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Keywords:

  • cancer;
  • complementary medicine;
  • evidence-based medicine;
  • integrative care

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

The integration of complementary and alternative medicine (CAM) into cancer services is increasingly discussed as a potential part of UK health policy but as yet there has been little sociological research examining this process. This paper examines the results of a study on the provision of CAM to cancer patients in two distinct organisational contexts: the hospice and the hospital. It is based on interviews with medical specialists, nursing staff and CAM therapists. This paper focuses on how integration is managed in each organisation, examining professional boundary disputes and inter-professional dynamics. Discussion focuses on the rhetorical and practical strategies that are employed by a variety of differently positioned interviewees to negotiate the complexities of the interface of CAM and biomedicine. The results show significant differentiation in how differently positioned cancer clinicians view and utilise the biomedical hierarchy of evidence. We argue that the integration of CAM should not be conceptualised as a mere challenge to biomedicine, or, as resulting in a linear process of deprofessionalisation. Rather, it should be seen as producing a complex array of processes, including strategic adaptation on the part of medical specialists and NHS organisations.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

Cancer patients have traditionally been the most prolific users of complementary and alternative medicine (CAM) (Bernstein and Grasso 2001, Ernst and Cassileth 1998). Particularly for patients with advanced disease, CAM therapies can play a central role in their cancer care (Jordan and Delunas 2001). Although still sporadic, CAM services are now being provided for cancer patients within some National Health Service (NHS) hospitals and NHS-affiliated hospices in the UK. These organisations are offering selected CAM therapies including (but not limited to) reiki, reflexology, aromatherapy, therapeutic massage, spiritual healing, acupuncture and hypnotherapy. The delivery of CAM (albeit limited) to cancer patients represents a significant shift, particularly for NHS hospitals, in terms of allowing CAM therapists to operate within their premises.

Despite some degree of integration and the huge popularity of CAM with cancer patients, the presence of CAM modalities is posing considerable challenges to the organisational cultures of, and professional dynamics within, NHS cancer facilities. The integration of CAM raises considerable dilemmas regarding effectiveness within a medico-culture espousing evidenced-based medicine (EBM) (Coulter 2004); a professional body, which views much of the evidence available to back up CAM modalities as fundamentally flawed. However, the push for a more integrative form of cancer care in the UK, at least at the policy and public advocacy levels, continues regardless of such concerns, primarily because of significant public support (Luff and Thomas 2000) and recent political pressure (House of Lords 2000). As a result, individual organisations are facing a plenitude of dilemmas including the reassessment of traditional notions of evidence and effectiveness.

Recognition of the need to engage with the complexities of the integration of CAM into cancer care is currently generating major research initiatives in the UK. The National Cancer Research Institute has established a complementary therapies clinical studies development group, and the Department of Health (DoH) has funded a small research programme in the area. This paper draws on the results of the largest study from the DoH-funded programme, involving in-depth interviews with 80 cancer patients and 31 cancer clinicians. Drawing specifically on the accounts of cancer clinicians, this paper begins to shed light on the complex processes involved in the integration of CAM in cancer care and the resulting dynamics between CAM therapists and medical staff in two distinct organisational contexts. The study is grounded in a distanced approach to the sociology of CAM. The trend to integration is neither seen as a prima facie good or as something to be fundamentally opposed.

Background

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

EBM and the evidence hierarchy

The evidence-based medicine (EBM) movement began to develop in the 1970s, and solidified as a key concept in health policy in the 1990s (Timmermans and Kolkerm 2004). The EBM movement has resulted in other policy trajectories including the development of evidence-based practice (EBP) (Banning 2005) and there have also been attempts in the US to establish EBCAM (evidence-based CAM) centres and research groups (e.g. Hardy et al. 2001, Wilson and Mills 2002). This process of applying the principles of EBM to CAM has been limited in success due to: the lack of existing RCT-based studies of CAMs; lack of money and expertise to do such studies; and a continuing belief within the CAM community that paradigmatic issues fuel opposition to their practices, not the evidence-base available.

Social scientists have regularly criticised EBM as, among other things, a threat to doctor/patient communication and the value and integrity of individual clinical judgment (Goldenberg 2006, Mykhalovskiy 2003, Pope 2003). Moreover, EBM has been criticised for a failure to address grassroots processes within complex healthcare environments (Mendelson and Carino 2005). Social theorists have also pointed out the naivety of positivist empiricism, particularly in terms of the lack of acknowledgement of the influence of values on knowledge and fact production (e.g. Goldenberg 2006). Further weight is added to such arguments, given the fact that there is no evidence that EBM actually improves outcomes for patients, and furthermore, there is considerable doubt that teaching clinicians the principles of EBM, in its current form, actually benefits patients (Dobbie et al. 2000, Morrison et al. 1999).

Regardless of arguments concerning success or failure, the notion of EBM is omnipresent in UK healthcare policy, and indeed, in the accounts of the clinicians’ interviewed here. A central tenet of EBM is the biomedical hierarchy of evidence, which is broadly as follows: 1) systematic reviews with meta-analysis; 2) experimental studies (e.g. randomised controlled trials); 3) quasi-experimental studies (e.g. before-and-after studies); 4) observational studies (e.g. cohort studies); 5) descriptive studies (e.g. case series), and 6) interpretivist studies (e.g. qualitative interview studies) (see Broom, Barnes and Tovey 2004). Moreover, certain study designs are considered, by clinical epidemiologists, only to be able to measure accurately certain facets of healthcare. An RCT is viewed as able to measure the effectiveness of an intervention; a case control/cohort measures harm; a cross sectional study measures cause (aetiology) and prevalence; a cohort study measures prognosis; and, a qualitative study, meaning.

This hierarchy of evidence has been employed rigorously by organisations like the Cochrane Collaboration and is viewed by the majority of the biomedical community as crucial for rating the quality of clinical evidence. It is, if you like, the epistemological schema which defines what constitutes good knowledge and effectiveness; a schema that is employed both rhetorically and practically at a grassroots level by many biomedical clinicians.

In practice, as illustrated by the current study, treatment and funding decisions do not necessarily follow the ideals espoused by the biomedical community. At a grassroots level, decision-making is often more complicated and subjective, study designs often do not reach the gold standard, and informal systems operate in NHS Trusts that influence the treatment choices made available to patients.

Evidence-based medicine: research in the oncology setting

There is little research examining the degree to which oncology treatments are evidence based. The exception is a study by Foy and colleagues (1999) which examined the evidence threshold for oncology treatments provided by an NHS Trust in Manchester. This study found that treatment funding was not just influenced by the level of evidence available, but also, the value placed on certain clinical outcomes by particular individual consultants, political pressures, and financial pressure. Moreover, Foy et al. (1999) discovered that the level of evidence was often below the biomedical gold standard (i.e. meta-analysis of multiple randomised-controlled trials). This is not particularly surprising in itself, but what was interesting, was that a significant proportion of treatments was not backed up by randomised controlled trials at all.

The implication of this potential variability or evidence gap is significant, both in terms of the quality of biomedical cancer care, and the potential integration of CAM into UK cancer services. If indeed the evidence hierarchy does not match grassroots processes, and informal systems operate within individual Trusts, awareness is needed of how these systems will affect attempts to get funding for CAM therapies.

Evidence and CAM

The sidelining of CAM in cancer care has often been justified according to the paucity of high level evidence available. But what is the actual evidence base for CAM, if any? A review of the literature illustrates considerable differentiation in the evidence base available for particular CAMs (Ernst 2001). RCTs have shown that acupuncture and acupressure are practical, safe, and inexpensive ways of reducing nausea and vomiting after cancer treatment (e.g. Ernst 2001, Filshie 1990). Forms of spiritual healing (e.g. reiki and therapeutic touch) and mindfulness-based stress reduction have also been shown in clinical trials to lower anxiety, enhance quality of life, and improve overall wellbeing in cancer patients (see Ernst 2001, Taveres 2003, Carlson et al. 2004). However, other CAM therapies provided in the institutions examined in this study, such as aromatherapy, massage and reflexology, have little high level biomedical evidence to back up their efficacy in cancer care (Corner et al. 1995, Ross et al. 2002, Soden et al. 2004, Stephenson et al. 2000).

Advocates argue that many CAMs involve highly complex interventions that rely heavily on psychosocial outcomes that cannot easily be assessed in a controlled trial. It has also been argued that outcomes are highly subjective and cannot easily be measured in biomedical study designs. Even the strongest proponents of applying the evidence hierarchy to CAM acknowledge that a double-blind design to compare, for example, aromatherapy treatments is probably impossible to achieve (e.g. Cooke and Ernst 2000). However, they also argue that the CAM community needs to do much more in terms of producing high-quality evidence in order to play a more central role in the UK cancer services.

Evidence and organisational setting: the hospice and the hospital

As evidenced in the results of the current study shown below, processes of integration (or barriers limiting it) are not linear, and internal procedures vary depending on the organisational context. Hospices in the UK have been at the forefront of offering holistic care to cancer patients (see Tavares 2003). Research has indicated that within the hospice setting, doctors tend to focus more on treatment of the whole person (i.e. subjective spiritual and emotional needs), rather than the disease focus evident in hospital oncology settings (Addington-Hall and Karlsen 2005). Studies of nurses working in hospice settings also illustrate a focus on overall patient wellbeing and pursuing a holistic approach to palliation (e.g. Chiu and Mok 2004). Given this specific context, it seems possible that, biomedical constructions of evidence may play less of a role within the hospice than meeting patients’ subjective needs at end-of-life, particularly given the fact that, evidence for palliative care interventions has historically been poor because of difficulties in researching terminally ill patients (Bain et al. 2003). Therapeutic modalities, traditionally marginalised in biomedical cancer care (e.g. reiki, reflexology and spiritual healing), may be assessed less in terms of physiological, observable effect, and more according to subjective measures related to patient satisfaction with care and overall wellbeing.

As illustrated by the results of the current study, however, it is not simply a matter of hospices and palliative care clinicians being more open to CAM and integrative medicine. Despite taking a very different approach from that of the hospital staff in terms of how they perceive the role of CAM, the hospice staff also have to negotiate a complex array of pressures when attempting to provide quality care to cancer patients, and indeed, are also subject to biomedical parameters espousing evidence-based medicine.

As distinct from the hospice setting, hospital-based oncology services have traditionally focused on cure rates and disease reduction, in part, due to the terminal nature of many cancers and to societal demand for curative treatments. Although oncology as a medical specialty has extended beyond a purely disease-centred approach to care seen in the mid-20th Century (Turner et al. 2005), there is still little direct integration of CAM with oncology services in the UK, and significantly, neither general medical nor oncology specialist training involve significant education on CAM treatments (Murdoch-Eaton and Crombie 2002). At present, there is very little direct NHS funding for CAM therapies for cancer patients. Currently, funding comes almost exclusively from the volunteer sector or services are offered free of charge by individual CAM therapists.

In terms of integrating CAMs, the hospital setting is very different from that of the hospice, with a history of evidence and disease reduction as central to funding decision-making. Given the rhetoric of, and attempts at implementing, EBM and arguments regarding the lack of evidence to back up many CAMs (House of Lords 2000), there exists considerable potential for conflict regarding integration within the hospital context (Coulter 2004).

A key focus of this study was on how these two very different healthcare environments outlined above (and the clinicians working within them) were approaching the increased presence of, and demand for, CAM by cancer patients.

Theorising CAM in the context of cancer care

For sociologists, the integration of CAM in cancer care (or lack thereof) raises considerable theoretical concerns. On the one hand, the increased presence of CAM presents a potential challenge to, and threatens reconfiguration of, established biomedical organisational culture. As integration becomes increasingly common, paradigmatically distinct practices will increasingly interact together, and effectively, compete for resources. Moreover, in the current context, in which biomedical cancer treatments still maintain a virtual monopoly, the integration of CAM potentially challenges (but is not necessarily changing) the biomedical culture of NHS cancer facilities, potentially contesting the philosophical ideals and assumptive base of biomedicine.

It could be argued that the introduction of CAMs for cancer patients offers a challenge to the symbolic power of the medical profession (Boon et al. 2004), potentially reconstructing them as one of a number of cancer clinicians, and furthermore, potentially questioning the central tenets of their epistemological/ideological position. Moreover, the increased integration of CAM within the NHS could be seen as contributing, among other factors, to the deprofessionalisation of biomedicine (Haug 1973, 1988). In this context, the process of deprofessionalisation denotes a demystification of medical expertise and increasing lay scepticism about biomedical health professionals. This process of deprofessionalisation is seen to result from reductions in: monopolisation of esoteric knowledge, autonomy in work performance, and authority over clients (Haug 1973, 1988). But are such arguments relevant to what is happening at the point of delivery in cancer services?

The proliferation of CAM has to a certain degree catalysed a movement towards a market or consumerist model of healthcare, increasing the range of options available to consumers, encouraging patients to question biomedical advice, and potentially challenging the monopoly of biomedicine in healthcare delivery (Bombardieri and Easthope 2000). Furthermore, the increased consumption of CAM by patients has been seen as part of a broader movement towards a questioning of the benefits of the primacy of biomedicine in health provision and as a challenge to doctors’ clinical authority (e.g. Lupton 1997).

Such a binary analysis, however, is increasingly criticised by sociologists who recognise the complexity of grassroots organisational processes and the importance of intra-professional differentiation (e.g. Timmermans and Kolker 2004). They warn against constructing an oversimplified view of the waxing or waning of the biomedical profession (e.g. Broom 2005, Germov 1995, Timmermans and Kolker 2004). For example, Lewis et al. (2003) argue that the so-called loss of professional autonomy in medicine may be viewed more as an adjustment to the current social context rather than a breakdown in professional control. Similarly, as evidenced in the results presented below, the notion of CAM as a challenge to biomedicine is inadequate for capturing the complex strategies being used by both medics and CAM therapists to construct (and maintain) their own validity in particular organisational settings.

A more nuanced approach is needed to examine how the integration of CAM is managed by different actors, what position CAMs are allowed to occupy within particular organisational settings, and the mechanics of how such roles are negotiated, or indeed, enforced. In particular, insight is needed into clinicians’ relationships with, and responses to, potential CAM integration to actually discover what is occurring at the point of service delivery. We know little about whether (and in what ways) CAMs and biomedicine are being shaped by processes of integration, and the implications for professional identities and therapeutic processes. In order to engage with such issues, in this paper we move past oversimplified binary constructions of the relationship between CAM and biomedicine to examine the mechanisms through which integration is managed, reflecting on the implications for CAM in cancer care, within and between different organisational contexts.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

We selected two organisations that would provide us with interesting cases of CAM integration in the UK. These organisations were selected because both have innovative characteristics such as: staff involved in high profile roles in establishing national CAM guidelines, and secondly, in the case of the hospital, a large support centre located within the hospital providing CAM treatments to cancer patients.

Description of recruitment sites

Hospital:

The NHS teaching hospital that we examined has one of the largest cancer treatment facilities in the north of England. It has facilities for providing support and CAM services to cancer patients, through a centre set up and funded by the volunteer sector, and located in the centre of the hospital site. At the time of recruitment, this centre offered patients: spiritual healing, reflexology, art therapy, reiki, aromatherapy massage, body massage, indian head massage, yoga and hypnotherapy. The CAM therapists were volunteers, offering, generally, one day a week of their time to provide their therapy free to cancer patients.

Hospice:

The hospice we selected provides patients with an array of CAM therapies, including acupuncture, reiki, massage, hypnotherapy, reflexology and aromatherapy. The majority of the patients at the hospice are cancer patients. Two palliative care consultants supervise all treatments offered in the hospice. Although the hospice receives some NHS funding, almost half its funding comes from public donations. Thus, there is a degree of autonomy (at least from the Primary Care Trust) in the hospice movement, resulting, as we see below, in quite different strategies to integrate CAM.

Interviews

Within these organisations we interviewed 31 key individuals including: 12 medical specialists (medical oncologists, radiation oncologists, palliative care specialists); six specialist cancer and palliative care nurses; six CAM therapists (including two co-ordinators); two radiologists; four specialist cancer and palliative care pharmacists; and one specialist palliative care occupational therapist. At the time of the interviews the two radiologists were employed by another hospital in Yorkshire. Ethics approval was secured before recruitment began.

The interviews were generally between one and two hours long and were recorded and transcribed. The interviews explored: how differently positioned cancer clinicians were reacting to, and adapting to, the increasing presence of CAM in NHS cancer services; the role of CAM in cancer care in their specific organisation context; views about the role of evidence; and, beliefs about therapeutic processes in biomedical care and CAM. Examples of the questions asked include: What constitutes evidence in your perspective? How do you personally judge the effectiveness of a treatment? How do you view CAM therapies in relation to evidence? Within your organisation, how is funding secured for CAM or biomedical treatments and what is the role of evidence within this process?

Analysis

The methodology for this project draws on the interpretive traditions within qualitative research, focusing on establishing an in-depth understanding of the experiences of the respondents, and in particular, notions of effectiveness and their views on the role (or potential role) of CAM within their professional life and organisational context. Data analysis was based on four questions adapted from Charmaz's approach to social analysis (1990: 1168): What is the basis of a particular experience, action, belief, relationship or structure? What do these assume implicitly or explicitly about particular subjects and relationships? Of what larger process is this action/belief etc. a part? What are the implications of such actions/beliefs for particular actors/institutional forms? One of the authors undertook primary analysis; interpretations produced were challenged and tested by the other author; initial interpretations were re-tested against the data and the final understanding of the data, presented here, generated.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

The hospital context: evidence, effectiveness and the biomedical gold standard

Questions about what constitutes evidence and clinical effectiveness have been at the core of debates about CAM and biomedicine. In particular, debate has centred on several key issues such as: how effectiveness should (or can) be measured; the degree to which biomedicine actually practices EBM; and, the reasons why a biomedical-type evidence base does not exist to back up many CAM practices. Within this study we were interested in exploring: who determines what constitutes good evidence at a grassroots level; how far up the evidence hierarchy evidence has to be in oncology before a treatment is actually funded; and, whether informal systems exist that shape decision-making.

In order to explore such issues, the clinicians were asked to talk about what they viewed as constituting validity and effectiveness, in their words, and in their specific organisational context. As seen in the excerpts presented below, the process of a treatment being considered by the management, getting funded and being viewed as effective in an NHS Trust, is a much more subjective and complex process than an intervention merely being evidence-based:

Interviewer: How do you personally assess the validity of a treatment?

Medical Oncologist: We have this sort of grading system for our evidence base which you are probably aware of, and we use this more and more now, where the best evidence is the meta analysis or . . . systematic review and meta analysis where available, randomised control trials and so on . . . That's the sort of relationship of trust within the Trust, that, we won't use unproven therapies.

Interviewer: What does unproven mean? Have all your treatments had Phase 3 clinical trials, or even randomised controlled trials?

Medical Oncologist: Absolutely not and that's a good point. A lot of things that we do are not supported by the highest grade of evidence and that may be because we have been unable to gather that evidence. It may be because they are very rare conditions in which case you use the next best . . . 

Interviewer: So ultimately, would hospital policy exclude all complementary therapies . . . because there is no evidence?

Medical Oncologist: You do not have to have a meta analysis or even a randomised controlled trial, but, you would have to present available evidence and convince the hospital management . . . It would depend on why the evidence is not there; how likely is this treatment to be toxic; how expensive it is likely to be . . . even who [which specialist] is asking for the treatment to be funded and their reputation (Research and Clinical, Male, 43 years).

The above excerpt illustrates the highly complex and subjective process of achieving funding and legitimacy within an NHS cancer facility. Like the majority of the other specialists interviewed, the specialist shown above begins with an ideal; an ideal that diminishes in relevance in practice. Getting funded, as he acknowledges, is influenced by professional status, the availability of funds, and how convincing an individual specialist is; not merely the level of evidence presented to the Trust. What emerged from the specialists’ accounts was considerable disparity between the ideal of evidence-based medicine and actual organisational practices. Regardless of this discrepancy between policy and practice, idealised notions of the biomedical evidence-base were still central to the delineation of CAM and biomedicine. As seen later in this discussion, such idealised constructions of biomedicine also provide a discursive basis for justifying organisational processes delimiting the provision (or delivery) of CAM.

The biomedical hierarchy of evidence exists to ensure that a high standard is met if possible, and clearly, some flexibility must exist to ensure patient care is not compromised, particularly in cases of rare conditions where experimental studies are impossible (let alone RCTs). However, this ideal is not applied across the board, but rather, in some cases, it is used to deny treatments funding and legitimacy in cases where clinicians are not well placed to negotiate this rather subjective and political process (i.e. CAM therapists).

The system, as outlined by a number of the specialists interviewed here, can be flexible if the desire to be flexible exists, but there exists a default position if management do not view treatments as appropriate. This position is that, in cases where any doubt exists regarding the logic behind the treatment (i.e. its paradigmatic base), it must reach the so-called gold standard. This may pose significant difficulties when treatments are perceived to be paradigmatically incommensurable with the biomedical model; a model which clearly underpins the informal system outlined above.

This ‘black box’ of funding decision-making has considerable implications for the integration of CAM into NHS hospitals. Hitherto, the biomedical community have maintained that CAM cannot be integrated unless a high level of evidence is presented to back them up (e.g. Ernst 2000). However, the subjective process of decision-making regarding many biomedical cancer treatments, suggests that CAM therapies may also have to achieve more than a high level of scientific evidence to successfully receive funding and clinical legitimacy. Questions like: is the clinician a scientist; does she/he have a scientific mind; and, is there biomedically-justifiable logic behind the treatment, may be just as important as clinical evidence.

The importance of the scientific mind

Despite the biomedical ideal of evidence-based medicine, and the tendency of these specialists to utilise this rhetorically in their accounts of CAM, there was also an acknowledgement that a large proportion of biomedical cancer treatments that get funded do not actually meet their organisation's own criteria for establishing effectiveness. Effectiveness, according to these specialists, would often be established retrospectively. For example, the trial would begin after the intervention was funded by the Trust and the intervention would be dropped or use would continue depending on the outcome of the study. What was particularly interesting was the way in which ‘a scientific mind’ was viewed by all the hospital-based medical specialists as a reasonable substitute for a lack of high-grade evidence. As suggested above, such factors are pragmatic in the sense that they are focused on allowing biomedical treatments (with limited evidence available) into the system, rather than slippage across the board (i.e. allowing all therapies through including CAMs):

Medical Oncologist: I wouldn't support the use of public money to use therapies that are not evidence-based. Not being, you know, any attempt at really providing an evidence base and some of the stuff that we do here hasn't got a very good evidence base, but it's at least within an environment which is sceptical of its own treatments, and, you know, looking to make an evidence base if it can and quite happy to disregard treatments that are of no benefit. That kind of scepticism is maybe the important aspect of modern medicine which is perhaps not an aspect of complementary medicine. I think it would be difficult to argue for the use of public money for complementary medicines personally (Research and Clinical, Male, 43 years).

As seen in the above excerpt, the scientific mind and scepticism are used rhetorically to delineate between CAM therapists and doctors, and to justify treatment decision-making. Again, there is an acknowledgement of a lack of evidence for many biomedical cancer treatments. However, the potential blurring of boundaries as a result of the realisation that biomedicine is not as evidenced-based as it claims to be, is countered through a delineation of CAM and biomedical clinicians through constructions of what constitutes a rational, scientific mind.

We were also interested in the biomedical clinicians’ views on how they would react if scientific evidence was available for complementary therapies. It emerged that, although they claimed they would accept this knowledge if scientifically legitimate (i.e. published in the right journals, with an appropriate methodological design, vetted by the right people and so on . . . ), they viewed this as an implausible scenario:

Interviewer:  What if we could show you good evidence on the effectiveness of a complementary therapy?

Medical Oncologist: Well, I suppose we'd use it, but . . . for most complementary things there is never going to be the evidence. If they actually worked, I think we would probably already know about it . . . occasionally things slip through like acupuncture but this is an exception. (Female, Research and Clinical, 43 years)

Medical Oncologist: [Complementary therapies] are inspirational therapies, you know, somebody has an idea about something that would work and it hasn't been through a process of scientific validation . . . they [aren't] therapeutic, like more supportive. They certainly aren't coming from the deep world view that we have developed through scientific experimentation . . . and realistically there's unlikely to be any evidence produced for it either (Medical Oncologist, Male, 43 years).

Although there was acknowledgement that treatments would have to be considered if evidence were available (and that some CAM treatments like acupuncture had actually been scientifically proven), there was considerable scepticism in terms of whether there would ever be enough evidence for most modalities even to warrant serious consideration.

In part, this may be linked to the views of many CAM therapists in terms of what evidence is actually necessary to achieve validity. In this study the CAM therapists largely rejected the necessity of high-level evidence, prioritising intuition and anecdote:

Interviewer:  How do you assess whether a treatment or a therapy is effective? How important is scientific evidence?

CAM therapist: Not very. I assess effectiveness by the physical responses of the clients and also the sort of feedback that they will give you at the end of the sessions and the fact that they want to come back for more (Aromatherapy/massage, Female, 58 years).

Interviewer:  For you, what do you feel is evidence?

CAM therapist: Patient comfort, I think, and wellbeing. It's very difficult to put your finger on . . . Well, we've got written evidence because we keep records and there's the patients or clients that you see. That's visible . . . that's evidence to me (Aromatherapy/massage, Female, Age not stated).

Thus we see quite different views of what constitutes evidence of evidence from the perspective of the CAM therapists. In terms of the hierarchy of evidence outlined previously, the medical oncologists are operating (at least rhetorically) from the top of the ladder (meta-analysis) whereas the CAM therapists espouse a subjective, individualised view of effectiveness (more aligned to the interpretivist traditions in research design). Thus, ontologically and epistemologically they are operating at very different ends of the spectrum; a schism that, as suggested by the oncologists above, makes it less likely that CAM modalities will produce the kind of evidence necessary to warrant consideration for direct funding by the NHS.

The objectives of the CAM therapists, however, also differed from those of the oncologists, with a focus on aspects of cancer care like patient comfort, lowering stress and anxiety, and reducing pain and nausea. As one CAM therapist suggested, ‘. . . as long as we are doing no harm, I don't think evidence really matters’. For the oncologists, however, the objective of the CAM treatment was not crucial, but rather, the scientific logic behind the intervention. Compromising on the level of evidence, based on the specific claims being made about the treatment (e.g. supportive or calming rather than curative), was viewed as a form of slippage away from the ideal of evidence-based practice.

Given the arguments presented thus far, we were interested in these oncologists’ views on the provision of CAM to patients in their hospital and how they interacted (if at all) with the support centre and the CAM therapists operating within it. Of specific interest, given the rhetoric of evidence-based practice, were their views on the fact that their hospital was providing therapies that were not supported by biomedically-defined scientific evidence.

Getting CAM in the back door

A key argument amongst the medical community, justifying the delimiting of many CAM modalities, has been the ethical practice of only treating patients when high quality evidence is available; although, we have already seen the rather subjective nature of this concept of being evidence-based. Our concern in this study was not so much this double standard in relation to the need for evidence. Rather, it was how the clinical staff made sense of the fact that their Trust offers cancer patients a range of CAM therapies despite this ethical practice. As we see in the excerpt below, the clinical staff (and the hospital management), had developed a series of rationalisations which allowed them to avoid addressing what might be a clear deviation from the rhetoric (and organisational policy) of evidence-based medicine, and perhaps more importantly, from subjecting CAMs to the same processes of legitimation as biomedical treatments (thereby potentially denying a highly popular service to cancer patients):

Interviewer:  Out of interest, how did the [complementary] therapies in the [name of hospital centre] get passed by the hospital management if they . . . 

Medical Oncologist: Well, they are not being paid for by . . .

Interviewer:  So they have no ethical responsibility?

Medical Oncologist: That's a very good question. Yes, they are not seen as therapies offered by the hospital.

Interviewer:  They are offered to every cancer patient that goes in there?

Medical Oncologist: Yes, but not by the Trust. The [volunteer sector organisation] is providing an environment and often those therapists are offering that service for free.

Interviewer:  So, the hospital has no ethical obligations if it has not been paid for?

Medical Oncologist: Correct. If it is not being seen to be delivered by the Trust (Research and Clinical, Male, 43 years).

In this excerpt we see the way in which this particular Trust, and its oncologists, pragmatically draw a line between what they provide and what they do not provide to patients. This strategy of demarcation (i.e. Trust sanctioned/not Trust sanctioned) has both a potentially positive and negative impact for CAM therapies and therapists. On the one hand, it allows CAM therapists to operate in the hospital system (at least geographically), and get a foothold in cancer care within the hospital premises. However, it also isolates them, financially and professionally, giving them a right to treat, but not the right to legitimacy within the hospital system. Thus, we see a kind of pseudo integration whereby CAMs are allowed in the back door. This idea of turning a blind eye also emerged in the interviews with the nurses:

Specialist Breast Cancer Nurse: My response is invariably going to be if that is something that you want to do, then go for it. They are not going to let them have anything at the [centre] that the consultant isn't going to be happy with . . . and if they do, then I don't want to know about it. [laughs] . . . (Female, 46 years)

As well as organisational strategies to accommodate (but not encourage) integration the medical specialists interviewed also utilised particular strategies to limit the clinical legitimacy of the CAM therapists working in the hospital. As evidenced in the excerpts below, and in the interviews with the clinicians, there was a deliberate policy of unspoken disapproval combined with a strategy of accommodation in the medical consultation. Moreover, particular strategies were employed to prevent communication between the CAM therapists and the consultants, which ultimately, formed one part of a deliberate process of professional distancing:

Medical Oncologist: I don't refer people for any, like, complementary therapies but I point people sometimes in the direction of the [hospital-based CAM centre] for the support of things it has on offer and mention that there are things available there.

Interviewer:  What's the difference between ‘referral’ and ‘mention’?

Medical Oncologist: I suppose it would be about me . . . I think a ‘referral’ is if I actually wrote to a practitioner with details about a patient and said, ‘Please see this patient with whom I've discussed X, Y, Z’ (Research and Clinical, Female, 48 years).

Medical Oncologist: I wouldn't refer anyone there. I wouldn't stop them but I wouldn't refer them either (Research and Clinical, Male, 43 years).

CAM Therapist: . . . we write to every consultant of every new referral and we very rarely get a response, you know, saying that this person has been either self-referred or has been referred, and just, if they have any issues, will they let us know, but we hardly ever get a response . . . they don't acknowledge us here (Aromatherapist, Female, 58 years).

None of the oncologists interviewed said they would be willing to refer a patient for CAM as this would signify a formal network between them and the CAM therapists, but also, it would signify support for the clinical legitimacy of the CAM practices offered. The majority would not mention the hospital's support (and CAM) centre to patients, but some would be willing to discuss it if the patient brought it up. Moreover, as one specialist said, ‘If I suggest they go there, then clearly I'm saying these things are effective. Well, I can't say that’. Ethics, in this context, albeit implicitly, is used to rationalise professional distancing.

As illustrated in the results presented thus far, there are considerable barriers to the provision of CAM to patients in the hospital setting, with organisational and individual strategies to limit integration and the legitimacy of CAM practices. Ethics, evidence and the scientific mind are used to both delineate discursively and delimit practically the integration of CAM in the hospital setting. Although, on the surface, there is apparent integration (i.e. existence of a CAM centre), there is little or no involvement between the biomedical services and the CAM services within this hospital. Moreover, internal procedures and individual practitioners are actively limiting the integration of CAM therapies into UK cancer services. It is clearly the case that acceptance of treatments and treatment funding decisions, within this context, is not merely about having the evidence available, as per the biomedical ideal. Rather, the paradigmatic underpinnings of a particular modality are vital and informal systems develop within organisations to delimit practices that are incommensurable with the biomedical paradigm.

The hospice context: balancing public support, clinical legitimacy and religiosity

Whilst the hospital staff were concerned about levels of evidence and clinical efficacy, the hospice staff took a very different approach to integration. Rather than focusing on the biomedical hierarchy of evidence, concerns amongst the hospice staff and management were orientated towards providing a comfortable, holistic environment for patients and meeting public needs. However, maintaining public donations was also an important factor driving decision making and there was considerably more pressure to provide a range of therapeutic modalities to be competitive with other hospices. CAM therapies were seen to bolster the legitimacy of the hospice's approach to end-of-life care, regardless of the level of evidence available to justify their provision. Within this organisation context, however, there was considerable concern regarding the ideological basis of certain CAM modalities, and the potential of CAM therapies to disrupt prevailing belief systems such as Christianity:

Palliative Care Specialist: . . . we have got to tow a very sort of very middle path with [complementary therapies] because, you know, we have to both be encouraging with new therapies . . . but at the same time, we have to also, you know, protect our reputation so to speak.

Interviewer:  Is it tied to funding?

Palliative Care Specialist: Yes, you know the PCT [Primary Care Trust] might have a comment on [CAM] but unlikely. It is more likely to be that the public are saying, ‘Well, how come you are providing this?’ and that may impact on public donations to the hospice which we rely on. Also there is the religious element remember; this hospice was founded by [religious organisation] so there is quite, you know, some people who are extreme in their religious views – they almost see this, you know, complementary therapy, as being, you know . . .

Interviewer:  Evil?

Palliative Care Specialist: Akin to the devil, it's the devil itself, so you know we have to also be mindful of those sorts of things (Hospice management, Male, 39 years).

Hospices have to negotiate very different issues in relation to the integration of CAM. Securing funding drives decision-making significantly more than in the hospital setting, and furthermore, the resistance of the PCT to intervene in palliative care services means that there is limited political pressure put on the hospice either to integrate, or to limit the integration of, CAM. Moreover, a degree of separation from the bureaucratic structures of the NHS means that the biomedical evidence hierarchy can be more easily sidelined as a driving force behind funding decision-making, and can be replaced by a more patient-centred focus on individualised, subjective outcomes.

It was evident that popularist demand for different modalities drove hospice decision-making much more than the hospital setting. Moreover, religious roots (particularly given the Christian roots of the hospice movement) and community beliefs create a very different set of pressures from those experienced by the hospital staff. Death has traditionally been associated with religiosity, and given the fact that a large proportion of UK citizens consider themselves religious (ONS 2001), great sensitivity is needed, by the hospice, to ensure that prevailing religious values are upheld, whilst providing a holistic approach to end-of-life care. CAMs have long been at odds with the more fundamentalist Christian belief systems (Melton 2001), particularly evangelical Pentecostalism, and thus, offering CAMs espousing new age or alternative transcendental values potentially creates problems for the hospice.

In large part, as illustrated later in this discussion, this particular hospice manages these potential paradigm clashes (both regarding religious values and the biomedical model) through tight controls on discussion about the ideological facets of the CAMs delivered and the ways in which CAM therapists are allowed to interact with, and represent their therapies to, patients. This has important implications in terms of the potential translation (see Star and Griesemer 1989) of CAMs within the hospice, such as the weakening of ideological bases and the biomedicalisation of CAM practitioners. As discussed below, the enlistment of selected CAMs within the hospice movement may have unintended implications for CAM modalities as biomedics select out particular practices and types of individuals to deliver them, and in the process, influence the very character of the therapeutic process.

The nature of palliative care

Another important influence on the nature of CAM integration in the hospice relates to the nature of palliative care. Many existing biomedical palliative care treatments are not evidence-based due to the immense difficulties involved in constructing clinical trials of patients near death (Bain et al. 2003). The biomedical medical hierarchy of evidence, espoused by the hospital-based oncologists interviewed, is simply impracticable within this context resulting in a institutionally specific reassessment of what constitutes a high enough level of evidence. For example, as stated by the palliative care specialists interviewed here, there is considerable experimentation with new regimens if standard treatments are not effective in relieving pain – a flexibility not seen to this degree in the hospital system. In this context, anecdotal evidence, clinical judgement and adaptation to the patient are central to palliative care (Bain et al. 2003). Few palliative care interventions have been subject to randomised controlled trials let alone systematic reviews, and palliative care clinical practice has something of an affinity with particular forms of evidence, which, in the biomedical hierarchy, are low. This places palliative care much closer to CAM on the hierarchy of evidence (i.e. largely backed up by observational studies) and in its ontological and epistemological positioning, with considerable implications for how CAM is viewed in this context:

Palliative Care Specialist: We work in the field of palliative medicine where we use a lot of drugs that are not licensed, but, we use them, and the evidence on which we use them is little and small. I have got loads of examples where we use drugs where there has been two case reports that have been published, but, we have used it because we are struggling to find a solution, and the cost, the burden, seems low and the potential benefits seem considerable, then do it. It's the same process I think with complementary therapies because you know the evidence isn't going to be there.

Interviewer:  So what about ethical practice, as a clinician, to treat the patients with the best or most effective treatment and minimise any risk?

Palliative Care Specialist: . . . the patient is at the heart of the decision-making and therefore there may be interventions or manoeuvres that we do which can't be justified by evidence, but which, when put in the context of that individual patient, would seem wholly right and that is exactly the same as complementary therapies.

Interviewer:  Some people would say that low-grade evidence is worse than no evidence at all; how would you respond to that?

Palliative Care Specialist: Some people would say high grade evidence is worse than what you see in front of you . . . (Hospice management, Male, 39 years).

This quote, and many others during the interviews with the hospice clinicians, illustrates the very specific context of palliative care, and in particular, how experiential knowledge and minimising harm become crucial aspects of decisions to offer particular treatments. The individual patient and how they respond to treatment come to the fore, and the rhetoric of EBM or EBP does not feature in their accounts. Thus, within this context, CAM is enlisted as another facet of a patient-centred approach to dying and palliation; a context in which evidence seems secondary to individual anecdote and clinician intuition.

At an organisational level, this strategy of enlisting selected CAMs pragmatically secures the future of the hospice by being competitive and maintaining public funding. Integration thus forms one part of an organisational strategy to achieve relative durability and to secure its position within a network (Law 1994). Moreover, there may be interplay between CAM integration and a desire for intra-professional differentiation in a historical context in which palliative care has been something of the black sheep amongst the medical specialties. Palliative specialists’ enlistment of CAM, within their organisational context, may function as a means of intraprofessional distinction, contributing to the legitimacy of palliative care through constructing it as a more patient-centred, open-minded and holistic sub-specialty of medicine. This process mirrors that seen in the nursing profession, with particular elements separating themselves out and using CAM as a method of intra-professional distinction and legitimation (Tovey and Adams 2003).

Enlistment and translation of CAM in palliative care

As Star and Griesemer (1989) argue, however, such processes of enlistment may have multiple and complex effects not necessarily intended by the original action. We argue similarly that, in the context of integration, the process of enlistment may actually inscribe CAM practices, potentially weakening their ideological base and delimiting the therapists’ role in patient care. To illustrate this potential, within this hospice, there were strict rules about how CAM therapists could relate to patients, and in particular, what role CAM therapists could play in patient care. CAM therapists were given clear instructions about the claims that could be made about the therapies they were providing, appropriate ways of describing them, and what other aspects of care they could discuss:

Interviewer:  How do you decide what therapies to introduce?

Complementary therapy co-ordinator/Nurse: We use the touch therapies . . . they are not an alternative health system so it is very much complementary . . . I am not a purist, we don't use the word healing, because then, if we use the word healing, we need to explain what we mean by healing regards about cure . . . I don't think there is a need to [go into] all the intricacies of the differences between reiki or spiritual healing or therapeutic touch. It is basically about explaining to patients what will happen head to toe . . . I am currently drawing up a patient information leaflet on reflexology. I initially talked about flushing the toxins out, but we had to take that out because, that is just not our medicine here. For complementary therapies to advance in NHS-type settings we have to take into account conventional healthcare professionals who might be reasonably sceptical about the claims complementary therapists make (Female).

The complementary co-ordinator seen above, who is also a nurse, instructed the CAM therapists, in consultation with the medical specialists, on their role and how they should relate to patients. This involved making sure that certain claims were not made to patients (i.e. ability to heal) and certain discussions were not had (i.e. what biomedical treatments they are on, and potential implications). In this way, clear boundaries are constructed between biomedical versus CAM clinicians’ roles within the hospice. Moreover, in the job interview process, CAM therapists are quizzed both on their skills, but also what they believe their therapies can achieve. In this way, the medical staff carefully monitor both the CAM modality and its representation. Moreover, modalities viewed as explicitly counter to biomedical knowledge of the body were rejected, with the healing and touch therapies (which were represented as soothing and calming) preferred over more interventionalist and diagnostic therapies (e.g. diets, supplements, herbalism, naturopathy, homeopathy).

As seen in the excerpts presented above, the organisational context of the hospice environment is distinct from that of the hospital, both in terms of the perspectives of the staff on what constitutes evidence and the ways in which CAM integration impacts on the success of the organisation as a whole. The evidence hierarchy is much less significant than patient and carer anecdotes about the success of the CAM therapies and the degree to which therapies are supported by the general public (feeding into donations). Organisationally, CAM therapies make the hospice stronger, and professionally, the use of CAMs is not particularly ideologically threatening given the flexible and holistic approach espoused by the palliative care clinicians.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

In this paper we have attempted to shed light on the complex processes involved in the integration of CAM in two organisational contexts. Our focus here has been on practitioners. This is of course not to deny the importance of other aspects of the integration process (e.g. the way in which patients act as drivers of change). They are simply beyond the scope of our discussions here.

The ways in which a range of differently positioned practitioners conceptualise and utilise evidence has been a key focus of this paper. As such, the biomedical hierarchy of evidence provides a central conceptual framework for understanding dynamics at the point of CAM integration. This analytical schema sits at the core of the debates seen here regarding clinical effectiveness and professional legitimacy. As we have seen, the hierarchy of evidence – and its ontological and epistemological bases – forms the rationalisation for both clinical legitimacy and professional exclusion. However, the ways in which organisations (and medical specialties) view and utilise this hierarchy of evidence is not linear. In fact, how biomedical clinicians view evidence is variable, and the ways in which CAM integration is occurring is organisationally specific. In this study it emerged that the structural characteristics of specific medical specialties meant that they had a greater or lesser affinity with different types of evidence (i.e. palliative care versus oncology) necessarily affecting their relationship with CAM.

In the hospital context examined here, biomedical clinicians employed discursive and regulatory strategies to delimit CAM integration and to delineate biomedicine from CAM treatments. Discourses of the evidence hierarchy, the superiority of scientific mind and being ethical formed a crucial part of professional gate-keeping. These clinicians’ descriptions of their own profession (e.g. evidenced-based; scientific; sceptical) and those of CAM (e.g. unscientific; inspirational; nice but unnecessary) represent a process of discursive delineation of CAM and biomedicine, justifying institutional fragmentation of CAM and biomedical treatments, and reinforcing the historical occupational control held by oncology consultants.

Such strategies of distinction on the part of these medical specialists have an element of justification in the sense that, regardless of the limitations of the evidence in oncology, higher levels of evidence do exist for biomedical cancer treatments. As seen in this study, however, this schism is exaggerated rhetorically (as a form of boundary work), but also, it is often deployed uncritically with no sense of the ontological and epistemological tensions critical to understanding how knowledge and evidence are produced.

As well as methods of discursive delineation, organisational structures and informational practices have developed, at least within the Trust examined here, to ensure that CAMs can be provided but not legitimated, with rigid (albeit in policy only) frameworks and informal networks existing for introducing new treatments, preventing CAMs from gaining internal funding. Avoiding directing patients to CAM services and refusing to establish cross-referrals is a powerful way in which the oncologists restrict the role of CAM within the hospital setting.

In addition, by funding CAMs and delivering them through ‘the back door’, the volunteer sector effectively compensates for the refusal of clinical staff and the hospital management to address complex issues of effectiveness and the evidence-gap contradiction evident in their funding of some biomedical cancer treatments. Allowing CAM treatments to be delivered (or passively accepted) is a pragmatic act by the Trust and probably improves patient care, but it also potentially undermines the legitimacy of the CAMs offered and the therapists involved. It also allows hospital management and staff to avoid dialogue about complex paradigmatic issues and methods of gauging effectiveness which could lead to increased continuity of care and more effective communication between CAM therapists and the biomedical clinicians.

The hospice staff, however, were distinctly more orientated toward patients’ subjective needs, community support and inter-organisational competition. Rather than attempting to limit the integration of CAM as seen in the hospital setting, their strategy was to enlist (see Star and Griesemer 1989) selected CAMs to boost the legitimacy of the hospice as a competitive environment for end-of-life care; a process made significantly easier by the low level of evidence available for their existing biomedical palliative treatments and the non-interventionist policy of the PCT.

In saying this, however, our data also showed that CAMs were closely regulated within the hospice with only the healing and touch therapies provided due to perceptions of their benign and uncontroversial nature. Practices like homoeopathy and naturopathy were not offered because of their objectives (i.e. actually to treat disease rather than merely to alleviate pain or anxiety) and the need to consume treatments physically, illustrating considerable differentiation in how individual CAMs (with differing objectives and levels of evidence) are treated within this context. Tight control was maintained over claims-making by CAM practitioners, and nurses were placed in co-ordinating roles to restrict ideological claims and monitor the patient/therapist relationship.

Star and Griesemer (1989: 389) write about this process of strategic enlistment, arguing that entrepreneurs gradually enlist participants ‘from a range of locations, re-interpret their concerns to fit their own pragmatic goal and then establish themselves as gatekeepers’. This process, they argue, occurs as actors negotiate with others within a given network, establishing alignments to build support and reinforce their position – a process that inevitably transforms both the enlister and the enlisted. Likewise, the integration of CAM in the hospice movement will ultimately influence the character, albeit in a limited way, of both CAM and palliative care medicine. Although integration may provide more exposure for certain CAM practices and practitioners, this process may fundamentally alter what is CAM and what it is to be a CAM practitioner (as well as the character of palliative care as a medical specialty), as particular actors seek to influence the character and representation of CAM practices, enlist certain modalities for their own goals, and in doing so, change the very nature of therapeutic practices.

For some of the CAM practitioners, operating within a biomedical context was something of a trade-off, in that, on the one hand, they gained a degree of professional legitimacy (a form of distinction from other CAM practitioners) but also lost a degree of professional autonomy and ideology. However, they also viewed their role as an opportunity to influence the nature of cancer and palliative care in the UK, inscribing their own perspectives of illness, death and wellbeing on the UK cancer services, as well as opening themselves to other actors’ strategies of inscription and translation.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

Given the results of this study, we argue that the integration of CAM should not be conceptualised as a mere challenge to biomedicine, or, as potentially contributing to this rather linear process of deprofessionalisation (a waning of biomedical authority). Rather, it should be seen as producing a complex array of responses, including evolving processes of strategic adaptation on the part of specialists and NHS organisations; processes that are organisationally specific and that do not necessarily represent a breakdown in biomedical clinicians’ authority or status. Within the hospice, integration is actually key to the overall organisational goals and professional needs (i.e. offering competitive, holistic, popularist care). As a result, biomedical clinicians working in this context, who perceive CAM as an inevitable (but not necessarily appropriate) part of cancer care, are finding ways to enlist (or shape) CAMs to complement their professional role and the strength of their organisation. Others, such as the clinicians in the hospital interviewed here, may view CAMs as a threat to their professional practices and biomedical ideological view, resulting in the deployment of particular discursive and regulatory strategies to delimit the integration, and expansion, of CAM services.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References

We would like to thank the anonymous referees for their helpful comments on earlier drafts of this paper. This project was funded by a Department of Health Research and Development Grant (09/02).

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  4. Background
  5. Methods
  6. Results
  7. Discussion
  8. Conclusion
  9. Acknowledgements
  10. References
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