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Older patients are more likely than ever to be under the care of both physicians and complementary and alternative medicine (CAM) practitioners, yet there is little research on older patients’ experience of these different relationships. This article addresses older breast cancer patients’ seeking of concurrent care and examines patients’ understandings of interactions with physicians and CAM practitioners. This is a qualitative study of a random, population-based sample of 44 older women with breast cancer who are simultaneously under the care of at least 1 physician and 1 CAM practitioner.
It is estimated that approximately 40% of Americans use complementary and alternative medicine (CAM) each year1-4 and that the number of consultations with CAM practitioners is higher than those with physicians.5 Despite much research on CAM use generally, however, there is very little information on the use of CAM among older adults.6 Depending on the breadth of the definition and the clinical characteristics of the populations studied, estimates of CAM use among older people range from 11% to 80%.7 Although researchers do not agree on the precise rates of use, it is clear that a significant proportion of older people worldwide are actively engaged in the use of CAM. In the medically pluralistic society of the contemporary United States, this means that older patients are more likely than ever to be under the care of both physicians and CAM practitioners.8,9
Growing interest in the use of CAM for chronic conditions,10,11 coupled with the predicted expansion of the aged population over the next decades (with its high prevalence of comorbidities), will likely result in a rise in the number of patients concomitantly visiting physicians and CAM practitioners.12-14 The focus on the individual, the notion of personal responsibility for health care, new forms of spirituality, relatively high levels of education, and increasing cultural and ethnic diversity provide for a growing acceptance of medical pluralism.15 Given the twin facts of the high cost of providing health care to older patients and the difficulty of offering comprehensive health care that incorporates physical, social, and emotional well-being,16,17 it has been suggested that CAM can serve an important role as an adjunct to biomedicine in enhancing quality of life in the aging population.7,18
Despite acknowledgment of demographic trends, however, there are very few studies dealing with the use of CAM by older patients or with the impact of changing configurations of therapeutic relationships on older patients’ experience of health care. The little research that has been conducted on CAM use among older people has rarely addressed their experience of CAM use or the effect of CAM on their understandings of and reactions to their relationships with physicians and CAM practitioners. Both the lack of critical gerontological perspectives within CAM research and the paucity of qualitative studies of older people and CAM use are particularly striking.7,19 Qualitative research methodologies can provide unique understandings of people's subjective experiences of growing older as well as their views of how aging affects their encounters with CAM practitioners and physicians.20
In one of the few qualitative studies of older patients and CAM use, Cartwright17 conducted semistructured interviews with 17 older patients who regularly attended a low-cost complementary health care center in London. Participants expressed the desire to “get on with life” and maintain physical and social functioning within the constraints imposed by chronic conditions. The “sense of control” that the use of CAM engendered as well as the notion of “whole package care” contributed to participants’ perception of CAM as an important adjunct to biomedicine. Andrews21 interviewed 20 older users of CAM in southern England as part of a larger survey. He found that older patients were highly satisfied with and felt empowered by CAM treatments. Similarly, in a study of health beliefs in 15 older people, Conway and Hockey22 found that participants who reported using homeopathy contrasted the empowering experience of CAM with the paternalistic and patronizing experiences of biomedicine. In interviews with 77 older adults, Kelner and Wellman23 showed that patients choose specific kinds of practitioners for particular problems, and some engage with a mixture of practitioners to treat a specific complaint. Patients’ choice of type of practitioner(s) was multidimensional and could not solely be explained by either “disenchantment with medicine” or an “alternative ideology.” The CAM users valued the egalitarian nature of the therapeutic relationship and expected to take an active role in their health care, preferring to take personal responsibility for maintaining their health through exercise and diet. Few older adults sought care from CAM practitioners, and those who did began their search for care with physicians. Together, these qualitative studies of older patients’ use of CAM challenge traditional views of the elderly as passive recipients of health care and suggest that the opportunity to engage actively in health care decisions has an adaptive and valued function.17,24
Our review of the literature shows that there is a lack of research into the experience of CAM use among older people, particularly as it relates to communication with practitioners. Using a qualitative approach, our study explores the experiences of older women with breast cancer who are simultaneously under the care of at least 1 physician and 1 CAM practitioner. The 2 aims of the current study were (a) to investigate the health beliefs and healing strategies involved in older breast cancer patients’ seeking care concurrently from physicians and CAM practitioners and (b) to examine older breast cancer patients’ understandings of and reactions to their relationships with physicians and CAM practitioners.
We conducted a 4-year qualitative study to describe and examine the ways in which health care relationships are approached and understood by older breast cancer patients, their physicians, and their CAM practitioners. Data presented here are from interviews with older women who had been diagnosed with breast cancer; 40 physicians and 40 CAM practitioners were also enrolled (data presented elsewhere) to study communication among triads of patients and their health care providers.
The patient sample consisted of 44 women who were randomly selected from a population-based case listing developed by the Northern California Cancer Center (a nonprofit corporation that holds contracts with the State of California to operate the California Cancer Registries covering several counties). Participant eligibility was based on a histological diagnosis of breast cancer in the previous 5 years, age (55-84), race/ethnicity (African American, Chinese American, European American, or Latina/Hispanic American), language (English speaking), and geographic location (diagnosed at a hospital within San Francisco County). Additional selection criteria included ongoing use of CAM (as defined by the National Center for Complementary and Alternative Medicine) and willingness to provide the names of the physician and CAM practitioner with whom the patient felt she had the closest ongoing relationship and whom she had visited at least twice in the previous year. Exclusion criteria included any woman whose physician stated that there were medical contraindications to her participation. Potential study participants were sent a recruitment letter, which was followed (1 week later) by a telephone call to determine interest and eligibility. The research protocol was approved by the University of California, San Francisco, Human Research Protection Program.
Two 60 to 90-minute, tape-recorded interviews were conducted at participants’ homes or at other convenient locations of their choosing. The semistructured interview guide included the following topic domains: conceptualizations of health and illness, conceptualizations of aging, current treatments and health practices, relationships and communication with physicians and CAM practitioners, comparisons of biomedical and CAM systems, and characteristics of high-quality health care. A structured sociodemographic questionnaire was administered at the end of the first qualitative interview. Participants were paid $30 at the close of each of the 2 interview sessions.
Data analysis proceeded concurrently with data collection using established methods of qualitative text-based content analysis. All text data were coded by at least 2 investigators and a research assistant. Periodic checks were made to ensure that interrater reliability remained above .85. Qualitative content analysis was facilitated by the use of QSR NVivo software. Marker codes25 were developed to describe the participants’ reported comorbid conditions and features of their use of CAM (eg, types of CAM used, reasons for use, and duration of relationship with practitioner). Thematic codes26 were developed to indicate participants’ attitudes toward their age and aging in the context of health and both biomedical and CAM health care, their perceptions of their health care choices and health care relationships, and the types of communication (both desired and actual) that the patient participants described having with their physicians and CAM practitioners.
Of the 1593 breast cancer case listings provided by the Northern California Cancer Center, we randomly selected 655 women who were eligible to receive a recruitment letter. (Ineligibility was a result of language, ethnicity, and/or medical contraindications.) In all, 602 women were screened by telephone: 45 were eligible, and 44 enrolled (ie, 1 refused). Women found to be ineligible on screening did not have a regular CAM practitioner (29%), were not able to be interviewed in English (13%), did not have a regular physician (4%), were too ill (3%), or were deceased (3%). (Women who were not telephone screened had been listed with inaccurate contact information or were unreachable for unknown reasons.)
Table 1 displays the demographic and clinical characteristics of the 44 study participants. After consent to participate, there were no significant differences in demographic or clinical characteristics between study participants and the larger set of cases from which they were randomly selected. The average age of participants was 62 years. Participants were interviewed an average of 5 years after their initial breast cancer diagnosis. The majority of study participants had been using CAM for more than 5 years. Participants’ reasons for using CAM included back pain (19 participants), other joint pain (9), cancer (5), stress (5), and “tune-up”/energy (4). For all but 4 women, a diagnosis of breast cancer was not the catalyst for CAM use. For those 4 participants, CAM treatment was sought to address the side effects of treatment, not to treat the cancer itself. Comorbid conditions were reported by 75% of the participants. The specialties of the physicians with whom the patients felt they had the best relationship included: internal medicine (27), oncology (5), surgery (4), family medicine (2), and rheumatology (2). The modalities represented by the CAM practitioners were traditional Chinese medicine (16), chiropractic (11), bodywork (11), yoga/meditation (1), and osteopathy/craniosacral therapy (1).
Four interrelated themes pertaining to views of the self and of aging were predominant in the participants’ narratives. These themes reflect participants’ feelings about their own age, their views of aging effects, embracing the ideal of “active aging,” and their experiences with health care–related ageism.
Almost half of the participants (20) spontaneously stated that they did not look or feel their age or did not feel old, and the women who expressed this view reflected the study's age distribution:
When people say, “You can't be 73. Oh, you're not 73.” I say “Well, I am.” So perhaps I fool them when I walk in. They don't associate me with being an old lady. (73 years old)
Even though chronologically I'll be 81 in September, I feel young. (80 years old)
The women did not see themselves as “old,” emphasizing instead their continuity of identity, despite the physical changes associated with aging.
Although all the study participants had been diagnosed and treated for breast cancer within the previous 5 years, and 75% reported comorbidities, only 2 women believed that aging is inevitably associated with illness. The consequences of aging were viewed rather as age-related limitations or as physical restrictions that threatened autonomy:
I know with age, you're limited. And I kind of got used to that with the knee problem. There were just some things I couldn't do. And I think seniors just get used to that. They have less endurance because of aches and pains. (64 years old)
Although participants were well aware of societal stereotypes, they did not view aging, per se, as a “condition” requiring medical management.
Most participants emphasized the importance of staying active as they aged. Activity was variously defined as working (for pay), maintaining a social life, exercising regularly, or simply “keeping busy.” Women viewed remaining active as an essential part of successful aging because maintaining an ideal activity level was integral to their sense of “not feeling old.” Activity and life involvement were described as necessary for maintaining autonomy as well as for preserving personal characteristics associated with youthfulness:
I know that my body has different limitations and different requirements at this point. . . . Rain or shine, I go outside and do these exercises—stretching and all this. And I know that I need to provide a little more stimulation to stay supple, to stay flexible. (63 years old)
I have a hard time thinking of myself as being old. I think if you're interested in everything and busy, then you don't have time—you don't think of yourself as being “an age.” (75 years old)
Participants expressed discomfort with their physicians’ age-based perceptions of them. In a narrative that is representative of the women's concerns regarding ageism, 1 participant asked her physician how long she would need to use a cane after a pelvic fracture:
He said to me, “Don't worry about that. A lot of people your age, something happens like this, and they continue with a cane forever. Just accept it. You know, you're not as young as you used to be.” I could kick him right in the pants because that's one of his things: “You know, you're not as young as you used to be.” And I told him once, “You know, if I believed that, I'd have been dead 10 years ago.” (81 years old)
Physicians’ age-based stereotyping was noted by several participants. Some women attempted to counteract the perceived bias by trying to “not look one's age”—that is, by avoiding stereotypical “elderly” behavior. Others’ preconceived notions of old age were sometimes felt to require more management than aging itself:
I mean, I make sure not to go in and say, “I'm really arthritic and I'm old, give me a chair quickly” or anything like that [laughs]. (66 years old)
In discussing their communication with physicians, patients assessed their doctors’ interpersonal skills, addressed whether they had communicated about their CAM use, and although unprompted, consistently raised the issue of time constraints in the therapeutic relationship.
Only 1 of the 44 participants expressed dissatisfaction with her current physician. All the other women were satisfied with their doctors, describing them (in order of frequency) as good, excellent, friendly, respectful, nice, caring, cordial, professional, wonderful, empathetic, comfortable, pleasant, amiable, warm, trusting, concerned, and kind.
Approximately half of the participants (21) had told their physicians about their use of CAM. In a few instances, the physician had in fact recommended that the patient seek a complementary treatment. Those women who had not disclosed their CAM use explained that “it had not come up,” the physician had not asked, or that their decision to seek CAM was personal and was unrelated to their biomedical care. Concern that the physician would not approve of their CAM use was not offered as a reason for nondisclosure. Although the physicians of 3 participants who had mentioned their CAM use expressed reservations about the nonbiomedical therapies, their lack of enthusiasm did not discourage the women from continuing to visit their CAM providers.
Interviewer: Does Dr. _____ know about your use of the herbs and the supplements?
Participant: Yes. I think he thinks [laughs] it's kind of a bunch of baloney, but [laughs] he knows.
I: That was the next question—how does he feel about it?
P: [laughs] I'm not sure. He's probably the kind of doctor who says, “Take a Centrum Silver or something.” But I disagree with him, so that's fine. We just don't discuss it. I tell him what I take, and the list [laughs] goes on and on and on. And he writes it down dutifully. (66 years old)
Most participants spontaneously raised the issue of how busy their physicians were and how restricted they were in the amount of time they could spend with patients. None of these women blamed their doctors, emphasizing instead that they understood that short visits were not the physician's choice, but part of the reality of the current health care system:
He will stop and answer me if I have specific questions, but mostly—well, you know how doctors are—they're so busy nowadays. They just don't have time to really take time to talk to you. I know he tries, but he really doesn't have the time. (75 years old)
In discussing their relationships with CAM providers, participants assessed their practitioners’ interpersonal skills, described aspects of biomedical care discussed with CAM practitioners, and raised the issue of visit length.
Although there was overlap in the adjectives participants used to describe their CAM practitioners and their physicians (wonderful, warm, caring, concerned, friendly, empathetic, and kind), there was a much greater emphasis on the figure of a supportive and compassionate healer in the descriptions of the CAM practitioners. Women described their relationships with their CAM practitioners in terms of professional roles, but one fourth of them used “friend” as an analogy, whereas none described their physicians using this term.
Most of the participants (40/44) freely discussed their diagnoses and biomedical treatments with their CAM practitioners and felt that these health care providers were open to biomedical treatments.
I: How does [your CAM practitioner] feel about your Western medical treatment—the mammogram and the medicines?
P: Oh, she feels, of course, that that's very important. (75 years old)
I: Does [your CAM practitioner] know about the medical treatments or your use of Western medicine?
P: Yes, and she's not threatened by it. She believes that eventually chiropractors and orthopedists will work together, but she recognizes that there's a lot of hostility on the other side. And she doesn't seem to have it towards them. (61 years old)
Twelve participants chose not to discuss biomedicine with their CAM practitioners, believing that this type of interaction would not make sense given that they visited their CAM practitioners for reasons different from what they went to their physicians for.
I: How did [your CAM practitioner] feel about your seeing a primary care physician?
P: We didn't discuss it. I didn't come there for my general health. I went there because I had whiplash and arthritis [laughs], so that was it! It was my choice to go see him, to seek him out; so he, I assume, figured I was seeking him out because I needed some help in a given area that I wasn't getting some place else. (73 years old)
Six participants described their CAM providers as not supportive of Western medical treatments. These negative attitudes did not influence the participants’ use of biomedicine.
I: Do you talk with [your CAM practitioner] about the kinds of treatments you get from [your physician]?
P: Yeah. She doesn't approve of doing the blood pressure medications. Sometimes I'll get a tremor and she thinks it's from the meds. But—okay [laughs], I believe in Western medicine there. I think that's out of her ball park, you know. You have to use your own common sense. (64 years old)
Two participants said that they had left the practices of CAM practitioners who were too strongly opposed to biomedicine and found providers who were more open to its use:
That's why I left the other acupuncturist, because I got such a lecture from her about not having surgery—to do everything with herbs. And I thought, “She's not a medical person, first of all, and I'm getting this lecture,” and it scared me. As much as I would love to have done that, my life is affected here—maybe we'd better not be so blasé. It's my breast and my life. (66 years old)
Participants spontaneously noted that CAM practitioners typically took more time to talk and listen to their clients, but this difference was not presented as a criticism of physicians. The women recognized the cost-driven reality of medicine, but those who said they spent longer talking with their CAM practitioners commented on how much they appreciated the lengthier interactions:
She's one of those massive gifts to me—just her incredible caring and concern. One of the things that I've found that I get from my non-Western medicine care providers is that you get 50 minutes or an hour of totally “you-focused time.” And my experience is they're great listeners and they're there with you, sort of—it's sort of spiritual, in a funny way—kind of like “in your space” for that time. Whereas Western medicine, you go in and you get your prescribed 10 minutes or 15, whatever your health plan gives you. And it's real quick. So, for me, there's a wonderful balance of having great Western medical care and then going out and having my other treatments and finding their concern, their care, their gentleness, and [laughs] that sort of peaceful edge that they have, where Western medicine goes too fast. But you can't do anything about it. (60 years old)
All the study participants were responsible for managing any potential interface between the biomedical and CAM aspects of their health care. The women felt it necessary to seek information and make choices about their care, often carefully strategizing to have a range of needs met:
I ask a lot of questions. I'm very nosy about what I take and also I don't think [my physician is] right all the time, and I tell her that. I tell her when I disagree with her. And she respects my disagreement with her. (82 years old)
If I don't understand him, I ask him to translate it into English from medical talk. (74 years old)
I want my doctor to know who I am. I don't want to be a “Kaiser number.” So I started calling her [by her first name] right from the beginning [laughs], which probably frosted her. Anyway, if I call and I leave my name, she knows who I am. (64 years old)
Well, you know, if they refer to me as “dear”—in one case, I called him dear. That did it. (75 years old)
The participants neither expected nor requested that their physicians manage the integration of their biomedical and CAM care. The women took an active role in dealing with aspects of the different medical systems:
I thought, “Why in the hell am I taking Vioxx? And why in the hell did my doctor give me a pill that has a side effect of strokes at my age?” So I didn't like it. I mean, I didn't like the effect it had on me so I stopped it. And then I heard about this herbalist. In other words, I'd rather have the pain than the stroke. (75 years old)
Whenever something goes wrong, and I'm not sure and the doctors don't seem to be able to tell me, I will call Dr._____oh, he's not a doctor, but he's an herbalist. (67 years old)
The participants also took a great deal of pride in being able to handle difficult situations: if they were dissatisfied with their care, they felt compelled to take the initiative to rectify the situation. Sometimes there was no easy solution to a problem with a health care practitioner:
I tried a Dr. _____, who when I asked her a question said, “Well, I'd like to see you in 4 months.” And I said, “Why 4 months?” She said, “Okay, 6 months.” I thought, “Well, that's no f—-ing answer.” I wasn't questioning her. I just wanted to know. She could have said, “Well, I think in 4 months I'll have all these things here, and I'd like to do a reevaluation.” You know, be honest with me. It's my body. . . . So I thought, “Well, I've got to have somebody, and if I have to keep trying these people forever, I'll try 'em.” (61 years old)
I just told him I thought we would probably work better apart. . . . I said, “I don't think I'm your personality type. It's really hard on me because I have a good relationship with all my doctors. I don't even feel like you know who I am.” (60 years old; deceased)
Despite the fact that a preponderance of study participants were comfortable managing the interface between biomedicine and CAM in their lives, there was still an awareness that not all older women were in the position to “take charge” of their health care:
Well, I can't understand these women, “Oh, my doctor said I had to do this!” And I say “Lady, it's your body! You can do whatever you want, you know? [laughs]” But some people, they don't have enough—whatever it takes—to do what they want. (62 years old)
Even among the older participants who took an active role in their own health care, the responses were often carefully modulated—women were very aware of their context and also cognizant of societal views of older women:
There's no sense in getting mad at them. Then you're just a cranky old lady. (81 years old)
The study participants highly valued their simultaneous engagement with biomedical and CAM health care. The older women felt that engaging in both biomedicine and CAM was critical for the successful management of their activity-limiting health concerns. Although participants came from a broad range of cultural and socioeconomic backgrounds and described relationships with practitioners across the spectrum of biomedical and CAM specialties, the ways in which the older women talked about their management of parallel interactions with physicians and CAM practitioners were remarkably consistent.
Our study focused on the interface between biomedicine and CAM as experienced by older patients engaging in both systems, but the core themes reflect findings in the broader literature on health and illness beliefs and aging.17 The ideal of maintaining an active life while aging, despite illnesses or physical limitations, was prized by all the study participants, and to this end, they actively engaged in both biomedical and CAM healing strategies. The women took responsibility for and felt empowered by their management of health care treatments and providers—and explained that this management encouraged them to be more active and participatory in their health.21,22,27 Earlier studies in the gerontological literature characterize older patients as particularly unwilling to act independently of medical authority and exercise independent judgment.28,29 Although it is true that older cohorts may have a different perception of the expected and proper role of the patient in health care relationships,24 it also appears to be the case that, for at least some women, the necessity of self-management of health care enables a revisioning of the patient role.
The study participants shared a sense of self as ageless, and the women emphasized the continuity of identity, despite the physical and social changes associated with aging. Participants did not characterize themselves as “old” and expressed dismay over the fact that their age appeared to adversely affect their physicians’ (but not their CAM practitioners’) views of them. The women would have preferred physician communication that did not reflect ageist biases but, for the most part, were relatively satisfied with their doctors.
Contrary to the current ideal of physician–older patient communication, one half of the participants did not think it necessary to discuss their CAM use with their physicians nor did they expect their physicians to integrate their care. Most participants, on the other hand, felt quite comfortable discussing all aspects of their health care with their CAM practitioners. The study participants were confident in their assessment of their needs as well as the strategies they used to implement them. These women did not feel compelled to synthesize the different healing systems with which they engaged; on the contrary, they were comfortable developing their own personal healing systems to bridge the gaps.
There are 2 potential study limitations that should be noted. Our triad design, which allows us to examine interactions among specified relationship networks (patient/physician/CAM practitioner), required that we enroll only women who were simultaneously under the care of both a physician and CAM practitioner. Our sample of patients was drawn randomly from a population-based case listing, and only 1 eligible woman declined to participate (98% response rate). Our findings are, however, limited to older women who choose concurrent care and thus may not apply to the relatively larger population of older women who self-treat with CAM. Given the challenges of receiving concurrent care, it is possible that the women in our sample were more likely to be well-informed about health-related issues and to prefer to use their own judgments regarding their health care than the broader population (although Kelner & Wellman, 1997, make these claims for CAM users generally). The fact that almost three-quarters of the participants were single, widowed, divorced, or separated may have given them a greater inclination toward or need for health care self-determination—although, because of women's greater life expectancies, this association is unavoidable. Also, there is the possibility that practitioner gender could have acted as a confounder in women's assessment of the nature and quality of their interactions with physicians versus CAM practitioners. The patients were much more likely to have gender-concordant relationships with their CAM practitioners than with their physicians. It is not clear whether this was the result of patient preference (as well as relatively greater freedom in selecting a CAM practitioner than a physician) or merely a reflection of the preponderance of female CAM practitioners.
With the maturing of the baby boom generation, it appears likely that older age groups will surpass younger ones in prevalence of CAM use, with a concomitant rise in the percentage of older people seeking care simultaneously from physicians and CAM practitioners. Although potentially empowering, self-management of the interface between biomedicine and CAM raises questions of patient burden, particularly among vulnerable populations. Further research is needed to determine whether the ideals of active aging and taking responsibility for managing different healing strategies are welcomed by older people from varied cultural and socioeconomic backgrounds.
This study was funded by the National Institute on Aging, the National Cancer Institute, and the National Center for Complementary and Alternative Medicine (R01 AG17973) and a pilot grant from the UCSF Mount Zion Health Fund.
The collection of cancer incidence data used in this study was supported by the California Department of Public Health as part of the statewide cancer reporting program mandated by California Health and Safety Code Section 103885; the National Cancer Institute's Surveillance, Epidemiology and End Results Program under contract N01-PC-35136 awarded to the Northern California Cancer Center, contract N01-PC-35139 awarded to the University of Southern California, and contract N02-PC-15105 awarded to the Public Health Institute; and the Centers for Disease Control and Prevention's National Program of Cancer Registries, under agreement #U55/CCR921930-02 awarded to the Public Health Institute.
The authors wish to thank Kathleen Kerr, UCSF Department of Medicine, for database design assistance.
We are deeply grateful to the women with breast cancer as well as their health care practitioners, who generously shared their thoughts and experiences in participating in this research.