Nursing Perspectives on Quality of Life

Peter Draper

• Publisher: Routledge
• Year: 2005
• ISBN:
  9781134767724
• Edition: 1
• Topic: Medizin
• Subtopic: Gesundheitsversorgung

One of the fundamental aims of nursing is to safeguard or promote patients' 'quality of life'. In Nursing Perspectives on Quality of Life, Peter Draper examines existing ways of defining the concept and argues that nurses need to adopt a fresh approach, which more accurately reflects patients' concerns and helps them to develop practical ways of promoting the well-being of people in their care.The text provides an analysis of statistical approaches to quality of life, including social indicators, the Quality Adjusted Life Year (QALY), and the medical outcomes literature. The author proposes an alternative, qualitative approach to organising care, which respects the patients' choice and individuality and presents the findings of new research into the quality of life of older people in hospital wards.Combining original research and a critical analysis of existing models, Nursing Perspectives on Quality of Life is suitable for students at undergraduate and postgraduate levels.

PART I

The concept of quality of life and its use in health research

Chapter 1

Introducing quality of life

There is considerable interest in the concept of quality of life among nurses, medical practitioners, researchers, health economists, and many other groups who work in and around the health services. Their interest reflects more general debates about the meaning and relevance of quality of life in fields as diverse as medical ethics, where the concept is related to arguments about euthanasia and abortion; environmental ethics; and moral issues in law such as crime and punishment. Politicians also frequently refer to the effect that their policies will have on the quality of the lives of their constituents and the nation at large. It is surprising that such a widely used concept, to which reference is made in the literature of so many academic disciplines, should be difficult to define in a satisfactory way; but the assumption with which this book begins is that the meaning of quality of life is vague. Indeed, many researchers in the field do not bother to discuss its meaning at all. In my view, the situation that exists today is similar to that described by McCall in 1980. McCall suggested that far from knowing what quality of life is, we do not even know what category of thing it is. He suggested that researchers are unable to decide whether it is a state of mind or a state of society, and are unclear as to whether its definition varies from person to person, from culture to culture, and from place to place. He also notes important differences of opinion about whether, and how, quality of life can be measured.

Generally speaking, it is useful to divide researchers in the quality of life field into two groups. Members of the first group subscribe to what can be called the ‘social scientific’ approach. They tend to regard quality of life as a rather concrete phenomenon which is present in people’s lives to a greater or a lesser extent. They believe in principle that quality of life can be measured, and often expend considerable effort in designing and validating scales to be used for this purpose. Many people who take this approach also believe that it is possible to change the quality of people’s lives (Romney et al. 1994). Medical practitioners, for instance, will argue that their treatments have a beneficial effect on their patients’ quality of life, even when they make no discernible difference to patients’ length of life; and they try to demonstrate this difference through evaluation research. In the same way, politicians will argue that the net effect of their policies is an increase in quality of life, and may fund social research in an attempt to show a sceptical electorate that this difference really exists.

The second group of researchers takes a very different, rather philosophical approach to quality of life. Their thinking can be traced back to the work of Aristotle, the ancient Greek philosopher. The writings of Aristotle contain the word ‘eudaemonia’, which has often been translated as ‘happiness’ but which contemporary scholars tend to translate as ‘human flourishing’ (Den Uyl and Machan 1983). This approach to quality of life can be called ‘eudaemonistic’. It is concerned with the nature of human beings and their social environment (Aiken 1982); and it seeks to identify conditions in which human beings can flourish.

Most of this book is roughly split between these two approaches. In Part I, we examine the social scientific approach in some detail. Because the literature in this field is so extensive, it is important to approach it in a way that is at once systematic and selective, so that important themes and debates can be identified. Three specific aspects are discussed: social indicators research (Chapter 2); the quality adjusted life year, or QALY (Chapter 3); and medical research which uses quality of life as an outcome in clinical trials (Chapter 4).

The social indicators literature is discussed because it represents probably the earliest systematic attempt to define and measure quality of life. It refers to a number of fundamental issues found throughout quality of life research, including the following:

• Should quality of life be regarded as a subjective or an objective phenomenon?
• Can quality of life be measured?
• Can the quality of people’s lives be improved if the correct actions are taken?

QALYs and medical outcomes research both represent the application of quality of life to health. The QALY literature suggests that quality of life data can be used to inform resource allocation decisions in the health service, and examines the ethical issues created when this is done. The medical outcomes literature clearly illustrates some of the practical problems associated with the measurement of quality of life in the context of empirical research. Chapter 4 summarises a number of common themes that are found throughout the quality of life literature and discusses the relevance of the social scientific approach for nursing practice.

Chapter 2

Social indicators of quality of life

The social indicators movement is a good place to begin our examination of the social scientific approach to quality of life. This is because scholars working in social indicators research were the first to attempt to measure the concept and to map its attributes and distribution among the population. This literature describes a series of classic debates that characterise a great deal of quality of life research, as shown in Box 2.1.

Box 2.1 Key debates in quality of life research

• whether quality of life is best seen as a subjective or an objective phenomenon;
• whether it is a characteristic of individual people or of populations;
• whether or not it is amenable to manipulation and change by a third party.

The first systematic quality of life research was probably conducted by the ‘political arithmeticians’, a group of mathematicians, chemists, naturalists and others from the natural scientific tradition who worked in the nineteenth century, and who became convinced that the intellectual tools of their scientific disciplines could be applied beneficially to some of the social problems that existed in their day. Although they would not have used or recognised the term ‘quality of life’, their work made possible a number of pioneering surveys of poverty in nineteenth-century England (Lazarsfeld 1961).

Modern research into social indicators of quality of life was also anticipated by Otto Neurath, a Marxist philosopher (Callebaut 1978). Neurath criticised the economists of his day for using vague and rather general terms such as ‘the greatest good for the greatest number’, ‘the standard of living’, ‘the general welfare’ and ‘the good of the people’ when evaluating the impact of economic policy on people’s lives. He suggested that it ought to be possible to correlate people’s social circumstances with an index of their standard of living, and then to investigate how the two are linked. In this way, he hoped that it would be possible to identify the economic ‘inputs’ that would lead to the desired ‘output’ of a good standard of living or quality of life. Neurath’s work is remembered not for the impact that it had at its time, but because it has implications that are very familiar to modern quality of life researchers. Many quality of life researchers in medicine, nursing and the healthrelated disciplines believe that if you get the ‘inputs’ right by treating patients in a particular way, for instance, you can bring about the desired ‘output’ of a life of quality. A good deal of quality of life research is concerned with being able to measure the quality of life accurately and so to identify those treatments that are most effective in promoting it.

Neurath’s ideas had little impact in his own day, but the attractive concept that it might be possible to quantify quality of life, and relate it as an outcome to public and economic policy, re-emerged in the 1960s. A social psychologist named Raymond Bauer then became interested in the impact that the NASA space programme was having on American society. In his preface to Bauer’s book, Gross (1966) expressed many of the arguments which the social indicators movement was to take for granted.

Gross criticised American policy makers for over-emphasising conventional indicators of economic performance such as the gross national product (GNP). As Callebaut (1978) suggests, GNP is useful as a measure of economic activity, but it disregards the things that money cannot buy, and the quality of goods and services produced; and it does not take into account the social costs arising from production. Gross went on to criticise the emphasis that American policy makers were placing on cost-benefit analysis, and their assumption that all meaningful benefits from government programmes could be expressed in dollars and cents. He proposed a shift in emphasis from economy to society, suggesting that, for many of the important topics on which social critics pass judgement, there are no yardsticks for measuring whether things are getting better or worse.

Gross, like Neurath before him, appears to have been frustrated by the economists’ inability to measure inputs and outputs in a clear way in order to relate economic and social policy to quality of life; and once again, his attitude is reflected in modern quality of life research in medicine, and its desire to measure the quality of life with ever greater accuracy. This desire depends on various assumptions: that it can, in fact, be measured; and that the world is regular and predictable to some degree. These and other assumptions will be discussed in more detail below.

In America, President Johnson was sympathetic to arguments of the kind that Gross put forward, and he established a Panel on Social Indicators, consisting of social scientists and politicians, to explore new approaches to social accounting (Moberg and Brusek 1978). In its first report, this panel argued that the American nation had no comprehensive set of statistics to reflect social progress or decline, and it noted that there was a marked discrepancy between economic indicators, such as statistics on national income and retail prices, and evidence of social discontent, such as increasing street crime and the apparent alienation of young people. Social indicators were proposed as a way of monitoring the social condition of the nation, so that politicians could make appropriate decisions about economic and social policy.

It is important at this point to note that social indicators research emerged from a political concern with certain social and economic phenomena, and that social indicators themselves were designed to be of use to politicians in the formulation of policy. This is significant because it is sometimes argued and more often assumed that quality of life indicators of all kinds are essentially neutral, in that they do not embody a particular ideology or set of beliefs. One of the key aspects of the critique of the social scientific approach to quality of life, outlined below, is that quality of life measurements are never neutral, because the data they provide are invariably employed in a political debate of some kind. Sometimes, as in the case of social indicators, the outcome of this debate determines policy directions, while at other times the data are used as a basis for resource allocation decision. The political context of quality of life research often has a direct effect on the formulation of the indicators used to measure quality of life. This fact makes it difficult to sustain the view that measures of quality of life can ever be objective or ‘value free’.

The early literature of social indicators of quality of life is often divided into two contrasting approaches: objective and subjective (Andrews 1974). Each of these is now discussed in more detail.

Objective social indicators

The objectivists assumed there was a cause-and-effect relationship between quality of life, the consumption of public and market goods, and aspects of the physical environment. They advocated collating crime rates, population density figures and the level of public service provision, to give an ‘objective’ index of quality of life in a given population. This was the approach taken by Gehrmann (1978), who suggested that quality of life studies should concentrate on infrastructure facilities such as education, health and recreation, and those parts of the social domain which are ‘measurable in objective terms’. He proposed to include data on crime, safety, social participation, social disintegration and unemployment. His work makes it easy to recognise one of the principal difficulties with this approach. Far from being objective, the measurement of many of these phenomena is highly contentious. The definition and measurement of unemployment, for instance, are matters not of objective fact but of political debate informed by ideological perspective.

Another researcher who took the objectivist approach is Liu (1975), whose work illustrates a number of further difficulties. Liu argued that the quality of life of an individual is the sum of a set of ‘wants’, whose satisfaction makes the individual happy. He considered that the things which make people happy can be placed into two groups: physical and spiritual. Physical things included quantifiable goods, services, material wealth, etc., while spiritual things included psychological, sociological and anthropological factors such as community belongingness, esteem, self-actualisation (see below), love and affection. Liu omitted the spiritual concerns from his approach to quality of life because he was unable to measure them, thereby ending up with a definition of quality of life restricted to a number of physical inputs consisting of social factors (individual status, individual equality, and living conditions); economic inputs (economic status, technological development and agricultural production); and political inputs (health and welfare provision, educational development and government).

Liu’s approach contains a number of difficulties:

1. He defines quality of life in terms of happiness, but does not then discuss the meaning of happiness beyond saying that it is contingent upon the satisfaction of a range of wants. Other researchers have considered the nature of happiness in more depth. Historically, the meaning ascribed to the term has varied, from an internal psychological state akin to euphoria, to wellbeing. This debate will be explored more fully below when we look at subjective approaches to quality of life.
2. The approach is at odds with those who relate quality of life not to wants, but to needs, as does McCall (1980). He argues that ‘wants’ are a poor basis for defining quality of life b...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Tables
• Acknowledgements
• Introduction
• PART I: The concept of quality of life and its use in health research
• PART II: Quality of life and nursing practice: philosophy and methods
• PART III: Quality of life: a nursing perspective
• References