Download Narrative flexibility in cancer – conventional and alternative treatment

Narrative flexibility in cancer – conventional and alternative treatment
English résumé
Taking anthropological theory and method as my starting point, I have investigated the experiences
that cancer patients have had with conventional and alternative treatments. In the dissertation I define ‘alternative treatment’ as therapies that are not offered through the centrally funded health system. By contrast I define ‘conventional treatment’ as treatment that is included under the range of
treatments offered by the centrally funded health system.
Every year almost 33,000 Danes are diagnosed with cancer and there are almost 230,000
Danes currently living with a cancer diagnosis. Studies suggest that about half of all cancer patients
make use of one or more forms of alternative treatment as a supplement to or replacement for their
treatment at hospital.
In 2005 the research network CCESCAM was set up with the aim of researching into the effect of alternative treatment using an interdisciplinary approach and paying particular attention to
cancer. The current project has been carried out under the auspices of CCESCAM and with financial support from Videns- og Forskningscenter for Alternativ Behandling (The Knowledge and Research Centre for Alternative Medicine) (ViFAB), from the University of Southern Denmark and
from the Aase and Ejnar Danielsen Fund. The aim of the project is to examine the relationship between the narratives of illness told by cancer patients and their use of various forms of alternative
treatment and, by extension, the relationship between the narratives of illness told by cancer patients
and more general cultural narratives about cancer and cancer treatment.
The project is based on qualitative methods, interviews, conversations and participant observation. Over a two-year period I have followed a total of 32 cancer patients, family and friends and
alternative practitioners through interviews, telephone conversations, treatments and in focus
groups. The participants share the fact that all have been or continue to be in contact with the established health system, either because they receive or have received conventional treatment or because they go for check-ups. 20 out of the 23 cancer patients participating use or have used alternative treatments alongside their conventional treatment, while three of them use or have used nothing
other than conventional treatment.
In the study the focus is not on particular forms of alternative treatment but on alternative
treatment in a broad sense. In the selection of participants for the study there was an attempt to en-
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sure variation as regards the use of different forms of treatment in four overall groups of treatment:
1) conventional treatment without accompanying use of alternative treatment, 2) advice from alternative practitioners about natural medicine and food supplements, e.g. homeopathy, 3) manual
techniques such as zone therapy or acupuncture and 4) therapy relating to consciousness such as
visualization and spiritual healing. The participants do not make up a representative cross-section of
Danish cancer patients as such, but the study can indicate issues that have been experienced by individual cancer patients and can point up the cultural context of their experience of illness.
In research into alternative treatment the focus is often on the question of whether alternative treatment ‘works’, where alternative treatment is examined in clinical trials as ‘technologies’ on a par
with biomedical forms of treatment. In this study I take as my starting point the patients’ own narratives about their experience with conventional and alternative treatments. As an overall analytic
standpoint, I understand experience as structured in narrative form, in other words organised according to a plot in which definite aims in the future (such as surviving the cancer illness until science has found a curative treatment) make particular treatments and actions in the present meaningful (for example, receiving life-prolonging chemotherapy).
In interviews and conversations I have made use of a narrative approach, in which I have used open
questions to encourage participants to tell me in detail about the experiences they have had with
conventional and alternative treatment that have led them to generate stories of a narrative character. Similarly in the subsequent analysis I have employed a narrative approach, in which I have
partly focused on extracts from the stories that have a narrative character and partly identified three
different narrative types running across the participants’ stories.
In my analysis I derive inspiration from the sociologists Arthur Frank and Douglas Ezzy, who
have used, respectively, published first person accounts of illness and interviews with Australian
HIV/AIDS patients to propose the following narratives: ‘the restitution narrative’, ‘the chaos narrative’ and ‘the quest narrative’ (Frank) and ‘the linear restitution narrative’, ‘the linear chaos narrative’ and ‘the polyphonic narrative’ (Ezzy). In respect of this study’s empirical method and integrating the narratives proposed by Frank and Ezzy, I have adapted and developed further three narrative
types that I identify in the stories of the participants under the headings: restitution, change and acceptance.
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The restitution narrative finds particular expression in the approach to illness and treatment characterised by conventional forms of treatment. The restitution narrative follows the storyline ‘illnesstreatment-restoration’ and is a story about moving through treatment back to life as it was before the
illness. The principal agents in the narrative are the treatment and the health professionals who administer it. Even though the treatment takes centre stage, the narrator of the restitution narrative can
nevertheless write in a significant role for themselves in their story.
In the change narrative the sick person him or herself takes on the role of main character in
stories about taking an active part in the healing process. The change narrative follows the storyline
‘illness-responsibility-change’ and to a greater extent than the restitution narrative places a focus on
the causes of illness. The focus on causes can provide the sick person with the chance to act in relation to their illness, for example by altering diet or creating in their lives new priorities in which
there is an attempt to minimise stress and worry. The focus on causes in the past can give the sick
person the chance to act in the present in relation to creating change in the future and in that way
can contribute to assuaging feelings of helplessness. In stressing the ill person as an agent in their
own healing process, the change narrative finds expression to a greater extent in approaches to healing and treatment characteristic of alternative treatment than is the case with conventional treatment.
In the narrative of acceptance aspects of the experience of illness are integrated that are not
encompassed by the restitution or the change narratives. The acceptance narrative follows the storyline ‘illness-living in the moment-acceptance’ and places a focus on living with the cancer illness.
Acceptance narratives comprise views of the individual as being subject to forces outside the individual themselves, and the future is seen as being not completely controllable. The individual is
seen as an element in a larger context, and in this the illness can be interpreted in relation to religious/spiritual cognitive frameworks. Certain forms of alternative treatment can function not only
as treatments for illness but also as spiritual practice and in that way can articulate spiritual and existential aspects of the cancer disease.
The study shows that different forms of treatment can underpin different aspects of the experience
of illness and can exclude others. Conventional treatment underpins the story of the restitution narrative about treatment being the main agent in a plot about returning to life as it was prior to illness.
Compared to this, alternative treatment can underpin the change narrative’s story about the sick
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person being the main character in the process of treatment and the acceptance narrative’s story
about living in the present with cancer.
In the participants’ stories the restitution narrative is persistent and dominant. This is partly
because the majority of participants use conventional treatment in which the restitution narrative is
the one that is most clearly expressed and partly because restitution narratives are expressed in stories about the use of alternative treatment. Restitution narratives can typically be identified in stories in which change or acceptance narratives are prominent, but the opposite is not always the case.
Furthermore the study shows that there are no unequivocal links between prognosis and the stage of
the illness on the one hand and the narratives that are salient in the participants’ stories on the other.
Even though the restitution narrative appears to be most prominent at the start of the illness and the
acceptance narrative at the end, the narratives can continuously change places in the story, the restitution narrative, for example, coming to the foreground in stories in which the acceptance narrative
has played a prominent part.
Even though no unequivocal connection exists either between the use of different forms of
treatment or the prognosis and stage of illness, nevertheless the study shows that certain forms of
alternative treatment can underpin aspects of the experience of being ill that are not covered by
conventional treatment, and in that way alternative treatment can promote what I refer to in the thesis as ‘narrative flexibility’. Narrative flexibility finds expression in stories in which different approaches to illness, treatment and healing supplement and correct each other in the story and in that
way create a robust interpretative framework for the course of the illness.
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