Ethical challenges and solutions regarding delirium studies in palliative care

Sweet, L; Adamis, D; Meagher, DJ; Davis, D; Currow, DC; Bush, SH; Barnes, C; Hartwick, M; Agar, M; Simon, J; Breitbart, W; Macdonald, N; Lawlor, PG

Ethical challenges and solutions regarding delirium studies in palliative care

Sweet, L Adamis, D Meagher, DJ Davis, D Currow, DC

Bush, SH Barnes, C Hartwick, M Agar, M

Simon, J Breitbart, W Macdonald, N Lawlor, PG

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Publication Type:: Journal Article
Citation:: Journal of Pain and Symptom Management, 2014, 48 (2), pp. 259 - 271
Issue Date:: 2014-01-01

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Field	Value	Language
dc.contributor.author	Sweet, L	en_US
dc.contributor.author	Adamis, D	en_US
dc.contributor.author	Meagher, DJ	en_US
dc.contributor.author	Davis, D	en_US
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.contributor.author	Bush, SH	en_US
dc.contributor.author	Barnes, C	en_US
dc.contributor.author	Hartwick, M	en_US
dc.contributor.author	Agar, M https://orcid.org/0000-0002-6756-6119	en_US
dc.contributor.author	Simon, J	en_US
dc.contributor.author	Breitbart, W	en_US
dc.contributor.author	Macdonald, N	en_US
dc.contributor.author	Lawlor, PG	en_US
dc.date.available	2013-07-17	en_US
dc.date.issued	2014-01-01	en_US
dc.identifier.citation	Journal of Pain and Symptom Management, 2014, 48 (2), pp. 259 - 271	en_US
dc.identifier.issn	0885-3924	en_US
dc.identifier.uri	http://hdl.handle.net/10453/115552
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. © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.	en_US
dc.relation.ispartof	Journal of Pain and Symptom Management	en_US
dc.relation.isbasedon	10.1016/j.jpainsymman.2013.07.017	en_US
dc.subject.classification	Anesthesiology	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Delirium	en_US
dc.subject.mesh	Palliative Care	en_US
dc.subject.mesh	Biomedical Research	en_US
dc.subject.mesh	Culture	en_US
dc.subject.mesh	Internationality	en_US
dc.subject.mesh	Informed Consent	en_US
dc.subject.mesh	Vulnerable Populations	en_US
dc.title	Ethical challenges and solutions regarding delirium studies in palliative care	en_US
dc.type	Journal Article
utslib.citation.volume	2	en_US
utslib.citation.volume	48	en_US
utslib.for	1110 Nursing	en_US
utslib.for	11 Medical and Health Sciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	closed_access
pubs.issue	2	en_US
pubs.publication-status	Published	en_US
pubs.volume	48	en_US

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. © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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http://hdl.handle.net/10453/115552