Exclusive Use of Alternative Medicine as a Positive Choice

Multiple sclerosis (MS) is an autoimmune disease of unknown etiology, characterized by axonal degeneration, chronic inflammation, and loss of the myelin sheath surrounding nerve fibers in the brain and spinal cord. Medical treatment can halt the progress of the disease in some cases, and a number of complications can be treated medically; in general, however, symptom treatment is only partially effective and may result in a number of adverse effects.¹

Today, many people with MS, as well as those with other chronic diseases, use complementary and alternative medicine (CAM) treatments in the management of their disease.^2–4 Most studies show a prevalence of CAM use among people with MS of 50% to 70%.^2–4 Studies indicate that people with MS use CAM treatments for specific as well as nonspecific purposes.³

Typically, people with MS who use CAM combine it with conventional medicine, but some choose to forgo conventional treatments and use CAM exclusively. The reported prevalence of exclusive CAM use among people with MS ranges from 10% to 30%, depending on the definition of “exclusive” (eg, whether disease-modifying drugs [DMDs] for MS are included).^{5 6}

Little is known about people with MS who use CAM exclusively. A few studies have investigated nonadherence to DMDs among people with MS, emphasizing barriers such as forgetfulness, depression, and injection-site reactions,^{7 8} and Shinto et al.⁹ showed that “not using disease-modifying treatments” was an independent factor positively associated with CAM use; however, these studies have not explored possible motives related to the nonadherence. A study by Astin¹⁰ showed that among individuals in the general US population, those who relied primarily on alternative forms of health care had a different profile than those who used alternative medicine in conjunction with conventional treatments. Primary reliance on alternative forms of medicine was predicted by a desire for control over health matters as well as by a belief in the importance and value of one's inner life and experiences.¹⁰ Recent studies involving cancer patients have indicated that active decision-making and a feeling of personal control are important factors in the choice to use CAM as an alternative to conventional treatment.^{11 12} In these studies, such a choice is not due primarily to dissatisfaction with conventional medicine, but rather to a congruence between alternative health-care philosophies and the users' personal values, beliefs, and philosophical orientations toward health and life.^10–12

The purpose of the present study was to explore exclusive CAM users' values, beliefs, and philosophical orientations, with the aim of obtaining insight into their considerations when choosing to forgo conventional treatments for their MS.

Methods

Research Approach

This study was based on a phenomenological approach, exploring how a specific group of patients make sense of their experiences and the meaning they give to experiences within a certain context. The overall aim was to gain an insider's perspective on how different MS treatments are chosen or not chosen for use by study participants.^{13 14}

Various conceptual frameworks have been developed in recent years to help elucidate patients' experiences with CAM treatments.^15–17 Our analytical approach was based on the assumption that specific aspects of CAM use—for example, exclusive CAM use—are connected to patients' general assumptions about how different treatments work. Such assumptions have been previously investigated through a program theoretical approach.^{15 18–20} Program theory was originally developed within the social policy field as a tool to research and evaluate social policies and programs. In recent years, it has also been used within health-care research as a tool to facilitate the articulation of people's basic assumptions on how a given intervention leads to a given outcome. For example, it has been applied within research in integrative MS treatment as a tool to explore differences and similarities in treatment assumptions between conventional health-care providers and CAM practitioners.^{18 19}

Within program theory, outcome is conceptualized as being linked to both treatment mechanisms and treatment contexts.¹⁵ “Treatment mechanisms” are defined by Launsø and Skovgaard¹⁸ and by Paterson et al.¹⁵ as the processes through which the treatment interventions are assumed to lead to an outcome. “Treatment contexts” are defined as the circumstances within which the intervention and the treatment process take place—for example, economic, social, cultural, and political factors.^{15 18} In this study, we chose to focus on treatment assumptions as encompassing treatment mechanisms as well as treatment contexts, as we wanted to explore participants' overall assumptions regarding the processes that characterize the generation of outcomes in a given course of treatment.

In this study, we used program theory as a tool to explore participants' assumptions about how conventional as well as CAM treatments work by applying it as a conceptual framework in the interviews. Thus, we aimed to explore participants' treatment assumptions by focusing on their experiences with different types of treatments as well as their beliefs on how the treatments used led to the outcomes experienced.

Design and Participants

This study is part of a larger sequential mixed methods study,²¹ including questionnaires as well as qualitative interviews. The mixed methods study was designed to collect information about the prevalence of use of various CAM and conventional modalities among members of the Danish MS Society and to achieve a deeper understanding of motives and reflections underlying the use of these treatments. The survey involved 3350 randomly selected members of the Danish MS Society. The response rate was 55.7%, and the response group was generally representative of the sample, although respondents aged 40 to 60 years were slightly overrepresented.²² In the survey, all respondents were asked if they would be willing to participate in an interview.

The overall mixed methods study was designed so that results of the survey could be used to inform and qualify the design of qualitative studies. Hence, the present study is a subsequent post hoc analysis of a specific subgroup that emerged from the survey. Results from the survey (N = 1865) showed that 51.8% of the respondents (n = 967) had used CAM within the past 12 months, and that 9.7% of the CAM users (n = 94) had used no conventional treatments during that period (besides DMDs).²³ Among these 9.7%, a minor proportion (n = 24) had also chosen to forgo DMDs for MS.²⁴ Of these 24 survey respondents, 7 did not respond to the invitation to participate in an interview study and could not be contacted owing to rules regarding data privacy. Interviews were therefore conducted with 17 participants.

The 7 nonparticipants did not differ considerably from the 17 participants regarding gender, age, or types of CAM treatments used. Among the nonparticipants, one out of the seven was male, and the mean age was 46.7 years. Among the participants, 2 out of 17 were male, and the mean age was 49.8 years. Among nonparticipants as well as participants, the most commonly used CAM interventions were vitamin and mineral supplements, oil supplements, special diet, herbal medicine, acupuncture, reflexology, and yoga. A broad range of CAM interventions were used by nonparticipants as well as participants.

In Denmark, only biomedical research projects are required to be approved by a health research ethics committee. This study was registered with the Danish Data Protection Agency. Written consent for participation was obtained from all study participants.

Data Collection and Analysis

Semistructured in-depth qualitative interviews were conducted. Each participant was interviewed once by telephone. As previously mentioned, the conceptual framework of the interviews was based on a program theoretical approach, meaning that the main goal was to gain insight into participants' treatment assumptions by exploring their experiences with different types of treatments and their beliefs about how the treatments used led to the outcomes experienced. Participants were asked to describe in broad terms how they had experienced the impact of various factors, interventions, and treatments on their health, and to identify which elements they assumed had played the greatest roles in the outcomes. The interviews were open-ended, giving participants substantial freedom in their responses. However, the minimal structure that was imposed ensured inclusion of the same range of topics in each interview.

The interviews ranged from 35 to 65 minutes long. They were audiorecorded and subsequently written up as in-depth summaries. Themes were extracted from the material through meaning condensation.²⁵ First, each interview summary was read through in order to get a sense of the whole individual interview as well as the entire set of interviews. Then, meaning units as expressed by the participants were determined and organized into overall themes. Finally, themes were identified on the basis of the entire interview study.²⁵ Illustrative quotations were extracted from the audiorecordings. The participants were guaranteed anonymity.

Results

The results of the meaning condensation analysis suggested that four themes characterized the participants' treatment assumptions: 1) conventional medicine contains chemical substances that affect the body in negative ways; 2) CAM treatments can strengthen the organism and make it more capable of resisting the impact of MS; 3) the patient's active participation is an important component of the healing process; and 4) bodily sensations can be used to guide treatment selection.

Chemical Substances in Conventional Medicine: “I am suspicious of medicine and its effect on the body”

Several of the participants expressed a conviction that chemical substances used in conventional medicine affect the body in negative ways. The emphasis was not primarily on harmful side effects of conventional medicine, but rather on the artificial nature of the substances used. As one 47-year-old woman put it, “I would prefer that the body could take care of itself. I'm not crazy about taking pills. . . . Normal medicine is a chemical thing. I don't like the thought of, sort of forcing something on the body. The body should be helped, but not forced. I would like to strengthen the body in a more natural way. Help it along, so to speak.” A 50-year-old woman noted, “I prefer to not take any medicine. Generally I don't like any medicine that increases or decreases something inside the body, in an artificial way. I like to be able to feel what my body needs. I can't do that when I take chemical medicine, so I don't.” Several participants explained that the uncertainty regarding the impact of conventional medicine was included in an overall assessment of its advantages and disadvantages. As one 59-year-old man put it, “I am suspicious of medicine and its effect on the body. I think, frequently, it does more harm than good. I prefer to simply avoid it. If I am going to ruin my liver, I prefer to do it with red wine.” In the words of another 47-year-old man, “I don't take conventional medicine, because in my experience, the organism does not respond to it in a positive way.”

Some participants mentioned the lack of scientific knowledge regarding the overall and long-term impact of conventional medicine as a major reason for avoiding it. One 47-year-old man stated, “I prefer to avoid medication. That's my personal view. . . . Conventional medicine has very isolated targets. It can have an isolated, localized effect. But I don't think enough research has been done on the other ways in which medicine affects the body.” A 51-year-old woman said, “I am afraid to risk damaging my body permanently or creating imbalances within it as a result of an unknown effect of a chemical drug. Nobody knows exactly what it does to the body over the long term, in 10 years, for example.”

Overall, the belief that conventional medicine relies on chemical substances that affect the body in negative ways was prevalent among the participants. The emphasis was on the risk of disturbing natural bodily processes by introducing unnatural substances rather than on a desire to avoid side effects. This indicates a preoccupation with the idea of sustainability, as illustrated further by the following three themes.

CAM Treatments as a Tool to Strengthen: “The body likes it”

The belief that CAM treatments can be used as a tool to strengthen the organism was expressed at several different levels and from different perspectives. Some participants referred to a feeling of strengthening the body physically—for example, through diet and dietary supplements. In the words of a 47-year-old woman, “I think it [supplements and craniosacral therapy] is really effective. I feel that I am doing something good for myself if I eat healthy and take some good supplements. I'm strengthening my body and doing it a favor. It feels good.” A 59-year-old man stated, “I am not exactly sure what happens. But something happens, something is built up. I feel that a healthy body is sturdier than a body that is full of stuff that weighs it down, like bad diet and medicine.”

Several participants saw ongoing personal assessment as an important strategy in choosing specific CAM modalities. Besides the physical strengthening, CAM was also seen as a tool to achieve a feeling of calmness and balance in the body. As a 47-year-old woman put it, “It [craniosacral therapy] gives me tranquility, it's very pleasant. The body likes it. It, sort of, calms down. That's the only way I can explain it.” Another 50-year-old woman expressed, “I've noticed that it's strengthened the body, and raised my well-being and my energy. The body is brought into balance, and thus strengthened—when you feel that everything is consistent again. I have this image, where I see myself as a puzzle. When you feel balanced, all the pieces fit. And I've experienced that, for instance, acupuncture or healing have aligned the pieces and clearly revealed the motive. And that is the exact opposite of the sclerosis.”

The two participants quoted above mentioned the feeling of something in their body, a wholeness, “falling into place.” They stressed that this didn't happen right away, but that it was a gradual process. Several participants stressed the importance of viewing the strengthening of the body through use of CAM from a process-oriented perspective. One 47-year-old woman stated, “Alternative treatments take more time. I think they work in a different way . . . strengthening the body and initiating something in a way that requires the body to do something as well.” A 59-year-old man commented, “No pain, no gain. I notice that with exercise and some forms of alternative treatments. There is sort of a setting in motion of something.”

The process-oriented perspective was linked by some participants to a type of “bodily learning”—becoming aware of bodily signals and patterns. Some participants identified this as an important outcome in the ongoing process of using CAM. One 47-year-old man explained, “I don't think there is a magical treatment—something that can instantly heal you. But I do believe that you can learn to feel and notice your own patterns. It's a process. A process you have to lead yourself. I have to be my own expert. I do research on myself, so to speak. . . . Through the alternative treatments I use [vitamin and mineral supplements, oil supplements, homeopathy, acupuncture, healing, meditation], I notice that I become better at handling stress, my awareness of my body improves . . . and I become better at finding balance while stressed. If your body patterns reinforce stress, you have to learn to handle it. Recognizing your body patterns is essential.”

Overall, CAM was seen by the participants as capable of strengthening the body in several ways, both physically and mentally. The participants emphasized the importance of using specific CAM treatments as part of an overall health strategy, focusing on a dynamic interaction between various aspects of human health.

The Patient's Active Participation: “I am the captain”

One of the themes most consistently articulated by the respondents was the importance of personal, active participation in the healing process, which was related to a feeling of control. In particular, exercise and diet were mentioned as tools for gaining control of the disease, and the idea of “doing something myself” was a consistent theme in the interviews. One 53-year-old woman explained, “Diet and exercise are things that I control. I am the master of them. I take part in the handling of my situation and my disease. That feels good. Being an active participant gives a sense of security and control in the development of the disease. . . . And it means a lot to be able to make a difference. That way I am sort of better able to be in my own company. To just take a lot of medicine is sort of too easy. To just numb it.” Another 47-year-old woman said, “First off, I feel that 100 percent of the responsibility is mine. I am the only one that can affect it in any way. I have to make sure that I exercise, and that I eat a healthy diet. At the same time, it has to be a normal life. But I am the captain. I can't put that on anyone else—including my doctor.”

As indicated by the two quotations above, the idea of responsibility was closely connected to personal participation. The act of taking responsibility for improving one's situation was mentioned as being closely related to the choice to use CAM treatments. Several participants explained the importance to them of taking an active role in their treatment, as emphasized in many CAM philosophies, as opposed to the more passive role of the patient in conventional medical treatment. As one 38-year-old woman explained, “You also run the risk of growing lazy, when you just take medicine. That way you don't have to give any additional effort, but just sit back.” A 59-year-old man commented, “I think that your own effort makes a big difference. I think that the body is ready to reveal ailments if we don't take care of it. But it can be hard to take responsibility—it's easier to just take a pill and then sit back.”

As shown in the quotations above, some participants believed that conventional medical treatment was simply “too easy a way.” The act of engaging positively in one's course of disease and treatment was seen by some as a personal journey, a process of learning and exploration. A 47-year-old man explained, “It's a kind of journey. An expedition into yourself. You inspect yourself more deeply, and may notice changeable habits. . . . It's a journey to get to know your disease, but I continue that journey on my own. . . . It's a fascinating journey. And a long one.”

Generally, the respondents wanted to be active participants in their course of treatment. Thus, treatment modalities that supported personal, active engagement were perceived as more valuable than those that positioned the patient as a passive recipient.

The Use of Bodily Sensation: “I am constantly listening to my body”

Bodily sensation was seen as important in the ongoing assessment and structuring of CAM treatments. One 48-year-old woman stated, “I prefer to be able to sense what is going on in my body. I don't want medicine that inhibits the body's signals. I need those signals to act upon, so I can't have them too clouded. I invest a lot of energy in assessing whether a treatment is good for my body or not—both when it comes to conventional medicine, which I have used periodically, and when it comes to alternative treatments. I usually find that the alternative treatments benefit me the most, and stress my body the least.” Another 47-year-old woman explained, “You have to respect it when the body tells you to stop. Listening and reacting to what the body tells you. That's something you have to get used to. You need practice.” In the words of a 50-year-old woman, “I am not being sanctimonious, but I need to be able to sense my body to be able to live with it. . . . I've met quite a few fanatics in the realm of the alternative, and that is not at all the route I want to go. I just want my body to come along.”

The use of CAM was perceived as being different from the use of conventional medicine in not suppressing signals from the body. Several participants stressed the importance of using personal, bodily experiences to guide disease management. Daily dietary experiences were highlighted as especially important. One 59-year-old man explained, “Christmas is like hell to me . . . the food completely breaks down my organism. I know several people who feel that way. Particularly with regard to sugar. Eating greens has never been cool, but it sure helps me. And when I bring my own vegetables, people just look at me and smile. I'll leave that to them—I know that it's making a huge difference for me. I've noticed this countless times.”

Some participants explained that an individual perspective was important to them when assessing the value of specific interventions or health advice. As a 48-year-old woman described, “I am constantly listening to my body—what it can do and what it can't. For example, I do really well in the heat. But not everybody does.” A 47-year-old man related, “I've noticed in my own body that it reacts to too much red wine and beef. . . . The timing of meals is important too. To me, at least. I've realized that I function best with many small meals.” Another 59-year-old man noted, “My dad smoked for 60 years and it didn't affect his health. But you have to assess what you can handle. I can't handle smoking, or eating sugar, or drinking red wine. That's just the way it is. But that's not necessarily how it is for everyone.”

Individual experience was regarded by some as more important than scientific evidence. As one 59-year-old man explained, “I don't need the scientific research. I rely on how I feel and on my sensations. The first-hand experience of the individual is central to me. The research doesn't say anything about the individual. . . . A proper gentleman's lunch, and then I'm seeing double the next day. Now that's evidence.” A 51-year-old woman commented, “Just as with conventional treatments, there are many different documented results, but the research was performed on completely different bodies, with completely different compositions—so to me it will always be an individual gamble, and that's when you have to evaluate your feelings, and contribute to finding what's best and most right for you.”

This individual, personal knowledge was identified as an important element in the ongoing assessment of which treatments to use. A 53-year-old woman stated, “I stopped taking my medicine a few years ago. I didn't think it had the promised effect. It's always a balancing act, and I don't think you should use medicine just to use it.” A 42-year-old man expressed, “I would consider taking medicine, if I thought that it was the best solution overall. I am not a fanatic. So far I haven't felt that it was worth it.” And a 48-year-old woman explained, “I won't rule out entering medical treatment if my symptoms get worse down the line. But right now it's not worth it. That's my overall assessment.” These three quotations illustrate that participants' choice to use CAM exclusively can be based on an overall assessment of the perceived positive and negative impacts of different types of treatments.

Overall, the participants expressed a belief in an essential difference between conventional medicine and CAM regarding their impact on the organism. They also viewed personal, bodily experiences as valuable in guiding disease management. This knowledge gained from individual experience was viewed as even more important than available scientific evidence in the choice of treatment modalities for their disease.

Discussion

The results of this study indicate that the participants saw their choice to use CAM exclusively, forgoing conventional treatments, in the light of their convictions about the way different types of treatment work. Although an attitude of skepticism toward pharmacology was prevalent among participants, the exclusive use of CAM was not so much a rejection of conventional medicine as a positive embracing of CAM resulting from an overall assessment of the perceived advantages and disadvantages of CAM and conventional medicine. This positive choice of CAM related to the idea of sustainability in health care and health enhancement, as well as a belief in the value of paying attention to personal, bodily sensations as a source of self-knowledge that can guide treatment-related decisions.

Sustainability in Health Care

The skepticism found in this study toward the pharmacologic aspect of conventional medicine was based mainly on the belief that chemical substances have a negative overall impact on the organism. Studies among cancer patients^{11 26 27} have shown that concerns about side effects of conventional treatment and a fear of harming or damaging the body enter into some patients' decision to forgo some or all conventional cancer treatments. Among participants in the present study, this desire to avoid harming or damaging the body through the use of drugs was linked to an overall belief that such interventions are unsustainable. In the respondents' view, conventional medications have de-strengthening, de-balancing, and signal-blurring (meaning disturbing signals from the body) effects. On the other hand, CAM treatments were seen as a way of strengthening the whole organism as well as facilitating the use of bodily sensations to guide disease management. These perceived differences between conventional medicine and CAM point to the need for further research on motives for CAM use related to the way different types of treatments are regarded to affect the “inner environment” of the organism.

CAM and Health Enhancement

Studies involving cancer patients have indicated that the choice to forgo conventional treatment does not necessarily indicate distrust of the medical system, but rather may reflect a variety of personal factors, including patients' need for decision-making control.^{11 26} The results of the present study support those findings, suggesting that exclusive CAM use is a positive choice reflecting the patient's assumptions regarding treatment. A British study of patient noncompliance in general emphasized that what may seem like an irrational act from a physician's point of view may be a rational choice when viewed from the patient's perspective, taking into account the patient's assumptions regarding treatment as well as his or her personal and social circumstances.²⁸ This observation is strongly supported by the results of the present study, which indicate that the choice of exclusive CAM use may reflect a focus on enhancing overall health rather than eliminating specific symptoms. The popularity of CAM could thus be viewed as reflecting a general trend among health-care consumers toward health optimization and performance enhancement, as recently suggested by Pedersen.²⁹

Bodily Knowledge

In the present study, participants emphasized the importance of actively undertaking preventative, strengthening, and health-promoting initiatives. Part of this focus on “personal health enhancement” was a high value placed on personal, bodily experiences as a source of self-knowledge. Participants considered such “embodied knowledge” to be a crucial factor in their overall assessment of treatment options.

This attitude has been found by various CAM researchers to be consistent with a health strategy emphasizing personal control over one's health status.^{30 31} Knowledge gained through paying attention to one's own bodily experiences helps the patient take responsibility for his or her health and navigate among different treatment options.^{17 32}

Different Types of Evidence

In emphasizing the importance of personal, bodily experiences, the participants in this study demonstrated a highly individualized approach to the concept of evidence. They assigned a high epistemological value to such experiences, in many cases giving them greater weight than traditional scientific evidence.

Such reliance on experience-based evidence has been subject to widespread criticism, due largely to its lack of a scientific basis and hence the potential risk of damage to the body.³³ Saks³⁴ has argued that while the randomized controlled trial (RCT) is the gold standard within research in both conventional medicine and CAM, the results of individually targeted qualitative research often seem to be more relevant to patients. Barry³⁵ has emphasized that the widespread use of RCTs entails a number of methodological challenges, which are also debated among patients. Such debates might lead to the questioning of the universal applicability of conventional medico-scientific knowledge.³⁶ The results of the current study indicate that experience-based evidence plays an important role in participants' overall approach to treatment. Another study among members of the Danish MS Society, investigating views on risks of negative interactions between herbal medicine and conventional drug therapies, indicated that bodily sensations are assigned high epistemological value in risk assessment.³⁷

Study Limitations

One limitation of this study was that 7 of the 24 participants in the predefined study group did not complete interviews. It cannot be ruled out that their participation might have resulted in the emergence of additional themes or that a larger sample might have yielded additional perspectives on the themes addressed. However, the 7 nonparticipants did not differ considerably from the 17 participants in terms of gender, age, and types of CAM treatments used.

The use of semistructuring for the interviews ensured the inclusion of participants' reflections on specific, selected issues. At the same time, however, it may have limited the breadth of the interviews and restricted the types of experiences articulated by the participants.

Conclusion

The participants in this study emphasized their choice of exclusive CAM use as resulting from an overall assessment of the positive and negative effects of different types of treatments, taking into account their own beliefs and experiences. Although many participants were skeptical about the pharmacologic aspect of conventional medicine, the decision to use CAM exclusively seemed to reflect an embracing of CAM rather than a rejection of conventional medicine. This overall finding supports previous studies involving similar patient groups that portrayed the decision to forgo conventional medicine as the result of a variety of personal factors and not necessarily an indicator of distrust of the medical system. Theories on modern health-care consumer culture strengthen this thesis, suggesting that the use of CAM is often embedded in an overall health strategy that encompasses a variety of treatment approaches.

Although they constitute a minority among people with MS, exclusive CAM users offer perspectives that are important to consider with regard to conventional versus alternative medicine as well as general interpretations of health and disease. Health-care practitioners, patient organizations, and health authorities should be aware not only of the potential risks associated with the choice to forgo conventional treatments, but also of possible changes in general attitudes toward conventional treatment interventions.

PracticePoints

Although most people with MS who use complementary and alternative medicine (CAM) also make use of conventional treatments, some use CAM exclusively.

Exclusive use of CAM is often a positive choice, rather than a result of rejecting conventional medicine.

It is important for clinicians treating people with MS to communicate with their patients about CAM use and be aware of possible changes in patients' attitudes toward both CAM and conventional medicine.