Alzheimer’s Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society, by Megan-Jane Johnstone. Farnham: Ashgate, 2013. Pp. 246. $149.95 (hardcover and electronic).
Reviewed by: Mark Schweda (University of Göttingen) (Mark.Schweda@medizin.uni-goettingen.de)
Two strands of discourse have been formative for recent bioethical debates in the academic sphere and the public arena. One is concerned with the defense of individual autonomy against residues of medical paternalism and the systemic automatisms of modern clinical practice, especially in view of end-of-life decision making. The other revolves around the just distribution of scarce health care resources, especially considering the impact of demographic aging on public health care systems. This volume investigates how both discourse strands—each one justified and important—have become entangled in the field of late-onset dementia, and it explores some of the rather discomforting consequences. The text thus sheds light on the rise of a culture in which older people with dementia are increasingly perceived as a problem (for themselves, their immediate surroundings, and society at large), while physician-assisted suicide or euthanasia are at the same time increasingly presented as the only viable solution. Indeed, one of the author’s main concerns is with what she calls the “Alzheimerization of the euthanasia-debate”: political activists capturing the topic of dementia in their fight for the legalization of physician assisted suicide and euthanasia, causing serious collateral damage for the public image and standing of persons with dementia. The book is based on a large (but apparently not overly systematic) corpus of material concentrating more or less on the Australian situation and debate. It includes analyses of academic and professional literature, media reports (newspapers, TV, radio, documentary film), legal texts, public opinion polls, as well as partisan web sites.
Employing methods of discourse analysis and philosophic inquiry, Johnstone builds her argument in several consecutive steps: After a concise introduction to the topic and methodology of her research and a brief overview of essential medical, epidemiological, and public health facts about Alzheimer’s disease, she identifies and analyzes some of the most prominent media constructions and representations of the disorder. One focus is on the function of malignant metaphors that fuel public paranoia about dementia and reinforce the stigmatization of those affected. The chapters that follow describe the public discussion on demographic aging and its projected catastrophic impacts on public healthcare systems, and trace how, against this rather somber background, euthanasia has been launched as a legitimate and reasonable option for people with dementia. The author criticizes manipulative and deceitful strategies pursued by euthanasia activists to undermine opposing viewpoints and movements, and to promote and advertise their own cause (e.g., by means of effective marketing and public relations methods). The final chapters speculate about the reasons for the euthanasia movement’s resounding success, and try to develop an appropriate interpretation of its considerable public resonance. Johnstone argues that the public preoccupation with euthanasia is little more than an illusory “anxiety buffer” against the terrifying knowledge of our human creatureliness and mortality, and calls for less ideology and more deliberation in the public discourse.
From a (bio-)ethical point of view, the book is strongest where it investigates how public perspectives on dementia and euthanasia are shaped by specific linguistic devices and media strategies. Due to its origins in concrete clinical practice, much bioethical scholarship traditionally starts from individual moral conflicts, taking them as given and disregarding the socioeconomic contexts and sociocultural horizons that constitute and frame them in the first place. In view of this “problem positivism,” Johnstone’s analysis is truly eye-opening since it illustrates the fundamental ethical significance of public images and representations, as well as the enormous power of the media strategies launching and promoting them. The respective passages effectively challenge the widespread view of bioethical problems as given facts that can be solved like a puzzle by simply applying some sort of incorruptible, disembodied rationality. Instead, they highlights the inevitability and ethical relevance of the (popular) cultural dimension and its metaphoric constitution. However, these strengths are seriously thwarted by the author’s pretense of neutrality. Johnstone claims that her own work does not take sides in the fight about Alzheimer’s and euthanasia. According to her, its sole purpose is to analyze the debate and the strategies employed on both sides, and its only aim is an overall increase in transparency and intellectual honesty. Clearly, this way of putting things shows a certain lack of honesty, itself, since Johnstone’s whole argument is unmistakably driven by a profound aversion to the pro-euthanasia movement—an aversion that actually permeates every argumentative step and thread of her text. However, by not putting her cards on the table and instead claiming to give a neutral account, she exposes her study to accusations of being just as one-sided and biased as the movement she criticizes. Indeed, while meticulously pinning down and anatomizing real or alleged logical fallacies and rhetorical tricks in every bit of pro-euthanasia material she can get hold of, Johnstone blinds out the use of similar strategies in the opposing camp. It frequently seems as if, rather than weighing and discussing arguments or evidence, Johnstone piles them up and fires them off like ammunition in a battle, without sufficient regard to their pertinence or coherence. There are arguments in favor of euthanasia? She dismisses the idea of pure argumentation and stresses the inevitability of metaphoricity. There are negative conceptions of dementia? She debunks them as manipulative metaphors and subjects them to strict logical analyses. Recent opinion polls indicate rising public approval rates for the legalization of euthanasia? The whole idea of the public is quickly deconstructed, and—while we’re at it—democratic majority rule, as well. This procedure not only appears somewhat imbalanced and arbitrary, but also, in the end, suggests that no position could ever satisfy the severe standards applied here. One is left wondering on what grounds the author herself could possibly stand and build her own argument. This points to a central problem: Since she denies the strong moral motivation and engagement of her whole endeavor, Johnstone cannot acknowledge the normative basis of her own critique. She thus ultimately fails to appreciate its ethical relevance and to account for its ethical legitimacy. This is most unfortunate because it definitely is a cause worth fighting for—and there are good arguments to support it.