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Background: Decompressive craniectomy (DC) is highly effective in relieving intracranial hypertension; however, patient selection, intracranial pressure threshold, timing, and long-term functional outcomes are all subject to controversy. Recently, recommendations were made to update the Brain Trauma Foundation guidelines in regards to the use of DC based on the DECRA (Decompressive Craniectomy in Patients with Severe Traumatic Brain Injury) and RESCUEicp (Trial of Decompressive Craniectomy for Traumatic Intracranial Hypertension) clinical trials. Neither the updated recommendations, nor the aforementioned trials, provide a method in incorporating individualized patient or surrogate decision-maker preferences into decision making., Methods: In this manuscript, we aimed to redress the gap of not incorporating patient preferences in such value-laden decision making as in the case of DC for refractory post-traumatic intracranial hypertension. We proposed a decision aid based on principles of Decision Theory, and specifically of Expected Utility Theory., Results: We showed that 1) early secondary DC as studied in DECRA, and based on the 1-year outcome data, is associated with decreased expected utility for all possible preference rankings of outcomes; and 2) recommending a late secondary DC versus tier-3 medical therapy, as studied in RESCUEicp, should be informed by individualized patient preference rankings of outcomes as elicited via shared decision-making., Conclusions: The 1-year outcomes from DECRA and RESCUEicp have served as the basis for updated guidelines. However, unaided interpretation of trial data may not be adequate for individualized decision-making; we suggest that the latter can be significantly supported by decision aids such as the one described here and based on expected utility theory., (Copyright © 2021 Elsevier Inc. All rights reserved.)

The concept of futility has been debated for many years, and a precise definition remains elusive. This is not entirely unsurprising given the increasingly complex and evolving nature of modern medicine. Progressively more complex decisions are required when considering increasingly sophisticated diagnostic and therapeutic interventions. Allocating resources appropriately amongst a population whose expectations continue to increase raises a number of ethical issues not least of which are the difficulties encountered when consideration is being given to withholding "life-preserving" treatment. In this discussion we have used decompressive craniectomy for severe traumatic brain injury as a clinical example with which to frame an approach to the concept. We have defined those issues that initially lead us to consider futility and thereafter actually provoke a significant discussion. We contend that these issues are uncertainty, conflict and consent. We then examine recent scientific advances in outcome prediction that may address some of the uncertainty and perhaps help achieve consensus amongst stakeholders. Whilst we do not anticipate that this re-framing of the idea of futility is applicable to all medical situations, the approach to specify patient-centred benefit may assist those making such decisions when patients are incompetent to participate.

Background: Decompressive hemicraniectomy (DHC) after space-occupying strokes among patients older than 60 years has been shown to reduce mortality rates but at the cost of severe disability. There is an ongoing debate about what could be considered an acceptable outcome for these patients. Data about retrospective consent to the procedure after lengthy time periods are lacking., Methods: This study included 79 consecutive patients who underwent DHC during a 7.75-year period. Surviving patients were assessed for functional and psychological outcome, quality of life (QoL) and retrospective consent for the procedure. Patients younger than 60 years were compared with older patients., Results: Of our 79 patients, 44 were younger than 60 years (median 50 years, interquartile range (IQR) 19-59 years) and 35 were older (median 68 years, interquartile range 60-87 years). The 30-day mortality rate was higher for the older group, but the difference was not statistically significant. Functional outcome was significantly better in the younger group: 31% of the patients in this group vs. 10% in the older group had a modified Rankin Scale score of 0-3 (p = 0.046). The mean National Institutes of Health Stroke Scale score was 17 ± 14 for the younger group and 29 ± 15 for the older group (p = 0.002). On the 36-Item Short Form Health Survey, with the exception of the item 'General health', the older group reported higher values for all items, with statistically significant differences between the 2 groups on the items 'Role limitation emotional' (p = 0.0007) and 'Vitality' (p = 0.02). In the younger group, 29% of patients retrospectively declined consent for DHC opposed to 0% of patients in the older group (p = 0.07)., Conclusions: Despite impaired functional outcome after DHC, indicators of QoL and retrospective consent are higher for patients older than 60 years over the long term. This finding should be taken into account by those who counsel patients and caregivers with regard to this serious procedure., (© 2015 S. Karger AG, Basel.)

Background: Decompressive hemicraniectomy (DHC) reduces mortality and improves outcome after malignant middle cerebral artery (MCA) infarction but leaves a high number of survivors severely disabled. Attitudes among physicians toward the degree of disability that is considered acceptable and the impact of aphasia may play a major role in treatment decisions., Methods: DESTINY-S is a multicenter, international, cross-sectional survey among 1,860 physicians potentially involved in the treatment of malignant MCA infarction. Questions concerned the grade of disability, the hemisphere of the stroke, and the preferred treatment for malignant MCA infarction., Results: mRS scores of 3 or better were considered acceptable by the majority of respondents (79.3%). Only few considered a mRS score of 5 still acceptable (5.8%). A mRS score of 4 was considered acceptable by 38.0%. Involved hemisphere (dominant vs. non-dominant) was considered a major clinical symptom influencing treatment decisions in 47.7% of respondents, also reflected by significantly different rates for DHC as preferred treatment in dominant versus non-dominant hemispheric infarction (46.9 vs. 72.9%). Significant differences in acceptable disability and treatment decisions were found among geographic regions, medical specialties, and respondents with different work experiences., Conclusion: Little consensus exists among physicians regarding acceptable outcome and therapeutic management after malignant MCA infarction, and physician's recommendations do not correlate with available evidence. We advocate for a decision-making process that balances scientific evidence, patient preference, and clinical expertise.

Primary Objective: To assess clinical outcome following restoration of cranial contour in a young male who had suffered a severe traumatic brain injury., Research Design: Case report., Methods and Procedures: A young male was assessed before and after cranial reconstructive surgery with a custom-made titanium plate. The patient had previously required a bifrontal decompressive craniectomy in order to control intractable intracranial hypertension due to neurotrauma. Following an autologous cranioplasty he made very little neurological recovery and remained wheelchair-bound with severe contractures and was only able to follow single stage commands. Over the following 2 years he developed extensive resorption of his bone flap such that it required augmentation., Main Outcomes and Results: After surgery he clinically improved such that he was able to communicate more effectively and, although he remained severely disabled and fully dependent, he was able to communicate that he would have provided consent for the initial decompressive procedure even if he had known that the eventual outcome would be survival with severe disability and total dependence., Conclusions: Long-term follow-up is required for patients with severe traumatic brain injury not only to assess outcome and complications, but also to assess how acceptable that outcome is for the patient and their families.

Objective: Decompressive craniectomy is often emergently performed in an effort to reduce intracranial hypertension. After this urgent intervention, brain-injured patients often start rehabilitation programs but are left with a skull defect. Cranioplasty is often performed in these situations in order to repair this defect, mainly for cosmetic reasons and/or the patient's safety. The possible effects of this breach on the patients' neurological recovery are poorly understood and have been scarcely evaluated until now. The effect of cranioplasty on cognitive and motor functions in severely brain-injured individuals remains controversial., Methods and Procedures: In order to further support evidence of the beneficial effects of cranioplasty on motor and cognitive function in severely brain-injured individuals, we discuss four cases, retrospectively selected among a cohort of several patients who underwent decompressive craniectomy after severe brain injury. The selected patients presented a biphasic pattern of recovery of cognitive and motor performance consisting of an initial improvement, followed by a progressive worsening of neurological signs and symptoms, and, ultimately, an unexpected recovery of function following cranioplasty., Main Outcomes and Results: In all four cases, we found a deterioration of motor and neuropsychological deficits prior to cranioplasty and a subsequent unexpected improvement in performance on a neuropsychological battery and a series of motor function tests immediately after cranioplasty., Conclusions: Results give clear evidence that a subset of patients are negatively affected by the persistence of a breach in skull integrity during the rehabilitation phase of brain injury. Moreover, they show that the repair of the cranial defect can trigger relevant neurological improvement in both motor and cognitive domains. This possibility should serve as a reminder to rehabilitation clinicians to give serious consideration to prompt performance of cranioplasty during the time allotted for the rehabilitation of these patients.

Background: Decompressive hemicraniectomy reduces mortality after space-occupying MCA infarction. Data on the general public's opinion toward interventions that can save lives but leave the survivors impaired are lacking., Methods: In this population-based epidemiological study in a German city, we surveyed 312 adults in a telephone interview. Here, we presented a scenario of a space-occupying MCA infarct. We evaluated probands' attitude toward decompressive surgery in general, and toward outcome scenarios according to Rankin scale (RS) definitions., Results: 312 persons (157 women, 52 ± 20 years) were interviewed. 58 persons had difficulty comprehending the proposed scenario, most of them being of advanced age (79 ± 5 years). From the remaining 254 responders 5 (2%) persons favoured surgical intervention, 149 (58%) were undecided, and 100 (39%) were opposed to surgery. The number of individuals opting for surgery rose in scenarios with a better outcome: If very severe impairment was anticipated (RS 5), only 3 (1%) persons favored surgery. With severe (RS 4), moderate (RS3), and slight impairment (RS2) the numbers were at 16 (6%), 60 (24%), and 161 (63%), respectively. We found no association with age, sex, religion, education, self-estimated health status, or marital status., Conclusions: Explaining complex medical situations to laypersons poses a major problem, particularly to those of old age. Only a minority favors life-saving medical interventions if survival is associated with deficits of unpredictable degree. The majority of persons does not favor intervention even if only moderate impairment is anticipated. Decompressive surgery may in fact be against the values of many individuals.

Background: Optimal management of increased intra-cranial pressure following severe traumatic brain injury comprises a combination of sequential medical and surgical interventions. Decompressive craniectomy (DC) is a cautiously recommended surgical option that has been shown to reduce intracranial pressure. Considerable variability in the timing and frequency of using DC across neurosurgical centres reflects, in part, the lack of clarity regarding long-term outcomes. The majority of previous work reporting outcomes among individuals who have received DC following traumatic brain injury (TBI) has focused predominantly on gross physical outcomes, to the relative exclusion of more subtle functional, social and psychological factors., Aim: This paper reviews the methodological aspects of previous studies that have reported outcomes following DC and provides recommendations to guide the future assessment of recovery to enable meaningful conclusions to be drawn from the literature describing outcomes after DC following severe TBI.

Background: Decompressive surgery for malignant middle cerebral artery infarction increases the number of surviving patients; this, however, leaves some patients severely disabled. This study analyzed the patients' retrospective consent to hemicraniectomy in light of the experienced functional outcome 12 months after hospital stay., Methods: This retrospective study included all patients who underwent decompressive hemicraniectomy for malignant middle cerebral artery infarction in the Department of Neurology, University of Erlangen, Germany, from January 2006 until March 2009. Data on mortality and functional outcome (measured by the modified Rankin Scale; mRS) 6 and 12 months after treatment were correlated with retrospective consent to hemicraniectomy as well as with a quality of life instrument (EuroQol). Data were obtained by structured telephone interviews with the patients themselves or their closest relatives., Results: In the study period 28 patients received decompressive surgery. Retrospective consent to hemicraniectomy was 82.1%. Five patients, or their closest relatives, would not agree to hemicraniectomy again, given their functional outcome after 1 year. Two out of two patients who experienced an mRS of 5 would not have consented. Low quality of life was most often declared in this subgroup., Conclusions: Retrospective consent to hemicraniectomy for treatment of malignant MCA infarction depends on functional long-term outcome. We need to identify those patients who would survive the malignant MCA infarction due to decompressive surgery but only reach a severely reduced functional status.

Aims: The aim of this narrative review of the literature was to examine the current state of knowledge regarding the impact of aggressive surgical interventions for severe stroke on patient and caregiver quality of life and caregiver outcomes., Background: Decompressive hemicraniectomy (DHC) is a surgical therapeutic option for treatment of massive middle cerebral artery infarction (MCA), lobar intracerebral hemorrhage (ICH), and severe aneurysmal subarachnoid hemorrhage (aSAH). Decompressive hemicraniectomy has been shown to be effective in reducing mortality in these three life-threatening conditions. Significant functional impairment is an experience common to many severe stroke survivors worldwide and close relatives experience decision-making difficulty when confronted with making life or death choices related to surgical intervention for severe stroke., Data Sources: Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, and PsychInfo., Review Methods: A narrative review methodology was utilized in this review of the literature related to long-term outcomes following decompressive hemicraniectomy for stroke. The key words decompressive hemicraniectomy, severe stroke, middle cerebral artery stroke, subarachnoid hemorrhage, lobar ICH, intracerebral hemorrhage, quality of life, and caregivers, literature review were combined to search the databases., Results: Good functional outcomes following DHC for life-threatening stroke have been shown to be associated with younger age and few co-morbid conditions. It was also apparent that quality of life was reduced for many stroke survivors, although not assessed routinely in studies. Caregiver burden has not been systematically studied in this population., Conclusion: Most patients and caregivers in the studies reviewed agreed with the original decision to undergo DHC and would make the same decision again. However, little is known about quality of life for both patients and caregivers and caregiver burden over the long-term post-surgery. Further research is needed to generate information and interventions for the management of ongoing patient and carer recovery following DHC for severe stroke.

Objective: To assess detailed long-term clinical outcome at least 1 year after decompressive craniectomy (DC) in patients with severe traumatic brain injury (TBI)., Methods: One hundred and thirty-one patients with severe TBI underwent DC between September 1997 and September 2005. Outcome was measured using the Glasgow Outcome Scale (GOS). Detailed outcome analysis was performed using Glasgow Outcome Scale Extended, Short-Form 36 (SF-36), Beck Depression Inventory, Trail Making Test B (TMT-B), Digit-Symbol Test (DST) and Barthel Index (BI)., Results: Sixty-three patients (48.1%) died during their initial hospital stay, 27 (20.6%) were discharged in a vegetative state, 32 (24.4%) with severe disability and nine (6.9%) with moderate disability (GOS 3 and 4, respectively). At time of follow-up 75 patients (67.7%) were either dead or in a vegetative state. Thirty patients with GOS >2 were recruited for a detailed outcome analysis: Major depression, neurologic deficits and impaired TMT-B and DST performances were common and significantly more prevalent than in normative controls. Yet, patients reported only modestly reduced SF-36 and high BI scores., Conclusions: Despite multiple health-related problems after DC, many patients proved highly functional in activities of daily living and reported qualities of life not significantly inferior to that of healthy individuals. Depression was common and requires to be addressed with patients and caregivers. Better targeted therapies could improve neuropsychological and psychiatric outcomes in this complex cohort.