1 JOURNAL OF PALLIATIVE MEDICINE Volume 11, Number 1, 2008 Mary Ann Liebert, Inc. DOI: /jpm (Using) Complementary and Alternative Medicine: The Perceptions of Palliative Patients with Cancer JAKLIN A. ELIOTT, B.A. (Hons), Ph.D., 1 COLIN P. KEALEY, B.S.M.D., 2 and IAN N. OLVER, M.D., Ph.D. 3 ABSTRACT Use of complementary and alternative medicine (CAM) is increasingly common within Western societies, including Australia. This parallels calls for or claims of integration of CAM into mainstream medical practice, with oncology and palliative care specifically nominated as appropriate arenas for integration. However, there is an absence of studies examining patient perceptions of both CAM and CAM users. In this study, 28 adult patients with cancer close to death were interviewed regarding treatment decisions at the end of life, including decisions about CAM. Thematic analysis of transcribed interviews found consistent differences in talk around CAM between 12 users and 16 nonusers of CAM, primarily related to the perceived value of these treatments. Drawing upon a mind body discourse that holds individuals responsible for their health, users valued CAM for the perceived benefit to physical or psychological well-being and compatibility with a holistic approach to health care, deemed to complement or augment conventional medicine. However, some were selfcritical of their failure to continue with CAM, despite practical and financial difficulties experienced. Nonusers devalued CAM as unable to cure their disease (but did not similarly devalue conventional medicine), and negatively construed CAM users as desperate, or as challenging medical wisdom. Despite increased legitimation and medicalization of CAM, patients assess CAM differently to allopathic medicine, with different (positive and negative) assessments attributable to users. The misperception by many (nonusers) that CAM are intended to cure and available negative moral and social judgments centred around CAM use may deter patient uptake of CAM in areas where they have proven efficacy in symptom control. INTRODUCTION DESPITE SIGNIFICANT ADVANCES by scientific medicine, use of complementary and alternative medicine (CAM) is increasing worldwide. 1 3 The typical user of CAM is consistently reported as more likely to be female, young to middle aged, white, with higher levels of income and education, and to have particular health characteristics including overall poor health, increased levels of pain, increased anxiety, reduced quality of life, and chronic illness. 4 6 It has been suggested that CAM is most useful for relief of conditions that conventional approaches do not satisfactorily treat, and specifically for symptoms associated with cancer or cancer treatment when palliation rather than cure is attainable. 7,8 However, a systematic review of 26 surveys worldwide reported CAM use among adult patients with cancer to be between 7% and 64% with an average of 31%. 9 Similarly, reported use in patients with cancer in Australia varies from as low as 14.5% for elderly women, 10 to 22% 52% for all patients with cancer, 11,12 and 1 Cancer Research Centre, Royal Adelaide Hospital, Adelaide, South Australia, Australia. 2 Carver College of Medicine, University of Iowa, Iowa City, Iowa. 3 The Cancer Council Australia, Sydney, New South Wales, Australia. 58
2 PATIENT PERCEPTIONS OF (USING) CAM 59 32% 48% for patients with incurable cancer, with evidence that rates of CAM use increase as death approaches THE PROBLEM OF DEFINITION Wide variances in reported prevalence of CAM may be attributable both to the differences in populations sampled and definitions of CAM used. 9,15 Defining CAM by inclusion is problematic as it refers to a heterogeneous category, including a wide range of products and practices. 7,16 18 CAM modalities encompass multiple and not always concordant meanings of the body and illness/health, 19,20 and have a range of legitimacy accorded by medical practitioners, 21,22 oncologists, 23 and researchers alike. 12 Accordingly, some have noted that it is of questionable validity to treat all CAM as if equivalent. 17,24 Some have attempted to classify CAM into different categories, but the number and nature of these vary considerably. For example, in their study examining choices of unconventional treatment by patients with cancer, Kimby and colleagues 25 differentiated between two principles of [unconventional] treatment, being standardized (offered to all patients: e.g., acupuncture, dietary supplements), and individualized (offered to selected patients, e.g., homeopathy, psychotherapy). Tataryn 20 proposed four hierarchically ordered paradigms based on assumptions of health and illness associated within each. They were body (e.g., shark cartilage, massage), mind body (e.g., hypnosis, meditation), body energy (e.g., Ayurveda, therapeutic touch), and body spirit (e.g., faith healing, prayer). The National Centre for Complementary and Alternative Medicine 26 currently identifies four types: whole medical systems (e.g., Ayuveda, homeopathy), mind body medicine (e.g., meditation, prayer), biologically based practices (e.g., dietary supplements, shark cartilage), manipulative and body-based practices (e.g., chiropractic, massage). Kapchuk and Eisenberg 27 specifically noted a potential semantic chaos, with no agreement on terminology, but went on to propose a two-tiered system of varieties of unconventional healing 28 separating out CAM from parochial unconventional medicine (three categories: ethno-medicine [e.g., Hmong practices], religious healing [e.g., Christian Science], folk medicine [e.g., copper bracelets for arthritis]). CAM itself, they proposed, consists of five main sectors, namely, professional systems (e.g., massage, homeopathy), popular health reform (e.g., nutritional supplements, macrobiotics), new age healing (e.g., therapeutic touch, Reiki), mind body (mind cure: e.g., guru-endorsed techniques such as affirmations; mind body: e.g., hypnosis), and nonnormative scientific enterprises (e.g., iridology, chelation). With some justification it has been observed that individual practices or modalities can be difficult to cleanly categorize 18 ; that, for example, meditation or massage may feature within several different CAM practices, with different assumptions regarding their mode of operation. Notwithstanding the diversity of practices and products potentially subsumed within CAM, the common use of the term lends itself to the perception of CAM as characterized by some unifying feature, and some have suggested that this lies in a shared emphasis on a concept of vitalism : that living organisms are sustained by a vital force that is different from and greater than physical and chemical forces, often emphasising a mind body connection or notion of holism. 17,29 It has also been argued the defining feature of CAM is that CAM values subjectivity (i.e., the personal experiences of patients and practitioners) as the criteria for determining the worth of a practice addressing health care 30 ; and similarly, that CAM prioritizes the individual and personal knowledge of both healer and patient, emphasizing their agency and control in health and illness. 31 Typically, CAM is defined by exclusion, and positioned in relation to allopathic medicine, as either offering services not provided by or complementing orthodox or mainstream medicine, or through its absence within established medical practice a. 19,25,32 The very term implicitly defines CAM in relation to conventional medicine, being complementary when used with, and alternative when used instead of, allopathic medicine. 33,34 However, the boundaries between conventional medicine and CAM vary across time and place 25,27,35 and specific therapies may be complementary or alternative depending on the intent of the user. 22,35 Furthermore, as particular CAM therapies are subject to scientific testing and found to have some efficacy so they are incorporated into mainstream medical practice. 3,36 This has led some to recommend the subcategory integrative medicine as combining the a We note, however, the variable terms used to describe the dominant medical system within industrialized nations, including (but not limited to) orthodox, mainstream, clinical, scientific, allopathic, conventional, biomedicine, and traditional medicine. Although these are typically not defined, we take them to refer to health care practices and discourses that uphold scientific principles regarding cause and effect, are endorsed through their demonstrated efficacy during standardized experimental procedures, and subject to stringent governmental and professional regulation.
3 60 best of both. 3,35 37 However, some have questioned the desirability of integration, claiming this process not only incorrectly presumes ontological commensurability, but might divest CAM of its uniqueness, reduce choices available to consumers, and result in further marginalization and subjugation of CAM practices not so integrated. 17,26,38,39 Nonetheless, some claim that integration of CAM and allopathic medicine is already occurring within Australia, albeit at a slower pace than in the United Kingdom and the United States, 17 and point to many factors as evidence of this, including: the establishment of sanctioned university degree courses for CAM paralleling an increasing biomedical content of natural medicine courses; acceptance of some CAM by private health insurance institutions; granting of tax exemption status to some CAM practitioners concurrent with the development of professional regulatory bodies within some Australian states; increasing scientific testing of CAM with demonstration of efficacy in symptom control for some specific CAMs; increasing publication of CAM-based research within mainstream medical journals, and the emergence of CAM-specific journals; and the assertions that evidence-based CAM should be part of mainstream care, including from within the Australian Medical Association. 16,22,32,35 Simultaneously, claims within Australia that physicians (including general practitioners, palliative care physicians, and oncologists) should know about and discuss CAM appropriately with their patients 16,21,35,38,40 and specific advocacy regarding the merits of CAM, particularly for cancer, 23 or palliative care 40 patients, are supported by further calls for increased medical education about CAM, 36 with evidence that greater numbers of general practitioners are using, referring to, or specifically training in CAM. 22,41 Many similar developments have been observed internationally. 1,19,42 Within the medical literature, distinctions are sometimes explicitly drawn between use of CAM for cure or for care, with the former labeled as inappropriate and the latter as having merit, particularly where palliation of symptoms rather than cure is the focus of conventional medical treatment. 23,28,40,43 Following scientific testing, some specific CAM therapies have been found to have some efficacy in the context of cancer and palliative care. This has led to qualified endorsement for therapies such as hypnosis, meditation, relaxation, acupuncture, transcutaneous electrical nerve stimulation, massage, exercise, and some dietary regimes, particularly for improving patient psychological well-being and reducing troubling symptoms such as pain or nausea to the point where these might be considered part of mainstream care. 34,44,45 However, there are discrepancies between the use of CAM by patients with cancer and that recommended or approved within oncology and palliative care. Studies report that some patients with cancer, including with incurable or advanced cancer, do not access these (potentially beneficial) treatments. Conversely, although some patients use CAM in a manner approved by the medical wisdom (that is, to improve quality of life or for relief of symptoms), others expect that CAM will cure their disease ,46 49 Despite the increased medical focus on determining various correlates of CAM use or reasons for using CAM 4,6,12 14,28,47,50 little is known about the moral judgments associated with these or indeed whether they vary between CAM users and nonusers. Nonetheless, studies reporting that up to 75% of individuals choosing CAM report having done so because of recommendations by family and friends, 7,51 53 because they gain hope from CAM use, 11,48 or because of CAM s compatibility with a world-view, including a desire to take responsibility for their own health, 4,17,31,54 all indicate that CAM use has social and moral connotations. 6,20,50 CAM use is belief-centred [and] value-laden, 54 and if the trend toward increased integration between CAM and allopathic medicine is to continue, investigation of the meaning of CAM to patients in the context of medical treatment will enable clinicians to best advise patients on potential benefits and consequences of using CAM, and address any misperceptions that patients might hold regarding these. As both palliative care and oncology have been specifically identified as particularly suitable domains within which to promote integrative medicine, 3,8,34,38,40,43 in this study we sought to determine the views of terminally ill patients with cancer regarding the use of CAM. Our aims were not to investigate rates or reasons for CAM use in this group, but to articulate what patients said about using CAM or those who use them, to determine the assumptions they made about CAM use and CAM users, relating these to the justifications they presented for their own use or nonuse of CAM. METHOD ELIOTT ET AL. This study was conducted at the Royal Adelaide Hospital, South Australia, and approved by the hospital ethics committee. As part of a larger study on endof-life decision-making, patients from the hospital palliative and oncology clinics meeting selection criteria were asked to participate in an interview about mak-
4 PATIENT PERCEPTIONS OF (USING) CAM 61 TABLE 1. DEMOGRAPHIC AND DISEASE-RELATED DETAILS OF PALLIATIVE CANCER PATIENTS INTERVIEWED Details Number Age Mean (SD) 61.4 (12.8) Range Gender Male 15 Female 13 Partner status Married/partnered 18 Single 3 Divorced 4 Widowed 3 Highest education level Primary 7 Secondary 12 Tertiary 7 Unknown 2 Site of primary cancer Colorectal 6 Lungs 6 Breast 3 Lymph 3 Renal 3 Other 7 SD, standard deviation. ing treatment decisions at the end of life. Selection criteria were that patients were diagnosed with confirmed stage IV cancer, identified as within weeks of their death (82% dying within 3 months of interview), aware of this, with English as their first language. Based on their long-term clinical interaction, their attending medical oncologist assessed them as capable of coherent discussion and emotionally stable, therefore likely to suffer no undue effects due to the subjects raised. Follow-up counseling was offered but no patients accessed this. Twenty-eight patients provided signed informed consent to be interviewed (see Table 1 for demographic and disease-related details), and half of these chose to have a friend or family present, some of whom occasionally spoke. In this paper we analyze participant responses to the prompt questions, Some patients have talked about complementary and alternative medicine (CAM). Have you heard about CAM? What do you think about CAM? We did not provide definitions or examples of CAM in order to encourage patients to talk about their own perceptions of CAM, and not limit conversation to terms set by the interviewer. Interviews were audio-taped and transcribed verbatim, with text then entered into N6 software to facilitate analysis. Thematic analysis focused on the search for repeated patterns of meaning, 55 specifically looking at variation in how CAM were discussed by patients dying of cancer. In selecting quotes to illustrate discussed themes, all instances within a theme were compared and the most concise and representative quotes presented. 56 RESULTS Following sustained reading of the transcripts, patients were categorized into those who mentioned using CAM during their cancer treatment (n 12; 42%), and those who did not (n 16; 58%); two patients reported using CAM but identified as nonusers. Those patients who did use CAM typically said that CAM use was prompted by a number of factors, including a desire for cure, for social reasons, or to improve quality of life through control of disease symptoms or treatment side effects, whereas nonusers considered CAM-use to result exclusively from a desire for cure (Table 2). b There were consistent differences between the responses of those identifying as CAM users and nonusers. These centered on the possession of faith in CAM, perceived use or value of CAM (i.e., what was it for?) with associated judgments on using or users of CAM, issues of cost, and the relationship between CAM and conventional medicine. For all patients, regardless of use or not of CAM, CAM usage was consistently predicated upon a stated or implied mind body connection, specifically on the ability of belief to impact upon disease progression. CAM users typically said things like: You ve got to believe in it yourself to make anything work. If you believe in something, it ll help along the track. If you don t believe in something and you go the other way, you re soon gone aren t you. Nonusers did not deny the power of belief, but claimed not to have it, saying: I can t see me ever going into [CAM], I m not a great believer in things like that. I think in the end, sometimes [CAM] works because it works psychologically perhaps. But, in b Specific CAM identified as used by CAM users were naturopathy (3); homeopathy (1); Reiki (2); acupuncture (1); dietary supplements (8), specifically including laetrile (1), noni juice (2), colloidal silver (1), FloraEssence (1), and shark cartilage (2); dietary change focusing on improved nutritional practices (8); meditation (4); massage (2); relaxation (2); affirmations (1); and prayer (1).
5 62 ELIOTT ET AL. TABLE 2. REASONS GIVEN DURING INTERVIEW FOR WHY PATIENTS USED CAM Reasons given for CAM-use a Cure Social reasons Quality of life CAM-Users (n 12) 8 b 8 b 6 Non-users (n 16) 15 b a Totals exceed given n, as some patients gave more than one reason. b Six patients nominated both cure and social reasons. my case, there s never been anyone cured from mesothelioma.... Many nonusers spoke rather disparagingly of those undertaking CAM, characterizing them as desperately seeking a cure, often contrasting themselves favorably. Some depicted CAM users as different to themselves, being younger or prepared to travel to distant (more exotic) places. I think I m too realistic for these naturopaths, and all the rest... [T]hese others... get robbed left, right, and centre too, because they re that gullible that they ll do anything, but, no,... it s not my thing. I ve heard of no good coming out of any of it... I think you d grasp at anything. They want to [try CAM] if they re young, well they d wanna go on longer wouldn t they? A lot of people go to Queensland for those sort of alternatives, but I don t think it s of much value. The assumption of nonusers that the primary function of CAM was to provide cure also constituted some justification for their nonuse. Other potential benefits of CAM were typically deemed insignificant and dismissed. If it s [cancer] there, and it s uncurable, it s uncurable [sic]. Oh, I wouldn t be bothered. Patient: Oh, I ve read about [CAM], but... I don t want to spend the last six months of my life running around looking for an elusive cure.... Husband: She might get a little bit more healthier... or whatever. But it wouldn t alter the outcome at all. The two patients who had used CAM but identified themselves as nonusers also implied that the failure of CAM to cure their cancer constituted reason for their discontinuing CAM. Patient: No [I haven t tried CAM]. Apart from chemo, that s all I ve tried. Wife: He had a bit of almond kernels for a while, the apricot kernels, but Patient: Apple seeds. Interviewer: Why didn t you carry on with it? Patient: Oh, the first point of call was the hospital... and these days the percentages [of conventional treatment] are improving towards cures, and everything that I read, you couldn t get any strong evidence that alternative medicines were being any great use. We went on to shark cartilage, but we were too late for that I think, but we just tried that as a resort.... There s a lot of these people that claim that these things have cured these things, but there s no proof there that they have, so, good luck to them as far as I m concerned, but no, no. It was noteworthy that the framing of CAM exclusively in terms of treatment for cure was invariably associated with its nonuse. Given a judgment that cure was unlikely to result from CAM use, patients either failed to undertake CAM or discontinued its use once it became clear that cure was not likely to be attained, and in both cases were united in their dismissal of CAM. By contrast, the majority of CAM users identified CAM as providing benefits other than cure, these often constituting reasons why they undertook CAM. One of these was a physical benefit, either amelioration of the side effects of conventional medicine, or increased general well-being. What I found most interesting was [help with] the side-effects thing. [CAM] helps with congestion, it helps with just general well-being... I tried with an attitude, oh what the hell have I got to lose, and found that I felt better for them. This last patient also spoke of psychological gains from using CAM.
6 PATIENT PERCEPTIONS OF (USING) CAM 63 Patient: Lots of the other things are therapeutic because they come into the realm of nurturing.... I don t know that any would claim that they necessarily have therapeutic effects directly, but I enjoyed them. Interviewer: They made you feel better Patient: Yeah, yeah Interviewer: Even if they didn t make you better Patient: Yes, that s right. Her further speech constitutes endorsement of the philosophical underpinnings of CAM, away from conventional orthodoxy. Although she implied that her initial motivation was indeed to attain a cure, she also attested to the value of using CAM outside this goal, noting as well its positive effect upon her social world. I think the biggest thing has been the mental shift from being so conventional and logical and orthodox to being more open and aware and looking around, and taking pleasure in the sunshine and being with the children, [and] my friends.... It started off as a panic driven desperation of Ian Gawler [prominent advocate and success story of CAM treatment] did it and got better so therefore I will too, to become a much more philosophical decision. Some CAM users stated that they were influenced by social factors, specifically mentioning their consideration of opinions or recommendations of family. [My husband] has always been into [CAM].... I tend to let him have his way too often, but (laughs) don t we all? I wanted to pursue [CAM], but I found myself caught between a husband who didn t agree with it, and also the shock and the fright, and my decision after quite a lot of deliberating was to go with the conventional medicine first.... Patient: After I d finished with the chemotherapy and radiotherapy... I thought well, I ll go on that [CAM] further. Husband: But there was a certain pressure there. Patient: As in family wanting me to do it Husband: Yes as in family, wanting you to, to Patient: to do everything Husband: yes, to do everything... The language used in these recounts suggests that, once raised in a social context, the decision to use or not to use CAM has consequences in terms of how the individual patient position themselves and others in a familial relationship. It further highlights that use of CAM may not simply reflect an individual preference to undertake responsibility for their health, and points to the moral implications that may be drawn as a consequence of the decisions made. CAM users perceived CAM as providing a range of benefits beyond the focus on cure that dominated the accounts of nonusers. Yet some CAM users reported not continuing with specific therapies, typically attributing this to some moral lack in themselves, while simultaneously speaking of the costs of CAM use. I didn t have as much energy and as much zeal for [CAM dietary treatment] as I had the first time.... it s very expensive. So I was sort of not doing it as wholeheartedly as before. I did it for a couple of weeks and then I wasn t strong enough. And to prepare it all, you can buy the stuff, but it s about nine bucks a bottle, and you needed three bottles a day. Both CAM users and nonusers spoke of the high cost of CAM, but in terms that reflected a judgment of what CAM could or should do: If it was to cure, it was a waste of money, if it was to help you feel better, then it was not. CAM user: It was $40 a session, and the things I was taking all came to $80 worth of natural stuff... so to me that wasn t someone being over-ridiculous, or just give us your money. Nonuser: I wouldn t be bothered. I think it s a waste of money... all you re doing is shelling out money to them. A final difference between the groups involved a perceived relationship between CAM and allopathic medicine. CAM-users appeared to envisage the possibility of some integration between disciplines, albeit with CAM in a subsidiary role. I d never go to a naturopath on their own, I think they can work together with the oncologist, that s the ideal. A [doctor] friend... recommended [the naturopath].... He said give her a try and see how you go, which I did. Nonusers, however, implied that using CAM represented a challenge or affront to medical wisdom, negatively assessing this, and surmising that their doctors would perceive it similarly.
7 64 I don t know whether I d like to really try anything else. I m under doctor, and I wouldn t go against him sort of thing,... [Using CAM] makes me doctors look a bit of a joke,... they would never suggest it because, I shouldn t think they would because they d be dead against it probably. DISCUSSION In this study, CAM users and nonusers presented many different expectations and judgments of CAM and CAM users. Both groups appeared to consider that any benefits to be obtained from CAM required a belief in their efficacy, although nonusers claimed not to have this belief. This shared understanding draws upon a mind body discourse dominant within Western societies, wherein the mind is presumed able to will a change in the course of the disease in the body. 57 Featuring in medical and lay accounts of illness, this discourse also constitutes the individual as responsible for their health, implicitly holding patients responsible for poor outcomes following treatment. 31,58 Although this moral evaluation attaches to conventional medical treatments, it may be more salient for CAM which not only presuppose and espouse a mindbody connection but also define it as the foundation of any effect, and particularly for those CAM that have not been shown to have a definable physiologic mechanism, and thus may be more readily understood as dependent upon a belief or mind-body connection. In this context, some patients lack of faith in the efficacy of CAM, precisely where faith is believed crucial to its success, may account for their dismissal of CAM s relevance to their circumstances. Although scientific research demonstrating physiological effects of some CAM practices may work to challenge the notion that CAM efficacy is inseparably dependent upon patient belief, this study suggests that further understanding and discussion of the social and moral aspects of patients decisions to undertake CAM treatments is required in order to increase patients receptivity to CAM practices that may positively affect their quality of life even when approaching death. As reported elsewhere, 8,13,47,50 CAM users valued CAM for perceived physical, psychological, philosophical, and social gains. For some, decisions regarding CAM use were influenced by the positive or negative appraisal of others. Although CAM uptake is often deemed to reflect a Western societal emphasis on individual responsibility for health, 4,17,31,54 this research supports the findings of others that decisions ELIOTT ET AL. about treatment including both conventional, 59,60 and alternative treatments 7,51 53 are influenced by family members. If desired outcomes are absent or treatment difficult to sustain, this may have negative ramifications, particularly with regard to relationships between patients and others contributing to the decision making. 53 It is also disturbing that some CAM users attributed cessation of CAM to some lack in themselves, holding themselves morally deficient, even as they alluded to financial or practical obstacles many such therapies require significant outlay of time, energy, or money, 12,14 all of which may be limited in terminally ill patients. Ensuring medical guidance regarding the availability and suitability of CAM may reduce patients reliance upon the opinions of others who, while intimately concerned with patient well-being, may lack knowledge of what might be clinically useful. Money was seen as a barrier to use of CAM by both users and nonusers, concurring with observations that financial considerations might limit the uptake of potentially useful CAM therapies. 54 However, the conclusions drawn by participants regarding financial outlay were dependent upon the perceived value of CAM itself, indicating that, although cost was important, patients expectations and evaluation of CAM determined whether cost was worth it. In turn, this was associated for nonusers with negative moral judgments of CAM use and users, and, by implication, of CAM providers. This perception is not confined to this population, as some within the Australian medical profession have characterized some CAM providers as fraudulently exploiting those with incurable or fatal disease who... suspend their normal commonsense judgment because of the desperate situation in which they find themselves, 37 and some suburbanite Australians characterized some CAM providers as exploiting desperately ill persons. 50 In part, nonusers dismissal of CAM en masse may stem from an identification of CAM as a homogenous group, rather than as specific and different practices and products, some of which may be helpful in palliative care, improving symptom control and patient quality of life. Determining what patients identify as CAM practices and their perceptions toward these might encourage dialogue about CAM, and increase patient receptivity to beneficial CAM treatments. It has been noted that CAM use is correlated with distrust in science and technology. 17 This study suggests that this link may prompt individuals (not wishing to be seen to spurn medical efforts) to reject use of CAM. Similarly, although doctors may be less likely to recommend CAM when unfamiliar, 36 these