack of use. Respondents were most likely to use the International Mission on Prognosis and Analysis of Clinical Trials (IMPACT) prognostic calculator 20 (71.8% of responses) if they were to perform such calculations (Fig.1B). Over half of respondents (51.4%, Fig. 1C) indicated that they very rarely shared the results of prognostic calculations with patients' legally authorized representatives or substitute decision makers.

SIBICC panelists' use of prognostic calculators. Blinded survey responses from 41 SIBICC panelists are provided related to the use of prognostic calculators in their practices. The panelists indicated that they infrequently perform prognostic calculations or report the results of prognostic calculations to patients' substitute decision makers. Most investigators indicated they would use the IMPACT prognostic calculator if they were to use one. CRASH, Corticosteroid Randomization After Significant Head Injury Trial; IMPACT, International Mission for Prognosis and Analysis of Clinical Trials in Traumatic Brain Injury; SIBICC,
A number of questions focused on therapeutic nihilism. More than half of respondents (53.7%, Fig. 2A) indicated that they had some concern with inappropriate therapeutic nihilism in their medical center, while 31.7% reported a high level of concern. In comparison, two thirds of respondents (65.9%, Fig. 2B) reported a high level of concern with therapeutic nihilism at other medical centers around the world, and 95.1% of respondents (Fig. 2C) reported being somewhat or strongly troubled by variability in physician judgments about whether a given patient could or should be saved, and which resources should be expended in their care; 78.1% of respondents felt that physicians markedly influence the decisions of substitute decision makers when communicating their perceptions of patient prognosis (Fig. 2D). Overall panelists did not report a high level of concern with having different opinions than other care team members related to prognosis and aggressiveness of care for severe TBI patients (Fig. 2E).

SIBICC panelists' views on nihilism and withdrawal of care decisions. Blinded survey responses from 41 SIBICC panelists are provided related to their experiences with and views on nihilism and withdrawal of care decisions. The majority of respondents indicated that they have some concern with inappropriate therapeutic nihilism at their hospitals (
SIBICC panelists' views were also sought on neurological outcomes; 92.7% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes a good or bad neurological outcome (Fig. 3A). Similarly, 95.1% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes an acceptable chance of achieving a good neurological outcome (Fig. 3C). At least half of respondents felt strongly that efforts to improve consensus on these points would be beneficial (Fig. 3B and D). Panelists felt strongly that the general public should be involved in efforts to better define what constitutes an acceptable outcome (Fig. 3E) and expressed disappointment that prognostic calculators have not been accompanied by more advance related to their use (Fig. 3F).

SIBICC panelists' views on neurological outcomes. Blinded survey responses from 41 SIBICC panelists are provided related to improving withdrawal of care decisions and processes. Most respondents indicated that improving consensus among physicians as to what constitutes an acceptable neurological outcome and an acceptable chance of achieving such an outcome would be desirable (
The SIBICC panelists also opined on how decisions related to the aggressiveness of care could be improved; 68.3% somewhat or strongly agreed that greater consistency in withdrawal of care decisions around the world would be preferable (Fig. 4A), but 95.12% strongly or somewhat agreed that withdrawal of care decisions should be influenced by the patient's culture and local care environment (Fig. 4B). Respondents somewhat agreed that a nihilism guard would be desirable to reduce inappropriate therapeutic nihilism, and indicated that they would implement one if it was convenient to do so (Fig. 4C and D). SIBICC panelists provided diverse responses regarding the utility of a nihilism guard when considering a patient's legally authorized representative's decision-making autonomy (Fig. 4E).

SIBICC panelists' views on how withdrawal of care processes could be improved. Blinded survey responses from 41 SIBICC panelists are provided related to improving withdrawal of care decisions and processes. Respondents favored greater consistency in withdrawal of care decisions around the world (
SIBICC authors also provided their own opinions on what constituted an acceptable neurological outcome and what chance of an unnacceptable outcome would lead them to agree to a withdrawal of care decision. More than 60% of the authors felt that a certain outcome of death, or of an enduring vegetative state or lower severe disability would justify withdrawal of care decisions (Fig. 5A). Only 15.0% of respondents felt that upper severe disability would be a justification for withdrawal of care. Whether an ideal or existing prognostic calculator was considered and whether the predicted outcome was death or an unacceptable outcome, respondents were consistent in selecting predictions between 64% and 69% on average as a threshold at which they would support withdrawal of care decisions (Fig. 5B, ANOVA p = 0.98). Responses for all four conditions were highly variable, however.

SIBICC panelists' views on acceptable outcomes and chances of those outcomes. For (
Discussion
Decision making in patients with devastating TBI falls at the intersection of medicine, culture, religion, and philosophy. Despite the importance of decision making for these patients, medicine currently provides little relevant guidance to clinicians. To help address this gap, we sought the opinions of SIBICC's eminent and diverse TBI experts 18,19 on important issues of care that have been insufficiently studied despite their importance: decisions related to prognostication, aggressiveness/withdrawal of care, and perspectives on nihilism. In this context, these survey data provide a highly novel contribution to the literature. Our results provide a starting point for needed future research and discussion on these topics.
Prognostic calculators
Some consider a vegetative outcome as being less desirable than death. If poor outcomes could be predicted with high accuracy it would help a patient's legally authorized representative to make more informed decisions about whether or not to proceed with aggressive care, and can help to ensure that medical resources are expended on those who will ultimately benefit from them. 11 Several prognostic calculators for TBI have been developed, 14,20 –22 reflecting a significant advance for the field. Although some have been highly validated, they still lack precision and accuracy for individual patients. Many respondents commented that the inaccuracy of current calculators is a key reason for not using them. It is anticipated that the accuracy of these calculators will improve over time and, with this in mind, it is helpful to consider how more accurate prognostic information could be used to benefit patient care in the future.
Defining a bad outcome
A key first step in improving withdrawal of care decisions is deciding what would constitute an undesirable outcome if it was accurately predicted. 9,11 . We surveyed SIBICC panelists with respect to extended Glasgow Outcome Scale 23,24 scores as these are an entrenched and commonly used outcome measure in TBI patients. Although approximately two thirds of the panel felt that an outcome of lower severe disability or worse justified withdrawal of care decisions, it is important that this was not unamimous. Similarly, an approximately two thirds chance of death or an undesirable outcome was consistently identified as mean value at which our panelists felt care could be withdrawn. Although this is a helpful finding that can be further explored in future studies, the marked variability in opinions was perhaps the most important finding. These findings would seem to confirm the panelists' opinion that a lack of consensus currently exists and that efforts to reduce this variability may be beneficial.
In considering the results of this study, it was very important that the survey assessed only the opinions of physicians. Even though our physician panelists were highly diverse with respect to location and specialty of practice (neurosurgery, critical care, emergency medicine, neurology, and anaesthesia) as well as years of experience, other stakeholders might provide different responses to these questions. Future research is needed to better understand these important additional perspectives.
Responsibility for withdrawal of care decisions
Although many would report that decision making following devastating TBI is the responsibility of well-informed substitute decision makers familiar with the wishes of a patient, 12,25 our survey confirms that the relationship between clinicians and decision makers is complex. As our panelists recognize the marked influence that physicians have on aggressiveness of care, it would seem that in many cases physicians are actually the decision makers and that substitute decision makers are limited by the perceptions communicated to them. The inter-relationships of clinicians and substitute decision makers are complex and will require careful consideration in conjunction with any effort to improve or modify decision making. 12,16 Indeed, the notion of therapeutic nihilism and guards against nihilism imply that a significant amount of the responsibility for these critical care decisions lies with clinicians. 17 Better delineation of the roles and responsiblities of clinicians and substitute decision makers will be an important part of improving relevant processes. 10 In addition, cultural, religious, socioeconomic, resource availability, and regional differences in access to trauma care influence the decision for aggressive management versus care withdrawal.
At first it may seem a paradox that our panelists felt that both consistency of care and individualization of care are important. Both are, however, key tenets of modern care that must be balanced. Standardization of best practices has been at the heart of the guidelines movement; guideline implementation for TBI has been repeatedly associated with a 50% reduction in mortality 7,8 and reduced cost of care. 26,27 More recently, personalized medicine has sought to individualize care in the hopes of further improving patient outcomes with tailored therapies. Practically, this may mean that guidelines serve to provided a common base of high-quality care but that care also may be further refined based on specific patient characteristics. These tenets are also harmonized when processes of care are standardized but the decisions made are patient specific.
In a similar spirit, our panelists disagreed that “withdrawal of care decisions should be handled more consistently around the world”; however, their comments indicated that they felt that there would be important benefits to increased standardization. They felt, though, that such standardization was unlikely to be achieved, because of the great diversity in beliefs, values, religions, and financial resources in different parts of the world. As articulated, panelists felt that an effort to standardize processes and principles was desirable but that specific actions and decisions will undoubtedly vary tremendously.
Nihilism guards and ımproving withdrawal of care decision making
The SIBICC panelists feel that there is need to build consensus related to key aspects of decision making for patients with devastating brain injuries. Although prognostic calculators could ultimately help to increase the objectivity of relevant decisions, 11 the panelists felt that these calculators require refinement before they play a substantial role in withdrawal of care decisions. An early application of prognostic calculators could be the development of nihilism guards that would aim to safeguard patients who have a reasonable chance of an acceptable outcome from clinicians with inappropriately poor predictions of their outcome who do not wish to provide the aggressive care needed to achieve the best possible outcome. 11
Given the importance of the determination of brain death, 28,29 the significance of an inaccurate determination and the complexity of the assessment, two independent clinicians are required to independently adjudicate the patient. It seems a paradox that withdrawal of care decisions are subject to much less rigor despite their similarity. As they become more accurate, prognostic calculators could help to make this decision making more objective and could help to guard against inappropriate therapeutic nihilism. A patient who is predicted to have a sufficiently good outcome might require two physicians to sign off on a decision to withdraw care, to help ensure that appropriate and accurate information has been communicated to decision makers. It could also help to identify and guard against concerning motives behind withdrawal of care decisions by substitute decision makers, such as financial gain from an inheritance or life insurance policy, as well as avoidance of the stress and costs inherent to new debility. This concept is at odds with the autonomy of patient's substitute decison makers, however. Notably, the SIBICC panelists did not report strong enthusiasm for this concept.
It is noteworthy that tools can be built into modern electronic medical records, which can make prognostic calculations facile and which could provide a platform for a nihilism guard. 11 Gregory Hawryluk recently reported the development and implementation of a “dotphrase” within Epıc electronic medical record software, which allows users to easily and rapidly perform IMPACT prognostic calculations with relevant patient information that is automatically populated in a heads up display. 11 A nihilism guard could also be implemented whereby withdrawal of care orders would require sign off by two physicians before the orders could be executed. Efforts to define a bad outcome and what constitutes an acceptable chance of achieving a good outcome would of course be fundamental to such a construct.
Ultimately, it is our view that the operational threshold for a nihilism guard should reflect the precision of the prediction model that informs it. In the context of current, imprecise models, we feel that nihilism guards would most sensibly be employed initially where they are most likely to achieve their intended purpose of protecting a patient likely to achieve an acceptable outcome. More precise prediction models could eventually be applied to patients predicted to have less good outcomes. Very importantly, a nihilism guard should serve to mandate caution in making a critical decision. We would not support the converse approach of using outcome predictions to trigger a care limiting decision if such discussion was not otherwise judged to be appropriate.
Although prognostic calculators could ultimately help to increase the objectivity of relevant decisions, the panelists felt that they would require refinement before they play a substantial role in withdrawal of care decisions. Indeed, the current infrequent use of prognostic models reported in our survey is at odds with the implementation of nihilism guards that would require more routine use.
Conclusion
Despite their critical importance to the care of severe TBI patients, the use of prognostic information, therapeutic nihilism, and withdrawal of care processes remain insufficiently informed and subject to marked variability among practitioners. Our survey of the SIBICC panelists who are a diverse group of TBI experts suggests that advances are needed in these areas. The consensus view of SIBICC panelists on what constitutes an acceptable neurological outcome and the chances of achieving such an outcome are particularly valuable findings. Although panelist responses demonstrated marked variability, they provide a starting point for future study, advancement, and consensus building.
Footnotes
Authors' Contributions
G.W.J.H was responsible for study conceptualization; G.W.J.H., B.S., R.S.B., and R.C. were responsible for survey design; all authors were responsible for voting; G.W.J.H and B.S. were responsible for data analysis and statistics; G.W.J.H., B.S., and R.S.B., were responsible for writing of manuscript; all authors were responsible for critical review of manuscript and edits; G.W.J.H., B.S., and R.S.B. were responsible for response to peer reviewers and manuscript revisions; and all authors were responsible for approval of the finalized manuscript.
Funding Information
P.H. is supported by the National Institute for Health and Care Research (NIHR) (Research Professorship, Cambridge BRC, and Global Health Research Group on Neurotrauma), and D.K.M. is an Emeritus Senior Investigator of the National Institute of Health Research (U.K.). We thank our financial supporters who include Adler/Geirsch Attorney at Law, the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Neurotrauma and Critical Care, Bard, the Brain Trauma Foundation, DePuy, Hemedex, Integra, the Neurointensive Care Section of the European Society of Intensive Care Medicine, the Neurosurgical Society of Australasia, Medtronic, Moberg Research, Natus, Neuroptics, Raumedic, Sophysa, Stryker, and Zoll.
Author Disclosure Statement
No competing financial interests exist.
Supplementary Material
Supplementary Text
References
Supplementary Material
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