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Ethical challenges and solutions regarding delirium studies in palliative care

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dc.contributor.author Sweet, Lisa
dc.contributor.author Adamis, Dimitrios
dc.contributor.author Meagher, David
dc.contributor.author Davis, Daniel H.J.
dc.contributor.author Currow, David C.
dc.contributor.author Bush, Shirley H.
dc.contributor.author Barnes, Christopher
dc.contributor.author Hartwick, Michael
dc.contributor.author Agar, Meera
dc.contributor.author Simon, Jessica
dc.contributor.author Breitbart, William
dc.contributor.author MacDonald, Neil
dc.contributor.author Lawlor, Peter G.
dc.date.accessioned 2018-11-12T14:53:31Z
dc.date.available 2018-11-12T14:53:31Z
dc.date.issued 2014
dc.identifier.uri http://hdl.handle.net/10344/7300
dc.description peer-reviewed en_US
dc.description.abstract Context. Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges.Objectives. Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients.Methods. Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines.Results. Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models.Conclusion. Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. (C) 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. en_US
dc.language.iso eng en_US
dc.publisher Elsevier en_US
dc.relation.ispartofseries Journal of Pain and Symptom Management;48 (2), pp. 259-271
dc.relation.uri https://doi.org/10.1016/j.jpainsymman.2013.07.017
dc.rights This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 2014, 48 (2), pp. 259-271, https://doi.org/10.1016/j.jpainsymman.2013.07.017 en_US
dc.subject Ethics en_US
dc.subject palliative care en_US
dc.subject delirium en_US
dc.subject research en_US
dc.title Ethical challenges and solutions regarding delirium studies in palliative care en_US
dc.type info:eu-repo/semantics/article en_US
dc.type.supercollection all_ul_research en_US
dc.type.supercollection ul_published_reviewed en_US
dc.date.updated 2018-11-12T14:41:07Z
dc.identifier.doi 10.1016/j.jpainsymman.2013.07.017
dc.contributor.sponsor Bruyère Foundation en_US
dc.rights.accessrights info:eu-repo/semantics/openAccess en_US
dc.internal.rssid 1573617
dc.internal.copyrightchecked Yes
dc.identifier.journaltitle Journal Of Pain And Symptom Management
dc.description.status peer-reviewed


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