Page 142 - DECISION-MAKING IN SEVERE TRAUMATIC BRAIN INJURY PATIENT OUTCOME, HOSPITAL COSTS, AND RESEARCH PRACTICE
P. 142

Chapter 6
Until we really know what is best, providing appropriate care is something that we as a society morally owe to all patients, while not discounting that catastrophic conditions such as unresponsive wakefulness syndrome or minimally conscious state are accompanied by severe disabilities and enormous challenges. 41**, 89 Although the gravity of the outcome could be obscured by the gratitude of survival, many will doubt this is a life worth living. 75
Future research
Future research initiatives will focus on; (1) the effectiveness of new diagnostic and treatment modalities including short- and long-term functional outcome and health- related QOL, along the whole chain of care; 90, 91 (2) the measurement of well-being and impact on proxies and society; (3) establishing values of dignified existence (i.e. with ex-patients, proxies, physicians); (4) specialized education programs for professionals and patients/proxies on the topic of s-TBI; (5) improving the reliability of prognostic models by machine learning. 92*, 93
Although these initiatives seem promising, and will likely improve TBI care when successful, we should not underestimate the difficulties in conducting traditional studies, such as the variation between patients, injuries and healthcare systems, but also the variety and potential boundaries of ethics and culture. Randomization of severely injured TBI patients, as one example, is considered inappropriate by many physicians. Prospective, large, multi-centered, compared-effectiveness research initiatives might provide necessary evidence in the future. 50
CONCLUSIONS
Decision-making in s-TBI is highly complicated due to uncertainty regarding treatment cost- effectiveness, prognostication and unacceptability of outcome, which are caused by a lack of scientific evidence and also by different societal and individual values. Physicians absolutely do not intentionally deprive patients of a chance on achieving an outcome they would have considered acceptable. Research collaborations between medical specialties and across the borders of traditional sciences of medicine, sociology and philosophy might lead to practical evidence, reduced uncertainty and improved care and outcome for s-TBI patients.
140



























































































   140   141   142   143   144