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

• Published in: Journal of medical ethics Vol. 41; no. 12; pp. 963 - 969
• Main Authors: Honeybul, Stephen, Gillett, Grant R, Ho, Kwok M, Janzen, Courtney, Kruger, Kate
• Format: Journal Article
• Language: English
• Published: England Institute of Medical Ethics and BMJ Publishing Group Ltd 01.12.2015; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Adaptation, Psychological; Adult; Aged; Brain; Brain injuries; Brain Injuries - surgery; Care and treatment; Clinical ethics; Consent; Decision Making - ethics; Decompressive Craniectomy - ethics; Disability; Disabled Persons - psychology; Ethical Analysis; Ethics; Female; Humans; Informed Consent - ethics; Injuries; Injury Severity Score; Interviews as Topic; Long-Term Care; Male; Medical ethics; Medical prognosis; Middle Aged; Patient outcomes; Patients; Prognosis; Qualitative Research; Retrospective Studies; Statistical analysis; Studies; Surgery; Surveys and Questionnaires; Survivors; Traumatic brain injury; Treatment Outcome; United States; Informed Consent; Neuroethics; Clinical Ethics
• ISSN: 0306-6800; 1473-4257; 1473-4257
• DOI: 10.1136/medethics-2013-101960

ObjectiveTo 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.MethodsTwenty 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.ResultsOf 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.ConclusionsMany 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.