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The problematic nature of conflating use and advocacy in CAM integration: Complexity and differentiation in UK cancer patients’ views

Philip Tovey
School of Healthcare, University of Leeds, Leeds, United Kingdom

Alex Broom
School of Social Science, University of Queensland, St Lucia QLD, Australia

Abstract

The integration of complementary and alternative medicine into cancer care is widely debated. Advocates of integration frequently cite the popularity of such therapies amongst patients in support of their case. However, little specific empirical attention has been given to how integration is actually regarded by these patients.

Based on semi structured interviews with 80 cancer patients in the UK, this article examines the assumption of a link between use and support for integration. On the basis of this study we argue that:

1. A characterisation of unequivocal cancer patients' support for integration (even amongst those who use CAM) is an over-simplification and distortion of the situation
2. It is inappropriate to conflate ‘use' with ‘advocacy'
3. Patients' engagement with the idea of integration is complex and multi-layered; and
4. This complexity can be explicated by looking at key dimensions of an integrative process: evidence and risk, cost, and provider legitimacy.

Keywords

complementary and alternative medicine, cancer, integration, UK, sociology

Article Text

Calls for the integration of complementary and alternative medicine (CAM) into cancer care are ubiquitous. The notion of ‘integrative medicine' has been hotly debated in the medical literature over the last decade (eg Caspi et al 2000; Ernst 2005a). However, there still exists little or no consensus on what integration actually means in oncology contexts, or indeed, the most effective means of achieving ‘an integrative approach' to cancer care. Much of the debate about integration in cancer care has centred on evidence production and the degree to which CAM therapies can be justified in a UK policy context espousing evidence-based practice (Ernst 2005a). Regardless of such debates, pockets of grassroots integration are becoming more evident in the UK, particularly in the context of palliative and hospice care (Broom & Tovey 2007). However, little empirical attention has been given to how attempts at integration are actually regarded by cancer patients.

The work which has been done in the area of CAM and cancer has focused on what cancer clinicians and other biomedical stakeholders think of actual or potential integration (eg Hewson et al 2006). As a consequence, a tendency to conflate use of CAM services with support for the process of integration into state funded services has emerged. It is regularly assumed that the majority of cancer patients' view CAM integration as prima facie good (eg Frenkel & Borkan 2003). However, this assumption has little empirical evidence to back it up. While high levels of personal usage amongst cancer patients (see Cassileth & Vickers 2005) may translate into widespread support for integration into public service delivery, this cannot be treated as inevitable. To date, we know little about cancer patients' views of: the benefits and limitations of integration; the relative importance of evidence in driving integration; the relationship between financial cost versus physiological (and psychological) benefit; and finally, the importance of the context of delivery (ie location/provider type) on experiences of integrative care.

The aim of this article is to examine empirically this assumption of cancer patients' support for CAM integration. In so doing we argue that:

1. A characterisation of unequivocal cancer patients' support for integration (even amongst those who use CAM) is an over-simplification and distortion of the situation
2. It is inappropriate to conflate ‘use' with ‘advocacy'
3. Patients' engagement with the idea of integration is complex and multi-layered; and
4. This complexity can be explicated by looking at key dimensions of an integrative process: evidence and risk, cost, and provider legitimacy.

Background

There has been much debate about the potential benefits and pitfalls of integrating complementary and alternative medicines into the NHS cancer services (House of Lords 2000). Although there is already sporadic integration, CAM is not provided on a systematic basis to NHS cancer patients despite substantial private usage. In May 2006 the Foundation for Integrated Medicine (2006) presented findings from a report commissioned by the Prince of Wales, arguing for greater momentum toward the integration of CAM into the NHS. This was strongly rebutted by prominent members of the British medical establishment who promptly called for any existing funding of CAM (however limited) to be discontinued (Baum 2006) in a very public denigration of CAM. Despite the more consensus-driven approach of the last decade, integration remains a contentious issue amongst practitioners and policy makers.

It is useful, for the purpose of providing a background to the results presented below, to outline some of the key issues in such debates about integration. In particular, we focus here on those related to: 1) evidence of effectiveness, 2) risk of harm, 3) cost effectiveness, and 4) provider legitimacy.

Evidence

The most prominent debate regarding CAM integration has been over evidence of effectiveness and the need to adhere to the basic tenets of evidence-based practice (EBP). It is commonly argued that CAMs have little high level evidence to back them up in terms of cancer care and thus should not receive NHS funding, although, it is not entirely irrelevant that many biomedical cancer treatments lack this very high-level evidence (Broom & Tovey 2007). Regardless, debate continues as to the degree to which CAM modalities are backed up by biomedical-type evidence.

Despite common perception, there is, in fact, some evidence of effectiveness for certain CAMs for cancer care. Randomised controlled trials (RCTs) have shown that acupuncture and acupressure are practical, safe, and inexpensive ways of reducing nausea and vomiting after cancer treatment (eg Ernst 2001; Filshie 1990). Forms of healing (eg 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 well-being in cancer patients (see Ernst 2001; Taveres 2003; Carlson et al 2004). However, other CAM therapies provided by some NHS organisations, such as aromatherapy, massage and reflexology, have little high level biomedical evidence to back up their efficacy in cancer care (Corner et al 1995; Soden et al 2004; Stephenson et al 2000).

Biomedical cancer treatments are currently more evidence-based than most CAMs (Broom & Tovey 2007). However, inevitably such debates about evidence have led to questions about the measurement of treatment effect; trial design and implementation; and the problems associated with complex interventions. Most biomedical interventions are well suited to their existing methodological processes and thus have little to gain from methodological restructuring. Varying degrees of publication bias also mean that biomedical journals may be more likely to publish negative findings for CAM interventions. Language of publication restrictions in systematic reviews also result in different results depending on whether the intervention was biomedical or complementary (ie CAM interventions are more likely to be tested and published in non-English contexts) (Pham et al 2005). Moreover, little attention has been given in debates about evidence to how cancer patients themselves assess effectiveness and the degree to which they view an evidence-base as necessary for integration (or as a justifiable means of excluding CAM therapies).

Risk of harm

Risk of harm associated with use of CAM by cancer patients is an area of concern to both clinicians and patients. It is not uncommon for patients to assume that CAMs are largely benign, and pose no significant risks to cancer patients. This assumption has been shown to be inaccurate (eg Ernst 2002, 2005; Pittler & Ernst 2003). There is, for example, evidence in the biomedical literature of interactions between selected CAMs and biomedical cancer treatments (Weiger et al 2002). The exclusion of CAM from patient care can thereby be justified, some would argue, purely on a lack of evidence of safety, regardless of evidence of effectiveness. However, risk is a complex issue and is quite subjective to the individual patient. Exactly what level of risk is acceptable is not an easily quantifiable entity. In biomedical treatment, risk is generally assessed relative to quantifiable benefit as evidenced in RCTs. If, for example, intensive chemotherapy gives an 80 percent improvement in 5-year survival, but increases the chances of developing leukaemia ten-fold, a medical specialist may still argue that this is a reasonable risk-to-benefit ratio. Clinicians are regularly faced with the risk/benefit ratios like this, but yet, assessment is highly subjective to the individual patient. Such problems are compounded when, as is often the case with CAMs, benefit is also disputed. In such cases, even very small, anecdotal risks related to CAM, can be used to rationalise their exclusion (Broom & Tovey 2007). It is also the case that some commonly used CAMs offer virtually no chance of risk (eg reflexology, rieki and aromatherapy) indicating the need for a nuanced approach to assessing the merits of integration.

Cost effectiveness

Estimates of the cost effectiveness of CAMs are infrequent if not non-existent for many interventions. In the case of cancer care they are virtually non-existent, and indeed, issues related to cost-effectiveness become more ambiguous in this disease context (i.e. whether perceived alleviation of symptomology is ‘cost effective'). Canter et al (2005) found that use of a number of evidence-based CAMs for a range of health problems (not related to cancer) was actually more expensive than usual (biomedical) care; moreover they found that the outcomes may also not have been as good for the patients (the treatments were still effective, but not as effective as usual care). Of course, in the context of cancer care, notions of cost effectiveness become complicated by the emotive nature of the disease and public support for the alleviation of suffering by any means possible (regardless of, say, documented quantifiable treatment effect). Thus, the question of cost effectiveness is transformed into the question of, ‘does it benefit the patient enough to warrant funding?'

From the limited research available, what we do know is that even when patients are given the choice, it is likely that actual costs for alternative services compared with those associated with biomedical cancer care will be extremely low: less than 2% in a group of insured cancer patients in the US (Lafferty et al 2004). Moreover, relatively cheap interventions may have a significant impact on patient satisfaction with care (eg Milligan et al 2002) and lower usage of biomedical pharmaceuticals.

Provider type and context

There is considerable debate about who should provide CAM to cancer patients, if indeed integration is to occur, including the roles of nurses, allied health professionals and CAM therapists in such provision (eg Frisch 2001). Such issues are far from clear-cut with arguments about the watering down of CAM ideology and clinical expertise when provided by non-CAM clinicians (ie with limited training in CAM interventions). There are also arguments about the advantages of using nurses with existing therapeutic knowledge to ensure the ‘safety' of CAM delivery. However, the significant CAM advocacy within certain elements of the nursing profession (eg Chong 2006; Lengacher et al 2006) has been viewed by some as the expropriation of CAM by nurses. As seen in the current study, in NHS settings where CAMs are provided, nurses are often placed in co-ordinating roles. CAM advocates often argue that such processes of the enlistment of CAMs (and in actuality, their translation) (see Broom & Tovey 2007), merely function to water down ideology, biomedicalising CAM rather than providing integrative (ie integrating both CAM and biomedicine) holistic cancer care. However, there has been no research on what cancer patients actually prefer and for what reasons.

The context of provision is also related to this point. As yet there has been no research done on the importance of the setting (ie clinical/non-clinical) on experiences of CAM. We know virtually nothing about experiences of hospital-based CAM therapies versus those received within the community. ...continues...

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