How does the incurably ill patient in hospital perceive their agency potential to influence their own situation? This article will focus on this issue, incorporating both empirical data as well as biographies written by those incurably ill themselves. The empirical data is analysed from a hermeneutic perspective taking its starting point in the writings of philosopher Hans George Gadamer and sociologist Anthony Giddens.
The analysis provided the following picture:
- One type of patient is compliant. This patient does not expect to have any special agency potential at their disposal and therefore sees the hospital's regime as fixed and unalterable. The patient submits to the regime without raising critical questions, even about things that surprise them or in situations where they feel their boundaries have been overstepped.
- Another type of patient is non-compliant. This patient expects to be involved in the decisions taken and to have their opinion on the illness and treatment listened to. If this fails to happen, a certain transformative capacity is mobilized within the individual enabling them to act in ways that conflict with what the hospital has to offer.
- Finally, there is the semi-compliant patient who accepts the hospital's regime and follows the advice and instructions of the professionals, but who at the same time and without informing the hospital staff acts in accordance with their own perception of the illness and the form treatment should take. The treatment they choose often falls within the domain of alternative medicine.
It can therefore be concluded that the agency potential of the individual patient in hospital is closely linked to their subjectivity, and only to a minor extent influenced by the agency of the professionals.
''I have known many people who have had cancer and have been through a terrible terminal phase. My mother had cancer and developed it at the same age as me. When I was diagnosed as having cancer, I was deeply, deeply shocked and very much afraid. All I could see were pictures of death and sadness. I went out into the street and looked around and said to myself: ''This can't be right. How can things just go on as normal.'' Much of my consciousness was working at two speeds. I mean, one where I in some way or another had to try and find out what had happened and what I should now do. And the other where I told myself I should try and behave completely normally, take the bus home, collect my child, make the food and all those kinds of things. It was all a bit overwhelming.
When I become scared, I have this urge to do something. I mean, I have to get a clear idea of what the situation is! So I asked a lot of questions at the hospital. What now? But they couldn't really tell me much. Then I read an article where a woman wrote about her cancer illness and how she had felt when the doctors said, ''it's not important.'' In some way or another I could identify with her. It was at that moment that I suddenly realised that it was possible for people to have different opinions about whether one could do anything or not.
Later on I joined ''Tidslerne'' (The Thistles: a patient association) with great trepidation at first. But I had to do something myself to try and reduce my fear and anxiety, to get as much information as possible, and to not just say yes to people when I could feel inside that something was wrong.
When I asked to speak to the consultant for the first time, I was met with the response that, ''if you think praying will work, can you not have the breast removed first and then pray afterwards? Reading an article in Alt for Damerne (a woman's magazine) doesn't make you into a doctor.'' I thought these remarks were extremely patronising, so I said, ''No. You might be right, but you don't know me. I have 46 years experience of living with myself.''
Where I really feel that the system and I completely bypassed each other is in particular in relation to the doctors' own fear of death, which I feel has been the major obstacle to any real communication. I feel that a lot of doctors are extremely frightened, of both human contact as well as of illness and death. Nurses
are much better at handling these things than they are. For example, my nurse came over and sat down on the bed and said, ''How do you really feel about this?'' She didn't need to say any more. That was great.
I didn't want to have my breast removed before I could in some way or another feel that I had come to terms with it inside. So I asked if it was possible to delay the operation and was told that I would have to give an answer within three days. So I said, ''I can't make a decision now, but would it not be possible for me to come in for check-ups to see if the cancer is growing quickly?'' I knew perfectly well there was more. But they wouldn't let me. They prioritised resources so that they were used for the benefit of those people who accepted the hospital's recommendations, and for that reason I wasn't allowed to come in for check-ups either. The doctors said I was irresponsible: ''You've got a small child that you have to think about,'' they said.
I didn't want to be a victim. It may be that I would die from cancer but I felt I would just become a victim if I said yes to chemotherapy and radiotherapy. I mean, if I'm going to die early then I have to leave behind my child with a picture of a mother who didn't give up but fought.
So a couple of years went by, and the cancer grew and grew. I was terribly scared and tried to do everything as best I could. I had a thumb-rule that everything I did had to make me feel I was strengthening my immune system. And I discovered that when you invest so much effort, you feel that you're always doing something positive about it. This kept my fear at bay, so it didn't get the upper hand and took over control of my life. Apart from having cancer, and the fact that it was growing, I actually felt great. I was having a wonderful time with my husband, my child and myself; I could run, and I was extremely fit. In many ways, I have never felt better.
It probably sounds very banal to say that I would not have been without cancer. For example, I realised that throughout my adult life since the middle of puberty I had woken up every single morning thinking ''you're so ugly, fat and stupid. It's not surprising no one really cares about you.'' I stopped thinking this way when my back was up against the wall and I could see that I was being ridiculous. I have been afraid of living for so many years. I started my adult life by trying to take my own life on several occasions. I have, of course, thought a lot about death and indeed have often wished I was dead. And when I then became ill, I discovered that it wasn't really because I wanted to die but because I didn't know how to say yes to life. And it was not actually until I got cancer that I was able to learn this.
Marie's story is one of two used in the project, ''How does the incurably ill patient in hospital perceive their agency potential to influence their own situation?''
The primary reason for embarking on the project was a desire to uncover the subjective perspective of the agency potential in the complex structural institution that the hospital constitutes in late-modern Danish society. That patient narratives became an integral part of the project is because it is through them that one is able to come closest to understanding the experiences of subjects living with such a serious illness.
The patient's perspective is often different from the professional perspective, because the individual experiences the illness often as an interconnected series of events inseparable from their life story as a whole (1). Understanding this perspective requires methods that can capture the subjective, the non-measurable, the non-generalisable (2). For this reason the qualitative research interview was chosen as the method through which to gain deeper insight into how certain incurably ill patients perceived their agency potential whilst in hospital. The interviews provided the starting point for the construction of case histories orientated towards answering the research question of the study. Marie and another incurably ill woman were chosen in order to shed light on the patient's perspective in relation to the research question, in the sense that their stories and experiences could contribute knowledge about what can happen when incurably ill people are determined to influence their own situation. A case history is a theoretical organisation of empirical data, a process that begins already in the interview situation and concludes with the analysis. In constructing case histories some data is incorporated, while other data is left out. According to psychologist Jette Fog, this abstraction means that the story conforms to what the interviewee says, but most often only incorporates the statements that contain the essential meaning and subsequently is understood in the light of the overall theoretical and empirical framework (2:184). This means that the case history is not presented in exactly the same form as it was told. In the specific case of Marie's story a form was chosen that adhered as closely as possible to what was told.
In addition to the patient narratives, the project's empirical basis consisted of biographies written by
incurably ill cancer patients, as well as a secondary analysis of three Danish studies (3, 4, 5), all of which in their own unique way contribute to place the research question into perspective. This article only incorporates the analysis of Marie's story in detail. Work related to other empirical data is described in brief.
Theoretical framework of reference
The project reflects a hermeneutic circular process that is not methodological in its approach but which describes an element of the ontological understanding structure, which penetrates all human experience (6).
Understanding is never objective or without assumption, and when one has to endeavour to understand and interpret something that lies close to one's own reality, it is important to be as clear as possible within oneself about one's own standpoint, stresses philosopher Hans Georg Gadamer (6). He differentiates here between foreunderstanding, prejudice and understanding. Understanding can only achieve its full potential if the understanding that precedes it is not arbitrary. Gadamer asks the question of how we can break the spell of foreunderstanding, offering the reply that there can be general expectations of a text that what it says fits in perfectly with one's own opinions and expectations. But that which another person tells me, regardless of whether it occurs during a conversation, in a letter or in a book, is his own opinion and not mine. I must be aware of this without necessarily sharing the same view (6:268).
The greatest prejudice is that we claim to have no prejudices, or to condemn is something which we can refrain from doing. Prejudices express our cultural and historical ballast, which must always be taken into consideration when we are called upon to understand something new. For Gadamer, understanding means first and foremost insight into a perception. To understand is to remain open to the other person or to the text, and in this way understanding becomes an ethical process. Openness, however, will always include our placement of another person's opinion in relation to our own opinion (6:268).
On the importance of key concepts, knowledge sociologist Alfred Schutz writes (7:110) that it is special for these concepts that, as soon as they are introduced into a seemingly interconnected system, they constitute the differentiation between those views which we call levels. The meaning of key concepts is thus not dependent on the level of the current research but on the importance attached to it. In this project, the key concepts applied are afforded the following definitions:
Incurably ill is defined as the cancer patient for whom no treatment is available to cure them.
Subjectivity is defined as the individual's agency and being that is linked to their personality, life story, day-to-day relations and current living situation in a certain society (1:146)
Agency potential is to be understood as the seriously ill person's ability to act and influence their own situation in their encounter with the professionals whilst in hospital, which includes both the individual's subjectivity and their perception of their agency potential.
People act on an individual level, a day-to-day level and a societal level (1), or as philosopher Steen Wackerhausen would say: in micro-, macro- and mega-practice (9). The individual transformative capacity, or agency potential in micro-practice, is characterised by the patient's assessment of their illness and agency potential on the basis of their personality and life story. The cultural transformative capacity, or agency in macro-practice, is linked to day-to-day relations, such as lifestyle, gender, social circumstances, age and ethnic background. Finally, the structural transformative capacity, or agency in mega-practice, is related to the social positions and the maintenance of the existing order (9:14). The three levels of agency are not separated in practice, but interconnected and the others' prerequisites. What binds them together is the individual subjectivity, which therefore is not just the central point for all three levels but also the starting point for change (9). It is necessary to know about all three levels in order to understand which conditions are present in the encounter between the patient and the professionals in micro-practice, because the levels are interwoven with each other.
According to sociologist Anthony Giddens, many actions are unreflected and have unintended consequences, which can result in new non-recognised conditions for agency (10). This can be seen, for example, when the ill person is admitted into hospital. This maintains and reproduces the institution's status as the place where ill people come for treatment and care. But agents also have the ability to articulate why they act as they do. This is what Giddens refers to as the discursive agency level, and it is this level that is
incorporated into the project. As a theoretical source of inspiration for the analysis of narratives, cases and the secondary analyses of the three Danish studies, Giddens' theory of late-modern society was used as an inspiration. His project consists in attempting to go beyond the dualism between agency and structure. This means that it is not just structure that determines the actions of agents, and vice-versa, that it is not just the sum of the agents' actions that constitute structure (11). Giddens applies the term agent to the human subject. The agent is knowledgeable and knowing, who in performing many everyday tasks draws on a ''practical awareness'' constituting a huge store of non-articulated knowledge; a knowledge which enables the agent to act in their everyday life without thinking about how things fit together (10).
In The Consequences of Modernity (12), Giddens describes how modernity is characterised by the enormous speed at which institutions change, by the extent of these changes and by an inner nature in the institutions themselves not previously found in history (12:13). According to Giddens, modernity is characterised by a doubt that has penetrated our daily lives and our philosophical awareness in such a way that doubt has come to constitute a general existential dimension of the modern social order.
In relation to the lay perspective the most important consequence of this is that one must learn to navigate between the paradoxical and conflictual claims of rivalling abstract systems (12:212).
Under such conditions the concepts of trust and risk take on special meaning. Trust is fundamental for the ontological security, understood as ''a sense of the continuity and order of events, including events not immediately found within the sensory environment of the individual'' (10:279). More specifically, trust is afforded great importance in the encounter between the layman and the learned in the abstract systems. This trust is occasionally put to the test in what Giddens describes as the access ports to expert systems. It is here that facework commitments between laymen and representatives of the abstract systems/the experts are created. These are the abstract systems' vulnerable points, because it is possible here to break down or maintain trust (10:79). A person can choose, for example, to step out of a patient-doctor relationship if they have bad experiences at a given access port and if the technical expertise required is relatively low (10:81). Even though there are exceptions, Giddens asserts that daily life has a tendency to become separated from the original nature and from a series of experiences in relation to existential questions and dilemmas. The term, the isolation of experience, is applied to the concealment processes that separate daily routines from phenomena such as illness and death (10:184).
The seriously ill and dying person is isolated physically from the rest of the population as a result of institutional suppression at the structural level. This means that for many people direct contact with events and situations connecting their individual life with questions about morality and finality is rare and fleeting (10:18). Death, according to Giddens, is the zero point where ''human control over human existence reaches an outer limit'' (10:190).
The isolated experience with reality's illness and death often means that when the individual stands face to face with existential demands, they will in all probability experience shock and powerlessness. Giddens refers to these situations as fateful moments. It is in these situations that demands are placed on the individual to take decisions which have a profound effect on their life in the future and on their self-identity. It is often during these moments that the experts enter the scene because expertise is often associated with a fateful situation, for example, in connection with a medical diagnosis (10:137). As these fateful moments are highly significant the individual will often feel as if they are standing at a crossroads, and in this situation many choose to take the road advocated by the traditional authorities, in the sense they seek refuge in established beliefs and activities. However, these fateful moments also represent a potential for requalification and empowerment (10:169).
Requalification, empowerment, and reacquisition of knowledge and skills are a consistent feature in both personal life and broader social settings as a countermove to the expropriating effects of the abstract systems. This reacquisition incorporates some fundamental opportunities not previously seen in history and if sufficient time and other prerequisites are present, ''the individual has at any given point the opportunity for partial or complete requalification prior to specific decisions'' (10:165).
The secondary analysis of the three studies shows that there are many different ways for a patient to act. Nevertheless, there are central common features which are important to highlight:
It would appear that the patient's discursive agency is to a much greater degree linked together with their individual subjectivity than, for example, with the
information, support or resistance given by the professionals. The following pictures emerge for how a patient experiences their encounter with the professionals in hospital:
- The patient can behave towards the professionals as a compliant patient, that is, someone who accepts the confines for agency which have been insititutionally laid down for the patient's ability to act, even though they also limit and suppress the patient's desires and needs.
- The patient can behave towards the professionals as a non-compliant patient, that is, someone who protests and refuses to accept the institutional confines for agency if this appears to suppress their desire to act, or is in conflict with the patient's own views and opinions about illness and treatment.
- Finally, a picture is built up of some patients who act against or in spite of those conditions put in place to control their desire to influence their own situation in hospital. It was these people who selected what they needed and/or were dependent on in hospital, and then acquired the rest themselves elsewhere. The agency of these patients is described as semi-compliant. As far as the hospital was concerned, the semi-compliant patients appeared to be compliant and as a result presumably received more support and positive treatment than the more rebellious patients.
Analysis of Marie's case
In order to understand Marie's agency potential it was necessary to incorporate her subjectivity: in other words, to examine that part of Marie's agency and being that was linked to her potential to personally influence her own situation as a cancer patient in Denmark.
For analytical reasons the agency was divided into respectively an individual level, an everyday level and a structural level; a division that does not exist in reality, as the boundaries between them are constantly changing. The quotations used are taken from the transcript of the interview with Marie.
The individual level
Marie's choice of agency was characterised by her experience of her mother's illness and death. Marie was aware that (pain control) treatments are better today than when her mother was sick and died, yet it is ''pictures of death and sadness'' that first crossed her mind when she was diagnosed as having cancer. Marie did not wish to end up a victim, which she felt she was being pressed into becoming by being a patient. She desired to show both herself and her child that she was prepared to fight for her life.
The everyday level
Marie made a decision not to let herself receive postoperative treatment for cancer because ''she had not yet come to terms with cancer inside'' and decided therefore to decline the offer of treatment. Nevertheless, she would like to have had check-ups at the hospital ''to see if the cancer is growing quickly.'' Retrospectively, she feels that the hospital could have told her that she could have gone to her own doctor and asked to be referred to a cancer specialist. Marie's experience as an active member of the patient association, 'Tidslerne', also played an important role in how she perceived her agency potential. Through this association she was able to build up a network of people who listened and supported her in her choice of agency; a network which understood her situation and which was thereby able to support her in a completely different way than family or close friends could, because it was made up of people who, in relation to the illness, were in the same situation as Marie. Marie saw her involvement in 'Tidslerne' as contrary to the idea of being a victim, which she felt she would have become had she followed the advice and directions of the hospital establishment. Marie was well-informed and knew that her lifestyle, including her diet, meant something to her well-being and for a while she chose to do things which she felt strengthened her immune system.
The structural level
Marie indicated her sense of powerlessness and deep resentment towards the priority given to resources regarding cancer treatment and research. For example, she did not understand why priority was not given to research that sought to develop a method of treatment that did not significantly diminish people's quality of life. The treatment offered to people with cancer was inhumane in her view. Marie's own explanation for this was that doctors were more concerned with getting their research papers published in the right journals at the right time. Personally, however, she believes that within the not too distant future people will look back in astonishment and disbelief at this time of chemotherapy and radiotherapy.
To summarise, one can say that Marie is a very resourceful woman, who on the basis of her personality, insight, life story, social and educational background, reflexively took a large degree of personal control and
responsibility for her situation as a person with cancer. In relation to how she perceived her agency potential in her encounter with the professionals in hospital one can say that the choice of treatment Marie was offered and not offered meant that she took matters into her own hands and refused further treatment. The consequence of this action was that the system rejected her; a rejection which Marie refused to accept (but which she could do nothing about) as she needed to come for check-ups, even though she could ''sense'' that the treatment was not good for her. She had, on one hand, immense trust in her own feelings and limits, but on the other hand, she still needed the system to keep an eye on her to monitor if the cancer ''is growing quickly.''
Structuration theory's relevance
Giddens claims that no matter how abstract and alien structures (in this case the hospital's) might appear, they only exist as a result of the acting agents. Structure is characterised by the absence of subjects and is therefore not in any fixed form. Instead, it is created constantly by those patients and professionals who draw on these structures when acting (10). The hospital's structure of authority appears as it does partly because many patients afford it importance and choose to follow the actions prescribed. In this way, these patients contribute to reproducing the same structure. The powerlessness that several of the patients in these studies have described is a feeling that is intensified as a result of the authoritative status they themselves afford the hospital. However, Giddens claims, powerlessness can lead to reacquisition/empowerment and the hospital's seemingly impenetrable logic can be pierced if a sufficient number of patients start to question it. Even though one finds oneself in a situation where one is dependent, one will, according to Giddens, always be in possession of certain resources that can influence the agency of those wielding power (10). One consequence of globalisation and the division of time and space in late-modern society will be that the hospital professionals in the very near future will no longer have a monopoly on knowledge about illness and treatment. This may mean that institutions will have to be set up whose structures are built on more complicated foundations than has been the case up until now.
Based on the applied empirical data, it can be seen that certain episodes in the course of an illness are more significant than others. The way one is told about the diagnosis, the treatment, the prognosis and the relapse are all things which remain vivid in the memory of most people. What happens or what does not happen in these meetings at the ''access ports'' will often be crucial for the future course of events. It is here that the trust in the experts is put to the test, and if there is a poor outcome, the seed is sown for distrust and uncertainty.
Several patients tell of their experience of being overwhelmed by the feeling of powerlessness in these fateful moments.
Their readiness to act is paralysed because they lack experience in how to handle the situation and many choose therefore to let the experts take over and formulate the strategy for how things should proceed.
The ill person attempts to control their uncertainty by handing over responsibility for the decisions to the experts, who often have a ready-made plan at hand that radiates control and authority. In this way doubt and uncertainty can for a while be turned towards trust and the ontological security reestablished.
When the incurably ill person in this situation has ''subjected'' themselves to the logic of the experts and follows the accompanying rules, one can easily imagine how the potential for influencing their own situation in this context is reduced to a level which the incurably ill person regards as legitimate.
By far most of our actions are routine and performed without thought, and many incurably ill people will probably only perceive a significant reduction in their agency potential in relation to the illness itself. Nevertheless, those patients referred to above have in one way or another described some restriction in their agency potential, albeit few of them have drawn attention to this or protested. In other words, the fact that patients would appear to accept the imposition of limitations on them in relation to their preferences regarding treatment and influence in their contact with the hospital, is a way of surrendering or submitting to the system: a submission that demonstrates an acknowledgement of the systems' disregard for the agency or limitations that can be maintained outside the system.
In those cases where patients nevertheless have rejected the strategies prescribed by the experts, the patients have met with resistance. To maintain personal decisions and persist with agency that does not clearly fall in line with the experts' strategies, has been a demanding process for some patients. Some mention their fear of receiving poorer treatment, while others
recall being subjected to reprimands or threats of uncontrollable complications of the illness. Some report being ridiculed while others have stated that they were sent away by the hospital after making clear that they did not wish to accept the medical treatment offered. The fact that some patients despite this remained determined to stand by their decisions, has by several been described as an attempt to resist what they saw as people attempting to act as experts on their life. This resistance has for some resulted in a decision being made to take responsibility for their own life and illness.
Where is nursing in all this?
Nurses do not take up much space in the analyses, and when they are mentioned it is often as part of a ''they'' or ''them,'' in the sense of both doctors and nurses, who are understood to be part of a united team. Nursing appears as a positive yet relatively unimportant and uninfluential reference in relation to the agency potential. Several mention nurses in sympathetic and positive terms: nurses are ''nice'' but ''they're always busy'' and ''one doesn't like to disturb them.''
When nurses in their internal communication claim that they discharge a form of total nursing to cancer patients, this means a form of nursing where, according to anthropologist and nurse Helle Ploug Hansen (13) almost anything is possible. However, in the actual encounter between the nurse and the patient the nurse's pattern of behaviour in practice would appear to contradict this ideal (13:109). The desire to provide ideal nursing is only practised in terms of terminology, which is first and foremost rhetoric in character and has little practical value. According to Wackerhausen (14) there is a serious danger of riding on the wave of holism, which is more often than not characterised by empty talk and unchanged practice, albeit expressed in a new way. But, in Wackerhausen's view (14:14-15), new terms and good intentions are rarely enough to alter practice.
In Eriksen's study (5) care is described as a social relation, founded in fellowship and solidarity (5:41). But care, understood in terms of sharing one's worries with another, is badly neglected in the cancer field, even though it is the most important need identified by the 500 patients who took part in Eriksen's study (5:192). Nurses find it difficult to meet patients on their own terms, because they themselves are caught between a treatment-oriented rationality and a care-oriented rationality. Moreover, the field of practice where the nurse and the patient find themselves, is subject to such complex and confusing conflicts of interests and structural conditions that there is not necessarily any direct link between intention and result. The nurse's encounter with the patient in micro-practice is dependent on the subjectivity of the two individuals as well as the nurse's professionalism. However, the meeting is also rooted in macro-practice (the cancer ward/the hospital), whose organisational structure via the nurse pervades the encounter. This macro-practice is in turn rooted in and affected by a mega-practice, which falls into the realm of agency linked to health policy and the national economy (9:16).
The consequence can be that nurses come to suppress the patients' desire to act if these actions are not a logical extension of what is considered acceptable in the ward culture. This is because it is extremely difficult for the nurse not to act as a representative of the system, even though it is perhaps not the intention. Consequently, the nurse's empathy and sensitive communication in practice often serves as a lubricant for the system (14). It must be emphasised that the above describes nurses from a foreunderstood interpretation. The fact that nurses are described as nice and friendly is seen as positive but relatively uninfluential in relation to the patient's agency potential. Perhaps something more lies behind statements such as, ''nurses are a little easier to have a chat with'' (3:43) and ''my nurse sat down on the bed and said: 'how do you really feel about this?' She didn't need to say any more. That was great'' (from Marie's interview). It may be that these encounters with kind and humane nurses who give a little pat on the hand, help give patients hope and trust in their own transformative capacity, but there are no statements that specifically support this hypothesis. On the contrary, there are statements where patients express sympathy and understanding for the nurses' lack of agency potential, something which is most often attributed to being busy. One patient expressed it in the following way: ''Nurses are, of course, nice and willing to help; they're running around'' (3:48). This busy activity would appear to be viewed by patients (and nurses themselves) as a legitimate excuse when they are called on to explain why the nurses did not spend time with them. Helle Ploug-Hansen refers here (13) to Swedish nurses Lützén and Tishelman who, in a study on cancer patients and their perception of care and other issues, found that patients often referred to nurses as people who wished to provide good nursing care, but who were always busy. The patients thought it was a pity for the nurses (13:69). Such a viewpoint is supported by a case history
in my own project, where the person concerned has the following to say about nurses:
''I mean, there is a huge potential resource working on the wards which is rushed off their feet.''
Can we change practice?
If we seriously want to change practice so that the patients' potential to influence their own situation is increased, work will need to be done at the micro-, macro- and mega-practice level. Regardless of whether one regards the term policy in a broad sense (understood as every decision-making process that involves solving problems where conflictual interests and values collide) or in a narrow sense (in terms of administrative and educational political decision-making processes) the question of increasing the patient's influence on their own situation will be political.
However, it is by no means easy to influence the health service. Simply developing a clear understanding of its tasks, structure and function is difficult enough, partly because the health service to a great extent is characterised by specialisation within the different professions, including the medical and nursing fields (15:232). The trend towards specialisation has partly resulted in the creation of a great divide between laymen and learned, because society has enormous difficulty monitoring and gaining insight into the work of professionals (15:233). If there are to be changes, the monopoly of the professions on content and knowledge must be broken. If we are to offer a service that meets the needs of the individual, it is necessary to broaden our understanding of health and illness, which lies at the root of much of the care and treatment patients are offered within the health sector today. Wackerhausen is a strong proponent of the adoption of an open health concept that is closely linked to autonomy, respect for the individual's values and principles for how to live their life. The concept is described as open because the specific content will vary according to the individual, the culture and the historical circumstances. According to Wackerhausen:
''To monopolise certain goals, principles for living and subject-bound function levels is in this perspective to monopolise a certain substantial health concept'' (16:52).
But if the work towards this must be more than just rhetoric, it must also be reflected in the hospital's structure and framework, which today is only built up around the principles of treatment and which is dominated by a highly regulated and formalised regime (9). An important prerequisite for any significant changes in the encounter between the individual patient and the treatment provider at micro-level is that the changes described at the other levels have been carried out or are in the process of being carried out. This is important because the practice of these fundamental levels will be rooted in and strongly influenced by the micro-practice level. This does not mean that supportive and caring relations can never be established without prior or simultaneous changes at the other levels. However, it is much more difficult to carry out and prioritise care and treatment based on an open health concept if the institutional attitude is built on a fundamentalist health and illness concept: a concept that rests on the assumption that a state of illness can be described and defined objectively and free of value on a scientific basis, regardless of the person concerned and their social and cultural circumstances (9:17).
The circle is complete
To return to the research study's starting point, the question is repeated: How does the incurably ill cancer patient perceive their agency potential in their encounter with the professionals in the hospital? On the basis of the empirical data the answer must not surprisingly be: in as many different forms as there are incurably ill cancer patients.
However, in addition, the consequence must also be that what is decisive for how much the transformative capacity of the individual is able to mobilise agency is the individual's subjectivity. The encounter between the professional and the patient is subject to such complex conditions and interests at the individual level, the hospital level and the political/economic level that if this encounter is to have a more successful outcome whereby the patient is afforded greater agency potential, action must be taken at all three levels. Moreover, this problem cannot simply be ignored, as many patients in the future will refuse to accept the kind of treatment that some of the people interviewed for this project have reported.
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Bibi Hølge-Hazelton. Graduate School of Lifelong Learning. Department of Education, Roskilde University P.O Box 260, DK-4000 Roskilde, Denmark.