Alzheimer’s Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society by Megan-Jane Johnstone (review)

This well-researched and well-written book could not have come at a more opportune time for Canadian readers. It is relevant to scholars in the fields of aging, palliative care, dementia, ethics, and law as well as members of the general public who are facing the difficult decisions which are the topic of this book.

Not a week – sometimes not even a day – goes by without an article or survey released in the popular media, or in health care professional circles, about the two main topics which intersect so dramatically and are the reason this book is so timely. First, the rapidly aging population is well-known to almost anyone who has any interest in current societal trends. Media sources and pundits in the fields of economics, sociology, and clinical health care focus heavily on the often-deemed dire results of this unfortunately named “silver tsunami”. That such a negative descriptor is often used to describe the aging population (which one could otherwise construe as one of the great miracles of modern medicine) has moulded the conversation about aging’s potentially dire economic and social impacts on contemporary or near-future society.

The second topic that intersects with aging is the other very vividly described challenge to current societal actions and norms: the acknowledged increase in prevalence and incidence of dementia. In many ways, this is the natural accompaniment of increased longevity, given a strong association between aging and dementia prevalence, in all Western societies for which such data are available. Increased societal vulnerability to dementia should be considered in the context of an emphasis on an autonomy paradigm as an ethical framework for health care decision-making. This paradigm (principlism) emerged in the 1970s with the publication of the first edition of Principles of Bioethics by Beauchamp and Childress (1979) from Georgetown University. Prior to this, the primary foci of ethical decision-making was based on a combination of beneficence and non-maleficence; from this point, the principle of autonomy very rapidly became the overriding ethical principle especially in North America, probably for cultural, historical, and some might say anthropological reasons: in America, especially, the locus of decision-making more broadly has always been centred on the individual rather than the collective (i.e., society).

Herein lies the premise of the book – the coming together of what is often deemed to be the “worst of all illnesses” and a loss of autonomy. Dementia is often characterized in the most negative manner – often worse that what previously had been thought of as the “worst” disease states such as cancer. Furthermore, it is increasingly characterized as worse than even what otherwise was thought to be the ultimate in “bad” (i.e., malignant disease). One often hears of it characterized as “dying while alive”, “a slow death”, or a “the loss of self”; for those who cling to and treasure their cognitive being as key to their identity, this can be deemed “a fate as bad as or worse than death” (Ofri, 2014). If indeed that has become or will become the model that dementia is seen to represent, and for which there is no immediate “cure” on the horizon, it is not surprising that many people view dementia with a sense of impending doom – and their loss of cognitive self and subsequent loss of autonomy as a dismal fate.

The author eloquently develops her thesis that the apparent ultimate act of “freedom” (the decision to die at a time of one’s choice, either alone or with help) is clearly attractive to those who believe that being in control of the time and nature of their death is their ultimate act of autonomy and selfhood, aspects which are threatened by the necessity of living wit h dementia and facing gradually cognitive and often behavioural decline.

Johnstone describes and dissects the...