Page 137 - DECISION-MAKING IN SEVERE TRAUMATIC BRAIN INJURY PATIENT OUTCOME, HOSPITAL COSTS, AND RESEARCH PRACTICE

Focus groups on clinical decision-making in severe traumatic brain injury
Table 2: Reasons, including potential outcome perspectives, to strongly consider treatment- limiting decisions. # Proposed reasons in random order
1. Brain death, from a patient perspective (not considering interests regarding organ donation procedures) 38, 39
2. (chronic) Unresponsive wakefulness syndrome 40**, 41**
3. Minimally conscious state – (minus), (i.e. visual pursuit, localization of noxious stimuli, appropriate smiling or crying to emotional stimuli) 40, 42
4. An available, unquestionable, written and signed specific advance directive of the patient that prohibits treatment in a specific situation (possibly related to expected outcome)
5. A proxy opinion that is unquestionably based on patient preferences and that is not in conflict with the attending medical teams’ considerations, that prohibits treatment in a specific situation (possibly related to expected outcome)
6. A patient’s view (or when necessary a reconstructed vision through surrogates) on life and quality of life is contrary to the outcome that can be expected from the best available
prognostic models.
7. Treatment costs along the whole chain of care that are not cost-effective and higher than the maximum amount that has been decided by national legislation
‘Acceptable’ versus ‘unacceptable’ outcome 6 Valuation of outcome is probably one of the most important aspects in decision-
making, but exact definitions of acceptable or unacceptable outcome after s-TBI
remain elusive. 18*, 43 In literature, ‘upper severe disability’ (Glasgow Outcome Scale
- Extended) and ‘the inability to walk’ or ‘functionally dependent’ (Modified Rankin Scale of 4) are sometimes considered favorable outcomes, while most physicians and researchers would classify this outcome degree as unfavorable. 43, 44 Most competent individuals, irrespective of age, religion or background, consider survival with unfavorable outcome on the Glasgow Outcome Scale (GOS) unacceptable. However, survivors with so-called ‘unfavorable outcome’ after decompressive craniectomy for s-TBI and caregivers of patients after decompressive craniectomy appear to change their definition of ‘a good quality of life’ (QOL) and would have provided retrospective consent for the intervention. 9*, 32* Clearly, the favorable/unfavorable cut-off point used in prognostic models and TBI studies does not necessarily represent an acceptable/ unacceptable outcome for patients. 9*, 43
Healthy individuals are generally unable to predict accurately what future QOL would be acceptable or unacceptable to them, because they often underestimate their ability to adapt to levels of disability they previously considered unacceptable.45 The absence of a linear connection between disabilities and experienced QOL known as the disability paradox is seen in patients with severe disabilities reporting a good QOL (i.e. s-TBI, locked-in syndrome, Duchenne). 9*, 46, 47 This does not validate
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