title: Long-term survival with unfavourable outcome: a qualitative and ethical analysis.
abstract: 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.
authors: Department of Neurosurgery, Sir Charles Gairdner Hospital and Royal Perth Hospital, Perth, Western Australia, Australia.
authors: Stephen
authors: S
authors: Honeybul
authors: Dunedin Hospital and Otago Bioethics Centre, University of Otago, Dunedin, New Zealand.
authors: Grant R
authors: GR
authors: Gillett
authors: Department of Intensive Care Medicine and School of Population Health, University of Western Australia, Perth, Western Australia, Australia.
authors: Kwok M
authors: KM
authors: Ho
authors: Department of Occupational Therapy, Sir Charles Gairdner Hospital, Perth, Western Australia, Australia.
authors: Courtney
authors: C
authors: Janzen
authors: Department of Occupational Therapy, Sir Charles Gairdner Hospital, Perth, Western Australia, Australia.
authors: Kate
authors: K
authors: Kruger
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001930:Brain Injuries / Q000601:surgery*; D003657:Decision Making / Q000941:ethics; D056424:Decompressive Craniectomy / Q000941:ethics; D006233:Persons with Disabilities / Q000523:psychology; D026689:Ethical Analysis; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D015601:Injury Severity Score; D007407:Interviews as Topic; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D011379:Prognosis; D036301:Qualitative Research; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D017741:Survivors; D016896:Treatment Outcome
keywords: Clinical Ethics; Informed Consent; Neuroethics