Page 232 - DECISION-MAKING IN SEVERE TRAUMATIC BRAIN INJURY PATIENT OUTCOME, HOSPITAL COSTS, AND RESEARCH PRACTICE
P. 232

Chapter 12
Individualized approach
The alternative of simply asking individual s-TBI patients in the acute setting to value their predicted outcome could be helpful, but is impossible. Patients after s-TBI have an inability to participate in the decision-making process by definition and their preferences, needs, and values are therefore unknown. 31 Written advanced directives are rarely available and patients have rarely discussed preferences with proxies. 49,51 In addition, proxies, as surrogate decision-makers, are mostly unavailable, unprepared, confused by uncertainty and hope, and unequipped to fully understand the uncertainties of acute clinical decision-making. Proxies might even misjudge or misrepresent patients’ preferences. 69,70
As mentioned in chapter 6, even without mental incapacity due to s-TBI, individuals are generally unable to predict accurately what future quality of life would be ‘acceptable’ or ‘unacceptable’ to them. People often underestimate their ability to adapt to a level of disability they previously considered ‘unacceptable’. 33 Survivors of s-TBI that had achieved a so-called ‘unfavourable outcome’ defined by the Glasgow Outcome Scale (Table 2) after a decompressive craniectomy, or their caregivers, appeared to have changed their perception of ‘a good quality of life’. They were satisfied and would even have provided retrospective consent for the intervention. 71,72 This absence of a linear connection between disabilities and experienced quality of life is known as the disability paradox 73 and is also seen in patients suffering from locked-in syndrome or Duchenne. 72,74-76
A physician’s perspective
Given the reservations regarding a patient’s or proxies preferences, it is inevitable that a physician’s outcome valuation is included in the acute treatment decision-making process. Although physicians have an important role in protecting a patient’s interests, their valuation and subsequent acute treatment-decisions might not always honour a patients’ preferences. Their valuations can be influenced by local policy, specialized medical training, personal and professional experiences, but also by individual values, religious beliefs, and cultural background. This might jeopardize the objective selection of an individualized healthcare strategy that aims to achieve ‘acceptable’ patient outcome.
An important risk in decision-making is a physicians’ strong belief in high mortality and ‘unfavourable’ outcome rates, as it is likely to contribute to clinical nihilism and the overall belief that treatment is ineffective. 47 This focus on poor prognosis is not necessarily in line with reported patient outcome 6,7 but might lead to withholding, withdrawing, or decreasing intensity of potentially beneficial treatment(s). The
230



























































































   230   231   232   233   234