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Decision Support Tools for Improving Dementia Care
- Rizaldy Pinzon (1 June 2009)
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Video decision support tool for advance care planning in dementia: ethical concerns
- J.S. Swindell, Baylor College of Medicine, Houston, USA 77030 (2 July 2009)
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Rizaldy Pinzon, Neurologist Bethesda hospital Yogyakarta Indonesia 55224
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The article from Volandes, et.al. is very interesting. This article gives new hope for improving the patient's knowledge for decision making. Dementia is a progressive neurodegenerative disease.No curative treatment for dementia, most individuals with dementia survive to an advanced stage of dementia at which time many of them require institutional care. Home care for individuals with advanced dementia and especially institutional care are very complex. Advance care planning discussions are needed for planning of the future patients care.The good understanding of the natural history of dementia and its progression is very important for rationale treatment goal either for the physicians and patients/ carers. This suggests that education and advanced care planning discussions should be at the center of an intervention. Benefits may extend to improved understanding, more appropriate decision making. It may also lead to greater satisfaction with end of life care in relatives. Competing interests: None declared |
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J.S. Swindell, Assistant Professor Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, USA 77030
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In their article on the use of video as a decision support tool for advance care planning in dementia, Volandes et al. rightly note that a problem in advance care planning is the difficulty that patients have envisioning what a particular health state will be like.1 Therefore, our challenge as physicians and shared decision makers is to help patients better and more accurately imagine themselves in the health state that they are making advance decisions about. While the use of video as a method to assist in imagining has its merits, it is not without concern. First, data from the behavioral sciences show that healthy persons often overestimate their negative affect and quality of life in a proposed disease state. One study done on dialysis patients showed that dialysis patients were not less happy than healthy non-patients, and that the healthy people failed to anticipate this adaptation.2 Becoming disabled would appear to be a horrible prospect, but data shows that people who actually are disabled are not feeling horrible. A famous study by Phillip Brickman found that happiness levels did not vary much pre- and post- paraplegia or quadriplegia.3 So, we must caution ourselves in the use of these videos, in that patients may watch them and think that they would be miserable living with advanced dementia, but this may be an inaccurate prediction. In order to measure the accuracy of this prediction, we would need to measure affect and quality of life in patients actually living with advanced dementia, and this is not possible given their cognitive limitations. Second, as the authors briefly note, videos can be manipulated to favour a particular perspective. Perhaps much more so that verbal descriptions or narratives, they are powerful and persuasive, whether intended to be so or not. Thus, we face the important ethical consideration of helping patients envision themselves in a health state without biasing them one way or the other–a very careful and difficult balance indeed. 1 Volandes A, Paasche-Orlow M, Barry M, Gillick M, Minaker K, Chang Y, Cook EF, Elmer DA, El-Jawahri A, and Mitchell S. Video decision support tool for advance care planning in dementia: randomised controlled trial BMJ 2009; 338: b2159 2 Riis J, Loewenstein G, Baron J, Jepson C, Fagerlin A, and Ubel P. Ignorance of hedonic adaptation to hemodialysis: a study using ecological momentary assessment. Journal of Experimental Psychology 2005;134:3-9. 3 Brickman P, Coates D, and Janoff-Bulman R. Lottery winners and accident victims: is happiness relative? Journal Personality and Social Psychology 1978;36:917-27. Competing interests: None declared |
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