The ethics of consent in delirium studies

Journal of Psychosomatic Research
Rachel HoltJohn Young

Abstract

Delirium is a syndrome of acute, fluctuating confusion, which affects older people who are unwell. Although common and associated with significant poor outcomes, little is known about its pathophysiology, prevention, or treatment. Delirium research could potentially deliver important benefits for patients and is urgently required. However, such research is challenging as it inevitably involves the recruitment of patients who have impaired capacity to consent, due to the nature of delirium itself and the fact that it is people with dementia or severe illness who are most at risk. This article explores the ethical tensions inherent in the need to protect vulnerable participants in delirium research and the urgent need for high-quality research in a neglected condition. The current research regulations are unnecessarily stringent and may impede good-quality delirium research. There is in particular the danger that they lead to the recruitment of unrepresentative study populations. We suggest a number of changes to the regulations, such as extending the use of the existing European Union procedures for registered medical practitioner proxy consent. We invite comments and feedback from the research community.

References

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Citations

May 2, 2013·Journal of Palliative Medicine·Meera AgarDavid C Currow
Aug 6, 2009·Current Opinion in Psychiatry·Carmelle PeisahEdmond Chiu
Aug 31, 2011·Dementia and Geriatric Cognitive Disorders·Roanna J HallAlasdair M J Maclullich
Mar 26, 2013·American Journal of Respiratory and Critical Care Medicine·Karen E A BurnsUNKNOWN Canadian Critical Care Trials Group
Aug 3, 2013·The American Journal of Geriatric Psychiatry : Official Journal of the American Association for Geriatric Psychiatry·Daniel H J DavisCarol Brayne
Jan 19, 2010·Research in Gerontological Nursing·Ann M Mayo, Margaret I Wallhagen
Mar 11, 2016·Journal of Clinical Nursing·Valerie Fuller
Jan 7, 2014·Journal of Pain and Symptom Management·Lisa SweetPeter G Lawlor
Jun 7, 2017·International Journal of Geriatric Psychiatry·Roanna J HallAlasdair M J MacLullich
Aug 19, 2008·Journal of Psychosomatic Research·Paula T TrzepaczShuyu Zhang

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