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A brief history of the Quality of Life: its use in medicine and in philosophy

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A brief history of the Quality of Life: its use in medicine and in philosophy e99

Medical humanities Clin Ter 2011; 162 (3):e99-103

A brief history of the Quality of Life: its use in medicine and

in philosophy
M. Pennacchini1, M. Bertolaso1, M.M. Elvira2, M.G. De Marinis3
Institute of Philosophy of Scientific and Technological Activity, and 3Department of Nursing, University Campus Bio-Medico of
1

Rome, Italy; 2IESE Business School, Spain and Lexington College, Chicago USA

Abstract The use of QoL in medicine

The term Quality of Life (QoL) has been increasingly used in
The term QoL began to be used in the early 1960s fol-
medical and philosophical literatures for the past four decades. The
lowing changes in the health and the demographic profiles
purpose of this article is to analyze how QoL is being used in medicine
of “late modern” societies. Traditionally, public health has
and in philosophy to understand its current status.
been concerned, not to say preoccupied, with mortality. Pu-
In the 1960s and 1970s new technologies raised new questions for
blic health frameworks in the first half of XX century were
clinicians, so they used QoL as a parameter for making decisions in
developed and articulated to help cope with the complex
health issues. Consequently, researchers focused their interest on the
patterns of “premature” mortality, and, to a lesser extent,
construction and testing of instruments designed to measure health
the incidence and prevalence of morbidity. In other words,
and QoL. However, all these instruments showed some conceptual
medicine focused its attention on quantity of life. In the
and methodological problems that made the use of QoL in medicine
1960s there emerged another issue: quality of life (1).
difficult. While some researchers considered QoL an “idiosyncratic
QoL was first mentioned in medical field by Elkington
mystery”, others believed that QoL was useful in implementing the pa-
(2) in 1966. In an editorial titled “Medicine and Quality of
tient’s point of view into clinical practice and they suggested improving
Life”, he pointed out that new technologies, particularly the
QoL’s definition and methodology. In the 1980s, some consequentialist
procedure of chronic dialysis and transplantation, raised new
philosophers used QoL to formulate moral judgment, in particular they
questions for clinicians, e.g. how does a physician protect
justified infanticide for some severely handicapped infants, and both
the proper quality of life of an individual patient? How can
euthanasia and suspension of life-sustaining treatment using QoL. In
the quality of life be improved in other patients in the future
the 1990s, welfarist philosophers opened a new debate about QoL
without jeopardizing that of the particular patient through
and they associated it with health and happiness. These philosophers
whom this new knowledge is gained? Into which programs
developed QoL and those other concepts as subjectivist notions; con-
of preventive and therapeutic medicine should the resources
sequently their definition and their measurements pose challenges.
of society be put to achieve most in health and quality of
Afterwards researchers’ interest in theoretical issues regarding QoL has
life for all members of that society?
fallen; nevertheless, physicians have continued to use QoL in clinical
In the 1970s the term QoL started to be used in medicine
practice. Clin Ter 2011; 162(3):e99-103
as noted by Sharon Wood-Dauphinee (3); in 1977 QoL be-
came a keyword in the Medical Subject Headings of the US
Key words: epistemology, medical decision, moral judgment,
quality of life, philosophy of medicine National Library of Medicine MEDLINE Computer Search
System. When QoL was introduced (Year introduced: 1977
(1975)) among the MeSH (Medicines Subject Headings), it
Introduction was defined as “a generic concept reflecting concern with
the modification and enhancement of life attributes, e.g.,
Since the early 1970s, interest in the quality of life (QoL) physical, political, moral and social environment; the overall
concept has increased significantly in clinical practice and condition of a human life” (4).
research. QoL has been of paramount importance for eva- During the 1970s physicians used QoL for making deci-
luating the quality and the outcomes of health care. Despite sions in health issues. Medical practice has always involved
its importance, there is still no consensus on the definition dilemmas, tragic or painful choices. In fact, innovative (5)
or proper measurement of QoL. The purpose of this article and aggressive therapy/treatments (6) have successfully ex-
is to analyze how QoL is being used in medicine and in tended length of life (7), thus generating increased demand
philosophy to understand its current status. for the evaluation of the quality of the time that has resulted

Correspondence: M. Pennacchini, FAST - Istituto di Filosofia dell’Agire Scientifico e Tecnologico, Università Campus Bio-Medico di Roma,
Via Alvaro del Portillo, 21, 00128 Roma. E-mail: [email protected]
e100 M. Pennacchini et al.

from increased life expectancy (8). The sacrifices required interest in QoL, consensus on its definition remained absent.
for increased length of life (9) and the side effects associated Researchers did not build a conceptual model or a theory
with some therapeutic procedures (10) have highlighted the as a foundation for the construct of QoL that would allow
need to consider not only survival, but also the QoL (11) of explaining relationships among its components. The field
a human being after innovative surgery procedures (12). had been severely criticized for the lack of science in QoL
In addition, with the introduction of innovative tests such research, which obscured the understanding of what was
as prenatal diagnosis (13), physicians used QoL to assess being measured and what it meant (31).
which fetuses to abort (14). In 1994, Albrecht (32) wrote that theoretical work has
In the 1980s, QoL began to be considered as a means lagged behind instrument development and validation be-
of guiding decisions about whether to limit treatments (15) cause QoL research has largely developed inductively. So,
and select from patients both adults (16) and children (17); in the mid-1990s there was a renewed attempt to define QoL
simultaneously, as health care resources were allocated with greater precision.
(18), QoL issues took on additional importance (19). In It must be noted that changes in the concept of health,
those years the impact of an expanding range of treatments which had occurred during the second half of the 20th century
to many different groups of patients required more syste- had deeply affected and modified the idea of QoL: the concept
matic evaluation, in terms of efficiency and effectiveness. of health had undergone major changes, passing from nega-
Health care had become both more extensive and expensive. tive health measures such as the “five D’s” - death, disease,
Attempts were made to consider the outcomes of care based disability, discomfort, and dissatisfaction -, towards more
on broader definitions of health status (other than merely positive domain and features (33). World Health Organization
recovery or survival) and QoL (20). (WHO) definitions of health and QoL are positively-oriented:
QoL measures moved from being research issues for health is considered “a state of complete physical, mental
economists and others, to being explored by managers and and social well-being and not merely the absence of disease
the new specialists in public health medicine as potential or infirmity” (34). And from this new perspective on health
considerations to guide health policy. Instead of providing have stemmed more positive measures aimed at assessing
more resources to meet needs, a better quality of services health and disease. These new health measures have, in turn,
could be aimed at, within properly managed budgets. Instead affected the concept of QoL, which was defined by WHO in
of clinicians rationing by restricting treatment to individuals, 1995 as individual’s perception of their position in life in the
or groups such as the elderly, new priorities could now be set context of the culture and value system in which they live
(at least theoretically) with QALY-type measures helping to and in relation to their goals, expectations and standards and
define “best buys” (21). Discussion of the Quality Adjusted concerns. It is a broad-ranging concept affected in a complex
Life Year (QALY) had been utmost extensive (22). The way by person’s physical health, psychological state, level
debate about QALYs (23), and their possible use (24), was of independence, social relationship, and their relationships
part of the second wave of managerialism that developed to salient features of their environment.
from the mid 1980s onwards. Despite these wide-ranging definitions provided by the
Consequently, researchers focused their interests on the WHO, there was no generally agreed definition of QoL (35).
construction (25) and testing of instruments (26) designed to Moreover, in the same years, researchers thought over
measure health and QoL (27). Medical social scientists faced the QoL theme (36) and questioned whether it could be
major methodological challenges in developing a measure measured at al. (37). Some believed that variability across
of QoL. The investigators had achieved a consensus on the cultures, between patients, and in the same patient over
relevant factors of QoL among physicians, nurses, patients, time made efforts to define the term QoL impossible. They
family and others who were concerned about the patient. The considered QoL as an “idiosyncratic mystery”, so they
academic study of the patient’s QoL received considerable thought that physicians and economists should avoid QoL
attention, but it generated a controversy about the relevance assessment (38).
and feasibility of such investigations (28). Instead, other researchers believed that QoL was useful in
Advocates of QoL research pointed out that it would be introducing the patient’s viewpoint into clinical practice and
the final common pathway of the health care effort, and that decision processes (39) and others proposed a new method
some refocusing of the goals for health care delivery away for generic measuring of global QoL (40). The idea that the
from assessment of laboratory results and toward functional patient’s perspective is as valid as that of the clinician when it
outcomes in patients was necessary, if society’s health was comes to evaluating outcomes had a great deal of legitimacy
to be maintained. and should certainly not be abandoned. QoL represents a
The development of new measures continued through valid attempt to get over merely quantifiable issues to look
the 1990s. During these two decades methodological rigor more attentively into the needs of each person. Therefore,
improved in the development of psychometric properties’ these scientists believed that future efforts should aim to
measurement (29). First, scientists developed generic and improve QoL definition and methodology and diffuse it
multidimensional questionnaires to acquire broad infor- into clinical settings.
mation on large groups of patients. Then, they developed
disease-specific questionnaires aimed at evaluating the
functional abilities of patients (30). The use of QoL in philosophy
At the same time, these questionnaires showed still some
conceptual and methodological problems that made it diffi- Consequentialist philosophers introduced the term QoL
cult to use QoL in medicine. In fact, despite such increasing into the philosophical debate in the 1980s (41). However,
A brief history of the Quality of Life: its use in medicine and in philosophy e101

according to Fagot-Largeault (42) “only two types of con- wrong when it is not (53). In other words, in cases where a
sequentialism are interested of QOL: the hedonism and the decision is made to allow a human being to die, it must be the
welfarism, since they have also considered questions about case that death, and not continued life, is in the person’s best
health and well-being of human being and of animals, the interests (54). It does not mean a calculation of the probable
other approaches have considered questions of political phi- economic costs of long-term care to the family or State, as
losophy”. Helga Kuhse, a hedonist philosopher, opened this Enghlhardt proposed (55). Doctor and relatives debating the
debate arguing against the doctrine of “the sanctity of life” treatment options for a person are primarily concerned with
(43), against the application of acts and omissions doctrine the kind of future life they want for him/her in the person’s
in medical practice, and against the common assumption own interests (56).
that there is a crucial moral difference between intentionally In the 1990s, physician’s renewed interest in QoL - its
discontinuing ordinary medical treatment and intentionally definition, and its applications for purposes of assessment
discontinuing extra-ordinary medical treatment (44). She and measurement in social and medical contexts - opened
argued that intentional acts or omissions which shorten life a new debate among welfarist thinkers in northern Europe.
are in practice, and must in theory be justified or rejected These philosophers associated QoL with the concept of
on the basis of QoL. Such QoL distinctions are needed in health and happiness, so talking about QoL, as about health,
practice but they are logically incompatible with the doctrine is often equivalent to talking about happiness. Specifically,
of the sanctity of life; and the ordinary/extraordinary means Nordenfelt (57) considers happiness conceptually connected
distinction does not circumvent this incompatibility (45). with the attainment of the agent’s purposes. QoL coincides
Helga Kuhse and Peter Singer examined the debate over with the individual’s ability to pursue vital purposes in nor-
infanticide for some severely handicapped infants (46) and mal circumstances, necessary and enough purposes to reach
asserted that on QoL grounds it is sometimes justifiable a minimum of happiness. People have a good QoL when he/
to end their lives (47). To ignore QoL considerations is to she gets what he/she wants. If the concept of happiness is
ignore the practical realities of caring for infants with se- directly connected to that of health, a person would be com-
rious impairments, devalues the importance of compassion pletely healthy if, and only if, he/she has the ability, given
in medical decision-making and reduces the doctor’s role to standard circumstances, to reach all his/her vital goals.
that of technician seduced by modern treatment imperatives Then, in 1994, Nordenfelt (58) suggested a characteri-
and uncaring about the possible adverse consequences for zation of a concept of QoL which could, potentially, serve
infant and family (48). The consequence of this view for the as a conceptual basis for the construction and evaluation of
medical profession is that doctors have generally adopted the instruments designed for the measurement of QoL. It is a
position that they have a primary duty to act in their patients’ subjectivist concept, in fact identified with happiness-with-
best interest (not in their patients, good) (49). Therefore, life. However, he notes that happiness, and therefore QoL
from this perspective, there are some lives so impoverished thus understood, are subjectivist notions, whose measure-
or filled with pain and suffering that it would be rational, and ment is very difficult, if not impossible.
in a patient’s best interests, to choose death (50).
In the mid-1980s a liberal thinker, Hugo Tristram Engel-
hardt jr., get interested in QoL (51). Liberalism emphasizes Conclusions
individual rights and equality of opportunity, so Engelhardt
considered QoL as a tool of this liberty: for example, it During the last four decades, QoL has been increasingly
allows to evaluate whether to give birth to a baby or to stop used in biomedical and nursing research, although there is
the use of critical care units. Engelhardt aimed to define an no consensus yet on its definition and measurement.
algorithm to help appraise in an “objective” way the secular Physicians and nurses used QoL as a critical notion for
duties of beneficence toward individuals who need care. making decisions in health issues, so many QoL instruments
In the 1990s hedonists used these arguments and QoL to have been developed, but they are based upon different
justify not only infanticide for severely handicapped infants, conceptual interpretations.
but also euthanasia (52). Because a growing proportion of Philosophers also used QoL to formulate moral judg-
persons die in hospitals, in hospices or in homes for the ment: in particular, they justified infanticide for some
elderly, the management of dying was becoming less of a severely handicapped infants during the 1980s, and both
private matter. Powerful technological means for delaying euthanasia and the suspension of life-sustaining treatment
death were introduced even in cases of patients who were during the 1990s, based on QoL.
very old and/or very ill (e.g., suffering from metastatic cancer In the 1990s QoL instruments showed some conceptual
or Alzheimer’s disease). Thus, doctors and nurses wondered and methodological problems that made it difficult to apply
to what extent such persons could be denied the benefit of in medicine, so some researchers doubted that QoL could
medical interventions. be measured. On the other hand, others believed that QoL
When hedonists discussed QoL considerations and the was necessary to implement the patient’s perspective into
QALYs to justify decisions on whether to provide or to clinical practice and, consequently, suggested to improve
forego life-sustaining treatment, they focused on criteria to QoL’s definition and methodology.
determine which human being will live and which human Later, welfarist philosophers opened a new debate on
being will die. Put in terms of an approach that attempts to QoL, associating it with health and happiness. They deve-
locate the right - or wrong - making such treatment decisions loped QoL and other concepts as subjectivist notions, and
in the person’s best interests, this entails that a non-treatment consequently, their definition and their measurements are
decision is right when it is in the person’s best interests, and challenging.
e102 M. Pennacchini et al.

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