[Table of contents]
The reasons behind my interest in this debate are manifold (1). First of all, every academic is involved in, and struggles with the complexity of the debate on methodology. Secondly, after a period of one and a half years in Ireland, working as a social scientist, I am somewhat surprised at the dominance of what can be labelled a positivist stance towards social science. This dominance includes a heavy emphasis on the method of survey analysis with the assumption that this is the only respectable method in social research. Thirdly, in my role as lecturer at the University and in supervising undergraduates and masters students, I feel that the issue of methodology is the cause of much uncertainty and confusion among students. Of course, this is not a specifically Irish phenomenon and, let me add, not one for students alone, but students in particular perceive this as a reflection on their personal competence and not as existing within the context of this debate's complexity. This is expressed in their arguments for choosing a qualitative approach, or in their feeling of being forced to take a stand in favour of one perspective in order to be a 'real academic'. At other times they attempt to avoid the problem altogether, by doing research without relating this to any theoretical frame of reference. The discourse on research methods and methodology is an ongoing one, that is time and culture dependent. Changing conceptualisations and disciplines are performing on ever changing stages. Paul Feyerabend introduced his thought provoking ideas in the '70s in Against Method, discussing the ideas of Popper, Kuhn, and Lakatos. Many times he was labelled as the anarchist who opted for a post-methodology 'avant la lettre'. He denies this labelling by explaining that his main aim was to show the constraints of both general and local theories. This is based on the assumption that for every rule and every standard, a case can be made which goes against that rule or standard. At the moment we are witnessing similar ideas introduced by 'feminist' scholars, although they vary in their perspectives on the role of methodology (Harding 1986).
To leave you disappointed from the outset, I cannot answer the central question of the conference with a simple yes or no answer. The question is open to debate on many levels, from the philosophy of science, to the use of qualitative interviewing. What I would like to state however, is that our thinking on the role of methodology in social science practice is a changing one. As an example of changing methods and discourses, I will use my PhD research 'A Living Language for Death and Dying'.
Changes of practice are, by definition, relative to a given. In this project I have identified 3 phases of innovation, highlighting different dominant discourses on death and dying. It is important to note that three discourses co-exist. Specific attention is paid to the way each phase constructs the dying person and his or her competence in relation to the care systems involved. It should be noted that this historical approach is not a historical overview per se. Other perspectives are possible and have been used (3). The aim here is, first, to facilitate our analysis of the current problematic interaction of death and dying, and second, to do so in terms of basic concepts which are strongly related to changes in our way of thinking about general issues such as research and organisation (4). In this paper I will focus specifically on the changes in social research practices in relation to death and dying.
The dominance of medical discourse plays an important role in the process of 'objectification', with the emergence of a change in the role of doctors, patients, and their relatives. We witness the birth of an 'evolutionary' model of dying, "natural death". Charmaz discusses critically the 'natural death' concept, as a desire that death should occur at the correct time (during old age) and without inconvenience for any person involved (Charmaz 1980). During this period life expectancy increases, due to new drugs, improved hygiene, birth control and developments in medical technology, as well as an increase in accessibility to medical care. It should be noted that these transformations are interdependent, and they cannot be analysed as independent processes of change. The historical, cultural, and scientific context should always be taken into account.
Medical practice becomes a practice of science, wherein the disease becomes isolated from the personal history of the person involved. This research model is based on procedures of objectivity, isolation, modelling (attribution of identifiable characteristics) and prediction. De Zeeuw (1993) describes this method as a 'language of variables'. This method includes the 'scientific object' for repeated observation, to order the observations, describe patterns, and to test them for invariance over a number of 'relevant' objects. The ordering is implemented via such concepts as variables, relations between variables, conditions, parameters and the like. The researcher, in this model, must be able to generate statements which are independent of his or her personal characteristics. This language is known as the positivist perspective, and the research model is based on one actor, the researcher (doctor).
In this perspective the doctor has the right to take over. The dying person may be treated as a patient, that is, someone who can be cured. Medically speaking, dying becomes an unfortunate incident, totally unrelated to the psychological properties, the social history, and the ethical or religious convictions of the dying person. The dying process thereby changes substantially from what it was previously, a change which is also reflected in the institutionalisation and the professionalisation of care as well as in major medical/technological developments (see Cassell 1974). An increase in the length of life becomes the main objective. Based on the assumption "whatever can be done from a medical point of view is legitimate", a formal medical language (input-output model) evolves. In the language of Foucault (1972) this can be interpreted as part of a general process involving the exclusion of the 'irrational' in Western society; dying becomes a meaningless activity. (6) Within the medical discourse the dying person becomes a patient whose competence is defined in terms of obeying the rules of the medical system, accepting pain and acting as if he or she can be cured (see e.g. Shorter 1986). Speaking about death and dying becomes unacceptable within a medical context or interpretable as 'neurotic' behaviour.
The model of the doctor changes simultaneously. From the facilitator between God and patient ("I treat the human being, Nature cures him") the doctor becomes the "master of life and death" by using medically based, scientific procedures. Death and Dying become the 'natural enemies' of the doctor and patient (see e.g. Charmaz 1980 and Sontag 1977), and the death of the patient becomes a 'failure of medical practice'. Sontag refers to this transformation as being based on the front-line metaphor, while Foucault (1963) uses the machine metaphor as one of the key explanatory characteristics. "Desperate means for desperate diseases" becomes the guidelines for medical intervention. Lofland (1978) explains this process with the role of doctors as 'gate- keepers'. Doctors gain competence and authority in defining who is dying or not, and new rules for defining death are introduced, based on a distinction between clinical death and brain death (Grandstrand 1986).
The growing secularisation of western society supports this model. We observe a decrease in the use and meaning of religious and public rituals in the practice of death and dying (see e.g. Riper in Booman 1991). Rituals become 'a death language' in which people don't recognise themselves any more, and which are interpreted as constraints on individual and social behaviour. As we will see later, this has considerable side effects, one of which can be interpreted as a loss of opportunity to address the issue of death and dying in a 'collective' context.
While critical of many aspects of the medical model described above, one must not loose sight of the many benefits which have accrued, through science and medicine, during this period. Many successes have been achieved, such as the control of some contagious diseases and some of those diseases which lead to death in the past. The increase in professional care services can be identified as one indicator of the quality of the welfare state. Together, these innovations have increased the competence of doctors and patients in their control of physical life.
During this period, social research focused on a new dimension of death and dying; the meaning of death and dying in everyday life in Western societies. In earlier times death and dying were also topics of research, but with different purposes in mind. For example, Durkheim's study of suicide to explain the 'sickness' of society, or demographic studies with the purpose of describing birth and mortality rates (see e.g. Elias 1984 and Illich 1978). One of the new angles of social research was directed towards the description of people's attitudes toward death and dying based on quantitative methods (See e.g. Feifel 1959). Measuring people's attitudes using scales has often been criticised, and illustrates the constraints of the positivist method of research (Mangen and Peterson 1982).
Without denying the progress of medical science, many researchers from different disciplines and scientific perspectives have focused on the negative side effects of this process of medicalisation. Names such as Aries, Elias, Illich and Kastenbaum are now very familiar to us together with the message they wanted to convey. Western society seems to have neglected many aspects of death and dying which has led to the exclusion, denial, invisibility, and silence of the dying (institutionalisation, professionalisation, and secularisation) (see e.g. Aries 1974). One of the consequences of this is the powerlessness of the dying person and his/her relatives to control what is happening, and a decrease in community and family support (see Aries 1981).
Elizabeth Kubler-Ross, Cecile Saunders, and the Hospice Movement in general are often represented as the 'icons' for what can be called a 'revolution' in the care of the dying, with an impact which goes beyond the boundaries of palliative care (Dubois 1980). They collect and synthesise experiences of dying persons, which were treated, during the first phase, as isolated and individual events. "Desperate diseases may need enlightened remedies instead of desperate ones"! This discourse employs a humanistic psychological language. I have described this approach as the "subjectification" of the dying person. In this process, a new identity for the dying person emerges: the terminal patient. A new 'dying' model is also more manifest. This can be labelled as 'appropriate dying', and is related to a change in the meaning of dying, from an activity without meaning towards an activity for personal growth. The contribution of the actors involved in this discourse has been described in many different ways, but their main points can be summarised as follows (see e.g. ten Kroode 1982);
The question we can ask is this: to what extent are we dealing with a new method for social research, or to what extent are we dealing with an extension of the positivist model based on a re- definition of the characteristics of the object, defined as the research subject? At least the Kubler- Ross model is consistent with the definition of the problematic situation of a dying person, whose starting conditions and desired outcomes need to be determined carefully, together with the operations to be performed for its solution. They must have some invariant observable identity, while also being able to change. Her model is still based on well-defined user roles.
To summarise; while this medical-psychological discourse has extended the death and dying discourse in a positive manner, its limitations are still visible (see Abel 1986). This discourse has the potential to become another model of dominance, in terms of its assumptions (the individual acceptance of death as the best option and a focus on the individual's problem, due to the dying process), and its method (therapeutic talk and its emphasis on a new harmonious world view, which inspired Lofland [1978] to speak of the "Happy Death Movement"). Both the dominant discourses of the first and second phase can be identified as experts 'discourses' (see e.g. Jordan 1992) which are characterised by a medical-scientific, and subsequently, a professional- psychological language. Following Foucault, we can state that the 'experiences' of dying people obtain meanings through their envelopment in a medical and psychological discourse (see Oosterling 1989). The important issue here is that these practices not only discover the needs of dying persons but that they also create aspects of the experience of dying, on an individual and collective level. There lurks a hidden danger in this discourse, and we need to remember that as people live in different ways, so they will die in different ways. There need not be a specific model which is "best".
Although the questions mentioned above cannot be answered in a one-dimensional way, we can state that currently - at least in the Netherlands - we are witnessing an increase in the influence of a discourse which treats the psychological and the social as an additional variable, to be controlled by a special kind of expert (the clergy, social workers, psycho-therapists), as well as a growing resistance to the excesses of this discourse from the 'outside-in'. Resistance to rigid implementation of Kubler-Ross' phase model is part of this. Resistance to those who claim that psychological factors cause death and illness (see e.g. Hay 1988 and Siegel 1987), is also part of the movement which has led to the expression in Dutch: "The Mafia which operates between the ears" (Spaink 1992).
At the same time a new expansive discourse is emerging. The discussions about euthanasia, the arrival of the HIV epidemic, socio-economic factors, (occasionally in opposition such as the aims of decreasing the cost of health care and of increasing the quality in care), and acquaintance with death and dying practices of other cultures, contribute to innovations within the death and dying discourse, including research practices. As a consequence, discussion on death and dying becomes more political and defined as a 'social problem', concerning society as a whole (see e.g. Charmaz 1980).
Under the influence of more openness regarding an 'incurable' diagnosis, the problem definition changes as well. The discourse on death and dying is moving away from a strictly medical or even a socio-psychological framework, to encompass a social dimension as well. Witness the growth in interest about the topic among the general public, and open public discussion, in which dying people themselves become principal actors. Charmaz identifies these new community activities as 'new public dying rituals', and scrutinises them critically from the viewpoint expressed above (11).
These changes have precipitated a transformation in the organisation of health care, with concepts such as self care, home care, buddy support, spiritual care, and quality of life, very much in evidence. We also witness a growing interest in the social aspects of dying and bereavement. This has become clear, for example, in the growing interest in spirituality and local rituals for death and dying, partly in cooperation with the main churches in the Netherlands (Protestant and Roman Catholic). One specific characteristic of such "ritual development" is that the process is determined from the bottom up, rather than the top down. Lukken (1984) describes this as a process of 'inductive' ritual development. There is a growing insight that activities which aim to support more 'humane' ways of dying, should be initiated at different levels of individual and social action.
It is perhaps the first time in history that dying persons, their relatives, and the community, all cooperate with each other in developing collective strategies for surviving and dying. Within my research project a variety of collective strategies has been studied and supported, such as HIVNET, an interactive computer-based information network on HIV and AIDS, and the activities of the Moses and Aaron Church in Amsterdam on community support for those dealing with HIV and AIDS, the design and implementation of the DI-A-LOGUE, a simulation-game which is focused on improving communication between doctors and patients, the philosophy of the first hospice in the Netherlands ("Almost Like Home House") and the Dutch Buddy Association.
These strategies have been explored in this project as attempts to de-construct the model of the dying person as nothing but a 'patient'. They highlight a shift from 'care for the dying' to 'care for the living'. While the second phase has focused on the fight against the 'psychological' death of the dying person, the third phase shows an attempt to avoid the 'social' death of the dying person (see e.g. Krouwel 1991). It is argued that they maintain full rights to societal services, not only to those provided by the medical profession, but to the full gamut of what society has to offer. People should remain fully 'qualified' to make use of such facilities, whatever their status in medical terms, although they may choose to limit or extend this use. This development therefore emphasises the dying person as a competent person, a person who is not 'at the mercy' of professionals, but who can choose and organise what happens in his or her environment like any other person (even if the input of the medical services has to rank highly in this). These are the basic assumptions underscoring my methodology and they have specific consequences for the methods used in this research project. The legitimation of the research models used lies in their ability to allow the research subjects to become social and individual actors. In such an interaction, the roles assumed (who is the research actor and who is the actor under study) cannot be discerned. In the terms of De Zeeuw, research is constituted as an interaction between two or more actors, each generating events and linked to the other actors by organising events. The use of the Interaction of Actors theory by Pask (1993) could lend support in determining the concepts that are basic and necessary to develop these effective co-ordinations. These can lead to the creation of support systems that allow people to act as individual and collective actors. Such actors are more variable in that whatever we use to study them, one cannot model them in any classical sense.
We can conclude that in this third phase we see a tendency towards the formation of a discourse where above all the dying persons themselves speak and act, but without the exclusion of the other discourses. This discourse has been labelled as a form of 'participative action'. In the terms of De Zeeuw (see De Zeeuw 1993b and 1992) the dying person becomes an actor within the care model and becomes active in creating the conditions of his or her own death, in conjunction with others close to them (as is not an infrequent occurrence in some communities where AIDS is widespread). Such an approach can lead to the creation of 'spaces' wherein the competence, authority, and power of dying persons can be rephrased in a variety of different languages. The activities of the Dutch Hospice Movement and those of the AIDS practice have functioned as key actors within my research project. These, although very different, are proto-typical for the new developments within the care for the dying. Although they produce, each in its own way, 'local' knowledge, their impact reaches beyond the boundaries of the practices in which they are developed.
It is the hope of the author that this short historical account of changes in the discourse on death and dying may help sensitise people to the multiplicity of discourses which exist, often indeed co- exist for periods, within particular settings. There is still a need to understand and support more fully the emerging new research practices that belong to the third phase, outlined above. Different issues should be addressed, which vary from philosophical questions about the meaning of death and dying to questions about the organisation of professional, community, and researcher activities which can lead to an increase in the quality of our interaction with death and dying. Leave of absence (like maternity leave) to care for people at home, and the role of gender ('women as prisoners of love') are just two of them. It is to these very issues that the author's current work is addressed.
(Note 2) It took place at the University of Amsterdam, within the research program Support, Survival and Culture, which is part of the Centre for Innovation and Cooperative Technology. [Back]
(Note 3) See for example Wouters 1990. Wouters based his analysis on the work of Norbet Elias and Abraham de Swaan. His main concepts include the processes of democratisation and informalisation in the discourses of living and dying. [Back]
(Note 4) The bulk of this work has been done in the Netherlands and space does not permit this work to be described here. More recently the author has begun a research project on palliative care in the Mid-West Region of Ireland, supported by Milford Hospice, the Mid-Western Health Board, and the University of Limerick. For further information please contact the author at the University of Limerick. [Back]
(Note 5) See e.g. Sawicki's interpretation of medicalisation as the negative phenomenon of the reduction of political and individual problems to medical problems. Medical experts are subsequently responsible for the solution of these problems within the constraints of the medical model (Sawicki 1991). [Back]
(Note 6) See e.g. Prior 1989. In this book Prior argues very clearly that instead of speaking about the discovery of death and dying by social research practices we should speak about a shift of interest with an emphasis on the social meaning of death and dying in Western society. [Back]
(Note 7) Saunders (1976) describes the hospice model as 'hard medicine with a human face' and 'low technology, high quality'. [Back]
(Note 8) As a consequence of the Second Vatican Council the Sacrament of the Dying had become the sacrament of Illness. [Back]
(Note 9) For a more detailed account of this discussion see Riper 1994. [Back]
(Note 10) See e.g., the remarks of Foucault on the assumption and consequences of the sexual revolution and the homosexual identity in Foucault 1985. [Back]
(Note 11) Charmaz asks if public rituals function as a catalyst for the current public fascination with death and dying without actually changing the care practices involved (1980: 322). [Back]