INTRODUCTION 3

LENNART NORDENFELT

INTRODUCTION

1. DIMENSIONS OF THE GOOD LIFE

It is an interesting fact that there is so little consensus about the nature of

the good human life. It is equally interesting but also disturbing that this
lack of consensus also holds for the modern scientific notion of quality of
life. The situation is particularly problematic since the notion of quality
of life is so well established, both in the health sciences and the social
sciences. There is now a whole industry producing instruments for the
evaluation of quality of life and these instruments are used for a variety of
purposes. But the instruments differ greatly. And the difficulty is not that
they differ in details and in focus, which could indeed be expected when
they are used for such a variety of purposes. The problem is that they
reflect different views about how the basic notion of quality of life should
be understood.
The problem described above has been known to philosophers and
theoreticians in the field for a long time. And although much has already
been written to clarify the topic, rather little has happened in the arena of
application. The production of instruments is still going on as if this
discussion had never taken place. Therefore, there is good reason for
pursuing the philosophical analysis of the topic and also for reminding
ourselves of the ethical consequences of assessing the quality of people's
life, not least in a situation where this kind of assessment is being made in
different ways in different settings and in different parts of the world. In
the present situation there is hardly a fundament for comparing reports
about people’s quality of life. Nevertheless if such a comparison is made,
the result can be disastrous.
The task of analysing the basic concept of quality of life has been
shouldered in this issue most evidently by Peter Sandøe and Dieter
Birnbacher, and it is referred to also in some of the other papers. Sandøe,
who completely focuses on the basic conceptual question, discerns three
age-old intellectual traditions within which the idea of the good life has
been interpreted in quite different ways. These three competing views are
perfectionism, viz. the idea that a person lives a good life when he or she
realises important human potentials; hedonism, viz. the view that the person

Ethical Theory and Moral Practice 2: 3–10, 1999.

© 1999 Kluwer Academic Publishers. Printed in the Netherlands.
4 LENNART NORDENFELT

lives a good life when he or she has certain pleasant states and is able to
avoid painful and unpleasant ones; and finally welfarism, or the idea that
the person lives a good life when the person manages to get what he or she
wants. These views indicate quite different ways to pursue the good life,
and as a consequence the ways by which we can judge the quality of a
person's life must be quite different.
But an important question of course is for what purpose we are
investigating the nature of the good life. Perhaps the context can help us
in assessing this matter. As Georg Henrik von Wright (1963) pointed out
in a classic work, there is a great variety of goodness. The goodness of a
good man is different from the goodness of a heart or the goodness of a
knife. And a person can be good in several ways. The person can have good
manners, his or her intellect can be good and he or she can be good at sports.
It is obvious that there is a multiplicity of dimensions of goodness. But is
it reasonable to believe that we can be asking questions concerning all these
dimensions in the discussion about quality of life?
A first observation of course is that we must concentrate on a dimension
pertaining to human beings. The people who request assessments of quality
of life, for instance politicians and researchers within medicine and the
social sciences, are asking for the quality of the life of a human being.
Moreover, the quality should concern the human being as a whole. Still,
the quality of life, when we focus on medicine and social affairs, does not
concern all aspects of a person. (For a discussion see Nordenfelt, 1994,
pp. 2–8.) The questions asked within these discourses do not, for instance,
concern the moral value of the person in question. Nor does one ask about
the aesthetic or intellectual values of the life of this person. I think it is salient
that the concern is rather about what could at least vaguely be called the
welfare of the person. Central in the quality of life discussion are questions
about how life (in the form of external and internal events) is treating the
person, and less central are questions about how the person lives his or her
life, in the sense of how the person plans life and makes choices in life. The
latter kind of questions would of course be particularly pertinent if the
discourse were to concern moral or intellectual aspects of life.
By somewhat narrowing the scope in this way, it seems as if perfection-
ism is a less plausible candidate for interpreting the modern notion of
quality of life. The traditional perfectionism, the classic version of Aristotle,
was an all-encompassing idea about the good life and it had a strong moral
foundation. Its basic tenet was that eudaimonia, the perfect life, mainly
consisted in the person's virtuous activity.
But even if we focus on welfare we are left with a broad concept. And
we can still dispute about what is the ultimate welfare. We can wonder
 INTRODUCTION 5

whether it primarily has to do with the possession of certain objective things

such as money, a job, freedom from political suppression, freedom from
disease etc., and we can wonder whether it primarily has to do with the
individual's judgment of his or her situation in these respects, or, finally,
we can wonder whether it has to do with the presence of pleasant mental
states in the subject partly resulting from certain external facts.
Observe that the answer to the conceptual question concerns whether
welfare consists in certain objective things, or in things preferred by the
subject, or in certain pleasant mental states of the subject. To take a definite
stand on this issue does not preclude that one observes the variety of empirical
connections between the three ontological categories. Two obvious such
connections are that certain external states of affairs, such as money and a
good job, are normally preferred by the subject, and that they normally
contribute causally to his or her pleasure. In such cases there is a congruence
in practice between the main theories. A judgment of the subject's quality of
life would in such a case be similar from whichever platform we judge. But,
of course, it is easy to see when the three theories can part company.
Much of the present discussion in medicine and social affairs on quality
of life focuses on choices between the three theoretical platforms, well
described in this issue by Sandøe. There seems to be a reasonable
consensus, however, that one should not ask for a purely objectivist
measure. This is easy to understand when we consider the rationale for
the introduction of the quality of life concept. (Cf. Birnbacher in this issue.)
The concept was introduced in medicine as a supplement to ordinary
medical “objective” judgments of people's health. The doctors and the
researchers explicitly wanted to know whether the alleged improvement
of a heart or a lung had really improved the life of the individual. The
objective anatomical and functional measure had always been there. Now
there was a desire for information that surpassed this basic biological
knowledge. The new knowledge might still contain certain objective
features, but then on the molar level of the person. It could concern his or
her abilites, such as the ability to walk or use one's hands. But the new
knowledge should also include certain mental features of the person such
as his or her preferences, attitudes and emotions. This story entails that
the shift within medicine into talking about the quality of a person's life
(from roughly a welfare point of view) meant a step away from an
exclusively biological objectivistic position.
Similarly, the notion of quality of life was introduced in social policy
as a supplement to the welfare studies in terms of people's living standard
which had so far been prevalent. A good example of this type of study is
the Swedish Annual Surveys of Living Conditions, where facts concerning
6 LENNART NORDENFELT

work, income, housing, education and social mobility are characterised with
the help of statistical data. (Living Conditions and Inequality 1975–1995,
Report 91, Statistics Sweden.)

2. THE NATURE OF QUALITY OF LIFE AS WELFARE

The ontological question in the quality of life discussion could therefore, I

suggest, be formulated in slightly more precise terms than the ones suggested
by Sandøe, viz., for instance: What is the nature of the goodness of welfare?
One could then ask: What are the reasons for preferring one sense to the
other? What should our criterion for choice be? Should we make an ordinary
language analysis of the general concept of welfare and ask for our intuitions
about this concept? That is what Sandøe does to a great extent, but he does
not present a conclusive recommendation. Or, should we analyse the contexts,
the medical and the social context, in the utmost detail and see what kinds
of measure one is actually asking for? This seems to be the method advocated
by Birnbacher in this issue. Researchers in the field of medicine and social
affairs have for a long time been using traditional medical and social indi-
cators for measuring people's health and welfare. Now they want to know
how people themselves assess their lives. There is, Birnbacher asserts, really
a call for the subject's own assessment of his or her health or state of welfare.
If the latter is the case the question has been purified and the theoretical
problems have been considerably diminished. In the case where the term
“quality of life” indeed means, and should be interpreted as, the subject's
assessment of his or her situation, the basic conceptual problem has come
much closer to its solution. However, there are significant remaining
problems and they are not just technical. Let me just mention two major
problem areas. The first concerns whether the subject is asked to assess
his or her situation in the sense of describing the situation in as neutral
terms as possible, or whether he or she is supposed to evaluate it in
normative terms. To put it concretely: shall the subject say: I cannot move
around as much as I could before; or shall he or she say: my present
disability makes my life miserable. It is clear that the same “objective”
disability can mean quite different things to different people. The second
major issue concerns the question whether quality of life-measures should
be partial or total. Should the subject assess his or her total state of health
or the total situation of welfare or just certain relevant parts? But can the
parts be isolated? Is it reasonable to try to isolate parts of life?
Birnbacher argues strongly in this issue for adopting a subjectivist and
preferentialist interpretation of quality of life. He says first that this choice
 INTRODUCTION 7

is natural since a subjectivist notion is largely independent of changing

social and cultural values. He says that “the more the concept of quality of
life is analysed by objective characteristics, the less likely it will be
applicable independently of specific cultural norms and ideals” (p. 30).
Birnbacher adds another quite pragmatic reason. He says that a subjectivist
notion is preferrable because test instruments must ultimately be based on
people’s evaluations. This means moreover that the instruments ought to
be individualised to a much greater extent than they are now (p. 33).
An interesting ethical argument for adopting a subjectivist notion of
quality of life can be found in Birnbacher's paper. There is an anti-
paternalist potential in a subjectivist notion. It is much more in line with
respecting the autonomy of the patient to ask how the patient finds a
particular treatment to be or how the patient in general judges his or her
state of health to be. It is indeed difficult to involve the patient in decisions
about treatment, as the principle of autonomy requires, unless the patient
has made his or her own self-assessment with respect to health.
There is an important set of arguments, then, for adopting a subjectivist
or preferentialist notion of quality of life in the contexts of medicine and
social affairs. And indeed there are several theoreticians in the field who
make this interpretation and who have consequently constructed measuring
instruments based more or less exclusively on such a concept. (For instance
The General Well-Being Schedule and The Quality of Life Index,
McDowell and Newell, 1987, pp. 125–133 and 209–213.)
It is however salient that most instruments used, in particular for measure-
ments in health care, are much less clear in their conceptual underpinning.
They normally contain a substantial element of subjective assessment (either
in the hedonistic or the preferential sense). But in addition to this one can
often find elements of an objective kind within them, for instance in terms
of objective symptoms or disabilities. (Compare, for instance, the modern
instrument EuroQuol, Williams 1995.) It is indeed true that it is often the
subject who is asked to make the “objective” assessments about his or her
symptoms or abilities. On the other hand the subject is rarely asked to evaluate
the impact of this symptom or disability. The person is not asked whether the
symptom or disability is particularly disturbing for his or her way of living.
One can then wonder what the constructor of such an instrument thinks
that he or she is doing. Does the constructor believe that it is not necessary
to be clear about the basic concept? Or does he or she think that there is
a merit in “mixing” concepts in one and the same instrument? Or is there
a more sophisticated answer like the following? There is one basic
(subjective) concept of quality of life reflected in the instrument. The
questions in the instrument must however sometimes be formulated in
8 LENNART NORDENFELT

semi-objective terms in order to catch the relevant judgments of the

subject.
The authors in this issue who comment on the conceptual matter (Sandøe,
Birnbacher and Fitzpatrick) agree that the underlying concept should be clear
and that there should be a consistency and congruence between the concept
adopted and the instrument used. Sandøe concludes that the researcher must
adopt an “assumption about what, in the context of the given research, is
meant by quality of life. Moreover, ideally the researcher ought to be aware
of any problems and limitations of this assumption” (p. 12). Birnbacher
notices the danger of using different concepts in different instruments and
of mixing concepts in contexts where comparisons are called for. “If
comparative statements and studies are based on divergent concepts, a
reference to quality of life would be misleading rather than helpful”, (p. 29).

3. THE REASONS FOR MEASURING QUALITY OF LIFE

What are the main reasons for measuring quality of life? Since the authors
who discuss concrete matters in this issue only deal with medicine and health
care I shall here restrict myself to this case. In this respect Fitzpatrick takes the
clearest stand. He says: “Because it is only meaningful to consider the ordinal
assessment of quality of life in relation to groups, quality of life measures
have their clearest role in clinical trials and related forms of numerical evidence
of outcomes of health care”, (pp. 39–40). Fitzpatrick makes two fundamental
claims, then: (1) Quality of life measurements should primarily concern groups
of people and not individuals as such. (2) The primary context for quality of
life assessment is clinical trials. Fitzpatrick even contends that clinicians do
not find the information from individual patients' quality of life scores
sufficiently clear for supporting decision-making regarding treatment. (Clinical
trials and the comparison between groups is the context within which also
Alan Williams performs his discussion in this issue.)
Birnbacher takes a radically different position. He says that “ in medicine
we are primarily interested in individual quality of life and not in the quality
of life of whole groups, populations and societies”, (p. 27). Birnbacher
maintains that medical indications and treatment decisions have to be
individualised along with quality of life assessments. Since different
individuals react so differently to medical technologies, treatment decisions
must be sensitive to these differing reactions. This means that clinical
medicine must be even more individualised than it has hitherto been.
Birnbacher does not, however, explicitly comment on clinical trials, which
must necessarily take the reactions of groups of people into account.
 INTRODUCTION 9

4. THE ETHICS OF QUALITY OF LIFE MEASUREMENT

To what extent is the assessment of quality of life an issue for ethics? The
answer is that there are several connections between the two fields of
inquiry. First, there is of course an ethical underpinning of the whole project
of measuring quality of life. Quality of life assessments have been
introduced to support and improve decisions within health care and social
affairs. Second, to the extent that quality of life measurements are used in
social and medical science, the nature of these measurements – their content
and the way they are performed – is an ethical concern. This means that
the study of quality of life measurements forms part of research ethics in
general. Third, and perhaps foremost, the use of the results of quality of
life assessments in social policy, clinical medicine and health promotion
is a deeply ethical affair.
Some of the authors touch on this latter topic. I have already mentioned
how Birnbacher observed the connection between respect for the patient's
autonomy and the careful scrutiny of this person's health-related quality
of life before and after treatments. But one author, Alan Williams, devotes
his whole paper to the possible use of quality of life assessments for public
health policy decisions.
Williams's specific purpose is to suggest an informal reference point for
judgments about distributive justice within a community. His starting point
is the observation that the reduction of inequalities in health is one of the
stated aims of public policy. Such a reduction is difficult to implement
because these inequalities are based on a number of things which cannot
be remedied by medicine alone.
In his discussion Williams uses the notion of quality adjusted life
expectancy (QUALE), which means the person's expected life-time
experience of health measured in so-called QUALYs. Williams's idea now
is the following: In order for a comparison to be made between individuals
and, in particular, in order to make morally justified distributions of health,
there must be a reference point, by Williams called “the fair innings”. This
reference point should tell us how many QUALEs a person is entitled to
achieve. If the number of a person's QUALEs is much below the reference
point then, in the name of justice, we should try to improve this person's
health. If, on the other hand, the number is well above the reference point
then there is much less moral warrant to support this person with health care.
This suggestion faces a great number of moral problems. Some of them
have already been the focus of much ethical discussion. Williams raises a
few of them again in his contribution. He observes, in particular, that in
10 LENNART NORDENFELT

order to reduce inequalities in health in an equitable manner, we must

usually discriminate against the old. This follows from the simple fact that
the older we are the more likely it is that we have already attained the “fair
innings”, i.e. the number of QUALEs that we are morally entitled to have.

CONCLUSION

The assessment of quality of life has come to stay both in health care and
in the social sciences. It has introduced a new and important point of view
to these fields of activity and research. It has also introduced a democratic
and anti-paternalist point of view to health care and social policy.
Politicians, researchers and doctors have become interested in how people
feel about, and what people think about, their health status or their social
situation. This entails in itself a radical, not to say revolutionary, change
in point of view. Thus, the quality of life discussion and the use of quality
of life assessments deserve deep ethical investigations. The contributions
in this issue give us some directions for such investigations.

REFERENCES
Living Conditions and Inequality 1975–1995, Report 91, Statistics Sweden.
McDowell, I. & Newell, C., Measuring Health: A Guide to Rating Scales and Question-
naires. Oxford: Oxford University Press, 1987.
Nordenfelt, L. (ed.), Concepts and Measurement of Quality of Life in Health Care.
Dordrecht: Kluwer Academic Publishers, 1994.
Williams, A., The Role of the EuroQuol Instrument in Qualy Calculations, Discussion
Paper 130. York: Centre for Health Economics, York Health Economics Consortium,
1995.
von Wright, G.H., The Varieties of Goodness. London: Routledge & Kegan Paul, 1963.

Department of Health and Society

Linköping University
Linköping
Sweden