Let us begin with a quote from the Introduction (p. vii):
This book is the final fruition of a research project into the allocation of healthcare resources which was funded by the European Commission between 1993 and 1996. […] The underlying question that the ‘Ethical QALY’ group debated repeatedly […] was not simply whether quality of life measures could be used in the planing and reform of a healthcare system, but whether they should be so used.
There is then an independent page (p. xi) between the Introduction and the list of contents which is entitled: ‘What is a QALY?’ The 10‐line text which follows tells us that:
The basic thinking behind the QALY is that health has two main dimensions: length and quality […], but throughout this book the term ‘QALY’ is used as a general expression of health achievement.
A glance at the list of contents that follows suggests that the overall structure of the book goes like this: resources are finite and therefore choices must be made; in order to make choices, the objectives of health care must be made clear; one of its main objectives is to enhance health; therefore, to make the choices, health must be quantified; which leads to the discussion on how this can be done in a technically and ethically satisfactory way.
Both the overall objectives and the general structure of the main body of the book seemed straightforward to me, until I actually began reading the text. As I read on, I encountered several stumbling blocks. The first serious one was in Chapter 2. A QALY is a number‐of‐life‐years‐with‐HRQOL‐weights‐attached. HRQOL (health‐related quality of life) weights are quantifications of different levels of health on an interval scale with 1 for full health and 0 for death. So why does Chapter 2 of a book on QALYs discuss a series of quality of life measures with which HRQOL weights cannot be derived (because they do not collapse the multidimensional profile into one number on an interval scale), and which, therefore, have nothing to do with QALYs the way I used to know them? The answer lies in the definition of QALYs used in this book, quoted above, but then how does this relate to the subtitle of the book: ‘Ethical Issues in Healthcare Resource Allocations’? Quality of life measures that do not offer a single number to represent a given health state have a severely limited role to play in resource allocation, and the unconventional stretch given to the term QALY is difficult to accept.
My second stumble was when I realized that I was not quite sure what exactly was meant by several key terms, the most important of them being ‘the QALY approach’ and ‘the QALY methodology’, which as far as I could tell were used interchangeably, but also inconsistently. Sometimes they obviously meant the numeric representation of health benefits (presumably including multidimensional profiles: p. 51 for ‘approach’ and for ‘methodology’), but at other times they meant the use of QALYs in resource allocation i.e. the use most probably of costs per QALY (in the conventional sense, p. 54 for ‘approach’ and p. 50 for ‘methodology’). The latter is something (a) to which I would have preferred to refer as the QALY maximization approach/methodology, and (b) which is not quite compatible with the contrived definition of QALYs supposedly employed throughout the book. To make things worse, the book does not offer an index that would have enabled me to look up possible locations at which to find definitions to these and other vague terms. However, the lack of an index is a minor issue, since my suspicion here concerns lax terminology. I knew very well where to find the definition for QALYs, but it did not help things much.
Personally, I believe that the most fundamental ethical issue regarding the use of QALYs in health care resource allocation is how to justify the mechanism whereby individual patients will be subjected to decisions made with reference to cost per QALY analyses that make use of values that do not necessarily reflect the preferences of the particular individual patient. This goes against the principle of autonomy presupposed and/or sanctified in major branches of bioethics. In the middle of a discussion on QALYs and ageism (yes, it is only QALYs in the conventional sense that could possibly be accused of ageism, so again the going definition of QALYs seemed too contrived, but this is not the point that I wish to make here), there is a passage which reads (p. 67; also see p. 65 foot note): ‘QALYs are not designed to prioritise between individual patients, but rather the funding of treatments.’ Not only will this manage to circumvent for the time being what I believe to be the most fundamental ethical issue involved, but it will also lead on to a whole series of other questions. Upon what, then, is prioritization between individual patients to be based? The implication must be that individual patient prioritization is to be based on something other than QALYs (in whichever sense), for example severity and/or non‐health attributes, and, if so, why are patients and treatments prioritized according to different criteria? Is the restricted use of the QALY a result of some technical limitation, or is it due to an ethical consideration? Prioritizing amongst treatments for different conditions will involve prioritizing amongst different patients, but what is the crucial difference between the type of patient and individual patients? Is it indeed ethical to distinguish between these two types of patients? Also, in a more philosophical context, what is the underlying relationship between the individual as a patient, the individual as a citizen, and society? Some references to ‘contractarianism’à la Menzel (the ‘QALY bargain’) and a brief exposure of discourse ethics are the closest the book will get to these issues, but both of these topics deserve far more extensive discussion.
In summary, either the book has the wrong title to go with the text, or it has the wrong text to go with the title. If you are already relatively happy that we have QALYs (in the conventional sense) to help us think about health care resource allocation issues rather than being left in the dark, or if you are entirely unhappy that something so unethical as QALYs should be meddling with health care decision making, or if you are unsettled as regards your level of happiness with reference to QALYs in this context, then reading this book is unlikely to affect your level of QALY‐related happiness whichever way. At the end of the day, the book is commendable to all those who are looking for a quick introduction to the state of play regarding health care priority setting in Greece, Slovakia, the Netherlands, the Czech Republic and Slovenia: something with which the appendices (which cover a good one‐quarter of the book) deal, with hardly any reference to the QALY (in either sense) or to its ethical status.
Edited by Mark Sculpher