Uncertainty, conflict and consent: revisiting the futility debate in neurotrauma.

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.

Valoración ética de la craneoplastia con vendaje compresivo como forma de limitación de tratamientos de soporte vital / Valoração ética da cranioplastia com curativo compressivo como forma de limitação de tratamentos de suporte vital / Ethical value of cranioplasty with oppressive binder as a way of limiting life support treatments

Este artículo analiza, desde una postura crítica, la utilización de la craneoplastia de compresión con vendaje como método de limitación de tratamiento de soporte vital (LTSV). Con esta técnica activa, algunos autores han propuesto provocar la muerte encefálica, posibilitando la donación de órganos. Al contrastar este procedimiento con las recomendaciones del documento de consenso sobre el tratamiento al final de la vida del paciente crítico, elaborado por el grupo de bioética de la SEMICYUC, se comprueba que los medios y fines de esta técnica no encajan con las actuaciones propias de la LTSV, que se basan en la retirada de medios de soporte vital o en su no inicio, al considerar dichos medios desproporcionados o extraordinarios en algunos casos, evitando así la obstinación terapéutica. La definición de LTSV permite clarificar los límites en los que, de un modo éticamente correcto y consensuado, las actuaciones al final de la vida se circunscriben a los fines de la medicina, evitando la sospecha de que dichas actuaciones puedan ser malinterpretadas como justificación para una obtención de órganos abusiva. El artículo concluye que la provocación directa de la muerte encefálica mediante la técnica de craneoplastia con vendaje no parece cumplir los criterios propios de la LTSV.

This article analyzes, from a critical perspective, the use of cranioplasty with oppressive binder as a method to limit life support treatment (LLST). Some authors have proposed that this active technique provokes encephalic death, allowing organ donation. Contrasting this procedure with the recommendations of the consent document about treatment of critical patients at the end of life, elaborated by the bioethics group of SEMICYUC, it is shown that the means and ends of this technique do not match with the proper actions of LLST, based on the withdrawal of life support means or in not starting them, considering such means disproportionate or extraordinary in some cases, thus avoiding the therapeutic obstinacy. The definition of LLST allows to clarify the limits in which, in a way ethically fair and with a consensus, the acts at the end of life are included in the medical goals, avoiding the suspicion that these acts may be misinterpreted as justifying an abusive extraction of organs. This article concludes that the direct provocation of encephalic death by the technique of cranioplasty with binder does not appear to fulfill the criteria proper of LLST.

Este artigo analisa, a partir de uma postura crítica, a utilização da cranioplastia de compressão com curativo como método de limitação de tratamento de suporte vital (LTSV). Com esta técnica ativa, alguns autores têm proposto provocar a morte encefálica, possibilitando a doação de órgãos. Ao contrastar este procedimento com as recomendações do documento de consenso sobre o tratamento do final de vida do paciente crítico, elaborado pelo grupo de bioética da SEMICYUC, se comprova que os meios e fins desta técnica não encaixam com as atuações próprias da LTSV, que se baseiam na retirada de meios de suporte vital ou em seu não início, ao considerar os ditos meios desproporcionados ou extraordinários em alguns casos, evitando assim a obstinação terapêutica. A definição de LTSV permite esclarecer os limites nos quais, de um modo eticamente correto e aceito, as atuações ao final da vida se circunscrevem às finalidades da medicina, evitando a suspeita de que ditas atuações podem ser mal interpretadas como justificativa para uma obtenção de órgãos abusiva. O artigo conclui que a provocação direta da morte encefálica mediante a técnica da cranioplastia com curativo não parece cumprir os critérios próprios da LTSV.

Long-term survival with unfavourable outcome: a qualitative and ethical analysis.

OBJECTIVE: To assess the issue of 'retrospective consent' among a cohort of patients who had survived with unfavourable outcome and to assess attitudes among next of kin regarding their role as surrogate decision makers. METHODS: Twenty patients who had survived for at least 3 years with an unfavourable outcome following a decompressive craniectomy for severe traumatic brain injury were assessed with their next of kin. During the course of a semistructured interview, participants were asked whether they would have provided consent if they had known their eventual outcome. They were also asked for general comments regarding all aspects of the clinical journey. Eighteen patients had next of kin who were available for interview. For two patients, there was no longer any family involvement. RESULTS: Of the 20 patients, 13 were able to provide a response and 11 felt that they would have provided consent even if they had known their eventual outcome. Of the 18 next of kin who were able to express an opinion, 10 felt that they would have provided retrospective consent. CONCLUSIONS: Many patients appeared to have adapted to a level of disability that competent individuals might deem unacceptable. This does not necessarily mean that such outcomes should be regarded as 'favourable', nor that decompressive craniectomy must be performed for patients with predicted poor outcome. Nevertheless, those burdened with the initial clinical decisions and thereafter the long-term care of these patients may draw some support from the knowledge that unfavourable may not necessarily be unacceptable.

Cranioplasty with bandaging. New forms of limitation of life support and organ donation.

Most of transplanted organs are obtained from brain death (BD) donors. In neurocritical patients with catastrophic injuries and decompressive craniectomy (DC), which show a dreadful development in spite of this treatment, DC could be a futile tool to avoid natural progress to BD. We propose if cranial compressive bandage (cranioplasty with bandage) could be an ethically correct practice, similar to other life-sustaining treatment limitation (LSTL) common methods. Based on a clinical case, we contacted with the Assistance Ethics Committee and some bioethics professionals asking them two questions: 1) Is ethically correct to perform a cranioplasty with bandage in those patients with LSTL indication? 2) Thinking in organ donation possibility, is this option preferable? Conclusions 1) Cranioplasty with bandage could be considered an ethically acceptable LSTL practice, similar to other procedures. 2) It facilitates organ donation for transplant, which provides value-added because of its own social good. 3) In these cases, it is necessary to know previous patient's will or, in absentia, to obtain family consent after a detailed procedure report.

Ethical considerations for performing decompressive craniectomy as a life-saving intervention for severe traumatic brain injury.

In all fields of clinical medicine, there is an increasing awareness that outcome must be assessed in terms of quality of life and cost effectiveness, rather than merely length of survival. This is especially the case when considering decompressive craniectomy for severe traumatic brain injury. The procedure itself is technically straightforward and involves temporarily removing a large section of the skull vault in order to provide extra space into which the injured brain can expand. A number of studies have demonstrated many patients going on to make a good long-term functional recovery, however, this is not always the case and a significant number survive but are left with severe neurocognitive impairment. Unfortunately, many of these patients are young adults who were previously fit and well and are, therefore, likely to spend many years in a condition that they may feel to be unacceptable, and this raises a number of ethical issues regarding consent and resource allocation. In an attempt to address these issues, we have used the analytical framework proposed by Jonsen, that requires systematic consideration of medical indications, patient preferences, quality of life and contextual features.

Neurotrauma and the rule of rescue.

The rule of rescue describes the powerful human proclivity to rescue identified endangered lives, regardless of cost or risk. Deciding whether or not to perform a decompressive craniectomy as a life-saving or 'rescue' procedure for a young person with a severe traumatic brain injury provides a good example of the ethical tensions that occur in these situations. Unfortunately, there comes a point when the primary brain injury is so severe that if the patient survives they are likely to remain severely disabled and fully dependent. The health resource implications of this outcome are significant. By using a web-based outcome prediction model this study compares the long-term outcome and designation of two groups of patients. One group had a very severe injury as adjudged by the model and the other group a less severe injury. At 18 month follow-up there were significant differences in outcome and healthcare requirements. This raises important ethical issues when considering life-saving but non-restorative surgical intervention. The discussion about realistic outcome cannot be dichotomised into simply life or death so that the outcome for the patient must enter the equation. As in other 'rescue situations', the utility of the procedure cannot be rationalised on a mere cost-benefit analysis. A compromise has to be reached to determine at what point either the likely outcome would be unacceptable to the person on whom the procedure is being performed or the social utility gained from the rule of rescue intervention fails to justify the utilitarian value and justice of equitable resource allocation.

Surgical intervention for severe head injury: ethical considerations when performing life-saving but non-restorative surgery.

BACKGROUND: The aim of this study was to compare the predicted outcome with observed outcome in those patients who have had a unilateral decompressive craniectomy following evacuation of an intracranial mass lesion and to consider some of the ethical issues that need to be addressed when performing life-saving but non-restorative surgery. METHODS: By using the web-based outcome prediction model developed by the CRASH trial collaborators predicted and observed outcomes were compared for those patients who had had a unilateral decompression after evacuation of a mass lesion in the two major neurotrauma hospitals in Western Australia between 2004 and 2008. Three cases were selected with differing outcome predictions. RESULTS: For the three selected cases the predicted risk of an unfavourable outcome at 6 months was 65.8%, 78.9% and 91.3%, respectively. For the 11 patients in this cohort with an outcome prediction between 61% and 70%, the observed outcome at 18 months (GOS) was: 5 had a good outcome, 4 were moderately disabled, and 3 were severely disabled. For the ten patients with an outcome prediction between 90-100%, observed outcome confirmed: one patient was moderately disabled, four patients were severely disabled, one patient was in a permanent vegetative state, and four patients had died. CONCLUSION: As the index of injury severity (as adjudged by the CRASH outcome prediction model) increases, clinical decision making and discussion with surrogates must reflect the evidence provided by observed outcome, prior to life-saving but potentially non-restorative decompressive surgery.