Abstract
Since the 1970s, “quality of life” has been a political and a social matter of concern. In the medical field, “Quality of life measures” gradually appeared. When it came to be used to justify withholding and withdrawing medical treatments, it rose new ethical problems and called for a more in-depth reflection on the distinctions, categorizations, and hierarchies between human beings that it could involve. The first section of this chapter will focus on the emergence of this notion “quality of life”, on its integration into medicine and its uses. The second section describes the main categorizations that were proposed in the bioethical field. The last section introduces some elements to question the unthought that persists in bioethical discourses on quality of life.
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Notes
- 1.
The words “ethics” and “morals” are used here as synonyms. In the context of 1970s US bioethics, the distinction between these two terms is less significant than elsewhere—in France, for instance (see Cassin 2004).
- 2.
A 1962 NASA-commissioned study by the American Academy of Arts and Science pointed at the insufficiency of economic indicators. The objective of this research was to forecast the effects of the space program on US society. Two years later, the National Commission on Technology, Automation, and Economic Progress was created for this purpose. Its objective was to investigate the current effects and future impacts of technological change on society and the economy, and to deliver recommendations based on its findings. Both bodies noted the absence of methodologies that could enable them to achieve their objectives. Economic indicators, which had so far been regarded as essential, are incapable of documenting various aspects of society. A priority was set to devise “social indicators” to analyze the overall social, economic, technical, and political conditions. This movement was referred to as “the social indicators movement”.
- 3.
This perception of progress, the discourses that articulated it, and the various bioethical considerations at play in the opposition between the sanctity of life and quality of life had at their core “the boundary between nature and culture [that] marks the dividing line between scientist and humanist and often defines the battle-line between liberal and conservative” (Daston 2002: 394). As accurately noted by Lorraine Daston, and as we will see in the third section of this chapter, “a whole metaphysics underpins the distinction” (ibid.).
- 4.
Karen Ann Quinlan was 22 when she entered coma in 1975. Two months later, her (Catholic) parents, faced with an irreversible situation, signed the disclaimers required for their daughter to be disconnected from the mechanical ventilator. However, it took a year before the New Jersey Supreme Court authorized this interruption. Quinlan had started breathing autonomously again, but without regaining her conscious functions. She spent nine years in a persistent vegetative state.
- 5.
Pope John Paul II articulates this idea in the Encyclical letter Evangelium vitæ: “Another welcome sign is the growing attention being paid to the quality of life and to ecology, especially in more developed societies, where people’s expectations are no longer concentrated so much on problems of survival as on the search for an overall improvement of living conditions”. However, a few lines above, he writes: “The so-called ‘quality of life’ is interpreted primarily or exclusively as economic efficiency, inordinate consumerism, physical beauty and pleasure, to the neglect of the more profound dimensions—interpersonal, spiritual and religious—of existence” (John Paul II 1995).
- 6.
At the time, there was no theoretical justification for the equivalence between irreversible coma and death: this was only articulated in 1981 with Defining Death. But contrary to Fletcher’s wishes, the US President’s Commission that issued this document justified the equivalence between brain death and the death of a human being by the irreversible functional arrest of the organism, and not by the irreversible loss of conscious abilities and of the neocortical function (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1981; see also García and Maglio 2014).
- 7.
This interpretation is not shared by all. For instance, Marie Gaille holds that “according to Kant, human life may not be assessed because it holds a dignity that is peculiar to all moral beings”. Nevertheless, Gaille is aware that Kant’s argument is not without ambiguities. In a footnote, she states that “one could try to conclude … that patients who have lost their reasoning capabilities must be excluded from the realm of moral subjects, and that their life could therefore be assessed”. This is exactly Engelhardt’s perspective. Against this thesis, Gaille opposes that “it cannot be that simple to assume that this was Kant’s opinion because nothing testifies, at least from an exegetical perspective, that he might have adopted this stance if faced with the questions posed by the decision of kee** patients who have ‘lost their mind’ alive” (Gaille 2010: 130–131).
- 8.
“A thinking intelligent being, that has reason and reflection, and can consider itself as itself, the same thinking thing, in different times and places; which it does only by that consciousness which is inseparable from thinking, and, as it seems to me, essential to it: it being impossible for any one to perceive without perceiving that he does perceive” (Locke 1690: ch. XXVII).
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Maglio, M., García, V. (2020). Thinking “Quality of Life”: From Measures to Categorizations of the Human Beings. In: Voléry, I., Julien, MP. (eds) From Measuring Rods to DNA Sequencing. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-7582-2_4
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