Page 140 - DECISION-MAKING IN SEVERE TRAUMATIC BRAIN INJURY PATIENT OUTCOME, HOSPITAL COSTS, AND RESEARCH PRACTICE

Chapter 6
Patient, proxy or shared decision-making
Values, preferences and treatment wishes of patients (when necessary obtained through proxies) are to be respected and should be incorporated in clinical decision- making. Patient with s-TBI are incapable to decide, and their preferences have rarely been discussed with proxies or recorded in an (written) advance directive. 18*, 48* Proxies are then confronted with difficult treatment dilemmas, but information as desired by proxies is not always provided and a patients’ social circumstances and preferences are not always included in physicians’ decision-making process. 34*, 35 Proxies might also misjudge or deliberately misrepresent patients’ preferences. 24*, 74
Proxies are mostly unprepared, confused by uncertainty and hope, and unequipped to fully understand the uncertainties of prognostication and clinical decision- making. 7, 75 This puts a high burden on the clinician’s shoulders. Although medical paternalism is increasingly replaced by ‘shared decision-making’, the latter remains a difficult, if not impossible proposition when required in neurocritical care. 26**, 76* To improve conversations with proxies, it is recommended to provide early, frequent, understandable, honest, and consistent multidisciplinary communication about the patient’s condition, consequences of actions, and prognosis, while acknowledging an acceptable level of uncertainty. Although specific needs are highly variable because perceptions are different and often inconsistent with reality, physicians must align unrealistic expectations with medical reality; in case of conflicts, moral deliberation could be helpful and otherwise professional judgement should prevail.
Considerations from a societal perspective
‘The rule of rescue’ is a powerful ethical proclivity ingrained in human nature, possible even more in acute care physicians, to rescue those in immediate danger, regardless of risks or costs. 77 ‘Performing against the odds’ heroism is often in conflict with the utilitarian approach, which aims at the overall performance of the entire healthcare system instead of the entire focus being on the benefits of a single individual.
In this context, it is considered difficult to justify lifesaving neurosurgical interventions resulting in unacceptable outcome at enormous healthcare costs. The ethical question transcends from individual values to societal and political valuation of life related to costs. Studies assessing in hospital costs after s-TBI however, suggest rather an ‘acceptable’ degree of in-hospital treatment costs, although variation is high and study quality generally poor. 2, 78 Studies on the long-term costs of patients after s-TBI or patients with severe disorders of consciousness are unfortunately scarce, prohibiting
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