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Quality of Life and End-of-Life Decisions After Brain Injury

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Reframing Disability and Quality of Life

Part of the book series: Social Indicators Research Series ((SINS,volume 52))

Abstract

The locked-in syndrome (LIS) is a neurologic disorder characterized by the presence of sustained eye opening, intact cognitive function, aphonia, and quadriplegia, most frequently caused by a vascular brainstem lesion. Primary mode of communication is eye movements or blinking. The mortality of acute LIS is about 75 % for vascular etiology, and nearly 90 % of deaths occur in the first 4 months. However, if they survive the first year and have medically stabilized, over 80 % of people with LIS live for 10 years. There are no widely accepted guidelines for management of LIS patients, and medical professionals may have difficulties in assessing LIS patient’s remaining quality of life and believe that chronic LIS survivors want to die. However, the correlation between motor symptoms and quality of life is neither simple nor direct. People with LIS should not be denied the right to die with dignity, but also they should also be allowed to live with dignity, with the best possible pain and symptom management, and with revalidation. In this chapter, we emphasize LIS patients’ right to autonomy and their ability to exercise it, including taking end-of-life decisions.

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Authors and Affiliations

  1. Coma Science Group, Cyclotron Research Center and Neurology Department, University of Liège, Sart Tilman (B30), 4000, Liège, Belgium

    Athena Demertzi, Olivia Gosseries, Didier Ledoux, Steven Laureys & Marie-Aurélie Bruno

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  1. Athena Demertzi
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  2. Olivia Gosseries
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  3. Didier Ledoux
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  4. Steven Laureys
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  5. Marie-Aurélie Bruno
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Correspondence to Athena Demertzi .

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Editors and Affiliations

  1. , Social Science and Health research Unit, Monash University, Dandenong Road 900, Caulfield East, 3181, Victoria, Australia

    Narelle Warren

  2. , Social Science and Health Research unit,, Monash University, Dandenong Road 900, Caulfield East, 3145, Australia

    Lenore Manderson

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Notes

1. Bilateral ptosis should be ruled out as a complicating factor.

2. Nonetheless, the wishes of the child should be taken into account in all decisions involving the child’s health-care and should be given increasing weight in accord with the child’s capacity for understanding. The mature child, in the judgment of the physician, is entitled to make her or his own decisions about health-care. If the child is of sufficient maturity and understanding, the informed consent for any procedure or therapy shall be obtained from the child himself or herself (Bruno et al. 2009).

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Demertzi, A., Gosseries, O., Ledoux, D., Laureys, S., Bruno, MA. (2013). Quality of Life and End-of-Life Decisions After Brain Injury. In: Warren, N., Manderson, L. (eds) Reframing Disability and Quality of Life. Social Indicators Research Series, vol 52. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-3018-2_6

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